View Full Version : Leukemia and Lymphoma
Hello everyone
I had myself a head CT scan on Feb 20th to see if it could spot anything in regards to what appeared to have been a migraine. I'd had a lot of issues regarding my chest/stomach, before I began noticing 24/7 twitching all over my body. The doctor ordered me an MRI, but being my stupid self I became extremely anxious and ended up getting the CT scan before.
Since then I've been living in a world of worry and confusion. Firstly, the next morning after the scan I awoke to my eyebrow hairs coming off with little effort, then during the evening I struggled with intense stomach pain after eating my dinner. During the night I awoke to extreme abdominal pain on my right side. I had almost diarrhea in the morning. Going 3-4 times and leaving my lower right abdominal in a lot of pain. I also experienced a massive pain in the lower right of my back. So much so I could barely move without pain. It felt much like an injured lower back which I've suffered from in the past due to exercise, only I'd done nothing for a few weeks since the onset of my feeling ill.
A day after this I became aware of a sunburn like pain on my forehead, cheekbones and tip of my nose. I tried applying aloe vera and my entire face went bright red. I washed it off with cold water immediately and the red diminished after a couple of hours.
Hair was still coming loose a few days later, with my toilets still not being right. Undigested, yellow/pale and loose. My abdominal area still hurt. The burning sensation on my head also hadn't gone. My right ear began to ache and I had louder than usual tinnitus with a different tone in that ear during the night that followed (I suffer from tinnitus anyway).
About a week and a half in and I noticed my balance feeling off. It felt as though I was leaning more towards the right, like my head wanted to tilt that way. I was perscribed Stemitil 5mg twice a day in case it was inner-ear related. These did nothing to help.
Two weeks in and I was still having bad toilets, still had the burning sensation, although it had somewhat ebbed a little. My head was still really off-balanced and my ears had began to go bloodshot, especially from the tear duct to the iris, the white space between those had a thick red veiny look to it. My ears constantly felt out of focus, as though i'd randomly go crossed eyed from time to time. I also noticed flashing lights and blue spots in vision, both peripheral and front.
This continued for about 4 weeks. Eventually my toilets went back to normal, and the bloodshot eyes began to alleviate. My head continued to feel uncentered though, and my vision regarding the eye flashes had become worse. The burning sensation had gone by this point, but the skin on my forehead felt/feels oddly smooth and thicker.
I had my eyes check by my GP who thought she might suspect pressure behind my right eye. I had an eye examination booked the day after this anyway, and so I had that done. The optician said everything looked normal, pressure and retina all fine.
A week after this, so 5 weeks in total, I suddenly lost my sense of taste and became having a really dry mouth. My teeth began to hurt and my gums, especially to the right, have receded a little.
6 weeks into it now and I'm having a really hard time. I'm having problems thinking straight. I often feel confused. My eyes are constantly having flashes of colour. My left eye keeps showing white spider-like flashes when i look to the left. And every time I look at or past objects, I get an after image or a blurry-like shape of the object/light that moves with my eyes. I'm constantly hearing a whirling washing-machine like noise at all times.
I've gotten another MRI booked in two weeks even before I'd heard about the results of my first one. Which has scared the crap out of me.
I've spoken to doctors during all of this and they all claim that what I'm suggesting, that being radiation induced due to an accident/bad calibration, as being impossible. They never explain to me how it can't happen and never go into greater detail. I've been constantly told it's anxiety, but I'm not buying it. I'm anxious of course, but how can all these symptoms that can be explained as radiation damage be due to just stress and anxiety?? I've been anxious before. I've a tendency to overthink things regarding my health, hence I had the CT scan in the first place, but this is something much different. I'd love it to be explained away as stress, but I'm awfully convinced otherwise. It terrifies me that this could be radiation induced damage. That i've not been taken seriously and it's been left. If no damage is obvious now, what of the future. I'm well and truly in the grips of depression, and I'm scared more than ever as to finding out the issue that's been plaguing me for 7 weeks :(
Sorry for the long post. I just wanted to get everything I can think of out there.
I'm a Head and Neck cancer survivor and I had 30 radiation treatments to my neck. Enough to burn the skin off my neck and turn my throat into mush. Add to that a CT scan prior to each treatment to aim the beams of radiation. While I have no idea what's causing your symptoms (you are on an anxiety site so that speaks volumes), I can say and agree with your doctor that it's not from the CT scan.
Positive thoughts
Hey @Fishmanpa
Appreciate the reply. I'm sorry to hear you went through all that, but you're still here, and that's what's important :)
I understand it sounds extremely unlikely, but there's always a chance it might have.
These symptoms are yet to be explained as something other than radiation induced. The fact they're all happening around the same time as each other, being progressively worse since a couple of weeks ago and right after the scan, have left me thinking it can't be anything else.
My mind is a serious muddle right now. Half my head feels different from the rest of my body. I just want to sleep all the time. This is coming from something who was very active and worked out twice a day.
I had the MRI that was booked on March 28th, and I've just got another letter for a second appointment booked before I've even had word about my first. I'm to call today at 2pm to figure out why. I'm madly anxious :(
I have so much regret for ever having the scan. If only I'd waited for the MRI like a normal person. Such regret :(
You don't mention your hair falling out, or vomiting suddenly afterwards (or the days afterwards), or quite a few of the other side effects that occur in radiation overexposure. You have mentioned quite a few other 'symptoms' in your list that would not be attributable to a CT scan radiation overdose. I won't lie to you, there are rare radiation overdoses, usually the blame being human error. However, most of those overdoses don't occur for a one-off CT, but people having RT therapy and an incorrect amount given. For a standard CT scan, I believe, (but I might be wrong) there are safeguards built in within the machine, to alert the staff to any potential errors. Your doctors say it is 'impossible', ask them more clearly to explain why its not possible.( I too have had RT, like Fishmanpa, 19 doses. It burnt and took off my skin, with blisters and peeling for weeks, dressings and creams were needed for 6 months. Hair was lost in the area, and never grew back and the skin is permanently discoloured.)
Everything you mention here sounds like an intense HA episode.
Looking back at your posts from 2015 - you also mentioned floaters, tinnitus and a couple of other things that have been repeated in your CT radiation fear. Just saying, as maybe it might help you to see that you've posted about them before and they were nothing to be concerned about last time.
Hello there @Carys
Thank you for the reply. And like Fishmanpa, I'm sorry you've also had to endure RT treatment, but glad you're still here with us :)
I did mention that I'd suffered hair loss with my eyebrows the next day. There's even a small patch where more feel out at the top left of my left eyebrow. My hair all across my body feels thin and limp. That too comes out with little effort. The hair in my beard that's regrowing has some lighter stands of brown and white hair, when before it was all extremely dark and coarse.
I've tried and tried in regards to asking the doctors to explain it in more detail, and they simply say that there's sensors on the radiologists at all times. Though what's odd to me is that neither radiologist was present in the room with me during the scan for obvious reasons, so I don't that as a relevant safety measure in the incident to over-exposure.
I'm crossing every part of my being that this is all just HA to the extreme. That this chronic stress has caused all these symptoms. I'm just having such a hard time believing that though. I've been told I'm not logically thinking this through, but I'd say that considering the onset of symptoms, and the time scale/order in which they've been presented shows a direct connection to head radiation. From forehead/hair/digestion, to eyes and now mouth and throat, with possible damage to the salivary glands causing this dry mouth and zero taste for almost 2 weeks now.
I'd hate to think you find me rude and inconsiderate due to the fact you've experienced high-dose radiation first hand, but I've been struggling with this for almost two months now, with everyone telling me it's anxiety. Yet nobody has told me, nor are willing to tell me, that the machine is neither capable due to xxxx and that in the event we'd know because of xxxx. All I've managed to gather from the doctors is that 'it cannot because it should not'. Which is hardly satisfying :(
Edit - As for the floaters, they're still there as always, but these are completely different. I know my eye floaters and they're physical. These flashes, blotches of random colours (both of which usually more in my peripheral vision, but not always) and afterimages everywhere I look are something entirely different.
The tinnitus is also here still, but I've become mostly habituated to it due to the fact it hasn't changed at all since a few months after its onset. A completely new tone accompanied with ear ache was something very new and noticeable to me, and just so happened, like everything else, after my CT scan.
unsure_about_this
09-04-18, 15:06
Not had as much as Fishmanpa, but had a number of MRI scans due to me having NF mainly brain scans, and one doctor wanted a nosey around a curve spine which nothing odd was found.
I have had probably had a lot of raditation from flying, nature sunlight etc, seem some wonderful places long that continue.
I understand it sounds extremely unlikely, but there's always a chance it might have.
No, there is no chance at all :lac: If that were the case, I wouldn't be here.
