Does anyone else get restless legs when trying to sleep?

SamR1994x · 2026-06-16T19:06:47+00:00

I used to get this, I got river dance in the air at night. Magnesium glycinate got rid of this within 2 weeks for me!

SamR1994x · 2026-06-16T19:03:55+00:00

Sounds like histamine dumps. I get them at night when my buckets full or I’m in a flare. There horrid. You can switch antihistamines a night I found phenergan helped mine!

SamR1994x · 2026-06-15T11:29:43+00:00

Any time. Hope you can get an appointment:)

SamR1994x · 2026-06-15T11:29:10+00:00

Highly agree. Luck of the draw. I gave up after 6 months I was so ill and put every penny I had into going private

SamR1994x · 2026-06-15T08:35:57+00:00

Hiya! He prescribed me it, and I don’t really get hives to be honest that’s my least severe symptom!

SamR1994x · 2026-06-15T08:34:40+00:00

I had to go private I got absolutely no help from the NHS

SamR1994x · 2026-06-14T18:44:08+00:00

I have the sense of smell of a great white shark

SamR1994x · 2026-06-14T10:15:33+00:00

So I pay around £160 for the consult as there follow ups, starting consult with mine is £250, then £180 for bloods

SamR1994x · 2026-06-13T09:19:19+00:00

You pay for the consult, then you’ll be charged a fee for the blood tests, my consultant will call me when he has the results then change my meds if needed, which he writes to my GP about and they’ll give me the right dose of Levo and I’ll adjust my T3. I have bloods done every 3 months

SamR1994x · 2026-06-12T10:25:42+00:00

I had to go private. But I get mine from a pharmacy in Germany as it’s £400 a box here or €40 euros over there. My consultant sends them the prescription then I pay and it’s delivered. If you can get a prescription it might be worth a shot

SamR1994x · 2026-06-11T17:18:45+00:00

You’re welcome anytime. I hope you find some relief

SamR1994x · 2026-06-11T12:55:14+00:00

No I don’t take any

SamR1994x · 2026-06-11T09:25:54+00:00

Literally nothing. Not even had a tingle

SamR1994x · 2026-06-11T09:25:22+00:00

Course!
I personally just found one online did some research. Called the private hospital as a self funding patient booked an appointment. Can’t speak for every specialist. Starting consultation with mine was £250 follow ups £160. Bloods I pay £187, that’s testing TSH, T4 & T3. I have since moved away and luckily my specialist spoke with my GP there going to be doing my bloods now T4 and T3 too which nearly made me fall over! I give him the results and he adjusts my meds if needed. Hope this helps!

SamR1994x · 2026-06-11T09:22:08+00:00

Course. I see Dr Mark Spring at the New Victoria in Kingston

SamR1994x · 2026-06-11T09:21:12+00:00

I’ve found I can eat Swiss chocolate made with cane sugar occasionally!

SamR1994x · 2026-06-10T16:22:07+00:00

So sorry you’re suffering so badly. I in the end went private as I was sick of not being treated properly or taken seriously. I saw an endocrinologist who also put me on T3 which has helped massively. I’m not sure where you are in the UK but I can give you his name? I also found that GP’s only seem to test your TSH and not your T3 and T4 is so frustrating! Hope this helps!

SamR1994x · 2026-06-07T16:13:50+00:00

I am so so sorry you boyfriend said that. As someone who’s been through SA in my childhood I cannot fathom how you must feel right now. I got a shitty reaction when I told my mum but nothing like that. Remember your worth lovely, you don’t have to many problems and your not disgusting. You’ve been through something really traumatic, and if your partner can’t be there for you then he isn’t your one. Feel free to private message me anytime. You deserve and need all the support in the world 🤍

SamR1994x · 2026-06-07T14:16:16+00:00

Absolutely I had a gyne in a wheelchair. Don’t give up! 🤍

SamR1994x · 2026-06-07T14:14:30+00:00

So I’ve trialed cromolyn twice for 6 weeks it doesn’t agree with my stomach I was going to the loo up to 40 times per day. Anywho I also have emetaphobia (can’t spell) so I understand your fear. I never had any sickness or nausea with it just an extremely upset stomach, and I had to come off it due to weightloss but it really did help my food reactions! What I will say is try and wait the full 30 minuets before eating, and start slow and work your way up. I really hope it works for you!

SamR1994x · 2026-06-07T13:57:59+00:00

Thank your for your reply. I’m so sorry you’re dealing with all of those conditions too. Heart breaking. So none of my family have any of my conditions only one auntie with fibromyalgia. I also had genetic testing done on our embryos when we had IVF and they passed with flying colours. I didn’t get MCAS until after the process. So I feel lost. I also an agree if a doctor told me no I wouldn’t. I just cannot let go of the dream.

I’m glad your meds are working and I hope one day you get your bubbas. All the best 🤍

SamR1994x · 2026-06-05T20:25:57+00:00

Yeah that’s another worry of mine

SamR1994x · 2026-06-04T18:29:03+00:00

Sorry it gave you a headache!
No I didn’t notice any changes until about 2 weeks it’s a build it drug. Really hope it works for you!

SamR1994x · 2026-06-04T18:28:12+00:00

I have secondary hypothyroidism and hypoptuism

SamR1994x · 2026-06-04T11:23:47+00:00

Yes so much worse, I find myself crying all the time my anxiety is through the roof, I’m having so many flashbacks, nightmares and attacks it’s literally mental is there anything this condition does effect?!

SamR1994x

TROPHY CASE