View Full Version : Terrified about likely rheumatoid arthritis... life expectancy
MobileChicane
18-09-22, 16:33
So I asked some people about my severely receding chin, and it's kind of sent me on a rabbit hole by seeing exactly what has caused it, and considering my other symptoms it's very likely that I have Rheumatoid arthritis. Even worse is that I'm only 27, if it's starting now... just how long am I going to live for?
I've got a receding chin that's likely Idiopathic Condylar Resorption, I've been told "ICR is often linked to autoimmune conditions like RA. Given your other joint-related pains and symptoms, I recommend you see a doctor and possibly a rheumatologist to rule out/in autoimmune conditions, in addition to seeing an OMFS for your jaw."
My main symptoms in addition to my receding jaw are:
Constant clicking and stiffness in joints in fingers, elbows, and knees.
Extreme tiredness/fatigue that doesn't seem to be helped by sleep.
When I do wake up, I find it a struggle to actually want to get out of bed. Often as soon as I start to get up, I feel like I wish I was back in the bed again.
Random pains in my joints, sometimes coming and going.
Frequent urination, needing to pee often.
I am pretty terrified at this point. Does anyone have experience with this disease? And getting diagnosed with it at a young age? I am terrified my life expectancy will be severely reduced and my quality of life being reduced. I'm also scared about the NHS backlog and not being seen before this gets any worse. I've got a booking with my GP for the 30th, but I wish I could be seen sooner. Are there private blood tests for RA that I can get done now?
MobileChicane
19-09-22, 00:58
Please somebody I am so scared.
You will be ok. See a rheumatologist and they will sort you out if it is RA. It won’t change your life expectancy of you take control of your stress and eat well- check out the autoimmune protocol for diet ideas. I was diagnosed with psoriatic arthritis when I was 28 (had symptoms for 6 years prior). I’m now 35 and still doing well. I don’t think much about my arthritis most of the time - diet helped with this.
My health panics are elsewhere now and autoimmune disease seems like a cake walk comparatively! You will be ok.
MobileChicane
19-09-22, 17:12
I'm starting to get worried about mitochondrial disease too. What if this crepitus continues to get worse? To the point where I'm bed-ridden?
Just a follow up to your original post- I re read what you said. You said “I’ve been told” and “they said” who exactly is diagnosing you? Is this a doctor?
MobileChicane
20-09-22, 16:58
Does anyone else have experience with crepitus in a lot of your joints?
WorryRaptor
20-09-22, 18:05
Does anyone else have experience with crepitus in a lot of your joints?
I sound like a bowl of rice crispies when I move. What I've seen for a lot of autoimmune issues, is that many of the symptoms and associated inflammation can be reduced by diet and lifestyle changes. My mother has an autoimmune disease which attacks her intestines and causes her vagus nerve to inflame, then misfire, and make her pass out, but she manages it completely through diet and avoiding specific chemicals that trigger it. I probably have something autoimmune going on too, given my butterfly rash, headaches, fevers, bouts of horrific fatigue, intolerances, joint pain etc. I don't think its common for autoimmune diseases to significantly reduce life expectancy, and even for some that do, those numbers improve year by year with new treatments becoming available, and better understanding of how to manage each one.
It's worth getting a referral to a rheumatologist if you're concerned. Your GP might do some blood tests first to see if anything gets flagged up. They might look for inflammation, or antibodies that could signify RA.
MobileChicane
20-09-22, 19:24
With my all-bidy crepitus and nonstop aching back, chronic fatigue, and TMJ, I'm fairly certain that I have some sort of arthritis, probably rheumatoid. I'm 27 so I am worried that it's going to get bad real quick. Does anyone have experience with this? Have you been treated successfully and live normally?
Just looking for some hope.
So I asked some people about my severely receding chin, and it's kind of sent me on a rabbit hole by seeing exactly what has caused it, and considering my other symptoms it's very likely that I have Rheumatoid arthritis. Even worse is that I'm only 27, if it's starting now... just how long am I going to live for?
I've got a receding chin that's likely Idiopathic Condylar Resorption, I've been told "ICR is often linked to autoimmune conditions like RA. Given your other joint-related pains and symptoms, I recommend you see a doctor and possibly a rheumatologist to rule out/in autoimmune conditions, in addition to seeing an OMFS for your jaw."
