is it possible to control extremely low thyroid with such a low dose?

[ingrid8624]

I have had seriously low thyroid for about 40 years.  The most recent unmedicated TSH test had a result of 166.  I took 200 mcg for about 35 years, but in the last five years (I am 65) I have had to reduce the dose drastically.  Now, it seems that I only need about 25mcg.  Is this possible?  Any suggestion as to why this would happen?

[ingrid8624]

Thanks, all,
The symptoms I had were, trouble breathing, weight gain, joint pain, hair falling out and always tired.  Those are, of course symptoms which could be both high and low thyroid, making it a pain to figure out for yourself what is going on.  As I said, above, my T4 was around 18, which is also on the high side, so I thought I would try to lower the dose.  My first action was to stop medication altogether for a few days, and WOW, my symptoms stopped within three days, so it seems clear that the problem was too much medication.  I have now added, by tiny increments, a little bit every day and will end up at 50 tomorrow, hopefully that will make me feel better.
thanks, everyone

[gimel]

What kind of symptoms are you having?  Why do you have to wait for 2 more months to go in for testing?  You should insist on being tested for Free T3, along with Free T4 and TSH.  If the doctor resists, give him a copy of this abstract from a scientific study that showed that hypo symptoms correlated best with Free T3, while Free T4 and TSH did not correlate.    

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

As Barb mentioned, you really cannot know whether your medication is optimal or not without testing for Free T3 and Free T4.  TSH testing alone does not work for hypo patients.

[ingrid8624]

Yes, I had read that too, but this does seem extreme, to me, to go from 200 to 25....
thanks.

[ingrid8624]

Dear Barb135,
thanks for answering...TSH without medication was in 2010, and I do remember, though I don't have the records for it, that when I was originally diagnosed, when I was about 27, it was decribed as "seriously low".  They do not, apparently test for T3 here, in Switzerland, but the T4 was then 18.7, and is now 18.47.  The reason I went to an endo, and she took me off the meds entirely, was that for several years, every once in a while I get symptoms of too much medication.  I will have my blood tested again in about two months and I'll ask if she can test the T3, just to see what it is doing.

[Red_Star]

I can't access the link you posted.  I wish i was 29 LOL!  

[gimel]

As I read that sentence, "There may be a decline in thyroxine requirements in the elderly", I wonder if it really is a decline in requirements, or is it just an unwanted decline in thyroid levels?   There is a difference of opinion as to whether the decline may be good for you overall, and should be accepted, or if the decline should be resisted by taking thyroid hormone replacement, when resultant symptoms are unwanted.  People take many different meds to ward off unwanted potential problems related to aging.  Should thyroid levels be any different?  It is an interesting question.  Have a look at this link and make your choice, for when you ever get to the point of being older than 29.  LOL  

http://nahypothyroidism.org/thyroid-and-aging-graph/

[Red_Star]

"There may be a decline in thyroxine requirements in the elderly." One short sentence i remember reading on the "Modern management of thyroid replacement therapy" - Australian Prescriber. Elderly is a bit harsh. Let's say you are maturing gracefully. :)

[Barb135]

Is TSH the only test you are having done?  TSH is a pituitary hormone and not necessarily indicative of thyroid function.  You need also to have Free T3 and Free T4 tested; those are the actual thyroid hormones, with FT3 being most important, because that's the one used at the cellular level.  

That said - when was that TSH of 166 done?