Frustrated Newbie.

[Jimslady]

I really ought to call myself the enigma lady as I don’t know where to put myself. I occasionally browse this forum as tbh reading about illness, not just diabetes, depresses me and I go into scare tactics and OCD/PTSD etc.

I’m wearing quite a few cloaks of autoimmune, MS 40+ years, psoriasis and type 2. Add in a few back aches, quite serious ones and it’s ouch.

D Journey. = 2002 diagnosis after very stressful time. Level 17
From start on medication, metformin. Made me ill. Really struggled. But no Med help. In fact any diabetic medication has made me ill. Trulicity gave me cow Pat syndrome 7 days a week. If you’ve ever seen a cow poop you’ll recognise it. So I live with a higher HBa1c without meds. And a pact with my GP to do tests every 3 months.

BTW I’ve lost over 6 stone over the years

I’ve had a lot on health wise and it’s done a waiver again 104. It panicked me as the app hadn’t got the details but a not from lab they had a warning message.

GP rang, and she listened to me, for once, words came up, insulin resistance and maybe there’s something else we’re not looking at.

I told her I feel as fit as a flea, when taking nothing, as soon as I do everything changes. It’s the same with other meds, so as I have hypersensitivity with those it’s an occasional pain killer.

Now I’m being sent to a diabetic ???? Forget the name to change my lifestyle. Hey-Ho.

 

[Inka]

Welcome @Jimslady 🙂 6 stone is a big weight loss! Were you trying to lose weight or did it drop off unexpectedly? I think you’re saying your latest HbA1C is 104? That is high and a level that high could be causing insidious damage to your body even though you can’t feel it.

I quite understand why you don’t want to take diabetes meds that upset your stomach, but maybe there are other medication options that won’t have that effect? If it were me, I’d be asking about options.

 

[JITR]

As you may know two options are dietary changes and insulin. Have you already cut down on all types of sugar and carbs? How does what you eat compare with this list of foods?

 

[helli]

6 stone is a big weight loss! Were you trying to lose weight or did it drop off unexpectedly?

I think this is a very important question.
With a dangerously high hba1c and large weight loss, there is a possibility that you are misdiagnosed as these are symptoms of Type 1 diabetes and, given how long ago the type 2 diagnosis was made, potentially LADA.

 

[rebrascora]

Also your predisposition to other Autoimmune conditions. Type 2 diabetes is metabolic but Type 1 is autoimmune.
You might feel "fit as a flea" with levels that high and no medication, but sooner or later those high levels are likely to cause a serious complication. Diabetes itself does not necessarily make you feel ill, but it is the long term complications of elevated BG levels which can build up and cause damage to blood vessels and nerves leading to pain and potential damage to sight and kidneys and risk of cardio vascular problems like heart attack and stroke.
It may be that you have reached a stage where you need insulin regardless or Type 1 or Type 2 (although Type 1 usually gives you access to better support and technology, much as that is unfair). Insulin has very few side effects, so you really do need to consider this option and discuss it and the possibility of you being a slow onset Type 1.... Many of us here on the forum developed Type 1 later in life, despite many GPs falsely believing it only develops in children and young adults. I was 55yrs old. It also often has a slow, gradual onset in more mature adults and can appear very similar to Type 2 and respond to Type 2 meds/lifestyle changes i the early stages until you reach a critical point (sometimes triggered by a virus) where you no longer have enough remaining beta cells which produce insulin, to keep your levels in check.

In your shoes I would be asking for Type 1 testing (antibody tests and a C-peptide to check how much insulin you are able to produce) and discuss starting insulin.

 

[SB2015]

This is another vote to ask for a test for Type 1, especially if the weight loss was rapid.
I was surprised how ‘ill’ I had been looking back once I was diagnosed. With an HbA1c so high, and rapid weight loss it sounds a lot more like T1. If you were overweight at the time of the high HbA1c they will often assume it is T2. A common story on here.

 

[everydayupsanddowns]

Welcome to the forum @Jimslady

Unintentional weight loss, high/rising A1c, and a clutch of other autoimmune conditions are enough to get the forum’s ‘spidey sense’ tingling.

We see several people each year who were largely given a diagnosis of T2 diabetes because they were “not a child”, but 50% of autoimmune / T1 / LADA cases are diagnosed in adulthood. And in the case of LADA can even seem to respond to T2 treatment and oral meds for several years, before the gradual destruction of beta cells reaches a tipping point, and exogenous insulin becomes necessary.

The forum’s hunch may be way off (we aren’t medically qualified), but it might help to ask the question and see if you could get checked for cPeptide (how much insulin you can still produce yourself) and diabetes antibodies?

 

[Jimslady]

Welcome to the forum @Jimslady

Unintentional weight loss, high/rising A1c, and a clutch of other autoimmune conditions are enough to get the forum’s ‘spidey sense’ tingling.

We see several people each year who were largely given a diagnosis of T2 diabetes because they were “not a child”, but 50% of autoimmune / T1 / LADA cases are diagnosed in adulthood. And in the case of LADA can even seem to respond to T2 treatment and oral meds for several years, before the gradual destruction of beta cells reaches a tipping point, and exogenous insulin becomes necessary.

The forum’s hunch may be way off (we aren’t medically qualified), but it might help to ask the question and see if you could get checked for cPeptide (how much insulin you can still produce yourself) and diabetes antibodies?

I’ve been away from reading as life took over.
Thank you for your advice.

 

[Jimslady]

Welcome @Jimslady 🙂 6 stone is a big weight loss! Were you trying to lose weight or did it drop off unexpectedly? I think you’re saying your latest HbA1C is 104? That is high and a level that high could be causing insidious damage to your body even though you can’t feel it.

I quite understand why you don’t want to take diabetes meds that upset your stomach, but maybe there are other medication options that won’t have that effect? If it were me, I’d be asking about options.

I apologise for not replying before. The meds didn’t just upset my stomach, they changed me. Living with a monster was one expression. I’ve done most of the options and my body doesn’t tolerate things.

This new GP is really on the ball and have an urgent referral to a complex diabetic clinic. She’s seen a couple of cases with similarities and going via this route have got them into seeing an endocrinologist earlier.

I live in hope.

 

[Jimslady]

I think this is a very important question.
With a dangerously high hba1c and large weight loss, there is a possibility that you are misdiagnosed as these are symptoms of Type 1 diabetes and, given how long ago the type 2 diagnosis was made, potentially LADA.

Diagnosed in 2002/3 not quite sure.

About a year after had a trauma.