daughter and hughes

hi all im new to this site im writing for my daughter she is 25 and for a long time now has not been at all well i have autoimmune thyroid disease and fibromialgia i thought she could have thyroid trouble went to endo,s could find nothing wrong other than a positive blood test for sticky blood then we got to see a rheumy she was aching all over her knees hurt her hips are killing her at the moment had blood tests there which showed another positive. rheumy then sent another blood test form not telling her why this needed doing anyway that blood test was positive and after phoning and phoning to try find out what was going on she sent a letter to say she was marginal for sticky blood and would tell her more when she saw her again in clinic which we have so far no appointment for. i am so worried that if this is left to long could it b dangerous for her, her memory is not good she told our gp said he wasnt worried. any ideas on what we should do next she has a seven year old son as well thankyou x

7 Replies

  • Hi Lifeback,

    First of all I must say that she is very lucky to have a mother like you who understands that you must go on fighting for a solution.

    We have all here APS and most of us have had to "fight" to get an APS-doctor. The Rheumatologist she has seen (the right doctor for APS) is obviously not an APS-doctor especially if you saw her long ago and she has done nothing.

    Where do you live? Get copies of the bloodworks done. Thyroid disease are often linked together with APS.

    Please let us hear how you manage.

    Best wishes from Kerstin in Stockholm

  • Hi, You say you have thyroid disease and fibromyalgia. Have you been tested for Hughes? We are not doctors here but if I were you, i would also test for Hughes.


  • Hi lure2 thanks for reply no i havent been tested for Hughes will have a word with rheumy when i go. sorry another question my daughter is due to go to dentist and have some teeth removed is this wise until we know whats going on x

  • I am not the right person to answer that question, We are not doctors here and cannot answer medical questions.


  • Sticky Blood is often another name for Hughes or APS (Antiphospholipid syndrome). If she has had two positive tests then that would normally mean she has the condition. As Kirstin says it often runs with Thyroid Disease.

    I would try and seek out a APS specialist rather than just a rheumatologist as they are treating this condition all the time not just a few patients. The problem with that is that they stick rigidly to the diagnostic criteria rather than the patients symptoms and history.

    If I were her I would concentrate on getting a correct dignosis before having anything done. She may have to think about seeking out a specialist privately to speed things up and then take back the knokledge and DX to her local care team. Thats what many of us have had to do.

    There is a list of Specialists on the Hughes Syndrome website or you can get it on the "pinned posts" (top right) of the Posts page.

    Please let us know how things go. x

  • I think you shall follow the advise from APsnotFab. She knows this illness so well! Hope you will do that!


  • I would also join Thyroid UK on his same platform, as thyroid issues are notoriously poorly under diagnosed and also supported. MaryF

You may also like...