My main symptoms in addition to my receding jaw are:
Constant clicking and stiffness in joints in fingers, elbows, and knees.
Extreme tiredness/fatigue that doesn't seem to be helped by sleep.
When I do wake up, I find it a struggle to actually want to get out of bed. Often as soon as I start to get up, I feel like I wish I was back in the bed again.
Random pains in my joints, sometimes coming and going.
Frequent urination, needing to pee often.
I am pretty terrified at this point. Does anyone have experience with this disease? And getting diagnosed with it at a young age? I am terrified my life expectancy will be severely reduced and my quality of life being reduced. I'm also scared about the NHS backlog and not being seen before this gets any worse. I've got a booking with my GP for the 30th, but I wish I could be seen sooner. Are there private blood tests for RA that I can get done now?
So this is all based on "what you have been told" by randoms online rather than by an actual doctor in real life?
ankietyjoe
21-09-22, 10:05
You've already asked this question in your other thread, where you've had answers you haven't acknowledged.
nomorepanic
21-09-22, 11:28
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.
MobileChicane
21-09-22, 12:14
I sound like a bowl of rice crispies when I move. What I've seen for a lot of autoimmune issues, is that many of the symptoms and associated inflammation can be reduced by diet and lifestyle changes. My mother has an autoimmune disease which attacks her intestines and causes her vagus nerve to inflame, then misfire, and make her pass out, but she manages it completely through diet and avoiding specific chemicals that trigger it. I probably have something autoimmune going on too, given my butterfly rash, headaches, fevers, bouts of horrific fatigue, intolerances, joint pain etc. I don't think its common for autoimmune diseases to significantly reduce life expectancy, and even for some that do, those numbers improve year by year with new treatments becoming available, and better understanding of how to manage each one.
It's worth getting a referral to a rheumatologist if you're concerned. Your GP might do some blood tests first to see if anything gets flagged up. They might look for inflammation, or antibodies that could signify RA.
Unfortunately the process is slow and delayed. Well I'm booked in for blood tests for rheumatoid factors and something related to muscle inflammation. Could I just ask, looking at your post history you have Hypermobility?
Did anything ever come of this for you? I'm worried that these hypermobile joints will likely lead to EDS and craniocervical instability. Just looking at these stories...
https://www.dailymail.co.uk/news/article-4555814/Samantha-Smith-surgery-needed-save-life.html
https://www.chroniclelive.co.uk/news/north-east-news/the-nhs-given-up-me-13700458
https://www.ehlers-danlos.com/in-memoriam/
I'm so scared man.
ankietyjoe
21-09-22, 13:16
So you're saying you are self diagnosing via Daily Mail articles?
MobileChicane
21-09-22, 13:29
No, but my symptoms line up exactly. These are 1 for 1 symptoms of EDS which is deadly. I'm terrified.
Pause and breathe. Your imagination is running away with you.
No, but my symptoms line up exactly. These are 1 for 1 symptoms of EDS which is deadly. I'm terrified.
Most people with rampant HA swear that their symptoms "line up directly" with the feared diagnosis. Based on their own "research".
MobileChicane
21-09-22, 14:15
Most people with rampant HA swear that their symptoms "line up directly" with the feared diagnosis. Based on their own "research".
But they do, my fingers, elbows, knees, and jaw/neck crack all of the time. I have a clear case of hypermobility; my fingers go back way further than they should and people have pointed this out. My kneecaps wobble. I have pain in my lower joints and muscles whenever I'm in stationary.
Everything seems clear when you have HA, but your insight is distorted by your delusions.
WorryRaptor
21-09-22, 15:27
Unfortunately the process is slow and delayed. Well I'm booked in for blood tests for rheumatoid factors and something related to muscle inflammation. Could I just ask, looking at your post history you have Hypermobility?
Did anything ever come of this for you? I'm worried that these hypermobile joints will likely lead to EDS and craniocervical instability. Just looking at these stories...
https://www.dailymail.co.uk/news/article-4555814/Samantha-Smith-surgery-needed-save-life.html
https://www.chroniclelive.co.uk/news/north-east-news/the-nhs-given-up-me-13700458
https://www.ehlers-danlos.com/in-memoriam/
I'm so scared man.
