Central hypothyroidism and out of control Help me please!

[Teresamarie]

Hi

I want to first say thank you to all on the board. I’ve been soaking up as much info as I can get from all the posts and replies.

I’ve got lots of problems but the worst one right now is this feeling of the jitters or butterflies as some have called it. Never felt as horrible as I do now.....

I found out a year ago I had central hypothyroidism, pituitary tumor removed in 2001. Since that time I had levo bumped up by 12.5 mg every 6 to 8 weeks. My dosage got up to 88 mg when I began to have a bad case of the ants! Doc told me to lower to 75 mg. It’s been a week and it’s as bad as ever!! Yikes!

Just met with doc today and we agreed to keep at this dose until 6-8 weeks to allow for change. Sounds great except that I can’t sleep. Nope. Nada. It’s been 3 days now. Any ideas when this shaking will stop? I’m desperate!

Another thing is that doc is changing script from levo to name brand Synthroid. Will this help? Doc felt it might. I’m up for anything. Supposedly it’s better for hypo that’s pituitary based.

Here’s my recent results. No longer test T3 as it is always extremely low, told I just don’t make it now. Also told I don’t want to add T3 to my meds because I’m already shaking.

I would love some help. FYI: I have:

Adrenal insufficiency

Central hypothyroidism

Diabetes insipidus

Again, thanks for your help.

Teresa

[greygoose]

No longer test T3 as it is always extremely low, told I just don’t make it now. Also told I don’t want to add T3 to my meds because I’m already shaking.

I think if any endo said that to me, I'd be out the door like a shot! The whole point of thyroid hormone replacement is to raise the FT3. If you never test it, how will you know if it's rising? And, how will you know if you're converting T4 to T3 correctly?

Obviously, at the moment, you can't tell how well you're converting because you don't have much T4 to convert. But, later you will. As your FT4 rises it will become more and more important to know your FT3 level. It's the most important number. And, if you have Secondary Hypo, why are they even bothering to test the TSH?

As for T3 making you shake… You're probably shaking because you're so low on T3. I'm not sure your endo know what T3 is. Plus, I've read your other posts, and his idea that Synthroid is better for Central hypo is rather strange. The active ingredient in all levos is T4 - levothyroxine. It's the inactive ingredients that change from brand to brand. And, inactive ingredients can agree with you or not, but that's got nothing to do with whether you have Primary, Secondary or Tertiary hypo. Also, his idea of just going by symptoms because you have Central hypo is ok, but I think he means going by symptoms rather than the TSH, as most doctors tend to do. But, he's still ignoring the most important number, the FT3. Given that so many symptoms cross over between hypo and hyper, I would be very wary of dosing by symptoms without testing the FT3, if I were you.

[Teresamarie in reply to greygoose]

Hi greygoose

How right you are. I was celebrating because I was heard. I’ve a sneaking suspicion that she is not understanding why we need all the hormones. I will heed your advice and ask all testing. I feel so tired and confused. Just want to feel better!

[greygoose in reply to Teresamarie]

Of course you do - don't we all! But, I'm not convinced this endo is going to make you well. You need to be on your guard, and ready to question what she says. Do your homework, learn about your disease and how to treat it. You'll soon pick it up.

[Teresamarie in reply to greygoose]

Just tried taking away meds vs adding yesterday. Prednisone (5 mg) and cymbalta (60mg) and lyrica (100 mg) gone!

I slept all night! Whether from exhaustion or meds not sure but I’m following this path today. (Not sure if I mentioned I have severe psoriatic arthritis)

[greygoose in reply to Teresamarie]

I don't know any of those meds from personal experience, but obviously the less drugs you can take the better.