Hello all, I’m new here and not sure if I need to pursue some concerns I have with my health so wondered if anyone could possible give me some advice/guidance.
I’ve always been tired, (it’s a family joke!), struggled with gut issues (mainly constipation), and in the last 5 or so years had terrible brain fog, and crippling fatigue at times- felt like I would suddenly hit the wall and need to sleep. I’ve had cold feet and legs too at times, (had Doppler study at time and was told all ok, I’ve another one due shortly as I pushed for it at GP due to concerns, even though he said pulses in my feet are good), and burning sensation in my feet, and more recently progressing up my legs, especially at night. Sometimes have numb feelings in my hands, especially on waking. Muscle aches and weakness has been noticeable too recently, as have occasional heart palpitations. Have been told likely menopausal, or mental health issues, or more recently fibromyalgia, which I guess it could be, but…
I have had blood results of B12 ranging from 275ng/L to 437ng/L (reference ranges do seem to differ??) from GP’s over the years (2008 to 2024)
Serum folate flagged as abnormal twice as 18.4ug/L and 24ug/L and one which appears to read ‘above>’ 20 ug/L, although the most recent reads as 11ng/ml (difference GP surgery so different units) (2022-2023)
And ferritin levels in 2022/23 of 149ugL, 180ug/L and 169ug/L reference range 13-150 , all via GP surgery.
In 2022 I decide to have private bloods at Blue Horizon…
Ferritin 168ug/L range 13-150
Vit B12 292 pmol/L range 145-569
Sadly Folate sample had failed so no result.
Their report suggested B12 was borderline insufficient, and more iron studied would be advised. I approached my GP and they completely disagreed and said there was no need for any further investigation, so I didn’t pursue it.
My question is, should I be concerned and push for more/difference tests? What other tests can I look at on my records that may help me. (I only have limited info to hand at the moment as changed surgeries due to moving but could request these). Because I’m so fuzzy in my thinking a lot of the time, I’m quite confused by all the results and difference ranges/units etc, and have little energy most days to even try to understand or fight my corner. Most doctors make me feel like I’m wasting their time. I am very conscious the NHS is on its knees
Thanks so much for reading, and any help will be gratefully received.
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BlueOkapi
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Thank you so much for replying. I’m feeling so low atm as this has been going on for years, and I keep being told it’s in my head, in the end you just kind of accept it and struggle on, but I feel even worse just lately.
I’m not on any meds at present, I’ve never taken folic acid but it seems my folate has been high for sometime. (In the medical records I do have, I saw a note from lab suggesting that I should be advised to stop taking folic acid supplements! This was never said to me so I had no idea until I read it recently, and I wasn’t taking any.
Would high folate results suggest a possible B12 issue do you know? Some stuff I’ve read seems to suggest so, but more often it mentions low folate?
I’ve looked at symptoms and many do resonate with me, but others not so much? I guess I’ll await the results of the Doppler study to see if I have any circulation issues and then take it from there? It’s such a battle to even be seen, or heard it seems.
The only evidence-based research I have found re: high serum folate in the absence of high dose supplementation is that SIBO can cause high serum folate. Indeed when I was experiencing gastritis I had high serum folate. Unfortunately I was never tested for SIBO although seems somewhat likely. You might want to look up or search for "Why does SIBO cause high serum folate?" FYI SIBO also "eats" B12. This could be the issue. Separately, and for Nackapan (if you are comfortable sharing of course) since treating your PA/B12 deficiency, has your B12 been consistently over 2000 via labs? My MD in the USA is concerned since mine is this high and has been post-B12 injections. I've read conflicting information around high serum B12 and most recently that elevated serum B12 points to hepatic issues. My liver enzymes are in the normal range. Thoughts or insights?
So very very true re: checking sources! Thank you so much for taking time to share your experience. Indeed one needs to simply get some life back after so many years lost. In the same boat.
If someone is not supplementing with B12, then a high value can be concerning. From the NIH: "Elevated levels of serum cobalamin may be a sign of a serious, even life-threatening, disease. Hematologic disorders like chronic myelogeneous leukemia, promyelocytic leukemia, polycythemia vera and also the hypereosinophilic syndrome can result in elevated levels of cobalamin. " But if you are supplementing with a significant dose, then with a very high probability, the high test result is because of your supplementation. That is why guidelines recommend that the B12 level should NOT be tested once the PA is being treated with supplemental B12. In testing your B12, your doctor is not following standard protocols.
