Still no diagnosis after over six years

enzina · Oct 6, 2016

Hi All,

So, six years ago was diagnosed with T2, put on diet only although at this time my sugar levels once went up to 30 and stayed in their teens and twenties for quiet a while. Metformin and Gliclazide followed and i was constantly very ill and very tired. I lost a lot of weight and that of course pleased me no end. My incompetent GP asked me if i think i could lose any more weight although i already started to look haggard. I also lost a few molars due to constant dental infections.

Anyway, thanks to that forum i finally insisted on a referral to the hospital. The treatment and the advice i have received are second to none but i still don’t know which type of diabetes i have. Two years ago when i first went to the Royal Free hospital they put me straightaway on Lantus. It worked fantastic at the beginning but sadly not so good anymore. The last a1c Test was again 9 and the kidneys are now leaking more protein than before. Dr said, she would like to put me on Ramipril. At the moment i'm taking
6x 500mg Metformin
2x 80 mg Gliclazide
2x 150 mg Pregabalin for nerve pain after two spinal surgeries.

Do you think i should take Ramipril although my blood pressure is brilliant: 119/77/78? I was so proud of it and it was never higher than 125. I have stopped smoking only five weeks ago, am still slim and exercise regularly.

Last year i stupidly believed i will get away with having diabetes, smoking and having dental implants fitted. Two sinus lifts, bone graftings and implant surgeries later…of course they failed and three of the four implants have been removed. Since then i suffer from pain in the ears, the jawline, the sinuses, the throat and the glands on the neck are swollen as well. In the next few weeks I will have several tests etc done. It’s so frustrating, each time such an infection or whatever that thing is, comes back, the sugar levels shoot up. Otherwise they are pretty good but I have to admit I am craving cakes and chocolate so much, I now often buy some. Usually I just go afterwards on a long dog walk on Parliament Hill and then I even have often a hypo.

It's also doing my head in that i still have no diagnosis, each time i have to ask if they could finally do the c Peptides test. Hopefully they do it at the next blood test in February.

I really don’t know if I should now take the Ramipril, the doctor only gave me 1.25mg dose.

So sorry about the rant, the moaning. Wishing you all a nice evening and hope you are in a better mood than me.

All the best
Irene

Freema · Oct 6, 2016

so sad to hear how much you¨are suffering... so sad... hope you will find the best help....from now on

catapillar · Oct 6, 2016

enzina said:
Anyway, thanks to that forum i finally insisted on a referral to the hospital. The treatment and the advice i have received are second to none but i still don’t know which type of diabetes i have. Two years ago when i first went to the Royal Free hospital they put me straightaway on Lantus. It worked fantastic at the beginning but sadly not so good anymore. The last a1c Test was again 9 and the kidneys are now leaking more protein than before. Dr Rosenthal said, she would like to put me on Ramipril. At the moment i'm taking
6x 500mg Metformin
2x 80 mg Gliclazide
2x 150 mg Pregabalin for nerve pain after two spinal surgeries.

It's also doing my head in that i still have no diagnosis, each time i have to ask if they could finally do the c Peptides test. Hopefully they do it at the next blood test in February.

Hi Irene, sorry you are feeling frustrated.

Are you still taking lantus? What sort of dosage are you on? What do your blood sugar levels look like? Has anyone discussed/considered fast acting insulin.

You do know that a cpeptide test won't tell you what type of diabetes you have? All a cpeptide test tells you is whether or not you are producing any of your own insulin. If you aren't, that could be because you are type 1 and your immune system has killed off all of your beta cells, or it could be because you are type 2 and trying to keep up with insulin resistance has exhausted your beta cells. Equally, if you are producing some of your own insulin, that could be because you are type 2 or it could be because you are a honeymooning type 1.

