Hi I am writing for some help with helping my daughter. Back in July she had blood tests done as she suffers with lots of symptoms and also has had am underactive thyroid since she was 4 (she's now 22) The blood tests came back with low Vit D (now on supplemdnts) and B12 of 136 and folate 11.6
We started her on a b12 spray and she's just had her results ...b12 is up to 316 but folate is down to 5.6. She has had really gad painful knees and neck and shoulders and I'm just so overwhelmed thinking is this because the b12 is waking up her muscles or could it be a touch of fibromyalgia or long covid ??? She also has lots of gut problems and I just feel so sorry for her but I just dont know where to start with trying to sort her out as they all seem so interlinked ????
Any advice would be so welcome
Thankyou
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BumbleBumps
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I hope that your daughter gets the help and treatment she needs but suggest that you both read about B12 deficiency as there are health professionals in UK whose understanding is lacking.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
If neurological symptoms are present with B12 at 136, it would be expected to start loading doses of regular B12 injections rather than oral. Is the reason for the deficiency known or being investigated? The gut problems could be causative of the B12 deficiency or happen as a result of it but should be investigated as B12 absorption needs a lot of moving parts to function correctly including good stomach acid and presence of something called "intrinsic factor".
Its quite normal to experience increased pain when treatment of a significant deficiency starts as nerves wake up and start to transmit information about damage that was not previously being sent properly due to neurological damage. It will improve but takes time.
It may be helpful to take a low dose, from 200-400mcg of folic acid or folate to keep folate levels in a good range during treatment. Check this with your GP. B12 levels should be corrected before folate.
We do see attempts to withdraw treatment once B12 levels have risen and are back "in range". This is not best practice for B12 treatment and will often cause symptoms to return. Treatment frequency should only be reduced once the injections are no longer improving symptoms and in the case of PA, injections will be required for life.
Did the Doctor put her on injections in July? With a B12 level so low they really should've started her on loading doses. Her level needs to be into the 1,000s and many suggest that is the minimum level for healing to start.
Yes the gut could be the cause and symptom of B12 deficiency. She needs injections asap as per NICE guidelines to resolve these issues. But they must also investigate Pernicious Anemia with IFAB testing.
Do push your GPs hard for help. Most of them haven't the first idea about B12, nor does most of the medical community. Its very alarming but sadly a consequence of poor training and money (more money to be made is prescription drugs than vitamin injections).
He said he would but to try a spray first. My levels are 210 and they just said i was normal. My daughter didn't get and neurological symptoms apart from 1 night her legs going numb ....I get loads ...my big toe has been numb for years and I get alot of pins and needles in hands and feet and various other things....its all so disheartening
If you can't get injections now then you should consider helping her to self inject. If your levels are also low then you can both do it together. There is lots of help on this forum.
Well they said it wasn't anemia and he said he would give her injections but maybe to try a spray first ...which we have and its up 316 but her folate has gone down but I'm thinking is that because the b12 has used it to increase ? I'm a bit overvwhelmed with it all to be honest as there are so many elements to it. I just want to sit her down in front of somebody and say "please just sort it all out" but you just seem to have to battle to get any one test done but it's a whole wheel that needs to work together x I have booked her in with a private gut doctor to see if that helps but not sure if I should sort the gut then the deficiancy or the other way around x I feel so sorry for her and just want to balance her out x She has painful aching knees and shoulders and back but im wondering if it's the b12 starting to wake things up ???
"I just want to sit her down in front of somebody and say "please just sort it all out" "
I really hope you find her a doctor who listens.
I can so relate to your comment for myself.
I was desperate to find a GP who would take over all the effort I was making to find out what was wrong and to do it for me but in my case I learned a really hard lesson and that was that sometimes the only person who is going to help you is yourself.
I am so pleased that your daughter has you helping her.
Some UK forum members turn to treating themselves as a last resort if NHS treatment is not enough for them.
Some get injections from private GPs or beauty salons, some try high dose oral tablets but these don't work for some people and some turn to self injection using injectable B12 from Europe.
Article about a survey of patients who self inject B12 in UK and their reasons for doing so.
Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey
Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti
it really makes me so angry, infuriated and frustrated that the medical professionals across the board know nothing or very little about b12 and the massive impact that It has on our health. I was given 8 weekly injections for years then our surgery was taken over and all patients on b12 were given blood tests. Those in good range (which would’ve been all of us)!!! had our injections stopped. I had zero negative antibodies but I’m coeliac and sjrogrens and didn’t show antibodies for any of them, so antibodies are mute I’m a way. Don’t let your health suffer, take control like we all have to and order b12 online whilst trying to battle it out with the Drs. Good luck.
