My endo has stopped listening... I feel desperate .

In my last post I explained that I had started taking T3 and that the results were amazing. I said I was nervous to tell my endo but I have now done so. When I saw him in April I had been taking 12.5 of T3 FOR two months along with 75mcg of thyroxine. My results were..

TSH <0.01 (0.35-5.00)

FREE T4 14.4 (9.0-21.0)

Total T3 2.2 (0.9-2.5)

I felt fantastic although probably a little hyper.

He was very concerned I was sourcing my T3 from Greece and decided to give me a private prescription. He also said he was concerned the my TSH was undetectable and to reduce my T4 to 50mcg and my T3 to 10mcg. I told him I was feeling very well and didn't want to reduce but he insisted. 10 weeks later my results were.

TSH 0.02. T4 10.8 AND TOTAL T3 1.6.

I felt cold exhausted breathless and gained 3 kilos. He insisted I stay the same and said my symptoms were not because of my treatment. And to leave the medication the same for another 10 weeks. I have done so but have been exhausted and so breathless

I had my bloods done Thursday last week and the results are ..

TSH 0.03 . T4 10.9 and T3 1.5 very little change.

He is still insisting that these results are fine although he would prefer my TSH higher. I told him I feel terrible my eyes and face are puffy I am exhausted and so breathless I have closed my Guesthouse because I just can't cope. My mind is totally confused and I can't concentrate.

He wants me to have my bloods done in three months. I can't stay like this for the next three months. Is he right to be so concerned about a low TSH? He said because my thyroid had grown back he is worried about a thyroid storm. With these results it doesn't look like my own thyroid is producing any thyroxine. But of course I am very worried.

PLEASE can someone advise me....

Thank you ..

76 Replies

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  • It is really up to you what you do as it is your body NOT your endos, but you know when you felt well and what doses you were taking.

  • The very first thing an Endocrinologist or doctor should ask the patient 'how are you'. If patient says not very well he should look into the reason why. Not adjust meds up/down/up/down to keep TSH 'in range'.

    No, he isn't right about a suppressed TSH. They tell us we will get heart problems or osteo but thyroid cancer patients have to have a suppressed TSH.

    healthunlocked.com/thyroidu...

    I would go it alone and you probably will feel much better rather than being restricted in your dose(s). I am not medically qualified but I have got well by 'going in alone' with the help of TUK before the forum began.

    Endocrinologists have to following the guidelines, whether right or wrong. For instance many doctors and Endos are withdrawing t3 but the BTA guidelines state that if we have a clinical need it should not be withdrawn, so no wonder we don't know if we're coming or going.

    So many members in the past few weeks are desperate because their T3 has been withdrawn.

  • Could he be right about a thyroid storm. If I don't follow his advice he will probable withdraw my T3 but I shall just buy it myself if he does.

    Thanks you

  • Why do they frighten us into submission? Why tell untruths and I've just read the following:

    webmd.com/women/tc/thyroid-...

    If we take a little too much thyroid hormones, we will not feel so good with fast heartbeat and feel not very well. So we miss a couple of doses until system settles down and return to previous dose.

    I had forever palps on levo with plenty of visits to A&E. On T3, I've had none - cardiologist doesn't need to put 'something' in heart to record what was going on as he was suggesting and I feel well and haven't been in an ambulance since nor the A&E..

  • I very much doubt it. You'd need very over range FT3 for that. And Ft3 wasn't tested - it's the only imporant test if you are taking T3

  • Well your FT3 was in range when you were taking 75mcg of LT4 and 12.5 of LT3 so why did he think you were overmedicated? T3 is the active hormone and you haven't got too much of it, so presumably you're not overmedicated?

    In fact your FT4 was in range too so neither was over range. TSH is bound to be low if you take T3 I would have thought but TSH is a pituitary hormone so not relevant to how much thyroid hormone you have. Just an indicator of how active the pituitary glad is. It doesn't need to spring into action if you are adequately replaced so bound to be low. Maybe the admins can explain better?

  • Thank you. There seems to be so much conflicting info on TSH. I did speak to my GP and he said the old school of though was a low TSH causes heart problems and osteoporosis but it's a risk I am willing to take.

  • Low TSh was not differentiated from hyperthyroidism with low TSH and very high Ft4 and Ft3. It's the over range thyroid hormons that cause problems. TSH has little to do with heart and bones (the only relationship is is that in healthy people it regulates the amount of T4 and T3)

  • He's talking rubbish! He was just put out that you decided to take your health into your own hands and buy T3. So, he had to interfere and be seen to take charge of your treatment again - no matter what the effect on you! He doesn't care how you feel and he knows nothing about thyroid. Why on earth would he conclude that your thyroid had regrown from those labs?!? He's just a control freak and an egotistical monster and I cannot imagine why you are playing his game and smoothing his ego at the expense of your health.

