I was diagnosed low B12 10 years ago by a dermatologist checking my bloods. I had suddenly developed psoriasis in my armpits.
My GP at the time prescribed 50mcg Cyanocobalamin. I upped the dose to 200 MCG a day after a few years of not feeling any benefit.
I didn't eat a vegetarian diet and I now know this treatment for me was pretty useless.
8 years ago I developed painful calf muscles, walking up any incline is excruciating.
7 years ago I developed really painful feet, burning, swelling in the toes, painful nerve pain, the ball of my foot is swollen and tender. My feet were so painful I couldn't wear shoes for 2 years. I constantly feel like i'm standing in ice cold water. Low body temps in the 35's
Had explosive diarrhoea since 1998
Very dry skin
Hair loss
Hearing loss and deafness 2000.
Diagnosed Hypothyroid (Hashimotos) 2 years ago.
Interstitial cystitis diagnosed 2003
I have to take Cimetidine to reduce acidity to help my bladder pain, gabapentin also for pain. Because I have have low stomach i know this affects absorption.
My B12 has dropped by 100 to 402 in a year, folate halved to 7.5
Fainting the last 12 months, exhaustion palps breathless widespread joint and muscle pain. Brain fog, low mood.
I took Metformin for 2 years. I have had 11 surgeries, which i know can wipe out B12
Now my blood pressure has gone sky high and the doctor has given me a monitor to record pressure twice daily.
Similar in some aspects to my story; no real need for details here. However please think about the possibility of Coeliac disease; not as rare as some GP's would have us believe. This disease has up to 300 different symptoms so we're all different but as soon as I read that you have explosive diarrhoea ...... That was the symptom that sent me to doctors nearly two years ago.
In 2006/7 I was diagnosed with pernicious anaemia and hypothyroidism and convention treatment began. At that point diarrhoea and tummy aches were put down to IBS (at that point dr said no real treatment) probably along with extreme stress which 'would present similar symptoms'. So life carried on and put all aches etc down to 'getting old' and being less active as had given up a very stressful job. But the d........ slowly got worse, became explosive, had accidents. When in winter of 2012 I booked a double appointment with GP who I had not seen for 20 years. She was very thorough, listened very carefully ( commented on why I wanted a double appointment) and arranged for bloods to be taken. A week later she explained the result; very likely Coeliac Disease but an endoscopy was required to confirm blood test result. And indeed it did. So gave up gluten at once; began to feel better within 3 days and so many symptoms just disappeared over the next 12 months. I asked my GP recently how come I was so lucky in getting a diagnosis so quickly. Her reply ...... her daughter years ago had a friend who became Coeliac and there was an initiative (when I sought help) in my area that all diarrhoea/extreme tummy pains be tested for Coeliac. BTW go to the sister-site Gluten Free Guerrillas for support. Please let me know how you get on. Best wishes Maggie ((Bristol)
Are you taking any supplements now Helcaster? I was thinking you could try the ActiveB12 test but if you're supplementing you'll need to stop for a while.
Hampster
in reply to
Hi Hampser 1, i'm taking 5,000 MCG of Methylcobalamin sublingually for 2 months now, plus a B complex tab a day.
How long to clear this from my system? Yes I was thinking of the Active B12 test if I get no joy from my GP.
I did point out that my eldest daughter now had been diagnosed hypo and unfortunately has pernicious anaemia. It runs in family's?
Thank you for your help.
in reply to
St Thomas' say you have to be off supplements for 1 month but I'm a little uneasy about it, I think it takes much longer for them to clear your system, maybe it's different from one individual to another.
I think you could maybe push the family link with your GP first, and see if he'll run tests for anti-intrinsic factor and anti-parietal cells. You could bring in the NEQAS B12 alert with you, pointing out the unreliability of the serum B12 test:
Finally, the fact that you had low B12 before and were given those awful low dose cyano tablets is significant and in my mind medical negligence. They should have investigated the cause of your low B12 and given you injections not tablets. This is what the NICE guidelines say about the tablets:
"Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12. It is available on an NHS prescription only for a person who is a vegan, or who has a proven vitamin B12 deficiency of dietary origin."
I would suggest you also go onto the British National Formulary (BNF) website and print off section 9.1.2. You need to do a quick registration to read it, but it's worth it in my mind. It mentions those tablets as a no no, so another bit of ammo to question why you were given them in the first place:
I can see a reply from you in my inbox, but theres nothing here? Not sure if its me losing my mind or a system blip?
in reply to
Hi, I got halfway through a reply and pressed the reply by mistake with embarrassing typo's. Then i've been so tired I haven't made a second attempt!
