I found this group via thyroid UK group. It was there that they helpfully made me aware of my low b12 results. Please see results from November attached.
I have lots of symptoms which I initially thought was thyroid issues but am now looking into B12 deficiency.
I have an appt on Friday with a chronic fatigue syndrome clinic/endo. I'm just wondering if I should dive straight in and ask for a trial of b12 injections?
After these results I added high strength b12, b complex, iron, vit d and k2, Magnesium. I haven't taken b12 or b complex this week in case I have more tests on Friday.
Any advice would be greatly appreciated 🙏 🙂 thank you
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RedOne1
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I started high strength b12 supplements which helped a lot. Made getting through the day more manageable but still not fully functioning and often crashing with overwhelming fatigue when I've managed to do a bit more than usual. Struggling to stay in work, using annual leave to do part time at the moment. I'm willing to try anything before they diagnose ME/CFS.
I'm not sure if I have an older b12 result, for some reason I can't access my full record on nhs app. Will try and find out.
Thank you. I know I will probs be disappointed after my appt, I'm used to feeling not listened to but you never know, this may be a good one! 🤞
I found a previous b12 result from May last year. It was 318ng/l (ref 211 - 911). So from May to November I've dropped from 318 to 215. Is that considered normal?
That would explain the significant drop in wellness! My TSH also went from 1.8 to 4.4. There's definitely something going on. Hopefully get some answers tomorrow.
Thyroid disease especially Hashimoto’s and P.A./B12D go hand in hand. Sorry, I cannot read your results. I think it maybe the pixels or I need to find my reading glasses.
Please read Sleepybunny’s very informative posts.
I actually believe ME, fibromyalgia and Functional Neurological Disorder are cop outs. Yes, there is something wrong, we do not quite know. Here are some antidepressants. Go for counselling to learn how to manage your fatigue and pain.
It is not very SMART. Sorry, I cannot get to pain clinic because the nerve pain in my legs is too intense and I cannot even get dressed. Let alone commute there and back.
The supplements you are taking are ‘working’ at cell level which is biochemistry.
On Friday, at your appointment ask them to explain the Citric Acid Cycle.
Take a snapshot of the image in the link and ask them about it.
If they say, Oh you got it from tinterweb. Yes, a bossy midwife (aka a rotweiller who wears lipstick) who specialises in this particular area. You may need to remind them that there are approximately 30 trillion cells in the Human Body. If all of them cannot obtain the appropriate ‘power’ a person is going to be more than ‘knackered’.
Thank you, I can now read them. I noted your medical history which I am very sorry to read.
I would strongly recommend that you consider joining the Pernicious Anaemia Society. To have literature to take with you on Friday. You can see that your results have been flagged in red by the laboratory (they have said no action).
Plus, your vitamin B12 is 215 ng/L with the cut-off in your area being 211 ng/L. So, just 4 ng/L.
Problem 1 is on NHS it measures active and inactive vitamin B12. So between 40 - 70 % could be inactive.
Problem 2 that cut-off value varies depending on where you live. So, in the Outer Hebrides it could be 220 ng/L but if you live in North Wales it could be 110 ng/L.
The latter is called the Postcode Lottery. It is the bureaucracy.
Your symptoms are individual to you. Find out your Family History. Go into that appointment prepared. Push for a trial of injections.
Many of us have resorted to private care. Many medics have not been trained in this area as nutrition was taken off the syllabus.
I freely admit my knowledge of thyroid disease is not very good.
Please would you share your private care experience and details of your doctor with me? I am desperate to help my husband who cannot get anywhere with surgery as he is a complex patient! I’m very afraid it has gone on so long , the damage may be permanent. We live 20 miles from Cardiff, if you could recommend anything I’d be really grateful, Thanks X
I will private message you by Saturday 6 p.m. I do hope he is a member of the Pernicious Anaemia Society. Plus, has access to his Medical Records, blood results, when investigations were undertaken, their results and knows dates of other diagnoses.
So, compiling all information because a private Clinician can build up your husband’s individual Clinical Picture.
Likewise, RedOne1, will have their own, Clinical Picture. As do, I.
