Not dx yet, seeing hemo next Monday

Allergies, blood and immune system
1

Hello! I'm female, 60yrs young.

Over the last 7 years I've had health issue after health issue.

Hole in heart (25mm) repaired

Secondary adrenal sufficiency 

Lupus (in remission)

Asthma (related to heart) 

And now this blood work over two years which has rise and falls and rises this time round in - 

Hb 

Hemocrit

RBC 

Sometimes esr. 

So now there is talk of polycythemia.

I have one copy of the gene, which increases my risk. 

Can I ask if these symptoms sounds familiar in the early stages?

Fatigue (sometimes so weak I can't do very much, was avid cyclist and hill walker)

Headaches on and off (used to have migraines these are slightly different)

Angiodema of uvula, tongue from time to time

Can't concentrate (was doing masters leading to phd had to resort to modanifil)

Sometimes confused

Sweating for no reason (post menopause by 20years)

Itchy from time to time

Red face (thought it was roscea)

Spontaneous ruptures of small vessels in fingers (they itch first then hurt then rupture) 

Visual disturbances (flashing lights)

Bp is all over the place. Sometimes low sometimes high (could be SAI) 

Aching joints like I feel like I have the flu most of the time.

Sitting at my desk causes my legs to swell (brand new symptom) 

Tinnitus 

Breathing sometimes a bit difficult when laying down.

Left ribcage ache or discomfort kinda thing it's vague but started with a definitive ache on breathing but not pleurisy. Weird I know. 

Just so bloody tired all the time. Can't go for more than an hour with out having to sit down. I used to be very active.

I would love to hear your thoughts.

Thank you so much!

2

Hello Scooty,

Yes, many of the symptoms do sound familiar to me. I am now 66 and was diagnosed early in the spring of 2015 after initially having a painful, dingy blue left index finger.

Since then I have realised that many of the symptoms of polycythaemia had been around for years but were so vague and so insignificant that I had just put them down to getting older.

Every one of us who has been diagnosed with polycythaemia experiences different symptoms. Some people say that they get a lot of headaches, I don't (so far). I have had things that have now disappeared but been replaced by other things. 

It is a chimera of a disease.

However, don't panic. It is controllable and if you take care of yourself you should be able to live to a ripe old age.

I get tired a fair bit some days (not all) and I just accept that I am tired and have a lie down, When I don't feel tired I push myself to walk briskly uphill and so on. But I am a believer in ignoring boring stuff and just getting on with life.

Other people will tell you more.

 

3

Hi Scooty,

Sorry to hear that you are suffering so.  Your symptoms could well be caused by Polycythemia but this does not necessarily say that you have this disease.  To diagnose this disorder you will need to undergo specific tests by a haematologist and only then would a specific diagnosis be confirmed or refuted.  This is particularly important for the symptoms you itemise could equally well be directed towards other illnesses that have similar characteristics.  The sooner your illness is clarified the better for you.  I would suggest you keep in touch with your medical advisers for now and trust they will provide some worthwhile information for you.  However, this forum can be a wealth of advice for you if PV is the culprit.  I wish you well.

Peter.

4

Hi Angela,

Recently saw a a TV documentary film dealing with environment problems  in your vicinity.  Did you see it and were you included?

 Peter

5

Thanks Peter, this elevated Hb, hemocrit and RBC has been steadily rising over two years, so I hope it's something simple.

I had started to feel well after my heart closure. Was back cycling and hiking, from 2012, until three months ago when I felt like I was grinding to a halt,  in any case tests next week and hopefully some answers. 

Fortunately I could do some of the preliminary tests myself being a medical professional so they were ok, sats fine, heart rate fine, bp fluctuates but that could be SAI.

The only thing I couldn't do was my ecg!  Thanks for the good wishes!! Here's hoping they come up with something! It's not getting better at all but declining little by little.

All the best Peter! Thank you again! 

6

Hi Scooty,

Thanks for your reply.  As Angela has already advised you, Polycythemia is a very variable disorder and very rare into the bargain, maybe as you already know.  It is only more recently that a fault with the JAK2 gene was found responsible for the disease and there from birth which is generally accepted.  There may be other causes found but to date none are known.  It is said to be non-hereditary nor transferrable.   There are treatments available which are suited to the individual tests each patient undergoes.  This includes venesections and medication.  The haematologist controls this aspect.  You have certainly suffered but oddly this is not unknown as other PV patients can specify.  There is currently no known cure but the treatments can be very effective.  Research is continuing here.  PV can be difficult to establish due to its rarity and symptomatic variations that can be involved.  I was first diagnosed almost twenty years ago now and subsequently realised that I had been suffering minor symptoms many years before this.  It is a progressive disease but it can be lived with.  Diet and exercise can be quite beneficial, but as you will realise this is not the same with everyone.  If you are not diagnosed with this illness then consider it a big plus.  I hope you can reach a comfortable solution that will ease your difficulties.  It can also be difficult to discover any information about PV which is classed as one of the MPN diseases but both this Patient site includes some useful details about the disorder and other items are available via internet searches.  I include the above in case it might be found useful for you to discover where you stand.  Basically PV is caused by an overproduction of the red cells and this might just indicate the symptoms you describe relating to the abdomen pain in the area of the spleen.

I would point out that I am not a medical professional, just someone long suffering from this disorder whom has learned much about its credentials.   Best wishes.

Peter.

7

No, Peter, I didn't see it.

Was I included in the environment problems in my vicinity?  Only after I had beans for tea.

8

Thank you so much Peter!

Yes it's a very rare condition which I hope I don't have as I just don't want to add to the numerous genetic issues I have already, however that said, I'm grateful for the life I have. I'm lucky to be here, very lucky.  I have looked thru my research and at the university and there is little information in comparison to other conditions.

I would rather spend my time helping others than think about being ill again, that's for sure.

nonethless I am hoping it's something simple.  Although my gut and how I feel tells me something is not right at all. 

Bone marrow has been ordered and I have that next Monday.. and so it begins once again. 

I do thank you for all your advice, support and words of wisdom. Many thanks!!

Will post when I know more. 

Kindest regards

9

Hi Linda,

No it was motor vehicles causing the problems, unless you are fitted with an outboard motor.

Peter.