Confused

[Glasgow Dj Bob]

Hi guys i was diagnosed early Feb 2021 with Type 2 and an HbA1c number of 103, only reason i went to docs was because kinda overnight i couldn't see across the road and had a ridiculous thirst, anyway, i got a fright, i instantly went on a diet, which i made up myself as i don't eat veg, on nurses advice, i was 212lb, she also put me on Metformin 3 tablets a day and after 12 weeks my bloods were done again, my HbA1c was now 38 so another doc called me to ask why this dropped so low, i didn't know, he told me to stop Metformin to see if it was my diet or Metformin that was working, i had lost over 2 stone by then with diet and walking an hour a day, 12 weeks later, without Metformin my HbA1c was again 38...but in between times they checked my blood for various other things and Genetic Haemochromatosis was diagnosed with a Ferratin number of over 1000, docs now think my Iron Store had 'overflowed' into my Pancreas causing it to stop it producing correct amount of Insulin and giving me what he called a 'Diabetic Episode' my iron store has now reduced to just over 500 without any medication or medical interventions, so i know i now have a Haemochromatosis issue but i am now unsure if its too early to say i don't have diabetes anymore, doc didn't explain a 'Diabetic Episode' very well, i think he was a bit surprised, and unsure himself, has anyone on here had or heard of anything similar, thanks for taking the time to read this.

 

[Inka]

Hi @Glasgow Dj Bob and welcome 🙂 There was a recent thread referring to haemochromatosis here:

https://forum.diabetes.org.uk/boards/threads/hi-all.94702/

and @Christy has it as well as @Smsmith70 and is a Type 2.

There is also some information here about the link to diabetes:

https://www.diabetes.org.uk/diabetes-the-basics/related-conditions/haemochromatosis-diabetes

.

 

[Christy]

Hi guys i was diagnosed early Feb 2021 with Type 2 and an HbA1c number of 103, only reason i went to docs was because kinda overnight i couldn't see across the road and had a ridiculous thirst, anyway, i got a fright, i instantly went on a diet, which i made up myself as i don't eat veg, on nurses advice, i was 212lb, she also put me on Metformin 3 tablets a day and after 12 weeks my bloods were done again, my HbA1c was now 38 so another doc called me to ask why this dropped so low, i didn't know, he told me to stop Metformin to see if it was my diet or Metformin that was working, i had lost over 2 stone by then with diet and walking an hour a day, 12 weeks later, without Metformin my HbA1c was again 38...but in between times they checked my blood for various other things and Genetic Haemochromatosis was diagnosed with a Ferratin number of over 1000, docs now think my Iron Store had 'overflowed' into my Pancreas causing it to stop it producing correct amount of Insulin and giving me what he called a 'Diabetic Episode' my iron store has now reduced to just over 500 without any medication or medical interventions, so i know i now have a Haemochromatosis issue but i am now unsure if its too early to say i don't have diabetes anymore, doc didn't explain a 'Diabetic Episode' very well, i think he was a bit surprised, and unsure himself, has anyone on here had or heard of anything similar, thanks for taking the time to read this.

Hi @Glasgow Dj Bob I had a ferritin level in excess of 1300 and now at less than 50 due to venesections. Pretty sure it wasn't this that led to type 2 but I can recommend joining the Haemochromatosis UK charity as their advice is great. Have you had the genetic test to confirm Haemochromatosis as high iron/ferritin can be from other reasons. GPs don't always have many patients with Haemochromatosis. I thought it was more likely to lead to type 1.

 

[Glasgow Dj Bob]

Hi @Glasgow Dj Bob I had a ferritin level in excess of 1300 and now at less than 50 due to venesections. Pretty sure it wasn't this that led to type 2 but I can recommend joining the Haemochromatosis UK charity as their advice is great. Have you had the genetic test to confirm Haemochromatosis as high iron/ferritin can be from other reasons. GPs don't always have many patients with Haemochromatosis. I thought it was more likely to lead to type 1.

