I've just got off the phone to GP and she has sanctioned loading doses EOD.
She initially offered once every two weeks. I said 'Oh I though they were supposed to be EOD' and she said 'Well she doesn't fit the criteria for deficiency' but seemed to consider for a few seconds and then said 'Ok but we'll try it'. Phew. In this case, she has decided to do her own thing re guidelines and it's to my daughter's benefit. I shut up then in case she changed her mind!
So my question is, when should my daughter start supplementing Folate again, if at all for now? Her June reading is 45.4 (8.83-60.8) which is a massive rise due to supplementing up to 1600mg for the last two months. Previous was 8.91 in March.
Vit D in June is 150, Ferritin 66 (30-150).
Thank you for your help. And THANK YOU again to everyone who has helped my daughter by answering my questions. Strangers offering their time and energy to a girl and her mum who they'll likely never meet. I can't really express what that means. 🌝
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Sneedle
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Thank you - she'll be pleased not to have to take separately. The B complex we use has 400mcg so I think that shouyld be ok.
Yes fingers crossed, poor dab was saying she struggles if she has to look down eg. emptying dishwasher, looking at laptop, phone, gets a sort of car-sickness feeling. Did you mention somewhere about needing a hat in shopping centres (for the light onslaught and the general stimulation), escalators and vestibular something? It sounded similar to the way she has described thigns to me. She's also really unstable on her feet at times, always banging into things.
Have you had PA for about 4 years did you say? I'm guessing in theory, you could keep improving, based on what jade_s has said about symptoms going years and years later?
I'm praying she gets big time symptom relief. I'm pretty certain the gp is going to pull back the frequency of injections once the 6 EOD loading doses are over, so I may be back asking for suggestions to deal with that scenario! We'll see.
If no big relief, then we'll continue onwards with thyroid as the next step and the EDS stuff.
You've had such a fight of it and an awful time. Pfffft. And your daughter too, and you having to fight through all of it. I'm really hoping for you that you continue to get a reduction in symptoms, I think jade_s has said some of hers took 6 years to go.
My daughter is 19. She, like you, has negative IF and the GP is going on description of her symptoms and active b12 of 45 (medichecks).
The Cawthorne exercises sound like they could help. I'll look them up.
I'm thinking that as soon as the initial six doses are over, the GP is going to get lax and let it go to a much bigger gap, or even not proceed if no improvement.
My daughter has an appointment on 31 July which I'm going to go to. I want to push for continuation until symptoms subside - not sure if my daughter does though! She is so used to her symptoms that she thinks everyone has them which has made it really difficult over the last 3 years to figure out what is going on. Her main debilitating symptom has been fatigue and she only occasionally mentions the visual stuff, when I ask her she comes out with the 'supermarket syndrome' symptoms mentioned by yourself and Cherylclaire - and still plays it down! Tricky.
Sneedle : If the GP is doing the necessary EOD loading dose, it would be a good idea for her to monitor folate, ferritin, vitamin D too. Just to ensure that these are remaining at optimal levels and stable.
When my B12 injections started, my folate and ferritin levels were low range (never below that range), but both supplemented by GP for 3 months initially as I was still getting symptoms that she felt may not be solely to do with B12 deficiency: bleeding gums, hair loss. After that, she checked levels regularly - both were difficult to stabilise and it took a couple of years of on/off supplementing led by test result and symptoms before both managed to right themselves. At one point I needed 800mcg for a while to raise folate. Now I don't supplement either.
B12 being treated by frequent injection: nothing monitored there, as "pointless", in her own words. Quite right.
I would not have liked to supplement folate or ferritin without advice, testing and monitoring about when to start or stop. Not because I don't trust my own judgement so much as that I had so many symptoms at the beginning that could have been attributed to almost any vitamin/mineral deficiency. These also took a while to stabilise.
As for the vitamin D, I was found to have osteoporosis of the spine, so get vitamin D and medication on precription. Now reduced to osteopenia, so I know it's all working !
I also had a full thyroid check - 6 tests - including autoimmune tests not to my knowledge available on NHS. This more to do with advice and two sisters with Grave's disease, an autoimmune thyroid condition. Thyroid struggled a bit but is okay. No Grave's.
There is a "supermarket syndrome" which seems to be a difficulty with the sensory onslaught that brings: dizziness from too much head-turning and tilting, too much visual information, confusion re mazelike layout, bright lighting, too much rapid peripheral movement to take in, and of course noise levels. I would be totally exhausted by a shopping trip, and yawn all the way home ("the sighs") then throw everything into the fridge and collapse on the sofa and immediately sleep for 2-3 hours. Not just restricted to supermarkets but more concentrated there it seems. Now at worst, I just get the air-hunger, the strange overlapping yawns that are familiar to some of us here as a B12 deficiency indicator.
