Update 8.3

[hunter5582]

I sent this note to my MPN Specialist and local hematologist.

My most recent CBC at the PCP 09/06/24 shows HCT=46.2 HGB=14.7. The CBC at my local hematologist on 08/02/24 showed HCT=42.7 HGB=14.2. It seems a rather large jump in a short period of time given that the HCT has been stable in recent months. I am thinking this may be an anomaly, which has happened in the past. I am scheduled for a CBC at my local hematologist on 09/27/24. I am planning planning to defer doing anything until the HCT/HGB numbers are confirmed. If confirmed, will schedule a phlebotomy.

Note that A1c and glucose remain elevated, in the prediabetes range. May not be related to the Besremi but do not think raising the dose would be a good idea at this time.

As always, your input on this plan would be appreciated.

Both hematologists responded that this plan makes sense. We will wait until the end of the month to see where I am at.

My local hematologist (Great doc!) gave this response.

I agree with not making any changes to the Besremi.

As with any lab test, there will often be some amount of variability. So checking the Hct 10 minutes apart may yield slightly different results. Superimposed on that would be hydration status.

It might be interesting to come up with some sort of standard approach to CBC's. Like trying to reproduce the same time of day with the same amount of hydration each time...

In any event, let's see what the next check shows.

It is great to have such a supportive and responsive MPN care team that actively engages the patient in shared decision making.

I am meeting with my PCP this Thursday to review the prediabetes readings and other general health issues. All of the other labs done look great. I expect the next step will be to lose weight and see what happens. I will consider metformin or something else if the PCP thinks it should be considered. We will see what happens.

All the best to all of you all.

[EPguy]

That is a deep thought reply from a Dr. Not common.

Do you have a plot of your HCT/time? This shows outliers and variability most easily.

[JAB6]

Wishing you the best on sorting your blood counts. You are practicing what you tell everyone to advocate for yourself!

[gilded]

Thanks for update. Very informative. Wishing you all the best. Your reports are always a terrific contribution to understanding MPN.

[Manaaki]

Your MPN care team seems absolutely amazing! Blown away by the thoughtfulness even down to suggesting same time - same hydration levels for blood tests to compare apples with apples I guess! It just goes to show how invaluable and encouraging it is when deep thought goes into your readings and you as a person before any changes are implemented. That is really holistic! Wishing you the absolute best going forward!

[RedCardRob]

Thank you for the update.When everyone agrees there is always positive thinking as a result and not many, if any, 'buts'.Good for you and reassuring for us.

[RoundTheWorld]

Thanks for sharing Hunter. Hope next results move back into line I’m in the same boat re. recent test results (some rises last month so venesection next week unless yesterday’s blood test shows improvement).

Very glad your team are on the same page and clear, open and supportive - it makes a huge difference to patient morale. Your own balanced approach and style invite that of course!

[Gaithersburg]

Thanks for sharing your communications to your haematology team, Hunter. I enjoy reading your posts as you are so knowledgeable and use this, without belittling the medical team, to highlight your detailed involvement in your care and make joint decisions. You are an inspiration to us all. I hope that this is just a blip and the counts are back to what is normal for you next time. Thanks again, I really appreciate you taking the time to involve us as we learn so much each time. Best wishes.

[Lyndjs]

I too always look for, and read your posts with interest hunter5582

I think like you it could be an anomaly. I've often wondered about the timings of my blood tests. I seem to get better results after a late afternoon blood test, than an early morning. I'm thinking hydration may play a part in this.

It's so kind of youto share all of your experiences with us, I know you're posts help us all.

Please keep us updated xx

[ainslie]

I find labs can vary a lot from lab to lab and time of day and hydration, I mainly use the same lab at the same time of day and try to keep the hydration consistent. If I do that I am quite amazed how the readings are almost if not identical every month. I noticed the lab at MountvSinai had Hgb 10 points less than the NHS in Scotland. And of course all labs claim theirs is accurate because it’s checked etc.

