Help please! Endo wants to stop all medication

Hi

My doctor finally agreed to test T3 as I still feel awful on 200mg levothroxin.

My results are

T3 4.5 (4.2 - 6.5)

T4 15.4 (7.5 - 21.5)

TSH 0.01

She reduced me to 150mg a few months ago and I felt a lot worse and gained nearly a stone. She then referred me to an endocrinologist.

I went along armed with all my symptoms but he didn't even ask me. He just said it dangerous to have low TSH and to stop all medication!? He'll then test me again in 3 months time.

I'm shocked and don't know what to do as I'm worried I'll crash on nothing at all.

Many thanks

23 Replies

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  • Hele1 It would appear that your endo knows diddly squat about hypothyroidism. Personally I would refuse to stop my Levo. There is nothing wrong with a suppressed TSH as long as FT3 says in range. By all means go back in 3 months, but continue to take your Levo, and take the article by past president of The British Thyroid Association and leading endocrinologist Dr Anthony Toft which appeared in Pulse Online Magazine in which he said:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk

    You could very well have a problem with absorption of your Levo and this should be looked into.

    Are your vitamins and minerals at optimal levels ie

    Vit D - 100-150nmol/L

    B12 - very top of range, even 900-1000

    Folate - at least half way through it's range

    Ferritin - minimum of 70, better is half way through it's range

    Do you have any gut problems affecting absorption?

    Are you taking any other medication that might affect absorption?

  • I completely agree. That is totally shocking. I'm on 125mg of levo a day which was wrongly reduced from 150mg / day. I have very occasionally run out and after 3 days feel like death itself. Can barely move, can't think straight, generally feeling Very unwell. You can't just stop that's just crazy ! Please don't do what he says.

  • I'm sorry, I am not an expert, usually an onlooker but even I can see he is insane. My TSH is 0.05 and I feel fine. xx

  • Your t3 too low I felt rubbish at that level!

    Good luck !

  • You do not have to do agree to this, they are not God or the law, they are there to advise you on your health only. Yours sounds like a total sadist looking for guinea pigs. Tell your endoknob that before you agree to any changes in your medication would like to see medical evidence that a low TSH is dangerous. Ask him exactly how your body is going to react to zero thyroid hormone replacement for 3 months and how exactly he is going to manage those symptoms so you can lead a normal life. It's finr for him making these ridiculous decisions when he's not the one living with the fall out.

    I would go back to your gp and tell her to refer you to an endo that actually knows how to treat hypothyroidism without killing people.

  • Same thing happened to me! I carried on for 4 yrs getting repeat prescriptions automatically but not visiting doctor for fear of him saying how come I didn't stop!? I have not been called in for any blood tests and luckily I have not been ill enough to need a docs appointment for anything at all.

    Now trying to obtain my own meds/supplements to self treat as still not right.

    The advice above all sounds good for you.

  • He is wrong. My TSH has been suppressed for over 10 years. My doctor and endo are fine with it. I'm fine. Don't stop your Levo.

  • In PubMed you can find this article:

    'Suppressed TSH levels secondary to thyroxine replacement therapy is not associated with increased risk of osteoporosis'

    It's appalling than an endo can give such a horrible advice. You are not even well treated with a T3 in the low end.

    I think you could benefit from adding some T3 to your levothyroxine

  • rsae56

    The abstract for that paper can be found here :

    ncbi.nlm.nih.gov/pubmed/825...

    The whole paper can be found here :

    sci-hub.cc/10.1111/j.1365-2...

  • I thought we who have been taking Levothyroxine for a long time, depend on it and can't live without it now because our thyroids have ceased to function? My endo increased my dosage of Levo despite suppressed TSH - but I agreed to stop taking T3 (which Dr Toft put me on btw) because it was giving me severe palpitations. This increased dose of Levo has helped me stabilise again. I do have other autoimmunity as well though.

    I think your endo's advice sounds potentially dangerous and I would definitely want a second opinion about this. I've always been told by doctors that substituting a thyroid hormone is for life.

  • Even if we assumed this advice would be okay, you will surely be off work and might need a carer during the three months. It shocks me that doctors don't consider those issues at all.

  • Hele1, you need to ask him the straightforward question as to what evidence there is that a low TSH will do you any harm at all. It is totally irdiculous if he simply says that a lot of others say so, so it must be true. You must insist on being told the full details of the ACTUAL proof of the allegation.

    My TSH, last time checked, was 0.05 (on NDT of course) and nobody told me it was dangerous. I don't think they dared as they knew what sort of an earful of abuse they would have received!

