sugar and tingling with ET

[Pounds11]

I’ve cut out almost all sugar but yesterday I saw and ate a delicious looking ginger cookie after a long walk on the beach. And noticed some tingling in my fingers. As I look back a few weeks ago I enjoyed a piece of carrot cake. Same thing. Since my hyper aware symptom checker called my brain worries about these things I was wondering if any one else has this happen? Or if I’m being overly sensitive? I’m on hydrea every other day I know this is not a pressing issue just curious Thx for this wonderful forum marti

[Joetcalr]

Hi Marti, that’s very interesting, maybe it’s the ginger not the sugar? Before I was diagnosed I had a period of several years where I was very sensitive to ginger in that it made my skin itch, so somehow ginger combined with very high platelets … Once I was on hydroxy and the platelets came down no problem with ginger. Best wishes Jo

[SuET2017]

I also cut out refined sugars in December last year and now when I have sugar I feel really unwell. It’s not tingling as you describe, it’s more fatigue and general blah.

I have been far less ET symptomatic since cutting out sugar and a general anti inflammatory diet (I’m not fanatical about it)

[saltmarsh]

Interesting. I'm on daily hydrea for the last 2 years and it seems to me that my body is generally more sensitive to what I consume. No scientific basis whatever but I'm much better off since I carefully monitor my diet particularly with regards to limiting/eliminating rich, sugary food and alcohol. Small price to pay but I guess we all need to figure out what works and what doesn't. As others have pointed out, the Mediterranean diet is a good foundation. Good luck on this journey.

[Pounds11 in reply to saltmarsh]

thank you for all your responses. Yes I have followed a primarily Mediterranean diet for years. No alcohol but did like my sugar. Sometimes I succumb but less and less

[Janis12]

Hi, I cut out sugar for one year which resulted in weight loss that I could ill afford. My reason was the anti inflammatory aspect of being sugar free although I did not consume huge amounts but I do like a piece of cake or fruit scone whilst out cycling. So after a year I notice no difference what so ever, still had the aches a pains and gradual rise in platelets. So I decided to go back on it and nothing changed apart from the sheer delight of having a lovely bit of cake again and putting on 2-3 pounds. Just my experience, we are all different.

[George1976]

I’ve had the tingling from sugar and I believe it is related to neuropathy. Was worse when my platelets were around 800k. I’m down in the 400k range now.

Different forms of neuropathy could have symptoms triggered by sugar. Platelets too can be involved in neurological issues. ncbi.nlm.nih.gov/pmc/articl...

A spine surgeon once told me sugar makes nerves swell. So I avoid it’s as much as possible or eat a good bit of protein before the sweets. Hard to resist a good milkshake!

In my case I have neuropathy from unknown causes but I suspect it’s related to an autoimmune condition that started after 4 years of Pegasys. Not sure the peg was involved or if it was coincidence. Im still pursuing a diagnosis and plan for autoimmune issue with a new rheumatologist. My autoimmune seems to be somewhat linked to my MPN as it is showing as mild hemolytic anemia which is related to Lupus.