Where to go ....

[Lindy]

Hi guys .... Briefly - been taking levo for 30 yrs ... Been happy and settled on a dose of 150 mcg .... until two years ago ish ....

TSH of 0.02 ... Doc reduced ... Three months later TSH 17.5 .... Back to 150 mcg and another result of 0.002 .... Referred to Endo. She suggested smaller reductions over longer time so reduced to 125 mcg once per week with 150 mcg the other six days which produced another TSH of 0.002 - T3 was 5.1 after three months. Last three months have reduced again .... 125 mcg two days a week with 150 the other five days.

Now TSH 0.34 ....

Vit D also came back low at 46 in spite of a very recent three week trip to very hot South Caolina and a week of sunshine coastal walks at the coast in this country.

But I feel pants ! Low in mood, anxiety, panics, busy brain, suddenly waking in a panic several times a night. Problems with memory and words, flushing, absences that are really frightening.

I ache, am cold, have a sense of dread, joint pains that just appear then change and somewhere else hurts ..... Just a sad, cold wreck.

Am fairly sure will be simply discharged at my appt next week with the Endo with that TSH ... Am also fairly sure will sit and cry cos feel so awful.

i feel half myself that hurts .... Any suggestions would be so appreciated - thank you.

Lindy

[greygoose]

I think you'd be better off being discharged by that endo, and find yourself one that know something about thyroid. Chopping and changing your dose due to your TSH is just not how it's done! S/he will ruin your metabolism like that.

What was your TSH when you felt well? Not that it really matters, because the TSH is pretty meaningless once you're on thyroid hormone replacement. Did s/he do any other tests? Like FT4, FT3, the important ones?

You obviously need to raise that vit D, and obviously the hot sun isn't going to do it, so you should supplement some D3 - with a little magnesium, zinc and vit K2 to balance things.

Have you had your vit B12, folate, iron and ferritin tested? They could be low, too. You need all those to be optimal in order for your body to be able to use the hormone you're giving it. And low nutrients can cause their own symptoms, too.

What your really need is a doctor - any sort of doctor, endos aren't always the best for thyroid problems - who is willing to ignore the low TSH - which isn't important, anyway - and do the other tests, and take your symptoms into consideration, and put you back on the 150 where you felt well. Or, you could self-treat, and not be dependant on the whims of an ignorant doctor. Not much else you can do.

[Muffy]

Your FT3 reading was excellent, so no problem staying on your higher dose. Dr. Toft, , Thyroid Disorders (The British Medical Association Family Doctor Guide to), states that in some cases the TSH should be below 0 and FT4 above range providing FT3 within range.

[Glynisrose]

Any form of thyroxine can supress your TSH which is a pituartry hormone NOT a thyroid hormone.