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Date of last update: 10/12/2017.

Forum Name: Hematology Topics

Question: Elevated Hb, venous sinus thrombosis, no diagnosis

 MrPTG - Wed Jan 14, 2009 11:55 am

Dear all,

I am a 30 year old male and in November 2005 I was admitted to hospital as I had blurred vision, my pupils were irregular and I had a severe headache and was being sick. After blood tests it was discovered that my haemoglobin was 19.2 and CT and MRI scans confirmed a venous sinus thrombosis. The clot damaged one of my cranial nerves which has left me with peripheral double vision although this is not severe.

Over the past three years I have had numerous tests to try to uncover why my haemoglobin is raised, including:
- Red Cell Mass (My test showed I was 110% but I was told it had to be 125% to be classified as polycythaemia vera)
- Thrombophilia (all tests for clotting disorders were negative)
- Iron levels normal
- JAK2 mutation normal
- Oxygen binding afinity borderline
- Ultrasound normal
- Ocular myasthenia gravis test normal

I was initially on heparin in hospital, followed by warfarin for 9 months and I am now on Plavix (clopidogrel) daily.

I ensure that I am hydrated, have a relatively healthy diet, do not drink to excess and do not take drugs. I am a smoker however I have reduced my smoking significantly and changes in my smoking habits have not impacted on my Hb over the last 3 years.

I see a haematologist every 6 months and my Hb has continued to be between 18 and 19. My ongoing symptoms include daily headaches, general tiredness, dizziness and a feeling like I am moving or falling when I am standing still, blurred vision, intermittent low blood pressure which has caused fainting, itching after a hot bath, redness in the face which seems to be getting worse down the sides of my nose, general muscle pain (particularly in my neck, shoulders, jaw and legs), restless legs at night or when on a long plane journey. I have also more recently started to get pain and a feeling of tightness when I get an erection.

My most recent blood tests also showed elevated white cells so I had a bone marrow test.

I saw my haematologist today who said that my bone marrow was 'overactive' but he still felt I did not have polycythaemia vera. He is now seeing if phlebotomy will help and I am scheduled for this next week and in 3 weeks time, with a follow up haem appointment after this.

I'd be incredibly grateful to get any thoughts on the above as it is very frustrating (I think for my haematologist also) to continue to have tests that are not completely 'normal' but not be given a definitive diagnosis. Obviously I am very pleased that I do not seem to have anything sinister at the moment but I am also aware that these things can progress and in the meantime my symtoms do cause problems in my daily life.

So any opinions or ideas for further tests/avenues I could discuss with my haematologist would be very much appreciated.

Thanks in advance!
 John Kenyon, CNA - Thu Mar 12, 2009 10:58 pm

User avatar Hello --

While your hemoglobin was not quite up to the old "gold standard" for polycythemia vera, the diagnostic challenge for this disease is changing, and simple reliance on hemoglobin levels is no longer considered the definitive standard. The standard is still somewhat vague, but when hematological findings (such as your elevated hemoglobin) is correlated with a certain factor (JAK2V617F mutation), especially when characteristic symptoms are present (as with you) and everything else has been ruled out, then the diagnosis can be made with relative certainty. Since your doctor has decided to treat you based upon protocols for PV, one must assume, in the absence of the JAK2V617F mutation (for which you should be tested at once), we can reasonably assume you do have PV, which, if treated appropriately, is compatable with a normal life and lifespan.

I would bring this to the attention of your doctors as soon as possible, in order to establish the diagnosis within reason, especially since the therapy is being instituted anyway. It would be good to be relatively certain (although I think we already are) that you do, in fact, have PV. A concrete diagnosis would be of great help in future.

I hope this is helpful. Best of luck to you and please do follow up with us as needed.
 MrPTG - Fri Mar 13, 2009 4:50 am

Dear Dr Kenyon,

Thanks very much for your reply, I really appreciate it. I have been tested for the JAK2 mutation and my test results were normal so my haematologist is convinced that I do not have PV, which is obviously good news. What I'm not clear about though is whether you can have PV in the absence of a JAK2 mutation?

After venesection twice over a two week period, my symptoms did not improve and I felt quite washed out so he has stopped this as a course of treatment. He feels that there are no other tests he can do so he has now discharged me back to my GP and I will no longer be seeing a haematologist.

My haematologist suggested that perhaps I am purely one of those people who have haemoglobin levels at the top of the range. Which I can accept, but it doesn't explain my continuing symptoms or the reason that I had a sudden venous sinus thrombosis in the first place. Also, all my tests seems to have been borderline - like the red cell mass, oxygen binding affinity and the activity of my bone marrow.

Obviously now I'm not under a haematologist or having regular tests it makes me slightly anxious in case they have missed anything or any of my 'borderline' results progress. My GP will now only be taking my bloods every 6 months.

I suppose all I can do really is monitor my symptoms and if I feel like anything is getting worse, try to get an appointment as soon as possible.

Thanks again for your advice! I'm obviously just a medical mystery :0)

 John Kenyon, CNA - Sat Mar 21, 2009 10:03 pm

User avatar You can have PV without the JAK2 mutation being evident, so being followed every six months is probably the appropriate approach right now, barring any worsening or emergence of new symtpoms. If that should happen you definitely need to be re-evaluated. While you may be someone who just tends to have hemoglobin levels at the top of the normal range (and that's why there is a "range"), I feel there must be something causing the symptoms, and hopefully it will become more clear over time. Monitoring your symptoms will be an important part of the process.

You may be a medical mystery now, but before long I feel certain the mystery will be solved. Meanwhile, be patient, hang in there, and by all means stay in touch with us here.
 MrPTG - Mon Mar 23, 2009 7:22 am

Great, thanks and I'll make sure that I get back in there for those blood tests every 6 months and monitor my symptoms. Thanks for all of your advice!

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