i have just posted this on pa site, but would also be grateful for any input from those on here who have already got their heads round how to deal with B12 deficiency / low folate / ferritin
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 seem 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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The one thing that stuck out for me was the morning nausea - assuming that is what precedes the retching.
My 18 year old mentioned morning nausea to me last week.
She has ambiguous tsh trends and lower-ish free Ts, ultrasound normal, no antibodies. Normal cortisol. Supplementing key vits/mins to optimal. She’s got lots of typical hypo stmptoms, including irregular periods. I’m still testing and observing.
Anyway, the nausea in the morning likely culprits are sex hormones, possibly adrenal. Obviously the whole HPO-HPA system is connected.
But for me the morning nausea made me look deeper into estrogen fluctuations, and start to think about pcos-insulin resistance that can affect blood sugar, and other related histimine and cortisol dysregulation.
Anyway - as I track her thyroid and vitamins - just saying that sex & adrenal are related areas to consider.
I suspect that what FIR has said will be playing a part in your daughter's symptoms, and wonder if the contraceptive pill and mirena coils etc. are , and have been playing a part in cultivating problems , like thyroid problems, we would not otherwise have developed, had forms of birth control not been allowed to mess with our bodies. Don't know, and not asking if your daughter uses birth control, or not.
With a B12 reading of 145 when bottom of the range is 203 she must feel like death warmed up. In 2013 I asked for B12 to be checked as losing feeling in hand, arm and soles of feet. I think I was around 168 with bottom of the range 190. I could barely walk, felt NAUSEOUS all the time, and a strange kind of dizziness. I was at rock bottom, and could barely get off the couch for 3 months. Previous requests since 1987 to test B12 had been refused. I had a diagnosis of M.E/Chronic Fatigue Syndrome, whose symptoms, I pointed out to my G.P., are the same as B12 deficiency symptoms. I was given 25mcg cyanocobalamin B12 tablets for 3-4 months, and when reading rose to 444 (190-900), told that was ideal and they would stop the tablets! My diet had been full of b12 and I had been taking B12 supplements. Fast forward to 2024 and despite supplementing huge doses of the active forms of B12 (adenosylcobalamin and methylcobalamin) , am still severely functionally B12 deficient, as cobalamin in a hair mineral analysis test is non existent.
Your daughter cannot not feel absolutely dire with B12, folate and ferritin at these levels.With ferritin at 13 she is anaemic as NICE guidelines say under 30 is iron anaemia. I was 22 in 2004 and because the range started at 13, it wasn't acted on , nor mentioned as being low. I now know better, but it explains why I was so exhausted all the time and constantly needing to sleep. She can be very optimistic for the future, as she is extremely lucky to have a G.P. who has prescribed B12 injections for her, and she has you, Tattybogle, one of the most valued researchers and contributors to this forum, and you've got her back. That being the case, with your knowledge , understanding and ability to ferret out answers, you can likely stop your daughter's decline into what would most likely become thyroid disease or dysfunction, eventually.
I would urge you to read the web site b12oils.com from cover to cover. The amount of detailed information re .B12 deficiency and how it impacts thyroid , iron /ferritin , folate etc. is mind boggling. The information is gold-dust. Even if injecting the active forms of B12 (adenosylcobalamin and methylcobalamin), if vit B1, and especially, vit B2, are not in sufficient supply, B12 is biologically inactive, even if blood tests show over-range B12. All the B vits are needed, BUT FAD and FMN are crucial to activate B12 biologically, which derive from B1 and B2. The site goes into why b12, iodine, selenium and molybdenum are also crucial , along with B1 and B2 , for proper thyroid function.
The IGennus and Thorne B vitamins are markedly different in the amounts of each b vitamin they supply. For example, Igennus Super B complex contains 20mg of B1, whereas Thorne has 110mg B1. Thorne has 140 of B3, whereas Igennus has 48.
By a bit of a fluke I have discovered that I am B2 deficient, despite regularly taking a daily 10 mg dose in a Thorne Basic B capsule. I discussed and highlighted this a while ago in a previous answer to a post. The b12oils.com site advises that to be taking enough B2 to activate B12, your urine needs to be bright yellow- otherwise you are not taking enough. There are many reasons you can be B12 deficient, other than pernicious anaemia. If B1 or B2 deficient, you would be biologically B12 deficient, for instance.
