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Original poster

Having lots of weird symptoms, what could it be?

12 replies

Raena · 01/04/2023 22:43

I’ve had severe fatigue issues for several years now which often leaves me unable to stand, all blood tests for this came back normal for the first few years. I started to gain weight as my activity levels went down and now have a BMI of 31. I have a weird, dry red rash covering most of my body that isn’t responding to any treatment from the GP. I wake up feeling awful, really dehydrated and groggy and heavy. I’ve started having stomach issues, either pain or an upset stomach or constipation and my bloods recently showed that I’m folate deficient. I’ve had a hard lump in my neck/lymph node for about 5 years that just won’t go away (I’ve been to 4 different Doctors about it and they’ve all told me that they can be sure it’s not cancer). My blood sugar can drop rapidly out of nowhere and I get really faint/feel sick, I also feel really ill if I have anything sugary but have no markers for diabetes. My joints and muscles ache if I overdo it and leave me feeling like I’ve been hit by a train when all I’ve done is a bit of cleaning or shopping. My inflammation and immunoglobulin blood results were slightly raised a few months ago but after further tests my GP isn’t concerned. I had a H. Pylori test too which came back negative.

What could possibly be going on? My GP is wonderful and always happy to send me for blood tests when a new symptom appears but I’m sick of bothering him with it all now. I’m 25 and have had most of these symptoms whilst on contraception which stops my periods, whilst on no contraception at all and also whilst pregnant so I doubt it’s menopause related. Any ideas?

OP posts:
Chipshopflipshop · 01/04/2023 22:45

Graves disease maybe? Have you been tested for autoimmune disorders such as lupus? Had thyroid tested and scanned?

Original poster
Raena · 01/04/2023 23:03

Chipshopflipshop · 01/04/2023 22:45

Graves disease maybe? Have you been tested for autoimmune disorders such as lupus? Had thyroid tested and scanned?

I haven’t had any scans done but I’ve probably had every blood test available at this point. ANA to check for autoimmune markers, lipid profile, blood counts, thyroid, liver function, ferritin, all vitamins, lactose, diabetes markers, kidneys, inflammation markers, glucose, CRP, electrolytes, cholesterol, several different hormone tests, probably others that I can’t recall.

I have wondered about Lupus but I don’t have a rash on my face and I assume that my Doctor will have tested for this if there’s a test? My biggest fear is cancer because of the hard lump in my neck but they all seem so sure that it can’t be that.

OP posts:
kingsleysbootlicker · 01/04/2023 23:35

Have you been tested for Coeliac disease?

Original poster
Raena · 01/04/2023 23:46

kingsleysbootlicker · 01/04/2023 23:35

Have you been tested for Coeliac disease?

I’m not too sure, I didn’t have any stomach issues up until July ‘22 though and I assume that stomach issues are the first to show? I did have slightly raised Anti-nuclear antibodies on my first round of tests in 2020 but the rheumatologist I was referred to said that they weren’t raised enough to be seen as abnormal so should be dismissed.

I’ll add coeliac to my list of diseases to look in to, thank you.

OP posts:
Xrays · 01/04/2023 23:55

Not everyone with lupus has the rash on their face or in fact any rashes. I don’t and I’m diagnosed with lupus. There are specific blood tests they can do but they don’t do them as part of a general blood test.

kingsleysbootlicker · 01/04/2023 23:56

Some people don't get any stomach issues with it at all. But it can cause a rash, so you could google some pics and see if it matches yours

Ladybird69 · 02/04/2023 00:02

I’ve been Googling the same symptoms as I have the same including the strange red rash. Plus Sore throat , sore tongue, palpitations, weakness, no periods, lost more than half my lovely curls and more. I’ll try and remember what it came back with, sorry suffer from severe brain fog. It came back with something to do with b12 deficiency, anemia, folic deficiency, vit d deficiency and diabetes as that’s what I’ve been looking into as I’m practically housebound because of the symptoms. You have my sympathies Op.

bunnyrabbitsandbutterflies · 02/04/2023 00:08

I'd put money on it being vitamin B12 deficiency. This was me about 6 years ago! Ask your GP for a copy of your blood results, according to Dr Chandy (www.b12d.org) your levels need to be above 1000 before symptoms improve!

