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VitD deficiency - low dose prescribed

(30 Posts)
tobebebebe Mon 18-Nov-19 15:22:55

Hi, wondered if someone could advise. I had a range of blood tests taken (mainly feeling tired all the time) my vitamin D came back as deficient as you can see -

Serum total 25-OH vit D level 23.000 nmol/L- nmol/L

Gp prescribed 5300iu d3 liquid capsules to be taken 3x a week. This doesn't seem like much for the amount I am deficient. I'm tempted to just take them daily.

Any advice?

OP’s posts: |
GrumpyHoonMain Mon 18-Nov-19 15:25:38

Mine was 5 and I was prescribed the equivalent of 5,000 per day. When it still didn’t improve they reviewed other possible causes of it (or rather will- am pregnant so the tests they want to do will need to wait). You should follow the GP’s advice as they are likely going to investigate further if this treatment option doesn’t work

Lellochip Mon 18-Nov-19 15:38:06

They should be fine to take daily, I take 10000ui to raise my levels. I also take magnesium and k2 which are recommended to take with high dose vitD. If you Google vitamin D protocol there's information on figuring out ideal doses etc

Mumma1984 Mon 18-Nov-19 15:43:45

Mine came back at 43 and doc prescribed 1000 one per day but I'm taking 3000 spray from Holland and barratt - I'm being retested In 2 months smile

tobebebebe Mon 18-Nov-19 15:46:32

Thanks everyone. I'm going to take the prescribed ones daily and see how that goes. Feel worse than ever today after my first dose on Saturday.

OP’s posts: |
Bettertobehealthy Mon 18-Nov-19 17:41:19

Hi @tobebebebe ,
Yes, that is a very low vitamin D level, around where, if you were a child , you might have rickets. As an adult , you would not experience bone deformation , but possibly a condition known as osteomalacia - depending upon your other nutrition. Generalised aches and pains , fatigue, susceptibility to infection , etc etc.

I see you have decided to stick with your prescription , but , I wondered if you might be interested in the experience of many other people , with the same low levels, what were the causes , what they took, how it affected them , etc.

ANYWAY , here are a couple of threads , which will give you lots of information . It will be useful for you to know , as you progress. I did post quite a bit on those threads.

www.mumsnet.com/Talk/general_health/3176404-Could-I-be-on-the-wrong-dosage-for-Vit-D-deficiency

AND

www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed

Best of luck,
long reads , but useful. if you want any more information , just get back to me. . I have posted quite a bit about VitD here on Mumsnet. Just search my nick.. !

BTBH.
.

tobebebebe Mon 18-Nov-19 19:43:02

@Bettertobehealthy Thank you for this, i've had a good read and the threads are incredibly helpful.

I've been reading about Vit D deficiency all day and have now got myself worked up and convinced that I've got pernicious anemia.

It would go hand in hand with the deficiency, plus I recently had blood tests that showed very high thyroid peroxidase antibodies - suggesting an autoimmune response. I've also noticed that on all my blood tests my Mean corpuscular volume (MCV), my Mean corpusc. haemoglobin(MCH) and my Mean corpusc. Hb. conc. (MCHC) were all very low, but my ferritin was 111.

Another thing, I have a very yellow skin tone - me and my husband always joke about it, but with normal ferritin levels I have never considered anemia.

Not sure if thats something you know about, can advise about or if I'm being crazy and have perhaps worked myself up. I just know I feel terrible and have done for as long as I can remember.

OP’s posts: |
Lellochip Mon 18-Nov-19 20:06:02

Do you have your full blood results, did they test your B12?

tobebebebe Mon 18-Nov-19 21:53:16

Hi @Lellochip, my b12 test is processing at the moment. I have had full blood test see pics attached.

OP’s posts: |
tobebebebe Mon 18-Nov-19 21:53:53

And one more

OP’s posts: |
SirTobyBelch Mon 18-Nov-19 22:05:33

I've also noticed that on all my blood tests my Mean corpuscular volume (MCV), my Mean corpusc. haemoglobin(MCH) and my Mean corpusc. Hb. conc. (MCHC) were all very low

If you had pernicious anaemia your MCV would be high; your MCH would probably be high, too. Megaloblastic anaemias are characterized by abnormally large, dysfunctional red blood cells.

Lellochip Mon 18-Nov-19 22:17:42

Low vitamin D on its own can make you feel lousy, and most of us will be deficient to some point because we don't get enough sun. So wouldn't worry about pernicious anaemia yet unless B12 comes back low. Folate is another common suspect for fatigue, they may or may not have tested that with the B12. But if it's just tiredness it could simply be the low D, are there other symptoms?

tobebebebe Tue 19-Nov-19 09:15:05

Thanks for that @SirTobyBelch , that sort of puts my mind at ease a little.

