This is my second post with some more info and the hope that you can advise on what my next steps should be as feel like going round in circles at moment
Here’s my lowdown:
Have borderline low vit B12 deficiency, 242 ng/l at August 2016 (210-900) and 192ng/l as at May 2018 (181-800). I have a meat and fish eating diet with lots of eggs so thought I might have absorption problem that could be linked to severe bout of H Pylori back in 2016 which I had triple therapy for 1 week.
Not had much joy with my GP regarding further testing for B12 so chose to pay for private testing in early July. This shows negative for intrinsic factor antibody and anti parietal cells.
Some of other of test results worth noting from this (before I started taking B12 sublingual):
- 0.10 for MMA
- serum folate = 6.81 (3.89-26.80) previously 10.6 at 1st May 2018
- 14 for homocysteine (3.7-13.9)
- MCH 32.9 (27-32)
- lymphocytes 3.5 (1.0-3.0)
- reticulocyte count = 37.0 (50-100)
- active B12 = 49 (25-108 ng / L)
Other result rom last 3 months that might provide further context:
TSH = 1.31 MIU/L in May 2018
(Only ever had a free T4 test taken in Feb 2016 which was 12.2 pmol/ L (12- 22.0) )
Main continuing symptoms, which prompted me to start visiting GP in first place, are:
- severe fatigue (self employed management consultant so restricts work can take on)
- numbness and ongoing tingling in hands and feet, sometime in head, face, arms and legs.
- serious brain fog
- aching joints and bones
- increasing cholesterol- 4.2 to 5.9 over 3 years
About to have bone profile blood test requested by GP following reduction in calcium blood result from 2.28 to 2.17 mmol/ L (from May to June). Tested negative for Coeliac and retest for H Pylori shows nothing detected.
Been talking sub lingual B12 2 x per day (1000 ug) since after PA blood tests and GP provided a one off dose of B12 injection 1 week ago to see ‘if that would make me feel better’. Sub linguals give me a slight temporary lift in energy but nothing is budging in terms of numbness, tingling and brain fog. I’m 99% sure I’m not going to convince her to give me loading doses as she states that my result was within normal range.
I’ve just ordered a full suite of Thyroid tests through medicheck to explore that avenue but in meantime I’m unsure what to do next as feel GP is slowly getting fed up with me.
Sorry for such a lengthy post - if it wasn’t for me visiting this forum and soaking up the knowledge that is shared I’m sure I would have crazy with all of this.
Many thanks in anticipation of your responses.
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Scully12
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The negative result for the Parietal Cell antibodies is a fairly strong indicator that you don’t have PA.
Your high active B12 and low MMA both suggest you do not have a B12 deficiency.
Your very slightly high hCys could indicate a folate deficiency. But those levels look fine. It could be too little B6 or too much alcohol. Or it may be nothing.
Hi JMN2017. Thanks for your reply. My vitamin D came back fractionally low so have been taking 1 x 1000ug as recommended by GP for last 7 weeks. Not sure how long it takes for vit D to get into system but will continue to take and hope that this helps with symptoms.
I'm pleased to hear you are taking some Vit D but may I suggest 1000ug isn't very much, especially when trying to significantly increase your levels.
When I was found to be deficient in Vit D, I was prescribed a high dose for a week, which had to be prepared at another hospital (That was how it was done). Once I had finished this course, the GP suggested I continued to take suppliment of 5,000ug daily.
In fact, on a retest a year later, my levels, although within range, were still at the lower end so I now take twice that dose during the winter months and 5,000ug during the summer. I've recently had Vit D checked and I am now well up in the range.
It's taken me several years to get a decent level, which has been due to doubling the dose over last winter I certainly feel better for it too.
Having read deniseinmilden's post (I hr before this post), may I point out your B12 level is, in fact, Active B12, of which the normal range is much lower than the Serum B12 so I suspect, with due respect, might have been overlooked when suggesting your levels were very low. Have another read of fbirder 's post of 13 hrs prior to this post. Also, there may be other reasons for your Homocystine to be high in range, as you're clearly not B12 deficient. Personally, I don't think you need to worry about having B12 injections.
deniseinmilden
Please don't take offence. It's easy to overlook Active vs Serum B12 results but the range is quite different.
