Low in Vit D and B12

[Tulipvase]

Hi

Apparently I’m low in Vit B12 and Vit D. I’m not sure of the measurement as I wasn’t given that by the figures were 118 for B12 and 30 for Vit D.

I have a repeat blood test next week and a telephone appointment so can obviously ask questions then but I’m impatient.

Any idea what they might do?

At that level, you should ask for b12 injections. An oral vitamin D supplement should be fine, but b12 is very difficult to improve with a supplement. You usually get a loading dose (this may be an injection every other day for a couple of weeks - I don't know for sure) and then injections every 3 months. My practice nurse told me that the injections are for life.

However, I do know that some GPs do not provide b12 injections easily, so people occasionally buy it to self inject. Hopefully someone more knowledgeable about this will be along soon.

I'd start taking the Vit D spray - the stronger D-Lux one. It's very effective. And Vit B complex capsules or tablets with magnesium which I think helps the body to absorb it. I am also deficient in both (and iron, so check this too) and find that when I take them, my energy and mood improve quickly.

Thank you @DaisyThistle @Rovinonmars

My tests were initially due to me thinking I might be menopausal but I guess these results could explain the way I have been feeling. I’ll look into those suggestions.

I’m halfway through my b12 loading dose injections having had a similar number reading to you. I’m exhausted! Hoping I soon see results but I guess my body has to use the b12 to make decent red blood cells - think the results can vary in terms of timelines.

Hope you soon get your treatment mapped out.

i can’t say I’m looking forward if that many visits to the GP… I thought they had stopped doing injections? May be that was a covid thing.

I hope you start to feel the benefit soon. Did they say why you are deficient? I’m assuming pernicious anemia?

I have b12 deficiency and had loading doses then was put on every 12 weeks after that I complained that I still didnt feel well so they shortened them to every 10 and then every 8 but would budge on any shorter than that.

Three years down the line I was almost bedridden and unable to work. I found an amazing group on facebook that provided support and knowledge called Pernicious anemia/ b12 deficiency - support group. The group have honestly saved my life..!!!

They have provided links and advice for how to manage treatment. I sourced my own b12 and cofactors that need to be taken and started self injecting every other day which is what should be done if neurological symptoms are present until symptoms are no longer improving.

Just to make a note that the doctor should not test your B12 after you have started on injections because it will always test high from injections so it is pointless.

Also make sure you are supplementing Methyl Folate or folic acid with your b12. It works interdependently with b12 so if your folate is not at a good level the b12 will just be going to waste.

Thank you, that sounds awful. Well done for sorting it all out, not that you should have to.

I’m not sure if the repeat test is to confirm the findings or to try and establish the cause but hopefully I’ll know more next week.

@Tulipvase I know it was very frustrating but then I discovered that I wasnt on my own in this and many other people are going through or have gone through the same difficulty.can you access your results on the NHS app? You can view all your test results on there and it gives you a bracket next to each result of the range that you should generally fall within for it to be sufficient.

I have signed up for the App and can see certain info but not my results. I’ll ask when I go next week. I don’t feel as if I can keep bothering the GP but I would like to know if the 118 is nmol or pmol - one is really quite low and the other the lower end of normal.

Did you click in "view your GP health record" and "test results"? They should all be in there.

118 in very low for b12. Do you have meat and dairy in your diet?

Also 30 for your Vitamin D is deficient, that should be above 50. Most people are deficient in the UK. I have an oral spray for vitamin D which seems to do the job :)

In that section it just shows previous meds I have had and allergies. Nothing about tests, it does say about asking about detailed coded access to see further details, so I’ll ask next week.

I eat a pretty normal diet I think! Could prob eat more veg though but I do eat meat and dairy. I’m a bit surprised about the Vit D as I spend quite a lot of time outdoors due to my job. I’ll look into the spray, thanks.

There are medications that can cause B12 deficiency. Metformin (diabetes) and Proton Pump Inhibitors (reflux, heartburn) are known to do this. And occasionally we just experience changes to the stomach lining as we age that make it difficult to absorb B12 thru diet or supplements.

I do have Pernicious Anemia and was diagnosed when my B12 was nearly twice what yours is (but I had no symptoms whatsoever). It might be worth having the blood test that checks for Intrinsic Factor Antibodies to confirm if you have PA or are simply B12 deficient. You'll need to test before supplementing though as supplements can skew the antibody blood test.