Hi Christy, i am waiting on my hospital appointment for the genetic test, i told my daughter about this and she managed to go before me, she was told she has both genes and that her ferratin number just needs an eye kept on it. I've heard of this venesection but not a fan of needles so don't know if i could do that, i've had 3 ferratin level tests since my type 2 diagnosis and these results were 1096 - 521 - 767 in that order without doing anything about it...still can't figure out these Hb1Ac numbers which were done at the same time as ferratin tests, they were 103 - 38 - 38 in that order, after the first 38 i came off Metformin and still produced a 38 twelve weeks later, baffling..thanks for your reply

 

[Leadinglights]

Hi Christy, i am waiting on my hospital appointment for the genetic test, i told my daughter about this and she managed to go before me, she was told she has both genes and that her ferratin number just needs an eye kept on it. I've heard of this venesection but not a fan of needles so don't know if i could do that, i've had 3 ferratin level tests since my type 2 diagnosis and these results were 1096 - 521 - 767 in that order without doing anything about it...still can't figure out these Hb1Ac numbers which were done at the same time as ferratin tests, they were 103 - 38 - 38 in that order, after the first 38 i came off Metformin and still produced a 38 twelve weeks later, baffling..thanks for your reply

There are some 'blood disorders' which will interfere with the accuracy of an HbA1C test so the high ferritin would correspond to the high HbA1C. I'm not saying it is definitely that but worth considering as an explanation. You could ask at your appointment.

 

[Glasgow Dj Bob]

There are some 'blood disorders' which will interfere with the accuracy of an HbA1C test so the high ferritin would correspond to the high HbA1C. I'm not saying it is definitely that but worth considering as an explanation. You could ask at your appointment.

Cheers pal, thank you

 

[Glasgow Dj Bob]

Cheers pal,

 

[Glasgow Dj Bob]

Hi Christy, i am waiting on my hospital appointment for the genetic test, i told my daughter about this and she managed to go before me, she was told she has both genes and that her ferratin number just needs an eye kept on it. I've heard of this venesection but not a fan of needles so don't know if i could do that, i've had 3 ferratin level tests since my type 2 diagnosis and these results were 1096 - 521 - 767 in that order without doing anything about it...still can't figure out these Hb1Ac numbers which were done at the same time as ferratin tests, they were 103 - 38 - 38 in that order, after the first 38 i came off Metformin and still produced a 38 twelve weeks later, baffling..thanks for your reply

If you don't mind me asking, how many venesections did it take to get from 1300 to 50 and are these venesections ongoing, thanks

 

[Molly M]

Hi guys i was diagnosed early Feb 2021 with Type 2 and an HbA1c number of 103, only reason i went to docs was because kinda overnight i couldn't see across the road and had a ridiculous thirst, anyway, i got a fright, i instantly went on a diet, which i made up myself as i don't eat veg, on nurses advice, i was 212lb, she also put me on Metformin 3 tablets a day and after 12 weeks my bloods were done again, my HbA1c was now 38 so another doc called me to ask why this dropped so low, i didn't know, he told me to stop Metformin to see if it was my diet or Metformin that was working, i had lost over 2 stone by then with diet and walking an hour a day, 12 weeks later, without Metformin my HbA1c was again 38...but in between times they checked my blood for various other things and Genetic Haemochromatosis was diagnosed with a Ferratin number of over 1000, docs now think my Iron Store had 'overflowed' into my Pancreas causing it to stop it producing correct amount of Insulin and giving me what he called a 'Diabetic Episode' my iron store has now reduced to just over 500 without any medication or medical interventions, so i know i now have a Haemochromatosis issue but i am now unsure if its too early to say i don't have diabetes anymore, doc didn't explain a 'Diabetic Episode' very well, i think he was a bit surprised, and unsure himself, has anyone on here had or heard of anything similar, thanks for taking the time to read this.

All very interesting. I was diagnosed at the start of July as T2. Then got a call to say liver, kidneys etc were all fine. Then a further call to say my ferritin level was high and I had to have a follow up ferritin test in a months time which is actually tomorrow. I wonder what my levels will be like now. You have done amazingly well with your weight loss - I've lost 13lbs so far and that will hopefully continue. I hope someone is able to help you re what a 'Diabetic Episode' is. Good luck!

 

[Glasgow Dj Bob]

All very interesting. I was diagnosed at the start of July as T2. Then got a call to say liver, kidneys etc were all fine. Then a further call to say my ferritin level was high and I had to have a follow up ferritin test in a months time which is actually tomorrow. I wonder what my levels will be like now. You have done amazingly well with your weight loss - I've lost 13lbs so far and that will hopefully continue. I hope someone is able to help you re what a 'Diabetic Episode' is. Good luck!

