Advise on Endo stopping T3 andgetting NDT

I recieved a call from my private Endo Sec on Friday late afternoon that based on latest blood tests to stop taking T3. Anyone else had experience like this? Why wld he react so dramatically . I was told not to worry and in shock so didnt adk questions!!

Have been on for 5 weeks and seeiing slow but significant improvement. Had TT 13 years ago and past year unable to walk far with pains, chronic fatigue and brain fog so bad cant drive.

She cldnt tell me why. Only seeing him 16 th May. I will call and make sure get results from her tomorrow vis email but cant contact over weekend.

I didnt take t3 yesterday and feel dreadful today, couldnt sleep for pain in legs, headache and fatigue so bad cant get out of bed. Levo had been reduced 5 weeks ago when started t3 so without it chronically hypo an will get worse.

I thought this wld be the answer and start to get my life back.

Would you pls PM me how to get hold of NDT cos combinationnit working so wld like to give this a go !

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19 Replies

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  • In answer to the question have I heard of this, yes have often heard of GPs and Endos making crazy knee jerk decisions to take people off their hormone replacement.

    What I have never heard of is any good reason to do it. It may be that your blood tests have come back too high (or he thinks they are too high). But it still makes no sense, as you could just reduce slowly in a sensible way.

    I don't think you should put yourself through the pain of it. And if you're paying him probably sack him, as this is evidence he doesn't know what he's doing, and also doesn't care about your well-being.

  • I've turned into a bolshy old moo! I wouldn't stop T3 until you see him (you're already feeling worse!), it's only a week or so until your appointment, then discuss why and get your full results. If your FT3 is in range, there is no need to do anything, if it's over range then a reduction is the answer, not to stop it altogether.

  • If you are in the UK the guidelines have changed and the Powers that Be have told doctors not to prescribe T3 any more but they did have a clause and I'll look for it and put below in that it could be still prescribed for 'clinical need'.

    It may be that's why your Endocrinologist is stopping prescribing so that he follows the 'new' rules.

    healthunlocked.com/thyroidu...

    Phone the secretary and ask for your blood test results with the ranges, and post on a new question for comments. You just cannot stop taking T3 without some substitue. She could have told you to reduce dose but complete withdrawal isn't good for the patient.

    Also if they say your T3 is 'too high' say that is expected because the blood tests were introduced along with levothyroxine alone. So if we add any other hormones, i.e. NDT or the addition of some T3 or T3 only, the bloods wont correspond.

    Even reducing T3 slightly is better than complete withdrawl.

  • This is very useful for GP visit on Tuesday! He has refused to even discuss T3 and I bypassed by going to a private Endo. I am so unwell but need to get on record he is refusing me T3 on NHS! Also to ask so what treatment does he recommend given I have done what they said, reduced Levo and still ill! Even with T3! Is there no way to try NDT on NHS given it was the treatment a generation ago?

  • They've been brainwashed and told rumours, i.e. heart or bone problems. There is less likelihood if taking NDT,I think (and am not medicaly qualified) as it contains all of the hormones a healthy gland would produce, i.e. T3, T4,T2, T1 and calcitonin.

  • Make sure that you take notes during appointment. I have a note book that I always use and insist on writing down what they say. With a foggy head I have my questions and expected good/bad answers written down so that I have some control if I can't think straight. This also slows down the consultation so it is not as easy for them to deal with you super fast (using a wheelchair helps as the spaces are obviously small so just the manoeuvring takes ages).

  • Personally I would not be prepared to stop taking the T3 if you feel OK, until you have your results and have had a proper conversation with the endo. But my understanding is that you do not feel OK.

    I took a look at your results from 2 months ago when you were over medicated on levo and still complaining of symptoms. My personal opinion is that there is a non thyroid problem here, and no amount of thyroid hormone of whatever type will cure something unrelated.

    It puts you in a very difficult position, of course, because if its not thyroid, or anything else that they recognise, then they will start pinning nice vague, untestable stuff on you like CFS/FMS IBS etc. Its a cop out, and not one to take lying down!

  • Thanks Ruthi all your advise helps me trust myself more! . I agree and I am seeing my GP on Tuesday to say the same thing! My whole system has calmed down reducing Levo and have more energy and less brain fog on T3 but why is high cortisol and Calcium still happening? I will get latest results from Endo tomorrow and post. I have already had IBS diagnosis following endoscopy when was low stomach acid now gone with proper treatment discovered on here TPA and other thyroid sites!

    You are all giving me the courage to be more stubborn and keep going. Took T3 this morning and leg pains down from 7 pain to 4! But have never fully gone with T3.

  • When you speak to GPs or Endo you need tp say it exactly as you have done above.

    Fluffy answers like i am tired, i am in pain are easily dismissed.