Thank you so much for your response. The answer is yes to everything, this is why I’m so frustrated by the 3 doctors at the surgery! He has two files going back a number of years, one for blood tests, scans, test results and most recently an mri and another for records of all hospital appointments, operations, of which there have been quite a lot and even courses of physio. I think the problem also lays because 5 different hospitals and 2 different health authorities have been involved over the years…..
I am a huge supporter of joining charities to gain as much information as possible, and print out the helpful stuff you learn from other members, also from healthlocked.
Unfortunately if you fall within range in our surgery, nothing is done, private blood tests are dismissed. Symptoms and printouts ignored and by what I read on healthunlocked thyroid and Pas., it’s all too common. I had to take control of my own health privately , so I’m confidant in doing what is nescessary, but it is a battle with my husband to get him to realise B12 is a whole different ball game!!!
He has been taking ppi’s for 35 years also metformin for 10 years, supplemented b12 mainly sublingual 1 ml, left off for 4 months for surgery to test….symptomatic but in range…. No alarm bells going off !
also, if your b12 is that low and you eat meat. That's severely low. It takes 4 years to deplete the stores and end up that low.
I was that low and was bed ridden. Forgetful. All sorts of back pain. Poor coordination.
The only solution was to inject b12 daily. After 2 years I was out climbing mountains. I'll never be the same but I am doing great. There is hope!!
If left untreated the symptoms can become Permanent.
This, it's best to get started with injections so you can heal. Don't let anyone talk you into spacing injections.
As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. B12 won't cause a liver of kidney issue.
The healing process will be slow as in 2 years or more for me.
I highly suggest requesting frequent injections. If they won't give it to you, have them teach you how to self inject so you don't have to keep coming in for the subsequent injections.
Any time I tried to space out the injections my symptoms returned and I would have to start over again
Then don't tell them just keep doing their regiment and buy your own supplies so you can do frequent injections. It's what most of us do because b12 deficiency is so misunderstood.
This article explains all the misconceptions as well as facts.
ncbi.nlm.nih.gov/pmc/articl...
The pernicious anemia society has great info as well!
pernicious-anaemia-society.org
Ask any questions on this forum.
Many here have thyroid and iron deficiency as well. Also there are iron deficiency groups on healthunlocked that are good as well.
Cheers.
Be good to yourself. It takes a lot of patience and self love.
Thank you. That's a very interesting article. And yes, the back pain is real. I'm so glad you are able to feel well again. I really miss exercise so the thought of being able to climb mountains is inspiring!
I'm going to read through the websites and build my case for injections. Thank you 😊
You have b12 deficiency symptoms and you have had a positive response to b12 supplements. Case proven.
If you have another test it may well be higher as a result of the b12 supplements despite having come off them and the white coat might perversely declare you haven’t got b12 deficiency. Then you have a problem getting treatment which you really don't want or need.
I would make a list of your b12 symptoms- see B12d.org.
Note your b12 result - all but deficient and at the bottom of possible deficiency.
Note your response to supplements
Note your hypothyroidism - a common co morbidity of b12 deficiency.
Note any family history of b12 deficiency
Note the NICE guidelines
and ask for or a trial of b12 injections to see if your symptoms subside. I would decline a b12 serum test which cannot be done against your wishes.
If you are going to do a trial, I would ask for no less than the suggested two injections per week. After all, the purpose of trial treatment is to determine whether there is improvement with adequate treatment. There is no research into what level of treatment is adequate for people who have neurological symptoms related to B12 deficiency. B12 is not toxic at any level, contrary to the belief of many physicians. So the trial should consist of treatment most likely to be adequate, ie, at least two injections per week, and, preferably every other day.
Everyone needs to know the following. There are two types of tests, and by not ordering the correct tests, some may advance to pernicious anemia before deficiencies are detected. An extracellular test is what most doctors order. Wrong! This test simply picks up residual nutrients from food and supplements in the bloodstream. An intracellular test determines whether or not nutrients are delivered into the cell for transportation throughout your system. This is the test you want. The best options for low levels are B complex patches, or, injections. If you are deficient in B 12, you are deficient in the entire B complex.