I've recently been referred to investigate hEDS yes, but for now have been diagnosed with hypermobility spectrum disorder. Unfortunately, this process is slow too, and I'm looking at an 18 month wait to be seen.
I'm worried that these hypermobile joints will likely lead to EDS and craniocervical instability.
Keep in mind that hypermobility and joint pain doesn't always = Ehlers Danlos. Some people can simply be hypermobile with painful joints as a result of overextending those joints past the point where a normal person would have a "stop". 20% of the population is hypermobile, and doesn't have EDS. EDS is genetic, and I have a strong family history of people who displayed the symptoms and comorbidities of hEDS. It involved a lot more than painful, hypermobile joints.
Now, you say it's deadly. Ehlers Danlos is not deadly, unless it's the vascular kind, which is incredibly rare. It comes with symptoms and physical signs that would be very obvious, and you would have had a vascular related event by now. (And even if you have all the obvious signs for this, it almost always ends up being a non lethal variant of EDS because the symptoms have a lot of crossover)
Most people with Ehlers are diagnosed with hEDS, which is not deadly, and for many, will only cause mild symptoms throughout a persons completely normal lifespan. You're jumping to catastrophes here. You haven't listed symptoms that would immediately make me think of EDS or CCI. You sound like you're hypermobile yes, and you may have some pain with that, and perhaps some low grade inflammation. But none of that adds up to the conclusions that you're afraid of.
I've also been told that I have some cervical instability after yet another scan, and my physiotherapist gave me neck stabilising exercises to follow, which are helping quite a few symptoms. That's what the majority of CCI or CI cases amount to. It doesn't just progress to the worst case scenarios, and my neck is RIDICULOUSLY hypermobile. I spent a considerable amount of time thinking I must be one of the serious cases. I'm talking about laying the back of my head flat against my back/shoulders, and practically turning it like an owl with no obvious stopping point. I've got bulging discs in my neck too, and a while slew of symptoms that make it seem like my central nervous system is going through a rebellious phase. And still, my instability isn't considered life threatening, even with all of that.
Those articles that you shared are situations that are exceedingly rare, even if the person is genetically predisposed to joint instability. CI and CCI are pretty common in people with EDS or people with HSD, yes, but that instability rarely leads to the catastrophic situations the people in those articles are in. I'm saying this as somebody who had an aunt who died due to craniocervical instability, yet the risk of it progressing for me is still incredibly low, to the point of not even worrying about it.
MobileChicane
21-09-22, 15:32
I mean, Vascular EDS is what I'm really worried about, one of the key symptoms of this is a small chin and bruises out of nowhere... which I have.
WorryRaptor
21-09-22, 15:33
I mean, Vascular EDS is what I'm really worried about, one of the key symptoms of this is a small chin and bruises out of nowhere... which I have.
Which is also in a large portion of the population and they don't have vEDS.
MobileChicane
21-09-22, 16:08
I've recently been referred to investigate hEDS yes, but for now have been diagnosed with hypermobility spectrum disorder. Unfortunately, this process is slow too, and I'm looking at an 18 month wait to be seen.
What are your main symptoms? Do you have extremely crunchy fingers? And do you live a normal life?
Keep in mind that hypermobility and joint pain doesn't always = Ehlers Danlos. Some people can simply be hypermobile with painful joints as a result of overextending those joints past the point where a normal person would have a "stop". 20% of the population is hypermobile, and doesn't have EDS. EDS is genetic, and I have a strong family history of people who displayed the symptoms and comorbidities of hEDS. It involved a lot more than painful, hypermobile joints.
Well my brother has the same moving of his ring finger as me, but without the constant cracking. I've also had an issue with an overactive bladder (like my dad) for the past 6 or so years, it comes and goes, currently here.
