Advice regarding fessing up to endo about T3

Hi all. I took the plunge and sourced some t3. All feeling good and some indication of weight reduction so looking promising. I've got an endo apt in September and I intend to go for bloods in advance by which point I will have been on t3 for about 5 weeks. Do I tell the endo? Do you think they would be willing to monitor me? I'm hoping that as long as I'm not over medicated (no signs so far) that they would acknowledge the t3 is helping. Or am I being naive?

16 Replies

  • Why tell the endo? Do not take meds within 12 hours of appointment for blood tests as the results will be skewed.

  • Glynisrose, its best to be hinest and upfront, the endo can do nothing about you taking t3 if you want to. In the UK it has now been decided to withdraw the ability to prescribe t3 and make people rely on t4 only. We need people like twarrior who are taking t3 to be the advocates in showing endos how much better they are with this included. In the hopes that it might be brought to the attention of the medical council so they will re think their decision to withdraw t3.

  • It's likely your tsh will be suppressed so endo will probably notice and try to change ur t4. What dose are you on for both? Make a list of the symptoms you feel have gone or are improved and tell him straight, check your pulse for artrial fibrillation so he can't chuck that one at you and go in and say this is what I've done this is why I've done it this is the outcome and I'd prefer you to prescribe and monitor me but if you won't so be it. If he comes out with crap like you'll have a heart problem or bone problem ask him to source the research and that ultimately you choose quality of life over vague rumours of heart problems. Be calm, be prepared to be scorned but prepare your counter arguments and if endo rude or dissimissive tell him/ her so and that you don't appreciate it. Doctors aren't used to being calmly challenged and bullies often back down because not used to it. At the end of the day what have you got to lose? Why waste energy seeing an endo if they don't know what's going on, it's pointless, if you tell it like it is you have a chance of being prescribed t3 and if not at least you have been straight and they know the score. It worked for me. All depends on how organised you are, assertive and your endo. Go prepared though, write everything down. Take a witness.

  • I agree that telling him/her is worth it both for you as they will hopefully monitor and also I think we have to challenge the medical profession on the 'levo is the only med for hypo and you're remaining symptoms require more drug's mantra. Thyroid UK etc are doing it at at national level but I think we can help those begin diagnosed in the future one GP and endo at a time.

    My GP (who is one of the good ones) had never heard of ndt or any problems with levo only. I got a private prescription for ndt and when my GP saw me 3 months later he said 'i can see you're much better just by the way that you came into my office'. We then had a long chat about Dio2, conversion issues and the need for some thyroid patients to have t3/ndt as well as/instead of levo only.

    He said maybe this could help a couple of my other patients that aren't doing that well on levo so hopefully it gets passes on.

    The endos are always going to write the guidelines. If we can influence them to seeing that there is a minority (about 12.5 per cent) that need an alternative to levo maybe they will start to rebel against the levo only guidelines....

    Yours as self appointed leader of the rebel alliance


  • T3Warrior,

    I'd been self-medicating T3 in addition to Levothyroxine for 6 months in between consultations when I told my endo. He commented on the improvement in my health and at the same time told me there was a lack of EBM to prove the benefits of T3+T4. We had rather a heated debate about it, something I would have be incapable of 6 months earlier when I was very unwell. I didn't ask, but he wrote a prescription for T3. I think the overwhelming improvement in my health and his reluctance for me to buy T3 on the internet may have both been why.

  • I would be as honest with your endo as you would want them to be with you. Where is the point in hiding something that could affect the way you are treated? Its not as though you are doing anything illegal is it and it needs to be noted on your medical records, along with any vitamin or mineral suppliments you are taking just incase of emergencies or problems.

    We have to remember that endos and gps are supposed to be working with us and you may well help change this one endos mindset by showing him the improvements you have noticed on t3. I hope you continue to improve :-)

  • Some Endos are willing to prescribe some T3 but now the guidelines might have changed. He may, however, be willing to monitor you.

