hi all , i normally hang around on thyroiduk forum as i have autoimmune hypo.
My daughter has asked if you guys would cast an eye over these results , as you know much more than me about b12 issues .
She's 26 , has just been prescribed eod b12 injections due to the following bloods/ symptoms . (no apparent thyroid issue's , we originally wondered if she was going hyperthyroid as symptoms fitted but TSH/ fT4 / fT3 all ok /checked twice, and TPOab negative)
just for info ~ she was recently prescribed propranolol due to palpitations / anxiety/ insomnia/ retching first thing in morning ...propranolol helped with those symptoms quickly , but further tests revealed low b12 and i've just noticed the folate / ferritin are also extremely low ;
B12 145ng/l ~ normal range >203ng/l
Folate 4.4 ug/l ~ normal range >4 ug/l
Ferritin 13 ~normal range 11-307
she's not veggie / vegan , the quality of her diet is generally ok/ good , but her appetite for last year last year has been increasingly poor, and she's lost weight , and as she's been so tired cooking has suffered and take-aways have increased.
She has tingling in fingers but didn't mention this to GP yet.
Any insights/ advice would be appreciated , and some validation from others that she has a genuine reason for feeling so lousy in recent months would be much appreciated ... i'll get her to read / reply when she can .
thanks muchly . Tattybogle x
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Worth having average blood glucose checked by HbA1C test that give the average over the precious 3 months. This is because diabetes type 2 can present with similar symptoms to B12 deficiency.
And HbA1c of 35 is perfectly "normal" but is higher than I would have expected as she has been losing weight.
She sounds a lot like me at a similar age and I just wonder what the underlying cause of her problems is.
It's easier said than done, as she will need to see a specialist hospital for it (most are lousy or worse, to be honest) and there are very few that are good, but I would suggest getting her gastrointestinal tract investigated.
In the meantime you might be able to get her GP to do a fecal elastase test to check her pancreatic function.
It sounds like she might have hypochlorhydria/achlorhydria (low stomach acid) or possibly chronic pancreatitis - something anyway which is limiting the proper digestion of food and/or the absorption of vitamins and minerals.
Also, has she been checked for coeliac disease?
The critical thing to remember is that symptoms are your body's way of letting you know something is wrong. There's obviously something wrong and there's almost always an explanation/diagnosis to be found - which is needed to determine a course of action/treatment, with the aim of eliminating her symptoms!
The aim must be to be well again and it should be possible!
thanku denise .... , yes looks like 'nothing much being absorbed for whatever reason'... and probably been going on for quite some time ....thanks for those suggestions to check out .
This is a blog post originated from listening to a radio program by Dr Jessica Eccles about Hypermobilty/Ehlers-Danlos. Despite not being about thyroid, it might well be worth a look and even a listen.
However, BBC tend to withdraw some programs after a while - some seem to remain for years, others a year, months, or less.
Ideally, folate and iron/ferritin should be checked again after b12 treatment because once the body gets enough b12 it may start using up iron and folate so these values may drop. Taking a general supplement like a multivitamin, and eating well, can help b12 to do its work. No vitamin works alone, but together with other nutrients. Best of luck.
Yes, important to have folate, ferritin, vitamin D and thyroid monitored. When I was found to have B12 deficiency, my folate and ferritin were at the low end of range, so I was given 3 months supplements, as B12 alone was unable to control my symptoms. My vitamin D was prescribed with Raloxifene as it turned out I had osteoporosis of the spine. Thyroid struggling a bit but okay - I did the full panel test as two of my sisters have Grave's.
My folate and ferritin were "blippy" for about two years -and difficult to know for sure if no-one is testing regularly. Mine were tested about every 6 months. My GP said that if ferritin is below 60, deficiency symptoms are possible. My Oral Medicine consultant later preferred over 80 - I was trying to get rid of angular cheilitis and burning tongue, two lingering symptoms.
Initially, my B12 was 196 ng/L (range started at 197) and even at their worst, folate was 5.5 and ferritin mid-30s. So you can see that your daughter has far to go.
Good that EOD injections for B12 have been started and should be continued. The long-term aim is optimum control of symptoms, not accepting a cycle of improvement/deterioration: it can take a while even to notice any difference. For this reason, a daily chart or diary recording symptoms can be useful - gradually, some changes will occur. Eventually, some symptoms will become less frequent, less severe. A pattern might emerge. Some of my symptoms have become so rare that I only remember having had them when someone else here posts about them ! Any other possible conditions can be sought/ eliminated while treatment continues.
Tell your daughter not to give up. There is plenty of help here.
If B12 deficiency is not due to diet, I'd expect GP to at least test for PA (Pernicious Anaemia) and Coeliac disease. These are both auto immune diseases that can lead to B12 deficiency.
Apologies for quick reply as struggling with a flare up of symptoms.
Some links I post may have details that could be upsetting to read.
Have you or your daughter considered joining and talking to PAS (Pernicious Anaemia Society)?