I typed notes for the gp and mentioned my daughter was being treated for PA and I did also copy the B12 alert to her. I knew she would focus on the serum result and I wanted to be prepared!
I've done the check list and ticked lots of boxes. I will print that off and take it next Wednesday. Also touched on frustrations where doctors focus on blood test results rather than symptoms, grhhh!
Totally agree re the medical negligence. That same go could have started treating me 12 years ago for hypo too. I am composing a letter in my head to him.
Will look at and print off that BNF section too, although i'm likely to get angry I think. Also going to take the NICE guidlines Re treatment. My daughter was only offered once a month then the gp was going to stop them, unbelievable. Her serum was only in the 100's
Thanks for all the valuable info!
Hi Malago, The GP has made me a triple appointment next week and I will mention possible Coeliac, it has been a concern. If I eat anything with white flour I get very bloated, and have had diarrhoea after eating scones and biscuits. But I do seem to get a lot of diarrhoea around 4/5pm anyway when I might be eating these things. Not anymore! I eat gluten free porridge every morning, but do eat 2 slices of seeded wholegrain bread a day.
I had an endoscopy about 8 years ago that went horribly wrong. I didn't like the gastro and he didn't like me challenging him. He assumed the diarrhoea was caused by antibiotics for my bladder disease which infuriated me. Interstitial Cystitis is an inflammatory disease, no bacteria involved. He even wrote this on a slip to the lab. I phoned his secretary and said I refused to deliver this sample with misinformation on the slip, i'm going to cross it out. Well he got his own back, he didn't give me enough sedation and when the procedure was over I just walked up to the desk and said i'm going. He missed the fact that I have diverticular disease, in fact he argued about it. I had had an op a few years before for adhesions. My left ovary was stuck on my bowel, my gynae told me about the divercular disease. The morning after the endoscopy I had a massive bleed from my bowl and had to go into hospital as an emergency. When finally I saw the gastro again I laid into him, he was the most obnoxious arrogant consultant playing to his audience. I told him about the danger of making assumptions in medicine, and being clueless about interstitial cystitis. I had brought a hand book with me, and insisted he put it in my notes. As I was walked about the nurse at the back of the room smiled at me!
A few weeks later I had a barium x ray, I was told I had diverticular disease, plonker!
Does coeliac cause nerve pain though?
I've been chatting online with a woman with the same symptoms in her feet and the explosive diarrhoea and both ate improving on injections.
You mentioned nerve pain........... well I used to have so many joint aches; knees, spine,hips, elbows, shoulders, wrists and fingers. Now I think about it not too much in feet. But the point is that these slowly went away as my general health improved when I stopped eating gluten.
As part of my Coeliac diagnosis I had a dexi bone scan which showed I had oesteopania which is a 'pre osteoporosis ' condition. For this I take Fultium-D3 800 IU capsules. Now after 18 months aches gone and I feel soooo much younger.
My understanding is that I probably began to suffer from Coeliac between 20 - 30 years ago. If so then my body has been deprived of vitamins/minerals and other micronutrients at an increasing rate. Ingesting gluten is bad enough but over time, I believe, the result of incomplete absorption of nutrients in food causes many of the symptoms associated with Coeliac disease.
The diarrhoea is the result of the stomach contents not being absorbed by the villi in the small intestine because the villi have been destroyed as a result of the auto-immune aspect of Coeliac disease. Therefore avoiding all gluten (even the tiny amounts hiding in various processed foods) allows the villi to recover and they will be able to absorb everything properly as well as WATER which are the main functions of the small intestine.
This I believe is why there is such a myriad of symptoms and is the inevitable result of delayed consideration by doctors of the possibility of patients having coeliac disease.
Hope your triple appointment is beneficial, keep in touch. Maggie
Hi Maggie, I know I need to cut out gluten. I attempted this a year ago, but found the products not very satisfactory, and I got bunged up too. It was just so hard to get enough fibre. I eat gluten free porridge every morning. You really have to play detective as gluten seems to be hidden in so many foodstuffs. I've been thinking, ever since my thyroid antibodies shot up that I must cut this out of my diet. What depresses me about all this is my diet is already restricted with interstitial cystitis, anything acidic I can't eat, that includes most fruits except for pears
Now you've told me the benefits I know I have to do this. My body pain has been getting so much worse and now my hips have joined in making it hard to sleep.
Hiya just a quick reply as unbelievably busy and already behind schedule. I've always avoided processed foods; cost & flavour etc + I love cooking. So g/f has meant 'naturally gluten free ' foods/ingredients.
