Plebotomy or venesection question

I think it varies fron person to person. Ie , i was border line , though had a pint off but still feel the same, though that should have fixed the problem but it didnt.

Everyone is different..I got from 56 to 42 just by phlebotomies (I live in America)

but the most important thing that I did to lower that number was to STOP eating

foods with iron such as red meats, spinach and kale etc.  My onocologist wanted

me to take iron pills and I stopped that too.  I am not tired as one would expect with lack of iron after phlebotomies...mind over matter.  I drink plenty of water too and walk..since i had a probelm with leg clots (DVT).  I am a senior and have phlebotomies everytime my number is over 44.  Common sense and prayer is also very important.  Good luck.

Hi Julia

It does depend very much on the individual. My HCT was originally at 60 and I had to have venesection every other day initially for 2 weeks. It then came down to 53 and I then had venesection every week for a month and then every fortnight until it was below the 45 mark. This took just under 3 months. However, my HCT quickly rose again, which meant I was having to have venesections every 2 weeks just to keep it in check. During this time, my symptoms felt worse. Whereas I was having migraine with aura at least every week or every fortnight, I started to get them every day, Then, things started to stabilise. My venesections became monthly and now, although I still have monthly blood checks, my last venesection was over 2 months ago. Although I still suffer from fatigue, I have not had any migraines or even headaches come to that since the 28th May!!!! Furthermore, I have not had to use my asthma inhaler for over 3 months either, which suggests to me my breathlessness was due to PRV and perhaps I don’t actually have asthma. My plethora has gone, so I no longer have a permanent sun tan.  So for me, venesection wasn’t an instant fix and it hasn’t cured all my symptoms but I am certainly in a much better place than I was at the beginning of the year.

Hope this helps

Keith

Hi Julia

You are very welcome. We are all here for each other and that’s the great thing about this forum.

Perhaps the best way to approach the conversation when seeing your Doctor is to ask him if you are at any immediate “health” risk.  Maybe ask the specific question;  is my blood too thick, would having a venesection help my blood flow better?  I.e. can he treat and help alleviate your symptoms until a diagnosis is determined. Venesection is very much like giving blood so it’s not like it would have an adverse effect on your health providing of course you only donate every so often and within the guidelines given by the blood donation team. So, if your Doctor says no, you can always donate blood in the meantime. Once you have given blood, it is checked/screened in the laboratory before it is ever used/given to another patient. If they were unhappy with the readings, they would simply discard the blood you had donated.

Keith

Hi Julia

Yes, I am in the UK. They may attempt to take your blood but if it is too thick and not “flowing” as it should, they may stop the procedure. If so, that gives you a bit more ammunition to go back to your Doctor with! I would be surprised if they tested your blood prior to you donating it as it would have to go to the hospital laboratory (usually the Pathology Dept) for processing. Even for urgent/priority cases, this usually still takes 1 hour before the results come back. I think (I could be wrong) that they will test it afterwards. Putting the blood “donation” aside, if your Doctor does give the go ahead for a “venesection”, the nurse will most certainly take your blood even if it takes a while to drain a pint (or less) from you as they will want to start the process of thinning it as well as reducing your red cell count. The first few times they too mine, it took ages to fill the bag up. Thick blood can lead to strokes, heart attacks, pulmonary embolisms (as I have experienced) so they will be determined!! – That’s not to scare you, if your Doctor believes your health is at serious risk, he/she will take the necessary action. Take comfort, as although the JAK2V617F came back negative and you are still looking for answers……….you are on their radar.

Let us know how you get on.

Kind regards

Keith