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High RBC, Hemaglobin and Hematocrit?

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alwayscoffee
alwayscoffee

Hello! I'm new here and have a question about my blood tests.

So I figured I would be proactive and order my own blood test and check to make sure I am healthy while trying to get pregnant. Everything was normal, including my magnesium levels, which was great, but on my CBC, my red blood cell count, hemoglobin and hematocrit were all high. This wasn't a first time thing. For the last 3 years of blood tests, my hemoglobin and hematocrit have remained high, sometimes my WBC would be high and then sometimes my RBC would be high or sometimes my lymphocytes would be high as well. Nothing was ever critical high, but just high. I also had a high Erythorocytes Sedimentation Rate (which just is a test for inflammation) and a Low Urea Nitrogen level (this was in 2015 though). 

I was seeing a doctor a couple years ago when this started and he threw out "polycythemia," but he said that would be extremely rare for my age (I'm 28). He tried to rule out secondary polycythemia and ordered chest x-rays, thyroid tests, etc and everything else was fine with me. During this time, I found out I also have Heterozygous Factor V Lieden, which just means I am at higher risk of a blood clot in my life, but doesn't mean I will for sure get one. I have to take extra care during pregnancy as it could make me have miscarriages as well.

I did see a Hematologist and he didn't seem to worried about Factor V or my high blood test. He said he doubts it is polycythemia because of my age. But neither doctor ever figured out why my blood tests remained abnormal for so long. 

The only symptoms I have is constant fatigue (even after full night sleep) and itchy skin after exercise or hot showers/baths. That's it. My vitamin D level was low at one time, but it's normal again. I take tons of vitamins now to try to stay healthy. I don't really work out, but I am 5'1 and 115 pds. I have a drink or two a night, 4 times a week or more. I don't smoke. I eat healthy. I drink a ton of water everyday. 

Hubby says we will notify the OB when I get pregnant and show him my current blood tests and see what he says. He doesn't think it's something I need to worry about right now if it's not affecting me. He hates going to the doctors and I don't blame him for that. After going to my last doctor for a year trying to figure out what was wrong and spending a TON of money, it was frustrating and useless. Ever since my last doctor threw out the word Polycythemia, it has worried me though. I wish he never suggested it.

Does anyone have the same problem as me? Is this something I should worry about? What would you do?

Any advice would be so helpful, I'm stressing out! 

0 likes, 18 replies

18 Replies

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  • Alex_Mir
    Alex_Mir alwayscoffee

    Posted

    Hi

    Usually people with such mild symptoms as yours can live for many years before they develop sympthoms, which need to be attended to.

    In my case I had high blood count, itchy skin after shower, migraines with aura and other minor inconveniences for at least 15 years before something more serious happened. In my case it was a burning pain in the tips of my fingers and toes followed by developing blood clots under my fingernails (lots of little brown dots). I am glad that I did not try to fix something that was not properly broken before that moment. If I were put on Hydrea before it became absolutely necessary it would affect me in a really bad way. For instance once you are on these drugs having children might become a bad idea. It is quite possible that despite having a disorder you can go on for many years before you will need to start worrying. Perhaps if you start leading a super health life now - you might even never need to worry?

    I hope you will figure out what to do and it will be a right thing to do.

    Best Wishes

    Alex

    • alwayscoffee
      alwayscoffee Alex_Mir

      Posted

      Thanks for replying! I appreciate it. You made me feel a bit better. smile

      I also wonder if it's because I drink a bit too much for my weight? I have cut back and only drink 4 days week vs everyday. I do love wine and cocktails! haha. My liver panel came out fine though. I'm hoping, if anything, I just have secondary PV or better yet, no PV at all!!

      I guess my next step would be to see a doctor.

  • angela_o..o
    angela_o..o alwayscoffee

    Posted

    Hello alwayscoffee,

    I take it from your speech patterns and the fact that you mention money in connection with doctors’ visits that you live in the United States. I live in UK so our experiences may be a little different. (Apart from the fact that I am 40 years older than you confused.)

    If I may take the opportunity to preach a little here, if you are trying to get pregnant then alcohol ahould be off your diet completely......Right, got that out of the way. 

    If you do have polycythaemia, you may well experience fatigue and itchy skin after washing. But there again, that may be due to something else entirely. It is not unheard of for people your age to have polycythaemia.

