HbA1c : Diabetic!! Does PV/HU affect blood sugar?

[Innessant]

Male 67, PV for 10 years. Asymptomatic .Taking aspirin and 500mg Hydroxyurea daily.Feel great.

I have recently been declared "diabetic" with an A1c level of 63 Mmol/mol (7.9%).

Have had high blood sugar readings for 20 years. Fit, BMI of 24 (not overweight) and no symptons of diabetes.I am now cutting down on carbs and sugar to lower the A1c but fear I will go underweight.

Has anyone else experienced this?

[hunter5582]

The two issues may be unrelated; however, it is worth noting that HU can cause renal impairment and may affect blood-sugar readings. Suggest that you consult with both the MPN Specialist and the endocrinologist or nephrologist. Would also suggest the care teams consulting about the MPN and diabetes collaborate on your case.

While the two conditions may be unrelated, the body is an integrated system. Even unrelated conditions and their treatment can have impact on each other.

Note that it often falls to the patient to ensure that integrated holistic care is provided by the various care teams. Acting as our own advocate and case manager to ensures optimal care.

Please do let us know what you learn and how you get on.

[Innessant in reply to hunter5582]

Thanks Hunter.Balanced advice as always and I agree that we must be our own advocate. In my case I will try to lower the numbers by diet and exercise as I feel this is logical.An older body ( pancreas/liver) is simply is less efficient in handling glucose .

[Wyebird]

I’m prediabetic so did a prediabetic course. It was fantastic. It’s all about the sugar and not fats. I now eat pasties. I’d always stayed clear because of the fat content. So you can eat away but not sugars. If you are in the uk you can request to do it.

Most people like myself ( overweight)can reduce their sugar intake through calories.

Now if really hungry I make myself a sandwich instead of a biscuit. I do fail sometimes though and am still prediabetic.

[Innessant in reply to Wyebird]

Thanks for the encouraging news. Yes I am going to cut sugar and carbs. Keep at it Wyebird...and let me know how your numbers go. I am glad I had this wake up call.

[Wyebird in reply to Innessant]

Hi a yr later and I’m up 1 point (43) I’ll have it retested in January. I must admit my sugar intake is creeping up. Your post has promoted me to keep on top of it.

If I’m the uk please try and do the course. It’s so interesting.

[Wyebird in reply to Innessant]

Just had result of diabetes test I now am no longer prediabetic🤗. My latest reading is 40. I can’t believe it. I’m wondering if it’s because I now take my Peg injection every 25 days and not every 14.

[Otterfield]

I can't say anything useful about diabetes, but I can say that I lost weight eating low carb. I reached a healthy weight and stayed there, while still sticking to the same diet. My body seemed to just find its healthy point. Years later, I used a high carb diet to deliberately gain weight after I became seriously underweight with MF.

[Innessant in reply to Otterfield]

Thanks Otterfield. Every story is different and you seem to have learned what works for you. Hope you are okay with the MF.

[Otterfield in reply to Innessant]

I've had a stem cell transplant which in theory is curative. Some of the jak2 mutation has crept back but they are treating it with donor lymphocyte infusions. The consultant has told me I'm a "work in progress" so I remain hopeful.

[Jsb45]

I have trouble with my sugar levels as well. I have found that fasting 24 hours every other day works well for me. And, just recently that if I stop eatting at 6:00PM that I have much better morning glucose readings. Just my two-cents.

[Innessant in reply to Jsb45]

Thnaks so much JSB. That is a a serious fasting regime.Not sure I could do it. I have also seen the benefits of not eating between 6pm and 8am. As a male, less peeing at night and better sleep.

[Mills55]

Slightly different response here, I have been Type 1 diabetic on insulin for over 40 years and developed ET last year and have been on hydroxycarbamide to treat it.

So far I can’t say its affected my blood sugars at all and my Hab1c levels are about where they were before I started the treatment. As to weight it might not be connected but I have actually increased in weight since starting on the treatment.

Hope that helps and good luck keeping your weight down.

[Innessant in reply to Mills55]

Thanks for the feedback, good to hear. Weight is not my problem really but I do fear for other effects of diabetes hence the concern.

[Yanico]

Hi I had read that A1c reads high as blood cells stay in the system too long. My MPN confirmed that this is the case but could not give an exact figure. I am also very anaemic which can make the A1c read too low!! I too went in a 12 month course for pre- diabetes (self referred). I have no idea now. I was 6.6 now 5.2 a couple of months later. I am sticking to a sensible diet with low carbs and low sugar. I am on rux and come from a family of skinny diabetics.

[Innessant in reply to Yanico]

Thanks for your reply.Good to hear.. I hope I get the same as I prefer to do this without medication. So far so good.