Newly diagnosed but caused by my other condition - genetic Haemochromatosis

[ChristinaEW]

Hi all, just had a diabetes diagnosis after feeling recently unwell - as haemochromatosis hasn't been managed during Covid and pushing the GP to review me, inc HBA1c. Result was 90 last week. Started on gliclazide. Can anyone share their haemochromatosis-diabetes experience with me please?

 

[grovesy]

We had a member recently join who had haemochromatosis, but I can't remember their name.

 

[Christy]

Hi, it's me that grovesy is referring to. Recently diagnosed with both Haemochromatosis & type 2 diabetes. Had to really push to get 1st venesection session but they are now underway,
covid permitting. I'm pretty sure my diabetes Hba1c 49 was lifestyle induced & not due to GH (genetic haemochromatosis). My gp has thankfully allowed me time to hopefully improve by diet & exercise. I've lost 2 stone 6 on a low carb, normal fat diet. Used this forum extensively, bought a bg meter & am due to be retested shortly. Have you been diagnosed as type 1 or 2? Happy to answer any questions if I can.

 

[grovesy]

Hi, it's me that grovesy is referring to. Recently diagnosed with both Haemochromatosis & type 2 diabetes. Had to really push to get 1st venesection session but they are now underway,
covid permitting. I'm pretty sure my diabetes Hba1c 49 was lifestyle induced & not due to GH (genetic haemochromatosis). My gp has thankfully allowed me time to hopefully improve by diet & exercise. I've lost 2 stone 6 on a low carb, normal fat diet. Used this forum extensively, bought a bg meter & am due to be retested shortly. Have you been diagnosed as type 1 or 2? Happy to answer any questions if I can.

Sorry I could not remember your name.

 

[Christy]

Not a problem🙂

 

[ChristinaEW]

Sorry I could not remember your name.

Hi, it's me that grovesy is referring to. Recently diagnosed with both Haemochromatosis & type 2 diabetes. Had to really push to get 1st venesection session but they are now underway,
covid permitting. I'm pretty sure my diabetes Hba1c 49 was lifestyle induced & not due to GH (genetic haemochromatosis). My gp has thankfully allowed me time to hopefully improve by diet & exercise. I've lost 2 stone 6 on a low carb, normal fat diet. Used this forum extensively, bought a bg meter & am due to be retested shortly. Have you been diagnosed as type 1 or 2? Happy to answer any questions if I can.

Hi, thanks for the reply so quickly. It sounds like your diabetes might be reversible or can be well managed which is potentially very encouraging. And good luck with the venesections which are so important. Having got my Haemochromatosis better controlled which has taken 4 years, next venesection (no 18) due in May was paused due to covid so ferritin levels have shot back up (i seem to load fast) which I think has damaged my pancreas. Diet, weight, lifestyle or a family history are not the cause for me. Time will tell whether medication works or insulin is the answer. Have you found that the diabetes is damaging your eyes or feet?

 

[Christy]

I have no symptoms of diabetes other than raised HbA1c thankfully. I've not been offered any eye/foot checks by gp. It was an incidental finding when reviewing reasons for abnormal liver function tests. There will be plenty of people on this forum however who can help with any of your diabetes questions. Currently on weekly venesections
I have a way to go...

 

[everydayupsanddowns]

Welcome to the forum @ChristinaEW

I confess I don’t know anything much about Haemochromatosis - could you and @Christy give an idiots guide for the uninitiated?

 

[Christy]

Hi 🙂 , it's a genetic condition which makes your body store excess iron. Not curable but treatable with regular venesection sessions (similar to blood donations). If left untreated can lead to diabetes & damage to all major organs. If picked up early enough normal life quality & expectancy is possible. Apparently it's the most common inherited condition you've never heard of. Prevalent in celtic populations. Not always picked up before major, irreversible damage is done. I think I'm one of the lucky ones (so far..). I'm sure ChristinaEW is more knowledgeable than me and can give her perspective. Covid lockdown has been a nightmare as newbies like me couldn't access the service and others couldn't get the venesections they needed to reduce iron overload.

 

[trophywench]

A Welsh chap (born on Anglesey) on our motorhome forum suffers with it, he's lived in England for a good many years, around Leicester somewhere and although he's recently moved to rural north Warwickshire I think he's still been getting his regular treatment in Leicester. ( It's quite possibly a service Nuneaton hospital doesn't undertake anyway, cos though they're usually pretty good at the things they regularly do (like cataract ops) they have to farm out the things they don't and I spose it depends which side of Nuneaton you live, as to where you get referred to)

 

[Oblivious]

Hi, i also have Haemochromotosis but manage to keep it under control after having liver trouble due to it. I wasn't aware that it could lead to diabetes

 

[trophywench]

Yeah - one of its listed possible side effects is its affecting the pancreas, which 'can cause lack of insulin and lead to diabetes'. I'd have thought that was more like Type 3 not T2? Not 3c probably, but ....

 

[ChristinaEW]

Thanks for all the helpful replies. I am struggling to keep my glucose levels down even with the meds, which have been increased further and keeping my carbs and sugar right down. Early days yet I guess to find what helps and what doesn’t.