Endo wants to remove all drugs to see how sick I get

Just seen my endo and now sat in car in despair. When I was diagnosed I had a TSH of 37 and t4 below 5. I am now on 75T4 and 20T3. TSH is 0.02. T4 below range and T3 just in range with still hypo symptoms. He has said that he because of my TSH he wants to remove all t4 / T3 and re diagnose me. Ie: he wants me to get very sick and start again. I told him that was cruel. Has anyone ever heard of this before? Just feel totally destroyed by this.

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  • Yes, your endo is about to subject you to cruel and unusual punishment. But you don't have to agree to it, do you? With your original levels so low, and your current levels on medication STILL low, you'd think he'd raise your T4. Don't know if you've seen this graphic before, but it shows why patients are in a constant fight with doctors. They don't understand the feedback loop. tiredthyroid.com/blog/2014/...

  • Wow, this is shocking. No wonder you are so upset.

    You're a patient needing specialist care and treatment but being used as a lab rat in his own twisted experiment. He sounds like a very dangerous man.

    Has he acfually refused further treatment if you don't agree to it. Can you get your gp to refer you to a different endo.

    Good luck and take care. Xx

  • I wonder if your endo approves of the idea of :

    1) removing insulin from a diabetic (Mr A, I want to see how high your blood sugar gets without insulin, just for my entertainment you know),

    2) epilepsy medication (Mrs B, I want to know how long you go without a fit. If it is over a week, that's not bad so you don't really need the medication do you?)

    3) high blood pressure medication (Mr X, lets see how high your BP really is, shall we? If you have a stroke we'll know you need it.)

    Your endo is a sadist. It might take a few days for your TSH to go sky high or it might take weeks, or it might never go as high as it was previously. But since your TSH doesn't determine how well you feel, it is a pointless exercise that will just damage you. Refuse to do what he says, write a letter of complaint about him and refuse to see him again.

    I think the problem is that endos have been taught that hypothyroidism is a trivial illness that can be treated with a little white pill. And it affects mainly women. Do the medical profession trust women to be reliable reporters of their own symptoms? No they don't. So he's asking you to do something he probably feels is a minor inconvenience. He's a sadistic prat. Refuse to do what he asks, and find someone else. Or self-medicate.

    Incidentally, you asked if anyone had heard of this before... I'm sure I read it was a fairly common practice in France. But that is a country which has banned NDT, so the endocrinology profession is even more stupid there than it is in the UK, which sounds impossible, but apparently it isn't.

  • Ummm no... It's not common practice in France. I've only ever heard of it being done in England.

    And, out of all fairness, I have to point out that it wasn't the endocrinology profession that banned NDT, it was the governement - they'd ban all hormones if they could - they've also banned HGH and aren't too keen on DHEA or meletonin - because they Don't know anything about them, and they're terrified of them.

    But it's nothing to do with endos, they have no say in the matter. :)

  • It was ages ago I read about a French endo doing the same thing. But I could easily have got the details wrong, thanks to hypo memory. :)

    I feel sorry for people who need hormones and can't get them even on the internet. :(

  • Well, they can get them on the internet - except for HGH, but that's complicated. I bought various brands of NDT on the net for years. Now I buy my T3 that way - not because I was refused it - my doctor was happy to prescribe it - but I want to control my own dose, and it's easier to buy it myself.

    There may have been one French endo that did it somewhere - but maybe the circustances were different! But in all my years on French forums, I never heard of anyone having that done to them. Not saying that French endos are brilliant - they're a mixed bunch like anywhere else - but they're no worse than UK endos - and perhaps sometimes a little bit better... :)

  • I agree that he thinks it is nothing. My husband was appalled st his seeming lack of compassion and indifference to how unwell it would make me.

  • How awful. This sounds like a terrible idea. Re-diagnosing you with what?? I wonder if this endo will take full responsibility for being the one potentially making you so sick again! If it were me I think I'd absolutely refuse and book myself in to see my GP and ask for an urgent referral to another endocrinologist at a different hospital for a second opinion before agreeing to anything. Good luck xxx

  • Maybe he thinks she will have a miraculous recovery that will prove his point i.e. - we don't really need replacement hormones.

  • That's exactly what he thinks!

  • I have heard of this.. A manager in my work place was put through this cruel practice.. She was starved of medication as she put it!

  • Another idiot - it would appear. They have no idea how to treat a patient and you might well be better off without someone who is going to do an experiment i.e. to see how really ill you become by withdrawing your thyroid hormones altogether. He is obviously completely unaware what a strain that would put on your heart and other organs.