Now, you say it's deadly. Ehlers Danlos is not deadly, unless it's the vascular kind, which is incredibly rare. It comes with symptoms and physical signs that would be very obvious, and you would have had a vascular related event by now. (And even if you have all the obvious signs for this, it almost always ends up being a non lethal variant of EDS because the symptoms have a lot of crossover)
Most people with Ehlers are diagnosed with hEDS, which is not deadly, and for many, will only cause mild symptoms throughout a persons completely normal lifespan. You're jumping to catastrophes here. You haven't listed symptoms that would immediately make me think of EDS or CCI. You sound like you're hypermobile yes, and you may have some pain with that, and perhaps some low grade inflammation. But none of that adds up to the conclusions that you're afraid of.
I think to me the main worry is that if I'm hurting and crunching at this point, at 27, then surely my next 25 or so years are going to be even worse. If my fingers of all things are bad, then what will be inner joints be like now and in the future?
I've also been told that I have some cervical instability after yet another scan, and my physiotherapist gave me neck stabilising exercises to follow, which are helping quite a few symptoms. That's what the majority of CCI or CI cases amount to. It doesn't just progress to the worst case scenarios, and my neck is RIDICULOUSLY hypermobile. I spent a considerable amount of time thinking I must be one of the serious cases. I'm talking about laying the back of my head flat against my back/shoulders, and practically turning it like an owl with no obvious stopping point. I've got bulging discs in my neck too, and a while slew of symptoms that make it seem like my central nervous system is going through a rebellious phase. And still, my instability isn't considered life threatening, even with all of that.
Those articles that you shared are situations that are exceedingly rare, even if the person is genetically predisposed to joint instability. CI and CCI are pretty common in people with EDS or people with HSD, yes, but that instability rarely leads to the catastrophic situations the people in those articles are in. I'm saying this as somebody who had an aunt who died due to craniocervical instability, yet the risk of it progressing for me is still incredibly low, to the point of not even worrying about it.
What makes you not worry about it? For me it's like, if my fingers are like this, and I've got pain all around my body, all I can think is that I have something really bad like everything posted in these articles. What about the memoriam that I posted? There's so many there.
Which is also in a large portion of the population and they don't have vEDS.
But not like me, my chin is severely receded. I didn't hear about random bruises from other people. :(
Beware giving the OP too much information about your own issues, Raptor?
WorryRaptor
21-09-22, 17:21
Beware giving the OP too much information about your own issues, Raptor?
Yep, you're right. I was hoping to alleviate some of the concerns about issues that can come from EDS and hypermobility, but I can see it's not going to help here.
MobileChicane
21-09-22, 17:32
I thank you truly for your effort and I apologise if I come across as being an ass... But my anxiety is getting the better of me. Its hard for me to put this in the background because the crunching and pain is just always there, and all I can think about is how it's only going to progress before I'm midaged. Sorry again.
Why don't you wait until you have actually spoken to a real doctor about your fears? Rather than self-diagnose based on your own "observations"?
MobileChicane
21-09-22, 18:08
Because It's obvious I have it.
WorryRaptor
21-09-22, 18:26
Because It's obvious I have it.
This is where your health anxiety is trying to disguise itself as logic. People can have a huge range of symptoms and seemingly obvious "signs" and turn out not to have the condition they thought they had. Throw anxiety into that mix and it can be extremely hard to trust your own observations. I've been there, believe me, and I know how scary it can be (I was convinced I had terrible things that turned out to be normal, treatable issues). With joint pain to contend with too, it can be a really rough ride, so I know how you feel and I'm sending virtual hugs of support your way :hugs:
The only person who can diagnose you is a doctor. Please don't resign yourself to something that isn't confirmed.
utrocket09
21-09-22, 19:05
Because It's obvious I have it.
But you havent been diagnosed so therefor you dont have it.
My mother in law and grandmother in law have RA and live normal lives.
Many people with autoiummner illness go about their everyday with no issues
MobileChicane
21-09-22, 19:57
But you havent been diagnosed so therefor you dont have it.
My mother in law and grandmother in law have RA and live normal lives.
Many people with autoiummner illness go about their everyday with no issues
I think I'm more worried about EDS at this point.
utrocket09
21-09-22, 20:58
I think I'm more worried about EDS at this point.
Again you havent been diagnosed with anything. Stop getting your information from random places online and maybe go see an actual doctor.