Maybe they aren't doing the cpeptide test because it won't tell them anything useful? If you are getting second to none care at the hospital and getting the insulin you need, does it really matter what type you are - I can see that it is personally frustrating, but clinically, will it matter?

carol43 · Oct 6, 2016

Why does the GP want to put you on Ramipril, horrible stuff, gave me a hacking cough. Your blood pressure seems fine.

donnellysdogs · Oct 6, 2016

I cannot understand why if you are still slim that you are on metformin and lantus. Has anybody considered a bolus/basal regime for you?
You are having a lot of drugs for diabetes and now tgey wanting to add in ramipril?? Seems mad to me with your BP.

Are you still under hospital or back to GP care?

enzina · Oct 7, 2016

Thank you so much for all your replies!

Catapillar, i was told exactly the same thing as you are saying in the Royal Free hospital. The reason why i want the c peptides test done, is to find out if i still need all the oral meds.

Carol, the doctor also said, once on this tablet, i can't get off anymore.

Donnellysdog, i really don't understand why i need Ramipril, they said it should protect my kidneys..

I need to get ready for dog walking and work now. Sorry if i can't reply the whole day, i will get on the forum in the evening again.

Have a great day all.

catapillar · Oct 7, 2016

Based only on your hba1c and without seeing what your post prandial bloods look like, I would agree with @donnellysdogs - you might need to be thinking about a fast acting insulin.

I'm not sure how much the result of a cpeptide test would tell you if you can come off metformin, ramipril or pregabilin. My understanding is if you haven't got an endogenous insulin production Gliclazide is a bit pointless (but I've only got a very fleeting understanding of the oral med situation).

TorqPenderloin · Oct 7, 2016

I agree with @catapillar in questioning the helpfulness of a c-peptide test.

Based on the numbers you've shared, you have an insulin deficiency. That is a fact not an opinion. That deficiency can be overcome in a number of ways: natural insulin produced by your pancreas (which a c-peptide can measure), increased sensitivity to insulin (exercise, weight loss, or oral drugs like metformin), other drugs primarily marketed towards people with type 2...or the most obvious approach which is artificial insulin.

Again, a c-peptide will not tell you whether or not you still need the oral meds. There are plenty of people with insulin resistance who produce no natural insulin. Furthermore, producing no natural insulin doesn't automatically qualify you as type 1.

With all that said, congratulations on quitting smoking. It sounds like you already know how horrible the smoking/diabetes combination is for you health so it's great to see you changing what you can control.

Bottom line: it seems you are pushing for a diagnosis, yet you already have one: diabetes (the type is largely irrelevant at this point). As others have mentioned, it is time to consider talking to your healthcare team about a basal/bolus approach to get your a1c down to safe levels.

Daibell · Oct 7, 2016

Hi. It sounds like you have gone down a similar path to me except I was always slim. There is a strong indication that you are a LADA (aka T1.5). This is the same as T1 but occurs later in life and can come on slowly with a honeymoon period. Just Basal will work for a while and as you indicate you then need a Bolus added. My DN added a Bolus within a month of starting Basal as my readings weren't good enough (she was an excellent DN). I wouldn't worry too much about your diagnosis but do get the right treatment. My surgery still thinks I'm T2 but who cares as I'm now being treated the same as a T1. I had a c-peptide test done privately and it confirmed that my natural insulin level was low. BTW with Basal/Bolus, Gliclazide normally becomes unnecessary. I have 1.25mg Ramipril mainly to keep my GP happy. It's the lowest dose and any side effects are unlikely. It does have some advantages.

donnellysdogs · Oct 7, 2016

Have they tested your urine and given you a creatinine ratio?
That ratio determines how good your kidneys are and whether you need any medication, let alone ramipril..

Please ask what your ratio is before taking ramipril.

enzina · Oct 8, 2016

Thanks again for all your replies! The DN was mentioning a fast acting insulin a few times already but then we decided to see what are the glucose levels like when i finally get rid of all the infections. We just need to find out what it is.

