Hyperthyroidism Support Group

Hi:

Okay, are you going for your labs of the Free T3, Free T4, and TSH every six weeks to adjust your ATDs to bring the Free Ts to the mid ranges? Because you are very hypO right now, you will likely need to not take any ATDs for several days and restart on a smaller doses.

How much were you on (which meds, CBZ or PTU) and how often did you take it?

You will need to get your thyroid levels under control first with the ATDs before even considering surgery or RAI.

RAI is not suggested for women in child-bearing years and who want to have children. Please do a search here at DS and read up on all the RAI stories. Some have done well and some have not.

I went below the levels with the ATDs and I take Methimazole. I had to stop taking it for several days and restart on a much smaller doses to bring the Free T4 back up to mid ranges and to get the TSH to come down.

I remembered having been on something like 7.5mg and restarted on 2.5 mg. I eventually went to 3.75 mg per day and was on the same dosage for almost two years.

Take care... :-)

P.S. Consider coming over to the Graves' Disease board here at DS. There's more people participating and you'll also get the feedback needed from others having had RAI done besides reading the RAI stories through the DS.

{{{hugs}}} and take care... :-)

Hi clk74...Im happy to see this topic come up again. I just posted the latest study on the graves disease group...as mmz said...you would probably get more help there...more people are involved and you will recieve more input. Here is that same study and please click on the link provided in the article.

http://www.elaine-moore.com/MyBlog...

We also have an info data base set up for newcomers...go to the Graves Disease section and click on groups at the top of your screen..then click on Graves Disease General info....you will find a lot of info on the choices you feel you may be facing...I hope this helps..Big Hugs...Kathy

If I was your age I would have surgery if the meds don't work. It sounds like you were way overdosed on the meds though..maybe get a second opinion for sure.

Hi all

For some reason my labs didn't post properly...and it missed out a chunk of my post regarding my goitre, meds etc. I've had those problems on here before, you'd think I'd have learnt by now LOL

So to clarify, my labs were as follows
TSH 18.3 range 0.15-3.2
FT4 was "below absolute low" at less than 5.0 range 10.3-24.5
T3-Thyroxine was 19 range 58-161
The lab didn't bother testing FT3 as everything else was so far out of whack.

Getting bloods every 6 weeks, and the tiniest change in CBZ dose is making my thyroid levels fluctuate wildly. Swinging literally from very hyper to very hypo in a very short time, with even just a 5mg change.

Currently on 15mg, every other day, taken 3 times a day on the day that I take it.
Previously on 15mg every day, 3 times a day.
Prior to that 30mg
Prior to that 15 mg
Prior to that 30 mg
etc etc etc
Highest I've ever been on was 40mg

I do understand that surgery etc would be better if we could get my levels to stabilize, but the problem is that they just refuse to do so...and no matter what we do, my levels are literally all over the place, my doc and endo have both said that its completely out of control.

The other bit that was left out of my original post, due to some square brackets I think? was that my goitre has gone totally mad, and after having a multinodular goitre on the left side for many years with little or no discomfort etc, and nothing at all on the right hand side, now the right hand side has swollen to larger than the left....in less than 10 days, and is causing me huge problems...not least of which is making me look and sound like a bullfrog.

Hope this clarifies a few more things for you all, assuming the forum software doesn't cut out more chunks of text again.

Hi! Have you tried taking 10 everyday? Going from 15 to 30 to 15 isn't 5 mgs. It's 15 mgs. So at these labs you were taking 15 mgs a day? If so that's way too much for you. A high tsh in Graves means either remission, or you are way overdosed.

Hi clk74:

Do you split up the CBZ doses two or three times a day? If it were me, I would do this and then take maybe a three day break since your labs are very, very hypO. Then I would restart on a lowered doses of several times a day to find the balance.

Let us know please because I do care and did wonder how you'd been doing lately.

{{{hugs}}} :-)

Wait, I see it now how often you took the CBZ.

Ok consider this, don't make huge CBZ dose changes. Ideally to make it more even keeled, consider making changes like 2.5 mg to no more than 5 mg at a time. The thing is, the CBZ is working very well for you, only too well!

You will need to lay off of the CBZ for several days and restart on a smaller doses such as 10 mg per day. You need your Free Ts to come back up before restarting.