MobileChicane
21-09-22, 22:58
The full results I've been given are as follows:
Thank you for coming to us for your testing needs. It is important to note that blood tests alone are not a substitute for seeing a doctor, particularly if you are feeling unwell. You should not make a diagnosis or start any treatment without a consultation with a doctor or a suitably trained healthcare professional. There are many times when test results which are out of range are entirely insignificant but there are other times when they are not. They always need to be interpreted in the context of the rest of your health and thiscan only really be determined with a full clinical history and examination. Having said that, if viewed without knowing anything about your health otherwise, there is nothing of urgent concern in your blood test results today, although there is one outside the average range.
Your thyroid antibodies show that your antithyroglobulin antibodies are slightly high. Your thyroid hormones are normal currently indicating healthy thyroid function. The raised antibody level can give you an increased risk of developing a thyroid condition in the future therefore you may wish to monitor your full thyroid function annually.
I hope this has been helpful and please let us know if there is anything else we can assist with.
Wishing you the best of health,
Thyroid Function Results Units Ref. Range
Thyroid Stimulating Hormone (TSH) 1.28 uIU/mL 0.35 - 4.94
Free T3 (triiodothyronine) 4 pmol/L 2.4 - 6
Free T4 (thyroxine) 14 pmol/L 9 - 19
Thyroid Peroxidase Antibodies 3 IU/mL 0 - 5.61
Method Used: Abbott Architect
Antithyroglobulin Antibodies 12.95 IU/mL 0 - 4.11 H
Does anyone know what this means? :(
I believe ( almost 100 % certain actually), that it means what these medical professionals said it means: "The raised antibody level can give you an increased risk of developing a thyroid condition in the future therefore you may wish to monitor your full thyroid function annually."
Just relax and and check it annually with your doctor.
MobileChicane
21-09-22, 23:51
I know but I just wondered if anyone had experience with these sorts of tests.
utrocket09
22-09-22, 00:36
I know but I just wondered if anyone had experience with these sorts of tests.
I have raised antibodies. They usually mean you have an autoimmune illness like hashimotos or graves disease. The numbers do not mean anything and are just a marker for disease.
MobileChicane
22-09-22, 05:45
I have raised antibodies. They usually mean you have an autoimmune illness like hashimotos or graves disease. The numbers do not mean anything and are just a marker for disease.
So from my test results, it looks like I have this?
I have Graves disease. From what I know, your antibodies are raised but all your other levels are in range which means it hasn't kicked in yet. How are you feeling? Have you symptoms? With graves your TSH would be extremely low....0.01 or lower. To give you an example, when I was diagnosed, my antibodies were 351. Try lemon balm tea....this stops the antibodies from latching on to the thyroid.
MobileChicane
22-09-22, 08:51
I have Graves disease. From what I know, your antibodies are raised but all your other levels are in range which means it hasn't kicked in yet. How are you feeling? Have you symptoms? With graves your TSH would be extremely low....0.01 or lower. To give you an example, when I was diagnosed, my antibodies were 351. Try lemon balm tea....this stops the antibodies from latching on to the thyroid.
Well outside of the fact that my body clicks all of the time which has me worried (if it's EDS), I am also generally fatigued and feel like I need to sleep a lot of the time.
utrocket09
22-09-22, 11:32
I have Graves disease. From what I know, your antibodies are raised but all your other levels are in range which means it hasn't kicked in yet. How are you feeling? Have you symptoms? With graves your TSH would be extremely low....0.01 or lower. To give you an example, when I was diagnosed, my antibodies were 351. Try lemon balm tea....this stops the antibodies from latching on to the thyroid.
Please do not promote garbage science. Nothing stops antibodies from latching to the thyroid. The antibody numbers mean nothing.
You now have three threads running all about the same issues. I'm not doubting you're experiencing symptoms but here's the thing... You're spiraling and following the typical HA pattern of amplifying physical symptoms and niggles, consulting Dr Google, catastrophizing and reassurance seeking. The questions you're asking are best answered by medical professionals as opposed to strangers on an internet forum.
Contact your doctor and get the answers you seek first hand.
FMP
nomorepanic
22-09-22, 13:29
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.
WorryRaptor
22-09-22, 15:17
Raised antibodies can be indicative of hashimotos, which is autoimmune. That's all I really know about it. Echoing what others have said here, definitely raise these concerns and results with your doctor, because not a single person on this thread can tell you more than a GP could. There's a lot of misinformation that bounces around about thyroid stuff, so any of us could unwittingly be parroting something factually incorrect.
