Daughter still struggling.: Hi everyone... - Pernicious Anaemi...

Pernicious Anaemia Society

23,259 members16,354 posts

Daughter still struggling.


Hi everyone.

After many months of my daughter struggling with exhaustion, it doesn't matter if she sleeps for hours, she can get up, go straight back to bed & sleep for hours again, feeling very low, teary etc.

I decided to go to dr's with her to get her last test results as she's really struggling with college now & having time off.

The result showed her Vitamin D was

32 nmol/L,

range 50-144.

Dr prescribed these tablets then said get a multivitamin over the counter after finishing the script.

Her serum B12 was 288 ng/L

range 197-771 so have said to monitor it.

I know with B12 you can feel worse before you get better & we're all different, but she now feels much worse & worried about college. Does Vit D work the same as in can feel worse before better?

17 Replies

Vitamin D takes time to be built up to levels thar should make a difference to your daughter. 6onmol/l + if I remember rightly. The loading doses she has take several weeks.

Does she absorb B12 tablets? Also has she been tested for other vitamins and conditions. Iron ect

Does she eat well ? A good structure of getting uo the same time eating at the same times short walks. All things that help until a cause is found. Its truly awful to see your daughter struggle. Hope something changes soon for her.

Ritchie1268 in reply to Nackapan

Thank you Nackapan.

She eats plenty of meat & dairy products & goes running when she is able.

When I checked her results all I noticed was the Vit D was low & her B12 was slightly low but, within that particular range which I told the Dr could still be low & causing issues.

She actually said she agreed but would treat the D firstly.

I nearly bought her some B12 tablets last night but changed my mind due to Dr saying to go back if she didn't feel better in a month, I didn't want to skew the tests if she doesn't feel any better as if she does go back, I'll insist they check her B12 again & see if it has dropped.

Thank you.

i got my d3 levels up to >250 nmol/L and i'm still tired,looking at iron levels now,put iron in the search bar and read older comments on here,very interesting[to me anyway!]

Thank you flosslechops.

Her Iron was at top end of the range.

sorry,thought your daughter was having the b12 injections,my b12 level was 404[190=910]last april,and i was allowed to have the loading doses because of symptoms rather than the result,and generally i have responded well to it,probably i am expecting a little too much too soon!hope your daughter gets answers soon

That's ok & thank you.

I've heard of dr's that treat the symptoms rather than the results, sadly though they are very few.

Thanks again.

Hello im Yvonne caffrey go on the pernicious anaemia site, the law states that your daughter can have her b12 shot every 10 weeks. Instead of every 12 weeks It helps to have an orange a day and sunny D a small glass a day. Eating beef also helps. Look the diet up that is how I know about the food. My levels are now normal. I still have to have the shots. I have a lot more energy I used to sleep all the time. I don't any more.

Ritchie1268 in reply to pink11

Hi Yvonne.

She eats a lot of meat & dairy products.

They won't give her B12 shots (yet) as they say they're in range, even if it's on low side of that particular range.

I will go back with her to Dr if she doesn't improve in next week or so.

Thank you

If your daughter has been low in vitamin b12 and vitamin D, then she could have an array of other nutritional deficiencies. I would look into improving her gut health and see if she is low in anything else.

Supplements that help fatigue are ones that support the thyroid (selenium, iodine etc). Ubiquinol, carnitine, magnesium and D ribose also help create energy (ATP).

In addition, magnesium is required for the activation of vitamin D. Therefore, a deficiency in magnesium could hamper this process. ( see link below)

Chronic infections, stress, toxins and some pharmaceutical drugs deplete the body of nutrients and impair gut health. I would look into the functional medicine approach to these things.

Ps if she has hashimotos then she may not be able to take iodine. Drs disagree on this. Some say its fine if you take selenium to protect the thyroid. I would research this. If she has kidney issues then she may not be able to take magnesium. Better to consult with a functional dr or get nhs tests to rule out any of these issues.




Dr sarah myhills books on mitochondria and the infection game. Also her website and youtube videos.

Dr mark hymans website.

Dr Datis kharrazians brain book.

Drug muggers by pharmacist suzie cohen

Good luck

That's great & thank you for all the information.