@TorqPenderloin Maybe i really shouldn't push for a diagnosis or better i already got one like you said. Dr Rosenthal agreed to a c-peptides test anyway. I was reading on here, some people got it done privately. I wasn't thinking of that, i do get several things done privately eg. biomechanical podiatry because i need special insoles etc not to mention the dentist. If i don't hear back, i will get the test done privately.
The GAD test came back positive three times now. I also have this terrible necrobiosis lipoidica which Dr Rosenthal thinks is linked to autoimmune diabetes.

@donnellysdogs, the creatinine ratio went up to 6.06, it is steadily rising, the GP thinks that's 'absolutely nothing' but Dr Rosenthat is saying that's beginning kidney disease and we can't repair the damage already done but prevent future damage with that Ramipril tablet. Her own words.

Anyway, i started a really strict diet again and the BG levels went down to 6.7 this morning.

Have a great weekend and good BG levels
Irene

donnellysdogs · Oct 8, 2016

Aaaah, good that you had the creatinine ratio confirmation....

It looks like most tablets for kidneys are multifunctional
To lower blood pressure too.

Ramipril is being advised for kisldneys and providing its tolerated and doesn't lower blood pressure a lot then kidneys are hugely important.....
You do not want renal failure.

There are a host of kidney tablets available, is the doc recommending this aware that your BP is good?

Infections are made worse by high bloods.... So to me I would be attacking the high bloods to help the infections and going on bolus/basal....

enzina · Oct 9, 2016

donnellysdogs said:
Aaaah, good that you had the creatinine ratio confirmation....

It looks like most tablets for kidneys are multifunctional
To lower blood pressure too.

Ramipril is being advised for kisldneys and providing its tolerated and doesn't lower blood pressure a lot then kidneys are hugely important.....
You do not want renal failure.

There are a host of kidney tablets available, is the doc recommending this aware that your BP is good?

Infections are made worse by high bloods.... So to me I would be attacking the high bloods to help the infections and going on bolus/basal....

That's great, may thanks @donnellysdogs ! That gives me peace of mind and i will keep on taking Ramipril.
BG are 6.4 this morning, i'm working today with loads of walking involved.
Have a great Sunday!

Freema · Oct 9, 2016

It seems that most with necrosis lipodica are type 1 http://www.tandfonline.com/doi/full/10.4161/derm.27790. Wish you good luck it seems that many get better skin when the best controlled glucose.

enzina · Oct 9, 2016

Freema said:
It seems that most with necrosis lipodica are type 1 http://www.tandfonline.com/doi/full/10.4161/derm.27790. Wish you good luck it seems that many get better skin when the best controlled glucose.

Thanks so much Freema. xx What amazing levels you have achieved in such short time, congratulations.

Freema · Oct 9, 2016

Thank you I dont know if it can help you but do you eat a lot of rather fresh coconut Oil like 3 tea spoonfulls a Day there are Some very special kinds of short fatty acids in coconut that seems to fight inflamation all over the body also in the Brain later today about lunch I'll find the link that gave me This information and put it here love for you dear

enzina · Oct 9, 2016

Freema said:
Thank you I dont know if it can help you but do you eat a lot of rather fresh coconut Oil like 3 spoonfulls a Day there are Some very special kinds of short fatty acids in coconut that seems to fight inflamation all over the body also in the Brain later today about lunch I'll find the link that gave me This information and put it here love for you dear

Will try that as well, i have tried so incredible many natural remedies in the past but no coconut oil. I also have bought several natural body lotions and am using now Aveeno shea butter because it seems to calm down the inflammation a bit. One of the patches is already pretty deep and the GP told me to cover it with a dressing to prevent accidents and ulceration.

Freema · Oct 9, 2016

Yes it is tiresome as there is no cure yet. Which is worrying ..I dont know if it can be used as lotion dont Think so But guess it Will at least NOT hurt

enzina · Oct 9, 2016

Freema said:
Yes it is tiresome as there is no cure yet. Which is worrying ..I dont know if it can be used as lotion dont Think so But guess it Will at least NOT hurt

No,no i wasn't going to! Will take it orally of course.

Freema · Oct 9, 2016

Still no diagnosis after over six years

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