    You need to quantify, eg pre hypo I used to enjoy 5 mile dog walks, post diagnosis I can barely get off the sofa. I used to be fine on 8 hours sleep then was waking up tired after 10 on levo but now on T3 it has improved and 9 is ok or whatever examples suit yiur situation

    Write down every symptom you have or had and give it scores and take it with you. if you havent got it there is a comprehensive symptom list on TUK, you may have some you didnt realise were connected.

    I dont know how long you have been diagnosed but if you can remember do pre diagnosis, diagnosis, on just levo,on T3, levo/T3 combo or whatever you have tried and give them scores. That way you can give definitive 'this symptom improved on this treatment or this one got worse on that treatment' like you did with your leg pain scoring. If it clearly shows certain symptoms only respond to T3 highlight them and give GP/Endo a copy to be attached to your file, they have to take note and act on that sort of thing and cant deny knowing or treat you like you are 'just a neurotic woman'. It will also identify any that have not changed or only worsened which may not be thyroid related at all as suggested by Ruthi.

    Definitely phone and get your results before the appointment so you can get advice and find the right amunition to fight with ahead of time.

    Good luck

  • Thanks great idea. I have the tuk leaflet which will make it easy and will rank on that! I have the one I did for Endo meeting 5 weeks ago to maximise private fee!! i can do one from 6 weeks ago and one now! Good for both GP and Endo. I will get full print out of results tomorrow at GP to prepare for Endo next week

    This really helps me feel more in control and that my voice is heard! .

  • Hi What kind of leg pains are you experiencing?

  • It started last June as what the Drs said was Planta Faciitis in bottom or both feet and heel. Came on suddenly when on holiday in US. Cldnt walk very intense burning pain. We were in middle of an International move and there for a wedding so krpt going . When got to UK GP again said PF and nothing they cld do, didnt even examine me said wld go in about a year. So paid for 2 different private physios. Stretches they gave me did help a little but burning, stabbing pain spread to knees and hips. I can walk but feels like knives stabbing in joints and along muscles and tendons. Gets worse if I rest ie put feet up on sofa or in bed. Painkillers dont help a lot, just take edge off and dont want to be on continually. I am 52 but virtually housebound. It has reduced now I am on T3 but not gone away- more like a 4 when previously 7-8 . I also get in elbows during night and cry out in pain.

  • Plantar facilitis is a symptom of hypo. Maybe an increase in T3 will help.

    web.archive.org/web/2010112...

    Some people have Thyroid Hormone Resistance in which they only get better with T3 only.

  • Thanks Shaw! I do think it is all related but where can I find a Dr as knowledgable as Dr Lowe?

  • Sounds awful.

    Have you had any antibiotics etc. Some meds can cause these types of pains of plantar faciitis and also peripheral neuropathy.

    Did you have any meds prescribed for you whilst in the USA? Fluoroquiniolones can cause these signs and symptoms. They have a black box warning about the side effects of tenosynovitis, tendonitis, muscle damage. Sorry to say but people need to know in order to avoid these antibiotics which are recognised by the medical profession including the NHS to be toxic.

    If you google fluorquinolone toxicity syndrome you will see what I mean.

    I am very sorry that you are going through this.

    Take care and good luck at the drs tomorrow.

    xxx

  • Thanks I did post but not shown yet. YES this deterioration all started with a chronic ear infection ended up in AnE in Middle East where I lived at the time. They tried a couple of antibiotics and saw 3 Drs and no idea which ones but will take a look !

  • You mention plantar fasciitis. I had this (self-diagnosed). And before the full blown can't-walk-and-feet-on-fire problem that helped me to identify it I had years and years and years of what I just thought were weak feet, sore feet, could never stand for any length of time, it's my fault because I weigh too much, I can never find comfortable shoes problems.

    The problem went away when I optimised my basic nutrients - iron, ferritin, vitamin B12, folate, vitamin D, and I got my Free T3 levels up. I never spoke to a doctor about my sore feet problems, it simply wouldn't have occurred to me. On the basis that the problem wasn't visible and the pain was worst first thing in the morning and would have diminished by the time I got to a doctor's appointment, I think I would have just assumed I would get brushed off, as seems to have happened to you.

  • Humanbean /sarahpk

    Have u sen a podiatris tabout the sore feetc?

  • Exactly! Had so many other symptoms noone knew what to do with didnt ever mention pain when walked until got unbearable and cant walk. have been on all these supplements now for 6 weeks, keffir the lot, recent blood test is all levels good to high but many now over range- calcium, folate and ferritin. And still in a lot of pain. My friend who is coming to Drs with me is severally disabled by stroke and said she thinks is harder for me cos cant see the suffering! I do think it is years of medical neglect has lead to such severe defficiencies its almost like my body is not absorbing basic nutrients and hormones, it gets into my blood but not my cells! Thanks for sharing and thankful it got sorted for u. How long taking supplements until symptoms went away!

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