Thank you so much for replying, I will look into SIBO for sure (had to look up what SIBO was! 😆) Maybe this is also why my B12 is fairly low much of the time then? Thanks again
SIBO (small intestine bacterial overgrowth) can rob their host of B12, and also the oil vitamins: A,D,E and K. Greedy and rude. So definitely in the "bad bacteria" category.
One of the other possible indicators for SIBO is high or raised MMA (methylmalonic acid) : this can be blood-tested. If MMA is high/raised, then the following should be done to find the cause:
1) Renal test : blood test.
2) B12 test: blood test.
3) SIBO test: fasting breath test series over 3-4 hours (take a book).
All of these are available on the NHS.
I had my first MMA test requested by my GP - difficult but not impossible to find a laboratory that will do this; she had to request three times before successful. She had already ruled out renal problems, and had already found that I was B12 deficient and was treating me for this - but found my symptoms to be worsening.
She diagnosed me with functional B12 deficiency on MMA result, confirmed by the laboratory.
I think that a haematologist then sent me for a SIBO test, as she had found my MMA to be consistently raised (on 4 more MMA tests) despite frequent B12 injections. She wanted to rule out SIBO as the cause.
Thank you so much for taking the time to reply. The information you have given here is very interesting. I’ve had problems in the past with iron deficiency (before I had my hysterectomy), and also twice I’ve had vit D deficiency, one time it was quite severe. I now take vit d regularly as I don’t seem able to retain it but never knew why! This may be the answer? I’ll add this to my (ever growing) list of investigations! Gosh this condition is soooo complex isn’t it! Anyhow, thanks so much again, and best wishes to you
No - my SIBO test was "inconclusive" (but not repeated) - told either indicative of possibly SIBO or IBS : GP ruled out SIBO by a trial of antibiotics. I had a negative reaction to them : constant headache and vertigo - which I hadn't experienced previously on the few times I'd needed antibiotics before. This could have been explained by the fact that some antibiotics can deplete B12. Anyway, nothing positive happened so GP ruled out SIBO, and as for IBS, said that was not what we were looking at. Already had dismissed that as possible cause.
Frequent B12 injections finally normalised my MMA - but it took three years and six tests. It must have been the B12 injections, since I was not having any other treatment - and by then had seen consultants who had ruled out any other possible conditions, such as Coeliac.
How frequently were/are you receiving or self injecting B12 over the course of 3 years? Asking because I am in a similar situation with elevated MMA and Homocysteine as well.
My GP restarted me, trying for EOD, requested 3 per week, got 2 per week as nurses too busy ..... but this was after diagnosing functional B12 deficiency, confirmed by testing lab, and getting treatment advice. Later, this was reduced to 1 per month as a maintenance dose. I still felt that I could get more of me back, so started self injecting firstly at EOD frequency, then a couple of years later, back to 2 per week.
I've never been able to reduce this frequency without a return of symptoms. It becomes evident if I forget to inject. Using too much mental/physical energy or illness can also cause an early return of symptoms. Yet some still take me by surprise - quite random, cyclical but without pattern. Mostly, I am able to control and manage well enough - but it has taken a while and I am aware that I have limits now. Neither my MMA or homocysteine were tested until after B12 injections were started- MMA was raised and remained so for years, homocysteine "normal" by then.
If the alternatives (SIBO, renal problems) are ruled out, MMA being raised would indicate functional B12 deficiency. B12 and MMA can collect in the bloodstream but, unable to make the link required to take B12 on to cells/tissues, MMA will stay where it is and B12 will too. My GP found functional B12 deficiency to be rare : she had had a previous case which she diagnosed 10 years previously- but that was all, in her experience. Luckily for me, she remembered what to test for.
Indeed you were fortunate to find a skilled professional. I too am finding the need for EOD injections. When I wait longer the first symptom to re-appear is neck weakness (spondy) and lightheadedness. I've likely been depleted for a long time, only started injections this year after both MMA and HCY were elevated, and was experiencing the same as you: the battle to have enough injections prescribed. As of right now I have a new doctor who said she will prescribe as much as I need within reason (EOD approved, will Rx more if needed). Thank you for sharing your experience. It is beyond comforting to have found this site.
I think I first found out about this site from my lovely line manager at work : he helped me join the Pernicious Anaemia Society and this forum just before I left on sick-leave. I didn't even have a computer at home at this time and would not have known how to get help. Luckily, the library is just up the road - so I could check in every day.