    Do you have a reading for your haematocrit? That is a reading for the viscosity of your blood. I have a neice who has had many miscarriages because her haematocrit is high and she has trouble controlling it. So far as I know, she does not have polycythaemia. But it would be useful for you to know about your haematocrit percentage before you try for a baby.

    Have you had a JAK2 test done? This woukd establish at least if you have primary polycythaemia or not. That is when there is a spontaneous genetic change within your body. The JAK2 test does not tell you whether you have seconday polycythaemia  which is caused by environmental factors.

     

    • alwayscoffee
      alwayscoffee angela_o..o

      Posted

      Hi! Thanks for your response. smile

      Yes, I do live in the US. You're lucky you don't have to worry about money for health issues. I wish that would change here.

      I am going to stop drinking once I get pregnant and I have already cut back while trying to conceive. smile I am kinda weaning myself off, but if I find out I am pregnant, then of course I will stop completely. smile 

      My RBC is 5.67 

      Hemoglobin 17.3

      Hematocrit 50.3

      I have not had the JAK2 test done yet. I can't order it by myself, I would have to have a doctor order that. I'm planning on seeing one soon hopefully.

       

  • peter98873
    peter98873 alwayscoffee

    Posted

    Polycythemia is caused by a defective gene generally from birth.  In most case it does not manifest itself until later in life but it can appear at any age really.  I think Angela in her reply has hit the nail on the head with her comments.

    As for all the tablets you seem to be taking you might find that by reducing this amount could well assist your health.  

    If the haematologist is not concerned then I don't think you should concern yourself overmuch.  They are the specialists here and would ultimately be the ones to supervise any blood disease.  You know, people often worry about having serious diseases particularly if they just happen to be mentioned my a medic, only later to discover that there never was any disease in mind.  I can't advocate on the feminine issues you mention but try to be a little more relaxed and cross your bridges as you come to them.  Don't mess with hydroxycarbamide, it is a powerful medicine which can be used for quite a few different applications.  Anyone with Polycythemia can vouch for its potency.  Good luck.

    • alwayscoffee
      alwayscoffee peter98873

      Posted

      Thanks for the response! smile

      Tablets? You mean my vitamins? Why would I reduce them, just curious? I just take prenatals, vitamin c and omega 3's. This is all because I'm trying to get pregnant. <3

      I think you are right, maybe I am over concerning myself. I almost wish the doctor never threw out the PV word. I guess only time will tell! I will see what my OBGYN says when I get pregnant.

      Thanks again smile

       

    • justin23294
      justin23294 peter98873

      Posted

      Peter. I've follow your replies for the last few years.You're very well versed on Hydroxyurea. But what do you do if there is no affordable alternative ?Thankfully after 3 years i have no side effects .

    • peter98873
      peter98873 justin23294

      Posted

      Hello Justin,  Thanks for your message.  Yes, I feel I have learned a lot about Hydroxycarbamide and of necessity really.   From the time I was 1st diagnosed with PV I used this drug.  Initially it worked very well

      in controlling everything but as time went by I must have become used to the medicine and needed stronger and stronger dosage.  This lasted for many years until about 4 years ago when I had to be medically removed from this drug and then restarted with Hydroxy.  However, the same thing happened again and i was once more medically removed from the drug.  I was suffering severe symptoms and  needed hospital treatment to keep me going.  By this time I had been participating in the medical trials for the new drug Ruxolitinib (Jakavi in UK) but was in fact still taking Hydroxy (as a placebo).  Of course, this did me no good yet despite the constant medical supervision my plight became so uncomfortable that my Consultant Haematologist stopped my use of Hydroxy and arranged for me to be prescribed with Jakavi and I am still using this to great effect.  My blood readings returned to normal and have remained so for about 2 years now.  I feel immensely better for it too.  I am on a minimum dosage of Jakavi.  Now I am quite aware of the costs of Jakavi both in UK and elsewhere globally and that it presents a problem to those on a low income but if one can afford it then I would, on the strength of my own experiences, recommend with the commensurate medical approval, that it should be considered by anyone having difficulties with Hydroxy.  I would point out that I receive the drug free under the NHS in UK.  Whilst I know this does not answer your question about alternative drugs I can say that it is possible to receive a different  drug via your doctors that can be used.  Some patients now use Interferon whilst others use something else.  Other drugs are in the trials pipeline following research and will obviously become available once freed for use.  I know a number of patients will successfully use Hydroxy for a lengthy time without any ill effects but it all depends upon your personal chemistry, such is the variable nature of PV.  My PV has progressed to MF now and the Jakavi has proven quite effective in controlling this too.  The long-term effects will not become known for a while yet but so far, it is proving to be an impressive contribution towards the treatments of MPD's (Myelo Proliferative Disorders) of which PV and MF are both constituents.  If I can assist further just let me know.  Best wishes.

