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Hughes Syndrome APS Forum

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Does anyone with Hughes also have adrenal problems?

stillwaiting profile image
3 Replies

Although my kidney scans came back as ok the letter from the hospital said that a small swelling had shown up on the left adrenal gland but as it is benign they have discharged me. I thought that even benign adrenal swellings had to be checked to rule out Cushings, Addisons or Conns syndromes.

Can adrenal probs be linked with Hughes?

Lynn.x.

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stillwaiting
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Tiggercat profile image
Tiggercat

Yes. It's all auto immune, but you can also get micro clots, or hemorrhages that damage the glands. The good news its that you can loose 90% of your adrenal function before you need replacement.

Derek lost his adrenal glands (bilateral infarction) during a CAPS event in 2012. We have found 1 or 2 others that have known adrenal issues. There is documented evidence that that APS can cause damage.

Check here ncbi.nlm.nih.gov/pubmed/126...

stillwaiting profile image
stillwaiting in reply to Tiggercat

Thank you so much for replying. I have read your link. I am seeing my hematologist in ten days time so I guess can bring it up then.

Lynn.x.

lloydyuk profile image
lloydyuk

Hi I agree with TC my adrenal function is non existent however it's been apparently non confirm able due to medication. Physiology however almost certInly proves the case. Similarly my problem arose as a result of CAPS. I feel lucky tho as the mortality rate is veryon it's own let alone the mortality rates of the individual organ failures etc such as brain haemorrhage, kidney haemorrhages adrenal haemorrhages and electrolite imbalances such as extremely high potassium and low sodium. I hope all goes well I'm sure it will. Do your best to keep positive it's surprising what that can do.

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