I must add that I'm not a professional and this is only my opinion and understanding
Check out the original post above and look down the list. You will find this amongst the results - "- active B12 = 49 (25-108 ng / L)" which seems quite well within the range. Also, have another read of fbirder 's post above. The rationale given is sound.
To me it looks like your B12 and folate are easily low enough to be causing your problems and the elevated homosysteine shows that your body isn't using your B12 fully but fbirder is, like the medical professionals, fully trained so his interpretation of lab results is way beyond mine.
Gambit64's replies to other's lab results are excellent if she is not able to reply to yours specifically.
It's definitely a good idea to get the thyroid function checked and, as JMN2017 says it could be a vit D problem, maybe as well as.
I too am self employed and as a result am more interested in prognosis than definitive lab results (I have worked for a sampling company and have included blind trials in my batches of samples so know that it's not a perfect science) although they are an excellent starting point.
If high level sublinguals make a difference and withdrawing them gives a return of the problems this is also an indicator of the source of the problem for you. Everyone is different and reacts in different ways to different amounts of supplements.
There are posts by lots of excellent helpers, particularly Sleepybunny and Foggyme, especially about trying to get jabs from your GP.
If you go down the self injection route, please ensure that you do your first jab at a health care center where you could get medical help in the extremely unlikely chance that you got a reaction to it.
When you are self injecting it is important to make sure you have all the supporting supplements needed to make the B12 work properly - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and probably iron.
Clivealive's posts are full of good information too, especially on low folate, but it is vital that you get your B12 working first and get the maximum improvement in your symptoms with this first as folate supplementation can mask the symptoms of a B12 deficiency.
Any further questions, please come back to us and good luck with getting to the bottom of it and feeling better. As you know you are in the right place here and will find a solution.
Many thanks for your reply deniseinmilden. Will look at the self injecting route I think - luckily my partner is a RGN so hopefully rely on him to do injections as I am a wimp!
I will definitely re-read some of the posts of the people you mentioned above as there is so much great advice. I will start taking proper notes as relying on remembering with brain fog hasn’t been my greatest idea
Like I said before. Your Active B12 is not low. Why do people keep saying it is low? It is double the lower limit. That is no low. Especially not for the Active B12 test which everybody says is more accurate than the standard serum test.
That, combined with the low MMA really strongly points to something other than a B12 deficiency.
I am not medically trained but I think it is possible that there are a few people who have PA but test negative on both these tests. I doubt there are many doctors who would be willing to consider a PA diagnosis in a patient who had negative results in both tests though.
My theory is that people who have deficiencies in certain immunoglobulins, may be incapable of making the antibodies that both these tests look for.
In UK, two first line tests are recommended. Did you have both these tests?
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease. If you did not have Total IgA test I am not sure your GP can be confident you do not have Coeliac disease.
NICE guidelines Coeliac Disease (2015 version) UK document
I also read that H Pylori can cause long term damage to stomach/gut. I think it's possible to get rid of H Pylori but still have damage that may affect absorption of B12 in some way.
Have you ever seen a gastro-enterologist/had an endoscopy?
Parasites
Have you ever eaten raw or undercooked fish? Visited an area where internal parasites infections are common?
Fish tapeworm infection can lead to severe B12 deficiency. One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Results for eosinophils can be found on a Full Blood Count test (known as Complete Blood Count in USA).
There are other parasites that may affect B12 levels eg Giardia Lamblia
In UK, emphasis in UK b12 documents is on treating people who are symptomatic for B12 deficiency even if B12 levels are within normal range and whatever the cause.
You mention numbness, tingling and brain fog which would usually be considered as neurological. Do you have other neuro symptoms eg tinnitus, tremors, memory problems, balance issues, pins and needles etc...
My understanding (I'm not medically trained) of BSH Cobalamin and Folate Guidelines is in UK, patients who are symptomatic for B12 deficiency with neuro symptoms should be on B12 injections, whatever the cause of the B12 deficiency and whatever their B12 level.
Recommended UK B12 treatment for B12 deficiency without neuro symptoms
6 B12 loading jabs followed by a jab every 3 months
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
See BNF, BSH and NICE CKS links for more info on UK B12 treatment.
NICE CKS link recommends that a GP should seek advice from a haematologist for a patient with b12 deficiency who has neuro symptoms.