Positive thoughts
No, there is no chance at all :lac: If that were the case, I wouldn't be here.
Positive thoughts
I didn't mean to imply that this is a risk taken with all scans. I was implying that nothing is perfect, human, machine or otherwise. It's still something that can happen because it's not impossible (as far as I've been convinced), and thus..
---------- Post added at 15:16 ---------- Previous post was at 15:13 ----------
Not had as much as Fishmanpa, but had a number of MRI scans due to me having NF mainly brain scans, and one doctor wanted a nosey around a curve spine which nothing odd was found.
I have had probably had a lot of raditation from flying, nature sunlight etc, seem some wonderful places long that continue.
Long may it continue indeed :)
I just wished i'd waited on my MRI and not rushed to have what was unnecessary radiation and the predicament I know find myself in.
There are some very common radiation overdose side effects, to extreme doses, which you haven't mentioned. What about that ?
No, I don't think you rude at all, I can see you are deeply in the grips of a fear. Well, I don't know about anybody else, but when I had CT scans and radiotherapy, I was always alone in the room, so thats not an issue. They monitor from equipment outside.
unsure_about_this
09-04-18, 15:22
I didn't mean to imply that this is a risk taken with all scans. I was implying that nothing is perfect, human, machine or otherwise. It's still something that can happen because it's not impossible (as far as I've been convinced), and thus..
---------- Post added at 15:16 ---------- Previous post was at 15:13 ----------
Long may it continue indeed :)
I just wished i'd waited on my MRI and not rushed to have what was unnecessary radiation and the predicament I know find myself in.
Thanks what done is done. I had one or two unnessary scans when I wanted to get to the bottom of my abdominal pains 4 years ago, nuclear scan and ct scan, a small common pouch non cancerous was seen during the camera up my backside
I recognise your 'but what if they don't believe me and it DID happen' mindset. It is easy for the human mind, in a very anxious state to convince you of symptoms and even 'create' symptoms.
You have described your symptoms to the doctors and they don't perceive them to be radation sickness.
The radiation symptoms are usually based on whole body exposure in the event of serious acute side effects. I'm not aware of the exact process of something more specific like the RT you had, but a targeted area of the body wouldn't produce such extreme symptoms such as whole body radiation, which is what I think you might be alluding to..?
From the way I've interpreted my symptoms, are those that are less extreme because it was a specific area and with only one 'session'.
Again, I'm not claiming to know everything, and I hope I cause no offense in my theories as to what might be going on.
---------- Post added at 15:43 ---------- Previous post was at 15:36 ----------
I recognise your 'but what if they don't believe me and it DID happen' mindset. It is easy for the human mind, in a very anxious state to convince you of symptoms and even 'create' symptoms.
You have described your symptoms to the doctors and they don't perceive them to be radation sickness.
I get this, and at the beginning I tried ever so hard to convince myself that these were the makings of my own mind. Though I found the physical symptoms such as my hair loss/thinning and sunburned feeling on my forehead, to be difficult to put down to a mental manifestation of my fears. I could believe that my bad stomach and eyes could be affected by anxieties, but then both have ceased, yet I'm as stressed/anxious than ever, more so in fact. Then the onset of newer symptoms such as taste loss, gum problems and extreme dry mouth that are very much symptoms of something radiation induced. From what I've read, it's not uncommon for peoples undergoing head/neck radiation to suffer from such things a few weeks after the therapy begins or ends?
Have you visited your GP for these symptoms ?
Annaboodle
09-04-18, 15:52
Hello. Reading your post I'm thinking that if you actually had all those symptoms you're describing (hair loss, blood shot eyes, receding gums, etc) it would be blindingly obvious to a doctor that something was badly wrong. I honestly think your fear is making you analyse things you normally wouldn't even be aware of and also invent some symptoms out of nothing. Like, if I pull at my eyebrows a bunch of them come out and there's a small patch where the hairs don't grow anyway. I had an alopecia fear where I decided it was a symptom of that. My eyes are often bloodshot from my insomnia, dehydration, etc. Easy to attribute that to many of the diseases I've feared. I'm speaking as someone who in the past genuinely believed my skin and eyes were turning yellow when they weren't. I was utterly convinced I could see it when I looked in the mirror. I'm also capable of "creating pain" in my back through a combination of imagination and tension when I am focused on a particular fear which has that as a symptom. HA is an utter beast of a thing.
I have, yes. The first I spoke to straight up said no, it just can't. The other told me 'people suffer', which I didn't really see as anything productive.
It seems that everyone I've gone to readily dismisses it as anxiety without further investigation. That I believe a simple head scan of a UK average of 1.4msiv is enough to cause all this.
I've spoken to the radiology department briefly after going to the hospital when my hairs began to really fall out. He told me that the process was a normal one, and gave me the amount given during the scan. Im not concerned that the actual scan that produced the image wasn't correct, but that something happened whilst it wasn't scanning. Whether it was on the initial turning on of the scanner or during it's calibration. That it was giving out radiation without the radiologists knowing.
I know they're supposed to be inside a protective area away from the active machine, but then their reassuring me that the rads meters they carry with them for their own protection means nothing if they're not present. What about something in place for when it's just me in the room with the machine. They've said nothing about this. To monitor what's going on during that time.
I know this must sound like the ravings of someone completely in the grips of HA. It would be foolish to say I'm not anxious due to this, but I believe my fears to be rational due to what I've experienced, when I've experienced it and the lack of evidence that there are safeguards in place to prevent such an accident.
---------- Post added at 16:14 ---------- Previous post was at 16:14 ----------
Hey Annaboodle
I completely agree, the mind can be a terrible thing. I too have had moments where my fears (and body) led me to believing the worst thing. I'd do the typical thing of google self diagnosing myself and begin experiencing ailments that fit with the illness I believed I had. I've never experienced something quite like this before though. Especially since I'd not googled anything about radiation until I was well into my symptoms.
This just feels all too different and very real. I'm utterly depressed at the prospect. I've tried to find ways to convince me otherwise, as I don't want to think this could have happened, but to no avail :(
This just feels all too different and very real.(
I understand you're scared but I'm telling you from personal experience I should be glowing with the number of x-rays, CT scans, PET scans, sun exposure, airplane rides etc., I've had in my lifetime! Not to mention having radioactive isotopes injected into my system for PET scans and literally poisoned with a platinum based chemo drug during treatment to kill the cancer. Heck, I even went fishing on a river and floated past a nuclear plant dozens of times ;)
I wish there was something someone could say but I'm talking fact here.
I hope you feel better soon.
Positive thoughts
I have a CT scan every six months to monitor my aortic aneurysm. I am recent diagnosis (last year) but I know folks who have had dozens and dozens of CT scans.
My cardio thoracic surgeon told me the odds of a given CT scan causing any complication is about 1 in a 1000. The only serious complication (disregarding contrast) is cancer, but even if you had developed cancer from a CT it would take a long time to show up.
Now, I am never in the CT machine longer than five minutes, and I imagine it would be very difficult to get the exposure levels you are talking about unless they left you in there a very long time. The only way to get radiation poisoning the way you are describing it get what would amount to 300 full body CT scans all at once.
I think Kopsey is imagining not a normal head CT scan situation, but that the medics left the room...the machine was faulty/inputted information was faulty and he was given a whacking great dose to the head that was at dangerous levels.
I think Kopsey is imagining not a normal head CT scan situation, but that the medics left the room...the machine was faulty/inputted information was faulty and he was given a whacking great dose to the head that was at dangerous levels.
That is a kin to someone dipping a needle into HIV and contaminating a person at a blood test and imaginary rodents giving someone rabies (real threads here). It's just not in the realm of reality.
Positive thoughts
Yep, agreed, but just saying that I've realised explaining our levels during scans and therapies isn't getting through.....as he is thinking something 'out of the ordinary' happened.
He told me that the process was a normal one, and gave me the amount given during the scan. Im not concerned that the actual scan that produced the image wasn't correct, but that something happened whilst it wasn't scanning. Whether it was on the initial turning on of the scanner or during it's calibration. That it was giving out radiation without the radiologists knowing.
Have the doctors looked at your receeding gums? Dry mouth? Hair falling out ? Red peeling forehead ? Did the first GP actually LOOK at all the symptoms you described.
Yep, agreed, but just saying that I've realised explaining our levels during scans and therapies isn't getting through.....as he is thinking something 'out of the ordinary' happened.
Have the doctors looked at your receeding gums? Dry mouth? Hair falling out ? Red peeling forehead ? Did the first GP actually LOOK at all the symptoms you described.
'Out of the ordinary' is exactly what I'm thinking. You're spot on in regards to what I mean.
