Why am I not getting better? - Pernicious Anaemi...

Pernicious Anaemia Society

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Why am I not getting better?

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I was diagnosed last summer with a B12 of 50. A message from the receptionist told me I had the ‘antibodies’ & would need B12 injections for life. After my loading injections I felt slightly better, but that did not last. My most worrying symptom is the weakness in my legs... I don’t feel I can lead a normal life. I have been self injecting for about 3 months every other day but my legs are very weak. Do you think this is permanent damage? (I don’t get on with my GP so don’t visit her) I take iron, vit d, folic acid, vit c & multivits.

21 Replies
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Be wary of taking too much iron. It can be nasty in large amounts.

Ask your GP for a referral to a neurologist.

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Hidden in reply to fbirder

Thanks, I only take 20mg per day....I guess I already know the answer to my own question, neurological damage

Healing takes time, like myself it would have taken a long time for levels to get so low and so healing will take a long time as well. I am 1 year in and still hoping for further recovery although it has slowed right down and hasn’t been at all linear.

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Hidden in reply to Showgem

Thanks Showgem, I have been feeling completely hopeless for the last few days (I have always suffered from mild depression) & unable to see a way forward, but I will now brush myself down & get on with my daily chores. Maybe things will improve.

It does take time.

I've been on injections for 4 months straight now.

I've had lot of improvements but setbacks too.

Definitely worth getting your iron checked so you don't take too much.

May also be worth trying some dietary changes. The Wahl's Protocol is good for neurological repair. It is quite restrictive but worth it if it helps.

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Thanks Leils, I only take 20mgs of iron per day, hardly enough to cause toxicity, also I don’t eat meat...my face is as white as a ghost so I don’t think I’m overdoing it. Thanks for the recommendation, I’ll check it out.

I didn't see noticeable improvement until I self injected every day. After about 2 months I was able to go back to every other day

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Hidden in reply to Hiska

I inject every other day, maybe I will give every day ago, thanks

Bobbidon,

Do you have a number for your vitamin d level?

The reason I am asking is that a lot of my symptoms went away during my b12 loading doses/self-injecting and some are coming and going/back and forth over time. But my legs were and are are a struggle. And I didn't see much change in strength/feeling/walking until I was told that I needed to take vitamin d in very high amounts for three months (just starting third month). My vitamin d was 7. 6/19. Supplementing with high levels of vitamin d impacted my legs almost instantly.

The reason for a three month time frame is that it is dangerous to supplement over time with a large amount of vitamin d. Levels must be retested.

And if you are taking low/normal amounts of vitamin d there might not be an impact.

I have yet to see the neurologist but I do have my scan. And I have lesions on the area of the brain that is responsible for gait and balance, so it hasn't been a surprise that my legs are a struggle.

Hope you see some improvements soon.

All the best to you.

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Hidden in reply to Litatamon

Hi, I‘ve only seen my GP once...we don’t get on & she talks down to me. After my initial blood tests I had a call from the receptionist to tell me my vit d was low. I was prescribed a very high dose which I took for 3 months. It made me feel very ill. I’m now on a maintenance dose which I have to take for life. I haven’t got any figures I’m afraid.

Litatamon
Litatamon in reply to Hidden

Okay. Can you tell me what the high dose was?

And out of curiosity can you tell me how the vitamin d made you feel ill? (helpful for me).

Thanks.

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Hidden in reply to Litatamon

20,000 iu alternate days... I think!

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Hidden in reply to Litatamon

Pains in my back, very dark urine & general malaise

Thanks Bobbidon. Appreciate it. I have felt completely "off" - dark cloud despite no issue beforehand - on the vitamin d but continue to take because it has had positive physical effects. I realize that is completely nonsensical since it is supposed to do the exact opposite with mood. Thanks for sharing.

Hope you feel better soon.

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Hidden in reply to Litatamon

Maybe we’ll all feel better when summer comes & we can get some natural vitamin d! 🌞

This doesn’t directly answer your question, but can you get a new GP - one you’d actually visit?

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Hidden in reply to Newmanka

Yes, I really need a new GP, one I can actually communicate with. I’m going to start making a few enquiries 👍

Cherylclaire
CherylclaireForum Support

You seem to be doing all the right things, but have had a very low serum B12 reading. It will take time.