It's just so hard and with my doctors you call on a day and get a telephone a week later then another 10 days getting the blood test and result ....all for only part of the puzzle. I'm not in a financial position to but I would pay to take her privately if I thought that would help her xx
firstly has she been tested for coeliac disease? Coming off wheat anyway may help with her gut problems, she definitely should be getting b12 injections you can now get these from beauty salons ect , google your local area, taking a form of folate Lmethylfolate which you can buy anywhere is the best most absorbable form as some people do not convert the regular folate , also taking an iron protein plus supplement… I had your daughters symptoms and I was finally diagnosed coeliac and the above is what eventually got me well again … best of luck!
Her blood test was <0.5 ku/l and the normal range says under 14 so I'm presuming that's a good result regarding celiac?? She us gluten free but with bread / pasta/ biscuits ect butbim sure dome creeps in because its in alot of foods without hou knowing ...so she does avoid the basics ...but not super strict
She's been gluten free for years as she was diagnosed with an underactive thyroid at 4 and apparently most people with UT are gluten intolerant/sensitive. She's definitely a bit better gut wise and if she does eat gluten she flares up. Strangely she went to Germany fir 3 weeks and ate full on Gluten every day and was absolutely fine ?? Did have sauerkraut and kimchi most days do maybe something in that?? The celiac test came back negative but it woild if she'd not eaten gluten although the level was very low and and so I'm hopeful it's not that x
It seems that we've got a high incidence of Vit D deficiency, and it probably gets worse in Winter, but that's easily treated although it's important not to overdo it.
Treating B12 deficiency orally seems to be working for your daughter.
Her folate has fallen as her B12 has risen, and that's not really a surprise either. A State-Registered dietitian might be able to help you by considering your daughter's diet. Good luck.
I wondered whether to increase the strength of the b12 spray as she has risen alot over 3 months. Not sure if it will level out now or continue to climb over yhe next few months. Do fobuou think I need to hive her folate as well ?? I'm so nervous with supplements to make sure I use the right strength and dont overdose. I just can't believe that doctors are so behind on all this as its so common !!!
I can't advise you on treatment or dose change. That's where doctors come in, regrettably!
I'm pleased to see you are cautious about overdosage. Most of us get enough folate from our diet, and folate isn't stored; so it's a matter of keeping your intake up. B12 stores, on the other hand, can be enough for 3 to 5 years when someone is replete.
A State Registered dietitian [all NHS ones are] has a protected title which is hard to get, and is qualified to advise, and I'd attempt to see one of those before getting too far down the line.
Thanks for that. Four months isn't a long time compared to a B12-replete person's B12 stores. Like many journeys, it all depends on where you start. A poor diet [as far as folate goes] runs down the body's folate in a short space of time. As it's water soluble, excess folate tends to leave us simply, in our urine. Little but often seems to be the watchword.
If you monitor folate by measuring red cell folate, then that's rather more stable because it's in the red cells. The test however is a bit more technical, so it's unlikely to be available everywhere.
You’re right about the interlinking BumbleBumps — I can’t find the specific research at the moment but it is well documented that many of those with thyroid disease also have B12D/PA and vice versa.
As I understand from the BMJ research document, NICE guidelines, UKNEQAS, etc, your daughter’s neurological symptoms, together with low B12 results, may mean that she should be having B12 injections every other day loading doses for neurological symptoms until no further improvement.
Some links* below on the correct treatment regime. Might also be helpful to write a letter or print out, if possible, for her to discuss the relevant points with her surgery. She may have to be quite assertive (helps to have someone close accompany her) in order to ensure GP provides adequate injections :
* BMJ Research Document: bmj.com/content/349/bmj.g5226 (Summary only but GPs can access full document behind a paywall):
“Summary points:
*B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
* There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
* There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
* If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features”.
It also states bottom of page 4 ' under, 'How is Response to treatment assessed':“once treatment is given blood levels will inevitably increase but it is the clinical condition of the patient that is paramount: "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
………………………………….
.* UKNEQAS B12 Treatment Alert: Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections (even if B12 is within normal limits)
……………………………………..
*. Misconceptions About B12 Deficiency :
Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and without large red blood cells - stichtingb12tekort.nl/weten.
B12 Deficiency and Intrinsic Factor - (I.F. Can Be Negative and Still be PA) stichtingb12tekort.nl/weten.
I also had Amazon send Dr J Chandy’s book, “B12 Deficiency in Clinical Practice” (very reasonable price), to my surgery.
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VITAMIN D + K2 :
drannaforbes.com/over-200-s...