I've spoken to 2 doctors since my latest onset of symptoms. My GP and the A&E clinic I was refered to last time I was up there. My GP barely listened to me. He performed no single test. Instead he asked me how my relationship with my family is. Whether I had any issues with my sisters. Then he produced a couple of anxiety and depression tests and told me 'patients suffer' and i'm taking up too much of his time. I was kinda blown away with how dismissive he was actually.
The A&E doctor was a little more sympathetic and had a little look behind my eyes, checked my glands and offered me pain killers. He looked at my MRI and told me everything looked 'relatively normal'. I've actually got another MRI booked for the 19th from the day I saw him. My GP claimed today that he hadn't ordered me another one, and that my MRI showed him 'nothing that concerned him'. Interesting to know what/if the other doctor saw anything..
I am not sure the machine is even capable of administering the sort of dose of radiation that you would require to get the illness you are perceiving. They would have to leave you in for a slow cook like a roast, it simply cannot happen. I do know a lot of what you are experiencing, even hair loss, *can* be attributed to anxiety.
With regards to the hair loss, are you pulling out great hunks of it, or strands here and there? Because radiation hair loss is dramatic.
Hey @Iofwyr
I'd like to think it couldn't that's for sure. I was only in there for about 4mins. The scan itself apparently only takes 30 seconds, so I'm guessing the rest of the time is the x-ray and calibration (???) It's during that time that I'm convinced a large dose was being administered unknowingly. As unlikely as that sounds.
For me to receive enough radiation for my symptoms at an amount of the usual head scan, you're right, it would take a very long time.
I know anxiety can be attributed to a great many things, that and chronic stress. Although, I'm not sure this constant spider-like ghosting in my peripheral left eye, the constant random colours and lines in my immediate vision, the taste loss, the hair loss/weak limp feeling, gum recession and sunburned skin could be attributed to anxiety and/or stress.
In regards to the hair loss. While it's not falling out in literal clumps, it's falling out in the specific area of my eyebrow line. They're much thinner than they were, and there's an obvious small patch missing at the outer-left side of my eyebrow. The loss is more a few on my hands when I touch them. My hair on top of my head also sheds more, as does my body hair. It all feels really thin and limp. My facial hair is way softer than it ever was. I had really coarse hair before. There are a few white strands in my beard that were never there, as well as some small white hairs coming through at the bottom of my hairline.
Kopesy,
Seriously, this is a case of perception vs. reality. Anxiety has a way of skewing reality to support the irrationality. It's all over the boards. Are you getting professional help for your anxiety? It's quite apparent you're really in a spiral and it's severely affecting you.
Positive thoughts
Hey @Iofwyr
I know anxiety can be attributed to a great many things, that and chronic stress. Although, I'm not sure this constant spider-like ghosting in my peripheral left eye, the constant random colours and lines in my immediate vision, the taste loss, the hair loss/weak limp feeling, gum recession and sunburned skin could be attributed to anxiety and/or stress.
In regards to the hair loss. While it's not falling out in literal clumps, it's falling out in the specific area of my eyebrow line. They're much thinner than they were, and there's an obvious small patch missing at the outer-left side of my eyebrow. The loss is more a few on my hands when I touch them. My hair on top of my head also sheds more, as does my body hair. It all feels really thin and limp. My facial hair is way softer than it ever was. I had really coarse hair before. There are a few white strands in my beard that were never there, as well as some small white hairs coming through at the bottom of my hairline.
Anxiety can cause everything you listed, including that sort of hair loss. It is so common there are clinics that treat it. Literally every single thing you mentioned, as Fish said, has been on this forum hundreds, maybe thousands of times. Radiation poisoning goes way beyond gum recession, and gum recession can absolutely be perceived, gums would be bleeding and teeth would be falling out if you are talking the dose of rads required to do the damage you are perceiving.
You need to receive some counseling and learn some CBT techniques, they helped me a lot when I was in your shoes. Trust me when I say my biggest regret in life it letting 5 years slip by in worry and stress over impending medical disaster that never materialized. That was almost twenty years ago.
You need help slaying the dragon, and that dragon is not radiation sickness, I can assure you.
I'm not saying it's huge radiation sickness, as it's not a full body effect. It is however of the head. There's no way this can be explained as wholly anxiety. It seems like such an easy thing to put it down to. The symptoms began happening right after the scan. I remember actually feeling strange after it was done. Like very dizzy.
My eyes, especially the left just isn't working the way it did before. If it were anxiety, then why is it just the one eye effected and happens when I'm not consciously thinking about it? And complete taste loss, just like that. I've not read anything to explain that its a psychological reaction. My mouth/gums are extremely dry all the time now, too.
I pulled a crazy eyebrow hair out yesterday. It was at least twice the size as the rest. It felt thicker and wiry. The bottom half that had grew was see-through/opaque white. Couldn't this be something caused by radiation? Like some sort of DNA damage or cell mutation. This has never happened before.
The shape of my beard is also growing slightly different. The left side seems to curl up slightly more and leaves a sort of space that was never there.
My brain feels like mush. Like it's been put into a blender and put in backwards. It doesn't feel right at all. I feel completely messed up.
It's all too coincidental to not be something other than stress/anxiety!
I'm literally losing my mind trying to process it all. I'm not seeing things other people aren't. It's really happening. Yet nobody is believing a word I'm saying because the odds are so low. Yet nobody can also explain the reasons it can't be radiation.
It's all I can think of. I've started to wake up at night and seeing parts of my dreams while I'm awake. Last night I jumped out of bed believing there were radiation tendrils crawling through the covers. It's too much :weep:
I wish I'd never had the scan. I'm such an idiot for getting to that point due to stress. And in doing so, without reason, I feel like 'the boy who called wolf', and now I'm utterly screwed. I'm so upset :weep:
---------- Post added at 09:27 ---------- Previous post was at 09:12 ----------
And why did my scan only take 3 minutes?? Everywhere I've read suggests it takes between 10-15 minutes. Why was mine so quick?? Could it be too much radiation was used and they wanted to get me out as soon as possible?
What happened to me in there?! :weep:
I'm sorry to put it like this, and please don't take this badly...
And why did my scan only take 3 minutes?? Everywhere I've read suggests it takes between 10-15 minutes. Why was mine so quick?? Could it be too much radiation was used and they wanted to get me out as soon as possible?
What happened to me in there?!
This is conspiracy theory paranoia stuff. I've done a quick check on standard CT head scans, and it says that scans can take from a few seconds to several minutes. If they had given the wrong dose - why would they cover it up and hide it - they would have a duty of care to treat and report it.
I'm sorry to put it like this, and please don't take this badly...
This is conspiracy theory paranoia stuff. I've done a quick check on standard CT head scans, and it says that scans can take from a few seconds to several minutes. If they had given the wrong dose - why would they cover it up and hide it - they would have a duty of care to treat and report it.
I know, I'm sorry.. :unsure:
My mind is just going to every little thing at the moment.
You don't need to be sorry , I GET it, I've been there myself many years ago. I'm just saying that objectively, reading your posts, that is how it appears - you are in the grips of a paranoia which many here will have also experienced at the height of their anxiety. :wacko:
You don't need to be sorry , I GET it, I've been there myself many years ago. I'm just saying that objectively, reading your posts, that is how it appears - you are in the grips of a paranoia which many here will have also experienced at the height of their anxiety. :wacko:
Thank you.
I know I'm extremely anxious, but I'm still fully convinced it happened.
I have another eye test booked for tomorrow to figure out what's going on with my eyes. The left is particularly bad. Hopefully they find nothing wrong.
I've booked a dental appointment for next week to also figure out what's causing my gums to reduce, and my taste loss. It's been 2 weeks and I can taste absolutely nothing. No metallic or bitter tastes people have claimed to have. Absolute zero sense of taste.
I know I can sound crazy, but it's just the frustration that comes across :unsure:
I hope your eye and dental appointments help you, and I truly hope they find nothing untoward that can't be explained easily. I think if you are feeling the way you are, then some medical checks that you are booking to reassure yourself are sensible. The trouble is, if they find nothing, and you continue to 'search for evidence' of the CT scan fall-out, then that is the time to really rein yourself in and get anxiety support.If they do see something that is unexplained....well thats a different matter isn't it.
I know how it feels to be convinced of something and 'not be believed' (or at least feel that way), its not a nice feeling. :weep: Do let us know how your eye and tooth checks went.
I feel like I'm at rock bottom. If what I believed to be true happened, then I'm pretty much buggered :weep:
The radiation wouldn't even be targeted, which the RT scanners give. Mine would have gone all over my head and brain.. It terrifies me just thinking about it.
I don't know how to cope with this. I feel utterly broken inside. I just want to cry :weep::weep::weep:
Are you currently receiving any mental health support from anyone at the moment ?
