Update 8.4 - Unusual Finding

[hunter5582]

The CBC and CMP look good.

However the Iron Panel looks odd.

TIBC 93 - Low (Ref 250-425) - Usually WNL

Ferritin 20 - WNL - (Ref 11-307) - highest it has been for long time

Iron % Sat 67 - High - (Ref 20-50) - Usually Low

Iron 62 - Low - (Ref 65-175) - usually low but highest it has been in long time.

This is a change in the usual pattern re. iron. This could be the result of the PV, the Besremi, or a combination thereof. Perhaps something else?

I sent a request for interpretation to both my hematologist and MPN Specialist. We will see what they say.

I decided to ask Chat GPT and received some interesting results. Here are some selected highlights

Iron Dysregulation: MPNs, particularly polycythemia vera (PV) and myelofibrosis (MF), can lead to chronic inflammation and bone marrow dysfunction, which affects iron metabolism. Inflammation drives up levels of hepcidin, a hormone that reduces iron absorption from the gut and traps iron in the liver and macrophages. This leads to: Low Serum Iron, Low TIBC,

◾High iron saturation: Despite low serum iron and TIBC, the percentage of transferrin that is bound to iron can be high because the available transferrin is saturated by the limited circulating iron.

Summary of What It Means:

In the context of MPN and Besremi treatment, a high iron saturation with low serum iron and low TIBC suggests a combination of:

◾Chronic inflammation causing iron sequestration in storage sites (e.g., liver and bone marrow).

◾Suppression of bone marrow activity by Besremi, reducing the need for iron in red blood cell production.

◾Reduced transferrin levels (low TIBC), likely due to inflammation or the effects of Besremi, leading to a higher proportion of the available transferrin being saturated with iron.

This pattern reflects a functional iron deficiency where iron is stored but not efficiently utilized or transported, rather than a true iron deficiency. Monitoring iron levels and evaluating potential interventions (such as iron supplementation or adjusting treatment) should be done in consultation with a healthcare provider, considering the underlying disease and treatment plan.

What a unique and interesting health learning opportunity! I am am looking forward to learning more from my fabulous care team. I must confess though, I would rather be boring! That is one of my primary treatment goals, to be "The World's Most Boring Patient." Alas, the goal remains elusive.

Oh well! I am feeling fine and having fun. Quality of Life is my most important treatment goal. We will get this most recent anomaly sorted out. I will let you all know what I learn.

All the best to all of you all.

[Iwillwin123]

Very interesting analysis .

It is evident that a studied approach helps to help ourselves indeed …..

[Lyndjs]

Thank you for sharing. I think we're all learning through you Hunter. I do love a bit of Chat GTP, although I often forget to use it. It really helped at the start of my journey.

Hmmm, I would never think of you as boring, interesting & engaging +++ but I totally get it. I hope your wish comes true xx

Hope you soon get answers from your medical team, and share 🤞

Lx

[Phil1955]

you are definitely not boring you are a fountain of Knowledge I love reading and learning from your posts 👍

[ainslie]

everyone to their own Hunter but I would take chat GPT with a pinch of salt , its accuracy can vary a lot. I would be inclined to await your docs responses. I hear from others on Peg that they find ferritin stays stubbornly low. Seems better on Rux , mine is around 90 with MCV 88.

[hunter5582 in reply to ainslie]

I take AI responses with 2 pinches of salt. Fortunately, AI seems to be getting better. Important since it is making its way into medical practice. While the response to the question I posted about my results is consistent with what I understand about iron metabolism and PV/Besremi, I am going to rely on the expert response from my care team. I have two great hematologists who I trust. We will see if their analysis matches the AI response.

[ainslie in reply to hunter5582]

By Co-incidence, this info below arrived in my inbox from patient power.info

Cancer patients, listen up: Do not depend on ChatGPT for medical advice. That’s the take-home message of a recent study in which doctors asked ChatGPT 20 questions about breast cancer, then analyzed the accuracy of the responses.

About one in four of ChatGPT’s responses (24%) were inaccurate. The researchers asked ChatGPT to give references with each answer and 41% of the websites that ChatGPT cited were realistic-looking URLs for nonexistent webpages. For these reasons, “patients should be cautioned about using ChatGPT for medical information,” the study authors wrote in their paper.

[George1976 in reply to ainslie]

ChatGPT is on version 40 now. I heard a story where a mother had become frustrated with numerous doctors who could not figure out what was wrong with her son after over a year of running from doc to doc. She ran her child’s test results through ChatGPT and it concluded he had a spinal cord issue. She took the results to his doctor and it was confirmed. Pretty sure the kid is doing well now. Here’s the story… today.com/health/mom-chatgp...

[George1976 in reply to ainslie]

I’m pretty sure there’s software that interprets the results of a CBC as soon as it’s generated in the lab now. For us this means as soon as the doc reads the results they also see what the computer thinks is of concern and it probably also recommends what to do. Testing swimming pool water at the pool store is the same thing. The software sees the ph level of your water, it knows how many gallons of water are in your pool, what other characteristics are and it recommends which chemicals to add and how much. Beyond that it’s a guessing game that’s best played with the smartest most experienced doctors who also hopefully truly care about their patients.