Dr. Gareth Davies, PhD Medical Physics, Imperial College, London, himself takes 30, 000 iu daily. Codex World’s Top 50 Innovator 2019. Independent Researcher. Lead author of “Evidence Supports a Causal Role for Vitamin D Status in COVID-19 Outcomes.” (organizing signatory)- 4000 IU-10,000iu.
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Re gut problems, several in our family suffer from gut problems as well as thyroid disease and PA. I found relief eventually after following a routine of kefir first thing in the morning and sauerkraut with or after meals (other bitters also work, eg. lime, lemon, ACV, or the herbal, Vogel’s centaurium - more convenient when out and about.
Dr Mark Hyman wrote a very interesting article on the gut connection to autoimmune disease.
Yes ive just started her on the kefir , activia sauerkraut.... I'm hoping to get her gut tested for SIBO , H pylori and just everything I possibly can x Shes just been diagnosed with PCOS just to make things even worse:((((
Wondering if PCOS will be helped once her body has sufficient B12 over time? I found many symptoms re. migraine with aura, thyroid, digestion, etc. ) some of which I’d had since a young age, were alleviated or disappeared over time once my body had sufficient B12.
Looking for something else, I just found what seems another excellent link :
There have been stories in Press about people using nitrous oxide as a recreational drug and suffering neurological problems as a result.
Any chance of internal parasites eg fish tapeworm?
Does she eat raw or uncooked fish eg sushi, smoked salmon etc?
Has she ever lived or stayed in a place where internal parasites are common?
Search online for "parasites B12 deficiency" for more info.
One clue that a parasite might be present is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found with Full Blood Count results.
Drugs/medicines
Has her GP reviewed any medication she's on?
There are some medicines/drugs that have been associated with low B12 levels (and some with low folate levels) in some studies eg
metformin, a diabetes drug
PPI drugs
some anti-epileptic drugs
There are others.
Any concern about medicines/drugs should always be discussed with a doctor. Local pharmacist may also be useful to talk to.
There have been other forum members here who had PCOS so may be worth searching for their posts.
I'm going to a Gut specialist on Monday so hoping he will explore and eliminate the bug /parasite avenue . She's only on thyroxine and she doesn't eat raw fish or lived anywhere but home x I just feel so hopeless and fun down about it all:(((
"My levels are 210 and they just said i was normal. My daughter didn't get and neurological symptoms apart from 1 night her legs going numb ....I get loads ...my big toe has been numb for years and I get alot of pins and needles in hands and feet and various other things"
Looking after yourself
You mention a B12 level of 210 and that you are getting loads of neurological symptoms.
What sort of treatment are you getting?
Both PA (Pernicious Anaemia) and Coeliac disease are two auto immune conditions that can run in families.
Have you been tested at least for PA and Coeliac?
UK guidelines indicate that people who are symptomatic for B12 deficiency should be treated.
See links to NICE CKS lB12 deficiency and Folate deficiency and BSH Cobalamin and Folate guidelines in one of my other replies.
See blog post below about being symptomatic for B12 deficiency with an in range serum B12 result.
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
My story (short version)
I had had 5 or 6 loading injections in past after a low b12 result and trusted my GPs when told I didn't need any more. I only found out later that I hadn't been treated correctly.
I had 50 plus typical symptoms, many neurological problems and my mental health was affected. Life was really hard.
When I finally realised I hadn't been treated correctly, I started to campaign to get more B12 injections.
They refused as my serum B12 levels were well within range (from 300 - 500 ng/L) so I had to resort to self injection (couldn't afford to get B12 injections privately).
I only resorted to SI when I had exhausted every possible way to get B12 injections from NHS. I wrote letters to GP, passed on useful info from PAS etc. I tried high dose oral B12 tablets but although they helped a little bit they didn't tackle the severe symptoms I had.
I finally started to improve and my symptoms started disappearing.
I have a life that I can enjoy now and wanted to tell you that it is possible to get treatment even if NHS is unhelpful.
PS. Just found part of the article by Mark Ryan, MD on an old link.
Hashimoto's Hypothyroidism and PA are both autoimmune and, as you probably know, once you have one autoimmune condition, you are likely more prone to others. Many researchers believe leaky gut/intestinal malabsorption is the source of autoimmune problems and I believe this is at the bottom of all our own family gut/autoimmune/Hashimoto's thyroid/B12 issues.
A précis of Dr Marc Ryan's article below is one of the simplest explanations I've found re. leaky gut and lack of absorption leading to thyroid/B12def. and other autoimmune diseases. One of his recommendations is a gluten free diet :
……………………………….
“Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"
“Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability. Many researchers believe that this is ground zero for autoimmune disease. It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow.
In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.
The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.This is the place where absorption happens.
