Help! Type 1/Lada or Type 2
- Thread starter slummymummy
- Start Date
Excellent news Ali, I hope you get what you want from the appointment. Being incredibly nosey......how much does the initial consultation cost? Just so I may be able to persuade my other half into going private.
Between £200 and £250. I think you need to give hubs a list of the long term, life changing side effects of running high. Does he want to lose his driving licence through retinopathy? Or his feet or the feeling in his hands and feet? I want my levels down pronto, i do not want any of the side effects. His has gone on long enough, if he feels anything like I do most of the time, he should be beating an endo's door down!
Good luck!
Ali
Good luck!
Ali
Hi Ali,
He is fully aware of the implications of high blood sugars.......he will have a seemingly useful appointment with someone and think 'yes, this is it, I am finally getting somewhere' and then only to find when he gets a letter, he is no further forward. I think we need to write a letter to the hospital and ask to see a consultant and if we get nowhere with that, then we will have no alternative but to go privately. I'm assuming the £200-£250 is purely a consultation fee and any tests will be charged on top of that?
I just don't understand how and why they won't/don't listen to patients. When my husband is telling them he is low carbing in some attempt to control his blood sugars - it means he is! They only have to look at him to see he is very slender and combined with the meds they have him on......it is simply not working :-(
He is fully aware of the implications of high blood sugars.......he will have a seemingly useful appointment with someone and think 'yes, this is it, I am finally getting somewhere' and then only to find when he gets a letter, he is no further forward. I think we need to write a letter to the hospital and ask to see a consultant and if we get nowhere with that, then we will have no alternative but to go privately. I'm assuming the £200-£250 is purely a consultation fee and any tests will be charged on top of that?
I just don't understand how and why they won't/don't listen to patients. When my husband is telling them he is low carbing in some attempt to control his blood sugars - it means he is! They only have to look at him to see he is very slender and combined with the meds they have him on......it is simply not working :-(
slummymummy said:
Hi Slummymummy
I think in that letter you will also need to insist that a c-peptide test is done. Diet, exercise, and oral meds alone will not help your hubby if he doesn't produce enough of his own insulin anyhow. This was the case with me.... and they threw so many drugs down my throat that clearly weren't working. Insulin is much better and obviously for good reason when you don't produce enough anyhow. Private is more expensive for sure... I've been spending to much money on my health really in past 5 years or more.... but it has to be done. Wishing you all the best
Three months minimum here to see an endo, one week if you go privately! Yes test costs on top of that. He needs to jump up and down and refuse to leave until he gets what he wants.
Ali
Ali
slummymummy said:
In the past - though not for an endocrinologist - I've found a good way in is to phone the consultant's secretary and discuss things with her. So far I've found them incredibly helpful.
You just need to get through to the hospital switchboard and ask to speak to 'Mr So-and-so's secretary' and they should put you through. Then go at it sideways - 'I'm dreadfully worried about my husband. How do we go about getting an appointment with Mr X himself?' and see where that gets you. At the very least she should bring your name to the attention of the great man himself.
Worth a try! Good luck
Viv 8)
Hi Ali,
Many thanks for the info. We have still had no copy of the letter to the GP following the GAD antibody test and the coeliac test. results
Many thanks for the info. We have still had no copy of the letter to the GP following the GAD antibody test and the coeliac test. results
Hi viviennem,
Many thanks for that idea; that is what I shall be planning to do on my day off this week. I shall also chase up the lack of letter following the test results some weeks ago. Is it normal for NHS endo clinics to take 6 weeks or so to send a letter to a GP?
Many thanks for that idea; that is what I shall be planning to do on my day off this week. I shall also chase up the lack of letter following the test results some weeks ago. Is it normal for NHS endo clinics to take 6 weeks or so to send a letter to a GP?
Hi there Slummy Mummy,any progress, hope you have had a stress free week.Was just wondering what your husbands HB1AC was. Many LADAs seem to have a low one,mine was 5.7 which baffled the doctor.But common sense says that as I was having so many lows, not eating a lot (as eating always used to make me feel ill, I know why now!) and running 3 mile a day, it would be low wouldnt it as its an average x
Update: We have been waiting for the hospital appointment which seems to have taken forever to arrive. Following an appointment today with the hospital, fortunately the Dr we were supposed to see was called away and so we saw the consultant. Told him what a restricted low carb diet OH was following and still high blood sugars and spoke about the random phone call we had had for coeliac and GAD antibodies and gave him the full run down on the hx to date.
He listened and agreed that this is LADA and has now prescribed insulin. In one sense feel very relieved that at least we now have the correct diagnosis (even though it has taken us 5 years to get to this stage :-( ) but also feel apprehensive about the effects etc of insulin and how this will impact on OH's employability status in the armed forces.