If the GP is doing the necessary EOD loading dose, it would be a good idea for her to monitor folate, ferritin, vitamin D too. Just to ensure that these are remaining at optimal levels and stable.
I will ask but won’t push it as she seemed a bit diffident about the whole thing and was initially going to do injections every other week. That was a scary moment! I think I will carry on with Medichecks for a while, every three months or so, and agree especially based on your experience that these need to be kept an eye on. But I’ll ask if the GP thinks these need to be monitored and for my daughter to supplement (since she was low) and see what she says. I don’t think ‘optimal’ as understood here, is in the GP lexis!
symptoms that she felt may not be solely to do with B12 deficiency: bleeding gums, hair loss.
My daughter has hair loss so this is interesting. It sounds like you had a good GP! My daughter currently has good folate at 70% through range, and Nackapan has suggested not to supplement for now. We’ll retest before she leaves for first year of university (all being well) in September.
Ferritin – her level is not terrible but not optimal and now I will look at increasing this as much as possible although food is a bit of a problem- she loves it but is picky these days because textures can gross her out. More sensory stuff.
As for the vitamin D, I was found to have osteoporosis of the spine, so get vitamin D and medication on precription. Now reduced to osteopenia, so I know it's all working ! That’s brilliant, I don’t know about osteopenia, but I hope your symptoms are relieved and it’s going in the right direction. I had to take massive doses of vit D (12.000 IU daily for three-four months) just to get to 80. Now on 106 and 5000 IU. My daughter has gone from sub 40 to 150 in a few months.
I’m hypo so a regular next door on TUK group. We are dealing with B12 and vits/mins first and will test thyroid again in September, she’s undiagnosed but I can’t rule it out as yet – I posted her thyroid results (no immune antibodies) in the group but can’t remember what was said as we’ve been embroiled in B12 ever since!
There is a "supermarket syndrome"
I did not realise about this – specifically B12 related? It’s exactly what my daughter has been describing for ages, although not in the very descriptive language you just used. This is so helpful.
Thank you for your reply and strategy for going forwards🌸.
I had supermarket syndrome primarily from adrenal insufficiency but to some extent also from B12D. I think it's good you're addressing nutrients/b12 before thyroid, I did it the other way around and it was a big mess.
Hair loss & bleeding gums can be from so many different things. I'd tend to think more iron or thyroid, but also lots of other possibilities.
Next time you do a medichecks, get the full iron panel. Ferritin can sometimes be low whereas iron is fine, and in those cases you absolutely do not want to supplement iron. If iron is low'ish, there are gentle low-dose irons you can take. I've forgotten the names but TUK will remember.
I was really big on food textures because as it turned out, I barely had any sense of taste/smell but I didn't realize it. I still have issues with texture and mixing foods on my plate/stomach.
But I think sneelde has also mentioned she is ADHD/Autistic (?) and that goes with the territory.
Yes possibly, at the moment she is on the waiting list for autism assessment and diagnosis, but she'll have almost finished her degree by the time she comes up for it...Not a picky eater as a child at all, embraced everything, again, everything has changed since puberty which Nackapan says is the case for her daughter too I think. I'm hoping against hope that some of her sensory traits might lessen in intensity with the optimal and useable B vit status. It's all so confusing!
Good if you can get as much sorted ax possible with your daughter before university. Also she gets 'on board ' more.
Getting on board yes she’s going to have to find out the hard way I think! She’s going about 2.5 hours away which is ok for me to drive in fits and starts if I need to. We also have family here who will charge down there if necessary, which is wonderful.
I get it, the cheap hotel and student accommodation – think I’ll end up in some at least once…
Not once given a b1e blood test.
Brain mri
Heart monitoring
This is what the paediatrician tested at times over the last 3-4 years. Absolutely USELESS. They sit there don’t they and you get to the end of the appointment and nothing has changed. It must have been awful for you (I think you said your daughter is 30 now?) having to find out things for yourself with even less information than we have now.
Supermarket syndrome not specifically/exclusively linked to B12 but a sufficient amount of people on this forum will recognise that overwhelming sensory overload. Constantly scanning shelves up/down/sideways can also cause dizziness. Taking all that in can be extremely draining. Did not know there was a name for it until I saw a programme on TV where a woman sufferer was getting help for it - although B12 not mentioned, I recognised the condition.
All of this, if caused by B12 deficiency, can be controlled by B12 injections but, for me, this took quite a while. Even with frequent injections, improvements were slow and this can be difficult to appreciate and quite disheatening. A daily symptoms chart/diary helped me to see that changes for the better were occurring and every time I got down about the pace, I'd look back at previous diary entries.
I still feel that I am improving, even now, and hoping for more. Lately, Pascoe appears to be making a positive difference.
Will be hoping for the same for your daughter. Only faster !
I agree with Nackapan. B complex should fine for now. EOD B12 might use up what's already there so no harm in a modest amount of f.a. You can always retest & tweak in a few months time. Especially given she was previously low.