The injections your daughter will get should be hydroxocobalamin (don't accept cyanocobalamin, per b12oils.com) B12. Some people will be unfortunate and not be able to convert these inactive forms to the 2 active forms. Hopefully, this won't apply to your daughter. Methylcobalamin B12 injectables can be bought from German pharmacies, but you would struggle to get Adenosylcobalamin injectable ampoules from anywhere. I mention this only to make you aware that even succeeding in getting b12 injections on the NHS, they are not always fail safe.
Should you ever want to try bumping up B1 and methylcobalamin with transdermal cream, that is available in the UK, but c.£50 a tube and it stinks to high heaven, even unopened. I have an unopened tube in my bedroom in a basket, and the whole room stinks of it!
In retrospect , could your health decline into hypothyroidism and ill health have started from a B12 deficiency you did not know you had? Is your daughter , history repeating itself?
I sincerely hope your daughter's health can be completely transformed by a speedy intervention with injectable B12, and believe it is entirely possible, but bearing in mind the possible pitfalls i have mentioned above.
Hi there - tis moi - these comprehensive blood tests are similar to those I have regularly every three months at hospital appointment so look familiar. Obviously I am no medical person but I have developed the knack of reading tests results over decades. Nothing looks ominous as far as I can see - the only thing I can see is that the ferritin figure is low and so is the B12 figure -as you have stated.
Her ferritin level could be due to the B12 deficiency - quote Given B12 is required for the production of red blood cells, a deficiency in Vitamin B12 can lead to a deficiency in Iron. This is why the onset of anemia is often the result of a B12 deficiency rather than an Iron deficiency on its own Unquote
Where some of the results are just marginally high or low this can be due to dehydration at the time of the bloods being taken.
Notice urea level is slightly low and I mean slightly but that goes with B12 def.. too.
One of the ways you can find out if B12 is actually getting through to the cells is by having a homocysteine test taken and if high this will show what is going on. If you want to decrease high homocysteine which is not a good thing to have then take Vitamin B6 which will reduce it and it is a wonderful vitamin and give you energy.
Quote Vitamin B6 and vitamin B12 can be taken together, and are often combined in multivitamin supplements and in B-complex supplements1. They both participate in red blood cell production and help boost immunity2. Researchers had previously believed that vitamin B-12, when combined with folic acid (vitamin B-9) and vitamin B-6, might prevent diseases of the heart and blood vessels by reducing the levels of an amino acid in the blood (homocysteine Unquote
You really need to get the B12 up to the upper level - my hubby had levels of 680 top of range 800 and yet I have found out he was severely deficient by symptoms being experienced.
Quote The Powerhouses Behind Vitamin B6
Vitamin B6, or pyridoxine, is a versatile nutrient involved in over 100 enzyme reactions. It's primarily known for its role in protein metabolism and cognitive development. B6 also aids in the production of neurotransmitters like serotonin and dopamine, which regulate mood and sleep. This makes it an essential player in maintaining mental health and enhancing brain function. Unquote
The tingling of the hands etc. sounds like either carpal tunnel which B6 will 'cure' or B12 def. - if you want to know the best vits to take please just ask and I will let you know best ones.
Vitamin B12 deficiency can lead to physical, psychological, and neurological symptoms. Physical symptoms of B12 deficiency may include diarrhea, fatigue, muscle weakness, lack of appetite, unintended weight loss, and more.
A deficiency in Vitamin B6 can lead to a variety of health issues. Common symptoms include fatigue, irritability, depression, and weakened immune function. In severe cases, it can cause nerve damage, leading to numbness or tingling in the hands and feet. Recognizing these signs early can help prevent long-term complications.
Your daughter has pernicious anaemia. It's been missed for a significant period. The symptoms, weight loss,tingling, morning stretching, fatigue etc all caused by pernicious anaemia.