    First your TSH is fine - second your T4 will be lower as you've added T3 into the mix and T3 is just 'in range' (I assume it's not 'top of the range'. He should have added some extra T3, I think, to see if it relieves your symptoms (that's the purpose of replacing thyroid hormones). Some of us need a very low or suppressed TSH. Also you may be better on T3 only. Who knows? We only know when we are allowed to try some variations to see if we benefit.

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • This is a link and you are welcome to send him a copy, plus the survey (over 100+ pages) to see how many patients are dissatisfied with their treatment and want changes.

    thyroiduk.org.uk/tuk/campai...

  • Sounds an awful treatment plan! Have you thought of finding another ( more patient friendly) endo? Louise at ThyroidUK has a list of them and there might be someone on there that you could go to.

  • I feel so bad for you. You really don;t need this test while Christmas organising will be coming up. In fact if you were going to go along with it, at least wait until after Christmas to feel bad.

    Im doing something similar myself because of some strange results and Dr Peatfield is in hospital so I can't get to the bottom of it. Feel dreadful and so tempted to carry on as I was before.

    However, you don;t need to do this at the moment because its just a test and in effect it could wait until later. In the meantime, Im not an expert but I guess he wants you to do this and then kick start what your hormones are doing by removing everything and then putting the brakes on so to speak.

    If it were me diagnosing I think Id cut back on some of the T4 and add some more T3 to give a bit of a rev up of whats happening. The T4 figure is low because the T3 is replacing its levels. He should know that as an endocrinologist.

  • Don't do it! Ask for a second opinion.

    I allowed myself to be persuaded to stop my NDT and still haven't fully recovered 18 months later.

  • Queridalady, several members have reported their endos taking this course, usually because the endo didn't believe they were ever hypo despite results going back years sometimes and demonstrating they were. Complying means weeks becoming ill, and weeks/months recovering as thyroid levels are replaced and optimised.

    Low FT4 and low FT3 mean you are undermedicated and I think initially it would be helpful to increase Levothyroxine, and later, if necessary, T3. Suppressed TSH is irrelevant because FT4 and FT3 are low, and it's these which make you symptomatic, not low TSH.

    It might be an idea to get a second opinion from another endo if you're thinking of complying. Personally, I'd ditch the endo, self-medicate to get FT4 and FT3 up and, if you're still symptomatic in 6 months, ask louise.warvill@thyroiduk.org.uk for the list of member recommended endos.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Having faced poor advice and a dismissive attitude from one of my GPs I know how devastating it can be when feeling so ill and not really heard, understood or helped.

    At that time, I had some expectation that the medical profession knew best and that they would be knowledgeable and willing to help me be well. My own experience and what I hear other people on this forum have found is that we can't always trust our GPs and consultants and that we need to learn about our illness and be prepared to challenge, or decide to consult someone more sympathetic and knowledgeable.

    Many of the previous responses suggest that you are probably under-medicated. I think a very good, persuasive, yet measured argument about thyroid diagnosis and treatment has been put forward by Thyroid UK in their Open letter here:

    thyroiduk.org.uk/tuk/About_...

    Perhaps this will help you to at least have more confidence in your own sense of what is right/wrong for you. Also, if you do a search there is plenty of information about the TSH not being the right measure for 'wellness' in hypothyroidism.

    Good luck whatever you decide.

  • It is your health not his, I woud not put up with this if I were you. I have heard of this before but it never gets any better. DO NOT under any circumstances allow your doctor to reduce your meds based on blood tests alone.

  • Find a new endo - fast! This one wants to kill you or at least make you permanently disabled.

  • Hi don't you think the saying comes from you have to be cruel to be kind"there's truth in this, i would go with it, at least he shows interest in your thyroid unlike some doctors

  • Under no circumstances agree to this, querilady, the man's a moron. He has no idea what he's doing - and that's why he's suggesting this because he knows he has no idea what he's doing, or how to make you well, but he wants to be seen to be doing something.

    Just say NO! I would probably say something stronger if it were me, but that's just me. lol No, it's a truly stupid idea with nothing to recommend it. He's not going to find out anything new by doing that. It has been well established that you need your replacement hormone. So, if he will no-longer agree to provide it due to you refusing his mad-man scheme, just ask your doctor, or do it yourself. You'd probably make a better job of it than any doctor, anyway!

    Take care. :)

  • Do you have Hashimotos?

  • I don't believe so. I have had antibodies tested many times and always negative

  • I just remembered that my doctor suggested we do this, since the Levo and t3, didn't help me. She wanted me to build back up my TSH, which stays at 0.003 and start over from there..so yes, it happens in the US too.

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