B12 Deficiency or the Menopause?

Thank you Marie. It worries me that the NHS - which is under so much financial pressure - wastes money ordering the wrong investigations and wrong treatment for women with a simple deficiency.

On the strength of my description of my own symptoms (breathless, palpitations) I was sent for a chest x-ray (despite the breast cancer risk) and an ECG. I cancelled both.

I was then referred to a gastroenterologist (despite having no symptoms or history of stomach trouble) and told I could not have B12 jabs in the meantime (3 months) in case it "interfered with his diagnosis". Absolute rot!

I stood my ground, declined the offered HRT, got the B12 jabs, and when I saw the gastro man, he agreed with me and didn't think I warranted the procedure.

Clearly, there is nothing wrong with me - as the gastro man said "Some folk just don't absorb B12 well - that's all".

If I'd listened to my GP and not done my own research, I'd be on unnecessary HRT, and wondering why I STILL felt ill.

Wake up ladies, and do your own research! : )

Hi bluemaran,

Have the B12 shots improved how you feel now?

When I had low B12 earlier this year, spent a while on the Pernicious Anaemia Society forum, there are loads of people who get the jabs but don't feel much better, and have to fight to get B12 more often. some even have to resort to buying B12 and injecting themselves, it is scandalous that they can't get the simple vitamin they need.

When I had palpitations and breathlessness, I got checked out - ECG/xray - and when the results were clear I could stop worrying.

Am completely with you on thinking HRT a bad idea, not that it was ever offered as far as Ie can remember (I'm now 61). And definitely doing our own research - my doctor is still baffled as to why I am so fatigued, and has now referred me to a neurologist.

 

Yes, I did feel better, but it's a subtle change. Trouble is, while you are deficient, you can't metabolise the sugar in your blood for energy. So you feel exhausted, without really being breathless, and the energy gets diverted to flab. Dragging the flab around is hard work, and even harder to break down and shift at our age. It will be a long haul back - if I ever get there.

I have a pretty physical life, and I still can't shift it. Let me know what the neurologist says.

Hi Jeanp, If you got the jabs and they didn't work, you are amongst one of many who do not respond to cyanocobalamin (the standard injection in the UK). Interestingly the majority of people who don't respond to CN-Cbl also do not respond to hydroxycobalamin. The reason for this is because of a mutation in the methylsynthase reductase enzyme, which is present in 30-35% of the population. There is nothing you can do about the mutation, so what you need to do is to take the mix of adenosylcobalamin and methylcobalamin (the two forms of B12 that are naturally in an omnivores diet, and the two active forms in your body). 

Hi Madge. I saw the gastro on 2nd July, but only to discuss things, so STILL not scoped. I was apalled that he had not been given (and could not access) the results of my 3 previous bloods. I had two of them with me on paper and gave them to him. He took a further test and said he didn't think I needed a scope. He wrote to my GP the same day.

On the 29th my GP's practice left a message asking me to phone, but when I did, nobody knew what it was about, so I was given an appointment for today. I then called the consultant's receptionist who emailed me a copy of a letter he had sent them, and read his test results to me. Ferritin is low at 8, and the parietal cell and intrinsic factor tests aren't back yet, after a whole month. She faxed the results to my GP so she'd have them for today's appointment.

She had his letter (received 10 days ago) but not the test results. We discovered my iron prescription (2 x 210mg Ferrous fumerate/day for 28 days) had been doled out as 1 per day for 4 months (sigh). Since they don't suit me, I got a prescription for Ferrous sulphate instead, which I can buy over the counter for a third of the prescription charge.

Assuming the PA tests come back negative again, and bearing in mind I hadn't had a period for 12 months, I'd still like to know why I had such low B12, and why my ferritin is still at rock bottom. My weight continues to baloon, and I'm terribly bloated.

I feel like we are going in slow circles, not helped by poor communication at practice, departmental and region to region level.

I've resolved to doggedly take another month of iron supplements, then insist on a ferritin re-test. If it isn't back up and staying up then, I'll go back to the gastro. Meanwhile I think I might push for HRT to see if that will help my weight.

In the interim, reading about B12, I saw that Metformin depletes it. My partner has been on Metformin and the like for years, and displaying lots of B12 deficiency-type symptoms. So I insisted he got tested too. Surprise, surprise, on Tuesday we discovered his B12 is through the floor and his cholesterol (always well controlled before) has been climbing rapidly for months. The cause? The use of cheap forms of drugs. These have now been changed, and he's also on B12 jabs.

