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Autoimmune disease

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Any insight on these symptoms?

18 replies

patsypam · 24/11/2025 11:10

Hello -

I’ll start by saying, I am on the pathway to seeking professional medical help. I have a face to face appointment booked for next week with my GP. But curious if this community could provide any informative insight of these symptoms I’m experiencing.

Im a 33/F and I’m 12 months post partum, although some of these symptoms span back to my late teens, however naively I was young and silly and ignored and dismissed many for a long time.
Now I’m a mum, I feel I need to start taking charge of my health better for my child and also because of the effect it’s having on being the best mum I can be.

I’ve listed them below:

Almost constant unexplained joint pain throughout my body. Causes a burning sensation within the joint. - mainly hips, knees, chest, feet, hands and elbows
I Will literally wake up with a new pain.

Unexplained swelling of limbs - especially my feet and hands.
As a teen I used to get this quiet badly in my legs too, they’re randomly swell and go rock solid, it would last a couple of hours and then go down, so Everytime I would make a GP appointment I couldn’t actually show them.

Unexplainable Itchy skin especially in my lower legs (often so intense to the extent I make them bleed) but also over my arms and face and chest.

Feeling of a all over body rash but no visible rash

Burning sensation in my muscles.

Repeated episodes of sharp chest pain, especially worse with deep breaths/coughing. It can sometimes just be painful to move of straighten up.

Heart palpitations/pains. when I say pains, the best way I can explain it is as if my heart has a cramp, I feel I have to sit still for a moment and hunch.
Have been known to get randomly very out of breath with just a brisk walk which will cause heart pains and sweating, but this is very occasional, not always.

Extreme fatigue even with 8-9 hours sleep (my baby is a great nighttime sleeper - thank god!) - but I feel like I could sleep all day.

Almost nightly Night sweats - I wake up soaking and then I’m freezing. This will happen several times throughout the night.

Constant dry watery eyes and can be quiet puffy/swollen eyes when first wake. (am using eye drops)

Reoccurring Mouth ulcers, they’re more like tiny sore spots all along the sides, tip and bottom of my tounge. I don’t really get them on my gums.

Frequent bouts diarrhoea

Pretty bad Hair loss/thinning - scalp can feel quite randomly irritated, as if I’ve had some form of treatment put on my head but haven’t.

Dizziness

Constant swollen glands in right side neck.

Flu like symptoms that will pass quite quickly.

Elevated white blood cell count a few times with no explanation.

Queries about previous blood tests concerning liver - non drinker (haven’t had a drop of alcohol since December 2023 and even that was the first time in a year) - GP queried my drinking and I very much felt like they didn’t actually believe I was a non drinker.

Lots of broken capillaries with no obvious cause (have had them previously treated, came straight back) specifically on my chest and on my face and arms.

in recent years, (maybe the last 5-6) a sudden sensitivity to sun. I have olive skin, and would very very rarely burn, and would always turn brown pretty quickly in the sun. However recently I seem to burn very quickly.

Very curved toenails - frequent ingrown toenails.

Often feel very cold. (Husband comments on that frequently) especially my hands, feet and nose.

I apologise that list is quite extensive. Some may not be in any way relevant but I thought it was impostant to write it all down. I will also go to my GP with this list. I’m feeling a little irritated they haven’t booked me in for a blood test now as I feel like whatever is going on currently I’m right in the midst of it and feeling awful, so the blood work will hopefully give a pretty clear picture. The appointment next week is just a face to face consultation. I have requested blood work and ANA testing.

Bascially hoping for any helpful advice to go armed to my GP with. Anything specifically to request. Anything to focus in on?
and also, any ideas as to what could be going on… does this auto immune to you guys?

thank you in advance!

OP posts:
LittleGreenDragons · 24/11/2025 11:57

Lupus.

Although low iron can also cause fatigue, heart palpitations, breathlessness and restless legs so get that checked out too. Most women seem to hover around 30 but you need to be around 70 for healthy hair growth. Check your Vit B12, Folate and Vit D at the same time.

patsypam · 24/11/2025 12:51

LittleGreenDragons · 24/11/2025 11:57

Lupus.

Although low iron can also cause fatigue, heart palpitations, breathlessness and restless legs so get that checked out too. Most women seem to hover around 30 but you need to be around 70 for healthy hair growth. Check your Vit B12, Folate and Vit D at the same time.

