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Pernicious Anaemia Society
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Still housebound

A month post loading doses of 6 injections.

Never felt exhaustion like it. In bed again . Vision down very very pale. Stagger walk returned. Some nasty symptoms subsided though thsnksxx goodness.

Waiting for gp to call as folate level on last bloods was missing.as were magnesium. Ferriton leveks 60. Hb 13. Must be missing something. Infkamarory markers uo. NeutrOxhill raised. ? White blood count raised. A doctor hasn't remarked. I got a cooyear collevoted for neurologist appt. Taking folic acid vit D vit c and b12!! Just incase I can absorb some!! Had liver with potato and peas and carrots . Eating loads actually but lost 10 lb over the weeks. Eating in bed so a mystery. Oh and body and head like lead trying to sleep last night buzzy again. Horrid feeling like you glued to the spot.

Any thoughts please

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I’m sorry I don’t have any suggestions over and above things already suggested. As I mentioned before, eating lots and losing weight in itself should be investigated. I don’t think this is a usual PA/B12d symptom (weight loss might be but that’s usually because gastric discomfort reduces appetite).

Sorry you’re feeling so rubbish and hope you find answers soon.

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Thanks .

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Nackapan. I think there's been a missed step in your treatment. Your GP gave loading doses and then the neurologist put you on the eight weekly maintenance regime for those with neurolgical symptoms.

The missed step: For those with neurolgical symptoms (like you) loading doses should have been followed by continuing B12 injections every other day until no further improvement...sometimes for many months. This step in treatment appears to have been missed: the fact that you need more B12 is evidenced by the return of your symptoms, in particular, the staggering (and perhaps,others that you haven't mentioned).

Information about the intensive regime of treatment for those with neurogical symptoms has been left in some of your previous replies...in particular, Sleepybunny left a link to the BNF (prescribing instructions which your GP can also access), which details this intensive treatment regime (about the third paragraph down).

Think it would be a good idea to re-visit this with you GP and ask for every other day injections (back this up by printing the information from the BNF to give to you GP since many are not aware of this because they rarely read as far as the third paragraph).

Sincerely hope that your GP does offer this treatment (outlined in all guidelines - BCSH, BMJ, NICE, BNF etc.) since under-treated B12 deficiency can result in potentially irreversible neurogical damage (also outlined in guidelines - left for you by Sleepybunny, I think). And most certainly, you need the right frequency/amount of B12 to regain your health and be as well as you can be.

👍

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Hi Foggyme,

I’m in the same situation where my Dr will not give me more than my original 5 loading injections (4 months ago) they my blood is fine will retest my blood at end of February. Still having all my original neurological symptoms.

I can’t find what I need on BNF?

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Hi Jessie.

Here's a link to the BNF (about the third paragraph down)...

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

This is the paragraph you're looking for:

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

[Note: whether you have pernicious anaemia is or not is a moot point. The treatment for pernicious anaemia is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency (from any cause) is the same. Also - macrocytic anaemia not always present in those with B12 deficiency and/or PA.].

More information information here (BCSH diagnostic and treatment guidelines):

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

Hope this helps...put up a new post if you need any further assistance 👍.

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Sorry to hear that. Haven't any neurological symptoms gone?

Some of mine went after a very rough 2 weeks of getting worse.

Exhaustion and vision bad now

Hope you get what you need soon.

Surly you must at least get 2-3 month maintenence shots??

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You would think they would, wouldn’t you? I don’t have the bad tiredness so much just the pins and needles and muscle spasm which keep my up at night. Dr is calling me Tuesday so hopefully I can convince her to give me more injections xx

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Went to see g.p today. As my antibody to intrinsic test came back negative and I got so ill on loading dose he would not give me a B12 injection today. I told him guidelines. The blood test for B12 and folate is done 3 Months after loading dose. I've booked b12 injection neurologist said in January. Bloods okay. I've not got anyour other forms of aneamia. Not megalostic thyroid okay ferritin leveks fine. I've started taking B12 tablets in the hope some absorption possible and eating liver ect. Taking folic acid and vit c and d . The multi vit I got online has iron in so not sure whether to take those. Before diagnosis I bought some multi vit (obviously low!) But the iron upset my stomach. My iron ok.

Thanks for reply .

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Hi Nackapan. Just to make you aware ('cause your GP might not be)...once injections have started all the guidelines state that there is no further necessity to test B12 levels (unless looking for low levels).

Many GP's test B12 levels following injections and then either stop injections or state that levels are too high (or 'normal') and take this to mean that more frequent Injections are not required - which of course is wrong, since B12 levels should always be high following injections (sometimes way over the top of the reference range). So, frequency of injections following the commencement of treatment should be based on symptoms, and not on serum B12 levels 😉.