MintMa · 02/04/2023 00:24

Vasculitis? Or something else autoimmune? Have you been referred to rheumatology I'd ask for that as a minimum but also a ct/ultrasound of your stomach/abdomen region.

WishingMyLifeAway · 02/04/2023 02:10

What thyroid tests have they done?
Really sound like hypothyroidism. Often just a TSH test is done which doesn't identify all types of hypothyroidism. You can feel terrible in the very early stages of autoimmune thyroiditis too way before your thyroid levels are "abnormal". Folate and other vitamin deficiencies go hand in hand with hypothyroidism. And you get all sorts of weird and wonderful symptoms. What are your periods like? Temperature regulation?

The slow progression is also indicative. It took years from me starting to feel I'll to get a diagnosis. And that's fairly common. Crushing fatigue was one of the first symptoms (that waking up groggy and exhausted really resonates) extremely heavy periods, constipation, dry skin, low ferritin. Also had weird tingling and crawling sensations, plus issues with mood. Developed over time: rosacea, poor temperature regulation, weight gain etc etc etc.

Coeliac is also a strong contender and would also cause a lot of those symptoms. Stomach symptoms aren't always apparent.

I was folate deficient a year or so ago and that makes you feel bloody awful so do make sure you get that sorted so it doesn't muddy the waters when trying to work out what is going on.

I would also recommend getting a full thyroid panel done (you'll probably need to do this privately). TSH, FT4, FT3, thyroid antibodies. And then post the results on the Thyroid U.K. forum on Health Unlocked.

Make sure you have thyroid tests early morning and fasting. No biotin for at least 5 days before the test as it can make the results incorrect.

If you are having a coeliac test make sure you keep eating plenty of gluten for at least 6 weeks before or you may get a false negative.

icclemunchy · 02/04/2023 03:11

I was also going to suggest coeliac disease. The symptoms can be really vauge and not always stomach related

BatshitCrazyWoman · 02/04/2023 07:01

WishingMyLifeAway · 02/04/2023 02:10

What thyroid tests have they done?
Really sound like hypothyroidism. Often just a TSH test is done which doesn't identify all types of hypothyroidism. You can feel terrible in the very early stages of autoimmune thyroiditis too way before your thyroid levels are "abnormal". Folate and other vitamin deficiencies go hand in hand with hypothyroidism. And you get all sorts of weird and wonderful symptoms. What are your periods like? Temperature regulation?

The slow progression is also indicative. It took years from me starting to feel I'll to get a diagnosis. And that's fairly common. Crushing fatigue was one of the first symptoms (that waking up groggy and exhausted really resonates) extremely heavy periods, constipation, dry skin, low ferritin. Also had weird tingling and crawling sensations, plus issues with mood. Developed over time: rosacea, poor temperature regulation, weight gain etc etc etc.

Coeliac is also a strong contender and would also cause a lot of those symptoms. Stomach symptoms aren't always apparent.

I was folate deficient a year or so ago and that makes you feel bloody awful so do make sure you get that sorted so it doesn't muddy the waters when trying to work out what is going on.

I would also recommend getting a full thyroid panel done (you'll probably need to do this privately). TSH, FT4, FT3, thyroid antibodies. And then post the results on the Thyroid U.K. forum on Health Unlocked.

Make sure you have thyroid tests early morning and fasting. No biotin for at least 5 days before the test as it can make the results incorrect.

If you are having a coeliac test make sure you keep eating plenty of gluten for at least 6 weeks before or you may get a false negative.

I agree with this. I have Graves' Disease (autoimmune overactive thyroid) and there's huge overlap with the symptoms of both over and underactive. My thyroid results weren't even hugely 'over' but obviously really not right for me personally, and I felt like I was dying. Had to cut hours at work etc

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