8 years ago I was getting into state of myxedema coma with perfectly normal thyroid results and T3 saved my life...

I was just wondering how many people around the world have perfectly fine TSH, FT4 and FT3 but in fact are dying because of untreated hypothyroidism on cellular level? And how many died and nobody even knows what caused this? I am one of those persons, I was terribly sick for years, my husband and kids had to take care of me while my condition was deteriorating over years. Went to many doctors, passed to several wrong diagnosis and needless treatments. Then 8 years ago I started to lose my mind, I was so puffed up and swollen that I couldn't breathe. I was hospitalized but they didn't have a clue what is wrong with me. All that time my thyroid results were fine and I was dying. They gave me some injections, vitamins and diuretics and sent me home to literally die. My husband did a lot of reading, he told me your symptoms look like you are hypothyroid but you results are fine but there is nothing else that we can try so I ordered some T3 for you. I hardly remember that, my mind was off. Anyway, this last thing worked, I stayed alive and during time I was getting better and better to do my own research but although 8 years passed there is still not enough said about us - people with normal results but still so hypothyroid that we can die. Why is that? I think there is lot more of us around than it is usually though to be.

[jimh111]

I was in a similar situation but was diagnosed by the late Dr Gordon Skinner. I needed up to 120 mcg L-T3 but it is much lower now. I'd be interested in knowing what dose of L-T3 you are on now.

Jim.

[SAMBS]

Hi soapmania - sounds like much of my life history! Except I don't know what myxodema is and I don't even want to research it - it might frighten me to death

I've just posted my own results today and an answer has suggested I need T3. Sambs. I hope you are feeling and doing very well now. I've been on Levo since 2000 with health disintegrating since then - although lots of it started going wrong since birth. I'd never made the connection and don't know where I'd be without TUK now

[Hidden]

Soapmania, I also wasn't properly diagnosed for years. Also because my thyroid results were always more or less within the range and nobody wanted to give me any treatment. And I was so hypothyroid for so many years, it permanently damaged my heart and destroyed my life. First it took me so long to understand what is wrong with me and then I had to start self-medicating. But it's good that I did it, I think I wouldn't be alive now if I didn't do that.

[Marz]

Thank you for sharing. We are held to ransom by inadequate blood testing - and by people who do not understand how to read the results. They are called Doctors. I just smile politely and do my own thing

We see Hypothyroid people around us every day - mostly undiagnosed - on a cocktail of drugs for all the various symptoms - which is also slowly killing them.

Treating the underlying cause would save the NHS a fortune - but of course would not make any money for Big Pharma. It's a conspiracy of the very worst kind.

Hope you are continuing to improve.....

[shaws Administrator]

I am sorry you had a long and sorry story to tell us too. It isn't unusual on this forum because most either have not been diagnosed because the blood tests 'don't fit' with the modern method of diagnosing. It is indeed a blessing your husband bought you the T3 which saved your life and the family's.

It is a disgrace no doubt about that and I suspect many - even if they didn't die - have had an awful life of ill-health and misdiagnosis.

I wrote a bit on this theme earlier and you can look at my response on this linl. I, myself, take T3 only and am well. We are very angry because we thought our Endocrinologist/doctors were educated but apparently not. We've had a few similar posts this wekk.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

The guidelines inform the doctors to only take notice of the TSH which leads to horrendous stories like yours. Many doctors in the UK have been persecuted and lost their licences due to following the 'old fashioned' method. Strange no-one died in those days due to being undiagnosed as only clinical symptoms were used, the patients temp/pulse (usually low) and so on. There are around 300+ clinical symptoms and it is doubtful any are known by the medical profession. They don't need them apparently, so the suffering goes on.

I am glad you are now progressing but most of us on this forum nearly 40,000 have had to do the self-searching and self-medicating in most circumstances to recover or have a life at least.

We've had some very sorry stores on this forum. At least it allows members to get things off their chests as no-on who hasn't had hypo will realise how badly diagnosis is world-wide now, due to the influence too of the Pharmaceutical Companies who, I believe, give monetary incentives to the Associations and doctors, particularly in the USA.

[Maria-1966]

Hello, in 2004 I got a severe anxiety/panic attack in the street, I was taken to a renowned NYC hospital and they thought it was my heart--I was given a blood thinner which thinned right into my lungs--so my lungs were drained...soon after I was placed in a semi-coma induced state because they did not know what I had. After 8 days I finally woke up - after 13 days in the hospital I was finally diagnosed with hyperthyroidism given meds and sent home. SMH. Anyone else with this experience?

[DeniseR]

My results were all in range too! I wasn't dying but I was barely living and felt well on my way! T3 definitely has saved my life and given it back to me. I feel very lucky!

[fibrolinda]

tests'normal' but all the symptoms... hypothyroidism type 2. the hormones just circulate in the blood but t3 doesn't get to where its supposed to go because of poisoned mitochondria acting like bouncers letting no one in. I shudder to think how many suffer because of blood tests that are useless and because treatment is no longer based on symptoms. Oh I'm one... self-medicating on NDT.

Linda

[truthseeker136]

I am going through this right now. I have just realized that I put on 100 lbs because back in 2009 and throughout my doctors would not listen. I feel like I am slipping away mentally. I am waiting on some money coming in to go get tested and treated. I'm having severe symptoms like dizziness when bending to pick something up, my heart feels like it won't pump enough blood and getting weaker. Had HR of 95-100 on my Fitbit HR last night when I was lying in bed.

