Newly diagnosed, but long time sufferer

[ITM69]

Dear all ... I hope you can all help to shed some light on the following.

I recently had a raft of blood tests after many, many years of avoiding them ( chronic needle phobe, I'm afraid ). Blood tests revealed that both my haemoglobin and B12 levels were low. My B12 was at the bottom of the scale at 196 ( the scale ran from 195 up to 771 ). The Gp initially told me that the lower end was still considered to be within the 'normal' scale, but I was not convinced at all.

I have been using Proton Pump Inhibitors for almost 29 years now ( normal usage is for around 6 months in patients ). I am turning 50 in a few months, so I was concerned about how my use of the PPI ( Lanzoporasol ) might of affected me. Sure enough, one of the main symptoms listed was B12 malabsorption due to reduced intrinsic factor being produced and in a poor acidic gut environment. I was diagnosed with type 2 diabetes shortly after my wife died from cancer three years ago and I put my exhaustion down to a combination of stress, grief and diabetes. My eyesight, in particular, has really suffered over the last 18 months ( frequent blurring at distance and ghosting/double vision in my right eye are common ... also now very poor night vision when driving, as have to wear glasses ). The point is, I had near bionic eyesight up until recently and I've read that B12 seriously affect eyesight. My Gpwasattempting to pin the eyesight issues purely on my diabetes, but it's under control fairly well and I largely follow a plant based diet.

I've just gone through the loading phase for B12, but should I ask for folate testing and should I insist on B12 jabs every six to eight weeks as opposed to 3 monthly? I also still have to take the PPI - will this affect the B12 in the body ? I am extremely worried about my eyesight right now as it's deteriorated so quickly in just 18 months.

[clivealive Forum Support]

Hi ITM69 how many loading doses did you have and at what frequency - and had your symptoms reached a point where they had stopped improving?

It is likely that the Lansoprazole contributed to your poor absorption of B12 and if you are taking Metformin for your Type 2 diabetes that will have further exacerbate the situation.

Have you had one or more retinography tests - if so do they show any deterioration?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

As to insisting on B12 jabs "every six to eight weeks as opposed to 3 monthly" that would largely depend on whether you still have neurological symptoms.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years been a widower for 26 years, on Lansoprazole for 20+ years, have had Type 2 diabetes since 2015 and am on Metformin so I can empathise with you on all points.

I wish you well.

[ITM69 in reply to clivealive]

Thanks for our helpful response, Clive ...

I will get on to the GP about folate and iron levels asap ... I do have a number of the symptoms listed ( ireddness, fatigue, muscle weakness in particular, but most worrying of all is the very sudden issues with blurred vision at distance and ghosting/double vision intermittently ).

[Baggy8 in reply to ITM69]

As the fast deteriation in eyesight is concerning you, would it be worth a visit to your optician to rule out cataracts or other issues?

[ITM69 in reply to Baggy8]

Hi Baggy, Yes I've had check ups with both the optician and I've had two diabetic annual eye screenings and both have been good.

I was even referred to the eye hospital last year and they ran all sorts of checks on me, but said my eye health looked great ( which is of course was great news at the time ). However, my eyesight has continued to get just a little worse, especially by evening time I struggle to see anything beyond 20 feet in front of me.

Obviously, only the very recent blood tests have revealed the B12 and heamoglobin deficiencies and I've been reading into the consequences of these to see if I can find some explanations as to what's taking place with me

[Gambit62 Administrator]

PPIs lower stomach acidity levels. This can inhibit absorption of B12 in the gut leading to a deficiency. However, you are now getting your B12 through injections which by pass the gut so continuing to take PPIs should not affect B12. As far as I am aware PPIs do not have any impact on how your body metabolises B12 once it is in your blood.

Whilst B12 can affect vision - so can diabetes. Are you being monitored for diabetic retinopathy?

'Fairly well controlled' implies that your blood sugar levels aren't perfect.

Not saying that B12 isn't involved but just that I'd also be more inclined to think it was related to diabetes. B12 deficiency is associated with glaucoma because of secondary effects on blood vessels such as those feeding the optic nerve. Whilst it is possible that the same mechanism could affect blood vessels in the eye itself the type of damage formed would be similar to that caused by the effects of diabetes on blood vessels, potentially leading to macular degeneration which would lead to symptoms such as those you mention. B12 can also affect muscle strength which could include the muscles that control the lenses in the eye - leading to loss of power of accommodation - but this is also something that tends to happen with age.

Has your GP referred you to an eye clinic in relation to the problems and what do they have to say?

[ITM69 in reply to Gambit62]

Yes, was at the main eye hospital locally recently. I went through advanced testing - all manner of imaging and latest machinery used to look at every aspect of the eye ... and I was told the eyes look very healthy for my age ( a very youthful 50 for the record ).

The point you make about loss of muscle strength strikes a chord with me .... I have been feeling very tired, weak and fatigued for the last few years in particular and my eyesight has definately started to suffer over the last 18 months ...

Two of my closest friends both diabetes type 2 also ( same age as me, as it happens ) and neither of them have any issues with their eyesight ...

[Gambit62 Administrator in reply to ITM69]

my mother has diabetes and has severe eye issues - virtually blind - as a result.

I have other friends who are in the same boat.

I also have friends - albeit in their 70s who don't have diabetes but do have problems with macular degeneration. Also know others who started to be affected much earlier.

However, if the examination didn't show any problems then it isn't macular degeneration which is one less thing to worry about.

Unfortunately 50 is also well into the point in time where the muscle strength in the eyes starts to deteriorate anyway so it may just be age related.

[ITM69 in reply to Gambit62]

Yes, I guess it's the luck of the draw regarding the age matter ... I am an active 50 year old and I went plant based about four months ago now, so I'm hoping to at least maintain the eyesight and not allow it to get any worse.

[zodiaknas in reply to ITM69]

Hi, could you please share how are your eyes now after couple of months treatment? I have similar issue although my optitian says eveything is fine.