My story

[Tallguy]

Posted this in introductions earlier but advised to post it here:

I will attempt to tell my story but I might not remember it all due to my memory not being as good as it was before I became unwell and I find it hard to see properly and concentrate.

It was July 2011. I am Sat watching the David Hate vs klitscho fight which I had been looking forward to for ages. It was also my day off work and I had a takeaway in my lap. I was basically as happy as I could be at the time.

As I was watching the fight I started having chest pains and a thumping heartbeat that kept skipping every third beat. This worried me and made me anxious and led to my first ever panic attack and me spending the night in a hospital bed.

They ran a load of tests and it showed I had raised white blood cells and very low folic acid. I was given folic acid tabs but had to stop taking them as they made me feel really sick.

Over the next few weeks the fear disappeared but the symptoms got far worse. I haven't had a break since the day it first started. The symptoms are there immediately when I wake up until I go to sleep.

I spent the next 2 months bedridden and off work sick. My work were not happy and have been trying to get rid of me ever since even though I have perfect attendance since then.

Finally I just became used to feeling like death each day and continued on with life even though its a massive struggle with severe fatigue and weird vision being the biggest problems.

Before I even researched the symptoms online I noted them all down on paper. When it came to reading anxiety forums it seemed I had nearly all the symptoms at the same time rather than people having 4/5 and then changing. Also where I read that peoples symptoms come and go mine are 24/7.

I will attempt to put all my symptoms below:

*weird vision
*derealization
*pounding heart
*dizziness
*head pressure
*migraines
*aching right wrist
*pins and needles up both legs
*balance issues
*severe fatigue
*need to sleep all the time and can sleep forever
*can't concentrate anymore. No tv or reading.
*went from a sharp brain to a sluggish one
*forgetful
*chest pain
*chest pressure
*head pressure
*weakness even though I am a big strong guy
*went from hating heat to hating the cold
*right ear burns up and goes bright red
*feels hard to breathe
*had 2 panic attacks but they disappeared as no fear now
*depression developed
*ear pressure
*thigh pain
*constipation

There is also one more which developed 8 months ago and that is tinnitus in my right ear. This is by far the worst thing to deal with out of all of them.

I have seen countless docs all of whom were very unsympathetic. I have had all the tests and all came back normal except for:

*low folic acid
*raised white blood cells (now normal)
*very low vitamin d which I put down to me hating the sun for years

I wore a holter monitor for 24 hours and they found "a significant amount of ectopics". I was told to live with it.

Before all this happened to me I hadn't seen a doc for 9 years as I am the type of guy to go to work with really bad flu or when I'm in severe pain. Doctor dismissed that and thought I was just a worrier. At one point in his office he said "do you think any part of you is ok" at which point I walked out and have not been back since.
 
Before the doc said that I went cold turkey on alcohol, cigarettes and caffeine and haven't touched them for nearly 2 years. As if I would have the strength to do all of that at once if I was just trying to find things to worry about. I hate being in doctors surgeries and would avoid them like the plague if I could.

Anyway its now nearly 2 years on and it has got worse due to the tinnitus and the fatigue is worse than ever. The depression (due to my ex girlfriend which is another story I shall tell at some point) doesn't help either.

The only two treatments I got offered were sertraline and cbt over the phone. The sertraline caused a bery bad reaction which ended up with me seeing the mental health team at the hospital. I was crying then seconds later laughing and running all over the place. That was NOT a panic attack and they gave me valium and told me to stop taking the sertraline.

I went back to my doc and told him what had happened and he was annoyed at me and said I gave up too easily. I was enraged by this as everypne who saw me including the hospital docs knew I had to stop taking them. The bad reaction happened on day 8 of taking them. My doc argued they couldn't have effected me in that time which I said was rubbish as they had effected me sexually after 3 days.

The phone cbt was useless. The guy on the other end just kept insisting there must be a daily trigger which sets the symptoms off. I kept telling him I immediately wake up like it but he wouldn't listen. He also told me to stop sleeping during the day as I work split shifts and he thought i was doing I to hide from the anxiety. I actually was sleeping as I was exhausted and fell asleep at work a couple of times and I wanted to avoid it happening again as my company wanted an excuse to get rid of me as it was but he wouldn't listen.

The final straw came when he kept yawning when I was explaining my symptoms so I never rang back again. Once again my doc was unhappy.

Jump to present day and I have been struggling without any help for about a year. I actually long for ned time as in my dreams is the only time I feel good. I long for a cure for what's wrong with me as life is now awful Tbh especially with the tinnitus.