[Hopetohelp]

yes I always try to get cbc done same time of day and same day of week if possible. It keeps stability for watching trends. Your Figures may all be back to normal next time. Sometimes our bodies have little blips that then settle down. Watch and wait and reassess sounds like a good plan. Good luck

[Iwillwin123]

I am sure many like me are quietly following your detailed informative inputs - it is a study of how Besremi is working out - many like me who are on hydroxyurea but have not made the leap of faith to Besremi , due to various reasons , would find this immensely informative ….. Thankyou for taking the time out every time to give inputs.

Regards

[LIGEBA]

Sounds like you have amazing dr.s who truly listen to what you have to say, and validate your input into your own care plan. As ainslie mentioned, I do believe hydration plays a big role in the HCT number. I also have had as high as 5 - 6 point swings (both up and down) in a 3 week period. I always drink 100 ozs of water per day on a regular basis. 2 - 3 days before my blood draws, I increase that amount and it has made a difference. I can't control the time of day my blood is drawn but do get it done at the same lab all the time. Also, as you probably recall, I am only on aspirin and phlebotomy for my treatment.

I'm sure we will all be looking forward to your next report and set of numbers. I hope this was just an anomaly for you and that they return to normal.

[KLCTJC]

Hopefully, when you recheck it, it will go back down. Labs can be so variable. Wishing you the best!

[Alex9621]

On 8-13-24 I had labs done with local hematologist and HCT was 41.7. On 8-16-24 went to Quest HCT was 45.7. I went to my MPN specialist on 8-20-24 where they did a repeat of labs to confirm the HCT which was 45.7 and then did phlebotomy. Ironically, I even noted over the last several years I very, very seldom had a phlebotomy done locally but always seemed to have them at MPN specialist. Would different labs, hydration level, and time of a day make that much of a difference?

[hunter5582 in reply to Alex9621]

I do think that different labs can make a difference based on the HCT calculation technique used. Hydration can definitely make a difference in HCT since plasma volume is part of the measure. Not sure about time of day but my hematologist thnks it could make a difference.

[EPguy in reply to Alex9621]

I get counts at my Hem office (5 minute results) and at the health org labs (6 hour results) Each has different reference ranges. This example shows my Hb is out of range low at MPN office, but would have been ok at the org lab. Maybe that last one would be higher if done at the regular lab.

This supports the idea of differences between labs, but I think would not be a cause of large variations.

Hgb refs

[saltmarsh]

Thanks for the informative update. Hopefully an anomaly. I don't know about you but I can always work myself up when the numbers move out of the range I've come to expect. Give us an update when available and good luck.

[hunter5582]

Like many others here, I have seen differences in CBC values at different labs. Regarding HCT, this is related to the technique the lab uses. Directly measuring HCT by comparing red blood cell volume relative to plasma volume is the most accurate method but not all labs use this technique. Some estimate rather than measure the HCT value. There are different formulas that are used. HCT = (RBC x MCV) / 10 or HCT = (HGB x 100) / MCHC are two of the calculated HCT techniques. I am not sure what technique the lab at my PCP office uses.

I agree with the comments others made that the best way to compare to compare apples to apples is to compare values at the same lab. That is part of why I am waiting to see what the HCT value is at my regular hematology lab before making any decisions.

Wishing everyone all the best.

[Alex9621 in reply to hunter5582]

Thank you for this very informative information!! It really helps to know this information and that is what I love about this. Thank you for always taking the time to respond.

[Hidden]

And always the very best to you Hunter. What a great interested and empathetic response you got!

[artydutch]

let’s hope it is an anomaly… you have a very logical approach and a plan of action with a very switched on team of medics. Good luck with the next blood test.

[AnBee]

if A1C or fasting insulin is elevated the overall inflammation is increased. Can this also be a confounder? Is your CRP etc checked at the same time?