So, if you are still having symtpoms (particularly neurogical ones) please don't let your GP base further treatment on serum B12 levels - come back if,you need more advice about that 😉😀.

Good that they're re-checking folate levels though 😀.

Hope you begin to feel better soon...frustrating I know, but it does take some time (and sufficient B12 😉) for the body to recover, especially if you've been deficient for some time 🤨.

Take care.

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Thank you

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Yes I went to go today. Fed up and back in bed. My other replies will explain

Thankd

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Really sorry to hear you are struggling so much. I’m not much better myself with neuro symptoms now after my first injection but I’m worried your bloods show so many elevated results. I think you should insist that your doctor investigates further especially with the weight loss you are describing. Did you actually feel better after your loading doses?

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No worse. As written above so frustrated. Such an effort to get there in a cab literally out of bed. Most of my neurological symptoms have subsided. Am left with exhaustion poor eye sight and seemingly when I do anything I pay. He didn't get the exhaustion. I compared it to 84 hours night duty over 7 days I used to do on Maternity. I wasn't that tired then! !! He said I must have a poor memory!!! Hate it when they go down the anxiety route. Yes I've some anxiety whoch is normal. He has no timeliness for expected /any recovery.

Hope your treatment helps you sooner. Take care

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Hi! Sorry to hear you still aren’t improving. Foggyme is right. The “loading doses” you received are not enough for neurological symptoms. Docs played this game with me and I finally found one willing to go along with 3x per week until no improvement. You DO NOT want to be left with irreversible damage. There is just no way of knowing. I truly believe it is in your best interet to take matters into your own hands. I had neurological issues and massive anxiety and panic attacks. Out of this world! I was using the wall for support, my vision was awful, couldn’t make out words on paper. I couldn’t drive and felt like I was going to pass out every time I stood up. I am pretty much back to my old self except if I don’t continue 3 jabs every week, I start to feel numbness in my hands and am in need of naps throughout the day. I know it’s scary but do what you have to for you!

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Yes. If you see my text above. I will muck up the next blood test in January. If anything gets worse I will seek help to self inject. Next B12 injection 11 Jan as couldn't get one today. I

Thank you for reply

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Hi nackapan

1)

Have you asked what type of b12 they gave you? Was it methylcobalamin or hydroxocobalamin?

If it's the methyl version and you have the MHTFR gene then you wouldn't absorb it properly and it would make you sick.

I hope I've got that the right way round as it's been a while since I was on this forum but plenty of posts on this before.

2)

Also if your folate levels were indeed low /normal then you wouldn't have had enough folate at the time to properly absorb the b12. In effect it would be wasted. If you have a problem with methylation as I mentioned above (MHTFR) then folic acid will also cause you more harm than good as it's a synthetic precursor to folate. You are best supplementing with methylfolate which is the active version. 400ug is a daily dose but sometimes we need higher. Even starting with that would be enough.

3)

I disagree that your ferritin is 'fine'. 50 is not deficient but 70 plus is usually required to feel better. (Range is usually 13-120!)

I finally got mine up to 90 and can attest it made a significant difference. I used spatone liquid iron sachets twice a day over a couple of months. However you may need ferrous fumarate tablets. Spatone is much gentler on the stomach and apparently has a higher absorption rate which counteracts the low elemental iron absorption of other tablets.

4)

Also you said your thyroid results were 'okay' do you have the actual results with ranges printed out?

Never ever take 'normal or okay' from a doctor. 'Within range' does not mean optimal levels and they will usually misinterpret results and even ignore slightly out of range results as not glaringly serious.

Always get copies of results.

The fact you are having so many symptoms a month later and losing weight whilst eating and bed bound as well as heart issues and so on - it does sound like it could be thyroid related? Possibly hyperthyroid.

Please look at symptoms and results - you can post on the thyroid UK forum on here for more feedback if you wish.

Thyroid and b12/PA issues are very commonly found together

5)

If you don't have PA you may have an issue with nutrient absorption and so may be deficient in lots of things.

Are you supplementing with vit D and magensium? if you've been housebound for a while youre almost certainly vit D deficient.

Magensium blood tests are notoriously unreliable and unspecific - you can't really overdose on it and it's as important as vit D.

Multivitamins aren't great. Wrong doses, cheap synthetic version of vitamins and because they often contain iron and calcium which stop absorption of other things! Iron should be taken 2 hours away from other supplements but take vit C with iron for best absorption.

You don't need to supplement calcium normally but avoid calcium containing foods 4 hours away from supplements.

Hope this helps to identify a few other things you may need to consider.

