Thyroid UK
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Did anyone really have heart damage from NDT or T3?

Hi all,

I have just had a frustrating conversation with my doctor. She has more or less let me find my own way through the thyroid jungle, giving me T3 when I asked for it, and now Armour, however, she feels pressured by the endo at the local hospital to warn me about the dangers of overmedication and possible damage to the heart. I agree with her that one should be careful, but we disagree on the basis for dose adjustments. She wants to base it on blood tests only (she doesn’t get the TSH surpressed on T3 bit), and when I say my pulse is around 60, my temperature under 37, she still comes with the heart thing.

Does anyone know anyone, or heard about anyone, who had heart damage from NDT or T3?

Thanks 🌸

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No, but there is a report of heart failure and possible death due to LOW T3. I posted this in April of 2017.

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Yes, this I have heard about, and it is surprising that doctors don’t take this into consideration.

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Sometimes I think not treating patients effectively for what we need now by warning of possible future problems may be a way to dismiss us when our requests challenge their thinking.

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I’m having the same battle regarding heart damage plus the osteoporosis issue and my Endo cannot offer me any substantial research. I’ve even stood with a pen and paper ready to jot down the references. I’m still waiting.

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Maybe if we all ask for research, they will stop saying it 😄

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Just love it!

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Great idea but probably won't happen. Too much money at stake for greedy people.

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My doctor gave me the same speech. My TSH was very low so she said I was going to get cardiomyopathy and osteoporosis. Like you my pulse was 60, my temp was low, and my fT3 low. My endo actually said, 'That's interesting!' when I told her what the GP said.

Doctors don't seem to be able to discern between true hyperthyroidism and low TSH due to exogenous pulsatile administration of thyroid hormones, especially T3. They all give the ridiculous fear-mongering speech. In their defense, they really don't get it.

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No, they really don’t get it. And maybe the more they feel they are on unstable ground, the more they push the pharma jargon.

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What gets me is the way so much is made up as they go along with no empirical evidence to support such tosh. Perhaps some are retrained double glazing salespersons?

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What annoys me the most is when doctors compare T3 to cocaine or heroin. They have T3 running through their veins, but that doesn't seem to cross their minds.

And some of them think that everyone would feel better if they took Levo. It never crosses their minds that people who are hyperthyroid seek help for it because it is unpleasant to live with. Why would anyone voluntarily make themselves hyperthyroid?

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Something I'm annoyed about after seeing my Endo yesterday - when I was very hypo and barely able to walk, I told her my pulse jumped up very high, 120 or more, as soon as I stood up or did very basic activity. At the time it felt like huge aerobic exercise, so I was just offering more evidence.

At that time she said 'Oh, some of us just have a high pulse', didn't even measure it! But today in her office, now I am self medicating and my freeT3 is well over range, she grabbed my wrist to take my pulse. Then she started going on about the speed of it! But its actually considerably lower than when I was more hypo.

It does amaze me in general how doctors will take a single piece of evidence completely out of context, and only look for it when they expect to find it. This is absolutely no way to collect and interpret evidence. Luckily for me I have over 2 years of daily pulse measurements to fall back on, so I know it isn't high for me.

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I totally agree SilverAvocado - this is no way to collect and interpret evidence.

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Most doctors/endos are not the slightest bit logical. I love how they blow off evidence when it doesn't benefit their argument. My GP told me I would wear my heart out now that I've managed on T3 to get my pulse out of the 50's and 60's. Some people just have a low pulse, she said. She's not my GP anymore.

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Yes, its frustrating that they are looking at and interpreting evidence all day, but they don't have any knowledge of how to do it!

And make up their own strange stories to explain things they don't understand :p

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I have a new GP who thinks that everyone in the general population would benefit from NDT because hypothyroidism is so under diagnosed. He treats his thyroid patients with increasing doses of NDT until they feel well. I asked him about adding T3 to my NDT because I have an issue with relatively high rT3. He's okay with that, but he said he doesn't want to know how it works, he just knows NDT does work eventually. Ha, ha...well at least he admits he doesn't know.

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He sounds pretty great! Admitting he doesn't know is a great first step. And at least he likes NDT :)

The more I think about it and hear about the norm in other conditions the more I think huge proportions of the population probably would benefit from thyroid hormone. The medical establishment just really resists that idea!