The fatigue is getting worse and soon I will have to quit my job. All my friends abandoned me also as I am not the party animal I was before this all happened. They offered no support as well and stigma kicked in. The love of my life didn't exactly make things easier either.

Lastly I thought I would add that 5 members of my family went through similar to this and were laughed at by doctors and told to pull themselves together until they all tested positive for thyroid after the test being negative for the first 1-2 years. I am kinda hoping mine will test positive as well as then I can be cured.

My sister was particularly bad and had panic attacks all day for 2 years and it ended up being down to the thyroid and since treatment she now lives a normal life. I have spoken to the others who had it and they had similar symptoms but not as bad as me.

If I ever tell this to the docs their egos kick in and they immediately change the subject as they dont like suggestions.

Anyway that is my story and I am sorry for any mistakes as it is hard to concentrate and I typed it all out on a mobile phone.

So hello everyone and I hope you all get better soon.

Any advice would be appreciated.

Oh and I forgot to mention.. I am a 6ft 6, 18 stone security guard with anxiety. Who has ever heard of that lol.

[kconnors]

Hi,

Hope this is okay if I just focus on the thyroid because I had undiagnosed thyroid for many years . . . my tests all came back normal until I started cycling between over-, normal, and under and then back again . . . the episodes drove me to the ER with many of your symptoms. When underactive, I was like a slug and when overactive, I ended up in ER because of the symptoms. Long story short, finally diagnosed and received treatment which made a whole lot of difference.

Couple of things you need to be aware of . . . First, thyroid issues can run in families . . . . an elderly relative told me that several members of her generation had the same symptoms (of course, back then, not called thyroid issues). In fact, if there are other members of your family with thyroid issues, then you need to insist on more in depth testing. So, find out and write down who in your family has thyroid issues.

Second, family doctors are not always the best with thyroid tests. I was fortunate. I had a new doctor who told me that the blood tests were normal (I had them when I was in a normal phase), but he insisted on asking me how I felt (wow! what a great doc). He felt that the blood work was not revealing what was "wrong" and he referred me to an endocrinologist who specialized in thyroid issues. She insisted that I have an open requisition which meant that as soon as I felt that I was going into an under- or overactive episode, I was to get bloodwork. The trick worked as she had ordered full antibodies testing and was able to see that I had both types of antibodies (for Graves and Hashimoto) and that the cycles were becoming more compressed and intense. Finally, there was a firm diagnosis and treatment even though it took over a year. In fact, the doc suspected that I always had thyroid problems but that the episodes were so far apart and the blood work normal that it went undiagnosed. I know that you are fatigued, but insist a consultation with a specialist in thyroid or perhaps there is a teaching university nearby that may have a program.

Third, because thyroid is more prevalent in females than males, some docs do not pursue a diagnosis of thyroid. I hate to think that there is this short sightedness, but there is. I have two male friends both of whom deal with thyroid issues very effectively through medication.

Fourth, you have to be your own advocate. Find a doctor who listens. I hope that endocrinologists who specialize in thyroid disease are not the ones blowing you off. I don't know where you live (UK?), but see if you can contact a local thyroid association for a list of doctors specializing in thyroid. Did your sister see a specialist? Or was it evident from her bloodwork that she had a thyroid issue? In any case, as fatigue and frustrated as you might be, insist on a specialist who will run as much thyroid blood work as possible.

Fifth, know that you are not alone . . . thyroid is an awful disease as it affects metabolism which affects brain chemistry and every other function in our bodies but it is very manageable through medications . . . .

Please keep in touch and let us know how you are doing . . . and, by the way, thyroid does not care if you are 6'6" or a petite 5' 4" . . . . you are showing so much strength in this fight because your medical support system appears to be failing you in a very huge way . . . including anxiety . . . .please, please keep up the good fight . . . take care, KC

[Jlo1019]

Oh my,  you are dealing with a lot. I'm sorry you are suffering. Anxiety is a such a nasty condition.

 I would insist on the thyroid test too. Its your body\life,  you need to find out if all is well. At least you will know for sure.

And for comfort,  when my anxiety is at its worst,  it is debilitating. Its robs you of any normalcy. I hope you can find some peace from the board,  more medical tests and maybe better mess and different doctors.

Stay strong. Anxiety is only as strong as we allow it go be.

Fyi,  I'm a 6ft girl,  so it hits us all! ;)

[Tallguy]

Thank you so much to both of you for your replies. Makes a huge change being understood than being discarded and avoided.

I will find myself a private doctor I think. If its the only way to save my job it will be worth it and I won't have to wait 2-3 months for tests like on the NHS.