Feel sad reading this thread as you haven't received the level of mental health support and care you need right now. I'm not being patronising but until you feel better and stronger mentally, these fears and symptoms will continue. There is no point any of us telling you your symptoms are not "real" because to you they are. But I firmly believe they can only be treated alongside your mental health illness, which you now need to reach out and receive help for.
I also think that you're very depressed, and this alone will magnify symptoms. Please see another GP if necessary and explain how you're feeling and being impacted by all this.
And now I've lost my sense of smell also.. What is happening to me?? I have no cold or blocked nose to be able to say it's that. My brain has been seriously damaged. I just know it has. :weep:
I'm currently waiting for the cbt that I asked for. Apparently it can take 9-12 weeks. Not that I think it's going to help.
I would love to think this is all just a mental thing, but it just can't be. And the alternative, radiation damage, is irreparable. Wow.. to think that I pushed to have the scan because of my selfish health anxiety. I forced my girlfriend to take me time and time again, without listening to her. This is my punishment for considering only myself. I'm so afraid. :weep:
Perhaps an attorney would be in order here. If what you're claiming actually happened and your symptoms were caused by a faulty CT machine, you have a great case. Also, others using the same machine would be at risk and have suffered the same exposure and be suffering similar symptoms.
Otherwise, as my experience has shown me, this just isn't possible and what I'm seeing and reading here is a severe case of mind over matter.
I hope you find some shelter from the storm.
Positive thoughts
Kopsey, as hard as this is for you to believe right now.....you will come through this....and I will put money on this not being radiation damage. How is your girlfriend feeling about your 'situation' right now ?
I would definitely see another doctor, a more sympathetic one! Also there is a free CBT course on here. The link is at the bottom of Fishmanpa''s post.
Do you actually get migraines?
Have you had blood tests for things like thyroid etc? ?
My girlfriend is trying her best. She's keeping strong for us both, but it's definitely wearing her out. I feel terrible for not being able to reassure her. I love her so very much. I want us to grow old together :weep:
I can't remember the last migraine I had, if ever. My blood levels were all fine, as was my thyroid function.
She sounds like a darling.
What does she think about your view that this could be a radiation accident?
I couldn't ask for a better woman :)
She thinks it's highly unlikely, but she'd like an explanation as to why it can't and why I'm experiencing what I am and have.
Just came back from the opticians. Everything healthy in terms of my eyes. No retina damage/detachment. The spider-like light in my left eye and the lights/colours in both would all be neurologically related.
So good news, but exactly what I thought. That it's possibly brain damage related. :unsure:
utrocket09
12-04-18, 17:14
Just came back from the opticians. Everything healthy in terms of my eyes. No retina damage/detachment. The spider-like light in my left eye and the lights/colours in both would all be neurologically related.
So good news, but exactly what I thought. That it's possibly brain damage related. :unsure:
You do realize you would hundreds of scans to have been exposed to issues with radiation. There is no way possible to go from being healthy to having issues with your brain. It doesn't make sense
You do realize you would hundreds of scans to have been exposed to issues with radiation. There is no way possible to go from being healthy to having issues with your brain. It doesn't make sense
Yes, I agree that is indeed true, but what I'm trying to say is that my scan wasn't the normal proceed of an average dose of 2mSv.
I believe that either the machine was emitting radiation during the calibration of my scan, unbeknownst to the Radiologists, or that, and this is quite controversial, I had 2 scan performed, the first being incorrect due to human error, exposing me to high levels of radiation, and the second scan being the scan I was then shown and used in my report.
While I'd like to think the latter scenario wouldn't be the case, (in fact I'd like to think none of this is the case) it's still a possibility.
While I'd like to think the latter scenario wouldn't be the case, (in fact I'd like to think none of this is the case) it's still a possibility.
No, it's not. Not at all! :lac: Rad techs wear personal dosimeters or radiation detectors. If what you described actually happened, there would have been enough residual radiation in the room to raise an alarm.
Positive thoughts
No, it's not. Not at all! :lac: Rad techs wear personal dosimeters or radiation detectors. If what you described actually happened, there would have been enough residual radiation in the room to raise an alarm.
Positive thoughts
I don't know why you'd think it so impossible? The detectors are on the radiologists in their area of safety, so they'd not see an initial 'alarm' to tell them I have or am receiving radiation. And what sort of residual radiation or we talking here that would cause concern? The majority of it would be inside me after all.
I'm not crying 'cover-up', but it's definitely not impossible, just quite improbable. All it would take is for the radiologist to have a lapse in concentration and to think nothing of it.
I've yet to find evidence that there is an actual system in place in case something like a leak or malfunction does happen. All I've read is that it's something we should look at implementing. I have no idea why it's not been 100% a thing since it's inception!
Maybe because of what I posted initially. 30 radiation treatments, enough to burn the skin off my neck and turn my throat into mush and 30 CT scans to aim the beams. Not to mention the PET scans, injected radioactive meds, repeat CT scans, x rays, platinum based chemo meds etc. etc. etc. Ok... I give... :doh: I hope the effects don't cause any long term issues. Keep us updated.
Good luck, peace and as always...
Positive thoughts
Maybe because of what I posted initially. 30 radiation treatments, enough to burn the skin off my neck and turn my throat into mush and 30 CT scans to aim the beams. Not to mention the PET scans, injected radioactive meds, repeat CT scans, x rays, platinum based chemo meds etc. etc. etc. Ok... I give... :doh: I hope the effects don't cause any long term issues. Keep us updated.
Good luck, peace and as always...
Positive thoughts
Thanks. Sorry if you're finding my thinking process frustrating.
I understand what you're saying. You've been through it all. I wouldn't be so silly as to claim to know anything. I've just not been told that it's an impossible thing without technical reason. If for instance I were to be told 'the machine cannot create such high amounts of radiation in such little time' or 'the machine has a device that doesn't allow for it to exceed..'. This would all be relevant in my trying understand the technicalities regarding the safety of the patient.
Again, I'm sorry if I'm coming across like that of a brick wall. :unsure:
Again, I'm sorry if I'm coming across like that of a brick wall. :unsure:
It's Ok... I feel bad reading this and cannot even begin to imagine being stuck on something so impossible (then again, the boards are full of the dark side of irrationality). To me as a non-sufferer, I compare it to someone saying the sky is green when there's no doubt it's blue. Actually that's an interesting analogy. Some instances of HA and mental illness are like being color blind to reality.
I just hope that you find the help you need to bring you some peace.
Positive thoughts
I feel for you too Kopsey, I really do. I honestly understand how it feels to be where you are now, its a hideous, dark, terrifying place and I know its intensely painful. You come across as such a kind, sensitive and intelligent person...and...I honestly hope that you come to a resolution on this soon. :flowers: Please do keep posting here, we do try not to get frustrated....our frustration is nothing compared to your mental anguish right now.
Thank you both.
I'm just utterly convinced of this. I really need to know what happened. I'm thinking the absolute worst of course. That it was so much I might not have been told due to the stress it might cause me upon finding out. And the more and more I read about the symptoms and the amounts needed to cause them, the more worried I am that I received huge amounts.
This is ruining my life completely. I'm so scared.
If anyone has any information regarding it, then please, I beg of you to help me :weep::weep::weep:
Hey everyone.
So it's been exactly 2 months since I had the CT scan. It's been the worst 2 months of my life. I'm not really living right now. I'm just here.
The symptoms I've been describing haven't gone away. My body feels exhausted.
My throat has been perhaps the worst symptom these last couple of weeks. I have a constant feeling in the back of my throat. It feels slightly swollen or tight. I'm constantly trying to swallow. My thyroid feels much larger than it was, so much so that I cannot feel the bottom of my adam's apple.
My mouth feels constantly dry and unfresh. My teeth that are usually very sensitive and sometime painful have lost all their feeling. They aren't exactly numb, but the sensitivity has gone completely. I used to have to hold water in my mouth before I rinsed because it hurt so bad. Now I feel nothing.
I went to the dentist a couple of days ago and she couldn't work out how someone my age has lost so much gum line when my teeth are in such good shape. I've noticed much more gum recession since I last commented. I can see the difference every 2-3 days.
It's been a few weeks now and my sense of taste is still non-existent. There's nothing. Everything tastes like nothing. I used to be able to sense the smallest thing at the beginning of when I started noticing the loss, but now there is absolutely nothing.
My eyes are continuing to drive me crazy. The colour green is constantly appearing at the corner of my vision (especially when there is the colour pink in sight weirdly). I'm seeing a small blue dot, like a laser pen, constantly appearing in front of my view. The after images when I look at things still take a couple of seconds to go away. It's a mess.