Well done on your weight loss, it will make lots of difference to you future levels, i was diagnosed at Hb1Ac 103 and got it down to 38 in a couple of months, turns out it wasn't the Metformin as i came off that and remained at 38 after another couple of months and had lost similar weight to yourself over the first couple of months, so this farratin thingy, which appears to have went into my pancreas seems to be playing a part in my diabetes but that number halved in 3 months without vennesection, i didn't know diet could alter these numbers as well, good luck tomorrow

 

[Molly M]

Well done on your weight loss, it will make lots of difference to you future levels, i was diagnosed at Hb1Ac 103 and got it down to 38 in a couple of months, turns out it wasn't the Metformin as i came off that and remained at 38 after another couple of months and had lost similar weight to yourself over the first couple of months, so this farratin thingy, which appears to have went into my pancreas seems to be playing a part in my diabetes but that number halved in 3 months without vennesection, i didn't know diet could alter these numbers as well, good luck tomorrow

I will be doing cartwheels if my numbers improve anywhere near the levels yours have @Glasgow Dj Bob - thanks for your best wishes - I will post how I get on once the results are back.

 

[Gwynn]

Now this is very interesting to me because things don't quite stack up for me.

Initially way overweight and my diet was pitifully bad. Rushed to hospital in a bad way. Things has been deteriorating for quite a long time.

Initial diagnosis in the hospital, T1 HbA1c 140. On insulin and metformin

1 month later new diagnosis T2. HbA1c 46. No meds. Informed that my iron levels were way too high and to stop taking any iron supplements.

Blood glucose levels settled into the normal range and stayed there.

2 months Later HbA1c 39. No meds, less supplements. Lost tons of weight.

So maybe I was also suffering from an iron overload and blew my pancreas up. Is this a real possibility? Or have I mis understood the original post.

If it is right then I will continue my careful new lifestyle but with more confidence.

Anyone got any thoughts on my thinking?

 

[Glasgow Dj Bob]

Now this is very interesting to me because things don't quite stack up for me.

Initially way overweight and my diet was pitifully bad. Rushed to hospital in a bad way. Things has been deteriorating for quite a long time.

Initial diagnosis in the hospital, T1 HbA1c 140. On insulin and metformin

1 month later new diagnosis T2. HbA1c 46. No meds. Informed that my iron levels were way too high and to stop taking any iron supplements.

Blood glucose levels settled into the normal range and stayed there.

2 months Later HbA1c 39. No meds, less supplements. Lost tons of weight.

So maybe I was also suffering from an iron overload and blew my pancreas up. Is this a real possibility? Or have I mis understood the original post.

If it is right then I will continue my careful new lifestyle but with more confidence.

Anyone got any thoughts on my thinking?

Gwynn your story is the similar to mine although i didn't end up in hospital and my Hb1Ac was only 103 at diagnosis, at that point i couldn't see across the road, bit scary as it came on so quick, my lifestyle seems to be contributing to getting this number down as i now take no medication, i'm only at 3rd lot of bloods, since diagnosis, right enough, you have done so well with your new diet, as i say i was diagnosed with type 2 and have since been told, 3 months later, that i may have had a diabetic episode, i was a nervous wreck and didnt understand what that meant, but wonder why this wasnt looked at before goung onto the Metformin..take care and keep up the good work

 

[Gwynn]

Thanks for the reply. A completely new direction there. I hadn't heard of iron overload. It may be wrong in my case but its worthy of further thought.

It's amazing what I don't know.

Sorry for hijacking your thread. It has given me a lot of hope.

 

[Glasgow Dj Bob]

Thanks for the reply. A completely new direction there. I hadn't heard of iron overload. It may be wrong in my case but its worthy of further thought.

It's amazing what I don't know.

Sorry for hijacking your thread. It has given me a lot of hope.

Gwynn, i'm still waiting for my app with Haemochromatosis nurse but these were the words my doc used, my Iron Store level, Ferratin Number came down from over 1000 to just over 500 to just over 700 in 3 months, looks like this number falling, yes fluctuating, has help my pancreas work to a level again that my diabetes has went into some sort of remission, i hope i'm right as i'm basing all my hopes on this

 

[everydayupsanddowns]

I’m not sure if it relates to haemachromatosis, but for those with anaemia (where red blood cell deficiency affects the reliability of HbA1c), there is an alternative test called Fructosamine to replace HbA1c

Welcome to the forum!

