ET and iron intake and supplements

[Searcher56]

Since being diagnosed with ET JAK2+ in November 2016 and 9x500mg Hydrea weekly, I have never been given any information on either taking iron supplements or trying to avoid absorbing it. A GP suggested I take liquid iron and I bought sachets of iron water. Does it matter with ET or is iron only an issue with PV?

[Rachelthepotter]

Hi. When I was diagnosed with ET/MF my haem took me off the iron supplements I’d been taking for years, because I might need blood transfusions eventually and he wanted to delay any iron overload.

Worth asking your haem/ cns if that is a possobiligy

[Mica11]

I have the same as you Searcher56 and was diagnosed Oct'17. Iron has never been mentioned to me at all. I just thought that when your bloods are checked that would be something that would be flagged up if iron was not as it should be and your Haematologist would then advise.

Grace

[Wyebird]

Iron or lack of it is a huge issue for me. ( Calr et) I was told by my heamo not to take an iron supplement for fear of overdosing. They did a ferritin blood test on me which shows I have ample in my body but I just can’t make heamoglobin.

I think maybe discuss further with your heamo.

[Tico in reply to Wyebird]

Hi wyebird,just came across your reply to searcher56 regarding et/iron. I seem to be in the same prediciment. On my last 2 visits to haemo my haemogloblin was 11.2 2 months ago than dropped to 10.2 on my last visit nearly 2 weeks ago. Iron cannot be the issue as haemo asked about my iron intake. I know it is not iron related but nonetheless since than i've drasically upped my iron intake by including more leafy greens and fruit in my diet plus more red meat as i'm normally a big eater of chicken. Interestingly never had a problem with haemoglobin before when i've been on higher doses of hydrea. Will certainly dicuss this with haemo on next visit if it continues to drop. Atb,tina.😊

[MoNut]

I am never sure about taking extra vitamins I suppose we should. I do take bit D tablets as advised by my GP. Maybe we should have a word with our pharmacy.

[Searcher56 in reply to MoNut]

I try everything. I have spent hundreds of pounds on vitamin supplements and minerals. Many years ago I took multivitamin tablets that I bought at the supermarket, I also had adult spots on my face. One day stopped taking the pills just to see if I really need them and the spots disappeared. Now I buy expensive vitamins and no spots. I take 5000iu of Vitamin D3, Vitamin B group in methylated form, CQ10, trace minerals, just to mention a few. A dietician would say that if you eat a balanced diet, you do not need any of these vitamins and surely, if someone cooks non-organic meat and veg from fresh rather than eating processed foods and does not take extra vitamins, they are going to be a lot better off than someone who eats pizza and chips, fizzy drinks etc. But I want to be as healthy as is possible in these end times, so I pop pills. Definitely Vitamin D3 is a must.

[Wyebird]

I’ve upped my protein, fruit and veg intake still no luck😢. My energy is so low I’m becoming a sofa maid x

[Searcher56 in reply to Wyebird]

If you look up on the Amazon, there are some interesting books on "Chronic Fatigue Syndrome". Almost all of us suffer from CFS to some degree. Interesting new research is happening out there. If you look up username "Carolyn77" and read her story, of course the advice given applies to her but it will give you insights.

[Mazcd Partner MPNVoice]

Hi Searcher, you really must ask your haematologist about taking iron supplements as you may not need to. Maz

[Searcher56 in reply to Mazcd]

Will do on the 11th.