I am a 41 year old man who was diagnosed with CFS 10 years. Despite this I think I have done well. Got a good job, a beautiful wife and two fantastic children. I was feeling that I was getting incrementally better over the years except for abdominal pain, which has come and gone for a few months at a time over the last 4 years and remained undiagnosed. Then 2 months ago I started getting tingling in my feet. I thought nothing of it then I mowed the lawn and the next day experienced extreme pain in both my arms. I started shivering, feeling nauseas, loss of appitite, pain behind my eye, insomina, night sweats and tingling spreading to my hands.
The doctor said I had a virus and sent me in my way. 10 days I went back as I was no better, i had full bloods and my B12 came back as 178 ng/L (normal range 180-1000), my red blood count was low 4.22 when I believe 4.7 is the low range for a man, haemocrit was slightly below range at 3.96 normal range (4-5.4) and Eosinphil was 0.01 only 10% of the low range! My MCH was was 31.9 (normal range 27-32) and my MCV was 94 fl (normal range 80-100).
The GP said that she was not willing to treat me for low B12 and that I should come back in 3 months. She said I was not anaemic, so I asked her about my low red blood cell count and she admitted she did not know what that test was or what it meant, I kid you not. She told me that the problems I was experiencing were not down to B12 deficiency.
I managed to use my powers of persuasion to get 5 loading dose injections as a trial and I am now 4 days away from injection number one.
I started takeing 5000mg sublinguals while waiting for the injection appointments and am feeling worse than ever. I did too much last weekend (fixing a dripping tap) and now my muscle pain is worse than ever all over my body. I have also developed muscle twitches in these sore muscles which has left me feeling scared.
I would like any advice from yourselves. Is my GP right? Are my bloods indicative of B12 deficiency or am I barking up the wrong tree?
Thanks for reading.
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Quincy999
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You could have Pernicious Anaemia . CFS is often mistakenly diagnosed instead of B12 deficiency . Trouble is it’s difficult to get a diagnosis , because doctors have no good knowledge of it, and the test for it, called Intrinsic Factor Antibody test (I.F.A,) is so very unreliable if the test proves negative. If you do have PA , no amount of oral supplementation will help . Injections will . You must try to get your doctor to give you regular B12 injections after your loading doses . You do not need to be anaemic to have P.A. . You need to read about P.A. -our Chairman , Martyn Hooper, has written 3 books ( Amazon ) about PA . and an American author , Sally Patchalok has written “ Could it be B12?” . On this forum , members have really come up against the medical profession , who fail to treat our condition correctly , so much so, that many of us have to self -inject. I need to inject weekly . Let’s see how you get on , but it doesn’t sound pronmising that your GP confesses to no knowledge of the low red blood cell count test . ( at least she confessed -many doctors wouldn’t . !) Tummy Pain is often present with PA ,because the condition causes low/no stomach acid , which upsets the stomach flora , causing pain and nausea . This happened to me also . I have overcome this by various means .
Thanks for your reply. I had both an ultrasound and CT scan on my abdomen but found nothing other than a bowel Polyp, which they removed. I did some reading up of conditions that would not show up on the scans and came to the conclusion that the pain was due to either SIBO or an ulcer. The doctors said both were unlikely and said they would wait for further symptoms to present themselves. Once my B12 came out slightly low I thought that this was the breakthough in getting to the bottom of it, but to my dissapointed they are not interested.
I am praying that I improve after my injections and if I do I will consider self injecting if they will not give me anymore.
Hi Quincy999 it would be a good idea to have your Folate level tested.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom" of the range.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
25% of patients with B12 deficiency present without anaemia
B12 is used by several key processes so symptoms are wide ranging. Macrocytic anaemia is a symptom which explains some symptoms but does not explain others, particularly neurological and neuropsychiatric symptoms.
You could try to persuade your GP to read up a little bit more on B12 deficiency - eg look at the BCSH guidelines which they can access through the BNF and sign up to the area on the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of B12 deficiency.
Well done for doing all you have and for getting so far yourself.
I can only add to the excellent advice above is a ray of hope that with careful management and the right treatment you will get a lot better and should be able to lead a reasonably good life again.
As you have found, many health professionals are ignorant of the problems we face but now you have found this group you can access support and a huge depth of knowledge to help you find the right balance of vitamins and minerals to keep you running.
You might find the sublingual B12 are not doing a great deal in topping up or refilling your B12 stores. It was a year ago I started sublingual B12 and after a month my B12 serum was 178 but as it was over the lower limit of 150 I was sent on my way. After a further month it had risen to @ 452 but my tiredness and gut muscle and nerve symptoms were as bad. In April I bought injectable B12 and bit took nigh on the whole 100 injecting every other day to be feeling 85% of what I once felt like I now do not get tired my gut is pretty much cured my joint pain is negligible. I have now been injecting once a week, for a month, I would injecting today but will see if I can go two weeks. My problems started when I was in my late 20s I am now 62. So keep badgering the Doc's keep strong.
I started an oral B12 spray about 2 weeks before my test and when i was told I was being tested for B12 I was worried that it would skew the results. I don't believe i am seeing much benefit from the sublingual i take now. Can't wait for my first injection on monday.
I reckon I skewed my first result by sublinguals having taken them for a month before.i wonder what they were beforehand, when I couldn't even walk on four days out of seven. It's a year on just about and even now the doctor isn't interested even though all my other bloods are so much better than before. Like you my white cells were really low. If you fall outside of the average they really don't want to know.
