Feedback from Haematologist

[hall2]

I’m a bit confused! I’ve just had the routine telephone appointment with the haematologist. I’m on Pegasys 90mcg every three weeks. I’ve been told I have pre diabetes as my level is 42 and a while ago I was told I had early signs of fatty liver. I’ve been on the NHS pre diabetes programme for the last few months having cut out loads of sugary stuff and adjusted my diet. I wasn’t overweight when I started but since then I’ve lost nearly a stone. Haemo says she’s not worried about my level of 42 but I mustn’t lose anymore weight or she will be worried! Pegasys is working as platelets are 267. She told me that Peg is not associated with pre diabetes but I thought I’d read that there is a danger of developing diabetes while on it. Can anyone shed any light on this or has anyone had a similar experience?

[hunter5582]

You are correct to think that Pegasys can cause diabetes.

Blood sugar problems. PEGASYS may cause low blood sugar (hypoglycemia), high blood sugar (hyperglycemia) or diabetes. If you have high blood sugar or diabetes before starting PEGASYS, talk to your healthcare provider before you take PEGASYS. If you develop high blood sugar or diabetes during treatment with PEGASYS, your healthcare provider may tell you to stop PEGASYS and prescribe a different medicine for you.

rxlist.com/pegasys-drug.htm

online.epocrates.com/drugs/...

I expect that what the hematologist is saying is that this does not appear to be an issue for you. Suggest you let your care team know you would like to have a more detailed explanation of why it is not a concern in your case. If you remain concerned, suggest you consult with an endocrinologist who specializes in diabetes.

All the best.

[hall2 in reply to hunter5582]

Thank you for your reply. I’ve been on the NHS diabestes prevention programme for a few months and made major changes to my diet and exercise routine. I want overwiight but I’ve lost nearly a stone. Perhaps I need to phone the specialist nurse to try and get a clearer answer

[hunter5582 in reply to hall2]

I expect it would be for the best to get a better explanation from your care team. I also flutter in and out of the prediabetes range. I lost about 60 pounds a few years ago but put 20 pounds back on during COVID. Working to lose the 20 pounds back again.

All the best.

[Wyebird]

that’s strange I too am now prediabetic and I too also read somewhere that there might be a link. I’m reading 41. After losing 3/4 of a stone I’m still 41. I need to lose at least anothet3/4 stone to be in normal weight range.

[Hopetohelp in reply to Wyebird]

Me too. Borderlineish at 46. Need to lose weight. I am sure that would help but not easy. I got it down to normal by cutting out sweet stuff but it has crept up again without the sweet stuff

[hall2 in reply to Hopetohelp]

that’s what has happened with me! I’ve cut out most sugary apartfrom the odd treat but it’s making no difference!

[Wyebird in reply to Hopetohelp]

are you on Peg also?

[Hopetohelp in reply to Wyebird]

yes

[hall2 in reply to Wyebird]

Thanks for your reply. Are you on peg too? The haemo said she’s not concerned about me being 42 but that I must not lose any more weight or she will start to worry. I’m just confused! I wasn’t overweight to start with and I’ve always been very active! So do she want me to stuff myself with puddings and cakes?

[Wyebird in reply to hall2]

just read read the last part of your post. Yes stuff yourself but not with sugar. My prediabetic course has allowed me to eat pasties but not sweet pastries. Nuts but not chocolate nuts. Brown bread sandwiches and boiled eggs but not sugary snacks. Full bodied milk cream and butter. Good luck.

[hall2 in reply to Wyebird]

Thanks I do a lot of this as I’m on that course as well and it’s making no difference!

[Wyebird]

yes started last June 2021z diagnosed prediabetic this January was about 36 went up to 41. I am still a little over weight. Despite losing some I’m still 41. My heamo doesn’t think there is a connection

[hall2 in reply to Wyebird]

No mine also said it didn't cause prediabetes which is why I'm confused!

[Wyebird in reply to hall2]

I should have raised it in the forum I attended on Friday. Will be interesting if anyone else is in our position

[hall2 in reply to Wyebird]

Raising it in a forum is a good idea.

[Wyebird in reply to hall2]

I’m in clinic on 24th at guys if I remember I’ll raise it again

[hall2 in reply to Wyebird]

Great thanks!

[Poppy6060]

Hi hall2 how strange I have PV and on Pegasys and a few months ago was told I have pre diabetes level 43 before starting Pegasys I was told my levels were in normal range I have told my specialist nurse and she wasn’t worried but think I should have more blood tests to keep eye on things best wishes Poppy

[hall2 in reply to Poppy6060]

Hi Poppy thanks for your reply. Yes raising it at a forum is a good idea. I’ll do that if they have another online one.

[Wyebird in reply to Poppy6060]

Poppy 43 is prediabetic go on line and see if you can do an NHS course ( Uk) only.

[hall2 in reply to Wyebird]

I have been on the NHS prediabetes course for several months and I’ve been following the advice and it’s made no difference! I’m still 42. I suppose I need to carry on and hope it stays at that level!

[Wyebird in reply to hall2]

oh dear same here. I have 1 month to go.

[EPguy]

There seems to be two ways A1c is reported, a standard (mmol/mol) used here and an old style in %. I was confused till I realized that. Some labs in USA still use the old one.

Here is a site that converts them:

hba1cnet.com/hba1c-calculator/

For example my results are in the old system and are sort of high but in range at 5.4-5.6%. This converts to 36-38 in the standard method.

[hall2 in reply to EPguy]

anks I’ll have a look at that.Th

[hall2 in reply to EPguy]

Sorry bad typing. I’ll have a look at that website.

[EPguy in reply to hall2]

I guess you don't need to worry about it since you already have the up to date method. But for some of us in the old fashioned US who don't recognize these we now know we're out of date (just like our good old "British" measuring system)

[hall2 in reply to EPguy]

I wasn’t taught the metric systems at school so I’m still with the older ways too!