My HA journey. Still stuck in the spiral of doom :(

[Wayno]

Hi all,

My first post here, but over the last 12 months I have found comfort and reassurance in this website and the people. It has made me feel that I am not alone in my suffering. Below is my story, and any words of wisdom would be fantastic...

In April last year I found out that my place of employment was shutting down. I am (was!) a scientist/engineer for British Petroleum company over here in Australia, and I had approx 30 people report to me. Yesterday (15 months later) was my last day at work, and the rollercoaster ride has been absolute hell, which appears to have manifested itself as HA.

Not long after the announcement I started having weird sensations - tingling arms, warm LHS of my face etc which prompted me to see a Dr... the story from there:

Apr
- Possible stroke/MS.
- Blood tests came back all normal, except FERRITIN that was HIGH (395ng/ml), normal is 50-220. ALT also slightly high

May
- Suspected fatty liver - U/S came back clear.
- Suspected infection - retest after a month

June/July:
- Ferritin still high (390ng/ml).
- Suspected Haemochormatosis - Gene test = negative

Now, once most normal things for high ferritin are ruled out, other things that are normally lower on the list start to surface - such as high ferritin being a symptom of active malignancy..... :scared15:

August
- Ferritin now 359. I stopped eating iron fortified foods and cut back red meat.
- Bad cold, followed by sinus infection
- Felt tingling in Left arm, dull pain in jaw.
- ER for suspected heart attack. All clear EXCEPT the comment from the ER doctor that my chest x-ray was a bit "cloudy", but that was probably due to my recent infection

Now, I am sure a lot of your can relate. High Ferritin could mean cancer. Lots of coughing. Cloudy chest x-ray. I then became absolutely fixated to coughing and checking for blood - and then I saw some. Freaked out completely, but Dr put me on more antibiotics.

October
- Still occasionally "coughing" up blood, but I suspect that it is actually originating from my sinuses. Dr still isn't concerned, but I am absolutely paranoid. I was coughing/spitting a dozen times a day and searching for even the slightest hint of blood.
- Started therapy for HA, but never really got into it because I always felt that my symptoms were real, genuine, and that my anxiety was somewhat justified

November
- Another chest x-ray. All clear.
- Still forcing myself to cough/spit, and DAILY seeing small traces of blood
- Referred to ENT who declared that my sinuses and throat (where I thought the blood was originating from) was all clear
-Ferritin lower (280) but still high

December
- Ferritin now 320g/ml. Continuing to drop, slowly...
- Still spitting blood daily - mostly when sucking from sinuses
- Noticed some lumps in my mouth :scared15:
- Yet another chest x-ray, all clear

January
- Gave blood (to reduce ferritin)
- Went to dentist who declared my mouth healthy
- Went to ENT again, who declared my mouth, throat and sinuses as healthy

February
- Found lymph nodes on my neck were swollen. I had a suspicion that they had been like that for YEARS (like 20 years) but I still freaked out. Dr said they do not feel suspicious
- Also discovered a cyst near my tonsil. Completely flipped out.
- Went to ENT again, he was getting a bit peed off by now. Again, all clear, along with lymph nodes
- Started seeing a new therapist and previous one went on maternity leave

March
- Ferritin now down to 205. Healthy range. All blood tests healthy. YAY!!!
- Suffered though, but did get another x-ray after coughing up some black specs. Later found out that these came from the M&m's that I had eaten the night before!!!!
- Bleeding has stopped. But I still check a number of times EACH DAY. It is driving me crazy

April
- Went to a new ENT. She was fantastic, took a long time to look at everything, explained everything and I could see the scope live on the screen. Felt very reassured. Last thing she said was "come back if you get pain in your ears"...
- THE NEXT NIGHT - Pain in my ears. The fact that it was in both ears was somewhat reassuring as I believe cancer would only generally affect one ear....
- Went back to GP and requested a head/sinus and neck MRI. I had that done that evening (the Australian health service is TOO GOOD sometimes!). ALL CLEAR
- Found that when my ears were sore, my jaw as tense. All anxiety related. My wife also commented that I sometimes grind my teeth in bed.

May
- Found lymph nodes near my thyroid. Went straight to dr, and then straight to U/S (all within an hour). All clear

June
- Blood returned when sucking/spitting from sinuses, mostly due to the colder months and dry air. Went back to ENT on Monday this week and she was happy that everything looked fine
- COUGHED BLOOD on Tuesday night. First time in ages I have coughed up genuine blood. Went to ER and they did a CT scan of my chest, after I had a mini anxiety attack regarding the radiation :(.
- CT scan all clear, but I have now spent the last 24hr researching and convincing myself that the radiation will come back to bite me. Also completely freaked out that they overdosed me (no justification for this, just paranoia).

