Can you help me

[PaulFoster]

I am a musician, I have had type 2 diabetes for 6 years,I had a heart attack 20 months ago and had 1 weekend off work, then I put 2 discs out of place and had sciatic pain and just kept working then about 9 months ago I just got so exhausted I couldn't do my job properly so I found someone to replace me in the band and got a sick note from my doctor. so I have been off work for 7 months I recently had to go for the ESA assessment and they say I am fit to do some form of work on the assessment she did notice I had problems with my balance and told me to go and see my doctor, he did blood tests and found my B12 to be 93pg/ml. and gave me 5 injections over a 2 week period, I went to see the doctor today to see if I could get a sick note again as I still feel exhausted and ache, I was told I couldn't get a sick note as I had had the injections, I asked if that had improved my B12 and the doctor said they didn't know. I'm amazed. I am 63 years old loved my job and cant wait to return to it. My smptoms are muscle cramps, tiredness, weakness, back pain, loss of appetite, loss of strength,tinitus, loss of sexual ability drive desire, weight loss. I have been on Metformin for 6 years , I have recently stopped taking atorvastatin please help what can I do.

[wedgewood]

I am really sorry to hear how unwell you are . Your doctor should know that Metformin will deplete your vitamin B12 . You certainly have signs of vitamin B12 deficiency . Also, as we get older our stomach acid becomes depleted , and stomach acid is required to help in the absorption of vitamin B12,which is only obtained in meat , fish ,eggs and dairy products . Vitamin B12 works together with folic acid/ folate. It is called folate if it is in food (green leafy vegetables are best) and folic acid if taken as a supplement . Another name is vitamin B9 . It sounds as if you need more regular B12 injections . You have come to the Pernicius Anaemia forum . We have B12 deficiency because we have an auto-immune condition which produces antibodies that prevent us from absorbing B12 . I don't know if you have that . It's possible of course. . But because you have been taking Metformin , for quite some time- it could be the reason for your deficiency . As a PA patient I have found it impossible to get more than 1 injection every 3 months , so I have resorted to self - injection in Oder tokeep well . If you should need to go down this route , you could come back here and we would advise you what to do .

But first , try to get more B12 injections from your doctor . And take a folic acid supplement . Or better still , a vitaminB complex supplement . Pay great attention to a good diet ,and in these winter months , take a vitamin D supplement as well. ,

I'm sure that the answer for you is to get more vitamin B injections .

I do wish you all the best in this , but I know how difficult it is to get the right treatment( by the way an injection costs me £1.00 ! Yes it is that cheap ! That includes the ampoule, needles ,syringe and swab. I buy in bulk . The ampoules I get from a German online pharmacy , as they are only obtainable in UK on prescription . Everything else you can get in UK .)

I hope that this has helped you a bit at least. Best wishes to you .

[PaulFoster in reply to wedgewood]

Thankyou for your reply I was looking earlier on today as to how or where to get b12 injections needles etc from any guidance would be welcome mate.

[wedgewood in reply to PaulFoster]

I get my ampoules from a German pharmacy . It's one that many people use at PAS . A member last week wrote that it was the same make that is used at her surgery in the U.K. I.e. Obviously good and reliable . You need to google

"versandapo.de in English"

Yes do type in " in English" or it will appear in German .

Click on the link and it will appear- Magic !

Then in the search box type" Vitamin B12 depot"

I prefer the ampoules that come as 1mg/1ml . You can buy 1mg/2ml , but I prefer the smaller amount of saline . Less to inject , but same amount of B12 .

I use the Rotexmedica 1mg/1ml. You can buy 10 or multiples thereof , and 100 . The courier charge is the same no matter how many you order. It is called Hydroxocobalamin . This is the one you should get .

They are very busy at the moment. I tried to get on , but couldn't . Can get any other online German pharmacy , but not versandapo.de .

Then you need 1 ml syringes , swabs and needles . You need 2 sizes of needles . I for withdrawing the liquid . Size 21x1 1/2 " and the other for the injection. 25Gx1" This is really thin and goes in so easily you don't feel a thing! Then some cuti -soft swabs and a needle box for disposing of the needles called a sharps box . It's always yellow . You can get this from medisupplies and also from Amazon U.K. .

