In the 4 or 5 years I’ve had a very low TSH reading but despite a few docs worrying that I’m overtreated,
and this could lead to heart problems and osteoporosis, a couple of docs have agreed symptoms more important and so have largely remained on 125mcg Levo. Every time I reduced my dosage hypo symptoms returned.
With access to my online results I discovered my TSH had been suppressed for 15 years so I asked my doctor if I could see an endocrinologist, even if it took a long time to get an appointment, so I could put this issue to bed for once and for all!
I was therefore surprised to receive an appointment for the 28th May!!
Any suggestions for what questions I should ask would be very welcome. I may start by asking if s/he has heard of Dr Toft??
Also I will tell them that my daughter and therefore I presume myself, carries the gene that is associated with poor conversion of T4.
Anything else? Preferably brief!
My dealings with endo consultants 40 years ago ended up with me being badly hypo because of arrogant doctor not listening and thinking I didn’t need a blood test - and took a good while to recover. Oh and then there were the early years of being dismissed as the usual neurotic, tired, weight worrying woman before being diagnosed ...don’t get me started!
I don’t want to miss anything in this what will probably be a brief consultancy!
Thanks
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Catseyes235
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My experience of an endo and suppressed TSH culminated in him making me extremely unwell and I had to give up working in my own business and be looked after for 2 years.
I was referred to an endo because my GP didn't know how to help me, I had suppressed TSH and almost top of range FT4 with half way through range FT3 and I wasn't well (sounds familiar?!)
Endo freaked at the suppressed TSH and wanted it in range. Cue reducing Levo.
4 months later the endo had achieved his goal and my results were
TSH: 0.4 (0.27-4.20) - yay! in range!
FT4: 15.6 (11.8-24.6) - reduced from 93% to 30%
FT3: 2.8 (2.8-7.1) - reduced from 55% to 0.00%
Oh boy was the endo happy! Guess how I felt? My GP agreed when I said I was binning him off and never going back to him again, she immediately increased my Levo.
Since then I've discovered how to look after my own thyroid.
My TSH has been suppressed since at least 1997, I don't have osteoporosis nor atrial fibrilation.
Oh dear you mean nothings changed after 40 years? Surprise surprise! Well I’m prepared for that and got at least 2 doctors on my side! I’ll not take advice on reducing T4 but will keep this site updated.
Absolutely not! Sorry but your standard response to my and almost every question is not what I need after 50 years of dealing with thyroid. If I’d received your advice at the beginning I’d have been totally overwhelmed. .Too much too soon. Sorry.
Your journey bears all the hallmarks of those of many members here.
Never too late to learn, especially when you have freely available to you the amazing knowledge of experienced members here. Few medics have such comprehensive knowledge....as you indicate you have discovered over 40 years.
Dosing by TSH is courting trouble you need a full thyroid test as SlowDragon and others here advise.
My TSH is suppressed as is my FT4, I have neither osteoporosis nor artial fibrillation....a recent heart scan showed a perfectly normal heart. You will find there are many naysayers in the endo community.
FT3 is the important thyroid result, T3 being the active thyroid hormone.
To establish poor conversion you need both FT4 and FT3.....high FT4 with low FT3 = poor conversion.
In that circumstance adding a little T3 might help.
I write as someone who needs a high dose of T3 due to thyroid hormone resistance...so been there!
Many of us have the Dio2 polymorphism, it's impact, research proves, is limited unless inherited from both parents/ homozygous. . Endos often discount any significant impact.
My Dio2 is homozygous
The responses you have had are exactly what you need and your blunt dismissive response is unfortunate. Members give up much of their time to try and help and don't expect thanks. However appreciation is usually what returns!
Were it not for similar support, and personal research, I would now, in all probability be close to death. With that information I was able to discover that I have a rare thyroid problem ( a form of Thyroid Hormone Resistance) that I've had all my life...I'm now 75 and very grateful for what you refer to as " standard responses". I'm doing OK now...after 50+ years, thanks to this forum
Dr Toft is a highly respected and renowned endo, using his name to ( possibly) gain leverage with an endo, or to check his credentials is unlikely to help your case. Your endo will just be interested in you.
You asked for brief responses....sorry, but nothing about recovery from thyroid disease is brief or quick. It takes time, patience, determination, an open mind, much reading and an appreciation of other's experiences.
Having said all that I know very well how difficult it is to feel unwell and to feel you are knocking your head against a brick wall! I self medicate, my GP now understands why. Is your GP sympathetic?
I hope you have a successful consultation, we will look forward to your update given that you say, "I don’t really have any problems, that is the problem! " Perhaps you need to have another look at the report from the Medicheck's doctor to check why he suggested you may need T3.
Not everyone can afford repeated Medichecks blood tests and certainly not all the blood tests suggested. Sending out a cut and paste standard response is not always answering/seeing the individual and is sometimes inappropriate when someone has a simple question.
Most people with any interest in thyroxine will have heard of Dr Toft.
I do not have any problems except certain doctors reactions to my TSH results. Thanks
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
20% Patients with no thyroid can not regain full health on just Levothyroxine
Thanks for the articles which I’ll try and get printed out. Medichecks in 2019 showed FT3:RT3 bit low and that’s what I find interesting as had a mini stroke last year due to Cholesterol despite good diet. Anyway I’ll report back findings.
Dr Toft was physician to the Queen when she's in Scotland. I he's now retired.
