Graves turned hypo

Anyone else going through this?

I’m getting replacement therapy

Carbimazole and T3

Anyone else experience this?

[greygoose]

How was your Grave's diagnosed? Did they test antibodies? If so, which ones?

[Hidden in reply to greygoose]

Yes Grey Goose I had TRab taken last year and confirmed Graves

[Hidden in reply to Hidden]

My recent results

[Hidden in reply to Hidden]

Whoops do I have to start a new post to post a photograph?

[humanbean in reply to Hidden]

No. You can Edit the original post in this thread, or just type your results and reference ranges in to it.

To Edit a post, click on "More v" then click on Edit. Make the changes you want then remember to Post/Submit or whatever the word is.

You can only add pictures to the first post in the thread, but you can amend the text in any post or reply.

[greygoose in reply to Hidden]

OK, so if you've now 'gone hypo' you're probably on too high a dose of carbi.

[Hidden in reply to greygoose]

I’m on 2.5 mg per day

Would it be dangerous to come off now that I’m hypo as anti bodies may have increased?

[greygoose in reply to Hidden]

I'm afraid I don't know all that much about Grave's, I have Hashi's. But, I think you need to come off carbi very slowly.

What I don't understand is why your endo is giving you T3 as well as carbi. I know about block and replace, but that is usually levo and carbi. Is it because you don't convert very well?

I wouldn't have said you were euthyroid, your levels are still a little higher than those a euthyroid person would have. But, if he thinks you're euthyroid, why is he still giving you carbi? It doesn't make much sense to me. I'll like to know his reasoning.

Why do you think your antibodies have increased?

[Hidden in reply to greygoose]

I thought I’d read somewhere that if you go from over active to underactive it increases antibodies

[greygoose in reply to Hidden]

I've never heard that. And, logically, it can't be so, because it's the high antibodies that made you hyper in the first place.

[Hidden in reply to greygoose]

I couldn’t tolerate T4 😢

[greygoose in reply to Hidden]

OK. Not everybody can. But, that still doesn't explain his treatment plan. I think you need to have a serious conversation with him and find out where this is going.

[Fruitandnutcase in reply to greygoose]

Doesn’t make sense to me either. It doesn’t sound like the sort of block and replace I had.

Carbimazole or T3 - I don’t understand why you would be taking either / both if you are euthyroid. Are you in the U.K.?

My block and replace involved a large daily amount of carbimazole- 40 mcg, plus an ever increasing amount of levothyroxine- I started on 25mcg and ended up taking 100/125 mcg alternating before I stopped everything a year later.

As T3 is so difficult to get hold of I can’t think how you have managed to get it - unless you are not in the U.K. I couldn’t even get my T3 checked by the NHS. Hence I now do my own blood tests with private companies.

To begin with I was taking 20mcg carbimazole a day - did that for four weeks and it didn’t make any difference so my endo (hadn’t seen her) wrote to me telling me t get more from my GP and double my dose.

By the time I got to see her I was quite hypo.

I’ve never heard that becoming hypo increases your thyroid antibodies. I don’t think mine increased. I did reduce mine when I went totally gluten free after I developed inflammatory arthritis a couple of years after I went int remission from Graves. It could have been a coincidence or it could have been with being gluten free. I haven’t gone back to eating gluten though.

I wouldn’t mess with carbimazole. I would want an endocrinologist to deal with that after having had blood tests.

[Hidden in reply to greygoose]

Endo thinks I’m euthyroid?

Must be some reason why he’s not reducing carbi?

I’ve uploaded my results at top of post now

[Fruitandnutcase in reply to Hidden]

I can see him keeping you on a small dose of carbimazole although not if your are euthyroid.

I think people being treated by titration can stay in quite low doses of carbimazole for a long time although I’m not sure how long or how low but I don’t understand adding T3 as well as carbimazole but then as I’m not medically or otherwise qualified so I’m not any sort of expert - it just seems a bit unusual or maybe it just seems unusual as I’m in the UK and T3 isn’t easy for patients to come by. Hopefully your endo will enlighten you soon.

[MissGrace]

Hi Jackrussell1. I’m not much help for your request, but I wondered where those ‘optimal’ ranges came from. I would think optimal ranges were when you feel well and are pretty symptom-free so are individual. A bit like TSH - I don’t want anyone defining my optimum by numbers as that seems like a trap to me. 🤸🏿‍♀️🥛