A very slow death

In my early forties I was struck down by a disease I knew nothing about. For ten years I suffered from untreated Hypothyroidism. It ruined my career as a writer and came close to killing me. This is my story…

With the power of hindsight it’s hard to believe that nobody noticed. I certainly didn’t: although the evidence was staring at me in the face every time I looked in a mirror. My wife didn’t seem to notice: although really she did but it’s just that I wasn’t prepared or able to listen to any of the hints that she tried to drop in an admittedly uncharacteristically subtle manner. My friends didn’t notice: but they were probably amused that a weight fascist such as I had piled on so many pounds. The truth of the matter was that I was falling to pieces. My body had gone into shutdown. My brain was lost in a deep, deep fog. I wasn’t able to notice anything. I was slowly – very slowly – dying. Life was percolating out of me in a way that nobody could really notice.

It’s sounds melodramatic now to claim that I was dying. Because there was no blood – well, very little. There was no cancer ravaging my body. Most of the time I could just about function and affect some semblance of normality. I could go to work five days a week. I could do my job in a kind of fashion. I may have felt a permanent soul sapping exhaustion that has to be experienced to be believed but then I was in my mid-forties – aren’t you supposed to start slowing down by then?

And yet I certainly didn’t feel that I was slowing down as the millennium came and went and I entered my fourth decade. Far from it. In fact, my career as a writer – if you can call it that – was enjoying a purple patch that some would say was the same colour as my prose. I’d had a bestseller in America that was later made into a TV movie, my first adult book was getting favourable reviews and I was already talking to my publisher about a follow-up. On top of this my first child was about to make an appearance. Life was good.

But life was about to turn bad. In reality this transformation had already begun a decade earlier when I awoke one morning at the foot of the stairs with a chipped tooth and my chin glued to the carpet with congealed blood. At the time I put it down to the hazards of drinking alone but now that I’m an expert I know that a rogue gene I was carrying had suddenly decided to kick in. The gene in question’s sole function is to trick the body’s immune system into thinking that the thyroid gland is a foreign invader. This condition is known as Hashimoto’s Disease (people often snigger when I tell them the name) and probably affects one in 1500 men. It sounds quite exotic doesn’t it? But it’s not really. It’s actually just the hors d’oeuvre, the starter for a main course that is far more serious.

The thyroid is a butterfly shaped gland in the throat that has a slightly undeserved anonymity. It’s not as sexy as the heart, or the liver or the lungs but it’s purpose is just as important. It produces an essential hormone snappily entitled T4 which the body converts to another hormone known as T3. Both are responsible for regulating the function of every organ in our body. They are like petrol and oil: if insufficient hormone is produced things start to rust and drop off. The paint begins to flake, the engine starts to splutter and die.

When Hashimoto’s Disease begins the body doesn’t really know what to do with itself. The simple mechanics of what is happening are actually very easy to understand. Thinking it to be a foreign interloper our natural anti-bodies attack the thyroid gland. Healthy thyroid tissue is slowly replaced by scar tissue and not able to produce the required amount of T4 necessary to power our metabolism.

The body attempts to fight back by producing more T4 but often overcompensates. The result is that the sufferer temporarily becomes hyperthyroid – in other words there is too much T4 swimming around our veins. Think Marty Feldman. Think poppy out eyes. At least before I began avidly reading up on the subject this was the most that I knew about the thyroid gland. Hyperthyroid sufferers have too much petrol: they have an excess of energy, they find it hard to sleep, they do things at a slightly faster pace than most ordinary people. They also tend to faint quite a lot more often than ordinary people.

During a two-year period beginning in 2002 I began to faint a lot. The fainting usually occurred in the early hours of the morning after I had awakened desperate to answer the call of nature. Then the weirdest thing would happen: I would be overcome with a strange feeling of dizziness and nausea and the feeling that I was about to collapse. I would awaken minutes or hours later confused and disorientated on the bathroom floor. When a fifteen stone man collapses he becomes a dead weight. And when a dead weight hits a hard tiled floor bad things can happen.

First there were the obligatory minor cuts and bruises: a cut on the forehead, another on the chin. A broken nose that happened when my head hit the side of a table. Bruised ribs. And finally third degree burns on my back caused when I collapsed unconscious against a red hot radiator. It’s quite an impressive scar actually. Butterfly shaped ironically. Kind of like a natural tattoo. It gives me a touch of character on the beach. I’m just lucky it’s not my face that ended up being cooked by that radiator.

