MCAS and LEVOTHYROXINE Nightmare

[CGH123]

MCAS AND MEDS

MCAS strikes again I can't take tablet or liquid levothyroxine as I've had the worst histamine flare even at 25mcg. Been in bed 4 days now crashing headache, body pains, inflammation, dizziness, fatigue all from 1 tiny dose of 25mcg liquid levothyroxine.

What can I do ? I desperately need it as I have central hypothyroidism but can't take it

Also I need hrt but also can't tolerate estrogen

I take growth hormone with no issues

It's just a vicious circle and I'm sick of it, what can I do I already take maximum ketotifen.

Mast cells are a nightmare 😫

[birkie]

Hi CGH123 Although I can't offer you any help I just wanted to say I'm the same with T4 and unfortunately T3 thyroid medication, mine is gut related in that it flares up my colitis giving me awful inflamation ,cramping and diarrhoea along with awful headaches, horrid metallic taste in my mouth, sweating ( eventhough I'm not over medicated) bad body pains ,constant rashes and itching ,and im nauseated 😥

It's been 4 years now and the specialists keep giving me the same medication hoping to get different outcomes ( that's a sign of insanity) I can't convert T4 to T3 either but that's because of an absorption issue ( colits) .

I've just about been put on every T4 and T3 going , I saw the endo again and again she took me of the T3 and put me back on the T4 the old swappyroo,) knowing nothing is going to change, and it hasn't I've again started with the awful side effects, I'm left with suffering instead of getting better , I've tried and begged to go on natural dessecated thyroid (NDT) but the endo refused point blank 😡 putting me back on the awful T4.

I'm seeing another endo at the end of June and will just have to suffer with these awful side effects until then, but I'm at a loss as to how to approach this subject with another endo because quite frankly they all seem to have the same awful attitude towards patients 😡

I've some nice photos on my phone of my diarrhoea and rashes...I do hope he as his lunch break after seeing me😂

[CatsofCatford]

Dear CGH123, I don’t have your issues, just a tendency to histamine intolerance from time to time, but you have my heartfelt sympathy. In trying to find out more about managing histamines I’ve come across the work of Alison Vickery who herself had MCAS and who suffered a brain injury because of it. At one time she too was unable to tolerate any medications. She shares her knowledge very freely on her website, perhaps you’ll find something there that will help you? I hope so and I’m sorry I can’t offer you anything more practical. Her webpage is at: alisonvickery.com .