I left detailed replies in the threads below with suggestions of B12 websites, B12 books, B12 documents to read, helpful links for those struggling to get adequate B12 treatment in UK etc ....
thanks very much for those links Sleepybunny . yes , we need to get Intrinsic Factor ab's and coeliac tests done. I w as worried about her starting B12 injections before getting IFab's test in case loading doses interfere with test , but i phoned the lab here to check , and the test they use here isn't affected , so she's going to get injections started and will discuss PA / coeliac with GP at follow up appt appt .
Apologies if I repeat anything you've already read. There may be some links which have details that could be upsetting to read.
It can be hard for people with PA and Coeliac disease to get a diagnosis.
For example
About half of people with PA get a negative result in usual IFA (Intrinsic Factor Antibody) test. There are other tests that can help diagnose PA. See thread below.
Might be useful to write out a typical weekly diet, all food and all drink to show GP. Some GPs might assume B12 deficiency is diet related so could be helpful to show GP she is eating B12 rich foods.
Might be worth having a written list of any risk factors for PA and B12 deficiency to discuss with GP eg
"NICE guideline Coeliac disease NG20" mentions that people with folate, iron or B12 deficiency should be tested for coeliac disease. Try to read this document if you have time.
A person with coeliac disease can get a negative result in usual test (tTG IgA) if ....
1) they have IgA deficiency.
The Total IgA test checks for IgA deficiency. I think NICE guideline suggests testing Total IgA in people with suspected coeliac disease. People with IgA deficiency will need an alternative test to tTG IgA as their bodies can't make the antibodies to gluten that this test looks for. Coeliac UK has a list of alternative tests.
2) they were not eating enough gluten prior to blood being tested.
I would expect her GP to ask her to eat plenty of gluten in more than one meal per day for several weeks before blood tested. Look up "Gluten Challenge" on Coeliac UK website.
Eating plenty of gluten for several weeks should ensure that the body produces lots of antibodies to gluten increasing the chance of a positive test result in those with coeliac disease.
Some GPs might want to test for coeliac disease immediately without asking patient to eat plenty of gluten for several weeks but I'm not sure this is a good idea.
Coeliac UK have an online assessment for Coeliac disease.
It's possible for a person to have both PA and Coeliac disease at same time, I hope her GP will test for both conditions.
Dermatitis herpetiformis (DH)
Coeliac disease sometimes presents as an extremely itchy rash called Dermatitis Herpetiformis. This can be bumps, blisters or more rarely looks like hives.
Might be useful to take photo of any unusual rashes.
Coeliac UK website has info on DH.
Neuro symptoms
"She has tingling in fingers but didn't mention this to GP yet."
Tingling is usually considered to be a neurological symptom. Might be good to tell GP about this soon.
Has GP got a list of all her symptoms, including all neurological symptoms?
I used PAS list below and added extra symptoms to bottom of list.
Time is of the essence in treating B12 deficiency.
Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord can be affected.
"further tests revealed low b12 and i've just noticed the folate / ferritin are also extremely low ;"
I'm not medically trained but my understanding is that B12 treatment would usually be started first in someone with both B12 and folate deficiency.
Is she receiving any folate treatment?
Her folate result is only just within range. Might be worth asking GP if she would benefit from taking a folate supplement if she hasn't been given one.
There are other iron tests besides ferritin.
Maybe your daughter could ask for a full set of iron tests. See link below.
Might be worth reading about macrocytic anaemia and megaloblastic anaemia.
Low b12 can lead to red blood cells that are larger than normal (macrocytosis).
Low folate can lead to red blood cells that are larger than normal (macrocytosis).
Low iron can lead to red blood cells that are smaller than normal (microcytosis).
A person who has low b12 (and/or low folate) with low iron may appear to have red blood cells that are normal size on FBC as effects of iron deficiency can mask effects of B12/folate deficiencies.
Her MCHC is above range and her MCV is close to top of normal range. RBC distribution width is close to top of range.
I'm wondering if low iron could be masking macrocytosis from low B12 and low folate.
eosinophil 0.6 [0.2-0.5]
There are various reasons for an above range eosinophil result.
Two I can think of are
internal parasites eg fish tapeworm
allergies
Does she eat raw or uncooked fish eg sushi, smoked salmon etc.
Has she lived or stayed in an area where internal parasites are common?
Cytopenias
This is when lower than normal amounts of blood cells are produced.
Both low B12 and low folate can lead to cytopenias.
Other useful guidelines/documents/articles I think are worth searching for.
NICE B12 deficiency guideline - published 2024
NICE CKS Anaemia - B12 and Folate deficiency
NICE CKS Anaemia - Iron deficiency
Patient Info website has a good article on non anaemic iron deficiency.
My impression is that there is a lot of ignorance about B12 deficiency among health professionals (nurses/GPs and specialists).
Fingers crossed that her GP is well informed and a good listener.
There's a list of useful info to pass to GPs in one of threads at bottom of my other reply.
Some UK forum members resort to treating themselves if NHS treatment is not enough.