I'm struggling so much. Whatever tiny hope I had that this was something that could be explained as stress/anxiety has gone. I'm simply waiting for the next thing to come. I've got nothing. There is nobody that will even consider the possibility that this is the cause of radiation. I feel so alone. I am scared, but also resigned to it. I've let myself down. I've let life slip away from me. I should never have let my anxiety get so far as to give myself a CT scan. I wished they would have told me. One google search and I'd have denied the scan. Even a normal scan with such a small amount of radiation would have put me off. Instead, for my selfishness, my inconsideration for having my girlfriend put up with me while I went into meltdown with my anxieties. Anxieties that came out of nowhere. Why? I'm being punished for it. I never wanted to find a problem. I wanted to know I was okay, but instead I got this. I've ruined my life with this. It's some sort of disgusting irony and only I can see the 'joke'. I didn't want much. I loved my little life. How did this happen.
Oh Kopsey,
Im so so sorry that you are having such a terribly desperate time. I can feel your pain through your words. So, the dentist agreed that the loss of gum was odd ? Did you tell her about your fears?
I honestly think its time to get back to your doctor. You sound so very depressed, and you really need some help right now. Please take a written list with you of the symptoms you say you've had since the scan, and ask them to look at each and every thing you think is happening/changing. If you think the last GP you had wasn't listening/concerned, then go to a different one in the practice.
Why? I'm being punished for it. I never wanted to find a problem. I wanted to know I was okay, but instead I got this. I've ruined my life with this. It's some sort of disgusting irony and only I can see the 'joke'. I didn't want much. I loved my little life. How did this happen.
I know. I know all you wanted was to find out everything was ok. Look, I'm not going to say I disbelieve you in what you think happened. However, IF you do think that is what happened then you really need a thorough checking out. If someone was to check all the things you say are happening, and they can't see them, would you then be prepared to move on?
Hi Carys
She really did, considering she thought my teeth were in pretty good health. The reduction is quite an amount over such a short time. I told her only that I've lost my sense of taste for a while now, and that the gum recession has been recent. I avoided talking about radiation, as it's put so many off from taking me seriously these couple of months :(
I've been to 3 different GPs now, and all of them seem to ignore everything I tell them. They all tell me it's not under their field of expertise, and when I ask for anyone I can speak to about it, they draw a blank and shrug.
In regards to being fully checked out, then somewhat, yes. I'd like to talk to someone who actually knows their stuff though, instead of going to one person and the next who cannot help or understand what I'm trying to convey.
I'd also like to know about the specific machine I was under and why it can't have done what I believe has been done.
I know it sounds like a lot, I know. I don't think I'll ever get the help/information I want.
I'm really not sure what else to suggest Kopsey. Does your girlfriend have any ideas ? After all she is the one who is seeing you daily, and possibly seeing any changes that you think have occurred.
I'm really not sure what else to suggest Kopsey. Does your girlfriend have any ideas ? After all she is the one who is seeing you daily, and possibly seeing any changes that you think have occurred.
Hello Carys.
She's clueless as to what we can do. She can clearly see my symptoms, and although she's holding onto disbelief, she admits she finds them very strange, and that without explanation it's a possibility.
She's been with me through it all. We've been to the hospital and doctors and has shared in my anger and helplessness in how they've dealt with my case. They simply will not listen to me.
I'm barely holding on to hope. I hate the mornings. The realization of my situation hits me like a hammer. I try to keep sane while my girlfriend is home, but the opposite ends up happening. I'm constantly breaking down in front of her. I'm so ashamed. She's put up with me all this time and even though she tries, she can't do a thing.
Hello
Recently I've been suffering from a lot of itchiness all over the body. My toilets have become pale/yellow, which was a thing about a month ago before going back to normal. I've been experiencing pains just below my right ribs. They don't last very long and can range from sharp to dull. I'm so tired all the time, I barely leave my bed at the moment, and the last couple of nights I've also been having hot flushes.
I'm a 28yo male.
---------- Post added at 13:47 ---------- Previous post was at 11:37 ----------
I'm also scared that this could possibly be Leukemia?
I've had random red dots that come and go after a day or two. I've had taste loss for almost a month, which I've also read can be a symptom. As well as all the other symptoms I've described above.
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
Oh, sorry.
The reason I created it as another topic was to try and keep it away from the idea of radiation, as this was something that began at the start of the year before my scan, and therefore before the topic of radiation.
You are an administrator however, therefore it's under your authority. And so I accept your decision if you think it's best. :)
You said the symptoms got better but have since returned since the radiation fears started. You're in a state of incredibly high anxiety and it's apparent it's exacerbating some previous anxiety related symptoms and from what you're saying here, nearly immobilizing you.
Perhaps your girlfriend can help by looking into some intervention to help you? It seems you're just spiraling deeper and deeper :weep:
Positive thoughts
I'm also scared that this could possibly be Leukemia?
.
But your leukaemia fear is surely related to your radiation worry?
Not sure how anyone can reassure you any more than we already have, Kopesy. Are you able to speak openly about your fears with girlfriend and family? It's sad that you're not getting the help you so desperately need.
You said the symptoms got better but have since returned since the radiation fears started. You're in a state of incredibly high anxiety and it's apparent it's exacerbating some previous anxiety related symptoms and from what you're saying here, nearly immobilizing you.
Perhaps your girlfriend can help by looking into some intervention to help you? It seems you're just spiraling deeper and deeper :weep:
Positive thoughts
Hey Fishmanpa
You're almost right, it's not nearly, but completely immobilizing me.
I fully understand that what I'm doing is causing me to 'spiral(*) deeper and deeper', but I just can't stop. I feel as though everyone is looking at this all wrong. When they see my name come up, it's not "what's wrong with you today.." it's "So what has anxiety done to you now..". I hate it.
I feel the more I try to help figure out my problems or seek reassurance, the harder it is to open the door.
My girlfriend is convinced it's stress and anxiety and I can't blame her. She's been doing everything she can for me as well as take on the responsibility of working for us to get by. I feel terrible due to this.
I feel as though from now on, I won't be taken seriously anymore. And that the more I wait, the further my chances are of getting through this.
I'm sorry if you think I need to get a grip. I wish I could believe everything the doctors tell me, but I'm constantly in the mindset of 'what about now...'.
---------- Post added at 11:20 ---------- Previous post was at 11:16 ----------
But your leukaemia fear is surely related to your radiation worry?
Not sure how anyone can reassure you any more than we already have, Kopesy. Are you able to speak openly about your fears with girlfriend and family? It's sad that you're not getting the help you so desperately need.
Hey KK77
You're not wrong. It certainly is. Now that it's been almost 10 weeks, the effects might be seen now.
I only have my girlfriend with this. She's been great, bless her. I'm ashamed that I'm not able to get through this the way everyone wants me to. Don't get me wrong in saying that.. I want to as well, but I'm just not convinced like everyone else seems to be.
The onset of more and problems I thought were gone are growing more now, which doesn't help me to not think about it.
I'm an absolute mess. To look at myself now I feel like stranger in my own body. I've gone from extremely active and healthy to a lazy slob that doesn't look after himself. It'd a complete turnaround.
I want this year to start over :(
---------- Post added at 11:48 ---------- Previous post was at 11:20 ----------
Hey people
So the last few days have been awful. The itching is still ever-present and now my toilets have become bloody. The only positive I'm trying to take from it is that the blood appeared pretty bright, which is better than dark. Though there was quite a lot.
I went to my GP and told them about this, as well as a brief over-view of my other 'symptoms'. I chose another GP in the hopes that she wouldn't have her mind already set that it's anxiety/stress, and actually listen to me. Not itching for me to finish and say 'anxiety'. It used to make me feel really small and silly when they did/do that, but more recently it's made me very angry. I'm not an aggressive person in the slightest, but I couldn't handle another one of those consultations.
The new GP was nice, she listened to what I said, but unfortunately she'd read my files beforehand and alas, made up her mind without really considering the foremost issue I'm having..
Now I understand that I've had a bout of anxiety in the past. Yes the scans came back clear, and I openly admit that things got a little out of control. Not that I did anything outrageous to be honest. I only had a head scan, two in actuality, but for the same thing on the account that I couldn't wait 2 months for the mri. (How I wish I'd had the patients). And I've had recently just the one blood test. To me, over 2 months, that isn't thaaaaat much I've had. However, this is besides the point. The new symptoms, although tied to my initial fears of radiation, are none the less happening. Bloody/yellow stools, itchiness everywhere, little red dots on the skin, the ever present fatigue, this time much worse and now, though not seemingly related to my particular fears, fissures have appeared on about a third of my tongue from the tip. This is also a continuation of my mouth problems with my gums rapidly receding and taste loss that's been here for a month now.
