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-   -   T3 only question...getting concerned (http://www.lowcarbfriends.com/bbs/thyroid/798685-t3-only-question-getting-concerned.html)

Emmaline 03-04-2013 08:14 AM

T3 only question...getting concerned
I've been on T3 only therapy for 5 years with great success. Any T4 combo was disastrous for me, but taking just Cytomel changed my life!

Recently I had to get an auth to continue Cytomel because it''s non-formulary for my insurance. They kept on saying that they didn't get my physician's fax (it was faxed 4-5 times) and it took 3 weeks ti get it filled. I was taking very old Cytomel and some generics which don't agree with me until this was approved. Ever since I've been experiencing palpitations to the point where I can't remain sitting. I went in to my pcp and they did an EKG, saw what my heart was doing but was not concerned. I take that as they thought it was not my heart but a medication issue. They gave me some T4 but in a very small dose...13 mcgs. On my own I took double that and my symptoms reduced greatly.

I'm waiting for my blood results as we speak. My concern is there is no one around me that know this protocol. My pcp was good enough to keep me on it since I did so poorly on T4 combos. Anyone have any thoughts? Thanks!

Leo41 03-04-2013 08:59 AM

No one should ever self-treat with thyroid hormones. Taking more or less than what has been prescribed is never a good idea. You need a doctor who understands thyroid and can manage your care.

When you initially had problems with the T4, it could actually have been the brand rather than T4 itself. For example, I've been taking Levoxyl ever since I was diagnoses, but my pharmacist insisted on giving me Levothyroxine once, claiming that they are identical. I felt dreadful, and when I told my endo, he said that no two brands are ever identical, and it is very common to be unable to take one or the other. I also had a problem with generic Cytomel, which I tried to take because my insurance company insisted. Fortunately, I was able to get a waiver when my endo wrote them that the generic was not adequate for me.

I tell you all this because it is not unusual to have a problem with thyroid Rx, and you need to work with a doctor to get yourself optimized. As I'm sure you know, T3 is a powerful hormone and excess can easily cause cardiac problems.

Emmaline 03-04-2013 09:50 AM

Yes, well aware! And I know it's not safe to self medicate. I'm in no way advocating that. But in this area there literally is no one. All the endos in the area have never heard of it even though there are practitioners across the states that do it. Mary Shoman's physician does it, if you are familiar with her.
I tried all brands of T4...Synthroid, the generic, Thyrolar, and Armour. It was clear to me that I was not converting at all. I did not feel human until I got on Cytomel. All generics give me issues. It's been a frustrating ride...All endos in this area insist that conversion is not the issue, and do not believe in T3 only therapy. It was my internist that got me on it and was dumbfounded at my recovery.

Leo41 03-04-2013 10:38 AM

I have Hashi's, and I take 25mcg of T3. My endo reduced my T4, but I still take some (50mcg). Since he lowered the dosage, my T4 level has steadily declined, but he doesn't seem to think that's a problem. I'm wondering whether T4 exists mainly to convert, and since I'm not converting much, I don't need much T4? I don't know, but I plan to ask at my next appointment, as my endo is always willing to explain.

When I first experienced conversion problems (about 5 years ago), and my T3 'tanked,' I couldn't believe how awful I felt--and how Cytomel 'instantly' revived me.

I'm fortunate because there are many, many doctors who don't believe in prescribing T3--and that never ceases to amaze me because my endo says that problems with conversion are 'characteristic' of Hashi's.

Emmaline 03-04-2013 10:52 AM

I know! One endo I saw would prescribe in but only in small amounts. The Thyrolar I took had 25mcgs in it and it worked for a while, but it wasn't enough T3 for me. Other endos around here don't prescribe it at all and want to bring the ones that do down!

I've read article after article about conversion issues with us Hashi's...so I'm not sure why this is a hot spot for the uninformed...Central NY...that is...

My feeling is the original problem may have resolved and my current dose of 75mcgs may be too much for me now. Taking the T4 seemed to help...So maybe when my labs come back we can work on upping the T4 and lowering the T3 and see how that ride will be....lord help us all...

GME 03-11-2013 10:50 PM

Where are you? My doctor treats me with T3. I am in the Bay Area of California and they have a SoCal office and I believe they are opening one in the south- Atlanta I believe.

inatic 03-12-2013 06:17 PM

they opened in in NW atlanta. I havent been and there is no feedback yet on my thyroid Ga forum.

Emmaline 03-18-2013 06:42 PM

I'm in Central NY. I'm trying 26mcg of Tirosint (T4 in a gel cap) with 50mcgs of Cytomel. The arythmias's have slowed down almost entirely.

I think when I go get my next labs I should have them do a RT3 test...

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