Overall, its been hell for the last 12 months. There's stuff that has popped up that I have not added above because I think you all just get the drift.

I have seen 2 different psychologists, but with limited success.
I have seen 7 different GP's (one main one who has been incredibly supportive)
I have seen 6 specialists - an internist, 2 x ENT, Oral surgeon, 2 x dentists
Been to the ER 5 times :(
Had the following tests:
- 7 full LFT
- 4 x chest x-rays
- MRI of head/throat
- Liver ultrasound
- Thyroid ultrasound
- Chest CT for Pulmonary Embolism/Lung Cancer

ALL TESTS (even blood tests) ARE NOW CLEAR

Yesterday was the first day since August last year that I did not cough/suck/spit up any phlegm and check for blood. A massive milestone for me.

I just want this all to be over (like everyone on here!) and get on with life. Every time I get a clear test, I can almost feel my anxiety searching for the next thing to worry about. Right now I should be rejoicing that the main fear I have had for 12 months (lung cancer) has been proven to not exist and that my lungs are healthy, but instead I am fixated on the radiation dose that I received...

I start a new job on Monday, and have my kids with me for the next two days as I enjoy some much needed R&R (it's school holidays). My wife has been incredibly supportive throughout all of this, but I can tell that she has just about come to the end of her teether too.

I am not sure what I hope to achieve by this post, except to get all of this off my chest (pardon the pun!) and maybe get some other opinions or tips on how to draw a line under all of this, and leave it all behind with my old life, in my old job...

Thanks for reading!

[worrywart29]

The first step in all this is recognizing that it's anxiety, which you clearly do. I think you're well on your way to recovery. Once I started recognizing which of my symptoms were caused by anxiety I noticed I felt a lot better. Still not 100 % but I'm getting there. Good luck!

[skippy66]

Wayno,

1. You are not alone
2. You can and WILL get better. I did, and I was in a very similar place to you.

[vpfrends]

Hi,
I just wanted to comment and say that you are not alone, not by a long shot. Reading your story I feel that mine pales in comparison but I still know exactly how awful and miserable health anxiety is (been dealing with it about eight months). It's a really brave and hopefully therapeutic thing to vent so I just wanted to thank you, because reading someone else's story helps me feel less alone, and helps give me hope. Probably the worst thing for me about HA is feeling so incredibly isolated by it, because you focus so much of your energy on your own body that you become separated from the world, and I tend to feel unreal because of it. To read someone else's experience and actually feel connected to someone else's worry is a real relief, because of course to my mind the only proper thing to focus on is negativity and doom.

I really hope you can take the positivity of your situation and beat the anxiety. I really hope I can do the same, eventually, and just reading this has helped me at a moment when I was feeling so depressed because of HA. As soon as my mind latches on to the next symptom or illness (usually cancer), that's it, my life is over. But it's not, and this has helped me remember that. I'm still terrified that for once my paranoia might prove to be genuine, but from what you have said you've reminded me that there is hope, there are other people in the world besides myself, and this is proof that HA is a poisonous disease but more often than not there is nothing more sinister behind it. Sorry for rambling - I hope you can start to feel better knowing your fears were proven false, and I and many other people are here for you :)

[eastofeden]

I've been worried about pretty much everything you listed from heart attack to coughing up blood to possible MS to iron overdose, and also been tested for everything you have, too. My biggest fear was a blood clot and coughing up blood. In the space of a year I had 12 chest x rays, dozens of blood tests, a chest CT scan, so many ECG's I've lost count, a contrast venography, DVT ultrasound on leg, 1 heart echo, treadmill test, a gastroscopy, and countless other unnecessary procedures. The verdict? All normal.

There was a point where I would visit the emergency room at least once a week, over a year I went 42 times. 42 times. The doctor absolutely screamed at me and it was the final wake up call I needed. I couldn't keep wasting their time and money anymore. It was getting ridiculous, and I was having a breakdown. It was the most stressful year of my entire life, and as tied in with a major upheaval at home. In fact, the doctor was more concerned about the unnecessary radiation that all my radiology tests had given me! I had also lost my job so I had way too much spare time on my hands to think and panic. As soon as I started working again I realized I didn't have any time to worry anymore! It cost me my boyfriend who couldn't deal with my neurosis and constant panicking, it's only my best friend and my mother who stuck by my side and got me the help I needed to start living a normal healthy life again.

All I can tell you is that your tests are completely indicative that you are healthy and it really was all in your head. I hope this new chapter keeps your mind off things and reminds you that you are absolutely healthy.