It sounds like your doctor need to learn some more about B12 deficiency. Many people have significant problems with B12 levels inside the low end of the normal range. Checking an MMA before you start your injections could show if your cells are in need of more b12. She can also test for intrinsic factor antibodies and parietal cell antibodies. I wouldn’t worry about the low RBC or eosinophils, they aren’t very significant. I also had a lot of muscle twitching when I started treatment. Hang in there. Some people start to feel worse before they feel better, so just know that as you are evaluating your response to this trial.
I had 3 weeks of loading doses every other day back in July. I felt quite a lot worse whilst having them, tingling everywhere, bloated stomach and lots of indigestion, anxiety. However, as time went on things started to improve gradually. I had my first of the 2 monthly injections 2 weeks ago and I felt some old symptoms come back for the first week and a bit, but after that my goodness I feel like my old self again. I was starting to dispair this would never happen, worrying about the neurological symptoms still hanging round a bit (there is still a bit of tingling but it’s on and off and on it’s way out I think) I had been given the impression by the medical people I see that I should just feel better instantly, and this is far from the case for many people it seems. My stomach improved no end with this last injection. So hang in there, it may be a slow process. Also make sure like others have said, that you get your B12 at least 2 monthly. I think I probably need mine monthly as I could feel I needed it (felt tired and wobbly like I had before the loading doses) at around week 5. I also am taking iron which might be helping. My levels were just in the normal range so low.
Thanks for sharing your experiences. I am a bit worried about the injections not working, but with your experience and others i am prepared for it to be a slow process.
I have adjusted to the tingling and can live with it as long as it doesn't progress, but i would like to see the pain, weakness and energy levels improve. I haven't been 100% for a long time in that I have had headaches, shortness of breath and muscle fatigue since my 20's, but the last few months everything has got drastically worse.
If I will improve i will ask them for further injections and investigate further into the cause of the deficiency.
Definitely low on B12, but the 5 loading doses you won’t feel much difference. It’s the ones after those and you will need more than 1 in 3 months which is what the doctor will give as standard practice.
Don’t worry it won’t take years but you most likely will have to resort to SI (self injecting) at much closer intervals.
1 per week is quite good, which is what I did after loading for 12-16 weeks and I felt a big improvement.
Also Folate and Ferritin is very important whilst injecting as they work together with B12, so best to get that checked out with blood test.
Sounds like you might also be low on Vit D as that gives you a lot of aches and pains if low and also really affects your mood.
Sorry I can’t comment on the rest of your blood results as I don’t really know but whatever is on the low side is best to get them up as well.
You first need to sort out the B12, Folate and Ferritin and then take it from there.(Vit D also).
The rest you can later add a broad spectrum multivitamin and Vit B Complex which will start you on your way to feeling much better.
It will take a couple of months before you notice a reasonable amount of difference and by 3-4 months it should make a big difference.
Once you’ve sorted the above you can look into minerals if you need them but focus on the above for now, you can’t do everything at once so just take it easy as you go along.
I think you will most likely need to purchase B12 and start the SI after loading doses. The frequency depends on how bad your symptoms are but SI 1 per week is a good start for now and later you can adjust that. My B12 level was lower than yours and 1 per week was good gradual improvement.
Keep us posted and ask any questions you need for any help.
You’ll get a lot of good advice.
Ferritin, Folate and Vit D you need to get checked as soon as possible and take them if low which will aid the B12 injections to work properly , Take them as advised by doctor but B12 you don’t need to be advised as doctors don’t know enough about it.
Don’t worry you will slowly but surely start to feel better
Wishing you well for now.
Feel free to post anytime with any questions.
The injections are not costly at all, they are good and arrive within 2-3 days from a good German Pharmacy called Versandapo.de online, I purchased 10 x 10 ampules boxes working out at about 55p per 1ml ampule.
Thanks ryan, I've looked back over my blood test results and folate seems ok 10.8 ug/l ( range >4) however my ferritin and Vit D were not checked. I had my first injection yesterday and felt no better, i didn't expect to after what I have read.
The pains I have are weird, i have no real weakness in my arms and legs but when I do something strenous my muscles and joints ache and burn. It is like I have done a heavy weights session and they are not recovering properly. It's in all limbs as well.
I have come to the conclusion I will have to self inject, which doesn't bother me. I have made the order for 30 ampoules.
My doctor last told me that she would give me B12 as I need 24 injections in a year. 1 in 2 weeks, but she said it’s outside her practice and because she doesn’t know if they’re safe.
What she’s saying is she doesn’t have much knowledge about B12 and she has to do things within her practice as a gp.
It’s good you’ve taken matters in your own hands as it’s quite harmless.
Just an update. I've got my last loading dose tomorrow. Not feeling great to be honest. My muscle twitches have lessened 80% since my last post, which is good. My muscles and tendons are still aching though. Feeling tired and a little emotional. Will i ever be the same again? The thought of getting the christmas decorations down from the loft is scareing me. Work is tough, I'm just a manager in an aerospace company so i don't have to do much in terms of physical excertion, but I'm just getting by and wanting to be in bed at home. No painkiller helps.
I know it will take time and one positive is that I'm not noticing the tingling as much, but i am tired of constant pain.
Another update, as i hate it when people don't followup on forums, i have now been told I probably have Lyme Disease. Bloods have been taken and I have been put on 28 days of antibiotics. I found a mummified tick like creature wedged in the vertical nail bed of my big toe, ewww, and it got me thinking about my camping holiday in the New Forest in late August. Bloods will take a while to come back but it is a mad world where I can have 2 medical issues whos symptoms almost mimic each other. Feeling positive.
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