I have frequently seen references to sublingual treatment for B12 deficiency, and, similarly, references to patches for B12 deficiency, but I have not been able to find evidence that either is effective. If you are aware of such evidence, can you kindly steer me in the correct direction? Thanks.
My experiance would not be positive. . . . . . I bought my cyano and all the hardware required and wifey bought everything she could to stop me SI. . . . . I tried it all and more . . . . . I dont remember everything but one bottle of spray with 1mg of cobalamin of some sort but what stands out is that it was around £15uk. . . . . Near every ampoule contains 1000ug or 1mg of cobalamin with some even 1500ug and they vary from 60c to 1euro and they are straight to the point. . . . . A bottle of spray is never going to keep up with that I think. . . . . The patches were ornaments I thought after two weeks of them. . . . . . You are welcome to try them but I think they are a gimmick that so many try first without much success. . . . Maybe help some but def not me. . . . . . .
The spray I use is 1200mcg Methylcobalamin and has 40 doses for £7.95 on Amazon I’m still assessing though how effective it is and question how much of the dose actually gets into my system.
Looks like that is where I am at. Using sublingual and oral for years and patches more recently, but struggling more after doing reasonably well. Now been offered injections so better try that.
I seen a bit a while back about a new generation of patches with micro needles. . . . . Did they happen or were we being led by the nose again???. . . . . I think I'd stick with the jabs now I am used to it. . . . . . . I know its an awful choice to have to be confronted with but believe me and I'd say many on here we'd never go back. . . . . . it is cheap, handy and clean . . . . . And I'd not buy oral's from the UK as they could be from anywhere. . . . . . . Anyhow aside from that. . . . . . Ambroxol/Pulminaira whatever you wish .. . . .. I am very convinced this is about the greatest thing I have discovered since my GP stuck a red needle to me. . . . And like B12 I had never heard of it prior. . . . . ..But it is not available as an inhalant so many places. . . . . . .The only stuff OTC in the UK and it seems cananda and the us is saline with various names but saline nevertheless. . . . . . Saline is good but nothing on ambroxol inhalat. . . . . Would you know how ye'd make a tincture or liquid version for inhaling from the pulmanaria/lungwort plant. . . . . . . It cant be rocket science. . . . . . And even the original name from ancient times says it all. . . . . It is no use in oral form to me. . . . .
and a quick search brought up Bristol Botanicals who have a tincture bristolbotanicals.co.uk/pr-... Not used them and no doubt there are other companies.
I only use really good, clean supplements to avoid fillers and am ok with what I'm using, just don't think it is enough if I have the option of injections (which I've never been given until now). SI not an option initially, maybe once I know I can tolerate injections at all! The patches do seem to have a slight needle or texture and can leave a mark which makes me think they do at least roughen the skin. Probably the other Bs in them making them of use though, not necessarily their % of B12.
I am okay here as I have good supply of ambroxol inhalat which is ready to roll but I see folks with similar chest problems to myself and many equally not getting sorted. . . . It has done well for me. . . . . . . I'd even put it well above ipramol steri neb which is no better that saline to me and I wonder how many people are the same . . . . . . Like the idea of being prescribed antidepressants and anxiety tablets when all is wrong is a vitamin defiency I feel that the medical profession just throw one thing after the other at us in hope that something works. . . . . . I have had near to every inhaler ever made and I still took infections. . . . . . I dont actuially think I have even told the doctors that one of them seemed to work . . . . . I dont think any of them worked bar maybe one . . . . The only one that might have done anything was Clenil/Beclazone. . . . Just maybe. . . . . . Pulmonary tell me they cant see a lot wrong?? and I am not alone. . . . . . Perhaps nasal drip which I'd not disagree with but had got to the point where I could not get rid if the infection for more that a few days .. . . . So was it/is it some more basic problem . . . . . . I dont know but I through my first box of 50 ambroxol and better than I been in a long time. . . . . Despite entering early spring and all the scratchy eye and runny nose that that brings with it. . . . . . It only lasts about 3 weeks usually that
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