Did you pay privately for those blood tests? If so, your GP will likely want to run their own set of tests first, along with taking note of any relevant symptoms you have.
Please do not promote garbage science. Nothing stops antibodies from latching to the thyroid. The antibody numbers mean nothing.
How is your battle with Graves disease going? If you knew a fraction of anything about it, you will know that you will never be in true remission unless antibodies are below zero.
ankietyjoe
22-09-22, 18:55
I thank you truly for your effort and I apologise if I come across as being an ass... But my anxiety is getting the better of me. Its hard for me to put this in the background because the crunching and pain is just always there, and all I can think about is how it's only going to progress before I'm midaged. Sorry again.
95% of people here have been through periods of time where symptoms are apparently unbearable, and obvious signs of something serious.
You are in a situation where you just need to pull yourself together, or suffer endlessly.
If you're catastrophising, research how to deal with THAT, not a condition you've self diagnosed. Remember, pull yourself together, or suffer endlessly. Endlessly....without end.
utrocket09
22-09-22, 20:01
How is your battle with Graves disease going? If you knew a fraction of anything about it, you will know that you will never be in true remission unless antibodies are below zero.
I have hashimotos. Not graves. I see an endocronologist. Your antibodies can rise and fall daily and the antibody number means nothing.
This could just be an incidental finding and not significant as your thyroid is functioning normally.
The perils of ordering your own blood tests privately.
MobileChicane
22-09-22, 22:10
I have hashimotos. Not graves. I see an endocronologist. Your antibodies can rise and fall daily and the antibody number means nothing.
From what I gather then, the antibodies that have shown in my test show I am a risk to get something autoimmune, but that doesn't necessarily mean cancer?
utrocket09
22-09-22, 23:08
From what I gather then, the antibodies that have shown in my test show I am a risk to get something autoimmune, but that doesn't necessarily mean cancer?
No just means you may have an autoimmune disease like hashimotos or graves.
No just means you may have an autoimmune disease like hashimotos or graves.
OR.... Just a thyroid that's having a temper tantrum. It happens. For the last couple of years, my wife has dealt with thyroid issues. It was discovered after a yearly checkup when it showed up in her bloodwork. She saw an endocrinologist, went on medication and now two years later all is well. Stop asking non-trained people for a diagnosis and talk to your doctor. As my doctor said to me when I complained about the 6 prescription meds I have to take (and another 6+ OTC meds and supplements; "Be thankful we live in a time that a little pill can improve and prolong your life" ).
FMP
utrocket09
23-09-22, 02:06
OR.... Just a thyroid that's having a temper tantrum. It happens. For the last couple of years, my wife has dealt with thyroid issues. It was discovered after a yearly checkup when it showed up in her bloodwork. She saw an endocrinologist, went on medication and now two years later all is well. Stop asking non-trained people for a diagnosis and talk to your doctor. As my doctor said to me when I complained about the 6 prescription meds I have to take (and another 6+ OTC meds and supplements; "Be thankful we live in a time that a little pill can improve and prolong your life" ).
FMP
I think you are responding to the wrong person.
I have thyroid issues with hashimotos. No worries on my end
Hello Chicane, I'm actually envious of your autoimmune result as it's nice and clear cut. I'm the poor soul with all the damage of active Thyroid Eye Disease / symptoms of hyperthyroidism, and none of the autoimmune markers nor the really low thyroid numbers. I have to go see an ultra specialist who has a wait time of 6 months to figure out what's next, so my only advice for you is going to be: Find an endocrinologist ASAP because evidently thyroids are tricky things. Also, and this a weird one:
Remind yourself that a major symptom of at least one type of Thyroid dysfunction (hyper) is... rampant anxiety and nervousness! Seriously.
So take a deep breath and be gentle with yourself, aware that perhaps, right now, you're not even your own best judge of what's going on.
Take good care and good luck!