Hehe, so maybe I just like the sound of him because he agrees with me about several things :p

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Yeah, that's why I like him too :)

I found him online and his site was spot on. Weight loss, energy, understands rT3, NDT, etc...

So he walks in to my first appointment and he is a bit chubby, lol.

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Sir Chubbsalot!

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I think his official full name is Sir Tardy Lardy Chubbs-A-Lot...I believed that you dubbed him that after he took 2 months to get my results back to me, lol...

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hahaha. That wait!!

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I am 74 and after YEARS of feeling bad from untreated hypo I am now just starting to feel better from effective treatment. And I have well-controlled a- fib. I am sincere when I say I would rather die sooner and feel well for whatever time I have left than feel dreadful much of the time and live to 90 (arbitrary number). I think it's called Quality of Life!

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I so agree, as I am sure many do.

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My thoughts exactly! And I am 38 now and had TT 5 years before. For the 3 years I have played by the standard and I was a mess...after that I took matters in my own hands and follow my own, trial & error developed rules. With better, consistent results.

So, yes, I completely agree with you.

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I think some get it but they don't want to risk rocking the boat for the sake of practising good medicine. To me greed and self-serving is worse than ignorance.

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A document that might be of use to someone. The subtitle is a bit eye-watering :

Low-T3 Syndrome

A Strong Prognostic Predictor of Death in Patients With Heart Disease

circ.ahajournals.org/conten...

It can be downloaded as a PDF.

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And another one :

Acute Effects of Triiodothyronine (T3) Replacement Therapy in Patients with Chronic Heart Failure and Low-T3 Syndrome: A Randomized, Placebo-Controlled Study

academic.oup.com/jcem/artic...

This one can also be downloaded as a PDF.

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Endocrinology - The thyroid and the heart

Thyroid dysfunction can have important consequences for the cardiovascular system, explain Dr C Mohammed Iqbal and Dr Unni Krishnan.

gponline.com/endocrinology-...

The above link has the virtue of being easy to read, which is ideal for the average GP. :D

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Thanks humanbean - very interesting!

«..although evidence to suggest that replacement precipitates coronary artery disease is poor.»

I am interested in knowing at what pulse rate and temperature people feel good. For me it is 60-65 and 36.9. I will start a new thread with this question.

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"easy to read". Years ago I took a writing seminar for writing professional articles. One of the things stressed was to keep sentences and information delivered at the 4th grade reading level. This was for nurses. Maybe 5th grade might be good for GPs.

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😄

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I was thinking 3rd grade for GPs.

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Better still!

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Useful reference! A few good quotes for anyone not going to read:

"AF and thyroid disease

Patients with AF have a higher incidence of hyperthyroidism.2 The prevalence of AF rises from 1-8 per cent in the general population, to 10-15 per cent in hyperthyroidism, although this may be decreasing because of earlier detection and treatment."

So even those with Graves are not at a massive risk of atrial fibrillation!

"Subclinical thyroid dysfunction

A recent meta-analysis revealed a 50 per cent increase in the risk of coronary artery disease at baseline and a 20 per cent increase at follow-up in patients with subclinical hypothyroidism.6

By contrast, subclinical hyperthyroidism is not associated with increased coronary artery disease or cardiovascular mortality."

Being hypothyroid can increase risk of heart-related issues, as we know subclinical is a pretty dubious descriptor. But it likely means these people are being given no treatment. While a little bit of being hyper doesn't cause similar problems!

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Hi HB. Thanks. Just downloaded and will read later. I did notice the date of publication (Feb 11, 2003). That's a long time for doctors to still be ignorant of the importance of T3.

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I agree!

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More likely to have an improvement. NDT contains T3. T3 is the only active thyroid hormone and it has been in use safely since 1892.

Rumours abound about it now as Big Pharma did their best to replace it with levothyroxine alone plus the blood tests. They've made pots of money plus, of course, the extras for the remaining symptoms.

Before that we were diagnosed upon clinical symptoms alone and given a trial of NDT. If we improved we were hypo.

The British Thyroid Association has tried to demolish NDT - by making False Statements about it. However, before the death of Dr Lowe, (he was an Adviser to TUK) he responded with the following and despite three yearly reminders before his death, they never did respond. How can the truth be overturned.

thyroidscience.com/Criticis...