I heard of a doctor called Dr Skinner who has a practice in birmingham. He seems to be highly recommended by thyroid sufferers as he treats you on the symptoms and not the standard blood tests which the normal docs swear by for some reason.

Problem is he was taken to court by the medical council who wanted him banned but he was allowed to continue practicing due to a huge outcry from people he treated when noone else would.

A ruling was made that you have to be referred to him to see him but every GP I ask refuses point blank even though I will pay all the expenses. It is like they treat him just like the first guy who said the world was round.

If anyone knows a doc who would refer me I would be most greatful!

It's nice to actually be listened to for a change and taken seriously. The worst part of anxiety is that people who you spent your whole life helping will look down upon you and walk away as you are of no use to them anymore.

People cannot tell that I'm ill until I tell them. I had loads of friends and people used to shout out to me in the street. I was well known and liked. I also had the most amazing girlfriend who was the love of my life. I had supported her with her own problems that she needed counselling for long before i got ill and it was tough but I wouldn't abandon someone for things they can't help.

I trusted these people so I decided to tell them. Let's just say I went from Mr popular to the person people cross the road to avoid in an instant. My best life long friends stopped calling or answering their phones. One even made fun of what I was going through behind my back.

My girlfriend was the last friend I had and I treated her like an absolute princess and showered her with love and gifts to show her how much I appreciated her support. Turns out she cheated on me a few times within weeks of getting anxiety but still strung me along for months accepting all the gifts and weekends away every month. I finally found out and she has blamed it all on me and even said its because I got unwell. The same girl I supported for years with her problems.

So yeah I have that to deal with which doesn't help with the depression. I know its best to have such a nasty piece of work out of my life but I still love and miss her after all shes done to me.

Anyway now I must focus on getting myself better rather than putting others first like I have my entire life. Hopefully I will make progress when I see a new doctor. Learning to be able to trust others after how i have been treated is a different story. In my mind you should value people no matter what they suffer from but as I found out most dont think like that.

Thanks once again for your replies and I will find a new doctor on monday and keep you all updated with any progress. I apologise for the long posts but I just need to let it out after all this time.

To any new sufferers reading... It's not all doom and gloom. You must remember I havent had much help and am not on medication. Go get yourself checked out and an MRI scan of your head to put your mind at ease. It helps immensely. Over time you will get used to it and the fear of the symptoms will subside and become more of an annoyance. Just take each day as it comes.

Little things that I found helpful were drinking just mineral water and quitting fizzy drinks. If you mudt drink a fizzy drink then try fanta zero. It's caffiene free and wont make you put on loads of weight.

Also find something to distract yourself. As I could no longer watch tv, party or even concentrate on playing games anymore I decided to start my own eBay business. It has got me through the past year and improved my wealth which has eased any financial worry I had.

I am sure I was ending this post a few paragraphs ago hah. Well stay strong people and thanks for the replies once again.

[kconnors]

I know that this may seem like an odd way to view things, but perhaps what has happened is a bit of a "blessing in disguise" . . . you know who your real friends are and even if there are none remaining from the old group, then fine. You are strong in spirit and will recover and will seek out and develop "true" friendships. As for your former girlfriend, well, I have this sneaky suspicion that "what goes around, comes around". Yes, you probably do still love the illusion of who you thought she was and your relationship, so keep the good stuff from that . . . your generosity of spirit, your sharing of time and emotion, and your investment . . . then, when you are feeling better, use those good things to go out and find someone else . . .yes, you will probably be cautious but that is okay because caution is allowing us time to make sure that the relationship is reciprocal, but you will find someone to value you as you value them.

Right now, you are doing everything that you can, especially your eBay business that serves not only to refocus your attention to reality but provides you with the financial resources to find a private doctor. In Canada, we had a similar situation in British Columbia with a doctor who went counter to prevailing interpretation of blood work . . . . he met with great adversity . . . . do not become discouraged if you need to try several doctors . . . I did a quick web search and I have no connection or knowledge of these folks, but you may want to look at the following links:  http://www.birminghamthyroidclinic.co.uk/       or     http://www.bmihealthcare.co.uk/hospital/newshome?in_page=News%20and%20Events&p_hosp_id=332&p_region_id=1&p_news_id=2582   . . . as always, I would highly recommend doing your homework and finding out as much as possible before seeing any specialist . . . there is also a site at  http://www.thyroid-info.com/topdrs/unitedkingdom.htm   which has comments on doctors specializing in thyroid in the Birmingham, UK area . . . again, do your due diligence and check things out . . .

More than anything . . . please come back as often as you like and post as much or as little as you like for whatever reason . . . we will support you as best we can and look forward to hearing great stuff from your journey . . .take care, kc