Hi there, I haven't posted for some time but look in now and again. However Iam having great difficulty now and some help or support would be really appreciated.
My diabetes was diagnosed last year February 2013, after going through last New Year with constant thirst, going to toilet, thrush all the usual symptoms, and my BG levels when tested were in the 30's and off the monitoring machine at times, with an error reading of "HI" I was immediately put onto Gliclazide and Metformin but these were no good and in less than a week was out straight onto Insulin. I was on Novomix 30 to start with but after a month was then out onto Lantus and Novorapid as this suited my working lifestyle and also I wanted to carb count. After a few months my diabetes was well under control I took the regime seriously and constantly watched what I was doing, it good so good when I went on 5th November for my regular check up my HBa1c was only 46.
On 22nd November (a Friday night) I noticed what looked like little red spots on my arm and a couple on my face, I just thought it was a reaction to something but on the Saturday morning there were much more and I thought it was measles, as I've never had measles before, I call NHS 24 and told them about the spots but I had no other symptoms and felt perfectly ok, I was to attend doctors on Monday morning so NHS said unless I start feeling really ill, sickness, temp etc then just to wait and see doc as it sounded like a viral infection. By the Sunday there were much more of these spots like little rashes under the skin and also blisters inside my mouth with blood in them, and my nose was bleeding, again I called NHS and they gave exactly same advice again as I wasn't suffering from anything else it sounded like a bad viral infection. When I woke on the Monday morning 25th November I went to toilet and was passing pure blood I panicked and didn't even bother with NHS 24 my mother in law took me straight to hospital, where within 2 hrs I was diagnosed as having a rare blood condition called ITP (Immune Thrombocytopenic Purpura) which means the platelets in my blood were being killed off. Instead of having a normal platelet count of between 150-400 per unit of blood I had 2 which went to zero next day. I was given an immunoglobin transfusion that night and the next night and immediately put on Prednisolone steroids 100mcg (20 tablets) very high dose so my immune system could be suppressed as that's what is killing my platelets.
The problems I now have which are worrying as well is my blood glucose levels have rocketed so much so that this evening my reading was HI on the monitor, they have been 20's last few weeks but the diabetic consultant that saw me whilst I was in hospital for 2 weeks adjusted my carb to insulin ratio and also lantus amount, she said because I'm on steroids and such a high dose that it's difficult to compensate as readings can be false and not as accurate so it could lead to me taking too much insulin if I try to compensate.
Iam now back to feeling like total rubbish again like I did last year before I was diagnosed with diabetes, I'm constantly going to toilet constantly thirsty, next thing I'm just waiting on is thrush starting.
I'm due back at hospital on Thursday as I have to keep going back weekly to have platelets counted as they reduce steroid dose if they fall to dangerous levels again I'll be re admitted and another line of treatment will be tried. But in the meantime this is affecting my diabetes really badly.
I know it's maybe a long shot but is there anyone else out there who may be experiencing similar? Having to blood disorders that conflict and coping with them? Does anyone know much about ITP? I've read the support groups I know it's a lifetime condition and not curable but living with it and diabetes there is no info possible because it's rare.
Also is there maybe some help or advice people could give me with regards to insulin or how to combat the high blood glucose levels etc. any advice at all would be appreciated as I feel I'm banging my head against a wall.
Thanks very much. Sorry for the war and peace novel.
My diabetes was diagnosed last year February 2013, after going through last New Year with constant thirst, going to toilet, thrush all the usual symptoms, and my BG levels when tested were in the 30's and off the monitoring machine at times, with an error reading of "HI" I was immediately put onto Gliclazide and Metformin but these were no good and in less than a week was out straight onto Insulin. I was on Novomix 30 to start with but after a month was then out onto Lantus and Novorapid as this suited my working lifestyle and also I wanted to carb count. After a few months my diabetes was well under control I took the regime seriously and constantly watched what I was doing, it good so good when I went on 5th November for my regular check up my HBa1c was only 46.
On 22nd November (a Friday night) I noticed what looked like little red spots on my arm and a couple on my face, I just thought it was a reaction to something but on the Saturday morning there were much more and I thought it was measles, as I've never had measles before, I call NHS 24 and told them about the spots but I had no other symptoms and felt perfectly ok, I was to attend doctors on Monday morning so NHS said unless I start feeling really ill, sickness, temp etc then just to wait and see doc as it sounded like a viral infection. By the Sunday there were much more of these spots like little rashes under the skin and also blisters inside my mouth with blood in them, and my nose was bleeding, again I called NHS and they gave exactly same advice again as I wasn't suffering from anything else it sounded like a bad viral infection. When I woke on the Monday morning 25th November I went to toilet and was passing pure blood I panicked and didn't even bother with NHS 24 my mother in law took me straight to hospital, where within 2 hrs I was diagnosed as having a rare blood condition called ITP (Immune Thrombocytopenic Purpura) which means the platelets in my blood were being killed off. Instead of having a normal platelet count of between 150-400 per unit of blood I had 2 which went to zero next day. I was given an immunoglobin transfusion that night and the next night and immediately put on Prednisolone steroids 100mcg (20 tablets) very high dose so my immune system could be suppressed as that's what is killing my platelets.
The problems I now have which are worrying as well is my blood glucose levels have rocketed so much so that this evening my reading was HI on the monitor, they have been 20's last few weeks but the diabetic consultant that saw me whilst I was in hospital for 2 weeks adjusted my carb to insulin ratio and also lantus amount, she said because I'm on steroids and such a high dose that it's difficult to compensate as readings can be false and not as accurate so it could lead to me taking too much insulin if I try to compensate.
Iam now back to feeling like total rubbish again like I did last year before I was diagnosed with diabetes, I'm constantly going to toilet constantly thirsty, next thing I'm just waiting on is thrush starting.
I'm due back at hospital on Thursday as I have to keep going back weekly to have platelets counted as they reduce steroid dose if they fall to dangerous levels again I'll be re admitted and another line of treatment will be tried. But in the meantime this is affecting my diabetes really badly.
I know it's maybe a long shot but is there anyone else out there who may be experiencing similar? Having to blood disorders that conflict and coping with them? Does anyone know much about ITP? I've read the support groups I know it's a lifetime condition and not curable but living with it and diabetes there is no info possible because it's rare.
Also is there maybe some help or advice people could give me with regards to insulin or how to combat the high blood glucose levels etc. any advice at all would be appreciated as I feel I'm banging my head against a wall.
Thanks very much. Sorry for the war and peace novel.
