vitamins

[Phojespa]

Hi I take 1000mg hydroxyurea and 1 clopidogrel daily for the last 20 years since I was 39.

I feel I need a boost and wanted to take iron, b12, and vit d anybody know if there would be issues with this.

struggling with headaches and fatigue at the moment

[Cat1001954]

hi I have ET and take vit d daily

[Phojespa in reply to Cat1001954]

thanks and no side effects?

[Cat1001954 in reply to Phojespa]

No I asked my heamo consultant and he said it was fine to take

[Phojespa in reply to Cat1001954]

Thanks

[hunter5582]

Nutrition is an important part of having energy; however, iron and Vit B are unlikely to help unless you have a nutritional deficiency. Suggest that getting a nutritional evaluation (lab work) to assess your status. When I did this, we found that I had deficiencies in Bit B/folate, Vit D, and magnesium. I titrated to supplement doses based on a measure follow up evaluation.

Fatigue is the most common of the MPN constitutional symptoms. It is also a common adverse effect from hydroxyurea. The fatigue could be either of these or something else. Timing may be the only clue as to the cause of the fatigue.

There is some good guidance on managing fatigue, starting with the MPN Voice website.

mpnvoice.org.uk/living-with...

mympnteam.com/resources/man...

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

[Phojespa in reply to hunter5582]

Thanks very helpful, the vitamins wouldn’t interfere with the meds then if I gave them a go?

[harev in reply to Phojespa]

My MPN says no iron period.

[hunter5582]

Not that I am aware of. You can check yourself here reference.medscape.com/drug... It is best to check with a pharmacist or your MPN care team.

[EPguy]

Check any supplements for vitamin B6. It is neurotoxic in high doses, and can be listed in some supplements. I had 400+% over limit in a blood test. It was hiding at 300% RDA in the low dose melatonin I was taking and smaller doses in another supplement. It can take 6 months to clear. B12 does not share this same risk.

[Amethist]

before you take any supplements it’s always best to have a blood test so you know exactly what your levels are and what , if any, deficiencies you have.

You can either ask your doctor to do this or do it privately. There are several reputable UK postal blood test companies that you can easily use. The downside to that is cost and your gp will probably ignore the results. So if you can persuade your gp to do the test, that’s probably the best, at least for a baseline.

However don’t expect your gp to have a clue about any vitamin deficiency, their causes , symptoms or treatment . For that, you’ll have to do your own homework.

For me personally, sorting out my vitamin deficiencies had amazing results. BUT - do not take any vitamins at all until you have this first test. This is especially so for B12. Doctors are notoriously bad at understanding this essential vitamin.

Also suggest you make a list of all your symptoms, no matter how mild, date it and then if you do start taking supplements, after a test, you can keep check if those symptoms are improving, changing in any way.

If you do have deficiencies, whilst supplements are really helpful, you will need to establish why you are deficient. Scrutinise your diet. Some changes may be helpful.

Lots or really helpful books on these. Once you know if you have any deficiencies , happy to recommend some reading material so you can take charge of your own health.

Don’t delay getting a blood test. Make an appt today .

Good luck

Also , make sure you get a copy of all the results with reference ranges. That is also very important.

[Tati08]

Hello I also have Jack2 and I also get tired really quickly and after consulting with my doctor, he said that if the iron is included with other vitamins, then you can take it, but not for a long time. Take breaks. I am taking fitline now..

[kitttycat]

Hello, I take the same amount of hydroxyurea daily and also take vitamins with iron, B12 and also take vitamin D. and have for several years. They are fine.

[Lyndjs]

Hi, I have PV and take peginterferon, aspirin and vitamin D. I did ask consultant before starting the vitamin D and he said it would be fine, it may help with memory too. With regard to Iron & B12, I was told a definite no no. Haematologist said he would monitor all my levels and if anything additional was needed then it would be done through him.

Best to talk to your Haematologist as I'm sure we're all different x

Take care xx

[saltmarsh]

I'm on a similar HU dosage. In the past I developed iron deficiency anemia and related fatigue and was prescribed iron. However, that is not a good longer term solution given it's impact on the blood. I have been on vitamin D for the last several months because I have a deficiency. That's best taken with something fatty like a peanut butter sandwich to enhance absorption.

A couple of months ago my doctor recommended b12 which does appear to have made a difference with fatigue. It apparently is best absorbed when dissolved under the tongue - I use liquid b12 via a dropper and hold it under my tongue for 30 seconds before swallowing. I am pretty sure it is helping.

Again, as suggested earlier, this should be monitored with periodic blood work. Wishing you the best. I'm hopeful you'll find a solution.