I have recently been diagnosed with polycythemia - a blood state whereby I produce too many red blood cells and other blood abnormalities. I already have antiphilisopid aka Hughes disease which is sticky blood. Am now having investigations as to the cause which for me isn't a mutation of a gene (root of 95% of cases) do off to oncology and a sleep clinic referrals. Interested to see how many other thyroid peeps have polycythemia? Please drop me a line.

8 Replies

  • Oh poor you Trudes,

    I don't have polycythemia but feel like a ticking time bomb as am waiting for a Heamochromotosis diagnosise as my ferritin levels edge up and up each blood test.

    Like you the treatment will be monthly phlebotomy. Something else to look forward to.


  • My thoughts go with you. Maybe we should advertise for a vampire lol!

  • With true polycythemia, you'd have the gene, and you'd most likely be an older male with a red face. If this does not describe you, you might have erythrocytosis instead, which is slightly thick blood due to other causes. One cause is too much T3, because T3 stimulates (everything!) RBC production. How much T3 are you taking? If this is the cause of your condition, then simply lowering your T3 dose and possibly raising the T4 instead may correct the condition.

  • Thanks. Think your reference to "true polycythemia" is a bit harsh as I am neither male or 50+ but do have the diagnosis! The gene mutation accounts for 95% of secondary polycythemia so yes most common and prevalent in older males. The other 5% is caused by sleep apnoea or a cancer. I don't think I have sleep apnoea and already take low dosage oral chemotherapy meds so really have no clue to the cause. I will ask about T3 as only take levo for my hypothyroidism. Referrals for oncology and sleep clinic in hand.

  • Gosh. These illness are so complicated. Poor you.


  • Sorry, I didn't mean to sound harsh. My point was that doctors can misdiagnose problems and I personally know of a woman who was told she had polycythemia, which resolved once her T3 thyroid dose was lowered. Since you're only on levo, that doesn't sound like your case at all. But is your RBC, hematocrit, and hemoglobin just barely over range, or WAY over range? There's a big difference, and if just slightly over range, yours could be from dehydration, which hypos suffer from too. I know sleep apnea is a hypo symptom for some.

  • Thanks yes its not always a case of diagnosis = accuracy! It's not just my red blood count it's white too and others and they aren't crazy abnormal just consistently. I will go into battle to be seen by haematology as it all feels a bit random. Appreciate the advice.

  • As HIFL says, there certainly can be misdiagnoses, and this happened to members of our family re. B12 deficiency. Just a hunch, but I wondered whether B12 tests had been done previous to your diagnosis, as many symptoms seem to mimic deficiency.


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