diabetes & B12 Deficiency

[Pa234aw]

Hi all, for the last 4 months I’ve been on the B12 deficiency (possibly PA) path and have assumed that eventually the B12 injections will make me feel better. I’ve had all the classic symptoms. I’ve had the 6 loading doses, 2 further jabs at 6 weeks apart and I’m now on a 4 weekly regime with the UK NHS. I saw little improvement from the 6 loading doses and if there was any improvement after the following two then it was marginal. If anything I’ve felt worse since the last injection.

I fully appreciate that the inevitable advice is that I need more regular injections and I’m currently preparing to SI. However, I’ve always kept an open mind as to whether ‘something else’ could be causing me to feel unwell and I’m wondering about diabetes.

If I consider my most obvious symptoms - numbness in feet/hands, blurry vision, thirsty, dry mouth, increased peeing, and the fact that I unexpectedly lost weight some months before my B12d was spotted, all the signs point to diabetes, or pre-diabetes. I did have a diabetes blood test around the time my B12d was spotted. It was low but within normal range. My quick research gives conflicting information in that diabetes can lead to B12d, and that B12d can cause diabetes! A chicken and egg scenario!

I’m planning to ask my GP for another diabetes blood test but I was wondering if anyone on here has started out thinking that B12d is their primary problem only to find that diabetes was also involved or perhaps the main cause of their symptoms and illness.

Thanks.

[Nackapan]

Yes a good idea to have more testing.You can get a blood test that gives you an average blood sugar test over? 6 months. Type 1

Or the finger prick after not eating or the trst fir type 1( ax a start)

Also other tests for type 2 diabetes.

Before diagnosis my husband gave up caffeine all alcohol to stop weeing so often.

Also hoping water would quench his thirst better

Got more and more fatigued.

Lost weight.

Shut down

Staring into space.

Again medics didn't think diabetes as 30 an unusual age to get type 1 .

Then a male cousin also got it at 31 !

Genetics

His first venous blood sugar was 20!

Should be around 4 -5

,They were amazed he functioned at all.

Tablets were tried.

Then hospitalised to start insulin on a syringe pump.

B12 was not even considered.

When is it ??

When I got ill and started to read up on here and everywhere on my small phone.

Only screen I could cope with as text still fades from the right as I read or type.

I also read about links .

I urged him to get tested for B12 deficiency.

He was only weary ( probably looking after me )

But scared enough by me to get tested.

His B12 serum test result was

191 pg/ml ( 200-900)

No action from G.p. stated normal ?

He took a miniscule daily dose of 10mg B12 in tablet form.( irritated me at the time when 4000 didn't work on me in tablets)

Too my suprise his next test result was 336!

Didn't feel much different

So not another autoimmune disease but well worth 'nipping in the bud' slowe absorbtion from food.

He has never stopped taking the b12 daily supplement since.

Another suprise as doesn't take anything else.

Obviously 4x insulin injections daily.

It's when the blood sugars come back high you have problems.

Not sure what your low reading meant .

Unless a fasting test ?

You ard right many things do come together.

My last G.p kept testing TSH and kidney function.

My cholesterol total went up

My ferritin down.

Folate shot up quickly on 200-400 folic acid to above range was 5

3 monthly blood tests G.p wanted to go convinced my symptoms could not all be B12 related.

My trigger was the menopause .

So hormonal drops for men could be a trigger too.

Severe vitamin D deficiency my other sign in Hindsight.

Still struggle to keep it in the 70s even taking 3000iu D and k2 daily?

Sometimes the more you look the more you see on bloods with no answers at times .

My bloods gave little information in relation to how ill I was.

Once on B12

I suppose we need a 'mean' measurement .

And a test when fit and well to see what our individual body blood levels are !

I have always had to eat small and regular meals as my blood sugar runs low as metabolic rate good.

As a machine here I've done random blood sugars when shaking but okay 👍

Now my body has changed .

Old rules don't apply .

It's not just age !!

I can seperate .

I think PA/ b12 deficiency and needing high doses puts everything else out of kilter .

But until more research is done at least flooding our systems with B12 gets some to the right place thank goodness .

Feeling worse in early b12 treatment happens .

Waking up redundant cells ca be painful.

Waking up your nervous system feels lije anxiety.

Headaches/ migraine with?blood pumping round .

So keep going .

Improvements happen.

For me alot of time needed.

A roller coaster of the worst kind.

I was the opposite had an overwhelming response and felt like I was being poisoned at times.

[Pa234aw in reply to Nackapan]

Thanks Nackapan for the comprehensive reply. I’m definitely going to get diabetes checked out as I don’t want to close off any avenues. Plus Vit D (although I’m taking a combined D3/K2 supplement) and try to get folate checked again (not taking any folic acid at present).

I’ve got my next B12 injection tomorrow so will watch for any ‘reversing out’ effects. Last time heart palpitations and feet numbness were worse for a day, and a bit scary, but went away.

[topazrat]

I have diabetes, as do most of my family, so there must be a genetic thing going on. The jury is out on what sort it is, as some of us are on insulin, some on pills, and some on just diet and exercise. Dad also had diabetes and P.A., but at the moment, nobody else does, (apart from lucky old me) so the jury is out, unless other family members go on to develop P.A also.

[Calise]

Have you had your thyroid checked? Your symptoms could be consistent with being hyperthyroid. Hashimotos (which is autoimmune) often starts with a hyperthyroid phase.

[Gambit62 Administrator]

Main links for diabetes and PA:

Type 1 - autoimmune disorders - some genetic variations have recently been identified that explain why auto-immune disorders tend to cluster.

Type 2 - use of metformin

Type 1 is associated with weight loss.

B12 deficiency can lead to issues with the Krebbs cycle - the way your cells burn sugar to produce energy and mimic some of the symptoms associated with diabetes. There have even been some cases where B12 deficiency has lead to keto-acidosis.

[Hockey_player]

Did you do a fasting or non-fasting diabetes test? I think the fasting one is more accurate.

[mauschen]

You could ask for an HbA1c test. This demonstrates an average blood sugar over a 3 month period.

This is a good indicator of whether further investigation is necessary.

Depending upon how low your B12 stores were when you started supplements, will determine how long your symptoms will take to recover.

I had classic Stmatitis and Glossitis which was extremely painful, it took months to recover as the damage was already done.

I was diagnosed PA in 1986 and type 2 diabetes in 2016.

[Allyhigha]

No-- It was always B12 for me.