That particular bad thing resulted in my first visit to hospital, where bits of wire were taped to various parts of my body and I was informed that I had a heart condition; a diagnosis that was later rescinded. None of the specialists there thought to check for a thyroid condition. This was understandable, though. It was busy, it was the middle of the night, and I had no history of thyroid trouble.

And none of the specialists that I saw about my hip problem thought to check for a thyroid condition. In the mid-nineties I had slipped on some wet leaves while out shopping in Soho. It was the most absurdly minor of injuries but it simply refused to heal. As the years went by I saw numerous specialists about this. I had x-rays. I had physio. Nothing seemed capable of ridding me of the permanent limp I had acquired that beautiful autumn morning. Eventually after years and years of pain I had an MRI scan and I was told by another specialist that I had a delightfully named condition known as Avascular Necrosis. Basically, something had caused the blood supply to be cut off from my femur and the bone was dying like a prize pot plant starved of water.

A man in a bow tie and red braces cheerfully asked me if I was ‘free in December’, because if so he could fit me in for a hip replacement operation. It would only cost, he told me, £16,000. Nice work if you can get it.

Another specialist told me that he would like to drill holes in my femur head using a technique known as Core Decompression. When I Googled this technique I discovered that it was notoriously painful and had only a 5% success rate and that nobody seemed to know why it might occasionally work. Not to mention up to 26 weeks on crutches. I politely declined. Well it wasn’t that polite if I’m honest.

Yet another specialist gave me the best advice: ‘Do nothing until you can live with it no longer,’ he said. And that’s what I went for. I know that a hip operation in the future is unavoidable but I can live with intermittent pain and a limp for the time being. As I continually and tediously mention: not one specialist thought to check for a thyroid condition. Had they done so they would have learned that avascular necrosis is one of the many symptoms of a malfunctioning thyroid gland.

Likewise if any of the doctors that I visited had done a little research they would have discovered that the seemingly ever-present colds that made life miserable were linked with my thyroid, that my psoriasis, my debilitating joint and back pains (holding a baby in my arms would condemn me to months of constant pain), my dry hair and scaly skin, frankly disgusting diarrhoea, my agonising bouts of depression and panic attacks, my inability to sleep at night, my terrible weight gain, and my chronic fatigue. All of these problems stemmed directly from that little butterfly gland in my neck. And yet nobody knew it.

A more curious symptom but equally worthy of mention was the sound that my throat made. At first it was funny when my throat literally began to scream. If you’ve ever hear Rob Brydon do his ‘man in a box’ trick you’ll know what I’m talking about. When I lay in bed at night my throat would emit a high-pitched scream that was astonishing to behold. It was like someone or something was trapped in there and crying out to be released. Once the laughter had subsided, irritation set in. It was difficult enough for me to sleep at night without an extra person in bed with us. I would lay awake at in the early hours angrily willing my throat to stop making that noise. I would change position. I would toss and turn. Nothing could stop it.

Yet another symptom of a misfiring thyroid is an important one for a writer: when one is hypothyroid (don’t forget that I didn’t know that I was at the time) it is almost impossible to concentrate on anything for extended periods. This mean that I was hit by what I believed to be the most profound case of writer’s block since Moses finished the Ten Commandments. It was simply impossible for me to write. I became an expert at starting things and never finishing them. I would begin a project full of enthusiasm but within days I found that I was simply no longer interested in doing any more work. I have a hard drive full of unfinished manuscripts. My wife told me that I had lost my ‘mojo’ and she was right. I couldn’t write. I could only go through the motions. And this only increased my depression, my sense of worthlessness, and my inability to write anything. Anything at all.

By 2012 I had been suffered from an under-active thyroid gland for well over a decade and I was a complete mess. My weight had ballooned to almost 16 stones despite constant dieting. I awoke most mornings at four or five am and was consequently exhausted by 9.00am. After taking my daughter to school I would often go back to bed and sleep for three or four hours before going to pick her up and then snoozing some more. When friends came over it became something of a standing joke that I would often fall asleep on the sofa. I limped continually and took pain killers to try to offset the ever-present ache in my hip. Apart from a couple of books on photography (which I simply do not recall working on) I’d had nothing published since 1999 with no chance whatsoever of remedying this situation). I felt constantly sick and drained of all energy and motivation. I really was slowly dying.

