Pa from 2008

[mjm1929]

Hi my daughter put me onto this group I got pa in 2008 and all I have been given is b12 injections but feel so bad sleeping hurting and not going out I hate feeling like this

[Gambit62 Administrator]

intramuscular injections are the standard treatment for a B12 absorption problem - the general problem is the frequency - 3 months is not frequent enough for a lot of people.

Have you had bloods redone recently?

Do you notice any improvement when you have injections and then it goes ... and if so what period.

Have a look through the pinned posts - to right if you are using a browser and at the bottom if you are using a phone

[mjm1929]

Hi

No my doctors has not done any bloods for I don't know how long but I have felt like this for so long and now feeling a lot worse

Thank you

[Gambit62 Administrator in reply to mjm1929]

you could ask to have your B12 serum tested just before your next injection to see if it is low.

People vary a lot in how long they retain B12 in their blood and for some people it goes a lot faster than 3 months.

If the serum test comes back high that isn't significant and certainly doesn't mean that you don't need more frequent B12 - the serum test just shows what is happening in your blood and doesn't give any guide to what is happening at the cell level, so it just rules out the explanation that you are removing B12 quickly from your blood.

You could also ask for MMA or homocysteine to be run in conjunction with the B12 serum - or just before the subsequent top-up if the serum B12 didn't come back high. These tests look at waste products that build up if cells don't have enough B12 - so would be evidence of a functional B12 deficiency ... which would again, mean that you need B12 injections more frequently.

[mjm1929 in reply to Gambit62]

Hi sorry have not been in here for so long been so bad I have just posted blood results and wondering if anyone can help me understand them please asap

Thank you

[pvanderaa]

Welcome. Hopefully you will find the support you need here.

Are you taking folic acid supplements?

[mjm1929]

Yes I am 10 mg daily have been for 8 years but I was told that my red blood cells are flat

[Foggyme Administrator in reply to mjm1929]

Hi mjm1929. Wow, that's a massive dose of folate to take every day. And for eight years!

Just wondering, did your GP prescribe these?

The recommended daily allowance for folate is 400 - 600mcg (0.4mg - 0.6mg). The 10mg you take is equivalent to 10,000mcg. That's a massive dose on a daily basis.

When I was first diagnosed with B12 deficiency, I initially took too much folate, levels were way over the top of the scale, and I felt very ill indeed.

Having high levels of folate can give a hugh range of symptoms.

Check out this website for the full range of potential symptoms from having folate levels that are too high:

mayoclinic.org/drugs-supple...

It would be a very good idea to get your GP to check your folate levels. Having too much can be as bad as having too little.

I suspect that your folate levels may be way too high and therefore over supplementation could be responsible for the symptoms you have (and potentially others that you do not describe here).

But of course, there may be other reason too...

Would be interested to hear how often you have your B12 injections?

Also - have you had your ferritin and vitamin D levels tested recently? Having low levels in these can also result in the symptoms you describe.

When did you last have a RBC blood test?

Have you ever been tested for pernicious anaemia (anti-IF antibodies).

So...start with more blood tests from your GP (particularly folate). If you get the results and post them here, together with the reference ranges, we can help with interpretation (GP's often get this wrong, especially where B12 and PA are concerned). If,you have any recent results, post them and we can interpret those, as well.

Be a good idea to do as Gambit62 suggests and read the pinned posts. Will give you more information about B12 deficiency and pernicious anaemia and may give you clues about what is happening at the moment (since you know you better than we do 😀).

And I'm so sorry that you feel so very ill - there are many people here who will know exactly what that feels like. And many have gone on to feel much much better so please hang on in there and don't lose hope.

There are lots of knowledgeable folks here to help so please do post any more questions...and plenty of support available if you need it.

And follow up on the folate 😀

Take care.

[mjm1929 in reply to Foggyme]

I do also have pa and yes the GP put me on this dose also I have been give cal-d I take 2 in morning and 2 at night thank you

[Foggyme Administrator in reply to mjm1929]

Hi mjm1929. Hope he didn't put you on these eight years ago and then just leave you on them? S/he should be checking your blood levels regularly.

If not, I seriously suggest that you ask for blood levels for folate, calcium and vitamin d to be checked.

Good luck 👍

[mjm1929 in reply to Foggyme]

Thank you I have just looked at my tablets and will take photo of them and notice that the dose has just been changed to5mg but going by what you told me is still high as for vit D I am on 750mg/200iu tablets 4 tablets a day for the last well over 10 years name of them are

ADCAL-D3 I will be getting print out today of last bloods

Mjm

[Foggyme Administrator in reply to mjm1929]

Hi mjm1929. Sounds like very high doses of calcium and vitamin D, calcium in particular. Your GP may have a good reason for giving you these high doses but it might be useful for you to know:

10mcg of vitamin D a day is enough for most people (the doses you quote give you 20mcg) a day.

Calcium - over 1,500mg daily can cause problems. (The daily doses you quote give you 3,000mg a day).

High doses of calcium and vitamin D can raise calcium levels in the blood, leading to hypercalcaemia. It's possible that having high doses of both can therefore increase the risk of hypercalcaemia (too much calcium in the blood).

Symptoms of hypercalcaemia are as follows: loss of appetite, nausea and vomiting, constipation and abdominal pain, increased thirst, frequent urination, fatigue, weakness, muscle pain, confusion, disorientation, difficulty thinking, headaches and depression.