2) PAS library section has leaflet "An Update for Medical Professionals: Diagnosis and Treatment ". Some on forum have passed this to GPs. Only available to PAS members.
3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".
I had typical symptoms (including neurological) of b12 deficiency with most b12 results between 300 - 500 ng/L, within normal range. IFA test result negative. I raised possibility of B12 deficiency with every specialist I saw.
Other possibilities
Has your GP excluded possibility of other auto-immune conditions eg Lupus, Hughes Syndrome (Antiphospholipid Syndrome), RA, MS and others?
Thanks so much Sleepybunny for all the information and links - I will definitely be reviewing and printing off relevant parts and hopefully this will help me when I next see my GP.
My test for coeliac was tTG IgA - result was 0.5 kU/ l (0.0-14.9) I only occasionally eat bread based products as feel they aggravate my digestion but purposely ate bread every day for a week before having the test.
I’m not aware of any family history of PA/ anaemia although my mum did have terrible indigestion most of her adult life and she used to say that stomach problems were just a weakness on that side of the family. Unfortunately she died of pancreatic cancer when she was 51 (17 years ago) and my dad passed away 2 years ago so I have no way of finding out.
Eosinophils- just checked results that I have from last 2 years as was a big eater of sushi at one stage after visiting Japan:
- February 2016 - 0.07 (0.0-0.4)
- August 2016 - 0.1 10*9/L (no range provided)
- May 2018 - 0.2 10*9/L (no range provided)
Wonder if it’s worth exploring this with GP?
She mentioned that she may refer me to specialist if blood results didn’t show anything so maybe I need to ask to be referred for endoscopy.
Thank you to everyone for your replies, the time you have taken is so greatly appreciated and is what makes this forum such a wonderful resource. I will now do some more reading based on the suggestions made so I am informed for my next GP visit.
"My test for coeliac was tTG IgA - result was 0.5 kU/ l (0.0-14.9)..... purposely ate bread every day for a week before having the test."
So GP did not order the Total IgA test?
If you're in UK, it appears that your GP did not follow the recommendations in NICE guidelines Coeliac disease (link in my post above) which says both tTG IgA and Total IgA should be tested.
If you are IgA deficient then your body may not be able to make the antibodies tested for in tTG IgA test even if you have Coeliac disease. The Total IgA test shows which patients have an IgA deficiency and therefore need other tests for Coeliac disease eg
Immunoglobulin G (IgG) EMA
IgG deamidated gliadin peptide (DGP)
IgG tTG
Might be worth showing GP, UK NICE guidelines Coeliac disease.
What advice did GP give you on preparing for Coeliac tests?
Current recommendation in UK is to eat plenty of food containing gluten, each day for at least 6 weeks before tests.
I wonder if you were eating enough gluten each day for your body to produce plenty of gluten antibodies.
Coeliac UK have a telephone helpline and may have more info on preparation for tests.
Coeliac UK tel 0333 332 2033
Your eosinophil results are all within range. Might be worth asking GP if there are any parasites you should be tested for .
"so maybe I need to ask to be referred for endoscopy."
An endoscopy hopefully would pick up signs of gut damage from PA, H Pylori, Coeliac disease and other conditions. It is your right to ask to be referred but GP does not have to agree.
I preferred to put requests for referrals (and queries over treatment etc) into a polite, short letter addressed to GP. I included symptoms, relevant family history, extracts from relevant UK documents that supported my referral request.
See letter writing link in my post above.
"I have no way of finding out."
Do you have other close blood relatives you could talk to?
In the end, after exhausting every possibility of getting NHS B12 treatment, I chose to self treat as an absolute last resort. My symptoms have improved to the extent I can now have a life.
More B12 info in pinned posts on this forum.
Misconceptions about a B12 deficiency (English article from Dutch b12 website).
If you look at BSH flowchart link in my post above, on bottom right of flowchart, it suggests that B12 treatment should continue if good response to treatment even if second line tests eg MMA are negative or normal range.
Have you ever been tested for MTHFR gene mutations?
Hi Sleepybunny. Just realised that I hadn’t responded to your second post. I hadn’t realised that about coeliac testing so need to raise with GP.
I’ve never been tested for for MTHFR gene mutations. Will add to list of possible for investigation if I’m getting nowhere with results from thyroid tests. Am going to work through things systematically so hopefully through a process of elimination I will eventually understand what’s causing my symptoms. Your posts have been so helpful and greatly appreciated.