 

[Glasgow Dj Bob]

I’m not sure if it relates to haemachromatosis, but for those with anaemia (where red blood cell deficiency affects the reliability of HbA1c), there is an alternative test called Fructosamine to replace HbA1c

Welcome to the forum!

Yeh thank you, something has definately affected my Hb1Ac No as it has fell from 103 to 38 in 3 months with what looks like, just my diet, but as you say, so many other things could be going on, best wait for my first app with haemochromatosis nurse for a more detailed diagnosis, thank you for your message

 

[Leadinglights]

Now this is very interesting to me because things don't quite stack up for me.

Initially way overweight and my diet was pitifully bad. Rushed to hospital in a bad way. Things has been deteriorating for quite a long time.

Initial diagnosis in the hospital, T1 HbA1c 140. On insulin and metformin

1 month later new diagnosis T2. HbA1c 46. No meds. Informed that my iron levels were way too high and to stop taking any iron supplements.

Blood glucose levels settled into the normal range and stayed there.

2 months Later HbA1c 39. No meds, less supplements. Lost tons of weight.

So maybe I was also suffering from an iron overload and blew my pancreas up. Is this a real possibility? Or have I mis understood the original post.
Anyone got any thoughts on my thinking?

*You might find this interesting

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature - PMC

Hemochromatosis is an autosomal recessive genetic disorder resulting in increased intestinal absorption of iron and eventually to iron overload. The onset of symptoms is usually seen around 40 years of age. Iron overload causes tissue damage in ...

www.ncbi.nlm.nih.gov

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature
Kalyani Raju and Srinivas Murthy Venkataramappa1

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature - PMC

Hemochromatosis is an autosomal recessive genetic disorder resulting in increased intestinal absorption of iron and eventually to iron overload. The onset of symptoms is usually seen around 40 years of age. Iron overload causes tissue damage in ...

www.ncbi.nlm.nih.gov

 

[Christy]

If you don't mind me asking, how many venesections did it take to get from 1300 to 50 and are these venesections ongoing, thanks

Im not medically qualified but I understand that many factors can elevate ferritin levels and it is a very individual thing as to how many venesections anyone needs and how quickly they "load" iron. I needed far fewer than initially anticipated. I started on weekly then fortnightly. Levels plummeted quickly and I think I only had about 7 sessions. I'm in maintenance now (《50) and have been for about 9 months. I'm monitored quarterly. Others can take years to bring levels down and load at a faster rate.

 

[Glasgow Dj Bob]

Tha

*You might find this interesting

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature - PMC

Hemochromatosis is an autosomal recessive genetic disorder resulting in increased intestinal absorption of iron and eventually to iron overload. The onset of symptoms is usually seen around 40 years of age. Iron overload causes tissue damage in ...

www.ncbi.nlm.nih.gov

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature
Kalyani Raju and Srinivas Murthy Venkataramappa1

Primary Hemochromatosis Presenting as Type 2 Diabetes Mellitus: A Case Report with Review of Literature - PMC

Hemochromatosis is an autosomal recessive genetic disorder resulting in increased intestinal absorption of iron and eventually to iron overload. The onset of symptoms is usually seen around 40 years of age. Iron overload causes tissue damage in ...

www.ncbi.nlm.nih.gov

Grea

Im not medically qualified but I understand that many factors can elevate ferritin levels and it is a very individual thing as to how many venesections anyone needs and how quickly they "load" iron. I needed far fewer than initially anticipated. I started on weekly then fortnightly. Levels plummeted quickly and I think I only had about 7 sessions. I'm in maintenance now (《50) and have been for about 9 months. I'm monitored quarterly. Others can take years to bring levels down and load at a faster rate.

Im not medically qualified but I understand that many factors can elevate ferritin levels and it is a very individual thing as to how many venesections anyone needs and how quickly they "load" iron. I needed far fewer than initially anticipated. I started on weekly then fortnightly. Levels plummeted quickly and I think I only had about 7 sessions. I'm in maintenance now (《50) and have been for about 9 months. I'm monitored quarterly. Others can take years to bring levels down and load at a faster rate.

Thanks for the helpful info, good luck with keeping on top of it