Weight

[sweetpea19]

I’ve been trying to lose weight although it’s a slow process , about 4-5 pounds a month . I’ve had some small reductions in my platelet count and was wondering if it was coincidence or if losing weight helps in any way . I’m on 1,000 mg HU a day and have hovered around 550 on my blood tests for the last year or so . My heamotologist was going to increase the dose but at my last count was 469 so has decided against it now . I’m happy not to have the increase and will continue to try to lose more weight in the hope it’s helping Has anyone else found that loss of weight helps . Thankyou

[Ratton726]

Hi sweetpea19-Your weight loss may be slow but it is better than fast loss!I have lost weight but not on the drugs that you take -just trying to cut down on portion size and carbs/sugar etc etc-it has worked for me-my last reading was 314 (I have E.T)-but the weight loss for me has been quite recent. (To do with other personal problems) I aim to keep weight down -makes me feel good! (I am 76 and have other health problems )!

Be proud of yourself it doesn't matter how small weight loss is -its good that you have tried-keep on trying! Best Luck

[Yvette49]

Hi, I’ll be keen to read answers, I have also been trying to lose weight ( I have PV) for over a year, I have lost 1 stone, but it’s so very slow, I lose now about 2 a month…..

[Cja1956]

I’ve never heard of platelet counts being associated with weight. I am very slim and my platelets hover around 700 at 800,000. I’m post ET MF and I’ve lost about 10 pounds in the past two years. Some medications may cause weight gain, like jakafi.

[hunter5582]

Your rate of weight loss is precisely where it should be for healthy sustained weight control. Losing weight will likely not affect your platelet levels but will definitively help with the cardiovascular risks associated with ET. It will also help with a host of other issues like arthritis. Glad to hear that your platelet levels seem well controlled at your current dose of HU. Do note that 600 i considered to be a target level for platelets by some MPN Specialists. silvermpncenter.weill.corne...

Ultimately it is symptoms that matter most, not numbers on a lab. Provided your symptom burden is well controlled at your current levels then that is an excellent response,

All the best to you.

[sweetpea19 in reply to hunter5582]

Thankyou My haemotologist doesn’t seem to think my platelets are low enough but I don’t want an increase in medication . She seems to only concentrate on platelets and nothing else , I’m not sure she is looking at the whole picture of my ET .I do feel better for loss of weight .

[hunter5582]

Sounds like you are using good judgement. If you are asymptomatic at your current dose then there is no reason to increase it. There is no particular value to lowering your platelets below 450 (normal). If you feel like you current hematologist is not considering the totality of what having ET means then perhaps a seco9nd opinion from a MPN Specialist is in order. Most hematologists do not have the KSAs to provide optimal care for MPNs due to their rarity. Here is a list of MPN expert docs. mpnforum.com/list-hem./