    If you've been reading on here for any length of time, you must know that once you are on thyroid hormone of any kind, the TSH becomes irrelevant unless it goes high. And that if you are taking T3 your TSH is going to be suppressed. And it doesn't matter. The pituitary is no-longer producing TSH because you no-longer need it. Surely, surely you've read that on here many, many times. No?

    Tell your stupid endo to take a hike and go back to your original dose where you feel well. He cannot force you to do anything you don't want to. And, if he had your best interests at heart, he wouldn't try to. You're better off without this awful man. He can't even do the right tests! The Total T3 give you little useful information. He should be doing the FT3. So he has no idea what your actual levels are, and is just looking at the useless TSH. Get rid of him and find someone who knows what he's talking about! :(

  • So glad you are in good form today gg .... 😊😊

  • Oh, it just makes me so mad! How can these people live with themselves? This man is totally ruining his patients life, and getting paid a big fat wage for it! It is totally immoral. In no other profession could you get away with being so totally bad at your job without being called to account...

    OK, I'll stop now. lol

  • Please don't 😊

  • lol

  • Second the motion PLEASE DON"T greygoose .We need more voices like yours to fight this battle till all medical academia learns how to TRUST us and TREAT us OPTIMALLY.

  • Thank you.

  • YOUR MOST WELCOME !!!

  • Totally agree with you greygoose! They like their power, control over patients, and a fat salary! That's why the NHS is in such a bad financial state... too many highly paid and useless consultants ... and patients keep coming back because the so-called specialists are unable to do their job as they should! It makes me seriously angry too.... and I do rant a lot...

  • :)

  • Thanks grey goose. I mentioned before I had respitory failure on a plane to France just over 18 months ago. It was 24 minutes of CPR to get me back. I was over medicated on 200mcg of thyroxine and had been feeling quite ill. My T4 was 22 just out of range but my GP said it was fine. and my TSH was <0.01.

    It was the French drs that were very concerned about the TSH and said they thought my thyroid had grown back and to get a ultra sound when I returned to the uk. My thyroid has indeed grown back and my GP was quite shocked. My endo Dr Toft said it is rare but can happen . He was so supportive at first but would not prescribe T3 or NDT. He constantly talks about my thyroid producing thyroxine and if I am over medicated that could kill me. Possible why he want to keep my levels so low. He was very put out I sourced my own T3 and prescribed German T3 at a massive cost.

    Can you tell me the difference between total T3 and FT3 To be honest I get confused sometimes with some of the info on here and my mind is so fogged it makes me feel useless... but of course I have learnt so much I don't how I would have coped without this site,

    Thank you

  • Your thyroid may have grown back a bit, but it can't be producing any hormone. And, if it suddenly started to make hormone, you would notice something had changed, surely. How much has it grown back? Is it full size? Why did you have an TT in the first place?

    Thyroxine won't kill you. It doesn't do anything. It has to be converted to T3. And, you obviously don't convert very well, or you wouldn't need to take T3. T3 won't kill you instantly, either. If you have regular testing - the right tests, of course - it would be picked up on long before it got to that point. Being over-range on T3 for a short while is not a problem. It's long term that causes problems.

    There are three types of T3 : Free T3; Bound T3 and rT3. So, there are three types of tests : rT3, measures rT3; Free T3 measures Free T3; and Total T3 which measures Free T3 AND Bound T3 together. But doesn't tell you how much of each. The only type of T3 the body can use, is Free T3. So, that's what you need to measure. Your TT3 could be over-range, but your FT3 could be really low.

    As for the incident on the plane, is there any proof that your slightly over-range T4 was to blame? What about your FT3? Did nobody test for that? I find it hard to believe that over-range T4 would cause respiratory failure - very over-range T3, maybe - but not T4. And, if your dose of levo was 200 mcg, it was that causing your T4 to be over-range, not your thyroid growing back. That is a high dose. This sounds all highly suspect to me. But, one thing you have to know about French doctors is that, unlike UK doctors, for whom nothing is to do with your thyroid, for French doctors, everything is to do with your thyroid! If they know you have a thyroid problem, well, that's it, then! Search no more!

  • It is full grown. I had subtotal removal at 22. I was never told I had graves it was Dr Toft who did the anti bodie test and diagnosed me at 55 years old... if I had known I had Graves I would have understood why I alaways felt so ill and been much kinder to myself.

    God knows what happened on the plane . I have passed out two more times since I get so breathless it's unreal. We have oxygen and a nebuliser at home and as soon as I pass out my husband uses both and I have only been admitted to hospital once . They say it's asthma but I don't wheeze and one Dr said it wasn't. Does graves cause breathlessness and light headed ness. My blood pressure is always quite low so I put it down to that...I have a hectic lifestyle and am very driven. I drive myself to exhaustion at times. Although I am selling my Guesthouse nest year and will move into a bungalow and start taking it easy.

