Hi here , male 63 with fibro and sticky Blood

Hi folks hope I'm on the right forum , I was diagnosed with fibro some 10:years ago, I have just been through hell and back with extreme Fatigue blurry eyes , dry mouth

My gp had bloods done and thinks it Polycythaemia as my red BC count was high he thinks I might need to give blood in the hope it recovers, I've heard warfarin talked about a lot ?

I also have heart and lung problems so exersize is difficult

Look forward to a reply , God bless Drew x

7 Replies

  • Hi there and welcome, you will find you are not the only man on here, and I expect one of the other admins 'Dave' will say hello also. I is crucial that your GP refers you to a consultant who understands Hughes Syndrome/Sticky Blood etc, if you tell me your location I can take a look for you. If your GP is in an investigative frame of mind on your behalf, do make sure he/she looks at your levels of vitamin D, B12 and iron, as if any of these are low you will feel worse. Crucially also, patients with Hughes Syndrome/Sticky Blood, have a tendency to develop a thyroid problem, due to the unreliability of the limited testing, usually the TSH test, patients are sometimes told they have Fibro, when actually is is a Thyroid problems alongside a condition called Sjogrens Disease, this plus low vitamin D will combine to make you feel awful. Vitamin D needs to sit at 75 or above!

    I joined Thyroid UK on here to work it all out, and I also did private testing which proved I was severely hypo thyroid (slow thyroid).

    Sjogrens syndrome

    A significant number of Hughes/antiphospholipid syndrome patients will also have Sjogrens syndrome (pronounced show-grens) – another autoimmune disease.



    Your GP may be able to test for thyroid antibodies, do this prior to starting any vitamin D supplementation as it is more likely to show up. However here are the private tests I did, I do the finger prick ones through the post as they are more cost effective: thyroiduk.org.uk/tuk/testin...

    If you feel that you may have a thyroid problem, like many of us do, it is also simple to join the TUK forum on this HU platform, you can use the same log in and user name.

    Hope this helps. MaryF

  • Hi Mary,

    My Vitamin D came back at 49 yesterday and GP has put me on supplements and said it was 'an incidental finding' and not APS related - I think he's wrong! Is this common with APS?

    Hi Drew, welcome to the forum I'm sure you'll get lots of helpful answers.

    Kelly X

  • Hi Drew - In answer to your question I do think you are on the wrong forum you may be better to join The British Lung Foundation here on HU. I will however try and answer so of your questions.

    First, if your Dr is correct and you do have Polycythaemia then thats probably to do with your heart and lung problems. You don't say why you mentioned warfarin but that would not influence anything.

    Secondly, the fibro. Its very possible that you have developed secondary Fibro but as my colleague Mary has said, and from the symptoms that you have described, Fibro can often be misdiagnosed and its Sjogrens Syndrome. Do you have any other autoimmune conditions? If not then it might just be a normal aging sicca type syndrome that needs treating. If it is Sjogrens then Plaquenil is a medication that may help. If not then that needs looking into. Also as Mary says the Thyroid needs in depth testing not just the unreliable TSH test.

    Good luck with everything.

  • Hi Drew

    I agree with what my colleagues have already advised you.


  • Hi I have Aps and Polycythemia, no heart or lung problems though. Your haematologist should investigate whether the polycythemia is primary or secondary, there is a specific blood test for the jak2 gene. I've never yet had a blood draw even though my Haemoglobin level is high, they are apparently keeping an eye on it.

    I am on Warfarin but have had 2 strokes before getting my Aps diagnosis, do you have a clotting history?

  • Wow another person with Polycythemia! Amazing as this too is a rare blood disease! It's also precancerous and can turn into Leukemia at a time, then revert back to Polycythemia! Weird thing we have!!! I was phlebotomized for 10 years or more! Hope I'm not scaring anyone! My apologies if I am!!!But that's if you have primary Polycythemia! I think! I have secondary and cud NOT get special Cancer insurance due to Secondary Polycythemia ! I do have heart and lung problems too! Food, Asthma, and chronic Bronchitis as a child! I didn't know about the lung problems with Polycythemia! I also have APS, Sjogrens, Fibromyalgia, RA/Rheumatoid Arthritis! Heart and lung and severe stomach problems! As a child I was always very sickly and sent to hospital for weeks at a time and left hospital without diagnosis!!! All the time! Had pneumonia wen 11 and hospitalized! Always will remember those strange hospital stays and having some kind of Anemia! Some weird name with a P! I use to mow it but my memory is failing lately! I'm not happy u have Polycythemia, but it's nice to talk to someone with 2 rare blood diseases!

  • Drew2U - You need to see a Hematologist who SPECIALIZES in Polycythemia. If you have that you will need to do phlebotomies. That is where they take blood and dispose of it. Do not take your time locating that specialist and have a little sense of urgency. If your hematocrit aka HCT is very high you are at risk for a possible blood clot, stroke, or heart attack.They may recommend that you take a baby aspirin a day and fish oil. Good luck. Get to a specialist.

    You're GP should probably not try to manage you're APS.

You may also like...