My understanding in UK, is that people with raised homocysteine are sometimes given MTHFR gene tests . An internet search for "MTHFR raised homocysteine" should find articles. There is a some unreliable info about MTHFR on internet so try to pick reliable websites.
You might struggle to persuade GP to consider these tests.
MTHFR gene mutation tests are available privately in UK.
Not only does the latest BMJ research document summary only below state there is NO reliable test, but the Dutch links on the r/h side of the forum confirm this. But the fact is you had already tested low serum B12 and have high homocysteine*, which means there is a greater risk of heart disease than high cholesterol. The document states symptoms are paramount and, together with the UKNEQAS, confirms that any neurological symptoms should be treated with injections without delay to avoid permanent damage :
b12deficiency.info/. Lots of information on neurological symptoms, as well as on writing to your GP.
As it's generally so misunderstood by GPs and specialists who are at least 17 years behind latest research, it's important to know that vitamin B12 is a primordial molecule we can't do without. It has to be treated urgently and adequately when any neurological symptoms appear before they worsen and become permanent.
There are also articles for professionals available for members of the PAS - information on r/h side of the forum.
* Homocysteine is one of the single most important vital health statistics". A Framingham study found that homocysteine over 11.4 units in the blood dramatically increased risk of heart disease.
Vitamin B12 lowers it !
Good luck in getting the correct treatment Scully 12
“You aren’t deficient in B12. Your Active B12 test is twice the lower limit. And this is the newer, more accurate, test. If you had a B12 deficiency then your MMA wouldn’t be so low. Yes, your homocysteine is a little high, but there are many possible causes for that apart from B12.”
In patients with a reduced serum vitamin B12 and normal holotranscobalamin and plasma methylmalonic acid no further action is required since a normal plasma methylmalonic acid and holotranscobalamin indicates an absence of a vitamin B12 deficient state.
Reference 1 mentions patients with normal values of MMA, homocysteine and serum B12 who had clinical symptoms of B12 deficiency and responded to treatment.
Have to say am a little confused about the confusion over your b12 results. Those ranges look to me like total serum b12 ranges. I have had both active and total serum tests and the active range looked like this:
Medichecks Active B12 range = 25.10 -165 pmol/L
As you can see the range is much lower. Even If we convert your ng/L range to pmol it would be nowhere near that low.
Basically can't see why some folks are saying this is an active b12 result way above range???
It looks to me like a total b12 test at the low end of the range. Unfortunately not low enough to compel your GP to provide treatment. But low enough to cause significant symptoms.
"serum cobalamin of <148 pmol/l (<200 ng/l) would have a sensitivity of diagnosing 97% of true cobalamin deficiency"
"An additional problem when comparing different assays and results from different laboratories, is the units for reporting of serum cobalamin levels. Some report in ng/l and some in pmol/l (1 pmol/l = 1·355 ng/l). "
"The expected values for HoloTC (active b12) in healthy individuals are 35–171 pmol/l."
Edit: just seen the other result. Active B12 49. I get it now!
So, same source as before:
"The expected values for HoloTC in healthy individuals are 35–171 pmol/l. Lower and upper reference intervals for plasma HoloTC range from 19–42 pmol/l and 134–157 pmol/l, respectively (Refsum et al, 2006; Brady et al, 2008; Sobczynska‐Malefora et al, 2014). A recent multicentre study suggested a cut‐off point of 32 pmol/l of HoloTC for screening for cobalamin deficiency"
So alot of variance in the cut off points. For low and high. But on that basis looks not too bad.
Perhaps the thyroid route will provide better answers for you.
I would suggest it may be worth getting your GP to look into your thyroid tests again. Your FT4 looks low, although your TSH would seem OK. Did you get a T3 result?
Hi JMN2017 - No T3 test done at that time. I’ve now arranged for full thyroid testing (the full works) through medichecks when I return home next week from working away. Decided in meantime to continue with a B12, folic acid & b6 sublingual alongside a basic multi vitamin and look to really focus on healthy eating until test results come back. Going to go for anti- flammatory diet. Will then decide what to do next. I think going to my GP in between the above results and the thyroid ones yet to be done will only confuse an already very foggy situation.
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I certainly feel better for it too.
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