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Autoimmune disease

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Where to go for help?

9 replies

Hoolahoophop · 16/07/2021 11:18

Im so fed up of feeling exhausted.

I'm 38 I've been exhausted forever it feels. Have periods if energy when it feels like a weight has life then back to exhausted again. I try going to bed early but still wake up tired. I've done through periods of this for an long as I can remember. Feel generally run down a lot. Skin rashes, mouth ulcers, headaches, bowel issues. Then the joint pains when I was a child it was all my major joints. I knees, hips, shoulders, elbows, neck. Now it's mainly hips, knees and neck they grind and ache. I've been to the doctors various times from childhood to now when it's been particularly bad. They suggest ani inflammatory pain killers (though scans and blood test say I'm not inflamed) and more recently antidepressants. I do have lower iron and vid d but only borderline (docs disnt pick it up, relative doctor suggested I take some supliments after looking at blood results) I'm slightly over healthy weight (emotional eater when tired) but fit (run when I'm strong enough sometime 3 times a week and walk when ever I can) I do have a stressful work (company director) and homelife (family with difficult health issues) and two young children. But my general fatigue, pain and feeling of being run down has been with me since childhood.

I'm tired of being dismissed by the gp as it feels like there is something more than just a few aches and overdoing it. But I don't know where else to go.

I suspect I may have something like a mild ME of CFS after one consultant mentioned it in passing when I was just out of uni (and often crawling up the stairs by the end of the day) but never a diagnosis. I know if this was the case there would be to miracle cure, but maybe some of my less understanding relative would become a little more supportive.

How do you get a hot to listen or where do you go to get some help?

Thank you.

OP posts:
piglet81 · 16/07/2021 11:21

You mention blood tests - did they check your thyroid?

Sparrowsong · 16/07/2021 11:24

These guys helped me www.theoptimumhealthclinic.com

I am also currently reading this book and I think it has a lot of useful approaches that I am going to try.

Where to go for help?
Hoolahoophop · 16/07/2021 11:40

Thank you I will take a look at the link.

No I don't believe I have ever had my thyroid checked.

OP posts:
piglet81 · 16/07/2021 11:49

I have an underactive thyroid and the symptoms include fatigue, aches and pains, brain fog and weight gain. Common to have vitamin and mineral deficiencies associated with thyroid issues too. Mine was diagnosed a year ago and is much improved now (taking levothyroxine) but I basically felt like a sack of cold porridge and it was a huge effort to get anything done.

I would definitely go back to your GP and ask for a full range of blood tests. Hope you get some answers - it’s miserable feeling like that.

YuliaNewport · 30/07/2021 23:13

Hi , I suggest you ought to seek advice from private endocrinologist.
I have under active thyroids and I have been on Levothyroxine for numbers of years . It did not help what so ever , I discovered after 8 years that my body cannot convert T4 into T3 and therefore that medication was no help for me at all .
I went to see privately endocrinologist and he done number of test for me and helped me a lot and proscribed me me new medication call Thyroid nature , which changed my life .
My hair start grow back , I lost 15 kg and my moods have changed and I feel much much better that I used to for May years .

LiveintheNow · 30/07/2021 23:20

I suggest asking for blood tests for coeliac disease and b12 deficiency as well as thyroid, given the mouth ulcers, low iron and bowel problems. Any history of autoimmune illness in the family?

Mum6457 · 30/07/2021 23:26

I'd pay for some blood tests on medichecks and see what comes up. Then maybe ask for a private consultation with a rheumatologist. You have to manage your own care with these things.

YuliaNewport · 30/07/2021 23:53

I agree too , autoimmune conditions are very complicated and often not in the best interest for NHS because it's very costly. You need to do some investigation yourself first , at least maybe for your GP to take any notice

SpindleWhorl · 30/07/2021 23:56

I am the same when I have flare ups.

It's so debilitating.

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