Newbie with some hope and a couple of questions!

[CharlieRN]

Hi, I've not posted on here before, but was pointed in this direction from the thyroid board.

I've been off work for 5 months with what was suggested (but not officially diagnosed) by several doctors as CFS. Blood tests revealed a vitamin D deficiency which I've had treated, but nothing else was mentioned at the time. I've since found out my B12 and Ferritin are very low (216 in range of 211-990 and 22 in range of 15-290), so I had been self supplementing those. I finally managed to see a GP in my surgery that specialises in CFS, and she had prescribed me 5 loading doses of B12 as she wants my results to be up nearer the 2,000 mark. I have to say, it's a relief for someone to finally listen to me and reassure me in not a hypercondriac!

I had the first dose yesterday and there are a couple of things that I was wondering if they are normal? One was that the injection really hurt - not the needle, but the substance first going in. The nurse warned me, but in all the reading I've done, I can't say that I've seen this mentioned anywhere?

The second thing is that since having it, I've been even more wiped out that usual - I fell asleep on the sofa yesterday afternoon, and slept for an extra 2 hours overnight. I was expecting to be the other way and bouncing all over the place! Can anyone advise at all? Many thanks.

[clivealive Forum Support]

Hi CharlieRN welcome to this community.

Firstly, did the nurse inject into the muscle or just under the skin?

I've been having B12 injections into the arm muscles every month for nearly 45 years and can count on the fingers of one hand when I can say it "hurt". (I had one this morning and it was fine). So maybe the nurse just caught a nerve and hopefully your next one will be OK.

Secondly it is not unknown for symptoms seemingly to get worse before they get better. Could you check with your doctor what your Folate level is as this is essential to process the B12 you are having injected and it is not a magic overnight cure so please don't get too stressed about things just yet.

My 40 year old stepdaughter has had ME/CFS since she was at High School and despite giving her the the books “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. and Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" to read and suggesting that she gets her B12 levels checked she has declined to do so.

I'll be interested to know how you get on and wish you well.

[CharlieRN in reply to clivealive]

Thank you Clive. I think it was into the muscle - it was just below my shoulder. The injection itself didn't hurt, although I felt it go into my arm, but I could feel the liquid go in and that was painful. It did pass really quickly though, but I'm left with a small bruise.

My folate level was ok when it was last taken with all my other tests back in mid May (7.8 in range 3-14.4), but I've included that with my B supplements since then, so I'm hoping yesterday's results will have pushed that up a little bit to help the B12 do its thing!

I'm sorry to hear about your step daughter. It must be difficult to have an ill relation who is unwilling to consider other options to help herself, when you have so much experience. But then we put so much faith in our GP's as we expect them to exactly know what is wrong, despite the fact that the human body is so very complex and that everyone is different. It's taken me 6 different GP's at the same surgery to get to one that is willing to help, and I know I'm one of the lucky ones!

[fbirder]

I can't say that I find my jabs pleasant, but I wouldn't say that they were painful. I have heard people say that it can hurt if the B12 is cold - straight from the fridge. I store mine at room temp, so I wouldn't know.

My first dozen or so jabs would leave me feeling washed out for about 30 hours afterwards. But they're OK now.

[CharlieRN in reply to fbirder]

Thank you fbirder. It might have been not long out of the fridge (it was on the desk when I walked into the room). The pain went quickly, although I've now got a small bruise. I'll see how the others go next week and ask about if they keep them in the fridge.

I'm really hoping that I won't need a dozen jabs! The doctor suspects I have some gut problems, so is testing me for that as well, and if that's the case then I'm hoping sublingual supplementation will be sufficient once I sort that out. But it's really useful to know I'm not the only one, so thank you for that 😊

[CharlieRN]

Thank you - glad I'm not the only one! I'm not expecting to feel better immediately, but equally I didn't expect to feel worse 😕 Hopefully things will change over the next few weeks, but I suppose the proof will be in the pudding (even if that's a gluten free one!).

[wedgewood]

You don't mention if you have been tested for PA . The Intrinsic Factor anti- body test . ( which , by the way isn't wonderfully accurate , , but it 's the best on offer . If you test positive you definitely have PA . If you test negative , you may still have PA!) If you do have PA , it would account for any gut issues you have . My gastroenterologist told me that PA patients have low or no stomach acid ( Hypochlorhydria or Achlorhydria respectively) The NHS has no test or treatment for that condition . There are tests , but not NHS ones . It means treating yourself really . Which I do . And I'm 100% better !

Pernicious Anaemia is often misdiagnosed as CFS. So maybe that's the answer !

I self -inject and have no pain at all . One gets to know after 2 years how ones own body likes to have the injection (I.M. into thigh for me )

You will recover I'm sure with enough B12 and plenty of folate . Best of luck to you!