    Thanks for all the replies I would have just give up if I hadn't found this site. Thank you all x

  • I don't know a lot about Grave's, but I don't think breathlessness and light-headedness - someone please correct me if I'm wrong. But, they are hypo symptoms.

    What a pity you didn't get copies of your blood tests right from the beginning. And still a pity that you aren't getting print-outs of your results, now. If antibodies were done, you want to know which ones.

    However, even though you had a thyroidectomy, if it was Grave's, you will still have the antibodies. So, I would advise you to get them tested even now. But, seems to me, if it was Graves, and your thyroid has regrown, then you would be hyper again. Which you aren't. Well, that's my theory, anyway, and I'm sticking to it!

    You could very well have asthma. I've been diagnosed with asthma several times by doctors that actually do the tests - and other doctors who don't do the tests, have said, no, I don't have it - but, assuming I do, then I have learnt that having asthma doesn't mean you're coughing and wheezing all the time. It comes and goes. It affected me most when I was pregnant - three times! But, I can have an attack any time, anywhere, out of the blue. Lot's of things can cause permanent breathlessness, like low T3, low ferritin, and other nutritional deficiencies. But, these occasional attacks, I'm pretty sure, are asthma.

    Low blood pressure is hypo. Did you have low blood pressure even at the time you were diagnosed with Grave's? Because I'm pretty certain Grave's doesn't cause low blood pressure.

  • I think you are right and it is asthma . My blood pressure has been low for about a year I never had a checked before then. I am going to get full works on my bloods and will contact blue horizon.

    Thanks for your input x

  • You're welcome. :)

    Did you see, I did answer your question about the difference between FT3 and TT3? I saw you posted a new question about it.

  • Yes I did thank you. I am printing it off so I can read it and get in in my fogged brain lol

  • I am hypo and also have asthma. I resisted the diagnosis for a long time but recently things became much worse and I had several serious chest infections so asked for specialist referral. A respiratory consultant did spirometry and confirmed I have it. So now thanks to him and the asthma nurse, I have an asthma plan, emergency antibiotics and steroids I can take without waiting to see my GP as I go down very quickly.

  • Do you suddenlyJust get out of breath and faint. I was chatting to my husbandwas very happy and animated on Sunday evening and I just suddenlycouldn't breath then I was semi conscious for about 25 minutes. We have oxygen and a nubuliser. It's very weird because I just feel like it's for a few minutes and I just can't get my breath and feel lightheaded. It's only when I recover and my husbandtells me the details of how long it lasted that I realise how bad it is. We live a hour from the nearest hospital so my husbandhas a pact that if I don't recover in 20 mins he will call a ambulance. On Sunday night he was about to do so as he said my lips were blue. Then I seem to recover and normallythe next day I have a terrible headache and am beyond exhausted. This has only happened three times since I had respitoryfailure in France just over a year ago. The Dr is very dismissive and says its asthma. I just don't understand it. I have so little faith in my dr I don't even mention it. AlthoughSunday night was a bit worse so I think I will mention it again. I asked Dr T if it was thyroid related and he said no.

    I laugh it off and say it's a funny turn that old lady get, althoughI am 55 and I am starting to worry what it is...

  • Tanya-B

    I have never experienced what you describe. It must be very worrying both for you and your husband. This should be thoroughly investigated. Keep pressing your doctor as this isn't my experience of asthma.

  • Actually GG, French doctors are more concerned with the liver, if I remenber rightly.... was never aware they were overconcerned with the thyroid...

    In any case, best to be overconcerned than not caring a fig as they do in UK, until you drop dead... then they are so very sorry... etc.... Not a sigle UK doctor would have even suggested the thyroid might have regrown!

    It would be fantastic to find a doctor who would actually care and understand about hypothyroidism and how very nasty Levothyroxine is...

  • I've never had a French doctor mention my liver. But when I had sepsis, all they could talk about was how my thyroid was affecting my heart!!! Yes, they gave me antibiotics, but that was just as an aside.

    Levo isn't nasty. Lots of people do very well on it. I didn't, but that doesn't mean nobody does. :)

  • German T3 is much cheaper than British and you can probably use your prescrition to buy it online for less than the pharmacy charge. Dr Toft said himself that some patients need over range FT4 and suppressed TSH in order to feel well - and that's Ok as long T3 is in range - perhaps you need to show him his own Pulse article.

  • so long is FT3 as in range I think??

  • you'd need to check the article - perhaps he meant total.

  • Could be, I don't have the article.

  • Get it from louise.roberts@thyroiduk.org.uk

  • I think I will show it to him if I go back. I have lost confidence in him so don't think I will.