I take it that what the receptionist was referring to was that your anti-Intrinsic Factor antibody test (IFab) was positive, which would mean that you have Pernicious Anaemia. The symptoms of B12 deficiency can be controlled, but the condition can't be cured which is why you need injections for life.

I felt nothing after the loading doses and then much, much worse when on the 3-monthly injections. My MMA was raised so I was put back on loading dose until I got worse again 6 months later. After a lot of tests and no real conclusions, I decided that every other day injections might help. It has taken over 2 years for me to feel able to reduce the frequency and now I'm doing okay on about 2 injections a week. A lot has improved, some symptoms have gone, and some remain.

This is a different experience for everyone- but difficult for almost everyone too.

These things have helped me:

- This forum for both support and advice

- My GP for acting quickly, taking professional advice, giving me printouts of all test results, making many referrals, for support, monitoring and respecting my decisions regarding self treatment

- Medical research , often through links here

- Martyn Hooper's book, which helped me finally understand the impact this was having on my life

- Knowing enough from reading the research and book to realise when consultants were wrong , many not being aware of what B12 deficiency can do (whatever the reason might be)

-Self injecting at a frequency that stopped me deteriorating

What I think might help you:

- A printout of your IFab test result ! This should guarantee your injections for life (despite frequency shortcomings) and may very well be useful for any breakthrough treatments in the future. Hold onto it.

- A GP that recognises how low your reading was, what PA is, and what to monitor for in order to help you get all the improvements possible. Ferritin, folate, vitamin D, thyroid - these are the most likely to suffer "blips". Other autoimmune conditions are possible (vitiligo, psoriasis etc). Difficult to control when you don't know where you are or where you're heading. fbirder is right - iron levels can be too high if supplementing without being monitored.

- Listing symptoms and recording daily- the frequency, the severity. You will over time see some of them fall by the wayside. Some disappear so slowly you forget you ever had them/ lost them - until someone discusses them here.

Too early to say if any of the damage is lasting. Possibly none - let's hope so.

You are making a lot of effort to improve and deserve better support.

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Hidden in reply to Cherylclaire

Hi Cherylclaire, thank you for your reply. I intend to find a more sympathetic GP although I’m not sure how. I almost have a phobia of seeing this GP as she has reduced me to tears a couple of times, silly I know but it’s become a problem for me,even though I’m a trained nurse myself (retired) & I avoid the surgery like the plague! I have a good relationship with all the nurses so will try to discuss issues when I have my next routine bloods. I’m self injecting every other day but still seem very weak, especially my legs. I don’t have many other symptoms, just depression, no numbness, just a few spots.

I think I’ll get Martyn Hooper’s book.

Thanks again

Cherylclaire
CherylclaireForum Support in reply to Hidden

I thoroughly recommend it. His own personal account hit home with me to such an extent that I recognised myself in his pages. It made me cry - partly with relief but partly from a kind of reluctant acceptance of all the signs I missed or ignored along the way.

No-one at primary care level, it seems, has time to explain to you what is happening to you and/or what to expect - or to ask any questions for instance about your family history and autoimmune problems, or about your diet..... perhaps there is no understanding of how difficult it is to live with this condition, or how difficult to control symptoms from day to day- and how limiting that is. The list of symptoms recognised by the NHS in general seems ridiculously brief. Anecdotal or not, by sheer weight of numbers, surely GPs must be aware by now that many more symptoms should be attributal to B12 deficiency.

When you go to your GP, you should feel that she will listen, believe what you say, and try her best for you. Even if she doesn't have immediate answers. Who does ?

I have had arguments with my GP, and she has on occasion been exasperated with me, but she has also told me that she wouldn't give up on me and she hasn't. I think that because we have been able to be honest with each other, we have both learnt a lot about B12 deficiency. Maybe not enough yet - but I think she has seen sufficient improvement in me to know that one injection every 3 months is not nearly enough to stop deterioration in some people....

Quite why that is, we may have to wait for Martyn Hooper and his research team to answer that one ! (See Pernicious Anaemia Society conference Dec. 2019)

Meanwhile, change your doctor. Your reluctance to see her says that loud and clear.

Don't expect to find a B12 deficiency expert, but do expect kindness-

Good luck and keep in touch.

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Thanks very much for your helpful advice. I have just this minute ordered Martyn Hooper’s book, & hopefully it will help me to come to terms with the situation.

I’m not sure I’m going to stay on the site as it seems to make me obsess about my condition, but I’ll probably be back when I’m feeling better

Thanks again

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