You can get advice, support, helpful links to research and information, but most importantly, there is kindness.
You, too, are on your knees. Re your test results, one size does not fit all. I resorted to seeing a haematologist privately because I didn't accept my GP's 'normal result' ferritin verdict. I'm glad I did. Sometimes we have to test our hypothesis about our symptoms and find a way forward by trial and error. I now believe that as we age 'normal' results go out the window.
Thank you for replying. Is it easy to see a haematologist privately? Can I ask what clinic you used? I’m was wondering about having more bloods done at Blue Horizon but maybe an actual face to face might be better? Thank so much again for taking the time to comment.
You'll have to tell/ask your GP to refer you to your local private hospital to see a haematologist. You can go online before and see who they are and provide a name to make it easier for the referral. I used my local Spire.
hi there, there is a very simple intrinsic factor test they can give you which looks at b12 in the gut and I believe it’s from that they can determine PA?
The tests for B12 unfortunately have a high false negative rate. That is, for lots of people, the test will come back saying there is no indication of PA when the person actually has PA. But it does not hurt to do these tests because positive results are a strong indicator that someone has PA.
Just a clarification that the test being referred to detects antibodies to intrinsic factor, it does not detect B12 sufficiency or deficiency. It is sometimes shortened to an IFAB test. A negative IFAB result does not rule out PA but a positive IFAB (detecting the presence of antibodies) is conclusive for diagnosing PA.
These sound like textbook Pernicious Anemia symptoms. If you supplement with B12 and had a lot of improvement, then that would be evidence it is the problem. Sometimes people have normal range B12 values but they still don't have enough in their body. An ideal experimental treatment to check if B12 is the problem is to try a few weeks of every other day B12 injections. The doctor may not think it will work, but maybe you can convince them on the basis that it would do no harm. Or self-inject (directions on this forum). A possible approach that may not be as effective would be to try taking daily sublingual doses of 1000mcg of B12.
Depending on how you fare with the GP, and where you are based, some of us here have seen a private consultant in Cambridge who specialises in iron and B12 deficiencies. Can message you with details if wished.
As others have said, you need repeat blood tests, to include B12, folate, vit D, iron panel as well as the other standard bloods for "tired all the time". If you're B12 comes back between 180 and 350 you need MMA and to start B12 treatment (as stated in NICE guidance, take a copy to show your GP).I had very similar symptoms to you, and unknown to me I'd had borderline B12 levels for several years (i.e. between 180 and 350). Finally detected when they dropped before 180 after I'd had surgery.
Thank you so much for your reply. My B12 has fluctuated from 275 to 437 over the last 16 years, and I was alway told it was ‘normal’ from the GPs!? Books I’m starting to read suggest it should be above 450/500, and more like 1000/1500, however this doesn’t seem to be understood by the medical profession generally. More bloods it is I think, and this will probably have to be private as don’t think my GP will help. Best wishes to you, I hope you are getting the treatment you need and are well now.
My symptoms were dismissed for years by my gp. I was always tired, frequently depressed had recurring mouth/tongue soreness, poor sleep to name a few things.
Your b12 levels are quite low although in range. The high folate levels though I think are a red flag as unmetabolised folate builds up in the blood if there’s insufficient b12. I forget the details of the cycle but you can easily check it out.
My initial test results were b12 254 (after supplements), folate 23 - upper range 18 and homocysteine 11.
Once I had begun injections - self injecting- my folate dropped to about 15.
My energy levels increased, depression disappeared and I could think clearly. To think that a doctor can dismiss all of that is awful. It’s the difference between living and merely existing. They just don't have a clue.
Sounds so familiar Morning Mist, and thank you for sharing your story and results- it gives me some kind of comfort that I’m (perhaps) not going completely mad! I have been made to feel (to many times) by GPs that I’m making it up, or it’s all in my head. Trouble is when your head is so fuzzy it’s tricky to get your head round stuff, never mind be assertive with your GP, it’s damn hard work 😞. However, this community is helping immensely so thank you, thank you so much ☺️
I really don’t know how the medical profession has come to such a pass. Maybe it’s work overload, or the effect of dealing with an increasingly aggressive and demanding public. Disagreeing with you is one thing, but dismissing something as all in your head is incredibly patronising and quite dangerous.
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