Dr Toft was a Consultant Physician with an interest in Endocrinology, and especially thyroid disease, at the Royal Infirmary of Edinburgh from 1978 until he retired from the NHS in 2009. He has been President of the Royal College of Physicians of Edinburgh, President of the British Thyroid Association and between 1996 and 2009, Physician to Her Majesty the Queen in Scotland. He retired from private practice in March 2019.
He has published widely in the most prestigious medical journals and textbooks on the clinical management of patients with thyroid disease.
His book ‘Understanding Thyroid Disorders’, written for patients and published by the British Medical Association, has sold over 250 thousand copies.
He was appointed CBE for services to Medicine in 1995 and LVO in 2009.
His clinical interests are:
Endocrinology
General medicine
Parathyroid disease
Pituitary disease
Thyroid disease
He has considerable experience in all aspects of endocrinology, his major contributions to the literature lie in the field of thyroid disease (hyperthyroidism, hypothyroidism, goitre, thyroid nodules and thyroid cancer).
He is particularly interested in identifying those patients with hypothyroidism who might benefit from treatment with both Levothyroxine (T4) and Liothyronine (T3) (Triiodothyronine), rather than with the usual treatment of Levothyroxine alone.
In December 2017 he wrote a powerful article published in The Journal of the Royal College of Physicians Edinburgh entitled 'Thyroid hormone replacement - a counterblast to guidelines'.
Dr Toft is now enjoying his retirement from medicine and particularly his garden. We will be eternally grateful for all his support and friendship.
i suppose the right questions to ask will rather depend on what you hope to get from the consultation. If it is to trial adding T3 to Levo, then unless you happen to get seen by one of the few Endo's who is willing, i suspect it won't matter what you ask, the answer will still be 'don't go there'
if you do want to try adding T3 then having blood results with you to show poor conversion would be a helpful start,
ie ft4 top end of range , TSH low but in range, with fT3 still very low in range or below range. (but this still won't make any difference if they are fundamentally opposed to the idea or have been warned off prescribing it due to cost by their CCG )
Apart from access to T3 trials , all they seem to do from frequent reports on here is :-
a) suggest the issue is overmedication and all your troubles are to do with below range TSH and suggest reduction ,and even worse write to your GP confirming this.
or b) if you're very lucky , allow you to continue on current dose and write to GP to say that's OK despite lower TSH.
or c) if your TSH is in range, tell you your thyroid is fine now and the remaining problems are 'something else'
Sorry to be so depressing... when i first came here i was thinking i'd like to see an Endo for the first time ever . but i 'm now of the opinion there's not much point unless you want to try and get a T3 prescription. And if you want T3 there's still not much point unless you already know there is some chance that that Endo is at least prepared to prescribe it to some people.
ThyroidUK do have a list of NHS /Private Endo's who have been known to prescribe T3 trials, so it might be worth considering whether it's worth the risk of seeing the one you've been referred to , or whether to wait and try and get referred to one of your choice.
I don’t really have any problems, that is the problem! According to TSH I should be very hyper ..I’m not. Medichecks a couple of years ago said I might benefit from the addition of T3. Curious as to what they say. As I said to my doc I just want it put on my notes instead of this yearly cry of alarm from different doctors! Hope your well..
well, maybe according to the TSH for an 'untreated' person you should be hyper.... but the act of taking thyroid replacement hormone alters the relationship between TSH fT4 and ft3 , giving relatively higher fT4 and lower fT3 than are seen in healthy untreated people, and often giving lower TSH relative to both. So 'low TSH in treatment' does not indicate hyperthyroid in the same way as it would when not on treatment .
( I'm sure you know that, but just adding it in case others reading later don't)
Yes .. it's a pain having the constant argument i agree ..( my GP told me "but you'll die" )
I understand wanting to stop the yearly 'flap' from GP's.... i just hope it doesn't backfire on you.
And i still see many 'Endo' posts on here where even a previous 'note of permission' from the Endo does nothing to stop a new GP from flapping... i think the safest route to be 'left alone' is to train one GP to your preference re. risk /benefit of your preferred dose.... (and hope he doesn't move surgery)
I have told my doctor he’s not allowed to retire. I sometimes think of moving but I’m quite lucky with facilities round here not least for AMD injections. My main doc is the one that also has worked miracles with acupuncture on me. However I’ve found one of the younger women in the practice on my side too. You’d think with thyroid issues so rife, every practice should have a specialist. I was amazed how looking through my notes there is an obsession with smoking and drinking and absolutely nowt about diet.
I'd been on t4 for some time taken off because of absorbtion issues, my blood work was awful, the new endo put me on T3, I've been slowly increasing it from 10mg to 35mg, before my TSH was very high at 19.32 in Dec 2020 yikes... The T3 has now brought my TSH to 0.1..range in UK.. 0.30...4.50..mU/L...when my bloods were done and my gp saw the TSH at 0.1 he flipped and told the endo who said I'm over medicated, but I was not, I did feel OK.... Although I have been diagnosed with primary hyperparathyroidism and I know these symptoms, diagnosed before in 2004....if I never had the symptoms of primary hyperparathyroidism I'm sure I'd feel OK.... Then gp tried to take me off the T3, I'm still fighting them, I've gone to my pharmacy this last 3 times to get the meds T3 lactose free) and this is the 3rd time they have not been available, I feel its just a Roose to get me off T3, but I'm not giving up, I recokon my TSH is OK at 0.1...but everyone is different, don't be surprised if they don't try to lower you thyroid meds... 🙄
Thanks for reply. Haha they won’t get me to lower my meds ...been there before and got the t-shirt and several jumpers, bed socks etc to keep warm! If anything I’ll push the genetic link but otherwise if it ain’t broke. Just interested to hear their take!
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