Does any of this sound like the symptoms you have?

So...worth considering if some of your symptoms could be due to over supplementation with calcium, vitamin D and (as before) folate.

Of course, your GP might have a good reason for prescribing these high doses. But even if your blood levels come back okay, it's worth having a discussion to see if the supplements could be responsible (or partly responsible) for you symptoms.

Oh, and....here's somewhere you can check vitamins and minerals:

nhs.uk/Conditions/vitamins-...

Good luck 😀

[mjm1929 in reply to Foggyme]

Hi can you please help me ASAP I have call my doctors today for print off of all my last blood results and they have told me that I have have to put in a written request for them also take my passport and proof of address and it will then take 3 days for them and why do I want them is this standard procedure or is it my doctors please can anyone get back to me ASAP thank you

[Foggyme Administrator in reply to mjm1929]

Hi mjm1929. If you are in the UK it is your absolute right to request and receive copies of your blood results.

You do not have to explain why you want them.

If you are registered with the surgery (which I assume you are) it is not usual to have to provide proof of identity and address.

Surgeries do not usually ask for confirmation of the request in writing - but some might.

Some surgeries may make a small charge - mine don't.

There's information about this somewhere on the NHS Choices website - sorry, don't have time to look for a link. Perhaps you could direct them to the do any place?

Think they're being unnecessarily awkward - perhaps they don't know what the guidelines are. But they should.

Don't give up 😀

[mjm1929 in reply to Foggyme]

Thank you very much

My daughter put me on to this group as she has problems with b12 and thyroid and understands it all but I don't know why I just can't take it all in all I was told in 2008 was I had pa and it had to be watched as it could turn into something nasty. Although I have never had regular tests to monitor this. As for my red blood cells being flat, someone said that could be due to the folic acid that Im taking but I was diagnosed with flat cells before o started taking folic acid. Sorry for all the comments I am taking notes of everything and appreciate all help X

[Foggyme Administrator in reply to mjm1929]

No problem mjm1929. B12 deficiency and PA are very complicated. And many GP's don't seem to know much about it 😖. Sadly.

PA can cause large red blood cells (macrocytic anaemia) and low ferritin can cause small blood cells (microcytic anaemia). If you have both, then they can cancel each other out and make the blood cells look a normal size, when they are not. The early changes were likely to be due to PA and the vitamin B12 deficiency it causes.

Ask as much as you need to...people here always willing to help.

A tip - when you have a new question, or want to put up results for help with interpretation, make a new post. That way more people will see it and be able to respond.

Take care and good luck with that awkward GP surgery.

[mjm1929 in reply to Foggyme]

Thank you so much

[Foggyme Administrator in reply to mjm1929]

👍👍

[Foggyme Administrator in reply to mjm1929]

P.s. Forgot to say...your GP has prescribed double the dose of ADCAL-D3 recommended by the manufacturers.

For information about is input 'ADCAL-D3 patient information leaflet' in the Google search bar and the relevant leaflet will oop up.

Again, might be a good reason, but it'd be good to know what that was/is.

👍👍👍

[mjm1929 in reply to Foggyme]

Thank you

[clivealive Forum Support]

Hi mjm1929 saddened to read how you are feeling. Unfortunately many doctors have this "one size fits all" attitude.

As you say you have been diagnosed with P.A. then refer your doctor to the third (highlighted) paragraph below:-

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment "

Unfortunately many doctors read down to the second paragraph and stop there.

You have P.A. You have neurological symptoms. You should be injected with (at least) 1 mg every 2 months.

I wish you well

[mjm1929]

Hi thank you for reply

I in the last 8 weeks have been forgetting the year thinking its 2015 what day it is and having to ask someone I don't want to go out and have stayed in for weeks and weeks I just can't get the energy to go I just get up so tired lay on sofa and sleep the day away every one keeps telling me I can stop my self from going asleep but I really can't and am so depressed

[Marz in reply to mjm1929]

I know how difficult it can be to make things happen when you are feeling so poorly. So make a small start by making a list of all the things mentioned above by other people. Try to read the Pinned Posts suggested to learn more - just a little at a time. If you are on a phone - scroll down until you come across them and have a good read when you are feeling strong enough.

It is better to focus on the things you can do rather than the things you cannot do. Just that simple mind switch can make a lot of difference to how you feel. Once you start taking action you will feel so much better.

So read through the posts again and answer people to fill in the gaps

Regarding the Cal-D - I am thinking it will be too small a dose to make a difference. Maybe better to take VitD on its own at a reasonable dose - say 2500 IU's. It is not expensive. It really depends on your VitD level when you were last tested as to how much you should be taking. VitD on it's own encourages better uptake of calcium from the diet so there is no need to take additional calcium. You should also take VitK2 - MK7 - with the VitD to ensure the improved calcium levels in the blood are directed into your bones and teeth. Calcium left in the arteries is not good. You may wish to add magnesium to the mix too.

Are you any other medications that could be affecting your health ?

I am not a Medic - just a Hashimotos girl with a B12 issue and after a lifetime of illness have made it to 70 in good health ( as far as I know )

[mjm1929]

Thank you yes am on lots of different tabs and this year had mild heart attack and been told that all leads from my heart go into spasms and tighten up so causing pain in heart and breathing using GTN spray also on MST morphine tabs 60mg twice daily also oramorph medicent