People were talking about me behind my back. My mother-in-law, a nutritionist, was advising my wife to get me checked for diabetes. My wife gave me a big speech about ‘approaching fifty’ and the need to go for a medical MOT. I was not adverse to this until I found out what it would cost.

The thing about Hypothyroidism (the opposite of Hyperthyroidism) is that when the body does not produce enough T4 the symptoms can so often be confused with signs of ageing. We do get stouter as we get older. We do need less sleep. We aren’t in the same condition as we were when we were younger. Add this to the fact that I was the father of a young child and who wouldn’t be tired?

And then one day I went for breakfast with some friends. Siobhan, a pretty Irish girl, looked at me and said matter-of-factly ‘Have you had your thyroid checked?’

It had never occurred to me to do this because I knew nothing about the thyroid. Nothing except Marty Feldman and poppy-out eyes. It had never actually occurred to me that I was ill. This is yet another aspect of a thyroid condition: it’s like Chinese water torture. The onset of the symptoms is so slow and pastoral that it’s easy to miss what’s going on. It’s not like a heart attack or a stroke in which the physical manifestations of the illness are instant and in your face. It’s the sort of disease that you might never know that you had until it’s too late and you’ve died of it. It slows the body and it slows the brain until you’re living in a fog and you can’t see anything around you.

I went for a blood test and the doctor rang me within 24 hours and left a voicemail. A voicemail from your GP is seldom good news. I thought it had to be cancer. He called me into his office and showed me a piece of paper. When the thyroid gland is under-active yet another hormone comes into play. It is called TSH (Thyroid Stimulating Hormone) and is produced by the brain. The function of this hormone is to let the thyroid know that it is producing the correct amount of T3. In a normal person the level of TSH in the body runs from approximately 0.5-4.5, although many specialists argue that anything above 3.5 is dangerous. Mine was 99. Other specialists that looked at my test results laughed when they saw this figure, claiming that the test had to be wrong. Except it wasn’t.

I was given little white pills to take every day for the rest of my life. The pills synthetically replaced the T3 hormone that my body was not producing. I undertook blood tests every month in order to ascertain the correct dosage required. And magically, amazingly, within a fortnight things began to change.

Thanks to Google it did not take me long to become an expert in the Thyroid gland. Among the multitude of research available online was one common story: people who suffered from an under-active thyroid gland spoke of a ‘fog lifting’ when they were placed on medication and I could understand exactly what they were talking about. It was as if I could suddenly think freely for the first time in years. The pain in my joints and back slipped away. I began to sleep. I had energy that I had forgotten I ever had. I smiled. There was colour in my cheeks. I lost thirty-five pounds in weight without hardly trying. I still limp, however.

More importantly I can work again. I can write. I’m not saying that I am the best but I’m going to try to be the best I can be. Since January I have written a kids book for my daughter and I am midway through an adult thriller. I have a lot of catching up to do. A decades worth of catching up.

Naturally I have my bad days, my relapses. Sometimes the tiredness returns, followed by the depression and the bad tempers that can cause bitter arguments. But in the main I’m pretty much the person I was before I began collapsing way back in the 1980s and the fog descended.

It’s just like starting over. I have no agent. I have no publisher (and there’s a good chance that no publisher will touch me with a barge pole given the rather long sabbatical that I have taken). I have to begin my career from scratch.

So what’s the point of me writing all this down? Well firstly it’s to prove to myself that I can. Steve Jobs said that great companies ‘ship’. And in order to succeed we all have to ship. This is me shipping. Secondly, maybe there’s someone out there who’s going through what I’ve gone through. And maybe they’ll read this and give their doctor a call and demand a blood test. Because in my experience with doctors and specialists it’s down to you to make the call.

They never call you. You have to call them.

ADDENDUM

Since this page is by far the most popular page in my entire blog (by a considerable margin) I’ve decided to do a blatant bit of self-promotion. If any of you would like to see the results of my being able to write for the first time in years I have a new book out. It’s called Johnny Nothing. It’s for kids and – I think – is very funny indeed. Although I may be deluding myself.

