Sticky Blood-Hughes Syndrome Support

Shedding some light on my results

Shedding some light on my results

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.

4 Replies

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


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


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:

low iron, not uncommon with women:

I also enclose this, as this is a known cause also:



As Mary says you are low in Vit D. Also your B12 even at the dose its at I would not consider to be high enough especially if you are supplementing. Are you injecting B12 if not you should be and at least every 2 weeks to get you up to a good level. I would also say that although you have tested negative to CD you should be GF as the will help inflammation and if you are a person that has it but the tests have failed you, this will help there too as you are obviously anaemic so have an absorption problem. Do you have any gut issues?

I would also up the iron as you should be around 100, use something like Spatone which you can get in boots. Its very gentle. Your Thyroid meds need iron so it will help that too. Please read this thread:

What advise did you get on Thyroid UK? Your FT4 and FT3 levels seem optimum to me.

Your symptoms all point to pernicious anaemia to me, I would ask for a referral to a dietician and gut specialist to repeat CD tests.

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