It's easiest injecting into the thigh , using the outer middle third of it . ( I've forgotten the name of the muscle that you are after ) Do watch videos on U tube . It's a bit nerve-racking the first time but it will become routine in no time .

Hope that this has helped

[pugdogs10]

It makes me so annoyed to hear this, you have had such a hard time and your doctor is giving you no support at all. wedgewood has already given you good advice but just wanted to wish you well.

[Gambit62 Administrator]

Assuming you are in the UK then the correct loading dose with neurological problems - and balance certainly puts you in that category is 3xweekly until symptoms stop improving (with a review at 3 weeks) followed by maintenance shots every 2 months - though even that may not be enough.

If you can get a full copy of your blood tests then they will probably show that you had macrocytic anaemia which will take a couple of months at least to improve.

At 93pg/mol your B12 levels were extremely low.

Suggest you

a) make a full list of B12 symptoms (though you may have to fight with GP because of the overlap with symptoms of diabetes - particularly on the neurological side).

b) Get yourself armed with materials on the correct treatment for B12 deficiency with neurological involvement - NICE guidelines and BCSH - think the may be links in the pinned posts

c) look back at recent posts on B12 and diabetes over the last week - some info in there that I posted on metformin and B12 levels that you could give to your GP.

d) consider joining the PAS society as a member - access to a lot of materials in the library and also other forms of support

pernicious-anaemia-society....

B12 affects a lot of systems in the body - production of red blood cells - release of energy in cells, maintenance of lining around nerve cells, recycling of neurotransmitters ... and with the levels you had the deficiency is obviously going to have affected a lot of them quite significantly. It can take a while for the effects of B12 injections to kick in and there are also some things that can happen that mean you actually need a lot more than the normal NHS rations.

If you really can't get anywhere with your GP then couple of options for obtaining injectable B12

a) - sourcing it from a pharmacy in an EU country that doesn't have it listed as prescription only - eg Germany - I use mycare.de - a lot of people use amazon.de.

b) contact B12d.org - though sometimes they can have problems with supplies. Please make a donation to cover the costs if you can.

and would recommend reading up and finding out as much about B12 deficiency as you can. Despite its prevalence and seriousness most GPs know nothing about it - many have distorted views of it that involve elements of myth (eg all caused by megaloblastic anaemia) - so hoping you have a GP that you can work with and learn about the condition together.

[Foggyme Administrator]

Hi PaulFoster...and welcome.

Grief....your B12 is very very low...not surprised you feel so terrible 😖.

Good advice from Wedgwood and gambit.

Thought I'd just pop by to give you some links that will take you direct to the main 'top-level' things you need to know about B12 deficency (it's not easy searching for things when you feel so rough, this way all you have to do is click a link). The information there will give you an idea of what your GP should be doing for you and also give you an insight into the complexities of this nasty little deficiency so that you can better manage your own health.

Your GP obviously has no idea about B12 deficency (to put it far too kindly). Just wondering...have you been put on a regular regime of injections (the intensive B12 regime for neurological symptoms - as per Gambits reply?).

Note - has he checked your folate, ferritin, and vitamin D levels. It's likely you have an absorption problem and deficencies in these can a) interfere with the absorption of B12 and b) make you feel very ill indeed. Good idea to get your GP to check these.

Has your GP tested you for pernicious anaemia (anti-IF antibodies)?

If you intend to self-inject and you do this frequently, please be aware that this can cause potassium to become very low - and this can be dangerous. But please don't be tempted to self-supplemt with potassium - high levels are just as bad as low levels and potassium is finely balanced. Best to try and ensue adequate potassium in diet (low salt on food, bananas...lots. Ore information on the internet).

I agree with Gambit62 , it would be a very good idea if you could get your GP on board with this. But you'll have to educate and persuade....beat to highlight the important I fora toon in the links below and then take along to discuss with your GP.

