Hi, I am due to see my Endo this week since lowering my dose of NDT because he wanted my TSH to rise. I know TSH will likely be suppressed on NDT but I would love to know if there are still a number of Endo's/GP's who are 'ok' with it being suppressed and don't bully the patient? I am on NDT, my T4 and T3 have never been over range, yet lowering sent me from feeling wonderfully well to extremely symptomatic (dangerously so as I was coming close to fainting) all because my TSH was suppressed.
I may well now have to go it alone and self medicate/monitor which I am quite resigned to do but wanted to see the bigger picture from other stories. - thank you x
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LittleTom
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Thanks greygoose. I appreciate your response. I realise you might not take NDT yourself but I saw in a few posts that NDT is banned in France ? and also saw a Lady post today reporting it was being banned in Western Canada. Do people still get access to it in France and do you think that this 'ban' could spread to other countries. My apologies if I am asking something you cannot give advice on, it is just with you being in France, thought you might know the situation a little better.
Well, I have been on NDT. I got it in Belgium. And, people have been known to buy it on internet. However, the law on buying prescription medication on internet has now changed in France, so I don't know what they do now. I don't take it anymore, because I didn't do at all well on it.
I have no idea if NDT is likely to become banned in other countries, but if it does, it won't be because it has 'spread' from France. The situation in France is unique...
Thanks greygoose, what a story! I hope people that need it can somehow get hold of it though. Of course not a surprise that they've jumped on the situation and implicated NDT as the blame. Pleased that T3 is at least not the ridiculous price it is here too for people if they can get it prescribed!
One of the endos I see wants my TSH less suppressed than the 0.01 it has been since 2012 and would like it 0.05. Three dose reductions didn't budge TSH but FT4 and FT3 dropped considerably. I refused a further dose reduction and said I would self medicate if she reduced my prescription. I'm hoping I'll have been switched back to the other consultant endo when I have my annual check in May.
Thanks Clutter, helpful to know that. Exactly the same with me, the dose reductions didn't raise TSH much at all but t4 and T3 fell right to the bottom, Slowly getting back up now...whilst seething!!!
My GP has learned to ignore TSH. 15 years on (self medicated) NDT and my TSH is zero, and an 8 week trial of levo only didn't budge it, but I was near dead by then!
We have an ongoing battle with the lab. I remind him that I need FT3 testing, and they ignore his request. So I go back and he asks again, this time more forcefully, pointing out TSH is permanently absent. Eventually they give in.
He's not the best educated GP in the world, but he has stated that he is glad that I, and at least one other of his patients, have found a solution and feel well.
There are a lot of advantages to self-medication in my opinion.
I told my GP I no longer wanted my thyroid to be tested back in 2013, and said I would treat myself. She asked me why I was doing this and I told her that I thought NHS guidelines on the treatment of hypothyroidism were sadistic and inadequate. She looked startled but made no comment. I haven't had a thyroid function test on the NHS since then.
I don't have anyone telling me what to do, or bullying me about my TSH being below range. The only person I have to keep happy is me.
I read a comment very recently (can't remember where) from an endocrinologist. This doctor commented that, when left to their own devices, patients always and without fail over-medicated themselves on thyroid hormones. It didn't seem to cross his mind that perhaps the model of treatment used by endocrinologists might be wrong. It has to be patients who are in the wrong, of course.
Good for you saying that to her Humanbean. Self medicating is becoming ever more desirable for my mental and physical health I think. My endo has made me really worry over the last 6 months of the 2 years I have been to him, What a rollercoaster after finding someone initially very sympathetic, then to feel really life changingly better, after all my years of levo hell, thinking they where behind me, only to be given the TSH lecture and end up being really ill again. I cannot take the anxiety being under an Endo is causing me and my husband. never mind the hour journey, cost. It would be cheaper and much less stressful to go it alone now. What a ridiculous state we are in.
I agree. Most endocrinologists are actually diabetes specialists. Diabetes is a growth industry. It is where the money and the research papers and the kudos are being concentrated.
Thyroid problems, on the other hand, are old-hat, dull, and boring, and mainly affect women who are middle-aged and older (i.e. the non-sexy parts of the population), these unattractive women whinge and whine and moan, and nobody cares about them at all. I'm in my mid-50s and I include myself in this group. If anyone younger or male gets caught up in the hypothyroid group that is just their hard luck.
You want to live a life without pain? The possibility of joy and fun hasn't gone away and you want to grab it while you still draw breath? Being sexy is a state of mind, not of body? Because we value ourselves?