No problem. In addition, If your daughter has deficiencies due to poor gut health, make sure nothing is irritating her gut like food allergies. Common food allergies are dairy, gluten etc. I hope the info helps your daughter.

Thank you

CherylclaireForum Support

Have folate and ferritin serum levels also been checked ?

A lot of us have low levels of these along with B12 deficiency.

I was advised to get folate and ferritin, which were consistently low-range, into the top 1/3 of ranges to optimise B12 replacement, and it seemed to work well.

Takes a long time with some vitamins- which is why they don't test frequently and why they tend to give 3-month courses of tablets.

I now have just vitamin D tablets and buy a good daily all-round multivitamin and mineral tablet. Although I was also taking additional folic acid for a year (so altogether twice the average daily requirement) I no longer need to as levels are now high -and my hair is not falling out or gums bleeding.

Folate and ferritin need monitoring because it is possible to have side effects from too much in your system - unlike B12, where the body gets rid of what is not required.

Not sure if vitamin D gets worse before better - or just takes a while. Mine are prescribed because of osteoporosis of the spine.

I really hope your daughter sees improvement soon. Take care.

Hi Cherylclaire & thank you.

Her Folate level is quite high now as she was prescribed Folic acid tablets last time & I said I wasn't happy about that as she wasn't even low! This could obviously make symptoms worse.

When I was diagnosed I was told my Folate was virtually zero.

I'm not going to let this go until I get her the help so thank you. I appreciate your comments.


CherylclaireForum Support

You're right about the folate, Ritchie. Let's hope you get to the bottom of this.

So difficult to work it out alone, and it takes so long to discover whether you are right or wrong in self-treatment. Luckily your daughter has you in her corner !

I have heard that too much folate can cause symptoms similar to B12 deficiency - just to complicate matters.

Blood tests can help, but only a series of same blood tests will let you know direction of travel - toward or away from deficiency - and that takes time and an involved GP.

You're so right Cherylclaire, it's the length of time & seeing her suffering that gets me. I'm so tempted to get one of my ampoules & give her a B12 injection just to see if it helps her, but I just can't bring myself to do it.

There was a post somewhere where someone said they felt terrible & their B12 was over 300 mpol. I think it was Gambit62 that replied saying no wonder they felt terrible with that level, (I'll apologise if I've got this mixed up!) I did the conversion & my daughter's B12 level comes in at 212 mpol, so got me thinking she is definitely deficient in both B12 & D.

I've tried to find the post to confirm but can't remember who posted it.

Thanks again.

I haven’t read any of your replies but Vit D doesn’t work like getting worse before better. To be honest your doctor should have first given Invita D3 25,000, 12 ampules minimum for 6 weeks.(2 ampules per week taken orally). Then should either be tested or doctor can put her on a maintenance dose.

With B12 it can be worse before better depending on your symptoms, but if she’s low on B12 and her diet is good then she can have an absorption problem with which she will need injections and oral B12 will only show up high in blood tests but body won’t be absorbing so I would keep off oral B12 until a further blood test maybe in about 3 months time to see if diet is not raising the B12.

The other things to get checked are Folate which can cause these symptoms and Iron.

Thyroid and Diabetes check.

Also she can have full vitamins and nutrients test if she’s going to be tested for Folate, Iron etc as it just makes sense since she’s going to have a blood test anyway.

I think most likely if Folate, Iron is at good levels, the Vit D will get sorted as she’s being treated but B12 seems to be the main culprit.

It’s very hard to confirm why B12 is not being absorbed as there’s no real confirmation test.

So if diet doesn’t raise the B12 then that would be the most likely cause and injections would be needed.

Some gut diseases can cause absorption problems such as chrons and celiacs disease if you have their symptoms which can be checked for.

Don’t worry if it’s the B12, a lot of people are on B12 injections and it’s easily treated.

In the meantime a good diet and a good multivitamin will do her good.

She can take stimulants such as Korean Ginseng 500mg from Holland and Barrett’s as it tackles fatigue but I would get some advice before taking that or you can try it if you don’t have any other medical condition or not taking any medication, as Ginseng is quite fast acting but do get some medical advice if you do decide to take it.

I hope your daughter gets well soon.

Hope this helps.

You may also like...