Multiple autoimmune diseases and raised dose of T4

Does anyone else here have this mix - Hashimoto’s, Sjögren’s, overlap connective tissue diseases which include Raynaud’s and Erythromelagia, neuropathy and Vitiligo? Also lymphedema (fluid retention) relating to the above - particularly in the abdomen and pelvic area. I’m awaiting tests to see if I have pulmonary hypertension.

I ask here because I’m desperately hoping that my endo agreeing to increase my dose of Levo from 125 to 150mcg last week, might help with the ascites/ abdominal fluid retention that is leading to me gaining more and more weight. I’m newly glucose intolerant so really want to avoid Diabetes.

I’ve tried being 100% gluten free, AIP diet, low carb diet (I’m now glucose intolerant) for most of the time over the past 9 years and trying to up my intake of natural diuretics. But still the connective tissue diseases seem to plague me and my diet doesn’t seem to make any significant difference to my symptoms - although perhaps things would be even worse if I didn’t watch my diet hard. I walk the dogs daily, do 15 minutes a day on my exercise bike, avoid refined foods, sugars, bad carbs like the plague.

Question: how long should it take on the raised dose of Levo to notice improvements? The endo just said to get my thyroid bloods checked in 6 weeks and self monitor accordingly with ideal TSH being 0.1. He said if my TSH is over this number still then go up to 175 mcg. I see my GP tomorrow to explain this re repeat prescriptions because my 25mcg has come off the online list so I can’t order more. I plan to ask her about the generalised fluid retention and weight gain.

There was no mention of FT4 or 3 but I know in the past that these go down to borderline when my TSH goes up into range. So far the only extra symptom I’m experiencing is a gastritis flare with flatulence but this might be coincidence. I’m a bit worried about being over medicated since I’m self monitoring.

[shaws Administrator]

You need to research Polyglandular Autoimmune Diseases. I think there's three:

rarediseases.info.nih.gov/d...

Autoimmune polyglandular syndrome type 2

rarediseases.info.nih.gov/d...

You also need a Specialist as I doubt many Endocrinologists may not be aware of this condition.

[Hidden in reply to shaws]

Thanks I’ve never come across either type of this condition before. I will definitely save these links but I don’t have any family members I’m aware of with autoimmune diseases apart from a second cousin with Sjögren’s. I’ve been tested for Coeliac and Addisons and definitely don’t have these.

I do have something called Hypergammaglobulemia though but I don’t think this relates to anything endocrine?

[Hidden in reply to shaws]

Ps sorry I replied having only read about types 1 and 2. I see that type 3 is a very similar mix to mine. Thank-you!