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Obtained copies of FBC for past years - wow

Posted , 4 users are following.

jessie2150
jessie2150

Hi all.  Me again, so update and more questions for all you knowledgeable people, do hope you can advise me..  

Just got copies of my FBC results for last several years.  I can't understand them myself but last 3 years have noted Polycythaemia: if persists > 3 months and no secondary cause is apparent guidance is available is written on them.!

As noone has told me and nothing has been taken further what do I do now?   Just had another colonoscopy and the hospital were very concerned about my low oxygen levels (82) and I've been breathless, with tingling fingers for the last few months.  Was a smoker 12 a day, upped to 20 a day after husband's sudden death, now on 5-ish a day but using e-cigs too.

Totally lost here.  Am I breathless because of secondary polycythaemia/ or breathlessness causing secondary polycythaemia??

Is there somewhere I can check my printed results to better understand them?

Is my general doctor doing nothing as I was a smoker?  

Am I concerned over nothing?

Also am I maybe posting in the wrong place as I haven't been diagnosed with anything yet.

Help please.  Thank you all.  j x

 

 

0 likes, 12 replies

12 Replies

  • clem19079
    clem19079 jessie2150

    Posted

    Secondary prv is caused by smoking and drinking primary is a mutated gene. With secondary or primary you should be getting treated by a heamotology doctor. Ask for a referal. Because this disease is rarE, some doctors are not up to speed on the seriousness of the condition. If your gp somehow says you don't need a referal, tell him/her you would like a heamotoligist should make that decision.

    • jessie2150
      jessie2150 clem19079

      Posted

      Hi clem and thanks for your reply. I'm just so shocked that my printed results bring up polycythaemia (so glad I asked for them) but it has never been mentioned to me.  Expect it's because I smoked but guidance could have been given?  Told to be careful etc not just ignored.

      Hoping to see GP this week and get a referral - but why can't we rely on doctors to guide us.  j x

    • clem19079
      clem19079 jessie2150

      Posted

      I was given numerous blood samples over the yrs, it was never picked up on. It was my own gp who had a hunch because he knew I didn't drink despite looking like an alcoholic. Though that's not the issue you have, your condition is being ignored despite evidence to to the contrary. Heamotology will figure out over time whether or not it's genetic. Either way the treatment is more or less the same. If your surgery has more than one gp go to someone else. Especially if it's a woman. Blokes are stupid at best of times. I know, i'm one. ??

    • jessie2150
      jessie2150 clem19079

      Posted

      No clem it isn't down to being blokes !!  I'm starting to think it is down to cost of referrals for the practice.  Also those who shout loudest.  Well now I'm going to shout very loud and insist I see a heamotologist to get this sorted.  If it's due to my lifestyle I can give up smoking and the odd glass of wine of necessary - just need to be told.  j x.

  • caufenkamp
    caufenkamp jessie2150

    Posted

    I myself am in the middle of being Diagnosed for either Primary Polycythemia or Secondary Polycythemia. It can be a scary thing, for me at least. But I originally went in to the doctors due to being short of breath. it felt like I had something in my throat, It just made it so difficult to breath. I have alergies, so that made it even worse. They found out that I had the symptons for PV. On that day I cold turkey quit smoking. Its been almost 2 months now since. I use to smoke 20 a day as well. 

    Ill tell you one thing, it will help you with the breathing. But it may not be the only cause. Youll hate it and want to pick up a smoke every time your alone and free. But I would be lying if I didnt say, it was worth it. Plus the money I save now. I can actually afford to eat healthy like I should have been. Haha. 

    Whatever you decide. I wish you all the best, The people here are very polite and will help you out as much as they can, even if its just being there for you. 

    • jessie2150
      jessie2150 caufenkamp

      Posted

      Thanks for your reply caufenkamp, and well done on stopping smoking.

      Though I appear to have had high hb for years the breathlessness is very recent even though I have cut down on smoking.  

      I hope you get your diagnosis soon and that you are reassured.  I always like to know what I'm facing, it's the unknown that is scary I think.  Wish you all the best.  j 

    • ellen68007
      ellen68007 jessie2150

      Posted

      Hi Jessie! I was finally diagnosed with secondary Polycythemia. After a multitude of tests tge cat scan and lung function test revealed COPD. I have been refered back to my GP and respirologist. My breathing was difficult. My GP explained my body is producing so mant red blood cells because the red blood cells produce oxygen. I also was a smoker. I have got myself down to one smoke a day with the help of nicotine gum. My last blood test indicated my HCT levels were down a bit. Still high 49 but lower.
    • jessie2150
      jessie2150 ellen68007

      Posted

      Hi ellen:  Thanks for your reply that's interesting.  Does this mean that stopping smoking has resolved the whole problem for you or are you still considered to have Secondary Polycythemia ?  Do you have any treatment otherwise?   j x

    • ellen68007
      ellen68007 jessie2150

      Posted

      HI Jessie. No I still and will have secondary Polycythemia. The stop smoking just helps with the COPD not getting worse. I have be n put on blood thinners and also monthly B-12  injections to give me some energy for the fatigue that goes with Polycythemia. I will have regular blood checks. My level was 49 and it should be 35 . It's high but not enough to have phylobotomy at this point. I will also see my respirologist once every three months.

    • jessie2150
      jessie2150 ellen68007

      Posted

      Thanks ellen.  It's so useful to me finding out these things, I do appreciateyour replying.

      My HCT is 51, seems stuck around 50.  Hgb 160.  From what I've learnt here I need to get myself seen to.  

    • ellen68007
      ellen68007 jessie2150

      Posted

      No problem at all Jessie. It's nice to get opinions froze the ones that suffer the same health issue. My HCT is 49 ang hemogloben 162. Our levels are very close. Keep in touch and let me know how you are doing. I will do the same. Have a good day. 

    • jessie2150
      jessie2150 ellen68007

      Posted

      Thanks again ellen.  Just left a message for my GP that I want to be referred to a haemotologist (got my big girl pants on!!).

      My hgb is 166 at present, but still I keep thinking I've brought this on myself so don't want to make a fuss !  

      Hope the B12 and blood thinners help you - the fatigue so affects your life doesn't it?

      best wishes,  j x

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