    Be positive, be forceful and they will cave in as they all have no proof of anything they say.

  • He is a complete moron!

    In my humble opinion I would say you are not converting T4 to T3 very well which lots of us don't hence feeling better with T3 added or switching to NDT.

    I haven't looked back since going on to Thyroid S. Cost me under £50 for a months supply.

    Lost weight, not tired, no brain fog once I got levels sorted.

    T4 is the prohormone T3 the active hormone, 5 times more active than T4!

  • My last words to my doctor regarding my thyroid '' doc , throughout my life I have always known when it's time to walk away '' .

  • I have Hashi's and my TSH has to be suppressed to prevent my thyroid making T4. It has been 0.03 for the last 17 years with no ill effects, but no thanks to the endo, it was my Rhuematologist who knew more about this!

  • Dangerous to have a low TSH? May I tell you that I don't produce TSH at all as I have isolated TSH deficiency - maybe you should ask about this? I've taken T3 ONLY for 12 years, it is good for me! I had a TRH test (in hospital for a day only). Maybe you should explore this possibility. When I have my bloods checked there is no TSH which has occasionally caused alarm for a junior doctor until I explain why!! You deserve to be well so keep knocking on their doors until you feel well. Xx

  • I have not had levthyroxine since last August last year. Started on t3 2 weeks ago,blood test after 6 weeks on t3,hope that helps

  • Thanks you all so much for your replies. I really thought if I managed to get referred to an endocrinologist (an expert!) I would be 'cured' or at least given some T3 to try. I still can't believe he wants me to completely stop!! His next appointment is in 11 months time! He gave me a form to get a blood test in 3 months. What a waste of time. I spent years trying to get a referral and I'm back to square one. 😞

  • Depends what he is an expert in. Most of them specialise in diabetes and could point to where a thyroid gland is located.

  • lmfao galathea most of them (endos )...could point to where a thyroid gland is located.

    Yeah but that's about it. And my GP would point at my brain...or my big toe :D

  • my first endo visit was a disaster. Like you i thought finally i will get proper treatment lol she ranted and screamed at me about what an idiot i was for taking ndt, i said as i had no thyroid and no treatment it was the best i had felt for 6 years. She threatened to report me for buying illegal online drugs, then offered me levo if i promise not to take ndt. I was given a SST without my permission, i am extremely reactive to adrenaline and i had to drive home shaking, vomitting and had lost most my sight. I was pulled over by a policeman who drove me home and suggested i sue the dr.

    I went to see my dr as so ill, he had 3 contacts from endo 1. 100 levo 2. double that 3. stop all meds i was not hypo even tho my thyroid was removed.

    I sat in drs office we both had our mouths open, he said he had never encountered such unprofessional behaviour from a consultant. He ignored what she said and referred me to another endo in dept. He was equally useless but tried to force me on HRT.

    I took endo thro complaints process right up to ombudsman. I got full apology, promises of endo and dept would get more training. Signed only consent from then and a formal complaint on endos record. Not that i would ever agree to see someone that crap again.

    A year later i found by recommendation a great endo who altho is anti ndt as he says he knows nothing about it, however he prescribes me T3 and is open to discussion.

    I am an engineer and have to keep up to date with all changes and legislation etc and yet drs can coast by knowing nothing about their chosen profession. It is disgusting that some know less than us and yet continue to get paid and damage peoples health. Maybe we expect to much from them but i do expect them to have a basic understanding of thyroid if calling themselves endocrinologist.

    I have had more help and better info from support groups who understand this illness. I learned a valuable lesson, do my own research and control my health care, with assistance from endo NEVER will i fully trust a dr or consultant again.

    I hope you get the help you need xxxx

  • My TSH is 0.034 & my T4 & T3 are optimised. I take 150mcg Levothyroxine. Empirical evidence indicates that most people using Levothyroxine feel better with a TSH well below 1.0. I also take Vit D 3000mg daily, high strength Vit B Co, Selenium 400mg, a high strength multi-vitamin, Ferrous Sulphate 400mg, hight strength fish oil & Curcumin capsules.. & I'm gluten-free.

  • Thanks uplivity so your TSH is also suppressed. I don't think my endo has seen it with low t3 and t4 before and has got confused?!

    I will look into gluten free and supplements thanks.

    Endomad I am really sorry to hear about you treatment by a 'professional'. I am thinking of going private and will open a new thread asking for endo recommendations near Southampton. I hope you're feeling better now x

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