I think Vit D is ok but go by thyroid group, i'm unfamiliar with the UK units.
Ferritin could be higher, but have you done a full iron panel yet?
Don't forget, things can get worse before they get better eg tingling/burning, energy, cognitive issues, etc. I slept for 3 straight after my 2nd loading dose & needed naps for months after.
Doesn't need saying but i'll say it anyway - let us know how it goes!
Good, she will get back on the B complex👍, and go back to Vit D in September as she has a very good level currently. Trying to give her a break from stuff and let her enjoy the summer.
Yes ferritin, I agree...The iron panel is from June and I don't understand it...the GP didn't mention iron at her last appointment, but I will ask at the appt on 31st July. If you or anyone else has any ideas, please let me know. Iron...so odd!
She does have a referral to Gynaecology for endometriosis (awful menstrual symptoms), don't know if iron plays into that.
While I'm writing this she has just come in (36 hours since first injection) and said she threw up last night with sharp stomach pain after eating chips (never happened before, she almost never throws up) and has had the sharp pain just now with fruit juice (unusual).
So I'm wondering if stomach issues (reactive, increased acid, anything?) have been a feature for you after starting injections, or if this is a known thing when B12 surges in for the first time?
Of course everyone is different and it may be something else entirely.
Good idea for new post, if she still has problems by the end of today I'll do that.
No she's not on any supplements, neither am I and my sat rate is higher than hers (GP says fine though). We cook a lot with a cast iron pot...?? Female hormones?
I don't know much about it but it could be early signs of haemochromatosis, a genetic condition that causes iron buildup in the body nhs.uk/conditions/haemochro...
Have you ever seen a hematologist?
After all my experiences, i prefer to go straight to a specialist these days.
We had some DNA tests done with Nordic a few years ago, and we're both negative for the HFE C282Y and H63D variations - mentioned under 'Iron Overload' in the test results (not pretending I know anything about the genetics!).
Neither of us has seen a hematologist, I can imagine you not wanting to bother with GPs, blimey.
It's the first iron test we've had so with everything else going on, I'm keeping it on the back burner for now, but do agree we seem highish, esp for not supplementing.
"She's also really unstable on her feet at times, always banging into things."
Proprioception Problems
You may want to do a bit of research on "proprioception B12 deficiency".
Problems with proprioception can be associated with b12 deficiency and folate deficiency.
Proprioception is awareness of where the body is in space.
If balance is worse when eyes are closed/ it's dark / view of surroundings is blocked then that is suggestive of possible problems with proprioception sense.
For example I used to fall off pavements if someone walked directly towards me and I lost sight of what was ahead of me.
If she has seen a neurologist, did the neurologist test her proprioception sense?
Two tests that neurologists may use to check proprioception are
1) a romberg test
2) walking heel to toe with eyes closed
These tests should only be done by doctors as there is risk of falling.
There are videos of proprioception tests on Youtube.
And make sure they understand the issues & do the right tests. The neurologist i went to did 1 single test - a knee reflex test - and declared i was fine. 🤦♀️ nevermind that i was stumbling around & it was my arms that were numb.
She's under a neurologist for migraine and unusual epileptic type episodes from a few years ago (B12D??). She injects monthly with one of the new CGRP treatments which has been absolutely incredible. Prior to that she had tried about four migraine treatments and when didn't respond was offered that. Nackapan will no doubt be nodding her head when I say - migraines started about a year after puberty, like so many other of her symptoms.
Girls should have baseline vit mineral thyroid bloods done when their periods start!?
So we know what the heck might be happening. If ill health develops. Blood-wise at least....
So...the initial private neurologist checked her out, I can't remember what he did but he took a few minutes and it was more than a tap on the knee, jade_s that's awful😬.
She's now under an NHS one who wanted to give her the CGRP but has seemed uninterested in anything else.
I know I put a list of everything together for him, but a feature of my daughter's symptoms all the way through is that they can be really subtle. Added to that, she is a massive stoic and underplays everything. Leaving me looking like the overanxious mother!
Both she and the doctors we have seen seem to forget that she has had to give up rowing, socialising, drop subjects at A level, repeat a year of A level, drop out of sixth form since Jan this year and take exam as private candidate, be ferried to and fro because of crushing fatigue, lie on the sofa for days at a time and and and....sorry the angst is coming out😃.
So. Thanks for the proprioception information, I will look at that. She is moving from Wales to England for university and I need to ask the neurologist about continuing treatment, so I will mention B12 then.
If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB asking which B12 deficiency guidelines are being used in the ICB's area and for a link to or copy of them.
It's vital that she gets adequate treatment for B12 deficiency.
Some forum members fidn their treatment for B12 deficiency gets stopped when they change areas.
Inadequate treatment may increase the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.
PAS article about SACD, sub acute combined degeneration of the spinal cord
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