Dr L would never, ever prescribe levothyroxine. Only NDT or T3 for thyroid hormone resistant patients.

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Started T3 in April and just called in my July refill (4th month). Each month there has been a significant price increase including my copay. My take is that Big Pharma has seen that T3 is here to stay and being prescribed more frequently here (US). So whatever money they may lose from less levo prescriptions they will recoup with T3. Win-win for them; no-win for patients.

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I think you are correct.

In the UK (where an inquiry is on at the present) T3 price rose by 6,000%- yes 6,000% with the rebound on the patients by the withdrawal of T3.

We had a debate in the House of Lords yester in Parliament with the Lords discussing this huge problem.

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Also last month the pharmacy could only partially fill my prescription and filled the rest several days later after they scrounged around to find one of their other stores whose stock was not depleted. This tells me that Big Pharma wasn't manufacturing a lot of T3 as the market wasn't there. Now it is and they are scrambling to keep up with demand. That's why I called in refills this early for July- to give them time to assemble my meds.

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Big pharma caused the dilema by increasing the cost of T3 by 6,000% so that the NHS withdrew T3 from patients, cold turkey causing panic.

I hope you've got your T3.

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I did. But took 2 trips to the Pharmacy (not a big deal) but this month I called in my July refill for T3 yesterday (June21). Usually I call in the last couple days of the month and all prescriptions are available. I feel bad for you guys in the UK. Because of our insurance we won't be denied the med. But it can bite us in the @#$ in the long run. We are each given x amount of dollars/year by medicare to pay for our meds-like a bank account. We can choose what drugs we buy but when the account is used up it is out of pocket 100% until next year. Se we shop for the cheapest cost (retail) to make our drug money go as far as possible. And now our illustrious Pres is looking at ways to cut our medicare and social security benefits so we don't know what our amounts will be next year. Usually they go up a little but worried about 2019. He is trying to steer as much money toward his own shameful projects like his immigration/separation policies.

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PS. Maybe a good side effect of this increase in production will be as they manufacture more T3 they will pressure doctors to prescribe and we won't have to fight so hard to get it. I just hope we don't have to sell our first born to pay for it.

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Also, Dr Lowe only took one blood test i.e. for the initial diagnosis. Thereafter it was all about relief of patients' cliniical symptoms. Symptoms are more revealing than a blood test result.

They try to scare us into submission.

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This is very true. However, my doctor is genuinely worried about me, because she does not have the knowledge. She is very sweet, and I find this more difficult than doctors just repeating the lies.

Who is she going to listen to - the endo at the hospital, or me?

I really would like her to listen to me, for her other patients’ sake.

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She would be afraid of using her initiative as she is a new doctor. They are told these rumours, I assume, when they are training but these are very, very untrue.

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No but long term inadequate treatment of my hypothyroidism was documented by an Endocrinologist and my Electrophysiologist as a major trigger for my A Fib diagnosis in 2011. I would rather be treated effectively for what I have now than given less needed medicine now for some future problem that I may never develop. All we have is the opportunity to feel as well as we can now. I believe if my hypo had been treated properly I would not have developed a-fib.

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How many times I have thought «if only I had known then, what I know now»

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Me too. And also wish I had access to information like we do now. I give "Dr Google" and websites like this credit for my receiving the best medical care I can find currently. Knowledge is power which is often why powerful people try to keep it from the rank and file.

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My ectopic beats improved on T3.

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The heart and brain need the most T3 as well as the millions if not billions of T3 receptor cells in our body. If we listen to doctors and Associations they insist that levo is all that is needed. Most on this forum do not recover on T4 but can on T4/T3 or NDT. They keep insisting that we don't.

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We know people can be poor convertors of T4 to T3 but I wonder if anyone is doing research to find the root cause of our conversion difficulties. Is it a vitamin deficiency, an autoimmune problem, poor nutrition, depleted soil, too many CT scans or MRI's with contrast media, too many routine chest x-rays? And by the way, when we get a chest xray why isn't our neck area covered with a small protective lead shield? This practice was started years ago in the operating room when it was found that OR personnel had a higher incidence of thyroid problems. Prior to this when xrays were done during surgery and we had to remain in the room we put on lead-shield aprons with scooped necks that left necks exposed. These are just my own thoughts but this seems to be a very neglected area of information. It could be something simple in which case I suppose the answers wouldn't help if they turned out not to be moneymakers or 'moneycosters'. We already know our vitamin levels have to be optimal for thyroid meds to work. Why not start there? This is of interest to me because after working for years in the operating room at age 39 I was diagnosed with laryngeal cancer. I was not a smoker , drank very little , and one doctor put forth the idea that almost daily exposure to xrays at work may have been a contributing factor. This idea was quickly ignored and suddenly no more was heard about this theory. The subsequent cancer treatment radiation was what knocked out my thyroid and started me on the path of what I call "fly by the seat of our pants" thyroid care for many years. Has anyone else gone through a similar experience? irina