Here’s the link:

https://www.amazon.co.uk/dp/B00ITZTOUA

If anybody out there would like a review copy please send me an email. Thanks

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55 thoughts on “A very slow death

  1. Thank you for highlighting thyroid problems. Its like a middleages with this. Doctors don’t know enough and half of the human population walks about like Zombies. Scary thing is that they just take the necessary blood tests and don’t delve deeper thats why so many people who has thyroid problems are undiagnosed. I had my right thyroid removed 1983 , never been offered any medication ..over the years I had blood tests and all came back ‘normal’ last year I had ‘normal’ bloodtest again even though the remining thyroid was riddled with nodules ( 7 all together and biggest was 3 cm) yes I had the noises and the snoring ..now I don’t have thyroid glands anymore. I had an op on 24/6 and all was thrown in the bin . I am of course on thyroxin now but good riddance. I couldn’t take the strangular feeling anymore. And guess what I don’t snore anymore :o)

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    • Hi Marja,

      Thanks for reading. It sounds like you’ve really suffered over the years. Far worse than me. I hope that you can manage to get back to a normal life.

      I’m trying to.

      Ian xxx

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      • Oh no Ian , I have had a normal life had 3 daughters I just had non-maglignant growth in mine. I am just starting the ‘fun’ bit with the medications with trial and error with the dozes. I haven’t a clue what normal thyroid readings should be. But looking back I do now know that I should have been on some medication. I have always been cold ( really annoying comments of it because I come from Finland and every time I say that there is about 5 people piping up ‘ you should be used to the cold’ ) Tiredness, Can’t keep still, Back problems , I actually had a disk removed last year, digestion problems, I self diagnosed myself having lactose intolerence all of a sudden I couldn’t drink milk anymore etc. Nopes Ian you had it 100 worse, I just plodded on with minor discomforts. Oh I forgot to tell ..since I had them removed I have stopped snoring too !!!!!!!!!!!!!!!!

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  2. Hi Marja,

    Thanks for commenting. You have my deepest sympathies. It sounds like a nightmare for you.

    Thanks also for reminding me about the snoring. I, too, used to snore terribly. That’s gone now that I’m on medication.

    Keep healthy.

    Ian x

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  3. Thank you for this. I have had hypothyroidism my whole life. It is so good to know that I am not alone in this fight. Things seem so bad now, but once I get my TSH levels back to normal, I’m hoping my depression stops. This is the third time in my life this damn disease has gotten so bad that I feel like a prisoner in my own body. I have hope that it will get better again.

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    • Hi Janis,

      You’re right: it is good to know that you’re not alone and you’re not going mad, and that what most people think is a trivial disease is actually life changing. Stay healthy and get well. Ian xxx

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  4. Reading this story actually made me cry! It took me back 20 years when I thought I was dying and would walk around my garden at night just looking up and asking God WHY? and WHAT THE HELL IS GOING ON? I too was off the Richter scale with results and it took a long time to balance. So, 20 years on (now mid 50s) I have researched my needs and learned that Vitamins like B12 and D are incredibly important to hypo patients – vitamin levels are never tested by doctors! until you ASK! Bad days still come and go but when I read a story like this I feel I am not alone and all information shared is help in itself to get to a healthier life.

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  5. I can relate to everything you say. A Dr Barry Peatfield saved my life by diagnosing underactive thyroid. He also said because I’d been undiagnosed for so long my adrenals were affected. I also sought the help of an American Dr called John Lowe and his wife Dr Gina Honeyman. I have been using T3 and Isocort (adrenals) for many years and feel very well. I do have moments of exhaustion usually brought on by stress and anxiety. I found thyroid help sites like About Thyroid run by Mary Shoman and also Thyroid UK. The diagnosing of thyroid problems in this country is diabolical and the treatment even worse. Amour which has all the thyroid hormones T4, T3, T2 etc was used up until the 1980s but because of the cost Thyroxine (T4) was introduced because it was cheaper. There are many people suffering from this awful condition and being treated for other diseases when all they need is a small amount of thyroid hormone. I am very pleased you’ve found our the problem with your health. Good luck for the future.

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  6. Ian, it is great that you are spreading the word. I have suffered all my life from some of your symptoms, the most debilitating of which I have found to be the depression. When my doctor diagnosed me last autumn and realised my surprise, he told me proudly that his youngest patient is 1 month old.
    I would just like people to understand that the symptoms are so amazingly diverse that it is truely difficult for doctors to diagnose it from symptoms alone. Of course, this is no excuse, but I can understand it. I dont have half of your symptoms, but , surprisingly one which got better with the thyroxin was my car sickness – wierd or what! I mention it so that possible sufferers take the effort to exclude Hashimoto or thyroid problems from possible causes. My diagnosis and medication has been the landmark in my life which I have waited 49 years for, and it is so easy – no magic potions, no mind bending drugs. I feel like I am ‘on the other side’ now. I can reflect on things, dont have the mood swings… my list could go on and on.

