[AmyM]

#1060383

Hello again. Since my last post (where I was on levothyroxine, and, noticing my TSH levels weren’t coming down much and after doing much research) I convinced my doc to add some T3 in. My labs on levo and before taking the compound my TSH were:

TSH 23.00
Free T3 2.26
Free T4 1.19

2 months later, after being on the compound, my labs go like this:

TSH 31.10
Free T3 3.35
Free T4 .49

So, great. My TSH has gone up–wrong way, according to what I know. Today, after reading these labs my doc has increased me from a 150 mg compound to a 240 mg compound, staying w/the T3 added in.

Ugh.

I hope he knows what he’s doing. So frustrating. Anyone else here have experience w/the compound treatment?

By the way, my history is: Graves dx in 2011, almost 2 years on methimazole and propranolol, still hyper…RAI therapy in Sept 13. 6 weeks later went hypo and started levothyroxine–gradually increasing dose til I convinced them to let me try adding T3.

Not sure I’m any better off now

[snelsen]

#1182328

That seems like a huge jump to me.
I don’t have any experience with the compound, and from what I have read, the doses of a compound drug are unpredictable and unregulated.
So, for me Graves is messy enough, and i stick with Synthroid. I did not check when your last post was, but it has been my experience that after a change, or getting a lab, 8 weeks is the very least amount of time to wait,and 10-12 is more representative of what is really going on.

Guess we’ll see how you feel with this increase. The other thing about adding T3 to T3, is that if you did do that, I believe that because of the half life of T4, it needs to be taken 3-4 times a day. There is quite a daily up and down with T4.

However, I am just yakking about what I have learned along the way, so since you want to do this, try to remember to wait at least 8 weeks if not longer for another lab. And notice how you feel. If you feel a rush of hyper feeling, followed by a let down and a more hypo feeling in a single day. Record your symptoms, how you feel, and changes, so you have a good record for yourself and your doc.
Shirley

[AmyM]

#1182329

Thanks for the reply!

This is so frustrating. Not to mention, expensive w/the compound I’m now on. I just want my old self back, as does everyone, I’m sure.

I really don’t fee “bad”. I just don’t feel completely “normal” yet. And now I’m studying foods I should and shouldn’t be eating. But it just seems that you can’t do one thing until something else levels out.

Lord, I’ll be 50 by the time this gets straightened out! And in the middle of menopause, probably! ha

Take care..

[Kimberly]

#1182330

We’ve heard mixed reviews from patients who have tried combination therapy. Some feel that it brought back a return of their hypER symptoms, while others feel that it made a significant positive improvement in their symptoms and their quality of life.

It’s definitely important to make sure that you are using a reliable compounding pharmacy. Another issue to consider is whether you might be consuming other substances that could affect absorption, for example, iron, calcium, or soy. The standard guidelines are to take replacement hormone 4 hours apart from these substances, although I recently heard a doctor say that 2 hours might be sufficient.

As a last resort, you might ask your doc to consider GI issues that could be affecting absorption, for example, Celiac disease. Here’s a piece from the American Thyroid Association on this issue:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/wp-content/uploads/publications/clinthy/volume24/issue3/clinthy_v243_4_5.pdf

Hope that you can find some relief!

[snelsen]

#1182331

I wonder if it would be better for you, if you want to continue T3 and T4, to take the pills separately. Cytomel is T4, I think. Then have a separate RX for your T3, levothyroxine. Might be cheaper, too, than a compounding pharmacy, and more reliable.

But I do have a bias about compounding pharmacies, since there does not seem to be much regulation of them. Worth exploring that more than I have.
Shirley

[beckyhanlonnicholson]

#1182332

I had a hard time regulating T4/T3 compounded together. Now I take Synthroid and Cytomel separately and feeling great. Cytomel has really helped me get passed the fatigue and I finally feel normal again. The compound always had to much T3 added for me.

[barbra]

#1182333

Hi,

I have been on Cytomel, which is the T3, twice in addition to Levothyroxine and it really helped with the body/muscle aches and sluggishness. But both times it was only for a short while until my T3 levels came up and I felt better.
Now that I have been switched to Synthroid, 75 mcg, in December 2013, I seem to have evened out and am feeling fine. We’ll see what the numbers look like next month at my endo appointment.

Hugs.
Barbra.

[Teri_Odegaard]

#1182334

I am glad the ATD is working for you.

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