MobileChicane
23-09-22, 16:50
Hello Chicane, I'm actually envious of your autoimmune result as it's nice and clear cut. I'm the poor soul with all the damage of active Thyroid Eye Disease / symptoms of hyperthyroidism, and none of the autoimmune markers nor the really low thyroid numbers. I have to go see an ultra specialist who has a wait time of 6 months to figure out what's next, so my only advice for you is going to be: Find an endocrinologist ASAP because evidently thyroids are tricky things. Also, and this a weird one:
Remind yourself that a major symptom of at least one type of Thyroid dysfunction (hyper) is... rampant anxiety and nervousness! Seriously.
So take a deep breath and be gentle with yourself, aware that perhaps, right now, you're not even your own best judge of what's going on.
Take good care and good luck!
The issue is that my GP who I spoke to yesterday didn't seem worried about the results. I'm in for more blood work on Tuesday and a review on Friday, but it looks like they're not going to do anything with it atm.
Are you on any meds for your thyroid issues despite no markers? What eye issue do you have?
WorryRaptor
23-09-22, 17:37
The issue is that my GP who I spoke to yesterday didn't seem worried about the results. I'm in for more blood work on Tuesday and a review on Friday, but it looks like they're not going to do anything with it atm.
Are you on any meds for your thyroid issues despite no markers? What eye issue do you have?
You can always ask your GP to refer you to an endocrinologist, or at least ask them to explain why they aren't concerned with looking into it further. Because your other levels are normal, your GP likely isn't worried about any kind of active disease that needs addressing, which makes sense. That being said, if you feel like you're experiencing symptoms of an autoimmune issue like hashimotos, you should discuss it further.
The issue is that my GP who I spoke to yesterday didn't seem worried about the results. I'm in for more blood work on Tuesday and a review on Friday, but it looks like they're not going to do anything with it atm.
Are you on any meds for your thyroid issues despite no markers? What eye issue do you have?
I'm not on meds yet, no, as I haven't even been able to see an endocrinologist yet. I have all of the classic signs of hyperthyroidism: shakiness, anxiety, trouble focusing/paying attention, slightly weak muscles, change in bathroom habits, sweating more than usual, less heat tolerant than I used to be, waking up multiple times a night, thin skin, hair shedding, thin and brittle nails, fast heartbeat. Literally I think I check almost every single box, it's uncanny. But what seals the deal is that I also have had recurring bouts of really intense muscular pain above / behind one or both eyes; restricted eye movement; blurry vision and double vision in certain gazes (up and left is worst for me) and deteriorating depth perception. I also have evidence of slight optic nerve impingement and increased intraocular pressure that is NOT glaucoma in one eye. Most of my extraocular muscles are swollen, sparing the tendons, in pretty much the classic Thyroid Eye Disease pattern. Therefore, I have been diagnosed with thyroid eye disease and referred out to a highly specialized doc to figure out what's going on, as I am negative for all thyroid antibodies AND my TSH and T3 and T4 are all normal.
You can always ask your GP to refer you to an endocrinologist, or at least ask them to explain why they aren't concerned with looking into it further. Because your other levels are normal, your GP likely isn't worried about any kind of active disease that needs addressing, which makes sense. That being said, if you feel like you're experiencing symptoms of an autoimmune issue like hashimotos, you should discuss it further.
Right, WorryRaptor is saying the same thing I am, just from a different angle. I HAVE all the autoimmune symptoms of active disease but my bloods are normal. You're the opposite. That puts both of us in a non-urgent gray zone: my eye muscle damage and symptoms could just be residual effects of a past thyroid fluctuation that has since resolved; or, they could be a precursor to my values going badly haywire. But right now, everything seems to be in order for both of us, just from opposite sides of the same view. So it's not surprising that nobody is really concerned.:shrug:
MobileChicane
23-09-22, 19:14
Right, WorryRaptor is saying the same thing I am, just from a different angle. I HAVE all the autoimmune symptoms of active disease but my bloods are normal. You're the opposite. That puts both of us in a non-urgent gray zone: my eye muscle damage and symptoms could just be residual effects of a past thyroid fluctuation that has since resolved; or, they could be a precursor to my values going badly haywire. But right now, everything seems to be in order for both of us, just from opposite sides of the same view. So it's not surprising that nobody is really concerned.:shrug:
Saying that, I've had pain behind my eye on and off for ages. After loads of eye tests with digital imaging and 2 MRIs they didn't think there was an issue. I did however get told my eye muscles were a bit weak which made me struggle with focusing sometimes.