Lupus is exactly what I was thinking…. Sadly.

Thank you. Do I need to ask for a specific blood test to check the vitamin deficiencies or would that be within the full blood count. (This is if they even put me forward for blood work!) I do t have the upmost faith in GPs sadly.

OP posts:
platform2 · 24/11/2025 12:55

Sounds like your thyroid to me.

patsypam · 24/11/2025 13:19

platform2 · 24/11/2025 12:55

Sounds like your thyroid to me.

I actually had my thyroid checked earlier this year, after pregnancy. And all came back fine. Xxx

OP posts:
Realisation14 · 24/11/2025 14:03

Have you had a coeliacs screening? Mouth ulcer, diarrhea, fatigue, dry eyes are all symptoms.

TappaMcFeety · 24/11/2025 16:05

It could be any number of autoimmune illnesses as a lot have very similar symptoms and there’s a lot of crossover, but I would be more concerned about the drenching night sweats and enlarged lymph glands - have you had any weight loss?

You need an Ana blood test plus a full blood count and hopefully your GP will go from there.

patsypam · 24/11/2025 19:03

Realisation14 · 24/11/2025 14:03

Have you had a coeliacs screening? Mouth ulcer, diarrhea, fatigue, dry eyes are all symptoms.

I had testing done for coeliacs back in 2024, which came back clear. (Was due to reoccurring episodes of a very bad tummy) x

OP posts:
patsypam · 24/11/2025 19:06

TappaMcFeety · 24/11/2025 16:05

It could be any number of autoimmune illnesses as a lot have very similar symptoms and there’s a lot of crossover, but I would be more concerned about the drenching night sweats and enlarged lymph glands - have you had any weight loss?

You need an Ana blood test plus a full blood count and hopefully your GP will go from there.

I’ve been actively trying to loose weight this year, due to gaining a fair bit In pregnancy, but it hasn’t come off quickly by any means. Back in 2023/start of 2024 I lost quite a lot of weight unintentionally. This was due to frequent issues with diarrhoea / struggling to eat. They did blood tests then and stool samples. Stool samples always came back clear, the blood tests on all occasions showed High WBC, monocytes and nurophilis count aswell as something to do with my liver but they never choose to investigate it further.
oddly when I became pregnant a lot of my symptoms disappeared, now post partum they’re ramping up again but with less tummy issues than before.

OP posts:
Devilsmommy · 24/11/2025 19:08

patsypam · 24/11/2025 13:19

I actually had my thyroid checked earlier this year, after pregnancy. And all came back fine. Xxx

I had a lot of those symptoms myself and had an overactive thyroid and also all my vitamin and folate levels were through the floor. You need a full blood work up done asap

OdiIsNeverMean · 28/11/2025 12:09

Hiya

I'm sorry you're going through all of this. It's brutal.

I can't give you anything to look into but some of our symptoms are very similar. I posted a while back and got some good insights but nothing conclusive. I'm not back to the consultant till April but they've loosely put a connective tissue disorder sticker on me.

This is my post:
https://www.mumsnet.com/talk/autoimmune_disease/5427162-does-anyone-have-any-insights-on-my-symptoms

It might help you explore some more things

Does anyone have any insights on my symptoms | Mumsnet

Hello all I’m recently discharged from hospital and looking for some insights if anyone can share as I had lots of tests but they’re stumped and ever...

https://www.mumsnet.com/talk/autoimmune_disease/5427162-does-anyone-have-any-insights-on-my-symptoms

patsypam · 28/11/2025 13:06

OdiIsNeverMean · 28/11/2025 12:09

Hiya

I'm sorry you're going through all of this. It's brutal.

I can't give you anything to look into but some of our symptoms are very similar. I posted a while back and got some good insights but nothing conclusive. I'm not back to the consultant till April but they've loosely put a connective tissue disorder sticker on me.

This is my post:
https://www.mumsnet.com/talk/autoimmune_disease/5427162-does-anyone-have-any-insights-on-my-symptoms

It might help you explore some more things

Thank you for sharing that with me, funnily enough I’d actually read through your post and several others. Which lead me to posting under this thread as a lot of my symptoms rang true with auto immune symptoms. I’m sorry to hear you haven’t got a conclusive diagnosis yet, have they started you on any treatment to help?
I’ve got my GP appointment next Thursday - hoping she’ll get the ball rolling and do the bloods I’m requesting. X

OP posts:
Winter2020 · 28/11/2025 13:16

I think you should ask for bloods to look for deficiencies but I would also consider inflammatory bowel disease (crohn's or ulcerative colitis).