@Lellochip whole host of symptoms, main ones - tiredness, monthly migraines, freezing cold all the time, very irregular periods, hot sweats at night, emotions all over the place and anxiety through the roof.

Originally GP suspected early menopause, ruled that out from hormone testing, then thought a thyroid issue but my levels seem low but ok (apart from thyroid peroxidase antibodies are high, which could point to issues in the future, or could be nothing apparently) so I asked for my vitamin D and B12 to be tested - she reluctantly agreed and said I would have severe body aches if I had low D, which I don't - but there it is very low vitamin D levels.

OP’s posts: |
tobebebebe Tue 19-Nov-19 09:16:56

These were my thyroid test results if you're interested -

Thyroid Hormones
TSH 1.76 mIU/L (Range: 0.27 - 4.2)
Free T3 4.16 pmol/L (Range: 3.1 - 6.8)
Free Thyroxine 14.900 pmol/L (Range: 12 - 22)

Autoimmunity
Thyroglobulin Antibodies 24.100 kIU/L (Range: < 115)
Thyroid Peroxidase Antibodies X 88.8 kIU/L (Range: < 34)

OP’s posts: |
EllenRipley Tue 19-Nov-19 09:39:29

Your vitaminD is extremely low! I'd advise joining a Facebook group called Vitamin D& co factors UK. They have a very good protocol for raising your levels, based on good science and current research. You need to ensure you take adequate magnesium to prevent D supplementation from depositing calcium where it shouldn't go, as well as Vitamin K2mk7. They also advise boron. The co factors make supplementation safe and more efficient. You can get some unpleasant side effects from high doses (though 5000iu isn't massively high) especially if you're not using magnesium.

There's also group members who can advise on B12.

tobebebebe Tue 19-Nov-19 09:53:58

@EllenRipley Thank you. I have requested to join the group as well as some others.

So far all I feel is terrible anxiety.

OP’s posts: |
Mumma1984 Tue 19-Nov-19 09:58:36

If mine is 43, with the below is yours 25? I find it so confusing!

Serum total 25-OH vit D level 23.000 nmol/L- nmol/L

EllenRipley Tue 19-Nov-19 10:03:20

I think that's quite common, to feel worse at first. You're very deficient so your body will be working hard to balance itself. Magnesium & cofactors should help. If your B12 is also sub par you will be feeling pretty crap too. Did you get figures for your ferritin levels? NHS normal ranges are far too broad, and you can get anaemic symptoms at around 30 and below (I know I do). Ideally should be around 70-80 I think.

Hang in there. The group is very supportive and you'll find loads of folk who've been in the same boat. It's probably going to take a wee bit of time to undo the deficiency symptoms. X

Joerev Tue 19-Nov-19 10:10:30

I wouldn’t take it everyday.

You need to follow the go advice. Mine was even lower than yours and I took a huge dose once a week

EllenRipley Tue 19-Nov-19 10:20:40

Just re-read your initial post, you're taking 5300 3 times a week? That's not enough. Provided you're taking adequate cofactors, at least 5000iu per day is required. You could go up to 10,000iu safely, with levels like yours. Follow the protocol in the FBgroup, it's safe and effective x

tobebebebe Tue 19-Nov-19 10:51:27

@EllenRipley Thanks so much for your help.

I was prescribed 5300 3x a week yes, but after a bit of research I could see that it isn't enough so instead I have been taking them daily.

My ferritin levels are oddly high: 111.

OP’s posts: |
Zippetydoodahzippetyay Tue 19-Nov-19 14:47:03

Just for comparison, I have been advised by my Dr to double my vitamin D supplement to 2000iu daily. I was taking 1000iu daily all through the Aussie winter and was still low, though not deficient.

tobebebebe Tue 19-Nov-19 15:48:28

@Zippetydoodahzippetyay Interesting, seems that GP's don't really have much knowledge of vitamin deficiencies.

I'm gonna go with 5300iu daily along with 500mg K2 and 600mg magnesium and see how I go.

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tobebebebe Tue 19-Nov-19 15:49:44

@Mumma1984 No my level is 23, the 25-OH bit is something else...

OP’s posts: |
SirTobyBelch Tue 19-Nov-19 17:38:56

The 25-OH bit refers to 25-hydroxy vitamin D. The level in tobebebebe's results is 23.0 nmol/L (not sure why they're reporting in to 3 decimal places, given that it's been rounded to the nearest whole number).

Vitamin D3 is synthesised in your skin by the action of UV light on 7-dehydrocholesterol. This undergoes enzymatic hydroxylation in your liver to produce 25-hydroxy vitamin D3 (calcidiol) and then in your kidneys to produce 1,25-dihydroxy vitamin D3 (calcitriol). Calcitriol is the active hormone. Calcidiol concentrations in the blood are more stable, so this is the form that's measured in the lab test.

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