folic acid

[kiwitraveller]

I have read that taking a Folic supplement can help with anaemia. I have prefibrotic myelofibrosis and on hydroxycarbomide 10 x 500mg a week - platelets hover between 600-800 and am anaemic. Anyone using folic?

[Mazcd Partner MPNVoice]

hi Kiwitraveller, it would be advisable to get advice from your doctor and haematologist about taking any medication or supplements for anaemia, just to check if there are interactions with your current medication. Best wishes. Maz

[kiwitraveller in reply to Mazcd]

Thanks Mazcd will do that

[Otterfield]

Your folate levels can be tested and if they are low your doctor can prescribe a high dose supplement. The ones you can buy are too low to make a difference. I know this because I have to take it and it has been explained to me. Adequate levels of both folate and B12 are necessary for production of red cells and platelets, but having any extra won't make a difference, according to my doctors.

[kiwitraveller in reply to Otterfield]

Thanks for that

[hunter5582]

Vitamin B/folate deficiency anemia is a specific condition. This form of anemia can be treated using supplements. There would be no reason to take a Vit B/folate supplement in the absence of a deficiency.

Mazcd is correct in noting that this is a question for your care team. it is simple to check whether a nutritional deficiency (iron, Vit B/folate) is playing a role in your anemia.

It is worth noting that Vit B/folate is involved in more than producing blood cells. It is vital for neurological functioning as well. It is worth have a nutritional assessment done for your overall health. When I had a comprehensive nutritional assessment done, i was deficient in Vit D, Vit B/Folate, and Magnesium. I am taking doses of each of these nutrients which were titrated based on a measure response.

All the best.

[kiwitraveller]

thanks for that will check with my Haemo and see if I can get the tests

[Plate]

Hi, I take folic acid 1000mcg/daily. I also take B12 5000mcg, biotin 5000mcg and B1 500mg. I have ET JAK2 + on HU 500mg every other day. This is down from 500mg everyday. My health has just gotten better over the months and platelets are 350. My fatigue is a rarity now. I am 71yo and manage my 16 acre farm with little to know help. My hematologist has approved these supplements. Best wishes!

[kiwitraveller in reply to Plate]

Wow that is great I have been lucky with no fatigue but get bone pain in shin on one leg which is annoying but not debilitating. Good luck to you

[champ30]

Hi ,I was prescribed folic acid. I have MF. to be honest I never questioned it with my consultant as it was prescribed by a doctor on duty whist having a transfusion a long time ago. My next appointment with my consultant is coming up soon and I will ask the reason....I must need it.

[kiwitraveller in reply to champ30]

Will be interested to hear the outcome

[Amethist]

I would ask your GP for a blood test. Check your Vit D, Folate, B12, ferritin, iron panel and thyroid ( TSH, Free T4, Free T3, thyroid antibodies) A thyroid that is struggling will affect your Vit B levels. All B vits work together, especially folate and B12. Low stomach acid with seriously affect your ability to extract B12 from your diet. Many things can affect your stomach acid such as medication, antacids, thyroid issues etc. If you follow a vegetarian/ vegan diet, you may also be prone to deficiencies as you won’t get them sufficiently in your diet.

Always get a print out of all your blood test results.

Also good to know that’s especially for B12, the test is pretty rubbish . In addition the range varies significantly depending on what county you’re in, - go figure 🫤 . Up to 90% or so of the B12 in your blood may be an analogue , which your body can’t use. This is another reason why the serum B12 test is not fit for purpose. Maybe your Gp can do an “active B12 “ test? Some do now.

my personal experience was that both GP and harmatologist were clueless / dangerous when it comes to vitamins. If I hadn’t have done my own research and fixed the problem myself ( with very high doses of vitamins) I would have probably been diagnosed with early dementia! I was at the point of having to give up work and driving, couldn’t remember names of people/ things, was dropping stuff, could feel my arms , dizzy, exhausted, kept losing central vision. My GP said my results were fine !!! My B12 was 5 points above the bottom range. Being in range does not equal excellent health.

Great book ‘Could it be B12?’ by Sally Pacholok, which also covers folate as the 2 work very very closely together.

A family member who trained as a Doctor told me in her 7 years of training they spent ½ a day on vitamins!

If you need help understanding your test results , on health unlocked there are excellent groups for thyroid and B12. I would recommend them.

If people were dying of taking too many vitamins, this would be all over the news. Dying of taking prescription medication as prescribed by the dr is the third leading cause of death in USA. Why isn’t that on the news! Even aspirin kills thousands of people every year.

Good luck !

[kiwitraveller in reply to Amethist]

Thanks so much for all that info

[Smoothie2020]

I was just prescribed folic acid because my wbc count is on the low side. My wbc has been low forever even before ET entered my life.

[Nikon7]

Due to genetic challenges (MTHFR - compound heterozygous) I have to take Folate. My body, longe before PV, does not properly use folic acid. Only Folate.You may want to consult with a Functional Medicine doc before you supplement with folic acid.

[kiwitraveller in reply to Nikon7]

Thank you for that information