And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)
One of the reasons for this is the breakdown of these brush borders. Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.
The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."
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I do hope you and your daughter find answers and good treatment BumbleBumps.
I can identify with your confusion and concern for your daughter. I have just been diagnosed with PA and I suspect my daughter may need help as she is showing symptoms too.
This is what I would do in your situation based on my experience and advice and help I received from all the wonderful people in the forum. It is what I have done for my daughter and me.
Most importantly don’t give up hope you will find the support you need from this group.
You need to focus on FACTS and not worry about the unknown as that’s a rabbit warren. Facts are:
1 your daughter is B12 deficient - evidence is tests and symptoms
2 Your daughter can absorb B12 - evidence is increase in B12 albeit modest
3 The B12 needs folate to work - evidence drop in folate levels
4 B12 healing can be painful - forum evidence increased discomfort in symptoms before improvements
5 Fermented foods improved her gut health - evidence her diet in Germany.
This would be my approach in your situation:
As said above it appears your daughter can absorb B12 by means other than injection. GREAT! You cannot overdose on B12 so I would suggest you speed things up yourselves. First also take a folic acid supplement - over counter is available and follow dose guidelines - B12 needs this to make healthy blood cells. Also take a sublingual medium dose tablet or liquid B12 which is relatively cheap to buy and take over the day if necessary to ease B12 loading.
Then look at diet: my daughter and I both feel better drinking keffir daily and we eat poke bowls - rice with fresh and preserved vegetables and a small portion of fish/meat/ tofu. We avoid bowls of pasta, sandwiches, pizza and heavy meat meals as we feel uncomfortable afterwards. We can enjoy biscuits and cakes - I think this is because our gut health is improving and our revised diet is kinder to our stomach.
Keep a journal of medication, food eaten and symptoms. It is amazing how much this will reveal and you can tailor your treatment. For example I realised that it was easier for my body to take oral supplements such as Vit D and folic acid in the evening with a drink of keffir. I have also found that medical advisors take more note when I explain why I want to do something or change something- they call it “self-management “!
The above will buy you time to think and should improve how you and your daughter are feeling and help you gain a better understanding of the way forward.
Then I would find a private consultant with expertise in Anaemia I found one in Cambridge via a member on this forum. He’s been amazing giving helpful insight and advice even before I booked an appointment. He is going to teach me to self inject. He will see my daughter once we know what my situation is. You are also seeing a consultant. Ask if you can record the consultation so you can listen to it again. (Advice from this forum) I did this and there was masses of information that I didn’t pick up face to face because my brain was overwhelmed.
Once you know what you want to do I would put it in writing to your GP practice again I learnt this useful info from members here. Sleepybunny gave a letter writing link - I copied below but it may not work so you may need to look in Sleepybunny’s reply
b12deficiency.info/b12-writ...
I have written to my GP telling them how I wish to manage my PA and referencing the relevant guidelines etc. I want to self inject - it should be a win-win solution and I have made this clear to the surgery. It will be harder for a surgery to ignore requests in writing that align with guidelines.
As you progress and learn more your needs will change - mine are changing and I am feeling much better. I have no medical training but I am an engineer so I am quite analytical in my approach and I have received the most wonderful help from this forum.
Sorry fir such a long post, I wish you all the very best - sounds like your daughter is very lucky to have a mum like you!
Thankyou so much for allbtaking time out of your day to reply to me. I did think myself that she has had a negative celiac test and her B12 has increased with the spray ..evennif not enough yet ..and with the folate dropping am I correct in thinking that's because the b12 is working a bit more so using the folate ?? The fact yhe spray has raised the levels from low 100s to 316 in 3 months I'm hopeful its not an absorption issue (they also said she wasn't aneamic) and maybe more a gut issue ?? Its just so confusing x I think i need to maybe increase the B12 dose..include a folate supplement , have a private gut appointment on Monday and attack all of that and retest in 3 months??
I'm pleased to read that her b12 levels are rising but are her symptoms improving?
Have a good look at the symptoms lists I posted in another reply to check whether she has any neuro symptoms. You mentioned legs going numb which is a neurological symptom.
My understanding of Uk B12 deficiency treatment is that any patient with B12 deficiency with neuro symptoms should be on following pattern of treatment
A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance B12 injection every 2 months.
As far as I know (I'm not a health professional) this applies whatever the cause of the B12 deficiency even if it's dietary.
There is no set time limit as to how long the every other day loading injections can continue for. Could be weeks or even months of them.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Some of these may be available from local library service.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF treatment info is out of date in above book. See BNF hydroxycobalamin link.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
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Advice needed regarding doctors treatment of low b12 and low folate, please. 
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