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They should prescribed T4/T3 to everyone. I am sorry you developed laryngeal cancer and it could well have been due to exposure - it makes sense. They wouldn't want to emphasise in case you sued I should think. Did the op affect your voice?

We used to get NDT which consisted of all of the hormones a healthy gland would have produced (made from pigs' or cows' thyroid glands) and more conducive to the human body.

Big Pharma saw a 'money making machine' and decided that synthetic T4 alone on the assumption that it converts to T3 could make them profits plus of course, blood tests. But, as we know, not every person improves, researchers (several of them on different programmes) have found that most feel much better on T4/T3 combination.

Just think - if we develop other 'problems' then we get more prescriptions for the problem so big pharma gets more profits. That's what they are after profits, profits, profits. I have now read two separate doctors state that it was coruption by Big Pharma paying doctors and endocrinologist to prescribe levo that brought levo into everyday use. Even today doctors don't know the truth and the blame is put on us the patients.

You should copy and paste your question about your work as a nurse and probably exposure into a new post as it will be lost within this one.

My own personal opinion is that the Endocrinology know little except to look at the TSH.

We should be prescribed, prefereably, T4/T3 combination as that what quite a number of Researchers have found, that we improve better on a combination.

T3 is needed but the Endocrinology believe that T4 is sufficient. It may be for many but there are a certain number of others who don't recover on levothyroxine. I, for one, was far more unwell with many more symptoms on levo than before my diagnosis which took ages and no-one took a blood test until I myself insisted when TSH was 100. I was quite unwell. It is unforgivable not to realise a patient is hypo without doing blood tests as before we would have been diagnosed upon clinical symptoms - without blood tests. They have got lazy and just look at numbers and don't know any clinical symptoms. The purpose of replacement is to relieve them.

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That’s the right word for it - unforgivable. So much un-necessary suffering.

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Yes, the surgery and radiation (1984) for larynx cancer affected my voice. Over the years my voice has gotten weaker as my cords are very damaged and do not come together when I speak and it affects my volume. Now I whisper and my voice cannot be captured on automated phones so I need a friend to make these calls for me. After the cancer treatment was complete the thinking at the time was to keep me on a very high levo dose (300 mcg/day) to prevent thyroid cancer down the road. So I was, in effect, kept in an overmedicated state for years. The constant anxiety has been the hardest symptom for me to deal with through the years. When the dose was finally lowered to 100 mcg/day I felt fine for a couple of years until about 2 years ago when 100 mcg was no longer adequate and my (former) Primary Doctor refused to do complete testing and I started to drift downhill until this April. In my opinion it has been an unnecessary journey in many ways but not that uncommon. I do believe I am lucky to still be here and also lucky to have kept my larynx and not needed a permanent tracheostomy. I am sure my experience is not that unique. Fortunately my new endo has me on the right tract and I am beginning to feel noticeably better with still a ways to go. But there is a light at the end of the tunnel.😊

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I’m so sorry to hear about your experience, and hope you get better and better every day.

This forum should be on the curriculum for doctors - they could learn so much.

🌸

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Thank you, Elisabeth.😊

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Ask to be referred to an ENT specialist so that he/she can look at your vocal cords and may be able to do something helpful and may improve your voice.

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Thanks, Shaws. I have an appt scheduled for next month with an ENT doctor who specialized in hoarseness. I've also read somewhere about Botox injections helping damaged vocal cords so plan to ask about that also. (May not help the cords but at least they won't need a face lift! lol.)

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I have been told (I had throat examined recently) that the vocal cords are injected with the 'product' used for face lifts. It does fade away after a while but it might work. They had a brand new machine in the ENTs office and I think I was the first to be 'used' and I saw the video afterwards. It is amazing what they can do and here we are 'struggling' for the want of a decent diagnosis and dose of thyroid hormones which suit us and restores health.