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Very helpful. Thank you. I have prints of results. I will look again when less weary. Driving me mad trying to understand everything. I went through with G.put today but as you say they dismiss so much. Actually forgot to ask why some things ellovated like white blood cells. He convinced me all was well on bloods. I wanted b12 tested again 3 Months after first diagnosis before next injection as a guide as well as folate. Methyl folate I will remember. ThsnkdI donthink seem to need iron as not anaemic. Spatone is good I've heard though

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I was the same with elevated white cell count and they ignored it. Or put it down to a previous infection or something else I can’t remember

Recent tests seemed to be better once iron restored so not sure if connected. I am also recently on steroids so that probably had more to do with it.

You can post a picture of your results on here or thyroid uk forum (omitting any personal details) and members can interpret and advise for you if you wish .

Good luck

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I note you mention you had an elevated white blood count...so do i....did you ever find out why? thanks so much. J

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Unfortunately not. I believe it was from previous infection or general inflammation.

Once I had all my vitamins Nd levels sorted my CRP inflammation markers went down and I believe the white blood count too

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Thsnks

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Thanks

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Saya85

I think you are somewhat confused about MHTFR and its links to B12.

The MHTFR gene encodes an enzyme - MHTFR. This enzyme reduces 5,10-methylenetetrahydrofolate to (5,10-MTHF) produce to 5-methyltetrahydrofolate (5-MTHF) as part of the folate cycle.

The methyl part of 5-MTHR is then transferred to cobalamin (B12) by a different enzyme to form methylcobalamin which is used as a source of a methyl group to add to homocysteine to produce methionine. This is why folks with either a folate or B12 deficiency have high homocysteine levels - if either folate or B12 are missing this step can't happen directly and homocysteine levels rise. This is why we need to make sure we have enough B12 and folate.

The MHTFR enzyme has nothing whatsoever to do with B12 absorption! Folate and B12 absorbtion methods are completely different and once absorbed they have no effect on each other other than the reaction I mentioned above as far as I know. B12 absorption is via Intrinsic factor in conjunction with several other

proteins in the illium, folate in the jejunal mucosa. ncbi.nlm.nih.gov/pmc/articl...

Everyone has MHTFR genes. There are several very common mutations - most of which don't seem to do much. One ( C677T ) makes the enzyme slightly less stable and not quite as effective (especially if you have 2 copies of it) but the body compensates for most of this by making more. The jury is out on whether folic acid or methylfolate is better for those who have 2 copies of the C677T mutation - folic acid is much more easily absorbed and is much cheaper than methylfolate but some seem to prefer methylfolate.

It is possible to take too much folate (either folic acid or methylfolate) which can have side effects so best not to take very high doses unless prescribed by your doctor. Many of us take 400mcg as this is a very commonly available dose and along with what we get from food should be plenty unless your GP says otherwise. I'm not a medic but I decided to take 400mcg folic acid when I remember.

Nackapan Your ferritin is not at the bottom of the range but not particularly high either. This is an iron storage protein which can help give an idea of iron levels indirectly but as it can be raised by things like inflammation in the body it has to be taken in context with any other medical issues you have by your doctor. Have you had your iron levels measured (Serum iron, TIBC, Transferrin etc)? This may give you more insight. Iron is a best prescribed by a doctor if needed as too much in the body can be pretty harmful.

Oh and be careful if you decide to take magnesium - one of the major side effects is diarrhea for many people.

Raised white blood cells is often due to an infection / virus / cold etc. Neutrophils are a type of white blood cell which can be raised in some bacterial infections but also if there is inflammation (for example in arthritis or other things) going on somewhere in the body which may tie in with your raised inflammatory markers (CRP?) Maybe ask your doctor about these results - (s)he may wish to retest your blood to check if these have returned to normal.

Good luck!

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Thanks for the detailed reply! I knew I was getting confused on it as it's been so long since I started my journey here- haven't had to look back !

Was hoping to point OP to consider /look into it a bit more whatever the issue may also be.

However I am surprised at the folic acid Vs methylfolate advice as I'm sure that's what crept up recurringly here and through my research previously.

And I can't remember why there was a debate on which version of b12 to use in earlier threads.

Maybe advice has changed or as is most things related to health)/supplements it's not always as straightforward as we make it to be.

I'll admit I'll probably have to read this again to fully absorb it as it's 5am and I don't think it's sunk in properly !

Thanks again.

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Yes Thanks. I only take folic acid 400 vit c vit D and b12 . Was considering a multi vit instead some days.

My brain MRI showed inflammation. Maybe that. ? Neurologist has seen scan and not concerned. Or it may have been awful migrain/headaches post B12 injections? Gp was so adamant bloods ok I forgot to ask about the ones above reference range. I will get them included on next blood test

Thanks

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Thanks

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