Graves' Disease Support Group

Hi there!

Glad you found us, too! Many of us have received inadequate care from a multitude of endos - I know I've learned a lot along the way thanks to forum peeps - time to give back.

Very happy for you that your doctor is running the right labs - too many don't.

I do believe Thyroxine, Free, Direct is indeed T4, Free or FT4 as we often abbreviate. The ranges are consistent with FT4.

I suspect you were having hyPO symptoms at the time of those August labs since the FT4 was quite at the bottom end of the range - I know I was on my knees with FT4 that low and my lab's ranges are .61-1.76

Ideally, our doctors should be dosing us so that our FT4 is mid-range, at least. Thyroid hormone levels affect metabolic function - everyone's different but most people feel best at mid-range FT4, at least.

Based upon the ranges you provided, your mid-range FT4 would be 1.30 - now you can see just how low yours was back in August.

Your current symptoms are definitely hyPO....I have had them and some.

You were wise in changing that alternating dose pattern to an even dose of 3.75mg. I know many endos think alternating doses are fine since it takes awhile for thyroid hormone levels to stabilize but - and this is a big but - they seem to ignore the fact that our body's needs change on a daily basis....why wouldn't we want to at least offer the body some semblance of meds dose stability which would result in better thyroid hormone stability?

The story you're telling is very similar to mine quite recently. Mind you, I spent the better part of my relationship with endo #2 (I just started with endo #3 this week) arguing about FT4 levels and doses.

She was overly cautious with dose reductions and kept my FT4 too low for me - I suspect your doctor did the same for you since your TSH was SO high in August (majorly hyPO TSH).

Sounds to me like you might need to reduce your dose. However,
it can take some time for symptoms to abate.

Please, please, please - call your endo, tell him/her what's been going on re symptoms and the decision to reduce your dose (too late now - might as well get it out there. Believe me, I was in the same position - the only thing I did differently was get labs and then reduce the dose right afterwards. Then, when I saw my endo the following week, I'd tell her what I did.....my labs always matched my symptoms so she wound up agreeing with my decision to reduce my dose. The other difference is that my endo was still seeing me every 6 wks - your endo should not have let you go this long.... you could take the position that you just didn't know what to do, did what you felt was best and then realized you should be in touch with your endo - that's the truth - always easiest to remember - right? :)

Ask to have labs run now and tell the endo you want to lower your dose even more based upon your symptoms. He/she might want to wait until the labs come back and you might just want to try to hang in there...sometimes it takes awhile for symptoms to abate.

Best of luck to you - please let us know how you make out.

:) Carol

Me again

You know your endo got "credit" for running the right labs but then lost some by letting you go too long between labs.

So, I'm not sure what he/she will do with the information from your next set of labs so I will repeat this most important fact.

You want your FT4 to be mid-range, at least. Based upon your lab's ranges, that would mean 1.30.

If your labs come back with FT4 lower than 1.30, you will definitely need a dose decrease. Don't let your doctor tell you otherwise.

If/he she does tell you otherwise and starts mentioning your TSH (no matter what it is), a MAJOR red flag needs to go up for you. Too many endos put TSH into their "dosing equation" - not right.

Right now, with you being just diagnosed with Graves' disease earlier this year, I am sure you have a lot of TSI antibodies....TSI stands for Thyroid Stimulating Immunoglobulin and are the antibodies that caused Graves' in the first place.

TSI acts in lieu of TSH and stimulates the thyroid. The pituitary gland recognizes this and stops producing TSH. Therefore, in Graves' patients, TSH is suppressed for months, sometimes years until the antibodies disappear and remission is achieved.

If your doctor gives you a hard time about this - I have a bunch of resource links from The Journal of Clinical Endocrinology and Metabolism as well as from www.thyroidmanager.org that confirm dosing for Graves' disease should be based upon FT4 only.

I also have articles to confirm there are no dangers associated with suppressed TSH (all 3 of my endos preached dangers associated with suppressed TSH - it is the presence of excess thyroid hormone and the resultant suppressed TSH that can cause cardiac and bone issues.....once the excess hormones are taken care of, there are no more risks - endos miss this common sense logic, for some reason)

Just so you know, www.thyroidmanager.org is a website written by well-respected endos to help other endos and their patients keep up-to-date with all things thyroid. I

Anyway, sorry if I provided too much information :) I think you can tell what I've been through and I am bound and determine to help anyone from going through the same thing.....we all deserve better care.

Hi and welcome:

As cds ays. If it were me, it's better to try to keep to the similar doses at a steady rate, don't take one type of doses for several days and then switch to a lesser or more amount for the remaining three days. Slow and steady wins the race here.

Be sure to lab every six weeks on the average, at least while working on the dose adjustments to keep the Free Ts at mid ranges.

{{{hugs}}} :-)

Hi!
You sound hypo to me. I think once your TSH reached 4, and your FT4 lowered as much as it did, it might have been good for your doctor to have you go off your Methimazole completely, or give you a little T4 replacement.
I am in remission right now, and found that after I started making TSH again, no matter how small the dose of methimazole, I would keep going more hypo. My FT4 dropped below range and my TSH jumped to almost 9 at one point. You might be in remission, too, especially if small amounts of methimazole make you hypo.
Just a word of caution. Hypo not only feels bad, but is bad for you. Most of the trouble that I had with my eyes (thyroid eye disease) occurred when I was hypo so you don't want to allow your endo to leave you like that for long, and it sounds like you have a typical "keep 'em hypo at all costs!" type of endo. Most of us have had one of those. The goal needs to be to stay in range to be healthy.
Take care,
Hannah