Saying that, I've had pain behind my eye on and off for ages. After loads of eye tests with digital imaging and 2 MRIs they didn't think there was an issue. I did however get told my eye muscles were a bit weak which made me struggle with focusing sometimes.
Right, then that already puts you in a very different boat from me.
Anything endocrine is complicated, because it's all essentially hormones, and... well... that stuff can really mess with your perceptions of life and your body.
Really suggest getting on a waitlist for an endo soon to figure it out.
Also, as an aside: 1) is that your pup in the photo? Is it a shiba? They are so cute :)
Best of luck
WorryRaptor
23-09-22, 19:33
Right, WorryRaptor is saying the same thing I am, just from a different angle.
Ooops! I completely missed your post while I was tapping away on my keyboard. You said it way more succinctly than I did! :D
I have all of the classic signs of hyperthyroidism: shakiness, anxiety, trouble focusing/paying attention, slightly weak muscles, change in bathroom habits, sweating more than usual, less heat tolerant than I used to be, waking up multiple times a night, thin skin, hair shedding, thin and brittle nails, fast heartbeat.
Yikes I have all of this too. Only ever had my TSH tested.:huh:
This is the downside of symptom sharing on here though....Ammunition for anyone with HA. Too much information...The seeds of doubt sown etc.
OP, you do not have thyroid disease. Under normal circumstances ie with an NHS thyroid profile you would only go on to have an antibody screen if your routine profile was abnormal and indicating thyroid disease. I've had thyroid surgery so am not just fobbing you off. I can see why your GP is not concerned but you now won't be happy to accept this approach I'm sure..
WorryRaptor
23-09-22, 19:58
This is the downside of symptom sharing on here though....Ammunition for anyone with HA. Too much information...The seeds of doubt sown etc.
I'm not overly concerned tbh, it was just a bit of wow moment and I impulsively responded. Autoimmune issues are pretty rampant in my family, so I wouldn't be shocked. Not going to rush off to the doctor or anything :)
Hmm, for once you and I might disagree slightly, pulisa. As I see it, it's incredibly normalizing to see huge numbers of people on NMP all experiencing similar things, and see that they are all 100% fine. That said of course it runs the risk of people sprouting new "signs" via having the idea put into their head. But I think the majority of HA sufferers do that to themselves, anyway (usually via Google.) It's like identifying with your horoscope, eh?
My point to OP is more that one can have actual test abnormalities and no disease -- or test "normal" and still have a lot of actual things wrong -- and that both sides of that are ok, and not a crisis. It's just one's thyroid being a complete bum, which is quite common.
I suppose it depends on how each of us is able to process each other's issues and I just felt that MC was very suggestible to any new "angles" to his feared illness. But obviously that's just my take on things.
I know that these thyroid blood profiles can vary from lab to lab in terms of their acceptable ranges but it seems that MC's GP isn't concerned about slightly raised antibodies so doubt whether he or she would refer to an NHS endocrinologist but it's worth an ask, MC?
I think you are responding to the wrong person.
I have thyroid issues with hashimotos. No worries on my end
No, I'm responding to you and the OP in the sense as some other members posted. Yes, you have Hashimotos and many people have thyroid disorders. They're managed quite well with medication. That said, the HA mind will make a treatable issue as a death sentence and as the OP is spiraling, it's best to not plant those seeds of fear.
Seriously, we see how that works with Dr. Google and such here on a daily basis. A search for Hashimotos, then reading the stats and locking onto the worse case scenarios :scared15:
FMP
ArthriticKeith
07-02-23, 15:54
I wouldn't worry about life expectancy with any form of arthritis. I was diagnosed with RA back in 1986, and since then it has morphed into various other forums. I've just been through a hell of a January, and eventually worked out that theflurbiprofen I had been on for 4 years had stopped working. I've now switched to Naproxen. Before flurbiprofen, I was on Diclofenac for about 5 years. I no longer take painkillers, as I manage it with NSAIDs, hot daily baths, and light exercise. Unlike the early days when I used to eat painkillers like sweets! You're more likely to die of other things, than something arthritis related. :yesyes:
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