Sticky Blood-Hughes Syndrome Support
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Happy New Year, 3 years and still wondering

Happy New Year everyone. This is just a quick update and to see if anyone else has been in the same boat. Since my last post I have had a Endometrial ablation, which has worked 50%. It has made life somewhat more bearable.

I was referred to the Nuerology department in April as my memory has been progressively getting worse, as has my pins and needles. A change in Medication from Fragmin to riveroxaban and back and then back onto riveroxaban hasn't alleviated any of the symptoms. The pins and needles are just a daily occurrence that last now for hours. Unfortunantley Nuerology has twice lost my ref feral from my specialist, so they have now given me an emergency appointment next Tuesday, so fingers crossed for some answers!

I would like to know if any others are in the same boat as myself.? I have been diagnosed with APS now for three years, and I seem to be getting other symptoms. I haven't had a blood clot or PE for over a year so that is great, but the tiredness, joint pain and memory loss is at its worst, something I never experienced after my first clot.

any help would be appreciated. I have recently increased my working hours over the past two months and I literally feel drained half of the time. It is getting very frustrating. I am trying to keep fit, active and a low BMI to help with my illness but I don't seem to get it at a stable level, it dips daily.

Any ideas or suggestions?

I am under Dr lewis at Nevile hall, who is brilliant, and I am seen in-between fortnightly and monthly so they are trying everything that they can.

Thank you for reading:)


4 Replies

Well done for keeping up with work. That is great with all you have to contend with and something I would find impossible so perhaps lessening your hours?!

My diagnoses came finally in a round about way via neurology first diagnosed with dystonia and Chorea ie involuntary movements

I asked for referral to rheumatologist after learning about blood results via Google to then be diagnosed with APS

Neurologist then said I had small vessel disease after MRI as Aps had damaged me without any treatment

Early diagnoses and treatment is key

Just had ablation in Nov and agree that it has helped as warfarin treatment made a bad situation worse.

I am now under the lupus centre at guys and St Thomas hydrochloquine has been added to the regime

Well done on the fitness stuff I aspire to that hope you feel better soon

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HI alongside your Hughes Syndrome/APS it is vital that you check your Vitamin B12, Vitamin D and your iron levels any of these being low will make you feel a lot worse. Also make sure your Thyroid is regularly checked and be aware that the TSH test if far from reliable. A slow Thyroid not treated will make you very tired. MaryF


I have had all of the above checked. My iron and B12 are forever low even though my diet is good. I used to have b12 injections as well. I have just been checked for arthritis and thyroid. It all came back negative. That is why I am at such a loss as to why I feel so ill:(


If you iron or B12 remain low you perhaps need your B12 injections back and certainly probably on medical advice iron supplementation. Is your D ok? Unfortunately the TSH test usually used for Thyroid in my opinion is pretty useless I did private tests, many of them and it showed up. I hope you can get the help you need, best of luck. MaryF

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