ET and anaemia

[Debinuk]

I have suffered from mild anaemia in the past and took iron tablets for it. Now despite taking iron tablets I am still anaemia. My haematologist has told me not to take iron every day (I wasn’t told why) but now I find that nothing is helping. I do intend to talk to my GP about this but wondered if anyone else has had this problem? Of course the tiredness is quite debilitating.

[hunter5582]

You need a better explanation of your current MPN status. While people can and do experience anemia co-occurring with ET, it can also be a sign of change in your MPN status. Suggest you seek consultation with a MPN Specialist for the best assessment and treatment plan.

[Debinuk in reply to hunter5582]

Thank you. I will do that.

[Debinuk in reply to hunter5582]

Hello Hunter. To follow up with my struggles! I asked my GP to refer me to an MPN specialist and she doesn’t want to do that. Am I asking the wrong person?

[hunter5582 in reply to Debinuk]

As I understand it, in the NHS either your GP or your hematologist can refer for the second opinion. There is no reason for either to object. Given that you are experiencing ongoing anemia that does not respond to iron supplementation, a proper diagnosis is essential. Ohers from the UK/NHS can make the best suggestions about navigating the system.

You did not report your iron panel members, which is essential to understanding the form of anemia. As others noted, iron deficient anemia is only one form of anemia. There can be other causes, including progression of the ET into another MPN. I am not suggesting that is what this is but it should be ruled out in the case of worsening anemia. Ther other causes also need to be assessed.

Assertive patients receive higher quality care. Passive patients do not. Suggest this is time to be assertive. Get the full panel of testing and consult with a MPN Specialist. This is not a "May I" situation. This is an "I will" situation. It is your prerogative to seek appropriate care and do what is needed to make it happen.

Wishing you success moving forward.

[Debinuk in reply to hunter5582]

Thank you

[Frances1903]

Thank you for your message.It might be worth asking your doctor to.check re Vitamin B12.8 note quite a group of us with an MON also gave either thyroid problems and or low B12.Hope this helps.

[Frances1903 in reply to Frances1903]

Sorry for typos!

[Debinuk in reply to Frances1903]

Thank you. Apparently my B12 levels are normal

[Trocken]

I too am very anaemic at the moment in b12, folate and ferritin, numbers are all in my boots, my RBC count is also very low. I’m currently on just 2 refuse sulphate tablets a week, my GP rang Haemotology for advice on the treatment just last week! I’ve had short courses of iron previously which Haemotology agree too, but the issue with the iron tablets is that they increase your platelet count which is why Haemotology don’t like us taking them. I often argue that the side effects of being this anemic are debilitating. I’m starting loading doses of b12 injections this afternoon so that will help with the neurological symptoms I have. Have you had your b12 checked too, I’ve been reading into this a little more and MPN’s can often mask the true extend of a b12 deficiency for some reason. I would give you MPN speciliast team a call, I spoke to my nurse last week and thankfully I have my next appointment in a couple of weeks which I think we’re all pleased about. It’s worth speaking to those that know your blood well, but don’t be afraid to ask to trial ferrous sulphate for a short while and boost your ferritin levels to a point you can function. I hope your feeling better soon x

[Debinuk in reply to Trocken]

Thank you. I had no idea that higher levels of iron raise platelet levels.

[UKZA]

I am anaemic , but not iron deficient. Check with your doctor as to where the deficiency lies. All the best. Penny

[Debinuk in reply to UKZA]

Thank you. I will do that.

[kitttycat in reply to UKZA]

Would you know what kind of tests do they give you to find out the cause for your anemia.?

Thank you.

[UKZA in reply to kitttycat]

I have low haemoglobin, tested in my monthly full blood count, iron levels are tested in ferritin tests. A BMB confirmed that it is the interferon that is lowering my RBC rather than disease progression. They should be regularly testing your blood and enzymes depending on medication.