I just want to know I'm okay now. I feel like my words are wind and I'm invisible. No need to look at me now because the not-so-past says anxiety. I don't want to keep being written off as a classic case of anxiety. I know I have my problems with health anxiety, but that doesn't make me immune to actual problems.
I'm really struggling right now. I'm less jittery, manic and teary, but that's just been replaced with defeat, apathy and exhaustion. I'm still just as scared, if not more so. That this fearful little boy has cried wold one too many times.
Hey Fishmanpa
You're almost right, it's not nearly, but completely immobilizing me.
I fully understand that what I'm doing is causing me to 'spiral(*) deeper and deeper', but I just can't stop. I feel as though everyone is looking at this all wrong. When they see my name come up, it's not "what's wrong with you today.." it's "So what has anxiety done to you now..". I hate it.
I feel the more I try to help figure out my problems or seek reassurance, the harder it is to open the door.
My girlfriend is convinced it's stress and anxiety and I can't blame her. She's been doing everything she can for me as well as take on the responsibility of working for us to get by. I feel terrible due to this.
I feel as though from now on, I won't be taken seriously anymore. And that the more I wait, the further my chances are of getting through this.
I'm sorry if you think I need to get a grip. I wish I could believe everything the doctors tell me, but I'm constantly in the mindset of 'what about now...'.
I don't feel you need to get a grip. I fully realize based on your words that you're not capable of doing so at this point. If it were as simple as that, mental illness would not exist. That's why I suggested professional intervention. As suggested, perhaps your girlfriend (who recognizes this as stress and anxiety) can help you by getting you professional help?
Positive thoughts
Hello everyone
If you've seen my post in the health anxiety forum - Ct radiation overdose/liver problems, then you'll know why I might conclude the onset of either of these diseases.
I've experienced a large number of symptoms that relate heavily to both of these..
Fatigue - Enough to have me fall asleep multiple times during the day and continuous early night and late mornings getting up.
Lymph nodes - I've become aware of a few lymph nodes on the body. Two or three either side along the groin, and a couple either side along the jaw.
Stomach/Ribs discomfort - I feel discomfort in my stomach and just below the right-hand side of my ribs. The sensation can come as a feeling of fullness, to a fist-like ache. Sometimes when I feel like burping I bring up a watery sick instead.
Petechia - I've notice a few outbreaks of small bleed dots on my thighs and around my eyes. They come in a small group/band and usually disappear after a couple of days.
Itchiness - I have small itches constantly about my body. It's very generalized and constant.
Joint pain - I've had a slight continued ache in my right knee. It's especially bad if I extend it from a bent position after some time, like sitting up in bed.
Hot flushes - I've been having a few hot flushes now and then, especially during the night. They usually last a few miniatures before subsiding.
Bad toilets - While i'm not sure that this is related to either disease, I have been having yellow/loose toilets again. I've also noticed blood (bright red) on them during the last few times I've been.
While I did have a full blood check that came back normal over a month ago, I fear that something sinister has progressed during that time. I've offered the possibility to my GP to which I've been told the bloods from over a month ago should conclude a negative against my assumptions towards these fears.. They do not, nor was I having any of these symptoms then except for fatigue.
I'm really worried these symptoms are likely to be either Leukemia or Lymphoma. :weep:
nomorepanic
28-04-18, 23:44
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
I also forgot to mention that I've recently found I have a white line runing across all my nails, about 1-2cm from the white top part. I doesn't appear to disappear when I push down on it.
Sorry for constantly posting..
I'm absolutely scared out of my mind right now!
I can't stop thinking that this is the beginning of the end :weep:
This would all but confirm that I indeed had a radiation overdose.
I really didn't think I'd have to worry about any of this until at least a couple of years.
Sorry for constantly posting..
I'm absolutely scared out of my mind right now!
I can't stop thinking that this is the beginning of the end :weep:
This would all but confirm that I indeed had a radiation overdose.
I really didn't think I'd have to worry about any of this until at least a couple of years.
I would suggest printing this thread out and taking to your doctor or to the hospital. Nothing we're saying here is helping. You need real life help.
Positive thoughts
Kopsey, I honestly agree with FMP. Someone, someone medical needs to help you right now. Printing out this thread (or copying and pasting all the posts you've made related to the radiation issue onto a word document, because I think there have been a few theads about it) and the long series of thoughts you've added to it would be a pretty good plan....as everything worrying you is written down in detail here. Who can you turn to for mental health support right now? I know you've said that the GPs are not sympathetic to your plight, but you are waiting for counselling ? Do you have an emergency number to ring for mental health services ?
Hey guys
I'm going to be going to A&E tomorrow morning. The petechiae has gotten a lot worse.
I'll let you know how it goes..
Kope.
OK Kopsey....let us know how you go. All the Best
So I got back from the hospital a couple of hours ago. I wasn't tested for bloods. It's something that can only be done through my GP.
To be honest, the guy I spoke to was a really nice chap. He totally understood my concerns and wasn't too happy when I told him what my GP had told me during the last month.
I'll be going to said GP tomorrow and requesting at the very least, a CBC red/white at the request of the surgery I was diverted to through A&E.
He noticed that while I do indeed have some petechaie and that my lymph nodes are indeed felt around my groin area, that everything else - blood pressure, temperature and physical, were all pretty normal.
I won't lie, I'm still extremely nervous. I'm very sorry if I've in any way seemed rude due to the fact you might not think I'm taking into account what you're saying. I really don't feel like 'me' at the moment, and I'm prone to going off on one, as it were.
I'm hoping to be proven the biggest, most foolish guy with massive health anxiety issues. It just seems that when I start to feel slightly optimistic, something else happens that joins the pieces of the foreboding puzzle that is what I seem to believe is, my ill-health.
Thank you all for your replies, and I hope to come back with something possitive to say. (I'll probably come back before then with a freak out, so please, be patient with me ^_^ )
Kope.
Kopsey, you have honestly not been rude at all, not even in the slightest. I mean that; and neither does it feel like you've 'gone off on one' - ok you sound anxious and deeply upset, but in relating to people who reply to you you have been so courteous.
OK, so when he did a 'physical' what other things did he look at - apart from BP and temp ? Did he look at some of the other things that you felt were there as symptoms ?
Did he give any idea about the petechaie and lymph nodes, or reason for that ? I guess there could be some infection or illness underlying NOT related to radiation :winks: which could cause that ? The doctors taking bloods should give some indication about whether there is any merit in that theory.
I too sincerely hope that very soon you are able to be shown to be 'having a massive HA melt-down' rather than anything more serious. Good luck with that GP of yours !!!
Thanks, Carys :)
It was a pretty routine check. Apart from the petechiae and lymph nodes there wasn't much more he could do. I spoke to him about the taste loss and the fissures that have appeared on my tongue, but he didn't seem to know what that could be.. in fact, nobody I've spoken to yet can give me any answers, not even the dentist.
I've booked an appointment with my GP today for 9:10am, and I'll ask for blood tests, which I'll have taken at the hospital so as to have them done as soon as possible.
I know radiation sounds absolutely crazy, and I hope.. I WISH that that's the truth of it. I just can't let go of the idea that it is the case, though. The actuality of it happening sounds illogical, but what happened after, and the symptoms I have been having.. if someone were to have had RT or the like, then it would seem pretty reasonable that what I'm going through could be attributed as radiation.
I don't know.. I'm a bag of nerves. I've never been so fearful in my life.
I'll let you know how it all goes when I can.
Kope.
If other medics are seeing these symptoms you are describing, then some sort of set of checks need to be undertaken I agree.
Hello
So I've just gotten back from the hospital after my GP gave the go ahead for the blood tests.
Now I just have to wait.. :unsure:
---------- Post added at 14:13 ---------- Previous post was at 11:22 ----------
So, as I sit here freaking out waiting for my blood test results..
Has anyone else suddenly noticed lymph nodes on both sides of their groin, and if so, is it normal?
Are you actually sat there waiting for them, or will they take a few days ?
I'm at home.
Every blood test I can remember when having them taken at the hospital's dedicated blood taking unit, I've had the results the same day.
What have you been told they are testing for ?
Cell count and blood chemistry. I made certain to mention testing for leukemia and lymphoma. He said it's the whole thing. I had four vials taken.
Still heard nothing back from either the hospital or GP..
Oh good - so it should cover everything that concerns you.
Oh good - so it should cover everything that concerns you.
Why yes indeed!
I'm just hoping it all clear and positive.
I never thought I was this anxious a person until this year. I'm not far off 30 and I feel like a baby child :/
So it's been almost 24 hours and I've still not heard back from either the hospital or GP.
