Teenagers symptoms returning 4 weeks after B12 loading injections.

[Vicky2822]

My DD is 16 yrs old. She had 6 B12 loading injections over 2 weeks which completed about 4 weeks ago. Her blood test prior to this showed B12=166ng/L, folate 4.18ug/L and ferritin 14.2ug/l.

Prior to this she has had severe fatigue since she was 11. I thought it was due to a vestibular migraine condition which started at this time but I’m now thinking it may have been B12 deficiency all this time as I don’t think she has ever had her B12 checked before now.

After the injections she was less tired ( although still not normal) and the pains she suffers in her side, chest and constant back pain did go. Four weeks later and the severe tiredness is returning as are the pains she also feels light headed when she stands up. Har face has also broken out very badly with spots. She is also having a Jarrows B12 5000mg losenger each day and ferres sulphate 250mg twice a day. ( not prescribed by my gp)

Not sure what to do as dr doesn’t want her to have her next b12 until 12 weeks after the loading jabs. He is also doing another blood test at this point and said he might stop the injections and put her on tablets?

I fear we will be back to square one if we have to wait another 2 mtgs. I really thought this was the answer and I would get my daughter back to health.

Can anyone with more experience about this suggest what I can do to help her? She is doing her GCSEs in a few months so I really need to get her as well as I can before then. Poor thing even dropped out of a New Year’s Eve party tonight (had bought a new outfit) as she is too tired to go.

[MarsBarKid]

I maybe wrong but having been in similar position taking Iron in this form - I had to stop taking ferrous sulphate. Face broke out in nasty rash of spots etc - stopped immediately I stopped taking it.

Now I take Fab Iron Liquid in capsule form in water once a week and iron is Ok says GP on last blood test.

I think it must be available in UK as saw tablets on Amazon so on line chemists must stock it - link here for all types available in Oz.

carepharmaceuticals.com.au/... It has vitamins also included.

[clivealive Forum Support]

Hi Vicky2822 although your daughter's Folate was above the bottom of the range was she prescribed folic acid?

Do you know whether your daughter's symptoms had "stopped improving" when the loading doses finished. If not, it may be that the injections should have continued.

Make a list of your daughter's symptoms and present this to her doctor and ask him to treat you according to her symptoms and (perhaps) even re-start her on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible go with her so you can validate her neurological symptoms as the doctor is less likely to pooh pooh them in front of a witness.

A wiser person than I has commented on here previously:

B12 Side effects

The pimples/acne, is likely to be caused by microbes on your skin reacting to the additional B12 by producing substances that your skin is then reacting to. In theory this could be resolved by use of a good skin wash. You might have better luck talking to your pharmacist and seeing what they can recommend prior to your next maintenance shot - though there is always a chance that it was something that won't recur.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[fbirder]

If it were me I would stop the B12 tablets and swap the ferrous sulfate for something else.

If your daughter's B12 deficiency were caused by a lack of B12 in the diet (if she were vegetarian/vegan) then the tablets would do the job and she wouldn't need injections. Conversely, if her deficiency were due to an absorption problem then the tablets will be doing nothing and she will need the injections.

Either way, the doctor should be making a decision on whether or not to proceed with injections based on that criteria alone. Unless it is obviously due to a problem with diet then your daughter needs injections forever. There is no point in testing blood levels after injections as they will be high. As the British Committee on Standards in Haematology said in this paper - onlinelibrary.wiley.com/doi...

Maintenance treatment for patients presenting without

neurological deficit is with hydroxocobalamin 1000 lg i.m.

every 3 months. Those with initial neurological deficit should

receive hydroxocobalamin 1000 lg i.m. every 2 months. No

further testing for cobalamin levels is required.

Although the British National Formulary (BNF - your doc will have a copy) has now changed the '3 months' to ''2 or 3 months'.

As for the iron supplements. Iron sulfate is the hardest type of supplement to absorb, especially for those with Pernicious Anaemia (due to their low stomach acid). I would get iron fumarate or iron bisglycinate instead. 25 mg of the latter every other day is enough to keep my levels normal.

[Hidden]

I can only say how I reacted to my initial B12 injections. My reading was a little higher than your daughters but I was light headed, lost my balance easily, was so tired, shortness of breath ( awful), tinnitus hand tremor and numbness in toes and finger tips.

I self injected alternate days and after two weeks the hand tremor and tinnitus went. The shortness of breath eased but didn't go and fatigue was slightly improved. I certainly didn't feel the symptoms were improved enough to stop injecting and go straight to 3 monthly injections. I left 2 days between I he toons, then 3, etc.. After another 2 months I'd got to about one a month. I tried patches and sublinguals but they didn't seem to help, though the patches did initially before I s.i.

Has your daughter been tested for Pernicious Anaemia ? I still only go about 8 weeks between injections and even though I tested negative I suspect PA.

[Marz]

I have read that taking VitC with every iron dose can help absorption. Does your daughter like liver ? - eating 200 g once a week can raise levels. If she doesn't like liver - try liquidising after cooking it and pop into an ice-cube tray and freeze. You can then add to soups and sauces without anyone knowing. 😊

Hope your daughter soon feels better ..