  • It was Dr Toft who put me on T3 when he was at Edinburgh Royal Infirmary.

  • He wouldn't give it to me or NDT. I think he was put out I got it myself. He told me he hadn't prescribed incase my own thyroid starts producing and I get Thyroid storm. He said it's his biggest concern .. he is prescribing the German one now and says I have to have blood test every three months. My GP does this so it doesn't cost me.

    They keep saying I am a unusual case. Not sure what to think to be honest.

  • I am going to quote that to Dr Toft.

    Thank you

  • He said I was an unusual case too!! Wasn't prepared to increase my T3 from 20mcg so am still hypo.

  • Was it Dr T you were seeing? Maybe 'you are a unusual case' is the new buzz word to make us doubt what we are reading and trying to empower ourselves?

    I said to my GP 'all I want is a quality of life because life is so short' he looked taken aback 😲 bizarre .

  • It was Dr Toft. Some years ago now.

  • greygoose You are brilliant!🌺

  • :D

  • greygoose as always you say it as is .... I would run and not walk . This is a Dr that puts lab results over how patient feels is not an Endo/Dr that anyone ought to be treated by . When will Endo/Dr's learn it's more ART THEN SCIENCE ..... Symptoms and how patient feels rules over lab results . Symptoms are cellular results labs are serum results that fluctuates all the time .

  • Just realised greygoose is right, your Endo has done Total T3 according to your post, not FT3. Total T3 is irrelevant. Endo should have checked FT3. Thanks greygoose for noticing that. I think your Endo does not know what he is doing.

  • He doesn't have a clue!

  • I think I need private testing and shall look into that. Can you tell me the difference between total T3 and FT3 please. This endo has a OBE and treated the queen......

  • God save the queen, then! That's all I can say.

  • Brilliant I am howling xx

  • So a Gin Martini or two then GG - dead on 5pm - no later :-)

  • Gin and tonic, pur-lease! I don't do these fancy drinks. :)

  • ... thought it was the queens tipple - hence the train of thought 😴

  • It was the Queen Mothers poison Marz. 👍

  • Ah thank you !

  • I have no idea what the queen drinks! She doesn't drink in my local.

  • Apparently you can get gin and tonic ice lollies at Aldi - just sayin'

  • Not Aldi, France, you can't. Otherwise, I'd have a freezerful! :(

  • YOUR THE GREATEST GOOSE I EVER MET .!!!!!!!

  • lol

    You're a bit of a comedian, yourself, jgeliss!

  • I LEARN FROM THE VERY BEST ONLY !!!!!

  • lol

  • Can I just say graygoose and Marz you had me in fits of laughter with the queen comments yesterday. I woke up in the night thinking god save the queen and was in fits of laughter.

    Thanks for cheering me up. I have a wicked sense of humour and your comments were hilarious xx

  • Glad you liked them. :) Next time our double act - Goosie and Marz - is appearing in cabaret, I send you an invite! lol

  • Please do lol

  • I would LOVE to be there too . COUNT ME IN !!!!

  • lol

  • It's only the Free's that are metabolically active according to this website

    mayomedicallaboratories.com...

  • In regards to your last line - we all know the names of some nasty people who had honours given to them.

    If he's any good he doesn't need to boast about it or promote himself using it.

  • That means he is part of the establishment!

  • FT3 is the free T3 which is not bound to proteins. T3 is the total amount

    of T3 which is being used.

  • I'd reinstate your previous dose which made you feel well and your results look decent. Do you need the endo? Sounds like he just wants the money for the private prescription and doesn't actually understand how T3 works

  • I have done as from today, thank you all x

  • Hi Tanya - Take a look at wholemum.com you will find information

    on how the thyroid gland works. Advice recommends that you find a sympathetic doctor or endo

    who will prescribe dessicated thyroid preparation not synthroid or levo.

    It's knowing what questions to ask your GP or endocrinologist. As another contributor has mentioned that if you need T3 as a clinical necessity then you should be prescribed it.

    As your first test results were within normal range according to another contributor then

    why was your T3 removed? He seems to have put you in a hypothyroid state.

    I would try another doctor in the practise to see if you can be referred to another endo for a second opinion. Failing that I would go to the local Pharmacy that will give you a free diabetic test.

    They will test you and if you explain your symptoms they will help you be referred to the right

    person. LLoyds do a free test in some of their branches. It won't matter if you are not diabetic

    it will rule out another reason why you are feeling awful.

  • Thank you so much I will do all of the above. He has def made my hypo thyroid I feel terrible. I have upped my T3 and T4 back to my original dose and will post how I am in a couple of weeks.

    Thanks to everyone who replied . I feel better physiologicaly at least .

  • wholenewmum ! sorry got the address wrong.

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