AI is going to revolutionize medicine in particular by putting more knowledge in patients hands and helping young inexperienced doctors be more effective.

[ainslie in reply to George1976]

I think it may be of more use as time goes on and may be of use for certain things now but any expert I ask about it for MPN business tend to say not yet

[Hopetohelp]

wow good luck and we all learn so much from your posts thank you

[RoundTheWorld]

Thanks as always for sharing Hunter and glad you are feeling well despite the 'interesting' iron results! Long may that last.

The interpretation by your medical team will be very educational for us.

(Btw is the iron (62) serum iron? Were you also told your Hb - wondered if that is high, low or normal?).

[hunter5582 in reply to RoundTheWorld]

62 is serum iron and just slightly low. HGB =14.5. HCT=44.2. Other relevant numbers from the CBC are WNL. RBC=5.50, MCV=80.4. MCH=26.4, MCHC=32.8. RDW-CV=16.6 which is a bit high as it usually is.

I will see what my care team says about the recent results. Hope to learn more soon.

[Solyesh]

Very interesting indeed! And I am with you on QOL being the utmost goal!!

[azaelea]

Thank you for posting this, Hunter. Hoping you get some answers from your team soon. I so agree with the others how we appreciate your knowledge and help on this forum.

[DougyW]

Whilst I don't understand the science behind this is ut worth getting a repeat test before reaching conclusions. Also, are there any one off circumstances that could have modified the results such as diet,

[Pounds11]

I just want to tell you your health overviews on your way to becoming the world’s most boring patient are so informative, inspiring and always adjust my attitude. Again, thank you and good sledding with this new anomaly. Marti

[SoledadBarcelona]

Did you check the diet, your microbiote, suplementation, etc?. Everything is under the magnifying glass

[Blonde25]

Thanks for sharing Hunter . I hope you get the answers you need from your care team . All the best

[TTA_]

I have been having iron deficiency without anemia since adolescence, and it seems I have been having essential thrombocythemia since then too, if not even earlier.

I remember discussing with an internal medicine doctor about the fact that iron supplements resolve the IDWA only on short term for me, after that IDWA is back. The doctor, knowing I had episodes of body pain at that time, pointed me to studies regarding hypoferremia of inflammatory diseases. When I got my ET diagnosis, it made even more sense.

In all likelihood, there are more mechanisms behind these abnormalities with iron seen in MPN patients.

haematologica.org/article/v...

[RoundTheWorld in reply to TTA_]

Similarly for me - long term iron deficiency without anaemia (which isn't necessarily just from the MPN as fibroids caused heavy periods, but until I was diagnosed I didn't know there could be something else contributing too). I had a confusing few conversations where I asked why my Hgb was always quite high despite the iron deficiency and wondered why I didn't then tip into anaemia.

[Anouchka]

thanks for always sharing so much info Hunter. You’re a stabilising voice in a confusing (medical) sector… All the best to you, always

[saltmarsh]

Hunter - you are a breath of fresh air, as always. Many thanks for your contributions to the forum. Your discussions over the years re iron have been particularly invaluable to me.

I do believe that AI has already, and will continue to, drive medical breakthroughs. But definitely not reliable enough yet.

Good luck getting answers and enjoying life.

[hunter5582 in reply to saltmarsh]

Thank you for your kind words.

I agree that AI can be very useful but that it is not always reliable. Hopefully, the different AI platforms will continue to improve. This is very important since many people are using these tools to access information, including medical professionals. It helps to have at least a basic understanding of the issues when using AI. This helps you weed through what is germaine and what is potentially irrelevant or inaccurate.

It seems from the comments that others have experienced various anomalies with iron physiology. This is not surprising since PV involves dysregulated iron metabolism. Understanding iron metabolism helps to understand what is going on in PV and other MPNs. One example is that iron deficiency without anemia can mask PV, making it present more like ET. It is a fascinating but complex issue.

For those interested in the topic, this is a nice presentation on Iron Physiology

youtube.com/watch?v=ahCy97F...(Not working as expected?)

[Bluetop]

I'm sorry you can't get a straight run withiut these challenges along the way. I too aim to be a boring patient! The whole iron issue is something I struggle to fathom, but I keep trying. I think the AI involvement is a great idea -as you say, it can't be relied upon but at least it might identify questions to be answered and as time goes on no doubt it will become better. Good luck with your team.

[hunter5582 in reply to Bluetop]

I think helping you to ask the right questions may be one of the better uses for AI. It is a suggestive tool not a diagnostic one. One must sort the wheat from the chaff when using AI, however.

I posted a link to a training on iron metabolism above. It is worth watching if you want to know the basics of how iron gets metabolized in the body. Understanding normal iron metabolism makes it easier to understand the role it plays in MPNs. Here are a couple of articles on the topic that are very interesting. One of the exciting things happening due to better understanding the role of iron metabolism in PV is the new drug in development, rusfertide, which is a hepcidin mimetic.

nature.com/articles/s41375-...

ncbi.nlm.nih.gov/pmc/articl....

[Bluetop in reply to hunter5582]

Very useful! Many thanks.

[brightlys]

I'm glad you're feeling well! It will be interesting to hear what your team says about your results. I second wanting to be the most boring patient 😂