New to this site

No diagnosis of Hughes...i came across it and when i read more about it I thought getting other peoples opinions maybe of help.

Iv Hashimotos, underactive thyroid and crohns. Been feeling quite poorly for a while with muscle pain and weakness, fatigue, horrible brain fog and confusion, heat intolerance which is new to me, palpitaions and stopping breething when i am asleep amongst others.

I had some bloods taken a while ago and one of the tests was showing out of range,,this had never shown before and when i looked it up it could indicate sticky blood. Sorry i cant remmeber the name of the blood test.

Does my story sound familur to anyone....your advice and suggestions are greatly appreciated.

Thanks

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  • Thyroid and celiac disease often go hand in hand with APS and I have read recently that many people who have Crohns also have CD or NCGS or it can be a misdiagnosis.

    Id be interested to know more about your test because without that its really difficult to advise anything. Your symptoms are common to a lot of diseases including the ones you have been diagnosed with.

    Are you eating Gluten? If so my first suggestion would be to either think about being tested for CD or if you don't want to go down that road perhaps do your own little trial and cut it out for a couple of weeks and see how you feel. My gut instinct (sorry no pun intended) is that you should not be eating it. I would also ask the Dr for a copy of that test and follow that up.

  • Hi and thanks, can you tellme what NCGS is. Also the blood test i had was an elevated Pits test which can indicate sticky blood.

  • NCGS is Non Celiac Gluten Sensitivity. The link I am attaching explains the Pit Blood test and I don't think its been done in your case because of Hughes Syndrome, more likely because of your other conditions. If the test came back abnormal I don't think it would indicate APS it could indicate other reasons.

    As has already been mentioned, to see if you have Hughes Syndrome (APS) you need to have specific tests to see if you have the antibodies which cause the blood to clot. These are LA (Lupus Anticoagulant) nothing to do with Lupus, aCL (anti-cardiolipin antibody) and anti-B2GP1 (anti-beta2 glycoprotein1).

    medicalhealthtests.com/bloo...

  • Thanks i will have a look at the link.

  • Hi there, if sticky blood was mentioned, the tests which will have been done are - hughes-syndrome.org/about-h... You need to ask whoever it is that suggested sticky blood to you if they have done this, and also the results, as it is absolutely crucial that you have the right medical advice and support. If they have mentioned it to you, as you said on TUK, then this just needs some fine tuning! MaryF x

  • Hi and thanks, the blood test whcih i had was an elevated pits testwhich indicatedsticky blood.

  • Ok will have a look at the list and make sure you push for a referral to somebody in the area off the list above. This will make things easier for you. MaryF x

  • Thanks...

  • When I first was being investigated they thought I may have hashimotos but it did turn out to be sticky blood, I'm guessing the symptoms are similar. A lot of people with APS do have thyroid problems too. I have not experienced heat intolerance, heat makes me feel better but we are all different.

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