Should we really HAVE to self-diagnose like this?

Hi Bluemaran, So sorry to hear that you still have such problems. I guess the only good thing is that you have recognized the problem in your husband and through your insistence have been able to get him tested and treated. If only the doctors would make this possibility more well known to their patients. There are so many papers on it.

I have had a bit of a look around at your iron deficiency and the B12 deficiency. There seem to be quite a few studies linking the two, with a recent study by Sun etal 2014 (check Pubmed) you will find it. Now reading between the lines there are a couple of new thoughts on this. First, it is very common in people with inflammatory bowel disease, with about 85% having both the B12 deficiency and iron deficiency. Second, the majority of studies do not use the higher cut-off for B12 deficiency, which would be at least 300 pg/ml. There are a couple of possibilities. In the case of IBD, general uptake from the gut is compromised and so both your iron and B12 uptake is going to be poor. The second concept is that the B12 deficiency (particularly if combined with folate deficiency) will lead to a compromised gut and so you will end up with iron deficiency anyway. Thus in many patients with thyroid issues, they have low levels of iron.

One thing of concern is that if you look at the Sun 2014 paper, you will notice that these people has very high homocysteine levels. Now apart from the general problems with low B12, elevated homocysteine is a real worry. IT is associated with so many conditions, including cardiovascular disease. I can't remember, but did you get your homocyteine and MMA levels tested. These are very indicative of low B12 and would make your case harder to argue against.

Hi Madge,

I keep thinking it might be IBD, but clincally all I have is bloating and weight gain. I've gone from a steady 10 stone 3 years ago to nearly 13, despite the exercise. I can hardly reach my feet and my legs keep swelling up. I'm told I tested "absolutely normal" for thyroid.

The tests I have to hand cover FBC, HB, WBCs, Platlets, RBCs, Haematocrit, MCV, MCH, MCHC, DWCC, Neutrophil, Lympho and Monocytes, Eosino and Basophils.

I'll have to wait for the consultant's tests to appear at the GPs before I'll know what else was covered. I'll try to get them from him direct again. Do you know any affordable services that I could access privately to get blood tests?

I'm beginning to wonder about cholesterol levels and the risk of diabetes. At my age my mother nearly starved herself to death trying to lose weight. She was hypothyroid (surgical removal in her 30s), and they wouldn't help her with drugs. In the end she got gallstones, needed surgery, and a keyhole op (trendy at the time) cut off the blood supply to her pancreas. She died of gangrene.

Because I'm new to these GPs, they have no concept of the way I've deteriorated recently. To them I'm just a fat, old person. I've even tried showing them a photo of me taken 5 years ago for comparison, and explaining how I work 7 days a week, mostly outdoors, and never eat junk.

It's like they've written me - and every other woman over 50 - off. Ok, so it could be the menopause, but I'll be madder than hell if I take HRT then find it's something else. Anyway, my periods have just started again, so it's unlikely to be that.

Hey ho.

Not really. The quacks keep pointing to several years history of low ferritin levels (from 5 to 8, which I wasn't told about) and saying it was depleted by my periods.

But those stopped a year ago, since which, we've discovered and treated the B12 deficiency, but low ferritin continues. My periods just began again 3 weeks ago.

I'd been given Ferrous fumerate (without a doseage label) and I'm now trying Ferrous sulphate to see if it suits me better. Should I be taking Vit. C with it?

In view of my high iron diet and 12 months absence of periods, would you expect my ferritin levels to have recovered unaided in 12 months? I'm waiting to see if it was a fluke, or I get another next month.

I'm due a 3 monthly B12 jab in a couple of weeks time.

Hi Bluemaran, It certainly sounds like you have iron deficiency anemia probably from IBD. It is very common, and would explain your low ferritin levels. It often progresses to VB12 deficiency due to damage to the uptake system in the gut. I have placed a few links in the private email box. Also you should be taking intravenous iron plus sucrose not oral ferrous sulphate or ferrous fumerate. I would also consider changing your GI guy, because I am not confident your current doc is up on all of this. The iron deficiency anemia generally preceeds B12 deficiency by several months/years. In IBD the levels of uptake of most of your nutrients is compromised.

Hi Madge,

Thanks for the info. I'll pick up those links and see if there is anything that chimes.