[CharlieRN in reply to wedgewood]

Thank you, I haven't been tested for it, and it's not been mentioned by my GP (not really surprisingly!). Is the test for IF affected by supplementation?

[fbirder in reply to CharlieRN]

The anti-IF test shouldn't be affected by supplements, but it's probably best to leave a week between them

[CharlieRN in reply to fbirder]

Thank you - this might have to wait for a couple of weeks then, as I started my loading doses yesterday. I'm back at the GP once I've had all my injections so I'll ask her then 😊

[wedgewood in reply to CharlieRN]

Well when I went , in total desperation, to see a private GP , as I was getting nowhere with my NHS GP, I was a sight to behold, as I was literally covered in those B12 patches ,and my mouth was stained with the B12 lozenges . I was at my wits' end. In spite of having a sky high reading for B12 serum , I tested positive for the IF antibody test . Now I don't know if this applies to every sort of IF test that is done. I can only tell you what happened to me .

[CharlieRN in reply to wedgewood]

I'm sure you felt awful, but that image has brought a smile to my face 😊I'm glad you're feeling better now.

I'm not sure what the plan is with regards to further testing after we get the results from yesterday morning (she's also rechecking thyroid results after my previous TSH came back at 4). I'll get her to add this in just to check then.

[Lisahelen in reply to wedgewood]

Just the mental imagery has brightened my day, thanks wedgewood xx

[wedgewood]

Add to that picture my hair looking like a stook of straw, and me wild eyed with desperation !

[ellabellabee]

When I had my loading doses they hurt, they were straight out of the fridge and it felt like I was being punched in the arm. I also felt worse after the first 1 but started to pick up after the first week.

[CharlieRN in reply to ellabellabee]

That's great, thanks Ella - there's hope for me yet! 😃

[Gambit62 Administrator]

There is one nurse at my practice that I've seen the last two times and she really doesn't know how to give B12 because it stings like ....

Hydroxocobalamin is light sensitive and moderately heat sensitve- needs to be kept below 25C in a dark place so usually gets kept in a fridge by surgeries. Some nurses know to warm it a little in the hand before injecting but many obviously don't. There can also be a tendency to 'jab and get the patient out' as fast as possible which can make it quite painful as well ... but at least it is over quickly.

[CharlieRN in reply to Gambit62]

I'll definitely ask her to warm the next one 🙂 It is good that it goes quickly though - not so good attempting to hide the pain from my 4 year old who was with me 🙈

[Frodo in reply to Gambit62]

Bit confused as I mentioned B12 (hydroxo) being kept in the fridge to the nurse at my practice, and she said it is not kept in the fridge?

What happens to it if it isn't kept in the dark and at the right temperature - does it 'go off' and stop working?

Also, some people have said it's less painful if injected slowly, but a slow injection was the only time I found it painful - usually the nurse injects quickly and I barely feel it.

[fbirder in reply to Frodo]

One big advantage of hydroxocobalamin is that it is pretty stable. It doesn't need to be kept in the fridge (the Patient Information Leaflet states less than 25ºC) but it does need to be kept in the dark as it will degrade in the light.

[Gambit62 Administrator in reply to Frodo]

surgery's will differ but many do keep it in a fridge/cool box and don't warm it a little before injection.

[Sleepybunny]

"The doctor suspects I have some gut problems,"

Have you been tested for Coeliac disease?

coeliac.org.uk/coeliac-dise...

Causes of B12 deficiency

b12deficiency.info/what-are...

"I'm not sure what the plan is with regards to further testing"

Have you read this document "BCSH CObalamin and Folate Guidelines"?

Page 29 is a diagnosis flowchart that gives the recommended process In UK that medics should follow with someone they suspect has B12 deficiency. It includes when to order an IFA (Intrinsic Factor Antibody" test.

Link to PAS (Pernicious Anaemia Society) website.

pernicious-anaemia-society....

B12 books

"Could IT Be B12" by Sally Pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

I am not a medic just a person who has struggled to get a diagnosis.

[CharlieRN in reply to Sleepybunny]

I was tested on Thursday, so no results yet. She's also putting me on an elimination diet once I've had all my loading doses (assuming I don't get a positive result for coeliacs), to identify any other food allergens.

I'm not generally in any of the at risk groups for B12 deficiency that I know of (no autoimmune that has been found yet, not a vegan/vegetarian, none of the known drugs, no surgery unless a caesarean 6 years ago counts). But given my diet is rich in animal products, I believe something is going on behind the scenes, so to speak. I'll have a good read of those links thank you. It will be interesting to see how the next few weeks pan out!