[Auntyp62]

I felt the same a few weeks after my loading injections and the tiredness got worse even after more injections.........long story............after near

Year and loads of test the answer was to raise the folate as well. B12 and folate work together, one episode mine were balanced I was a lot better

[Vicky2822]

I don’t think it’s diet as although she doesn’t eat a wide variety of food she does eat spaghetti bolognese at least 3 times a week and likes roast beef and steak. She had veta test done in August as about once a week she would eat her dinner and within 30 mins it would have gone through her and out the other end (sorry if too much info). This said she was intolerant to all dairy, coco and orange. Since omitting these foods the frequency of her upsets has definitely gone down ( now around 2-3 a month).

I spoke to a retired GP who specialised in B12 deficiency. He told me to give her the b12 losengers as well plus iron supplement for 3 moths and folate for 1 moth ( which she has just finished).

What should I be asking her GP to do as there has been no testing to establish why her levels are low? Can the blood test establish a reason?

Also he said not to go back for 12 weeks but it’s only been 4 and she is nearly back to square one already. Her main symptoms other than the extreme tiredness are the left side pain, constant back ache and light headed when standing. Dr did say her stomach problems may be due to the B12 deficiency as well as it makes the gut sluggish. He wanted me to self inject her but I don’t feel confident enough to do that yet but realise I may have too if we dont get anywhere with her GP. Thanks for all your comments I really appreciate the advice I just want to get her back to being healthy again and able to enjoy life. If she carries on like she is I can’t she her being able to hold down a full time job or have any kind of career she is just too tired to cope.

[fbirder in reply to Vicky2822]

Ignore what that doctor says.

Low B12 does not 'make the gut sluggish'. Besides it sounds as if your daughter might appreciate a more sluggish gut.

Most causes of poor absorption of B12 will also cause other gut problems.

Go see your GP and ask to be treated according to this NHS protocol - hey.nhs.uk/wp/wp-content/up...

There isn't really a good way to determine the cause of poor absorption of B12. The Intrinsic Factor test for pernicious anaemia gives a false negative in half of all people with PA. So it cannot be used to rule it out.

Your daughter should also be tested for coeliac disease, have an HbA1c test for diabetes and have a full thyroid check. All can cause symptoms like a B12 deficiency.

Stop taking the ferrous sulfate. It only ever made me feel unwell.

[Vicky2822]

Thanks for all the advice. Her GP is on B12 jabs himself so I was hoping he would be a bit more understanding. But he was adamant she can’t have the next one till 12 weeks after the loading jabs have stopped.

[pollianna]

Bless her, its hard enough being 16 without all of this.

Take a look at Floridix iron formulation.

I was anaemic when pregnant and iron tablets made me soo unwell. I was advised to take this by a midwife as its gentle in the tummy and easily absorbed. I took it with no ill effects.

As for the skin issue, childs farm baby moisturiser is 98% natural and should help hydrate her skin without irritating.

Hope this helps

[Ryaan]

Sorry.....i haven’t read any of the other answers you got but.....

Does your daughter have a B12 absorbtion problem ? If she does then only the injections will help not tablets.

After the loading doses you need further treatment and if her symptoms have returned after 4 weeks then she needs more frequent injections.

She needs her next injection at least “before return of symptoms” so in this case that would be before 4 weeks.

She needs regular injections before 4 weeks but most doctors won’t agree so a lot of people buy injections online and self inject.

The injections are cheap and from a good German company and you can easily purchase without prescription if needed.

If her iron and Folate is low then it’s ok to take it but the dosage should be doctor or pharmacist recommended.

Low B12, Low Iron or Low Folate all cause fatigue if any one of them is low.

The breakouts on the face are very common after loading doses of B12 especially around the forehead area and do tend to get less over time. I had bad breakout for about 6 months but needed the injections so for that you can try something like Clearasil Ultra cream which you can buy or Duac cream which only doctor can prescribe. One item at a time.

These 2 products helped me quite a lot.

My fatigue got much better after about 3-4 weeks and I injected once every week because in the second week my symptoms used to come back.

Anyone on this site knows where to buy the injections from.

You can try your doctor but most don’t give you more than 1 injection in 8 weeks which won’t help you.

You need a nice and understanding doctor who may be willing to help otherwise most don’t because they don’t know much about B12.

Hope this helps.

Wishing your DD well.

[Vicky2822 in reply to Ryaan]

Thanks. They haven’t done any tests as to why she is deficient. Her diet is good and she eats red meat, greens and lots chickpeas and not much processed stuff so I assume it’s an absorption problem but not sure how they confirm this.

I think my mum was anemic as she was always drinking mackinson. I’m starting to think I might be too after looking into all this, I had just put my symptoms down too Age but just found some old blood tests from 2 yrs ago ( haven’t had one since) and in both my haemoglobin was low but never investigated. Do you know if it runs in families?

[Ryaan]

Can run in family, that’s always a possibility but the good news is it’s easily cured/treated.

There’s no definitive test, they do an IFA test and that is 50% reliable.

So that can give you a false positive or false negative.

Don’t worry too much like I said you might not find the cause but is easily treated, just takes a little time. Thousands of people in uk suffer from this.

I would recommend to keep a good diet and regular exercise helps greatly.