Confused newby

[Sugarplum80]

Hello! I’m 40, live in Bucks. Suspected T2 and tbh I’m not sure I should be here. I’ve joined to get some advice / perspective. Today I was told by my doc that I’m not diabetic.

- HbA1c 38
- BMI 42 (was 45 but hit ‘the fast 800’)
- fasting blood glucose 8.2mmol/l.
- All the diabetes genes according to 23andme. Relatives who are T2.
- My skin feels numb and I find myself scratching just to feel something.
-Fasting blood glucose 8.2mmol/l.

HbA1c of 38 - and had a similar result last year. I’ve felt diabetic for a long time. Always thirsty, sleep after meals, terrible feet, sweet smelling pee (sorry) and thinning hair. Unfortunately no unexplained weight loss.

Any advice? Am I diabetic? Feel a bit lost for what do.

 

[Sugarplum80]

Thanks Anitram. If it’s not possible to be T2 with an HbA1C of 38 then I’m relieved obviously.

 

[Leadinglights]

Your symptoms do seem consistent with diabetes so it is perhaps unexpected that your HbA1C doesn't confirm that diagnosis. I wonder if there is some medical reason for the lower than expected result, for example, people taking iron or vit B12 supplements for certain anaemias can falsely test low.
If your symptoms continue I would seek additional advice as it must be unpleasant to be suffering those symptoms with no real explanation.
Somebody else may have some suggestions.

 

[Sugarplum80]

Hello Leadinglights. Something masking my test results is exactly what I’m thinking..

I’m going to do some digging related to your mention of anaemia, since 23andme says I have Hereditary Hemochromatosis (HFE‑Related). Somewhere to start. Thank you so much!!!!

 

[Leadinglights]

Hi Sugarplum
There is a link between hemochromatosis and diabetes evidenced in some of the literature. There are certain haemoglobinopathies which give falsely low (or high) HbA1C results. Does your GP know of the hemochromatosis as they are often sceptical to consider private genetic tests people might have had done. Have you actually been diagnosed with hemochromatosis and are you receiving any treatment.?

 

[Christy]

Hi @Sugarplum80 . Your gp will only normally refer you for Haemochromatosis genetic tests if you have elevated ferritin levels or increased transferrin saturation levels which can't be explained by other reasons so it would be worth asking your gp to test these in the first instance. Haemochromatosis causes an overload of iron potentially leading to organ damage if not diagnosed early enough. Treatment is by venesection (similar to blood donation). I was diagnosed last year but seem to have escaped any side effects...so far.

 

[Leadinglights]

Hi @Sugarplum80 . Your gp will only normally refer you for Haemochromatosis genetic tests if you have elevated ferritin levels or increased transferrin saturation levels which can't be explained by other reasons so it would be worth asking your gp to test these in the first instance. Haemochromatosis causes an overload of iron potentially leading to organ damage if not diagnosed early enough. Treatment is by venesection (similar to blood donation). I was diagnosed last year but seem to have escaped any side effects...so far.

I gather the 23andme that Sugarplum mentions is an ancestry tracing DNA testing which I assume is not something a G P would undertake. I'm sure the results are accurate but maybe not something the medical profession would rely on as diagnostic but may persuade them to recommend NHS tests.

 

[Christy]

Hi @Leadinglights That's why I suggested the poster requests that the gp looks at ferritin & saturation levels before considering a genetic test if there are any indications to do so.

 

[Sugarplum80]

Hi Leadinglights and Christy.

Leadinglights is right. My doctors surgery is the sort of place you never see the same doctor twice, and haven’t been interested in my 23&me insights as to why I am always sick with lung and ear infections that go on for many months!

I will ask for the ferritin testing, thanks Christy. Historically I've taken high dose iron since it was through the floor 10 (?unit). Apparently 100 is low. I haven’t been diagnosed or even tested. It is a heterozygous mutation for h63d, and considered low risk for the actual condition.

I’m going to try to get the test.
Thank you both I feel like a time waster for the NHS so knowing that there are avenues to explore to get a diagnosis is important to me.

 

[Drummer]

I suppose you could try eating low carb just to see if it makes you feel better.
At home we are fairly low carb, and I took it up when I felt unwell - about 50 years ago. It has always been the right way to eat for me, even though I was not diabetic back then, I just felt more and more not right every time I was pushed to eat the usual diet as printed out by Drs with the assurance that if it is followed it will reduce weight.
There are copies of Dr Atkins New Diet Revolution available on line which could help with menus and recipes.

 

[Leadinglights]

Hi Leadinglights and Christy.

Leadinglights is right. My doctors surgery is the sort of place you never see the same doctor twice, and haven’t been interested in my 23&me insights as to why I am always sick with lung and ear infections that go on for many months!

I will ask for the ferritin testing, thanks Christy. Historically I've taken high dose iron since it was through the floor 10 (?unit). Apparently 100 is low. I haven’t been diagnosed or even tested. It is a heterozygous mutation for h63d, and considered low risk for the actual condition.

I’m going to try to get the test.
Thank you both I feel like a time waster for the NHS so knowing that there are avenues to explore to get a diagnosis is important to me.

I hope you can get some reassurance from your G P and maybe try Drummer's suggestion of looking at you diet to reduce carbs to see if that improves some of your symptoms.

 

[Ditto]

Hello and welcome to the forum @Sugarplum80 🙂