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That sounds like what I've heard. I am happy to hear they have a machine in the office that doesn't necessitate going to the operating room. Will keep you posted. I wanted to see the doctor sooner but already have several appts for other things in July. I don't mind if the volume fades and needs repeating. I'd be happy to do that. People who have no problems being heard because their vocal cords work properly often don't realize how frustrating it is not to be heard or understood. Communication is everything and we need our cords for this. I have been hung up on, accused of making crank calls, and sometimes ignored by some because they evidently found it tiresome to try and understand what I was saying. Just venting. Thanks. PS The most exasperating thing about this problem for me is that 1) people overtalk me much of the time; 2) they speak loudly and slowly as though I have mental deficits because I can't 'speak up'; and 3) they feel they need to finish sentences and thoughts for me because I can't speak as fast as others. I do carry a pad to write on when it's important and have been known to write some terse responses when I get frustrated. The telephone is the hardest because often I have to get thru electronic systems before reaching a 'live' person.

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You're correct. I can start off fine but sometimes - in the middle of a sentence - voice goes elsewhere for some reason. Or even at the beginning as I croak rather than speak.

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Me too. Let's start a "Croak Club."! For people whose voices havea mind of their own.😊

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My doctor said that so many people who switch to NDT say that they feel so much better, and that they feel like they got their life back again. She continued saying that they don’t realize that they are feeling this way and have so much energy, compared to before, because they are over medicated, and this is very dangerous 😥

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I think your doctor simply doesn't realise how bad hypothyroid people feel. I'm sure there are plenty of people who became hypothyroid in their 30s (for example, after childbirth) who can still remember how they felt five or ten years before.

If doctors insist on using TSH (produced by the pituitary) to monitor us, without ever bothering to find out if the actual thyroid hormones we have are "normal" then many patients and doctors will never see eye to eye.

Another point has often occurred to me. Even if doctors are right about TSH (which I will never accept) and the "correct" dosage of T4 is all I need to be "well" then I don't want to live like that, even if it knocks 5 or 10 years off my life. I'd rather have some quality of life than none.

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How can a 'product' introduced in 1892 and up until the present day be so successful for people who have hypothyroidism? Before that those with hypothyroidism had a dreadful death and died of myxedema coma.

NDT was prescribed in the UK up until recently (removed just as T3 has been) as some people need it to return to good heatlh.

It makes sense that something that has all of the thyroid hormones as a replacement should still be prescribed.

Is it because it contains the whole amount of hormones the thyroid gland would produce if healthy? It is also not a synthetic hormone as is levothyroxine (T4) so may suit some bodies better.

It is still prescribed today by some private doctors but the BTA and RCoP has also made False Statements about it - rebutted by one of our Advisers before his untimely death. Did the two Associations respond? despite three yearly reminders for a response? No - because they cannot and if people were dying of heart problems due to overmedication that also may not be true due to the fact that if we take 'too much' we will feel so bad that we would reduce dose ourselves.

Dr Lowe requested - for three years - a response to his scientific evidence but they did not even have the courtesy extended to a doctor who 'healed' against the many professionals who have no idea how best to treat patients, neither are doctors given an option to prescribe 'tried and tested' thyroid hormone replacements.

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I believe Big Pharma has 2 major ways they treat old, tried and true medical remedies. First, they try to change the formula, if possible, by tweaking it just enough to make it possible to get their own patent on their new miracle formula of a drug that doesn't need changed so they can make money from the original successful drug. When this doesn't work, they denigrate the original drug and try to create a new and better drug, sell the doctors on the idea that their formula works better and then charge big money for their 'new' drug. An important part of their marketing strategy is to convince everyone that the old formula no longer has any value. When their marketing campaign is successful, they get doctors on board with money and perks, get guidelines and standards of care changed (maybe with slanted studies?) and we, the patients, can no longer easily and inexpensively access the original effective drug without a huge fight on our hands. Just my opinion.

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Why do they keep stating 'rumours' as that is what they are 'rumours'. Probably started by Big Pharma in order to keep prescribing levothyroxine T4 alone, which many on this forum do not recover. It's not our fault so we need options and most can and do but they may have to 'trial' options to find one that suits them.