    I'm glad you're feeling much better.

  • A link for information and is self-explanatory. Maybe Endo might like a copy :) :

  • Hi, I would recommend being honest and as others suggest being prepared with facts to fight your case. Fight you may well have to depending upon your endo.

    We recently went to endo for my hubby Bob to ask them to re-prescribe T3 after taking him off it and they kept 'going around the houses' asking the same questions over and over with me providing them with answers from my notes rather from NHS info. I challenged them on quite a few points. They weren't really listening.

    I showed them the Dr Lowe critique which was dismissed as 'some people will always disagree'. They tried to say Bob's deterioration in health should be investigated by GP to find a cause. I said scientifically if the only change that has been made is in his medication (coming off T3) then the greatest likelihood is it's coming off T3 that has affected his health - they wouldn't accept it.

    They could not accept that his rapid weight increase being back on T4 was more of a concern regarding potential heart, BP and diabetes issues than being on T3.

    They kept twittering about worrying about T3 causing peaks and troughs in blood - so what? This happens naturally in the body and homeostasis balances. Bob's T3 was at the higher end of normal when blood test taken just after he'd taken a T3 dose and at the lower end of normal if he was due a T3 dose. Can't see what's wrong with that! I then asked point blank if they were refusing to re-prescribe T3 and they said 'yes'. At that point I said we might as well leave. Bob was warned about self-medicating and I just couldn't be bothered to say that if that returns him to health that's what he'll do. I wish you more success.

    Bob was the only patient in Grampian region on T3 and only got it after I 'bullied' our previous GP into prescribing it. She could then see it improved his health but she has now left the surgery and another GP referred Bob to endo because he was on T3.

  • Hi all. Thanks for your comments. I plan to have my bloods done in a week or so, leaving 12 hours or so after Last t3 dose. Is that enough? I was previously on 150 / 175 mcg levo on alternate days. I am now taking 50mcg levo and 3 doses of t3 morning, early afternoon then early evening. Each dose is half a 25mcg tablet of t3 so 37.5mcg in total. I wear a Fitbit. My resting heart rate has increased from an average of 69 to 76 over the period, but surely that is to be expected? Whilst my bowel movements have felt slightly more urgent they are not loose. I don't have hand shaking and there is no effect on sleep and no hair loss.

  • Earlier this year I asked my GP if I could trial T3 in addition to my Levo.

    She said T3 is dangerous. I was too ill to even discuss it any further at that particular appointment.

    With the wonderful help from this forum I have successfully done just that. (added T3)

    Last week I let my GP know and she offered to check my bloods every 3 months.

    She said that she appreciated my honesty. I am well chuffed as she commented that she can see an improvement in me.

    J 👍

  • Amazing that T3 is useless but dangerous! You do not have to be 'honest' your endo won't.

  • Hi Glynisrose,

    Are you replying to me or wispers60?


  • Both.

  • Ah grand Glynisrose,

    It's just that I wasn't speaking about an Endo,

    J 👍

  • I think it is bad enough that we are forced to find our own solution from questionable sources because of the medical profession's neglect. I won't have them force me into lying as well.

    Relatively few consultants will be difficult. They may genuinely believe that we are harming ourselves, but most will be fair enough if we are clearly feeling better. The worst that can happen is that he refuses to help/monitor/test, in which case you are really no worse off than before (and feel a whole heap better!).

    In reality most will be at a loss as to how to help patients who fail to respond to what is supposed to be the only valid cure. And if they truly believe that the research shows no-one needs T3 (from lio- or NDT) then of course they will be very sceptical of our apparent cure. But that isn't really an excuse not to provide care and support. They wouldn't refuse to treat a smoker for cancer, after all.

    I think many more GPs (and there are many more of them, of course) will be upset and difficult. They are, in general, less bright, less curious than consultants. And they feel very much more besieged by the medical inquisition, and very much more vulnerable to malpractice complaints.

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