      Peter.

    • justin23294
      justin23294 peter98873

      Posted

      Thank you Peter for your very informative reply. Hopefully I will be able to take Hydroxyurea for long time. Its very affordable in the US with my medicare plan. So far is doing the job. 16 500mg per week. My platelets are now normal below 400. My biggest problem is the loss of food taste. All my doctors tell me its not from the Hydroxy. But some times i wonder. They tell me its probably from head trauma from my fall .I wish i could stop the medication to find out for shure. Thanks again. Justin.
    • peter98873
      peter98873 alwayscoffee

      Posted

      What a delightful name you have given yourself  - are we all invited ?  Not so long ago I was discussing with my GP the usage of alternative medicines and vitamins and the result was that some patients will be medically approved  to use some that are approved whilst most will not.   It was impressed that if one lived by and followed a sensible diet, including suitable exercise, one should not need any further fortification.  This was later confirmed in a UK government investigation into this very subject which came out strongly against the extra use of additional alternative medicines proving that they were generally of little use.  This will never stop people taking these items but it is professionally considered that most of any benefit is of a mental nature and not from the substances themselves.  My own daughter was a highly qualified and senior midwife who was in charge of a hospital midwifery unit for many years would never ever recommend these additional substances unless medically prescribed.  She has her own grown family.   It is fairly common knowledge that supplements are widely used here in UK and in US and elsewhere but  the professional and official advice here is that they are basically not of any benefit.

      I know this is a good subject for discussion and there are many views held about it but I have gone as far as would wish.    Stay well..

    • peter98873
      peter98873 justin23294

      Posted

      Hello Justin,

      Thank you for your response.  I think you are doing the right thing.  All the time you are happy with your treatment leave well alone I'd say.  I do seem to recall at some stage that some other person on this site mentioned loss of taste but that it was only of short duration.  Hydroxy is a powerful concoction and I don't think one could rule your taste problem out entirely.    Each person has their own effects from any drug they take as these can be very different.   From my own experience I have never had this effect and my intake was much higher than the one you quote.   Do not stop the medication without proper medical advice.  There is a correct way this should be done.  As you say, there are many ways in which ones food taste can be affected.   That your platelets are controlled is a very good sign.  If you do find you are receiving ing any odd symptoms do advise your haematologist.  Best wishes.

      Peter.

  • angela_o..o
    angela_o..o alwayscoffee

    Posted

    Just a question.

    Do you live high in the mountains?

    Living at high altitude can be the cause of secondary polycythaemia. 

    • alwayscoffee
      alwayscoffee angela_o..o

      Posted

      Yes, I do now. I pondered that as well.

      But when I had these tests done in 2015 and 2016, I didn't live in the mountains. But I visited my mom often who did...

      That would be a relief if that's all it was!

  • justin23294
    justin23294 alwayscoffee

    Posted

    The only way you can find out if you have pylycythimia is to have a bone marrow test. After my blood clot 3 years ago my plateles started to rise. My himotaligist did a bone marrow aspiration an came positive for primary pylycithimia and JAk 2. I'm on blood thinner and Hydroxyurea to lower my platlets that are now under control .I'm 81 years old and my himotholagist says that having this disease does not diminishe your life expectancy .So please look at the bright side. Hope all goes well .

    • alwayscoffee
      alwayscoffee justin23294

      Posted

      Thanks smile That's really good to hear. You don't see a lot of 81 year olds on a forum, that's pretty cool. Sounds like you are a young 81 years old! My grandma new nothing about technology! 

      Hope all goes well to you too! That's awesome you have it under control. <3

    • justin23294
      justin23294 alwayscoffee

      Posted

      Thank you. At 81 physically i fill fine.I would never know of my blood disorder . Now if I could eve ever get my food taste back, then I would live the rest of my life happy ever after.
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