Please, What shall I do in this case!? Thanks.

[Santos82]

Hi all.

I am really worried about my doctor’s recommendation.

I was diagnosed with graves disease in February 2019.

I have been taking Thyrozol 10mg for sometime, one pill per day. When i started i used to take 3 pills for the first 3 months only.

The TSH level is now 6. Please check my result history in the attached snapshot.

The doctor is saying that the TSH works in the front head and not on thyroid. She also says that we should only track the T3 & T4 and they should be within range. She is happy that TraB is declining since there will be a great chance for remission very soon.l, probably after 4 or 5 months.

I told her that i feel depressed and tired. I get angry easily and i think it is because i am hypo, due to my tsh result. I suggested to decrease the dose from 10 to 5mg. The endo insists im not hypo and that we need to focus on t3 & t4 and that if i take lower dose of Thyrozol then my Trab will not decline further in the same progress and there would be a greater risk not stay in remission.

What do you think?

[greygoose]

The doctor is saying that the TSH works in the front head and not on thyroid.

Either your doctor is a bit confused, or you misunderstood what she said.

TSH is a pituitary hormone, and the pituitary is located in the brain, behind your nose. TSH is secreted when the pituitary senses that there's not enough thyroid hormone in the blood, and it stimulates the thyroid to make more hormone. So,

Are you sure she didn't say that the TSH is not a thyroid hormone (which it isn't, but it's made at the front of the head, although doesn't work on it) and that you should concentrate more on FT4 and FT3 because they are the actual thyroid hormones? I know endos can be pretty ignorant, but I've never heard of one that ignorant.

However, if she's concentrating on the thyroid hormones, she should realise that the FT3 is much too low, and the FT4 is well below mid-range, and that's why your TSH is so high. You are hypo.

But, I can't advise you on what you should be taking - although I would have thought your dose too high with those labs - because I don't have Grave's, and don't know that much about it.

[humanbean]

Can't you just cut your Thyrozol into halves and take half a tablet per day? Or even three quarters of a tablet?

People can buy pill cutters, although I never had much luck with them myself. When I need to cut pills I use a hobby knife or Stanley knife. They can be bought on Amazon, and many of them are cheap and come with spare blades. If this interests you don't get one with odd-shaped blades.

Something like these?

amazon.co.uk/Blue-Spot-Soft...

amazon.co.uk/Amtech-AM-S049...

But avoid something like this with the peculiar shaped blades :

amazon.co.uk/Draper-31073-M...

[HLAB35]

Your pattern of blood results look suspiciously like a Hashi's flare rather than Graves (or at least a shift from Graves to Hashi's - see link below) .. your t4 and t3 dropped dramatically in one month on the meds.... ONE month..... that's pretty quick. Any possibility that the antibody results were flawed somehow? Have you had Hashi's antibodies tested as well? A block and replace strategy with Levo, is, what I believe to be standard practice, so not sure why this has not happened with you yet. It may be worth getting a full panel done privately as the short term expense could prove worthwhile to your long term recovery.... you'll need to check vitamin levels anyway. Good luck getting answers.

Link that explains a shift from Graves to Hashi's in some people..

ncbi.nlm.nih.gov/m/pubmed/2...

[purple64 in reply to HLAB35]

Hi I have graves and I don't think I have ever been tested for hashi as well. Maybe it's something you have to request as the test has always been for graves antibodies 🤔

[HLAB35 in reply to purple64]

You probably do have to request it, because a lot of Endo's are diabetes experts and don't know the complexities of autoimmune thyroid illnesses.

[purple64 in reply to HLAB35]

That's very true. A lot of them don't seem to know a lot about autoimmune thyroid and with graves they just say that you need RAI or surgery 🙄

[Hidden in reply to HLAB35]

Thank you, that really explains a lot. I wondered exactly how someone could have both Graves and Hashis

[purple64]

I would try 5mg for a while and see if you feel any better. I was on 30mg in the beginning then gradually reduced. I have now been on this dose for about a year I think.

[asiatic]

I have Graves . I went hypo very quickly on ATM. It is quite common. The solution for me was block and replace. 10mg Carbimazole has an immunomodulatory effect and the 50mcg levo gives my thyroid a rest. This works well for me and I feel ok now.

[Hidden]

"The endo insists im not hypo and that we need to focus on t3 & t4 "

I had to read your post several times because I couldn't believe that your endo was so ignorant! The only thing she has right is that it's good to focus on the T3 and T4. Then she shows she hasn't got a clue even about the optimal levels of those either! The high TSH simply adds further evidence that you have hypo symptoms and need to reduce your meds.

Even without the TSH measurements (much too high now) it is obvious that your T3 and T4 quickly went down from very high to well under the top of their ranges, and that you were likely to start having hypo symptoms!

How a supposed expert can be so appallingly ignorant I can't imagine!

Like greygoose I don't know much about graves either, but...

[greygoose in reply to Hidden]

I would imagine she's more of a diabetes 'expert', and just has a passing knowledge of thyroid. There aren't that many thyroid experts around.