Not yet ventured towards gf oats; my breakfast is low fat yog+ stewed apple (try stewing pears) + pumpkin seeds and toasted coconut.
What I wanted to quickly say is short grain brown rice is super and very versatile and all pulses ( lentils chick peas butter beans ) perfect. Most bread is ghastly and not yet really baked own successfully yet ( have eaten very little bread forever as it always gave me tummy ache!!) GF pasta is very good indeed; just what is in the usual big supermarkets. For a treat go to a Carluccios restaurant and in their deli they have gf pasta for sale ..... even better.
For gravy I just add cornflour and make it a bit like custard.
For crackers Rude Health multigrain gf are better than rice cakes. I make easy macaroon type biscuits with ground almonds . Bye for now .... Maggie
I suffered that but mine was auto-immune from "HumanInsulin" , my explosive bowel caused by destruction of digestive part of my Pancreas , +hypo/Hashimotos ,PA , Adrenal damage .
I have to take Creon enzyme capsules to digest my food , levothyroxine doesnt work for me I have to buy Natural Decicated Thyroid , which is a trial ,the Royal Colleges are running a Cartel payed by Synthroid , so it is impossible
to get a prescription . Also recently told by Diabetic service that they cannot advise on my condition because I am having to use Animal Insulin .
NHS is run by Commercial Interest .
Hi Johnbarriesmith, i'm so sorry you're suffering so badly.
I did an Adrenal Stress Profile in May and the total cortisol was 15.3 which is low. I had a Synacthan Test in October and it was normal. What are we to believe??
Levothyroxine just didn't do anything for me either, it just got a bit of cholesterol reduced. I'm funding Armour and T3, we shouldn't have to do this. I can't say I feel any better on Armour but I can see I've lost swelling and my weight has come down a little.
Are you getting injections for PA?
I saw a new GP yesterday and my blood pressure is now so high I've had to come home with a monitor.
Like you i'm sure I would love just to get a little improvement.
I've gone through phases of seeing food unaltered in diarrhoea. I've reported so many things but they don't always get acted upon. My hypo was missed for 20 plus years now I have damage to my heart.
You mention Cimetidine which is an H2 receptor antagonist along with Ranitidine (Zantac), these drugs along with P.P.I's (Proton Pump Inhibitors) like Omeprazole work to lower acid and that is not good for B12. You also mention Cyanocobalamin which has a cyanide molecule added, which has to be removed by the detox systems. Cyanocobalamin also interacts with Cimetidine and a number of other drugs.
You mention Gabapentine, which is an anticonvulsant, which is or was used in the treatment of Epilepsy. The common side effects of which are Tiredness, drowsiness, incoordination, nausea, dizziness, along with Vomiting blurred vision, tremors and in some cases weight gain. There has however been a major study in India, regarding the use of Methylcobalamin and Gabapentine mixtures for the relief of nerve pain, with great success being reported in scientific detail.
You also mention surgery and the drug Metaformin, which as you probably know is a Hypoglycaemic and also has an interaction listed with Cimetidine, whilst among its detailed Precaustions, is listed annual checks for P.A.. There should also be lower dosages used in elderly and or debilitated patients.
Regarding Cynaocobalamin / Methylcobalamin, I recently took on board research regarding the differences in these two B12 forms and received this reply from an eminent Doctor in the field, which you and others on this site may find of interest :-
ANSWER:
Cyanocobalamin is the most commonly supplemented form of vitamin B12, but you might be surprised to discover that this form of vitamin B12 does not actually occur in plants or animal tissues. In other words, outside of the chemically synthesized cyanocobalamin that you encounter as B12 in most vitamin supplements, you would be extremely hard pressed to find this compound in nature (in fact you would not be able to find it). As the name implies, cyanocobalamin contains a cyanide molecule. Most people are familiar with cyanide as a poisonous substance. Although the amount of cyanide in a normal B12 supplement is small and from a toxicology point, viewed as insignificant, your body will still need to remove and eliminate this compound. This removal is accomplished through your detoxification systems with substances like glutathione being very important for the elimination of the cyanide.
Compared with cyanocobalamin, it appears that methylcobalamin is better absorbed and retained in higher amounts within your tissues. In simple terms, they are used much more effectively. In general, methylcobalamin is used primarily in your liver, brain and nervous system.
Methylcobalamin is the specific form of B12 needed for nervous system health. Because of this it should be the first form of this vitamin thought of when interested in attempting to optimize the health of the nervous system with vitamin supplementation. Indications of a potential deficiency of B12 in the nervous system might include numbness, tingling, loss of feeling sensation, burning sensations, muscle cramps, nerve pain and slowness of reflexes.
