Platelets and haemoglobin

After having platelet reading of 800 it went down to 510 now today a stand in for my haematologist has phoned and said it is 540 and has upped the hydroxyl, she says my haemoglobin is going down which is surely anaemia and asked if I had any bleeding which I don't! She wants me to have a blood test in 2 weeks to see if any change and says I may need a bone marrow biopsy which I refused when my haematologist originally mentioned it. I suffer with extreme anxiety and claustrophobia and find it difficult even to go for blood test and sit on own. I will end up telling them to leave me alone ! Had enough!

[Hidden]

Stand ins are the pits. I had a stand in say exactly the same thing - my usual haematologist had to write saying anaemia is normal for these patients. 510 is to be rejoiced at!!

I would wait until your regular person gets back. This one just seems to be causing trouble. Don't bother doing anything in the meantime - just ignore it completely.

Go well, be encouraged.

[Hidden in reply to Hidden]

Thankyou for your reassurance, it is nice to be able to communicate with somebody who understands. Have a nice weekend

[mhos61]

Hi Rockstone.

Sorry to hear that you’re feeling anxious. Is there anyone who can accompany you for a blood test?

For some people, it can take a few adjustments to the dose of hydroxy to reach the desired outcome. It looks like you’ve been making fairly good progress. I see that you have only been diagnosed around four months, so it is reasonable that the haematologist is still in the process of titrating the dose. It is also encouraging that a blood test has been arranged for two weeks. This shows that they’re keeping a close eye on things.

It doesn’t necessarily mean that your haemoglobin coming down equals anaemia. That would depend on what your haemoglobin counts were before and what they are now.

I have ET and my haemoglobin counts were a high 16 at diagnosis; hydroxy brought my hb levels down too, but to a more reasonable average 14-15.

Mary x

[Hidden in reply to mhos61]

Thankyou for your reply Mary, it helps to know there is someone who understands! My husband takes me to the blood test but he has to wait outside and I feel as though I am in a zoo with other partners peering through the numerous windows..ha have to laugh though! I refused a bone marrow biopsy when my haematologist mentioned it and she said it was ok so I can only hope this other woman is not pushing for one.I am sorry I feel sorry for myself but had mastectomy and chemo and radiolotherapy in 2017 and minor stroke in 2019 and have psoriasis so haev had my fil lof b..... hospitals! Have a nice weekend.. Gill

[mhos61 in reply to Hidden]

Hi Gill,

I’ve experienced anxiety in the past, so totally understand. It sounds as though you’ve had your fair share of illness too, so you’re entitled to feel the way you do.

As far as a bone marrow biopsy is concerned, your locum haematologist may suggest one, but the choice to have one is always yours. You can always ask questions as to why this has been suggested, and take it from there.

I wasn’t offered a bone marrow biopsy, even though the year I was diagnosed with ET (2016) WHO made changes to include a bone marrow biopsy as a ‘major criteria’ for a diagnosis of ET; however, these are only guidelines, and clearly some haematologists differ in their adherence to the guidelines.

I’m happy not to have one for now, but that’s my personal choice. Of course, if I were to develop new symptoms or significant changes in bloods then I would definitely pursue one.

Enjoy your weekend too

Mary x

[hunter5582]

Oh brother! 510 - 540 is not a significant difference. Platelets can vary by as much as 100K in a single day. You never make decision based on a single lab read anyway. It is always the trend over time that matters. The precise platelet level is also not a determinant of risk of thrombosis. It is more complex than that. The short version, is that there is no linear relationship between platelet level of risk of thrombosis below a certain level. Also note that one of the leading experts on MPNs. Dr. Silver, uses 600K as the target level for platelets when cytoreduction is needed. silvermpncenter.weill.corne... .

Another note - you are taking hydroxyurea which reduces production of ALL types of blood cells. It is supposed to lower your RBCs. That is why it is used to treat PV too. Anemia is an intrinsic risk of HU.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

Before making any further decisions, suggest you see a MPN Specialist, not just a regular hematologist. Most do not have the KSAs to provide optimal treatment for MPNs due to their rarity. Here is a list mpnforum.com/list-hem./ . Please do whatever it takes to see a doc with the expertise you need.

[Hidden]

Thankyou for your helpful reply. I wish they would just leave me alone now, I have had enough! I will try and do as you suggest, many thanks .

[Angelinagaffer in reply to Hidden]

I wouldn't worry too much, your readings seem ok for our condition. Mine kept going up reaching 3000, my HU was increased and at my last blood test it was 579. Which is a lot better. I take 500 mg Mon - Fri and a 1000mg Sat and Sun. I find it interesting how many of us have had breast cancer before our mpn diagnosis.

[izzydrc]

I really would opt for the biopsy. I just had mine done and it was not as bad as I had thought. You can be sedated to so you know. I wasn't but it's an option. The bone marrow biopsy is tell what's going on and what phase in progression you are and helps with determining what meds would be best. I had worries about one but having had it, even though the first was dry tap and had to do another spot, it was no where near as bad as I thought it would be.

[Dodders]

Hi, medical procedures are invariably something to be endured, and avoided if at all possible, and it is certain that Drs will not perform any procedure unless it is for a good reason. When I asked why I had not had a bone marrow aspiration the answer was that unless my blood counts changed significantly there was really no reason to perform one, although they can be useful as a benchmark to see if change has occurred at a future date. If your blood test results continue to indicate some sort of significant changes then, I think you should be helped in anyway to face it, as a BMA would most likely be an important diagnostic. I am lucky that I don't especially mind being prodded and poked and so I cannot relate to your anxieties except to say I wish you well, and hope the Drs are able to fully appreciate your anxieties and do all they can to help you with your situation.

[Hidden in reply to Dodders]

Thankyou for your reply. What has put me off is watching a video on you tube of one being carried out and the woman was squealing in pain..they should give you a general..if they give you sedation and gas and air they must know it hurts! I have had 2 children and a mastectomy so know what pain is and I cant face anything like it again!

[IrishSarah in reply to Hidden]

Hi Gill,

So sorry to hear you had the experience of a new haematologist advising you to do the opposite of your current plan without knowing you or your individual preferences. I’ve been in a similar situation before and it can be upsetting.

Whether to have a biopsy or not is a decision for you alone to make based on the best advice from the haematologist who knows you and your individual health best.

All I would say to you is that one YouTube clip is not representative of what the procedure could look like for you. Did that poor woman have any numbing/local anesthetic? Was her doctor inexperienced? Did she have any other medical conditions that would affect her experience?

When I had my BMB I’d heard a full range of stories from the folks here - some really positive and barely felt it, some found it painful. Personally I didn’t have sedation (that was a mistake for me) and found it painful, but it was over very quickly with a really short recovery time. A few expletives were uttered but I certainly didn’t feel anything close to squealing level or childbirth pain!

[Vendredi]

So sorry to hear that! I would agree that you should find an MPN specialist to optimize your care, dear. He/she could explain the benefits of a biopsy vs not having one at all. As far as the BMB itself, I had one and it wasn’t that bad. Only a sharp scratch or burn at the beginning when they inject the local anaesthetic and a couple of minutes of dull pain then when they harvest the specimen. I understand that this may vary depending on the patient and the doctor though. Wishing you all the best whatever you decide!