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  7. Hi Ian – good to read your story and thank you for sharing. Hashimotos is an Auto-immune condition which I too have….hubby too ! It is sometimes better to think of it an AID rather than a thyroid problem as so many things need to be considered. Most importantly the health of your gut where all the problems start . The immune system is in the gut lining. So should you plateau after the honeymoon period – hopefully you won’t – then do consider looking at boosting the immune system and of course your diet. We discuss it at great length on the forum of HealthUnlocked/ThyroidUK.

    After a lifetime of illnesses and surgical interventions – whilst still working and caring for family – I was not diagnosed until 2005 here in Crete at the age of 59. Now almost 67 and enjoying much better help thanks to the knowledge and wisdom of lots of good people on the Forum. Good levels of B12 VitD Iron Foltes and Ferritin are vital for conversion of T4 into T3.

    Wishing you continued health……….

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  8. My doctor found a lump in my thoart then when they removed it they said half of my thyroid had been removed I then had to go on the tablets
    I have all the symtoms that Ian had said and a lot I didn’t know it caused
    My weight has not gone down on the tablets and some things have got better but has a lot of people I put it down to middle age spread.etc
    It was good to read Ian’s infromation I found it was like loads of pennies dropping
    Thankyou Ian for your article

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  9. Your quote about how few men have Hashimotos is difficult for me to understand as I believe VERY FEW labs will test for Anti-bodies when the TSH is in range. Both my husband and I had ‘in range ‘ TFT’s but high anti-bodies ! Thank goodness we live in Crete otherwise I would still be declared Normal and be crawling around on my hands and knees had we remained in the UK on retiring.

    Think it is the same old problem too – women are more inclined to go to their GP when unwell. Men retain the stiff upper lip and carry on or so I have read !

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  10. Well done on getting treatment. I went through hell for years ‘dying’ with hypo thyroidism. After 8 years of going from death to full vibrant health all I can say is don’t do T4 drugs only (Synthroid, thyroxine). You need treatment for all the Ts with natural dessicated thyroid and you need to self dose until you dose out symptoms. It takes tons of your own google research and talking to other sufferers to figure out what’s best for you, but it will be worth it to get your full health back. I recommend anything by Mary Shomon, Stop the Thyroid Madness. You should also take all your supplements – magnesium, vit d, selenium, iron etc.. and consult with a natural doctor who will prescribe NDT and increase doses according to symptoms, NOT levels.
    Good luck!!

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  11. Hi Ian- I linked to your site via the Guardian. Your article is brilliant. I think the thyroid is like the station-master for the whole endocrine system, you know, raising and lowering the flag for the slow hormone train, clearing the tracks for the express, etc (haha) Please keep writing! I have been wondering about a couple of things i.e.:
    Is diabetes linked to thyroid imbalance? Are endocrine systems disrupted by electro-magnetic fields and/or genetically modified food products? My guess is yep, just like the pfoa stuff in teflon and synthetic fabrics causes a buildup of blood toxins detrimental to thyroid health (another Guardian article)
    Anyway, kudos to you, I’ll be trolling your site for a bit…oh gotta take my levoz!

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  12. My life has never been the same since being diagnosed with Hashimoto,reading your story is so much like mine thank you for sharing it the one difference is…..l have had the hip replacement 🙂

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  13. Hi Ian , although my low thyroid hasnt reached your levels Im on 200 ug /day its really supportive to hear that the symptoms start the same and the doctors in my case do need to go and get lectured on it !!!!! . Treatment in W.Midlands is so much better than here in Aberdeen … no real health checks until I went to a GP practice run by Aberdeen Uni … says it all ! . One thing for fellow readers and not widely appreciated – with the fight against weight gain – do not fall for Aloe Vera detox diets at all costs . Low or non functioning thyroid makes it even easier for the Aloe concoctions to strip out Potassium – which to my own horror left me with near bone breaking cramp around my spine and calves and severly hypokalemic . I too will be getting my B12 levels checked. My father has that particular joy as well . Best wishes Phil Bailey

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  14. Thanks everyone for commenting and following me. It’s really good to know that there are people out there who understand. I’m wondering what to do next. The Guardian article had such a lot of feedback that it would be a pity to lose the moment.

    Anybody got any ideas?

