Sticky Blood-Hughes Syndrome Support

Adrenaline rushes?

After being diagnosed with this a few weeks back, I've stuck my head in the sand and ignored it. Now my next appointment with the haematologist is coming up I thought I better address it and write down my symptoms to see if they fit, because the gumph the doc gave me wasn't informative and basically just said you'll get clots.(i havent) and I was convinced that the diagnosis is wrong. Now I've read the list on 'symptoms olympics' and ticked them off I'm starting to thing she is right after all :-/.

Can I ask tho if constant adrenaline rushes are a common symptom? Without beta blockers I'm just a nervous jittery lump. Also skin numbness around the face and jaw and hand tremours, - which might be part of the adrenaline I suppose.


7 Replies

Hi, a lot of us have thyroid problems alongside Hughes Syndrome/APS and at times Sjogrens or indeed other issues. Beyond other tests such as Vitamin D, B12 and Ferritin, it is vital to have expert help with your Thyroid problem. Having low cortisol can cause problems. Have you been tested for Hashimotos? Have they had a look at whether you have Thyroid antibodies? Often if Iron is low the thyroid can't take up the thyroid medication, (needs to be four hours away from any thyroid medication). Also it needs to be seen if you have too much Thyroid hormone. This is a complicated condition and needs decent help. Another issue can be out of balance aldersterone a steroid like hormone produced in the adrenals. Do you have an Endocrinologist assisting with your care? I will also add that it is a good idea to join Thyroid UK, on this same platform, their moderators are very good, and many of our members also use that forum, including myself. MaryF

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Hi and welcome. You say you were diagnosed a few weeks ago, was that after one or two positive antibody tests and may I ask which ones? Apart from the symptoms you have described what took you to your Dr to be tested in the first place? Was it the symptoms you described and did they run other tests with the antibody tests?

These symptoms do sound a bit like thyroid issues which is why I ask the questions above. Once you come back to us with your replies we will be able to give more detailed response.


I have Graves, it's been in remision for 2 years. And reynards. Last tests come back OK on the thyroid front apparently, but I don't know what they were.

When Graves was active I didn't have this adrenalin issue. It's a new symptom.

Went to gp with joint pains, headaches, chest pains, dizziness, hand tremor, adrenalin rushes, palpitations. Simular to what I had with Graves, but not the same. No hunger and exhaustion, doesn't feel the same.

Two tests 12 weeks apart came back with the high antibodies so he said APS.

Seeing heamotologist and getting results of third blood test next week. I know she's tested thyroid again.

All symptoms apart from adrenalin rushes and face numbness have now gone. Starting to wonder if I imagined them!

Just finding it hard to place the symptoms with APS. What else would cause the elevated antibodies?


Graves is an autoimmune disease and unfortunately others tend to join the party. With APS/Hughes its fairly common for them to run together but often its a under active but it could be Hashimotos which is both. Crucial that they test you for Thyroid antibodies now that you have a dx for Hughes and I hope they have done that given your history as I think your symptoms are more to do with Hashi then APS to be honest. Let us know what the new Dr says when your test results come back.

You need to see a Hughes specialist and an Endocrinologist if its Hashimotos.


If you have had two high positive blood tests for APS 12 weeks apart, then that is the criteria for a positive diagnosis of APS,



Great. Autoimmune, the gift that keeps on giving... Someone should make printable cards with autoimmune diseases rather than numbers so we can play disease bingo :-(

So definitely aps if two positives, Adrenaline rushes not one of its symptoms, so looks like something else has snuck in with it. Not familiar with Hashimotos so will have to go read up. Please tell me there is a definitive test for it with a definite yes or no not a vaigue "probably"!

Forgot to say I'm loosing weight too.. Every cloud... :-/


If you have Hashimotos it is likely you will have thyroid antibodies, often this diagnosis can be missed. MaryF


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