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If that was true, why do hyper people come to be treated - surely they should all be feeling fantastic? Over medication does not make you feel good. Feeling "normal" doesn't equal over medication. Having enough energy to get through the day and do a little exercise and have the occasional night out ("normal") doesn't equal "so much energy".

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Being over medicated does not feel good - being actually over medicated. However, the doctor telling me that I am over medicated based on blood tests, when I actually feel good, I am convinced does not put me in danger of heart failure.

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I think we should all go by our instincts, i.e. if we feel well - we are on the right dose. If symptomatic the dose of hormones have to be reconsidered.

We are, after all, dealing with hormone replacements.

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And if the blood test is TSH then it isn't even relevant, let alone put you in danger.

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Being 'overmedicated' doesn't give us energy, it just makes us very unwell with over-active symptoms when we're underactive. So your doctor is only making assumptions. She should listen to her hypo patients and learn from them.

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I had the same discussion but eventually managed to convince her that TSH driven adjustment is not a priority, instead focusing on FT3 (and Ft4) and symptom relief. I am after TT and on t4 t3 combo so really the TSH is irrelevant.

No, I have never heard about cardiovascular damage from regulated, normal streams of thyroid hormones but I have heard about cardio vascular impact of low thyroid hormones.

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Hi Elisabeth

I really sympathise with your predicament, but I would say stick with what makes you feel well.

My own experience of various medication protocols for hypothyroidism has been that on levothyroxine solely I was very ill with myxodoema, chest pains, massive weight gain and depression anxiety attacks etc. I then took my health into my own hands as my gp was obviously completely clueless about how to treat hypo patients in a way which brings them back to health. I have taken ndt and t3 together, pure t3, Levo and t3 and now just ndt. I have never had chest pains on any of the ndt or t3 combos and in fact my health has always been better taking t3, ndt or combinations of those than taking levo on its own.

Sadly, I have yet to meet an endo or gp who understands how to treat with ndt. My own gp, who is a very nice woman, had never heard of ndt or any of the trade names and they generally don’t know about Tsh suppression when using t3.

Stay strong.

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Finola Apologies for coming in so late here, but you mention TSH suppression when using T3. I take only T3 and have evaded routine blood tests many times as my TSH is very suppressed and endo constantly wants to reduce my dose (currently 40mcg a day). This has happened to me all along; including when GP was able to prescribe and my dose was constantly being reduced. So I was up and down like a yo-yo. Do you have any links to Suppressed TSH on T3 please?

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Hi, just saw your question now. Sorry don’t have specific links to hand but suggest you Google tsh suppression on t3 treatment, there is lots of information on the effect from medical research papers to thyroid forums. Dr Isabella wentz talks about on her site, also Recovering with T3 by PaulRobinson is a very useful book for info on all things T3.

Any of the well known thyroid sites will have information on tsh suppression with T3 treatment.

F

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I was told by my NHS Endocrinologist that T4 & T3 do not damage the heart, they do effect pulse rate. I am hypothyroid & have AFib both diagnosed together 17 years ago. T4 therepy did nothing for me. Only now I have heart failure! I believe it was brought on by the T4. I have just started T3 only and I feel so much better but it's early days. T3 was prescribed by my NHS Cardiologist! I have thyroid issues on both sides of my family and I am waiting in DI02 gene test results. I begged for T3 years ago, told them T4 has no effect but they either did not believe me or did not care. I have lived a dreadful 17 years, dragging myself around. The only thing that kept me going were all the blood pressure and heart medication s. Interestingly although hypothyroid my blood pressure was high on diagnosis so was medicated a lot to control it. Was satisfactory, but on T3 for 3 weeks now and my blood pressure has dropped to low! Going to have to knock off some of my other medications. To answer your question I believe inadequate T3 will end up killing you. If my gene tests prove positive there is the proof. Cardiology told me my AFib was brought on because I was hypothyroid, they said once optimally treated it would resolve. But hey Endocrinology didn't listen. They never do! My NHS Endocrinologist told me he cannot prescribe T3, can't wait to see his face on my next appointment in October.

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I’m so sorry you had to suffer all those years Lulu 😢 and thank you for your reply. It is more than logical that low T3 causes heart problems.

Good luck on the T3 - most people, me included, feel like they get their life back. 🌸

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