I'm hoping the lack of news is a good thing?
Did they say they would ring you with results, or send them to your GP ? I know this whole results thing is a bit of a pain as depending on how and where you have them different processes kick in to give results. Or were you meant to ring ?
---------- Post added at 09:42 ---------- Previous post was at 09:39 ----------
I suspect thte fact its been 24 hours means nothing really....either good or bad :winks: It could be the requested types of testing is taking a bit longer, or the people resident in hospital have priority and they haven't go there yet. It could be that they are really busy and haven't even got to them. OR your GP has results and will ring ?
I wasn't told, but I've always gotten a text message, whether they were taken at my surgery or directly at the hospital. I guess it's something the Northampton General does.
Oh a text to say they are done and to ring them....or a text with results ?
If they're clear it's always come up with something like 'no action required'. Ive never had any different so I wouldn't know what happens if they're not okay.
---------- Post added at 09:55 ---------- Previous post was at 09:50 ----------
I've just never had to wait this long before, so it's making me quite nervous.. :unsure:
Oh right....gosh thats different.....we don't have that down our way. :D Yeah, I can see that making you nervous. Either way, good or bad, you are finally getting things done.
It's only been a day since you had the blood tests though? The only time I ever had results back the same day was when I was actually in hospital
Yeah, the last couple of times were pretty sharpish.
The last one I got taken at the hospital actually came back to me on the bus ride home after the test. We're talking about 2 hours!
---------- Post added at 13:11 ---------- Previous post was at 12:51 ----------
I'm going to try calling my GP in case they've got them already..
---------- Post added at 13:36 ---------- Previous post was at 13:11 ----------
Okay. So everything was normal apart from my TSH count.. I've read that's to do with the pituitary gland at the bottom of the brain.. now I'm really scared this is going to be a tumor :weep:
Or it could just be that you have a thyroid problem that needs treating? :winks:
Some of your symptoms would certainly be accounted for by thyroid acivity levels being not quite right.
So, whats the plan with the GP now ?
Possibly.. but aren't naturally occurring thyroid problems usually associated with women?
As a 28yo male who has been in excellent shape prior to the last couple of months, it does seem rather strange.
I'll make an appointment with the doctor tomorrow morning.
---------- Post added at 16:43 ---------- Previous post was at 14:55 ----------
Does anyone know if stress/adrenaline fatigue can affect TSH level?
I'd say you are probably more likely to have hyperthyroidism- an overactive thyroid-which can cause extreme anxiety but thyroid test results are notoriously problematical and different labs give different guidelines as to what is normal.
Both men and women can have thyroid issues-not that you necessarily have. Best to discuss the results with your GP.
Yep, you really need to get back in to that GP - this needs some discussion and to find out what the levels are, what they mean, and what the cause could be, if anything? Pulisa is right, thyroid problems are more common in women, but do also occur in men (also I'm not saying you HAVE this problem :winks:)
In answer to your question about 'does anybody know', the answer is I personally don't know (somebody else might) but I did a wee bit of safe googling on your behalf and it seems that many places do talk about the link between stress levels and thyroid...
A delicate balance between stress hormones and cortisol must exist for proper thyroid function. If this delicate balance changes, your thyroid symptoms may increase.
Taken from 'healthline'.
Tell me about it....:winks:
Yeah - a bit of an expert right now on those 'thyroid symptoms' aren't you P :weep:
Not sure if it's high or low yet.. I'll speak to my GP about it tomorrow.
Yeah, Pulisa, it's strange because I share symptoms between the two of them, although much more on the side of 'Hyper'.
My girlfriend had been diagnosed with 'Hypo' during a blood test, and told she might need meds for life, only for him then to dismiss it during a second run of tests. It's strange how it might fluctuate like that.
Thanks, Carys. It's something to consider. I'm holding out for it really. Going back to my original post about radiation damage, I know that both the pituitary gland and thyroid are susceptible to damage and possibly thus..
---------- Post added at 18:07 ---------- Previous post was at 18:05 ----------
Yeah - a bit of an expert right now on those 'thyroid symptoms' aren't you P :weep:
If you don't mind my asking, Pulisa.. is this something you're going through or have been through in the past?
As Pulisa is my buddy, and she's not on NMP as much as usual, I'm sure she won't mind me posting this link to her current thread...
http://www.nomorepanic.co.uk/showthread.php?t=216798
Please don't go thinking you've got the same thing though, Kopesy?
I'm an ageing relic and not a fit and healthy man in the prime of his life:D
Oh yeah, sorry, I forgot to add that she's an ageing relic, which she is, and you don't have the same thing. :yesyes:
I do still have my own teeth though....
....in your mouth ? (or in a jar somewhere?)
Last time I looked they were in my mouth..
Haha! I can tell you two are friends :D
Have you had any news about the biopsy yet, Pulisa? I've read that benign growths on the thyroid are actually rather common.
I've just gotten back from my surgery. The GP was a stand-in while my normal GP is away. It's a shame really, as this new guy was really good.
Everything about the blood is fine apart from a slight increase in TSH production. He wasn't too concerned however, as it only goes above the normal by a little bit. My T4 levels for my thyroid were both normal.
He told me to get checked in a couple of months time to see if it was just a fluctuation, as I mentioned I'd been very stressed these last few months.
My TSH level is 4.4, with 0.4 > 4.0 being what is considered 'within normal range'.
It's interesting, as I saw it compared to my previous results since my first blood test back in 2003..
It read something like..
2003 - 2.0
2013 - 3.0
2018 Jan - 3.8
2018 March - 4.0
2018 April - 4.4
So it's been increasing all the while. My only concern is how much it's increased in such a short amount of time since Jan. I wonder if chronic stress or adrenal fatigue can cause spikes in TSH levels??
That is interesting about the gradual changes over many many years - maybe you are heading towards needing thyroid meds? Anyway, you re going to go back see him. I'm glad you had a positive experience with this locum this morning. Soooooo, Kopsey, are we at the point of saying that there was no radiation issue ?
Unfortunately not, Carys.
The fact that my T4 levels were fine indicates that it might be more related to the pituitary gland, which is below the brain.
I've read that radiation can cause increased production of TSH due to possible damage.
It's interesting that my TSH was 3.8 before I had the CT scan. In which case I'm holding onto hope that it's because of all this stress, but I've not seen any real evidence that that might be the case.
I'm sorry, but I still can't let this go. If anything, the results of this test indicates my radiation idea more strongly.
I've got my Neurologist appointment next month. Maybe I'm able to have another blood test around that time to see if there's any increase/decrease (I hope) in TSH levels then.
I'm due a call with the head of Radiology sometime in the coming days when she's free. Hopefully I'll find something out then.
Oh ok :weep:
So, how did you manage to secure the call from the head of radiology?
---------- Post added at 15:23 ---------- Previous post was at 15:21 ----------
.....but the levels have been gradually increasing since 2003?
I've emailed through PALS and they've contacted her.
Yes it's increased, but it's the duration of time and amount of increase that's the concern.
Over 15 years it had increased by 1.8 and yet post CT scan it's increased from 3.8 - 4.4. That's 0.6 in only 3 months. When compared to the previous 15 years, Which is an increase of 0.6, but over 5 years.
I'm just hoping all the stress, change in lifestyle and slight change in diet is contributing.
---------- Post added at 15:48 ---------- Previous post was at 15:47 ----------
I know I'm a pain, but I'm someone who looks into every detail :unsure:
I know I'm a pain, but I'm someone who looks into every detail :unsure:
:roflmao:Its fine, you obviously can't move until you feel everything has been covered, discussed and resolved. Glad PALS worked for you !
Ahhhh! :weep:
I can't take this anymore..
I've now gone back to thinking that I've got pancreatic or liver cancer.
My toilets have gone bad again, being yellow, soft/gloopy with occasional blood. I've got a constant acidic and hard feeling in my stomach, with almost constant discomfort in and below my right ribs.
With my lymph nodes raised I'm starting to think I've been ignoring the issue I had from the very beginning, and that the cancer is now too far gone and has spread to those :weep::weep:
---------- Post added at 11:08 ---------- Previous post was at 11:00 ----------
I just can't help but think I've been my own worst enemy all this time. That having so many other symptoms has led me astray from the real issue.
I just don't know where to go and what to do anymore.
With my lymph nodes raised I'm starting to think I've been ignoring the issue I had from the very beginning, and that the cancer is now too far gone and has spread to those :weep::weep:
You've had vials of blood done this week, loads of testing and there was only one slight discrepancy....nothing else showed.
You've had vials of blood done this week, loads of testing and there was only one slight discrepancy....nothing else showed.
HA doesn't show up in blood work :lac:
Positive Thoughts
HA doesn't show up in blood work :lac:
Positive Thoughts
Very true.
