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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to ask your experience with Vitamin D treatment?

53 replies

RomeoBunny · 27/04/2018 22:12

I have felt like shit for about 12 years, even worse after DS was born a year ago, but weirdly good actually when I was pregnant. Was severely anaemic after due to blood loss (and surgery complications a few months later) and also was eventually suffering overall body pain to the extent I was crying every night and morning (I'm waiting for a rhumatology appointment to come through as I had raised inflammation markers and my gp suspected some form of '-algia' or possibly arthritis, but this may not be needed any more).

I went back to see my GP 3 weeks ago as I started getting the sensation of water being poured over the back of my legs and random spots along my arms and was terrified of a blot clot - or several. And suddenly I recognised a lot of the pain I'd had that week shooting across my back like lightning, as neuropathy pain, the same I had when I had a bad case of shingles when I was a teenager. As soon as I mentioned this she rapidly checked my notes.

Turns out they never checked my Vitamin D levels... ever. And my bloods taken that day showed they were through the floor.

I'm now on a loading dose of 40,000 weekly for 8 weeks and then for several months after. I have been feeling a lot better since a few days ago but have also noticed my appetite is just meh. Like I have gone from feeling like my throat is cut, constantly wanting to graze and craving everything to just now feeling that 'food is fuel'. Which I assume is the normal way to feel?? Confused I felt like this when I was pregnant because my hormones regulated I guess (had been haywire since I was a teenager before then and took us over a decade to get pregnant) but never apart from that since I was a kid.

Has anyone else found their Vitamin D treatment stabilised their appetite? Or made you lose yours? I'm not complaining, just worried it's a negative side effect or toxicity or something Sad

I haven't felt this 'normal', and not tired or in some degree of pain, well, ever I don't think so it's freaking me out and I don't want it to be a bad thing. I have enough bad things going on in my life right now and can do without accidentally making my life worse Grin

Shamelessly posting for traffic, because let's be honest, this is the busiest topic page Blush

OP posts:
endofthelinefinally · 27/04/2018 22:17

Vitamin D deficiency is very common and makes you feel really ill.
It is still not taken seriously enough by some GPs.
I have a debilitating neurological condition, but in addition my vitamin D levels were very low. I do feel a bit better since taking supplements.
It is my understanding that everyone in the northern hemisphere is likely to be deficient, especially in the winter months.

OnTheRise · 27/04/2018 22:20

I was deficient in both D and the B vitamins. I've started taking supplements and feel so much better. More energetic and far less achey.

Original poster
RomeoBunny · 27/04/2018 22:26

How has it affected your appetite?

OP posts:
tripletrouble · 27/04/2018 22:31

In the US, vitamin D levels are checked annually- I was found to have a deficiency, took some tablets, and felt noticeably better- not so tired, and fewer aches and pains.

Schroedingerscatagain · 27/04/2018 22:31

Personally I would be asking for a full vitamin screen

It’s highly likely you have other deficiencies like folate B12 etc which may also need correcting

I’ve been on vit d now for 9 years, 7 years ago they found I also had their deficiencies and eventually I was diagnosed as a coeliac

It’s quite common to find other deficiencies after the first one and they then need to work out why?

As for appetite, I’ve never had a big one but it did improve after my pernicious anaemia and coeliac disease we’re diagnosed

endofthelinefinally · 27/04/2018 22:32

I am on too many other meds that increase my appetite to comment on the vitamin D effect, so can't help there I am afraid.

purpleorchidwhite · 27/04/2018 22:38

Yes, I found my appetite decreased/ stabilised. My energy levels returned. My levels were 18? I think they should be 75+ for functional levels.

It took a long time to really feel the full effect, but even now if I miss a few days top up I start to feel tired.

Idontdowindows · 27/04/2018 22:41

My vitamin D levels were through the floor as well and I now take a daily 5000ie pill. Even with those I'm still only somewhere in the middle of normal.

I've been taking them every day for the last 3 years now and the difference in energy levels and appetite is mad.

Lotsalotsagiggles · 27/04/2018 22:43

I use the 30,000 spray and do two sprays a day

It helps much more than the tablets as is instant. Used it every day and feel like a different person

LordBuckley · 27/04/2018 22:50

I've been taking the 10,000 drops for 3 years; my levels were extremely low, and they're now back to normal.