Because of methylcobalamin's importance in nervous system health, it is also an important nutrient for vision. In fact, continued visual work (like work on a computer) often leads to a reduction in something called "visual accommodation". Methylcobalamin can significantly improve visual accommodation, while cyanocobalamin appears to be ineffective.
An elevated level of homocysteine is a metabolic indication of decreased levels of the coenzyme forms of vitamin B12, especially methylcobalamin. Homocysteine has received a tremendous amount of emphasis in the scientific literature because of its associations with heart disease and a variety of other specific health conditions. I have even seen advertisements on television promoting folic acid, as a vitamin needed to lower homocysteine. While this is true, and folic acid does lower homocysteine levels, the combination of methylcobalamin and folic acid appears to work much better.
The most well studied use of methylcobalamin has to do with sleep. Although the exact mechanism of action is not yet clear, it is possible that methylcobalamin is needed for the synthesis of melatonin. Available information indicates that methylcobalamin can modulate melatonin secretion, enhance light-sensitivity, and normalize circadian rhythm (your 24-hour clock). Because of this, individuals supplementing this form of B12 often have improved quality of sleep, often will require slightly less sleep, and will not uncommonly report that they feel a bit more refreshed when waking in the morning. Methylcobalamin is particularly effective when your 24-hour clock is not running smoothly. This may be indicated by a need for excessive sleep, changing sleep-wake cycles, or a tendency to have altered sleep wake patterns. As examples, you might require 10-12 hours of sleep, or you might not feel tired until 2-3 am and you might wake at noon, or you might find that you wake a bit later every day and go to be a bit later every night. Under all of these circumstances the combination of methylcobalamin (about 3000 mcg daily) and exposure to bright light in the morning can help reestablish your 24-hour clock.
Because of methylcobalamin's impact on 24-hour clock and the cycles that feed of this, it is also an important vitamin to regulate your 24-hour release of the stress hormone cortisol. This seems to be particularly important for blood types A and AB. Methylcobalamin also seems to result in a better 24-hour maintenance of body temperature. Typically individuals supplementing this coenzyme form of B12 have higher temperatures in the later hours of the daytime. This usually corresponds with improved alertness at the same time of the day. While this can be of importance to all blood types, low body temperatures seems to be an area of greater challenge for A's and B's.
Good luck, I hope you also find the answer you seek and thereby soon feel a lot better.
Hi B12 Turbo, you've given me loads of info thank you.
I have realised more and more the damage cimetidine is doing, but unfortunately I don't have a choice. Cimetidine is a standard treatment for interstitial cystitis. Ranitidine doesn't alter liver enzymes, but still causes depletion of nutrients. I spoke to my urologist years ago re ranitidine and he said there's no evidence it works for interstitial cystitis. Cimetidine is causing havoc with my thyroid meds too. My pharmacist said I'd never do well.
I haven't had too many side effects from gabapentin, just the sedation which is very welcome at times. I was diagnosed as having low b12 before I took any medication, that is the worry. I read yesterday that cimetidine can affect up to 80% of the absorption of b12.
Re Cyanocobalamin my gp confirmed I should never have been prescribed it 10 years ago, I should have had injections. I've alerted my other daughters not to take this form of b12.
Yes my body clock is wonky! I can't sleep until 3 am, but i'm working on it. I have low cortisol until 4pm then it rises in the evening which is when I get my energy. I have already noticed that having taken methylcobalamin for 2 months now that i'm not waking so often, and i'm not getting up to the toilet as much. Before with my annoying bladder I could be up every hour.
I have A positive blood, and i'm freezing. My thyroid meds have been reduced, which is a bad idea for me and my temps have been as low as 35.8. My feet feel frezing cold and wet all of the time which is unpleasant. Some more body heat would be great!
Thanks again for taking the time to reply and be so helpful!
Having read Hampster 1 again, I would agree regarding the fall off curve of B12 levels. Now whilst I have little doubt that everyone is different, personally, I am ok regarding I.F. and P.C.A. and have undergone both HoloTC and MMA testing with Guys / St Thomas's Hospital and would not wish to ever question Dr Harrington and his team, Dominic has forgotten more than I'll ever know about B12 etc. BUT! from personal experience, I can simply state that I had 4 months completely off B12 and saw my Serum blood level drop by only 35%. So! I guess you can make of that what you will, but in my own case, the readings would seem to support Hampsters thinking on time scales.
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Doctor refused to give me B12 tablets but symptoms have returned
Doctor not convinced of B12 deficiency
GP has finally agreed to giving me B12 injections but no loading doses ☹️