As well as your blood tests looking for inflammation there is a stoole test called "Calprotectin" that shows inflammation in the bowel that can be an indicator.

Endoscopy is used to confirm I believe.

My son has Crohn's and while he doesn't get joint pain I don't think I have seen it listed as a possible symptom I'm sure.

Good luck in your search for answers.

TheSpottedZebra · 28/11/2025 13:22

The fact that your symptoms lessened during pregnancy then came back after is very relevant too, as the immune system has to 'quieten down' in order to allow for pregnancy. Make sure you mention all of this.

Winter2020 · 28/11/2025 14:06

Winter2020 · 28/11/2025 13:16

I think you should ask for bloods to look for deficiencies but I would also consider inflammatory bowel disease (crohn's or ulcerative colitis).

As well as your blood tests looking for inflammation there is a stoole test called "Calprotectin" that shows inflammation in the bowel that can be an indicator.

Endoscopy is used to confirm I believe.

My son has Crohn's and while he doesn't get joint pain I don't think I have seen it listed as a possible symptom I'm sure.

Good luck in your search for answers.

My last sentence is confusing sorry.

My son doesn't suffer joint pain to my knowledge, but I do think I have seen it in symptoms lists.

patsypam · 28/11/2025 14:09

Winter2020 · 28/11/2025 13:16

I think you should ask for bloods to look for deficiencies but I would also consider inflammatory bowel disease (crohn's or ulcerative colitis).

As well as your blood tests looking for inflammation there is a stoole test called "Calprotectin" that shows inflammation in the bowel that can be an indicator.

Endoscopy is used to confirm I believe.

My son has Crohn's and while he doesn't get joint pain I don't think I have seen it listed as a possible symptom I'm sure.

Good luck in your search for answers.

Thank you for this. I had the calprotectin test a handful of times before my pregnancy, all determined it wasn’t Crohn’s or otherwise. Virtually no inflammation in the gut. Xxx

OP posts:
patsypam · 28/11/2025 14:10

TheSpottedZebra · 28/11/2025 13:22

The fact that your symptoms lessened during pregnancy then came back after is very relevant too, as the immune system has to 'quieten down' in order to allow for pregnancy. Make sure you mention all of this.

That’s really interesting! Thank you for bringing that to my attention. Xxx

OP posts:
Om83 · 28/11/2025 14:21

Many of your symptoms would be caused by low ferritin (iron) the reference range is not a great guide- many labs the low cut off is still around 12ug/L but for optimal health and treat many of the symptoms you describe would need to be around 80ug/L so often gets missed in routine blood tests as it doesn’t get flagged. Typical is of course the fatigue, chest pain, palpitations, itching skin and scalp, hair loss and muscle pains.

given the digestive symptoms and mouth ulcers, I’d suggest you get tested for coeliac disease- mouth ulcers were my daughters main symptoms ( as well as fatigue) and this can cause also cause the joint pain and swelling in many coeliacs, as well as a variety of nutritional deficiencies including iron due to malabsorption. You need to make sure you are eating plenty of gluten (equivalent 2 pieces of toast a day) to ensure the tests are accurate and even if they come back positive, must carry on eating gluten until confirmed by gastroenterologist incase they need to do more investigations. Initially they would test for IgA, TTG and EMA as a typical coeliac screen.

There are so many symptoms of coeliac- this is just a few listed on coeliac U.K. website https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/?&&type=rfst&set=true#cookie-widget

the sun sensitivity could suggest lupus.

Coeliac disease symptoms

Symptoms of coeliac disease may include: diarrhoea, nausea, vomiting, bloating, anaemia, tiredness, mouth ulcers. Take Coeliac UK’s free online self-assessment to find out if you should be tested for coeliac disease

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/?&&type=rfst&set=true#cookie-widget

Om83 · 28/11/2025 14:26

Just read your other post saying you were tested for coeliac in 2024. I would request an endoscopy if you haven’t already to see what is actually going on in your gut- sometimes the coeliac test can be a false negative. You could also check if they tested your IgA in 2024 as this can be commonly low in those with coeliac and if low then the TTG will also be falsely low giving a wrongly negative diagnosis

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