Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Hypothyroidism and not tolerating meds http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1385341304 Message started by Nicole on 11/24/13 at 13:01:44

Title: Hypothyroidism and not tolerating meds
Post by Nicole on 11/24/13 at 13:01:44

I had blood work run recently and found that I have TSH at 7.5 and T4 at .71 - in other words I have hypothyroidism. I was given a prescription for Synthroid, but had to have the generic Levothyroxine given because of the fillers/inactive ingredients in Synthroid. I react to all dyes and many inactive ingredients.

I didn't tolerate the Levothyroxine - bad stomach aches. My mast cell disorder is mainly centered in my gut with high mast cell counts still despite being on a mast cell cocktail of drugs.

I tried the compounded T4 with no fillers and still didn't tolerate it. My endocrinologist then tried compounded T3 and then dessicated porcine T3/T4 compounded - I couldn't tolerate any of these either. I got a burning mouth symptom, canker sores appeared the next day, and my gut has been reacting for a week.

Has anyone had this issue of reacting to the actual hormone itself? I'm not reacting to the fillers or the capsule - I've had this same compounding pharmacy use the same capsule and filler for my Ketotifen, which I tolerate fine. So it's got to be that I'm reacting to the drug itself.

The doc doesn't know what to do with me! Help.

Title: Re: Hypothyroidism and not tolerating meds
Post by Sui Generis on 11/27/13 at 01:49:50

T4 lowers DAO and MAO production, (in a rat study) measured in blood.
I ASSUME it affects GI levels of DAO also.

T4 triggered my MCAD. I get itchy ears and mouth roof, swollen ears and turbinate's, gaging phlegm, vasodilation rash on my cheeks(no GI issues though). I have an IgE level of 6 on a range of (0 186) as normal, so it has nothing to do with antigens. Taking T3 ONLY prevents the MCAD reaction, but, causes a host of other problematic side effects, and I could not tolerate it. I am currently mast cell stable on 2.5 grains of NDT and 6mcg of T3 a day. By sublingual-ing my T4-T3 meds in 6 small doses over the day, I can avoid triggering my mast cells.

Yes, I also need to utilize every Vitamin, Mineral, and Supplement trick known to keep my mast cells from reacting. Have you tried DAOSIN/HISTAME?

Title: Re: Hypothyroidism and not tolerating meds
Post by DeborahW, Founder on 11/27/13 at 13:31:37

Nicole, do you have a mast cell doctor? If so, you need to have your 2 doctors help so they can work together to figure out how to treat the hypothyroidism.