Vitamin D test results - feeling ropey, advice please?

Hi and apologies if this is quite long!

I've been trying to get hold of my endo for weeks for a phone consultation but that's not getting anywhere so I was hoping someone could give me a bit of advice on what to do with my vitamin D.

I was started on vitamin D3 50,000 IU for 6 days in early February by my endo (vitamin D was 19.56) and then was told to take 800IU daily.

After about 3 weeks I felt incredible, I was waking at 7am feeling alert and refreshed(!) and all my water weight was melting away. My aches and pains went and I had a real zest for life which I've never encountered before (I've been hypo from birth and only on meds for the last 10 years). I had to reduce my regular 2.75 grains armour to 2.25 as I was starting to get a bit hyper.

The last couple of weeks I've really gone downhill, I can't wake until mid morning, low mood, swelling, really weak arms, shin splints, restless legs, lethargy, and a complete CBA attitude (sorry!)

I don't feel hypo/poorly as such, I did try to increase my armour to 2.5 grains and got a bit restless and palpy.

I had bloods done 2 weeks ago,

TSH 0.01 (0.3-6)

T4 13.8 (7.5-21)

T3 5.7 (3.1-6.8)

serum vitamin D 51 (51+ adequate)

albumin serum 46 (35-50)

serum calcium 2.2 (2.2-2.6)

serum inorganic phosphate 0.65 (0.8-1.5)

serum alkaline phosphatase 86 (30-150)

Could anyone please give me their thoughts as to what to do with my vitamin D? I feel like I really need to increase now, I'm not seeing my endo for another 2 months and I really don't feel like I can put up with feeling this rubbish for that long! This is a new endo for me and I don't want them to think I'm going behind their back but if I can't get hold of them I don't have much other option than to take things into my own hands!

Thankyou in advance :)

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11 Replies

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  • I don't know what to advise re vitamin d but I can certainly empathise with you as I am also feeling all of the above .Mine has been going on for a few weeks as well . Hope you get some answers soon Mishka !

  • Thankyou, and I hope you do too. I think these vitamin D symptoms are worse than hypo ones!

  • I couldn't say why you felt great and now you don't, but I will say that 50ish is still considered quite low so you may see some improvement if you continue to take the pills. Good luck!

  • Hi Mishka, have you tried using magnesium?. Sometimes when you start supplementing with vit d it can reveal a magnesium deficiency, you also need calcium to absorb the vit d. Hope you feel well soon. X

  • You sound like I feel! I was put on Vitamin D. Think my reading was 25. I got a booster dose once a week for 12 weeks and then a maintenance dose like you of 800 IU daily. I was tested at the end of the booster doses and my reading had increased to 87. Think I saw somewhere that for thyroid problems it needs to be 90-100 so just thought it was near enough. However the aches etc are returning so I mentioned it to GP and I am having blood tests next Wednesday to check on this and the Folic level as I was put on Folic Acid at the same time but no idea whether I reached a good level with that. When I started on 800 IU daily that seemed rather low with what I was reading on here as a maintenance dose so was a bit suspicious at the time but we are all different and react differently but I think you should have a retest.

  • Thanks everyone. My knees are very painful this morning so I did do a cheeky increase in my dose! Magnesium and folic acid have never been mentioned to me so I will look into that, thank you.

    I do appreciate that everyone is very different, I seem to be quite resistant to meds and I end up taking huge doses of everything and even then they don't seem to really touch the sides. My GP told me I was 'too hardcore'. I'm not sure if that's a good thing or not..!

  • Keep up the cheeky increase on your Vitamin D! If you would like to see a powerpoint presentation I have prepared on this then please pm me and I'll gladly send it to you. :)

  • Thanks Barbara!

  • I was severely deficient in vitamin D (20.7), wasn't given a boosting dose to start, and am only taking 1600IU daily now. I very gradually started noticing that I was feeling better, with less pain in my joints, less "bone" pain (that's what it felt like, no idea if they can actually hurt), my muscles stopped twitching and cramping etc. However, 2 months later, all the symptoms seem to be returning and I feel pretty rubbish again. I am due a blood test at the end of this month, but the GP said that it was quite early to show up any improvement. I am sure I read somewhere that you can start to feel worse before you feel better with vitamin D supplements, I have no idea if that is true.

  • Hi BeansMummy, sorry I only just saw your message as I've been away. That's interesting about feeling worse before feeling better, I did a little increase a few days ago and I was feeling quite rubbish just afterwards but today I'm feeling much more perky (and I'm constantly running to the loo!) so I think my increase is kicking in now. I hope your blood test leads to an increase for you if that is what you need - good luck :)

  • VitD is fat soluble - so best consumed with a little....

    grassrootshealth.net

    vitamindcouncil.org

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