Yup, all those. Trying to convince the average doc that I'm worth the effort is an unproductive effort of my own. Perhaps we should all go into consultations wearing a low-cut L'Oreal t-shirt. Can't remember where I read about research proving that young, attractive women get the best medical treatment. Being young once didn't work for me in that respect. Perhaps I should have had cosmetic surgery and a glamorous wig...
Well I have a 20 year old daughter diagnosed at 15 with type 1 diabetes so I wish they would get a move on and find a cure, and I suppose all the time they are looking into type 2 it might push things on to help the significant minority of autoimmune type 1's, who really have a hard time 24/7. BUT yes you are absolutely right about the female 'certain age wingers' the sharp suited Endo's will just be full of their hormone moaning tales, in their eyes!! I think that is a huge hindrance. I was 27 when I was diagnosed, now 48 and i have been thrown off course for years with, usually male Dr's assuming its all tired mum/busy life/ hormones, gynaecology, IVF etc, when all along I was told as I was on levo my thyroid was fine.
Type 2 is easier to "cure" in the majority of people so off course they will try and cure that first. Though the drug companies won't for obvious reasons as their cash cow will be gone.
I take NDT & my TSH is suppressed 0.05 and has been for years.
I copied the following from ‘Why Doesn’t My Endocrinologist Know All of This?’ Posted By Kent Holtorf M.D. On January 27, 2012 @ 6:11 pm National Academy of Hypothyroidism (bulleted for easier reading!) nahypothyroidism.org ------
In an article published in the New England Journal of Medicine entitled “Clinical Research to Clinical Practice: Lost in Translation” written by Claude Lenfant, M.D., Director of National Heart, Lung and Blood Institute, and it is well supported. He states that there is great concern that doctors continue to rely on what they learned 20 years before and are uninformed about scientific findings.
Sadly, nothing appears to have changed to date.
Quotes:-
1) Dr. Lenfant--- “Enormous amounts of new knowledge are barrelling down the information highway, but they are not arriving at the doorsteps of our patients.”
2) William Shankle, M.D., Professor, University of California, Irvine. --- “Most doctors are practicing 10 to 20 years behind the available medical literature and continue to practice what they learned in medical school….
3) Dean of Stanford University School of Medicine--- in the absence of translational medicine, the delivery of medical care would remain stagnant and uninformed by the tremendous progress taking place in science and medicine”.
4) Sidney Smith, M.D., former president of the American Heart Association, published in 2003 in the Wall Street Journal entitled Too Many Patients Never Reap the Benefits of Great Research Dr. Smith is very critical of physicians for not seeking out available information and applying that information to their patients, arguing that doctors feel the best medicine is what they’ve been doing and thinking for years.
5) A review published in The Annals of Internal Medicine found that there is clearly a problem of physicians not seeking to advance their knowledge by reviewing the current literature, believing proper care is what they learned in medical school or residency and not basing their treatments on the most current research. The review found that the longer a physician is in practice, the more inappropriate and substandard the care-------
6) National Institute of Medicine reports that there is an unacceptable lag between the discovery of new treatment modalities and their acceptance into routine care: “The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”
Thanks Ellismay, interesting to read that. The overwhelming theme, in the absence of anything they can show, from the ranks seems to be 'there is no evidence that it works' - hardly an argument for it being dangerous is it ? The arrogance of just repeating that over and over, regarding T3 and NDT is overwhelming.
Personally my endo and I agree to disagree! I use the 'broken record' method if he even suggests lowering my meds! I will NOT be dominated! I want a full physical examination as well as blood tests.
What does the TSH have to drop to before it is officially recognised as suppressed? Is it just any figure below the reference range or less than 0.1 or something else?
So my update is that my Endo has rather reluctantly agreed (whilst telling me all the woes about Afib), that for me to feel well I may need my TSH to be suppressed - ...Hallelujah!!! ...although relieved, it has taken for me to feel very poorly again after 2 years of feeling great on NDT (and 18 pretty crappy Levo years) to see my T4 and T3 levels drop right back on the floor due to dose reduction, for this to finally be accepted and my dose raised. He was asked - Was it better for me to have all my dreadful symptoms and a have non suppressed TSH? - he agreed it wasn't but I had to know the risks..at the same time he also added, he has never had any patients with A fib in a lot of years! I think i will prefer to have my life back on that basis..here's hoping whilst i raise my dose and hope all the stress doesn't get in the way of that. Very frustratingly he also said he is not now allowed to prescribe to new patients as NDT has been red flagged. (Anyone else hearing this?)
I have learnt that I will never EVER agree to my dose being lowered if I have any doubts..."out of my cold dead hands"...is that the expression?? No wonder people just walk away and go it on their own. I can count myself lucky for now but I wouldn't hesitate to if needs must.
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If anyone younger or male gets caught up in the hypothyroid group that is just their hard luck.
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