No thyroid meds

[limasog]

Had Endo appt a couple weeks ago and he wanted to remove his support due to me taking NDT and T3. He has been monitoring me for many years and the last 4 years while I was taking NDT but now that I've introduced the T3 he's very uncomfortable with it. We came to a compromise and agreed that I would stop taking all my thyroid meds for 6 weeks, or as long as I am able to up to 6 weeks, and have bloods done every 2 weeks. He's agreed to discuss introducing T3 to T4 on prescription after the 6 weeks. I'm a bit apprehensive now as been taking one form or another of thyroid meds since my PT 26 years ago. I've now been off thyroid meds for 9 days and starting to feel some of the worse symptoms again. I'm especially concerned as I'm very teary and feel really down. Has anyone else stopped their thyroid meds for a while although their thyroid isn't producing much T4 at all? What else can I expect?

[shaws Administrator]

I think it is very foolhardy of an Endocrinologist dealing with life-giving hormones tells a patient to stop for six weeks. I certainly couldn't and I think those with T3 could maybe stop for about 2 days max without awful effects.

I would phone him and say you can continue with this experiment no longer as you cannot survive without NDT or T3. (I assume NDT isn't working so well if you cannot convert the T4 within it to T3?)

[limasog in reply to shaws]

NDT worked well for me for more than 3 years but then my symptoms returned and worsened when I increased NDT as I had high RT3. I have managed to flush out the excess RT3 with T3 but am also dealing with some gut issues that are hindering my progress.

[Judithdalston]

So for years you've been under him , and last 4 years he has given you NDT, but you have recently boosted this with extra T3 privately? Now he is tacking his NDT away ( tempted to say 'or he won't play). Very odd to stop everything for 6 weeks after so long, other than no 'foreign' T4/T3 in your system, what is he aiming to achieve other than a very unwell patient? He seems a control freak! I'd throw in the towel after 2 weeks and do blood test, and revert back to his NDT at least.

[limasog in reply to Judithdalston]

I was purchasing the NDT myself as he won’t prescribe it but was willing to monitor me on it. His concern, due to lack of knowledge, is that he fears I was taking too much T3 in both meds.

[greygoose in reply to limasog]

Is he incapable of doing/understanding labs? If your FT3 is in-range, there's no problem. If it's slightly out of range, no problem. If it's well over-range, then he should be investigating hormone resistance if you still feel ill.

The man is totally insane! You cannot treat hypo patients like that. Would he do that to a diabetic? He's probably a diabetic specialist, so ask him the question. It's the same thing.

Why don't you tell this megalomaniac madman to sling his hook, and self-treat. You're already buying your own hormone. Why do you need him to stick his crazy oar in? If he doesn't manage to kill you, he's going to make you very ill. There is no scientific or medical reason for what he's doing, he's just playing with you in a fit of pique!

[limasog in reply to greygoose]

Greygoose he does understand the lab results and knows exactly what can happen hence the warning he gave me to contact him immediately if I started feeling really unwell. He didn’t say it in so many words but with my results he want to have a reason to prescribe T3. It’s getting more and more difficult in the UK to get a T3 prescription but with little to no T4 production he will have a case to make an exception. Btw he’s a pituitary specialist and although not as knowledgeable as I would like he’s still more than most

[greygoose in reply to limasog]

So, what are your results? You haven't given any details. How much NDT are you taking? There's only 9 mcg T3 in one grain. That's miniscule. How much T3 have you added in?

So, what he's trying to do is get all the exogenous hormone out of your system so that he can see how much T4 your thyroid produces? That's a very dangerous game to play. Couldn't he have looked at your old results to see what they were when you were diagnosed?

I think he's exaggerating, though. Just because you take a little extra T3 for a while, and your FT3 goes over-range, you're not going to drop down dead on the spot. I think he's just trying to scare you out of taking it, because he's feeling out of his depth. T3 is not dangerous.

[limasog in reply to greygoose]

I had a PT 26 years ago due to a multi nodular goitre and was on levo for 22 years. My FT4 results were always at the top of my range or above and FT3 mid range. I have no older results showing either low T4 production or conversion issues. March this year I was on T3 only, self medicating, and my FT4 result was 7.8(11-23) which has now lead my Endo to finally realise the existing part of my thyroid, which has multi nodules, does not produce much T4 at all. His issue isn’t actually the T3 but the NDT as he has no knowledge in that area.

[greygoose in reply to limasog]

But if you were on T3 only, of course your FT4 was low. That does not show how much your thyroid is producing. Your thyroid would be cutting back on T4 production because you're taking T3. But, it must be producing something, because otherwise it would be zero. Like mine.

NDT is just T4 with a little T3. There's not much to know about it.

[Hidden in reply to greygoose]

Love the writing visuals.😊

[Hidden in reply to limasog]

So he won't provide the meds you need but is willing to monitor you (I assume he is getting paid.) If you are smart enough to get yourself on the right meds and to flush your rT3 you are smart enough to monitor yourself and find a way to get the meds you need without this guy.

[greygoose in reply to Hidden]

Well, rT3 doesn't take much 'flushing'.

[Angel_of_the_North in reply to limasog]

If you are purchasing meds yourself, why do you need the endo? You can get bloods done by GP or privately and keep on buying your own meds. Play the control freak at his own game. Don't even imagine that he'll feel guilty if you end up in A&E through not taking your meds.

[Hidden]

Is it possible to stay on your meds, continue to feel good and find a new doctor? Why does he get his own suffering guinea pig? And if the situation were reversed would he feel miserable six weeks plus for you? I've been teary and down from hypo and I would never allow anyone to demand this of me under the guise of helping me or better yet covering his professional ass. If it were me I would rethink this one. I know you are in a hard spot. It isn't fair how we are often treated but this breaks new ground and makes me angry at him and sad for you. Take care. irina

[limasog]

Irina1975 I've been researching my condition for at least 15 years and consider myself more knowledgeable on the issue than most doctors, and I've been sourcing NDT and T3 for some years. I understand what you're saying but I need to try this to see for myself how damaged my thyroid really is. My Endo is NHS so I don't pay for his time. I would expect much more from a private Endo.

[Hidden in reply to limasog]

I understand and happy it's your decision to find out info and not him pushing for his own ends. Take care. irina

[Angel_of_the_North in reply to limasog]

I would just refuse to do it and continue as before.

[silverfox7]

I wouldn't feel confident with someone not familiar with how to read results from someone taking T3 in any form. How can he be objective when he doesn't realise FT4 will drop etc.