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  15. In response to your request for ideas, I would suggest that it could stand alone. I read about HealthUnlocked/ThyroidUK here which I then visited and found very informative. Could this blog not be ongoing or does it have to close. I used to visit a ‘chat room’ like this in 2007 whilst dealing with a misdiagnosis I found it very helpful just sharing with others in my otherwise very lonely situation (I dont live in an English speaking country).

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  16. Mine went un-diagnosed for 3 years. I had post-partum thyroiditis that triggered Hashimoto’s. Unusually I didnt gain any weight and so think this might be why it was never considered my problems were linked to a dodgy thyroid!

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  17. Thanks for your really interesting article. I just wanted to mention the opposite side of the same fence, hyperthyroidism which is overactive thyroid. 2 very good friends, both doctors missed it in me. I had lost about 15kilos and it coincided with an effort to lose weight as well as doing a lot of exercise. I had been congratulating myself on how well I had done, I felt in control. One day in a business meeting I poured some coffee and my hand started to shake spilling coffee all over the place, I thought Parkinson’s disease? I was 50 at the time. I went to the doctor and he asked me to take a blood test. Three days later the result came through as hyperthyroid. One week later I was rushed into hospital with a thyroid storm. A rare occurrence where the thyroid goes into overdrive my resting heart rate was 130 bpm. It took a year and a half to work out what to do and during this time I went hypo for about 6 months. This coincided with a difficult time at work and I remember small things making me angry, I remember kicking doors and punching walls my memory went, I had itchy skin and wanted to sleep a lot. Eventually I had most of the thyroid removed, that was 10 years ago. I take thyroxin and everything is mostly fine, but sometimes my energy just disappears, but perhaps that is really just getting older!

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  18. It’s great to hear of other people’s stories
    What about a Facebook group
    I had a message from ups saying about a parcel they tried to deliver to me and I owed money it was only about an hour after joining this site so I phoned ups and they said it is a spam so be careful

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  19. Hi Ian – as to becoming an Endocrine Mentor – with all you have gone through and now reading the stories of others here, it’s just a question of reading up on all of it and advising like they do on the Thyroid UK site but with your expertise as a writer and acquired knowledge on the subject to date you will find the edge to draw in the followers as you have done already with your own story !! All us sufferers are continually looking for answers/help/information as to why we feel so wretched some/most of the time and we all know that the doctors and specialists really don’t have the solutions we are all looking for. Angela x

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  20. I saw with gratitude your piece in the Guardian….I was ill 12 years too and going down fast…. got a new doctor and he saw it!Suddenly my brain was better but the weight never went away alas.Before that they said it was the menopause/stress no tests were done …good luck.I am retired so I don’t have the agony struggling to work
    and so on

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  21. HI Ian. It s great that you needed to get your story out there; not to mention those ladies who have appeared on ‘This Morning’ TV Show who have been at deaths door until being diagnosed with a thyroid problem. There are so many groups – thyroid uk, thryroid patient advocacy, health unlocked with their own thyroid blog. Then, there are all those sites with those doctors in the uk who are up against the general medical council for speaking out like Dr Peatfield who has written an excellent book on the matter, Dr Skinner etc and all those in the States such as Dr Lowe and many others, the list is endless. Whilst it is good that these groups exist and problems shared, the message is going around in circles; ;’why don’t doctors this or that’! Doctors aren’t going to do anything other than what has been deemed for them to do as they are tied to the rules of the GMC. The only breakthrough has been those ladies who not so long ago were able to address the Scottish Parliament about this. If you haven’t seen the video this it is imperative that you doso.
    I was told I had ME ten years ago. I refrain from saying ‘diagnosed’ as it was only a process of elimination so not really what you call a diagnonsis! My NHS Thyroid results are ‘normal’ but having done two tests privately these come out as ‘ extremely fatigued’ and poor. Also, being slightly hypothyroid. What concerns me is that it’s all very well getting better with private care but its other ailments that continue to be a problem that NHS don’t realise that its a thyroid issue. As I’ve said there is a wealth of info’ re the abysmal lack of treatment and recognition of this issue. It needs someone like yourself Ian to try and take this further; to ‘make a noise’ so to speak. Ive tried contacting tv channels, channel4 in particular as their Embarrassing Bodies did a saliva test which is not recognised by NHS. I’ve also tried to contact Lords David Puttnam who has ME and bring this to his attention in the hope of bringing about a Lords debate.
    Until such as the US group, ‘Stop This Thryroid Madness’ people; the Thyroid Patient Advocacy UK or doing something proactive as per those Scottish ladies – how amazing are they to get the Scottish Parliament to give them parliamentary time – then we will still be in our own private world of misunderstanding, extreme and foul symptoms that renders a large percentage of the population hardly living.