With PA you'll be stuck on injections for life. I'm in the US and typically the doctor orders a prescription for monthly B12 that you inject yourself. I didn't do loading doses as I had no symptoms and felt fine. TBH, I notice nothing with the injections other than feeling a bit jumpy and anxious for about 48 hours (and they disrupt my sleep for a night or two). Not a big deal.

Is 30 really that low for Vitamin D? I know different labs have different ranges, but I thought that was pretty typical/normal.

I’m not on any meds, must just be one of those things. I have a blood test next week, I assume that might look at the intrinsic factor? I’ll ask when I have it done.

I’ve checked my local NHS trust and 180 is lowest in normal range so 118 is quite low. The Vit D range is from 50, apparently 30-50 is considered deficient and below 30 is severely deficient.

When I had low B12 I was told to take tablets for a month, then did another blood test before they started me on the injections. After the loading phase they tested for pernicious anaemia which came back negative so I just had injections every 12 weeks for a year. I took tablets alongside the jags and still take them now.

It took a while for me to feel better even with the injections.

Did they fine the cause of your deficiency? Do you feel ok now?

I can't advise on B12 but my understanding is that many people would benefit from vitD supplements especially in the winter when there isn't much sunshine (not that there's been much sunshine in the UK this summer either!)

There was a lot of research lately especially during the pandemic that VitD boosts the immunity.

I have broken both my arms in the past 2 years and started taking VitD and calcium. I have since been diagnosed with osteopenia, which means some bone density loss but not enough for a diagnosis of osteoporosis. The orthopaedics team, GP and physio are aware and have said that especially given the osteopenia diagnosis that this should help, though I've not had levels actually checked.

@Tulipvase No never found the cause! I was told they wouldn’t even look into it unless I had PA. I ate meat and dairy so it wasn’t that. I have always had low ferritin and bad periods so not sure if there is a connection there? I was VERY into health and fitness for a long time and had been burning the candle at both ends so suspect it was just from not taking care of myself properly.

I am 4 years on and feel like a whole new woman! When I look back I can’t believe how bad I felt and for so long.

I have a blood test next week, I assume that might look at the intrinsic factor

I would specifically ask for the test. If it's positive for PA you'll know the cause of your B12 deficiency and there should be no issues with getting proper treatment. Oral supplements are generally ineffective in PA patients so injections are the preferred treatment. PA is a lifetime condition but most people who receive proper treatment do just fine. I've never had any symptoms but take the monthly injections to avoid developing them. Doesn't impact my life in any way tbh. Good luck!

Thanks. Yes, currently on nhs, God Bless it! Fortunately I run my own business so the appointments are not in the way of work. They’re testing for PA.
I’m mainlining marmite and other supplements and will check for the things other posters have mentioned to take alongside the treatment.

Iv just had blood tests back and I have low B12 and low folate. I forgot to ask the number though!

Iv been told I have to have 3 injections a week for 2 weeks and then an injection once every 12 weeks for the rest of my life.

I also have to start taking folate and iron pills after I had my first injection of B12 and I have to take these for 4 months.

Iv also had to do inflammatory blood tests for something and a stool sample to see why everything is so low. 🤷🏼‍♀️

I need to also make the request to my doctors to fully open my record so I can see the results.

Doctor said I had anaemia but never told me which type… I didn’t realise there was more then one.

@Tulipvase let us know what you get back please.

@Neonyellowfish really happy you have had such thorough support by your doctor and the correct advice with taking the folic acid and iron. Folic acid works with b12 so they are interdependent. Hope you start to feel better soon but if you have neurological symptoms present you should have every other day injections until no further improvement. Do you have any neurological symptoms..?

Hi

Just been for a repeat test, they are checking the intrinsic factor. Have been given a prescription for 800 unit vit D for 6 months initially.

I have now got a copy of my blood test and some of the figures relating to red blood cells etc seem at the higher end of normal……

@Tulipvase be careful not to be pushed back on the basis on the IF test. As many has 50% of people test negative. You may want to also ask for a Parietal antibodies test as 90% of people who have PA test positive for that.

Your red blood cells will be high because the uptake will be low when your b12 is low.

Join the support group on Facebook called Pernicious Anemia/B12 deficiency - support group. They are so helpful and knowledgeable, I wouldn't be as well as I am now without them.

Thank you - I hoping to hear tomorrow or Wednesday. I’ll ask about the other test too.