Some get extra B12 injections privately, some try high dose oral B12 (1000mcg or higher) but this doesn't work for some (didn't for me) and some as a last resort turn to self injection (SI).
If you have time, try to track down local B12 deficiency guidelines used by her ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland.
If you can't find them online, best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board askng which B12 deficiency guidelines they are using and for a link to or copy of them.
Some of these local guidelines differ in their advice from NICE guidance.
yes ~ have told her to make sure GP aware soon of tingling, and also to emphasise how much B12 rich food she is regularly eating , and family history of autoimmune disease.
GP sounds good i think (2 working ears and a thinking brain ) ie . thinking about B12 / cortisol without prompting and didn't mention antidepressants once , so i'm hopeful she'll be good to work with .
She's not mentioned folate or anything else so far , just sent a txt to start b12 injections every other day ASAP ( daughter was abroad at time) , and get some very high dose B12 from chemist in meantime. But as you say, usual to start B12 inj first, then folate shortly after , i'm assuming they will prescribe folic acid , but we've got some methyl folate ready ,
thanks muchly for the thoughts about low iron potentially masking macrothingy, i agree ~ iron panel would be a very good idea.
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i hadn't really clocked the IgM... Mmm ...i will add it to her list of Q's for GP.
I'm not sure if she eats sushi , she doesn't at home....she used to have cooked salmon 3x a weeks until last year , when she got put off by fish farms. can't remember if she eats smoked or not , but she hasn't been anywhere parasites are a problem as far as i know.
i guess i was hoping those other out of range blood might sort themselves out in time once B12 . folate/ ferritin are improved.
hopefully GP is open / on the ball without us having to do FOI .... our ICB seems to be on a mission to have absolutely no info about anything available to anyone online ...and it took me about 15 phone calls to find out where the IF blood test is done.
Thanks very much for your time when your feeling rubbish xx
"our ICB sems to be on a mission to have absolutely no info about anything available to anyone online"
FOI requests can be very useful although it can take a while to get an answer.
Put FOI or Freedom of Information in search box on ICB website.
I and other forum members have in past posted links to ICB local guidelines.
Search forum posts (top left of screen if on computer) with terms "Local guidelines B12 deficiency" which should show some of them.
Many ICBs and Health Boards will be reviewing their local guidelines due to new NICE B12 deficiency guideline published in 2024. Look for review dates when you find relevant local guidelines...they can also change at short notice.
I'm glad that the GP appears to be more switched on about B12 deficiency than some.
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written including one for Mayo Clinic in US and BMJ (British Medical Journal). His most recent article was published in 2024....search for "Wolffenbuttel 2024 B12 deficiency" to find it.
"didn't mention antidepressants once"
GP seems more enlightened than mine. I was given several antidepressants to try...none of them worked. My mental health only improved when I finally started B12 treatment.
B12 deficiency and Mental Health
B12 deficiency can have a profound effect on mental health. It did with me...sadly it could have mostly been avoided if I'd been treated earlier.
I'm mentioning it because many people with B12 deficiency end up with diagnoses such as hypochondria, psychosomatic symptoms, functional neurological disorder or if you're unlucky all of the above because they exhibit both neuro and psychiatric symptoms at the same time.
Anxiety and depression are common symptoms of B12 deficiency.
Folate deficiency can also lead to neuro/psychiatric symptoms although I think this is less common.
If GP is unhelpful about giving adequate treatment then might be worth discussing that inadequate treatment increases risk of developing permanent neurological damage.
PAS have an article about SACD, sub acute combined degeneration of the spinal cord which might be worth showing to an unhelpful GP.
Functional b12 deficiency is where there is plenty of B12 in the blood (sometimes even above range serum B12) but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, homocysteine and Active B12 (holotranscobalamin) tests can help to diagnose functional B12 deficiency.
Results of these tests may be affected if person has been taking B12 supplements or B12 injections.
Functional B12 deficiency is mentioned in one of the threads at bottom of previous reply.
I also mentioned it in thread I started recently. See below.
"no apparent thyroid issue's , we originally wondered if she was going hyperthyroid as symptoms fitted but TSH/ fT4 / fT3 all ok /checked twice, and TPOab negative)"
Have you seen the actual results for these and have you compared them with older results to look for trends over time?
I learnt from bitter experience to always check my results after being told everything was normal and then finding abnormal and borderline results when I checked.
There are other thyroid tests besides the ones you mentioned.
Might be worth asking questions on Thyroid UK forum on HU if you haven't already. It's possible to have thyroid symptoms with normal range results.
Many on here report thyroid issues as well as PA/B12 deficiency.
I have long suspected I have a thyroid issue but results are always within normal range. Results for some thyroid tests can fluctuate throughout day. Thyroid UK forum should be able to discuss best time of day for thyroid blood tests.
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Newbie and Advice would be greatly appreciated
Searching for a diagnosis (DESPERATELY) Please helpppp.... Is B12 deficiency / PA possible with these blood tests??? NEW HERE
Blood results as requested on my other thread
B12 levels dropped over a year.