Hi everyone hello tattybogle. Sounds like your daughter has precinious anemia. It is an autoimmune disease and affects the blood, nerves, heart etc. It is where your B12 levels are very low. It affects the absorption of iron in your body. I have had it and may still have it. I remember feeling tired climbing just 6 steps. I remember tingling over my entire body as if something was crawling on my skin. I swore I was going mad.I was prescribed Neurorubine Forte which I take 3 times a day. I am also give iron 200 mg once daily, I have supplemented with magnesium 200 mg also. My precinious anemia may have stemmed from being on epileptic medication since age 12, I am now 55 and this started gradually in my late 30's. The first symptom I had was extreme tiredness and weakness. I struggled to get out of bed and go to work, I was dizzy and lightheaded most of the time. I was give B12 injections and intristic factor a type of liquid iron I felt extremely well then. However, I didn't know how terrible this illness could be and thought it was a one time thing. It seems though that you need to be on B12 supplements, along with iron and an extremely rich diet including lots of fruits and vegetables along with your protein. Things like lettuce, and other green leafy vegetables are great. Try to limit refined foods. The take outs on a regular basis would be determintal to her in the long run.
The reason I mentioned the long term could be determintal is that unknowing to me that this was to be a lifetime therapy for me I stopped. This is when the tingling started over my entire body, also I had just gone through some extremely rough times in my relationships, high education etc. I also developed hypothyroidism which is another autoimmune disease and I am now told I have extreme anxiety I am on propranolol also, even though I was told it was for my migraines and flouxentine for anxiety. I am also given folic acid /folate
In the meantime time I wish you all the best and would just like to say please take care of your daughter so her condition doesn't worsen and remind her to inform her GP about her tingling and any other symptoms she maybe experiencing.
I live in the Caribbean so I am not sure if the B12 supplement maybe available another name in the UK but it comprises of B1, B6, B12.
Hi Tattybogle, unsure if this will help but I have alot of similar symptoms to your daughter, my gp referred me for an urgent gastroscope (i have these episodes of struggling to eat anything, extreme indigestion etc) which showed lots of non erosive oesophagus/gastric inflammation etc, I especially have the morning retching and ppis don't seem to help, various biopsies have been taken to exclude EoE and sinister things but my gasto has been useless and I've suffered this for 4 years now I can lose lots of weight at times too. it's taken my gp to step in and help. I thought I might be allergic to my thyroid meds or something hormonal but I'm not sure now could possibly be autoimmune in my case. I noticed your daughters eosinophils are raised, does she get random allergy symptoms like itchy sore eyes etc. I have these monthly flares with severe joint pain around the time of ovulation/my period. Hopefully she feels better soon 🙂
Hi mamamay, just looked at a couple of your previous posts re your perimenopause symptoms post ovulation. Me too!!!
I’m a newbie when it comes to HRT, but after many months of tracking my Basel temperature and ovulation day, and symptoms, I have now concluded estrogen dominance for me post ovulation through day 1 of my cycle.
I’m about to get an Rx for bioidentical micronized progesterone - taken only for days 14-28.
I don’t have GI issues (as far as I know), but posting here as relevant to you and Tatty as we all manage our daughters health along with our own! I have to be careful to rmemeber my daughter is not me… and not assume she feels like I do… she’s 18 now, and it was quite the observation/mind-reading exerciser through the already fraught teen years!!!
Thanks tattybogle for posting this and for the great dialogue.
Thank you for your lovely reply FallingInReverse, I only wish i felt like I was 18 again. Sometimes it's helpful to have other people's experiences, we all would do anything for our little/big ones so hopefully they never suffer the system like we have, your daughters are very lucky to have such great mama's x
With those results she will feel pretty awful. Good she was given EOD injections (If hydro or methyl, with cyano she would need every day) and she should have been given 5 mg folate tablets to be taken immediately as without good folate her injections WILL NOT work. Folate (folic acid) to be taken for 4 months and then reassessed but should be always in high teens at least to start with.
If her symptoms (especially the neurological ones) do not resolve after the loading doses she should continue on EOD until resolution which might be the tricky part. Once on injections her B12 blood levels will be useless and should not be routinely tested. All of this is in BNF on the doctor's desk and current guidelines.
To test for PA she should have had Intrinsic factor antibodies (40-60% accurate so negative IFAB DOES NOT exclude PA) and parietal cells antibodies and if IFAB not positive also MMA and homocysteine. All of these before jabs start. You can go on searching for the root cause of decifiency other than PA but if she has very low levels like that with a normal diet, there is malabsorption present which probably will require injections for the rest of her life.
She does need her ferritin to be around 100 and her vit D around 80. There are groups for both on FB and the best group to work with B12 D in my opinion is Pernicious Anaemia/B12 Deficiency Support Group where you can upload all these results as well and read loads of files on all aspects of PA and B12D and related subjects. All the best for both of you.
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