[kitttycat in reply to UKZA]

thank you

[AnBee]

Apparently 45% of us humans have a MFTHR gene which means we easily run active b12 and folate deficiency as well as anaemia. I am one of these people. I was alerted as many women in my family line are often aneamic. I now take Methyl B vitamins with folate as well as iron supplements

Please read up on this as there is much information about this on the net.

The problems begin to arise when we are transforming from ET into MF where anaemia can arise from immature and poorly/irregularly shaped red blood cells.

This is when you need clarity in the form of BMB and genetic test for the MFTHR genetic mutations. Hopefully this may clarify but can also confuse. For me the answer is to take the iron etc supplements. specifically for MFTHR people and my anaemia dose seem to respond to that. I am MF intermediate now CALR 2 , TET 2

[Debinuk in reply to AnBee]

Interesting, thank you. We also have anaemia in the family.

[Debinuk in reply to AnBee]

(I have never had a BMB)

[Trocken in reply to AnBee]

This is really interesting, thank you for sharing, I’m going to read up on it. I’ve never had a bmb but I’m asking for one in a couple of weeks. Things just aren’t adding up anymore. X

[saltmarsh]

The advice posted here is spot on. I went thru a period of iron deficiency anemia a few years ago. I'll spare the details but the solution needs to be tailored to your specific needs. I currently take one iron pill and one dose of b12 weekly and that seems to be working. Best thing is to work with an MPN specialist. Good luck

[Debinuk in reply to saltmarsh]

Thank you

[AnBee in reply to saltmarsh]

Unfortunately none of the specialists I have worked with know anything about Methylation problems. They are highly skilled in the current allopathic methods and that’s why we all see them. A better therapist for methylation would be an excellent Naturopathic or Functional Medical Dr and in fact I advise you to include these in your treatments

[Anag]

Both my parents are Greek and my mother and I were constantly given iron tablets for our anemia. Finally, when I was 23, and living in the Greek part of Montreal, one doctor found that I had beta thalassemia, which is the Mediterranean anemia. My mother had it her brother had it. I have it my brother doesn’t. The problem happens when two anemic people have a child.

I have nevertheless had a strong and energetic life with weak times in between. We can’t get rid of it. It’s just there. When I change doctors here in Vienna Austria, he says oh my God you need iron you’re so anemic. I said really? He said yes. I said really? Really really? Then he looked better. He said yes. And I said check my iron and I was more than full of iron. He would’ve given me iron pills and sent me home.

if you come from a place near the Mediterranean or if you’re Asian or part Asian, then you might have the alpha thalassemia, which is so often in Asian countries. These never go away we are born with them and we can very well with it.

please check your iron levels, especially the ferritin which most doctors don’t take seriously.

You may also have bleeding somewhere in the body please get a second opinion. Especially from someone who thinks out of the box.

wishing you a wonderful new year!

Anag

[Debinuk in reply to Anag]

Thank you and also a lovely story but sad at the same time!

[nellietheelephamt in reply to Anag]

Thank you for this great information. Lots to think about

[Cja1956]

I am post ETMF. My original doctor told me not to take iron even though my hemoglobin was low. I think that is more for people who have PV. When I transitioned into MF and found a new doctor, she started giving me Aranesp injections to increase my hemoglobin. My ferritin levels are checked on a regular basis and my iron is fine.

[Debinuk in reply to Cja1956]

I think that progression is my greatest fear and wonder if the anaemia is something to do with that. I shall be asking for a BMB

[Cabert]

I also have low iron and tablets didn’t work so had an infusion which did the trick. I have ET also.

[Cabert]

And I have early MF

[Cabert]

I also have regular iron studies and had both endoscopy and colonoscopy to look for any bleeding but no signs. Drs now just check and will infuse as necessary

[Debinuk in reply to Cabert]

Thank you. Interesting

[Stephen399b]

I have ET diagnosed in 2016. Also prostate cancer Stage 4 since 2021. I am getting more anaemic, with recent ferritin down to 7. I still take Ferrous sulphide which has raised it to about 25, but seems to be generic to the condition. I would welcome any suggestions.

Cannot take alcohol, otherwise I would have Guinness!!