    If there is anyone out there with some clout, no matter how small can we get it together with the media, tv in particular. Anything!

    All the best.
    mel

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  22. This is really interesting. If there is so much misinformation and misdiagnosis about it then I just wonder why. Thyroid problems, like my Hashimoto, have such a cheap treatment and so I dont really get it. I was diagnosed with ADHS in 2007 and took medication for it for 5 years, until September 2012 when I started taking thyroxin. After I took the first thyroxin tablet I never took another ADHS tablet, amazing really, I just dont need it at all anymore. It has all gone (relatively speaking) mood swings, depression, concentration… the list goes on. I wonder how many more adults have discovered ADHS in adult life (with welcome relief at understanding that it has a name) whereas really they have thryoid problems.
    Thank you for all those good sources of information etc. I look forward to checking them out. I will just google ‘thyroid scottish parliament women’ to get the video you recommend. I hope it works.

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  23. I was diagnosed with an under active thyroid since I gave birth to my daughter. Mine like yours was one of the highest readings they have seen like your self a 99 . Mine recently has started getting dangerous I a have been passing out a lot (very scary) my meds have been raised and I’m now starting to feel a little better but still feels like my heads in fog. Thanks for sharing your story as some times you can feel alone with this illness

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  24. Hi my names Karen, I think it’s appalling that they did not in 1st place do a blood test. That’s normal procedure. My 18 year old daughter has recently had to have her thyroid removed as it was dangerously over active and unable to be controlled. However, even though she had a mild heart attack and black outs they cancelled her surgery twice! If it was life threatening why leave it! She is very slowly on the mend with regular check ups and will be on thyroxin for life now to do the job the thyroid used too. And on top of all this she is also carrying my grandchild. The pregnancy is high risk, but everything is fine so far. So fingers crossed. And very glad your feeling better now.

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  25. Reblogged this on ayannaniambi and commented:
    A very thoughtful and important topic upon which I will be researching even deeper for my first semester of “the college classes.” 🙂 Anyway, my mother has Graves’ Disease, so this is on a very personal for me – which is why I chose it as my project topic. I have big, longterm plans for this project.
    A link to the article on The Guardian, as well: http://www.theguardian.com/lifeandstyle/2013/sep/08/underactive-thyroid-was-slowly-killing-me

    Like

  26. Hello Ian. Your article is very well written and quite frightening. My son has Hashimotos and has been ill for years. He has seen his GP a few times; he takes the tablets. He is not better. I want to find a consultant who specialises in this illness. Is there anyone – ? I hope you get the best treatment. You write so eloquently and this is what will help others. Thank you

    Like

  27. Hi LDM,

    Sorry to hear about your son. How old is he? I personally don’t know a good consultant but, like they say, I know a man who does. Well it’s a woman actually. If you want to send my your email I’ll get you two connected.

    Ian x

    Like

  28. Hi Ian – I came across your article in the Good Health section of the Daily Mail whilst sitting in a cafe in Lisbon on holiday. What a nightmare!

    I totally understand how you felt, my TSH levels were 127 (!!!!) by the time I was rushed into hospital one dark night. I had lost the ability to speak and thought I was having a stroke. I’ve never been so frightened.

    Its all much better now, I regulate my own thyroxine intake, and have a GP who will let me do so. After all, he doesn’t live in my body.

    I did have a set back about 18 months ago when I was under a great deal of stress and had to try to get back on a level of medication that suited me. However, I don’t take anything for granted and have to understand when I’m having a ‘bad time’ or that when I’m overtired my heart goes into overdrive and I get palpitations. I’ve also been diagnosed with Sarcoid Disease – not sure if there is a connection, its also an auto immune disease.

    I’ve suggested to a couple of friends that they should have a thyroid function test, but of course unless you’ve been in a really bad place you are too frightened to ask or even demand these things from a GP.

    It should be a part of a regular health check.

    Nice to hear that you are back writing again. Good luck with it,

    regards

    Pauline

    Like

    • Hi Pauline,

      Thanks for commenting. I’m glad to be in touch with people who share my experience.

      And thanks for the kind words. It really is appreciated.