[truthseeker136]

soapmania can you describe what exactly you went through. I want to compare my symptoms

[Lisasones]

My TSH was 2.9 and I felt like I was dying - Gp refused any other tests - went privately, I had normal T4 and virtually no T3 and had had the symptoms over twenty years, gradually getting worse and worse - I've been on T3 six months and have my life back, literally - the tests appear normal because they are designed to test thyroid 'stimulating' hormone (tsh) from the pituitary this is not the same as the thyroid hormones we end up with in the body - that's my over simplified take on it anyways

[Astridnova]

This happened to my mother. For years she sought a diagnosis and was given utterly nonsensical responses by doctors. Her thyroid tested normal, but she had many thyroid symptoms and signs. She was treated with broad spectrum antibiotics many times for chest infections and because she was vagued out, she rarely finished them. She developed clostridium difficils, which was diagnosed as colitis and treated with diet. Eventually she went to hospital with severe diarrhoea and returned, apparently cured. However she soon spiked a huge temperature, which we were at first not aware of. When we became aware of it, she was delusional. We brought her temperature down with antibiotics and panadol, but overnight, she completely lost her memory. Her thyroid was retested and appeared slightly low, so she was put on 25mcg thyroxin and then 50mcg, which remains her dose. I am currently interstate but I will try to get her onto dessicated pork thyroid with my doctor's help. Nothing will help her memory, unfortunately. She also has B12 deficiency, which was undiagnosed until I asked for the test. Found she had been tested; they just hadn't put it together with her symptoms.

I have come to the conclusion that modern medicine is vastly overrated and maybe the GPs I saw when I was young (in the 1950s and 1960s actually knew more than the GPs now, who are so ruled by Big Pharma and their regulating bodies that they dare not think outside the box.

[truthseeker136]

This post helps understand whats happening at tissue and organ level w.r.t thyroid hormones

hashimotoshealing.com/5-key...

[SilverAvocado]

I've had a somewhat similar situation. After my TT I got to the point where my blood tests looked ideal, with T4 + T3. But I was still housebound and in bed most of the time. I didn't have much more mobility than I'd had on no medicine at all.

I'm now taking NDT and things seem to be much better. Even with TSHs of <100, and 50 I still feel much better than I felt with a suppressed TSH on synthetics.

[Hidden]

Thank you all so much for sharing your stories. There is so many of them so I can't reply to each but just wish I can give a big hug to everyone. There is a lot of us, I knew it and there is plenty more around that don't even know what is happening to them. We were the lucky ones - we are alive and fighting but I feel so sorry for all those desperately ill and all those unfortunate souls who died because our condition is not recognized and our illness does not exist for the medical system if it is not showing in the results.

[Hidden]

My thyroid blood tests were always normal! And I was so sick, I wasn't getting into coma yet but I did start to lose my memory, my IQ drastically declined and I had horrible swelling I looked like a balloon. I was in bed all day long, I passed out very often and yes it felt like I was dying. I am pretty sure that I was dying. I was also receiving wrong treatments because they didn't know what to do with me so they just gave me this and that. All wrong. I started self-medicating with T3 and saved my life + 80% of all of my symptoms disappeared. Still had this water retention and mucin but just recently I found out that I also have insulin resistance, it finally showed on the tests as well, for years my tests were normal in that matter as well. So besides T3 I take Metformin now. All this is just showing that tests are not reliable and that sometimes they are late, for some that can be fatal.

[Hidden]

wow, how lucky u started t3... i am exactly at the same point, i went with horrid chest pain and doc said it was.... indigestion! i am so ill, yet bloods are now 'normal' on levothyroxine... hope u r lots better now...

[Hidden in reply to Hidden]

I am much better, thank you. But I am worried about you, if you are sure that this is it do something before it's too late!

[Hidden in reply to Hidden]

its just so sad we have to fight so hard , and wait so long... wtf are these doctors actually learning about thyroid when they go to med school? i am not the sharpest tool in the box, but even i can see things are sadly amiss here! i have gone from running , cycling, doing all excercise you can imagine, to not even being able to climb the bloody stairs, literally, without being breathless...no way are these plonkers ignoring me... rant over , just glad you are ok... your journey was so bad for you... xxxx

[Hidden in reply to Hidden]

Fight for yourself, it's the only way. Don't let ignorant doctors defeat you, they don't care, it's not their life - but it's yours and the only one you have, so don't let their stupidity bring you down xx

[Hidden]

yes thankyou, i agree... woke up this morn tingling all over, swollen hands n face, i used to be a half decent looking bird lol.... i am going to bang on every door i can , until i get help, or i will die trying... its so unfair, and so bloody simple!! sttm book is like being told that i am not mad or a hypochondriac after all!!

i think we are all on here for help, its so sad we cant just walk in a surgery and get it... i could get a gastric band or boob job on nhs but not something as serious as this fixed.. not fair xx

[Hidden in reply to Hidden]

Yes, isn't it trivial that some completely useless things can be fixed with no problem while our condition is not even recognized by many. Don't die trying to get some doctor to help you. It almost got me there. Get things into your own hands - try self-medicating, for some of us it's the only way out, the only way to avoid misery or death.