I wasn't having any particular noticeable symptoms before I started the supplement, but I do have borderline osteoporosis (osteopenia), which is why I was originally tested.

I had difficulty starting the supplement because it gave me bad headaches and nausea. I was supposed to take a high dose once a month, but as I couldn't tolerate that, it was changed to four drops a day.

I was still getting nausea, so I reduced it to 1 drop a day, then gradually worked up to 4, and it was fine after that.

I haven't noticed any particular increase in appetite, but I have plenty of energy (walking several km a day, aged 70), and I've actually lost a bit of weight recently (not that I was overweight).

Nichelette · 27/04/2018 22:56

I'm on half the dose you are. No noticeable appetite change but I ache so much less (was getting pretty bad). I hope it helps you too!

bonzo77 · 27/04/2018 23:02

My levels were a bit low (ditto for iron). GP has given the 40,000 u per week thing too for 7 weeks. I’m 4 weeks in and feeling much better. But my appetite has gone crazy. Admittedly the iron I think has set off my gastritis, which is really helped by grazing on dry carbs, so might be related....

Original poster
RomeoBunny · 27/04/2018 23:12

@bonzo77 I have post colcholestomy (or whatever it's called) syndrome after having my gallbladder out and too much acid being produced in my stomach now, which had started an ulcer Shock so I'm on one lansoprazole tablet every day now too. Don't they give you anything for the gastritis?

OP posts:
Original poster
RomeoBunny · 27/04/2018 23:15

@nichelette it was so nice waking up a few days ago and realising I could just get up and it wasn't agony anymore. I was on the verge of a total meltdown over it.

OP posts:
Original poster
RomeoBunny · 27/04/2018 23:20

@purpleorchidwhite I think she said mine were 12 Blush I'll have to ask at my follow-up.

@Schroedingerscatagain they're checking me for IBS now amongst several things as my Coeliac test came back negative apparently. Also being sent for a spinal MRI to make sure the nerve/sensation thing isn't something else entirely. Fingers crossed it's the vitamin D.

OP posts:
Noboozeforme · 27/04/2018 23:29

My vit D was very low and the GP pit me on 20,000 a day for 8 weeks. I'm now taking 1,000 a day.

I don't feel any different on it tbh although I'm no longer getting home from work and sleeping for an hour !

Marmelised · 28/04/2018 03:49

I’m currently on the 20000 twice a week for 8 weeks and, now you mention it, have noticed a difference In appetite.

Whilst on the subject I wonder if anyone also noticed a change in sleep pattern"?

The posting time probably gives a clue as to why I’m asking.

I usually average about 6 1/2 hours a night (according to my Fitbit) and since starting the supplement last week this has gone way down, with long periods of wakefulness leaving me with less than 5 hours sleep some nights.

It could be to do with work pressure but interesting to know if anyone has had similar when taking high dose vitamin d supplements.

bonzo77 · 28/04/2018 07:23

@RomeoBunny I’m on lansoprazole 2x a day + ranitidine + gaviscon! Total pain.

maxthemartian · 28/04/2018 08:08

Do you all keep taking the supplements in the summer months as well or just through winter?

Idontdowindows · 28/04/2018 08:32

I take all year round.

LordBuckley · 28/04/2018 12:10

Mine was prescribed by a doctor, and has to be taken all year round.

barcodescanner · 28/04/2018 15:26

I'm taking 20,000 a day as well as vitamin K and Magnesium. K moves the calcium to your bones and teeth and mag keeps it there.

lubeybooby · 28/04/2018 15:34

I was vit d deficient and the superdosing schedule and getting my levels up has changed my life. I highly recommend getting them way up above the minimum to at least 100. Mine is 150 now and I feel amazing and am never ill

I keep taking a normal level of supplement now my levels are up as I use lots of factor 50 suncream even when it isn't sunny (hate the ageing effects of sun)

Andylion · 28/04/2018 15:50

I recall reading somewhere, likely here, on MN, that Vitamin D helps reduce psoriasis outbreaks. Does anyone have any experience with this?

Pattylogic · 28/04/2018 15:56

Where do you get the super level vitamins from please?

I’ve just been told that my vit d levels are 34 but was advised by my dr to just take the ones available from Boots etc.

With a fairly low level like mine, I thought I’d be started on industrial ones!

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