What a shame you got a printout of your blood work. Guaranteed to give you a whole new set of pointers towards what could be "wrong".
Believe me, I'm probably at the same level of HA as you are at the moment but you have to put a check on it for your own sanity
Your blood tests are fine. Your mind is playing tricks with you-if you continue to feed it ammunition your HA will lead you into a state of utter and complete panic and agitation. It's a horrible state to be in.
It certainly is, Pulisa. I absolutely hate my way of thought right now.
I get something mostly positive, thinking it'll quell my mind for a while.. and then I'm straight onto the next thing!
It's not as though it's something made up, but damn.. I wish I'd give myself a break sometime :doh:
Annaboodle
15-05-18, 17:21
Hi Kopesy, I just wondered how things were going for you? I hope a bit better.
Anna
Hello Anna
I'm afraid not. Things have gotten much worse actually. The lymph nodes have gotten larger. The one on the left especially so, it doesn't move at all. There's also a smaller circular one above it now, too.
My headaches and fatigue is much worse. I just want to sleep everything away. :weep:
---------- Post added at 19:20 ---------- Previous post was at 19:16 ----------
So I've tried to keep off here for a little time to see if it helps, but things have gotten even worse than before.
I'm struggling more than ever. My lymph nodes have gotten large, my headaches and dizziness much worse, and to top it off, I was given the details about my CT head scan, the one I believed to have given me radiation damage, and they gave me information I know to be incorrect. I was told it was performed in the same room I had my abdominal scan recently. I know this is completely false.
Now I'm even more scared as to why they're not telling me the truth! The only reason to would be to cover something up. I'm really tired of it all. I just want to know, no matter how bad it is. I have no idea what to do. :shrug::weep:
---------- Post added at 19:41 ---------- Previous post was at 19:20 ----------
I really can't do this anymore
Hiyer Kopsey,
Is your doctor monitoring your lymph nodes at the moment? I thought that was the plan.
Hello Carys o/
It still is the plan. He's been away the last couple of times I tried to make an appointment. I've decided to only go through him and not through another doctor.
I was told he'll be in morning and afternoon on Monday.
I also have my CBT at 9.45 tomorrow. Not sure how it'll go. I don't really know what to expect. I feel kind of silly considering I'm a 28yo man, but hopefully it might help a little.
I've also emailed the head of radiology back explaining that the information she gave to me is in fact incorrect. I was polite of course. I hope she can explain a little better.
So just got back from CBT an hour ago. The guy I spoke to was really nice. He understood my concerns and realized that what I'm struggling with isn't a typical case. I've spoken to the head radiologist at my hospital a few times now and she has lied about the details of my scan every time. My therapist is going to talk to his supervisor on Thursday about arranging something with the hospital to get to the bottom of this.
My biggest concern right now are these enlarged lymph nodes. They have continued to get larger, and I've continued feeling really unwell. I've had an increased thirst as well as going to the toilet more. My knees, fingers and ribs keep aching and my lower back keeps giving out.
I have an appointment with my GP this afternoon. I don't know if I'll be able to, but I'll request a possible bone marrow biopsy, which would show any problems if it's radiation induced/related.
I've spoken to the head radiologist at my hospital a few times now and she has lied about the details of my scan every time.
So the head of radiology is lying to you about the scan you think exposed you to radiation? Well, one thing is for sure then. You'll have a major lawsuit on your hands and stand to make a load of money!
FMP
---------- Post added at 08:14 ---------- Previous post was at 07:56 ----------
Let me get this straight. You're sure you have been exposed to radiation due to a freak event at your 1st CT scan which has resulted in all the physical symptoms you're experiencing. Despite that, you went for a 2nd CT scan which turned out normal and had bloods done which were normal.
But you have in writing that the head of radiology has lied to you? What exactly is the lie Kopesy?
FMP
The lie is about my first scan - the head scan. Firstly, that the scan was routine and without any problems, and secondly, where the scan was done and what machine was used.
I know the room I had my head scan was completely different to the one I had for my second scan. I've spoken to the radiologist and she's told me that I was in the same room and used the same machine. This is false. All the information regarding my head scan is incorrect due to it being the details of a machine I did not use.
Ok then. Well good luck and good going with the CBT. Do the work! It's worth it!
FMP
Okay, this is just getting a whole lot worse.
My lymph nodes are continuing to grow, I'm constantly tired, I have a continuous headache 24/7 and no matter how much I drink I'm still so thirsty.
I've now just noticed a big patch of petechiae with a bruise, that which I haven't knocked or hit into. My mouth is also having more and more of these little red.
I know how crazy I must sound to you all, I'd think the same if I weren't experiencing all this. My life has pretty much regressed to just this. If I try to get away from it something else happens again! It's relentless.
My concerns right now are as last told, some sort of blood/bone cancer as I know these are the one first seen after radiation exposure. I've been having a lot of symptoms regarding these since last month. My blood results have all been normal except and increase in my TSH hormone which is now 4.4, meaning I now have slight hypothyroidism, although my GP wants to wait until medicating it. However, I've been noticing a lot of bone/joint pains, enlarged lymph nodes and petechiae/bruising. My biggest concern is Myeloma and Lymphoma, with the former being the scariest thought. Both having evidence of being radiation induced.
I'm so exhausted and scared :(
The OP hasn't logged on since the end of August last year. I imagine he survived ;)
Positive thoughts
Hi Fishmanpa
I had been reading this post and just wondered what happened to him.
I didnt realise it was so long ago!
xx
Yeah... all posts are date and time stamped in the upper left. I'm sure he's fine as he survived pancreatic cancer too :)
Positive thoughts
That's amazing! :scared15::scared15:
:whistles::whistles:
Hey,
So it's been a while since I last posted here. I've been trying to keep away from anything to do with health and the like to try and help calm my mind. Recently however, I've become really concerned about a lump I found on my left tonsil, so much so that my HA has boiled over despite my best efforts keeping it in check. I've come here just to see if anyone here has experienced anything similar.
So, I noticed the lump a few days ago. It started with me waking up and feeling as though I had something stuck at the back of my throat/tongue. To describe it, it looks round/oval shaped, pink fleshy looking, not too dissimilar to the tonsil itself, although perhaps slightly lighter/paler in colour. It sits on the lower half of the tonsil.
The day before yesterday I noticed my lower jaw on the same side (left) began frequently twitching a lot, and feeling strange, like not so much pain, but somewhat tense. The best way I can describe it is quite akin to the feeling you get when you suck on a sour sweet.
Then yesterday, there is now a very small lump, which I can only assume is a lymph node just above my jaw line below my ear. Again, this on the left side where I had a lot of twitching. The twitching has abated almost entirely since, though, I'm still experiencing a slight tense feeling there still, as well as some slight aches in my throat, which may or may not be due to me concentrating on that area.
A couple of weeks prior to this I began noticing slight ear aches and quite frequent tinnitus spikes, as well as a more than usual loss in appetite, headaches and general lethargy.
I've felt the lump myself, with very clean hands of course, and didn't feel any pain when touching it. The lump felt quite firm and didn't move all that much.
It might be worth mentioning that I'm about 3 weeks away from seeing an ENT due to a consistent lack of smell since the beginning of the year. With my sense of taste (flavours) being 95% lost to me since the beginning of last year. How relevant that is to what's going on now, I'm not sure, but I've found nothing to suggest an obvious relationship to these new goings-on.
Considering my background HA due to happenings with radiation exposure Feb last year (I won't go into that!), everything worries me exponentially to what could be symptomatically 'C' related. I've been doing my best to remain as calm as possible. I'm quite proud of myself all things considering (allow my self-boasting if you will).
Anyway, like I've said, I'm to see an ENT in the next few weeks, so I'm holding out on going to the doctors right away, as knowing them, they'd just tell me to wait until I see the ENT. I just wanted some feedback from you guys until then.
Thanks for reading. :)
Hey,
Sorry, I'd not gotten any notifications and had promised myself that unless otherwise I'd stay away from anything HA related or searching nasties on the internet.
Since my last post here I've gotten better in my head, although I wish I could say the same for my symptoms! They've just kept on coming, but I've somehow resisted the urge to let it consume me (a couple days here and there permitting). I think it has been a combination of trying to control my anxieties and being on Sertraline almost a year now! (Wow, times flies).
The biggest new symptoms this year are loss of smell and more recently a lump on my left tonsil, followed by a presumed swollen lymph node on my left jaw-line. I just made a new post detailing it here.
Hope everyone here is doing well. :)
nomorepanic
20-05-19, 12:59
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Hi Kopesy,
Can I please ask how you’ve been feeling now? I hope your feeling much better!
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