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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

I have symptoms of autoimmune but bloods all normal range?

35 replies

budgetingnovice1993 · 11/09/2023 16:26

LH 26.8
TSH 0.59
FSH 10
Free T4 11.9

36 year old female. I have had symptoms of thyroid balance and PCOS. I cannot get anywhere with GP as my bloods are within normal range. Why do I feel so lousy if everything ok? Why do I have adult acne, dry skin, digestive problems, joint pain, mood swings, swollen lymph nodes, hirsutism, anxiety, digestive issues etc if all ok?
Any advise welcome.

OP posts:
Fullspectrum · 14/09/2023 06:02

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PerspiringElizabeth · 14/09/2023 06:10

Ask to be referred to a rheumatologist.

I was referred, saw him, he was sooooo much more interested and validating and that’s the first time I thought maybe I wasn’t just going mad!

The next time I saw him I had a 9 month old baby (wasn’t even pregnant at initial appt) so that gives you some idea of the wait/road ahead.

First time I saw him he referred me for a chest X-ray, bloods, and lip biopsy - that took the longest, about a year I think (and is still numb 18 months on!).

There are hundreds of autoimmune diseases so one could very well fit your symptoms. I am not on any medication yet thankfully. Really working on getting my inflammation down.

GPs haven’t even really heard about my autoimmune disease - they are general practitioners and you need a specialist!

lapsedbookworm · 14/09/2023 07:24

Al@budgetingnovice1993 oh wow. I hope she is doing ok with it. Yes I fell everyone to make sure they go to their eye tests now! My friend is a diabetes nurse and says opticians are often the first to notice someone has diabetes too

lapsedbookworm · 14/09/2023 07:26

Also @budgetingnovice1993 it's relevant you have a close family member with an autoimmune disease as there is a genetic link (not so much to MG but just people with relatives with an AI condition are more likely to have one)

PerspiringElizabeth · 14/09/2023 07:32

Yes the genes load the gun and environment triggers it, as the saying goes!
For example environmental factors for me: glandular fever, Bali belly, physically traumatic labour, being overweight. All shown to contribute to development of an autoimmune disease, if you have the genes. Might provide some context for you op, dunno if you can think of anything like that that could have triggered things off for you!

lapsedbookworm · 14/09/2023 07:55

Yes, similar for me @PerspiringElizabeth ! I think it was medication I was prescribed for PTSD that triggered mine , but definitely got AI genes in the family (my children both have several AI conditions)

OneMoreCookieMonster · 14/09/2023 08:33

TheMountainsCall · 12/09/2023 08:08

Autoimmune is often things like ANA, ANCA, that sort of thing.

This you need an autoimmune blood panel

Lillygolightly · 14/09/2023 08:33

Hi OP,

Firstly you have my sympathy, I had symptoms for a good 6 years before finally being diagnosed and like you all my blood work and results kept coming back normal. It has taken until my symptoms worsened and blood work finally became abnormal to finally get on a treatment path and I am still awaiting further diagnostic testing.

I have positive thyroid antibodies and raised TSH which indicates autoimmune hypothyroidism, hashimotos. I’m now on Levothyroxine and still at the stage of finding the right dosage I am also awaiting a more in depth ECG as my initial ECG was abnormal. I still suffer with symptoms and awful fatigue but I’m now at least hopeful that now I am on a pathway that things will improve.

There is nothing more frustrating than feeling unwell and not being able to get help. I honestly at times really wondered if it was all in my head but of course it wasn’t. The total disappointment when tests came back normal, I mean you would typically wish for normal results but not when you’re feeling so awful and just want answers as to why! Autoimmune conditions can be so tricky to get diagnosed.

TheNoonBell · 14/09/2023 10:03

Have you been checked for Lupus? That is about the age it comes on and some of your symptoms do look a bit similar.

PerspiringElizabeth · 15/09/2023 16:50

lapsedbookworm · 14/09/2023 07:55

Yes, similar for me @PerspiringElizabeth ! I think it was medication I was prescribed for PTSD that triggered mine , but definitely got AI genes in the family (my children both have several AI conditions)

Both me and DH have lots of autoimmune problems in our families - I fear our kids are fucked!!!

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