      Stay healthy,

      Ian x

      Like

  29. Hi I have just been diagnosed with an under active thyroid I’ve felt so ill for at least ten years with depression hip problems constant bowl problems chronic fatigue dry skin thin hair god I thought I was dying not to mention the weight gain and strain on my marriage because I just didn’t haven’t the urge or energy in the bedroom what’s made me more angry then anything is I’m on tablets for depression and pain killers for my hip problem and a blood test 3 yrs ago showed up border line for my thyroid problem but I was left to struggle on for 3 yrs if my then doctor put me on medication then I doubt I’d have to take the other meds you story related to me so much thank you it pushed me to go back to doctors and get re tested

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  30. Hi Paula. I can’t tell you how much your comment means to me. I’m SO pleased that my article made a difference. And I really hope that this means that you’re on the road to recovery. Good luck! Ian x

    Like

  31. I’d love to know the identity of the person from California who visits this page practically every day. Come on – put me out of my misery…

    Like

  32. Thank you so much for sharing your story. I am so sorry to hear all of the pain and everything else you went through. I myself have an under active thyroid and it can be a struggle at times for sure. I actually started my blog back around October or 2013. Long story short I had a NDE (near death experience) in February of 2013 and I had to learn how to heal in many ways. The one great thing that came out of my accident was I knew that I wanted to work on my own blog. We face many different challenges in our lives that can push us in ways we would have never of imagined. Stay strong and God Bless to you and your loved ones. I am now following your blog. Please check my blog out too http://lusciouslivingtoday.com/

    Like

  33. Hi Crystal,
    Thanks for the kind words. Very sorry to hear that you have suffered with this horrible disease. Thanks for following me and I hope that we can keep in touch. Ian

    Like

  34. Ian, thank you so much for sharing your experiences. You may have saved a life. I had one of my thyroid lobes removed in 2008. I am supposed to be on Thyroxine but the doctors say that I do not need it. However since the past three years my weight has ballooned.. I am in and out of depression and have to rely on sleeping pills to sleep sometimes. Nothing seems to be moving and I am constantly tired and out of breath. I have suggested to my GP that it might be that the remaining thyroid is now under active or not active enough to sustain me but she does not seem to be taking me seriously.

    I will print and take your write up with me to show her when I see her next week. Hopefully she will listen and do more investigation. Please apart from blood tests were there other tests which helped to diagnose the condition.

    Like

      • Dr Peatfield is an amazing man – he was my childhood doctor and came back into my life over 40 years later to help with my thyroid problems. A truly incredible inspiring man with a huge zest for life. Reading his books is an absolute must. Regards and good luck.

        Like

  35. A member of the medical profession once said to me that he thought everyone should have blood tests to check the thyroid from the year dot and regularly throughout life. It would certainly be one way to avoid doctors failing to diagnose. I was lucky and my hypothyroidism was diagnosed in the early 1980s after I started worrying about why I was becoming so lethargic and was freaked out by the bizarre texture of my hair. Your article has answered several questions I didn’t know I wanted to ask and makes me wonder about breaking my hip three years ago when I have no signs of osteoporosis. Fascinating article. Oh, and before I forget, thank you very much for following First Night Design!

    Like

  36. My husband, too, was diagnosed with hypothyroidism after many years of complaining of a variety of symptoms and getting little to no help from medical doctors (or his wife). Thanks for your shameless promotion. I put your book on my Amazon wish list. Just got to finish reading all the books I’ve already purchased. Crap. So many books. So many blogs. Plus I have a kid and a husband.

    Like

  37. Reblogged this on Stevie Turner, Indie Author. and commented:
    I can sympathise with Ian’s plight quite well, having suffered from thyroid cancer for 12 years. With no thyroid and having to stop thyroxine for 2 weeks in 2006 for radioactive iodine treatment, I came to a slow halt and then stopped! Look after your thyroids folks – thyroid disease sucks…

    Like

  38. Thanks for highlighting this insidious disease. I’m hypothyroid, too, and remember the “soul sapping exhaustion” you referenced. I couldn’t walk three blocks to the park without being so exhausted I had to sit on a park bench to regain my strength. I usually sat and cried out of sheer frustration. Thankfully, I figured out what was wrong more quickly than you did, though my blood tests were borderline and the GP wanted to wait a year–A YEAR–to test me again despite the rather obvious goiter pouching out of my neck. Finding the right doctor is so important. I’ve been on thyroid meds for years now and it made a huge difference. Glad you are working your way back to normal. Good luck with the new book.

    Like

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