Sticky Blood-Hughes Syndrome Support
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More conditions to add to the list

Following my rheumatologist appointment yesterday, at Manchester

Royal Infirmary, the dr gave me the results of several tests done over the last 3 months.

A recent ultrasound scan shows a nodule on my thyroid, x-rays confirm osteoarthritis in both hands and a bone scan confirms early stages of osteoporosis.

It was really a lot to take in at one very short appointment. The Dr is arranging referral to a thyroid specialist and is writing to my GP to start meds for for osteoporosis.

He recommends wax treatment for my hands and has taken lots of blood to test my liver complement and vitimin D levels.

He did say it is lucky my APS and Lupus is quiet at the moment !!

Can anybody give me advice on things I can do going forward?

4 Replies

Hi, I am glad this has all been picked up, and so often the Thyroid gets overlooked, an Endocrinologist will work out what to do re your Thyroid both in terms of medication and the nodules. It is really good that they are testing your Vitamin D levels and also you will probably receive some supplementation for your Osteoporosis, As you are in a cycle of blood tests get them to look at our vitamin B and Iron also if they have not done so. Also ask them about some physio and some guidance re weight bearing exercise! Let us know how it goes. MaryF


Thank you Mary, the thyroid problem and the osteoarthritis was only picked up because I made a fuss at my last appointment and threatened to go to pals and make a formal complaint if my concerns were not taken seriously.

I had to ask my GP to arrange a bone scan, after I broke a rib cleaning the shower, the GP gave me the results and asked me to talk to the rheumy about them.


Unfortunately you tell an all too familiar tale, well done on seeing it through to the end! I hope you get some good results with this! MaryF


As we all know thyroid and Hughes often run together. My thyroid was the first of my autoimmune conditions to show up although the APS was the primary condition and had been lurking for many years.

I would not only get them to check your B12, ferritin and Vit D as Mary suggests but I would think about Gluten too. I don't know if you have had any stomach issues but sometimes you don't need to have them necessarily to still have or be gluten intolerant which can do so much damage to so many parts of your body especially the brain. Prof Hughes always advises his patients to not eat it but if you are suspicious you may be celiac don't stop eating it before you have been tested. There is also a very strong link between celiac disease and Hashimotos which is autoimmune thyroid disease.

With regards to your osteoporosis if you are only borderline then that is probably as a result of the thyroid not being treated and once it is it may well improve that. I was a few years back when my thyroid was all over the place but now having got it back on an even keel and despite heparin my scans have remained stable.

You will now have to become your own advocate to keep all of this joined up as the endocrinologist may well not have too much knowledge of the APS so you will have to gently guide. It will be a juggling act but I'm sure you will manage it. good luck and keep us posted.


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