The value of doing this is that you'll be able to access the routine blood tests that you'll need to adequately monitor things like FBC, ferritin, potassium, folate, magnesium....etc. Also, if your symtpoms don't respond to treatment you'll need further investigations to see if you have any other underlying health conditions. In particular, the neurological symtptoms may necessitate referral to a neurologist if they don't settle down.

If you do intend to self-inject please read this information first. Because of your underlying health conditions there certain things you will need to be aware of first (they may or may not apply to you, but fore-warned is fore-armed):

mayoclinic.org/drugs-supple... (The Mayo Clinic. B12 - Side Effects and Warnings: Pre-Exisitng Health Conditions)

Anyway, PaulFoster, you've come to the right place for help and support...lots of lovely members to pop in and help with advice and support. You may have more questions when you've read the Information in the links below so please post again, likewise if you need more help with your GP and/or self-injection.

Good luck and take care...let us know how you get on 👍

LINKS TO GUIDANCE

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency/Neurological Symptoms: Can Be Present in Absence of Macrocytic Anaemia or PA)

👍

[PaulFoster]

Thank you so much. I saw the doctor today i wasnt happy with what she had to say so i have an appointment to see another dr on monday i will check all the links you have sent and go fully prepared if i still dont get satisfaction i will change doctors. My wife and i have special guardianship of 3 sibling children i am used to fighting the system for them its the first time ive had to fight for myself but already feel i have some good people in my corner since posting on your site i thank you all.

[Foggyme Administrator in reply to PaulFoster]

Just to let you know...in case you don't see it....just added an extra link in my reply above (in the main body of the reply) about the use of B12 and pre-existing health conditions....just in case you're tempted to start self-jabbing.

It might be a tough fight...doctors don't understand B12 deficency very well...sometimes if at all! Sadly.

Sounds like you're just the man for a fight 👹 😄

Again, lots of people here to help 👍

[PaulFoster in reply to PaulFoster]

I've downloaded all the above I will print them off and read them and take them along with me when I see the Doctor .Thankyou

[shaws]

You can supplement with B12 methylcobalamin tablets to keep your B12 up. I assume you've been given a booster dose and that's it. You haven't been diagnosed with pernicious anaemia I assume, so you got a loading dose.

Your heart and other problems could actually be due to the low B12 and I'll give you a link which might be shocking but truthful. Also the person was a paediatric doctor, he worked in a hospital and all of the doctors did not give one thought that it could be a B12 Deficiency.

I would ask your doctor to give you a blood test for your thyroid hormones as that, too, can cause problems but doctors seem incapable of putting two and two together as well as Vit D, iron, ferritin and folate as we can be deficient or low in all of them.

Always get a print-out of your results with the ranges and with regard to the blood test for your thyroid, it should be the very earliest possible and fasting (you can drink water).

healthunlocked.com/thyroidu...

[PaulFoster in reply to shaws]

Yes I had seen that shaws I came across it while trying to find out more about B12 deficiency its a real eye-opener cheers.

[shaws]

This is also a very important video re B12. The part is 4 minutes from the start:-

youtube.com/watch?feature=p...

[SarahFerguson]

I've actually started using the Boost vitamin spray and B12 vita science Patches all obtainable from Amazon. It may be of help! (Aswell as having B12 jabs every 8 wks from GP) Good Luck!

[Frodo]

Paul, I have just read about a medical study which found that in diabetic patients who had progressed to having kidney problems, taking large doses of B vitamins including B12 made their kidney problems worse, although their homocysteine levels improved.

I assume, but don't know for sure, that you should have your kidney function checked regularly due to the diabetes. I would ask the GP about this if I were you.

[Frodo in reply to Frodo]

Here's an easy to follow summing up: sciencedaily.com/releases/2... and here's a link to the original: jamanetwork.com/journals/ja...

I hope the links work. Don't worry too much though, you may well not have this condition - just something to be aware of.

[taka Administrator in reply to Frodo]

Wow those doses are very high doses for Folic acid (2.5mg/day) and B6 (25mg/day)!

The UK guidelines recommend

- Folic acid 0.2-0.4mg/day (200-400micrograms)

- B6 1.2-1.4mg/day

nhs.uk/Conditions/vitamins-...