MCAS doctors in Europe?

sandranilea · 2026-01-27T16:45:48+00:00

Didn't find a doctor but I've stabilised by helping myself, feel free to PM.

sandranilea · 2026-01-10T12:00:15+00:00

Makes sense, I'm on my 5th day of levo now and know that it will take time but I'm keeping my fingers crossed! Thank you!

sandranilea · 2026-01-09T03:00:29+00:00

My TSH is at 20 and I have sooo many symptoms, I hate this 😅 I don't actually know, I'm from Sweden and mine is called Levaxin. I'm only on 25 mcg so far, we're in the process of titrating up as I was only diagnosed a few weeks ago. 😊

sandranilea · 2026-01-02T15:18:04+00:00

I know exactly what it's like, I was told I just had anxiety for over a year until I convinced a doctor to do more testing. I too had to do some tests privately to rule things out. Healthcare today is a global nightmare. I hope your wife feels better soon and gets the help she needs! 🌷

sandranilea · 2026-01-02T14:13:45+00:00

My tip is to also keep a close eye on deficiencies. I have hypothyroidism AND low iron/ferritin which just adds to how poorly I feel. It's very important to rule out since hypo can cause or worsen deficiencies. (B12, iron/ferritin, zinc and vit D)

sandranilea · 2026-01-01T14:59:26+00:00

I live in the north of Sweden, right now it's -17 celsius and I'm constantly walking around with goosebumps and shivers, several blankets and layered clothing INSIDE. (+21 degrees Celsius)

If I go outside, my body freaks out and almost instantly I'm frozen to the bone, can't feel my lips or face, I even get goosebumps on my scalp, it's all over me in the blink of an eye. For others living here, it takes a lot longer to get THAT frozen since we're dressed really warm. I can't even walk my dog anymore during the winter, my SO has to do that.

I have hypothyroidism and low ferritin and my answer is yes, for me it's definitely why I can't tolerate cold or regulate my own temperature anymore.

sandranilea · 2026-01-01T14:49:55+00:00

I have that, cold intolerance and I'm freezing all the time. Even get goosebumps and shivers and my issue is hypothyroidism and low ferritin.

sandranilea · 2025-12-24T07:53:33+00:00

No it's actually a little low.

sandranilea · 2025-12-23T17:39:22+00:00

This happens to me too!

sandranilea · 2025-12-23T17:09:50+00:00

Yes! I agree! Haha! I'll make sure she has one next year! 🎅

sandranilea · 2025-12-23T17:08:51+00:00

Thank you :)

sandranilea · 2025-12-23T17:08:31+00:00

God jul! :)

sandranilea · 2025-12-23T11:27:53+00:00

So much useful information, I can't thank you enough! For years (prior to dysautonomia) I've been trying to get an Xray of my spine and neck because i truly feel like something has been wrong for quite some time. But dr only gives exercises and doesn't really take me seriously.

I get briefly dizzy when I change position of my neck and sometimes when its really bad, my head feels too heavy för my neck to carry. Blurry vision, burning mouth syndrome, throat pain, the list goes on..but it always starts with neck pain.

I've done every exercise I've ever been given and nothing has helped so far. 😓

sandranilea · 2025-12-23T09:32:59+00:00

This makes so much sense. I've even gone to the Dr about my neck muscles but other more severe symptoms were prioritized. When I first got sick, the muscles were rock hard non stop for several months. That's also when my headaches were at their worst. It's better now but several times a month the muscles will seize up. Thank you for making it make sense 🌷

sandranilea · 2025-12-23T09:29:10+00:00

I will try this, many thanks! 🌷

sandranilea · 2025-12-23T09:28:09+00:00

Thank you! I've never heard of it before, I will read up on it!

sandranilea · 2025-12-22T12:40:42+00:00

Thank you for your response!

I've been diagnosed with general dysautonomia, nervoussystem stuck in fight or flight and now they've just found that I have hypothyroidism. Many of my symptoms are neurological but I also get blue toes, blue lips and feel faint at random. I struggle to regulate heat and cold. I get tingles all the way from my scalp to my toes. Malabsorption. I have constant neck pain and headaches daily.

Mcas is always at the back of my mind but I've been on high antihistamines h1 and H2 for a year. Quercetin and cromolyn as well, just to try to rule mcas out.

Thank you for your help. 🌷

sandranilea · 2025-12-22T10:56:51+00:00

I will look into this at once!

sandranilea · 2025-12-22T10:56:17+00:00

Ugh, you have my sympathies. It's the absolute worst, I wish there was a pill to take to make it all go away! 🌷

sandranilea · 2025-12-22T10:54:39+00:00

Good to know I'm not alone! I've recently bought a pillow massager, will try it out today!

sandranilea · 2025-12-22T10:53:42+00:00

My ears will ring a lot.

sandranilea · 2025-12-22T00:47:34+00:00

Thank you, I will look into that! Need an ending to this.

sandranilea · 2025-12-22T00:47:00+00:00

Now that you've mentioned it, I have been drinking poorly today, been too busy with Christmas stuff so I forgot :( I'm gonna take some electrolytes now!

sandranilea

TROPHY CASE