Shedding some light on my results - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,353 members10,541 posts

Shedding some light on my results

Kittybaker profile image
3 Replies

I posted yesterday my results in the thyroid Uk forum. I had private bloods done with Blue Horizon as my weight gain (from 145-173lb in 4 months) puffy face. Joint pain, aches, sleep problems, feeling tired, emotional all pointed to thyroid( we have a family history of it, mum had Graves now under active, nan and Great nan underactive)

I am on b12 injections for life.

Riveroxaban and have been on that on and off for two years. Previously fragmin. Allergic to warfarin and that caused my initial episode with Hughes to result in the surgery to remove the clot that went from my knee to my groin.

I was diagnosed with Fibromyalgia in Jayne in believe.

I just want to know why my body seems to deplete B12. The results indicate low folate, low vitamin D,and high CPR.

Does anyone else have this? How did you over come it?

I have been checked for pernicious anaemia and coeliacs all came back negative.

I am at my wits end now, I suffer from pins and needles for hours each day, I have started suffering spasms in my back, the constant tiredness and disturbed sleep are making me feel so drained.

I know Hughes/Fibromyalgia has so many side effects but nothing se me to eradicate the onngoing ones.

I only see my specialist Sarah Lewis at Neville every 6 months as from the team there's point of view I am not clotting so I am better.

I don't know if it's worth seeing someone private to help? I feel lost with it at the moment.

Written by
Kittybaker profile image
Kittybaker
To view profiles and participate in discussions please or .
Read more about...
3 Replies
MaryF profile image
MaryFAdministrator

Hi, you definitely need to keep any eye on your thyroid, your vitamin D is low which will make you more inflamed, you need to get it up to at least 75, and your folate is low. If trying gluten free it needs to be strictly so and for a long period of time, people can be considered as no Coeliac gluten intolerant like myself. There is a forum on here for Pernicious Anaemia, I would join that group as they will be more expert on how often you need your B12 injections. Blue Horizon for testing is a good move, I use them regularly. Having low vitamin D will make you feel awful, as well as the B12 being off kilter. Another thing, it is a good idea to take magnesium if on high doses of Vitamin D, but do please seek medical advice before making any changes. MaryF

Kittybaker profile image
Kittybaker in reply to MaryF

Do you know what can cause the depletion of the vitamins in the body?

I just want someone to tell me why my body doesn't keep them at the level they should be.

Thank you for the response I am just frustrated as too why this happens?

Thank you and Happy New Year

MaryF profile image
MaryFAdministrator in reply to Kittybaker

Most of the UK is short of vitamin D, so no surprise there, and perhaps when people are ill they are inside more etc etc. Regarding B12 depletion, see below, quite a common form, plus it can drop if the iron drops, but can also do this as a stand alone condition: medicinenet.com/pernicious_...

low iron, not uncommon with women: nhs.uk/Conditions/Anaemia-i...

I also enclose this, as this is a known cause also: archivesofrheumatology.org/...

MaryF

You may also like...

dizziness and light headed

years ago and Hughes- 2 years ago. Recently is was discovered that my potassium was very low and...

Haematologist still says my migraines have nothing to do with APS/Hughes

years and have migraines when my INR is low. I pointed out the connection to 7 doctors including...

Some advice for a newbie please?

positive' lupus anticoagulant results but my specialist thought my very poorly thyroid was probably...

got some interesting news

they get info from people other than in the states, she said they do but not to much from other...

Got some tests results back...

missed one...nurse copied results more than once and interpretative information from the lab all...