iron infusion gone wrong

[Nc3500]

hi everyone I was diagnosed with ET but possibly PV still watching but iron was low they gave me a iron infusion then I had a anaphylactic reaction in October they told me to start taking iron but I read a post about someone talking a supplement on here with iron and everyone saying not to take it I know it makes more blood at last doctor appointment was January 6 my iron level went up a good bit I’m taking a beef spleen supplement And doctor was shocked said to keep taking it but my white cells were up and hemocrat right at 45 told doctor about symptoms I’m having and she was kind of clueless I’m thinking if your a mpn specialist you should know about symptoms any advice on supplements I think I need to find another doctor

[CalL1981]

Hello! I know each case here is different and none of us here are Drs but I have been told multiple times by my hematologist that ET patients should not take iron supplements. Would be worth you speaking to an MPN specialist ASAP to review your case.

[Nc3500 in reply to CalL1981]

I am seeing a mpn specialist that’s why I believe I need to find another doctor not to be rude but she doesn’t no much even when I spoke about headaches she said it’s not a symptom and want to send me to a neurologist 🤦🏻‍♀️

[hunter5582]

A few factoids

Headaches can most certainly be a MPN symptom related to microvascular issues. That is not to say that you cannot have headaches for some other reason. Consultation with a neurologist who specializes in migraine is likely a good idea.

Iron levels most certainly do matter. It is common in PV for iron levels to be low as a function of the PV. People with ET can also have low iron for unrelated reasons. In fact, having low iron can cause reactive thrombocytosis, raising the platelet levels.

Part of the treatment for PV is to lower the iron levels even further with phlebotomy. The body needs iron to make red blood cells. Lowering iron lowers RBCs, usually measured with HCT and/or HGB. Iron supplementation would normally be contraindicated for PV patients.

ET is treated differently in regards to iron. Iron is not used in the production of platelets or white blood cells. If you are iron deficient, this is an issue that would usually need to be addressed. It is generally OK for people with ET to supplement iron. It might help with reactive thrombocytosis if that is evident. Iron supplementation with any MPN is something that should be guided by a MPN Specialist.

White blood cells being higher can happen for a number of different reasons. These include infections. Interpreting what elevation means in your case depends on just how high they were. Were you within reference range or was there leukocytosis? It also matters whether this was a single read or a trend over time. Suggest you review this in more detail with your care team.

While some symptoms ae more common with PV than ET, many can occur in both conditions. There are also some with MPNs whose diagnosis is not as clear. Some end up with a MPN-Unclassified diagnosis as a result. Being clear about the diagnosis guides the treatment.

I believe you have had some co-occurring medical issues as well as a number of different MPN-related symptoms. Some cases are more complex than others. It is very important to have confidence in your care team, particularly with a more complex medical status. It is certainly reasonable to seek a second opinion or find another MPN Specialist if you wish to do so.

I expect you have seen this before, but here are the lists again just in case.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

[Nc3500 in reply to hunter5582]

Thanks for the information unfortunately I’ve tried to see some of these doctors in NC none were excepting new patients I do have an MPN specialist but does not seem to address my needs on last visit told me she does not need to see me for a year 🤷🏻‍♀️ And everything looks great but her notes specified a very different diagnosis claiming Hemocrat is up hemoglobin is up white cells are up and continue to rise just don’t feel comfortable but on another note Ruben Mesa is going to be transferring to North Carolina so I’m very excited about that Just taking it one day at a time thank you again for your reply

[hunter5582 in reply to Nc3500]

Suggest that you not give up. My daughter, who also has a MPN, is being seen by the team at Duke. She likes to team there.

[Nc3500 in reply to hunter5582]

wow small world yes there are good doctors in duke the one I have dose mpn but is more for leukemia

[hunter5582 in reply to Nc3500]

Maybe another doc from the MPN Team at Duke? Or UNC is you want a different system. Regardless, I would not give up trying to get answers.

[friendofpiglet in reply to hunter5582]

Dare I suggest that you look up 'factoid' in a dictionary.......

[hunter5582 in reply to friendofpiglet]

Maybe a "factette"? 😀

[friendofpiglet in reply to hunter5582]

Hmmm! Both indicate inaccuracy and triviality.I don't think you are the sort of chap to wear either of those labels - so stick with 'facts', why not?

👍

[hunter5582 in reply to friendofpiglet]

👍👍

[Anag]

I think you’re listening to too many people and too many cooks spoil the soup.

I’ve had dangerously low iron for the first time in my life since the Pfizer Covid vaccine (among other horrific symptoms). I got rid of the vaccine out of my body, some damage remained.

I took iron every day for a month. At the 2 week point was a blood test and my ferritin started filling up. After 5 weeks of supplements it was good and I stopped the supplements. I’m greek and greek generally eat more than enough iron in their diet, nevertheless my iron kept going down, and then I continued taking one capsule twice a week. Now after 15 months, I don’t need Iron supplements anymore.

everyone’s body is differently and our bodies react differently, depending on our chemistry and diet. The most important thing is when supplementing to test the supplements. The most important thing when taking supplements is to test and see what the supplements are actually doing in the body! Any doctor that orders supplement that are not natural and those that are stored in the body, without testing the reaction of the supplements after a while, doesn’t know what they’re doing!

is your doctor really an MPN specialist?

[Nc3500 in reply to Anag]

lol that’s my question don’t really feel like she is a specialist and I am Greek and Romanian also it’s just frustrating when you’re used to being so active and taking care of everyone and then it being hard to even take care of yourself thanks for your reply

[Anag in reply to Nc3500]

wow I can sing a song or two about taking care of others, and then having the tables turned on me!!!!!

[Lappool in reply to Anag]

can I ask how you got rid of the vaccine from your body? I’m very interested, thanks

[Nc3500 in reply to Lappool]

I believe I’m answering your question correctly they gave me many IVs and I just had to take Benadryl for that whole week plus EpiPen

[Anag in reply to Lappool]

the Pfizer effect on my body was tested with Bioresonanz (Quint System in Austria) and the inflammation caused was on level four. After five therapy sessions, I was down to level one. The doctor said one more session would have been perfect. Then I got Covid. My husband was vaccinated three times in my 19-year-old daughter twice, and all three of us were sick, the same. My vaccination no longer counted.

the doctor asked me to go in for two sessions and the Covid would have been wiped out as he wiped it out in himself and his wife within two days. I should have done that it would have only cost €500 and I would have waited two weeks of being sick.

[Wyebird]

hi I swear by honey two teaspoons a day.

Anecdotal I know but it works for me. If I stop taking it my haemoglobin goes down

[Wyebird]

I forgot to add that I can’t take iron supplements because I have a very high ferritin level. ( always anaemic) very frustrating.

Lots of blood components are related to iron. That’s why it’s important that you tell/ consult with your heamo first before taking any supplements.

[Jsb45]

My hematologist is strongly against adding any iron supplements, It will cause Hgb to go up and then you need more meds/phlebotomy to get your levels down. Then iron goes down so you supplement more and what a merry chase we are on! I'm not a doctor or oncologist but have read a bit on the subject and had 4 different oncolgist/hematologists and they all said no iron supplements.

I'd look for a specialist if at all possible.

Good luck!