He listened and agreed that this is LADA and has now prescribed insulin. In one sense feel very relieved that at least we now have the correct diagnosis (even though it has taken us 5 years to get to this stage :-( ) but also feel apprehensive about the effects etc of insulin and how this will impact on OH's employability status in the armed forces.
Hey slummymummy!
So glad you have got your answer and your partner can get the treatment he needs. I hope it doesn't mean losing his job, but I'm sure you both know that health has to come before job - and you couldn't go on as things were.
Take care and I hope it all works out well for you both.
Smidge
So glad you have got your answer and your partner can get the treatment he needs. I hope it doesn't mean losing his job, but I'm sure you both know that health has to come before job - and you couldn't go on as things were.
Take care and I hope it all works out well for you both.
Smidge
Hi Smidge,
Many thanks for taking the time to reply. I am just so relieved that finally someone has listened to us! I think the consultant was somewhat shocked at the whole debarcle. It was reassuring to finally not have someone dismiss us without a second thought and treat us like we were intelligent people. He was visisbly horrified at the hx. So now we have to wait 1-2 weeks to see the diabetic nurse regarding the insulin. I guess that is our next adventure.....feeling quite nervous about it!
Many thanks for taking the time to reply. I am just so relieved that finally someone has listened to us! I think the consultant was somewhat shocked at the whole debarcle. It was reassuring to finally not have someone dismiss us without a second thought and treat us like we were intelligent people. He was visisbly horrified at the hx. So now we have to wait 1-2 weeks to see the diabetic nurse regarding the insulin. I guess that is our next adventure.....feeling quite nervous about it!
At last, proper help. Pleased for you, it is more important hubby gets well again, hopefully his job can be sorted.
Got my blood tests next week, on hols until then.
Ali
Got my blood tests next week, on hols until then.
Ali
Thanks Ali for your message. Hopefully things will improve now someone has finally listened and we have a revised diagnosis. Feel very nervous about insulin.....it almost feels like jumping from the frying pan in to the fire.....although I know he needs it! Just feel nervous about hypos etc. Still, I'm sure we will get through it.
Hope your bloods go ok and that you enjoy your holiday.
Hope your bloods go ok and that you enjoy your holiday.
Mmmm, yes, I know how you feel. I have been taking Victoza, it isn't working and this morning's fasting of 9.4 is terrible. Back to work today so omelette for breakfast to try and limit any rises. I think insulin is all that is left for me now. Roll on Thursday for the tests and hopefully some swiftish results.
Let us know how you get on.
Ali
Let us know how you get on.
Ali
Hi,
You are not alone. I have been going through something similar over the last 2 and a half years.
Initially diagnosed as type two I have never responded well to medications. I am now on Metformin, Sitigliptin and Glyczizide. I went on a very low carb diet and managed to get my blood sugars down to single figures for a few months. Like your partner I have lost a lot of weight(over 4 stone) mainly from restricting my diet because the meds are not working. (After contracting a nasty Flu Virus my sugars have now shot up to 15-20.)
Unlike your partner, however, I asked for the GAD test for LADA and was refused. No one seemed able to give me a reason for the refusal but apparently it is expensive.
The policy of the NHS seems to be avoid spending any money on Diabetes if at all possible. If your partners Diabetes does not respond to tablets they will put him on insulin. I have now been told I will probably be going on insulin but can't be seen until mid February. I will again be pushing for the GAD test but do not hold out much hope.
How did you get the GP to agree to do it? Any help greatly appreciated.
You are not alone. I have been going through something similar over the last 2 and a half years.
Initially diagnosed as type two I have never responded well to medications. I am now on Metformin, Sitigliptin and Glyczizide. I went on a very low carb diet and managed to get my blood sugars down to single figures for a few months. Like your partner I have lost a lot of weight(over 4 stone) mainly from restricting my diet because the meds are not working. (After contracting a nasty Flu Virus my sugars have now shot up to 15-20.)
Unlike your partner, however, I asked for the GAD test for LADA and was refused. No one seemed able to give me a reason for the refusal but apparently it is expensive.
The policy of the NHS seems to be avoid spending any money on Diabetes if at all possible. If your partners Diabetes does not respond to tablets they will put him on insulin. I have now been told I will probably be going on insulin but can't be seen until mid February. I will again be pushing for the GAD test but do not hold out much hope.
How did you get the GP to agree to do it? Any help greatly appreciated.
You will be fine :thumbup:
I was also worried about quite a lot of things before switching. I now wish i'd switched earlier !
