Losing hope with vitamin D : Hi all, I've been... - Thyroid UK

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Losing hope with vitamin D

TMartin06 profile image
18 Replies

Hi all,

I've been having issues with extreme tiredness and joint pain for a long time but decided to get it checked out about 8 months ago

The only consistent thing that's been picked up in every blood test is that my vitamin D is low!

I was taking high dose vitamin D for 3 months and the level changed from 40 to 43, another 3 months on 1000 IU a day over summer went up to 48.

The past couple months I've been on 2000 IU daily, found out today my level is now at 34!

The doctors can't do anything (ie refer me to a rheumatologist) until my vitamin D is sorted but I just feel like that's never going to happen :(

Has anyone else ever been in this situation? I'm so tired of trying to get this sorted now with no results!

Tara

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bantam12 profile image
bantam12

Have you had your calcium tested ? The body tries to keep VitD low as a protective measure if calcium is to high, if calcium is high you need a parathyroid test.

TMartin06 profile image
TMartin06 in reply to bantam12

I've definitely had it tested before, but not sure about this time. The Dr did say everything else came out 'within range' but I can ask for my results and see if it was checked this time. Thanks!

SeasideSusie profile image
SeasideSusieRemembering

TMartin06

Presumably the unit of measurement is nmol/L? Please correct me if I'm wrong.

Is your Vit D supplement prescribed or self sourced?

Which supplement is it and is it a tablet, capsule, oil based softgel or oral spray?

I was taking high dose vitamin D for 3 months and the level changed from 40 to 43

Who suggested the dose you should take?

What was the actual dose?

another 3 months on 1000 IU a day over summer went up to 48.

Was this an increase or decrease in dose?

The past couple months I've been on 2000 IU daily, found out today my level is now at 34!

We cannot make Vit D naturally during the months of October - March so you're using up any store of Vit D that you had and it's not being replaced by the sun, you're relying on supplements alone so it's not really surprising that it's gone down.

Magnesium is needed for the body to convert D3 into it's usable form. Are you taking magnesium?

Assuming that the unit of measurement is nmol/L then the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

To reach the recommended level from your current level of 34, which is just over "deficiency" level of 30nmol/L in some areas and 25nmol/L in other areas, you really could be doing with supplementing with 5,000iu D3 daily then retest at the end of March.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

PS - also take into account what Bantam has said above.

userotc profile image
userotc in reply to SeasideSusie

Susie. I presume youre targeting the min 100nmol/l of recommended range in advising a vit D dosage of 5000iu/dy?.

With current dosage 2000iu, serum level 34 and mid-target 125 nmol/l in 3mths, I estimate 7-8000iu/dy for body weight 120-140 lb via grassrootshealth.net/projec...

Or maybe I'm doing something wrong?

SeasideSusie profile image
SeasideSusieRemembering in reply to userotc

userotc

I'm not suggesting that they will reach the target level in 3 months, I suggest that they retest in 3 months to check their level.

I don't use the calculator that you have linked to, I don't know their personal details to be able to use it, I tend to go by some figures I have saved from the old Vit D Council website.

If it was me I would probably use more, but I'm not going to suggest that any member uses much more than what is recommended by the NICE guidelines for deficiency (the maximum they suggest is 4,000iu daily). I'm not medically trained and not everyone can take large amounts, I don't want anyone coming back and saying the amount I've suggested has made them ill, so for my own peace of mind then 5,000iu is the maximum I will suggest. They'll get there in the end but it may take a little longer - hence retest in 3 months and see what's been achieved and reassess.

Jazzw profile image
Jazzw

When you say you were taking high dose Vitamin D for 3m, how high a dose do you mean?

Because 1000-2000iu of Vit D isn’t a high dose. That’s not enough to raise your levels when they’re deficient.

TMartin06 profile image
TMartin06 in reply to Jazzw

100,000 iu a month (it doesn't sound that high, but going from nothing to that and it having to be prescribed)It did seem strange to switch me from 100,000/ month to 30,000 when my levels were still low

Imaaan profile image
Imaaan

I was below range and prescribed a dose of 50,000 IU once a week of vit d3. My levels moved from being in the 40s to the 60s several months later. Then my doctor prescribed each day 10,000 taken 5 days of the week. I had better luck on my bloodwork on the spread out dosing. Once I hit the normal range my doctor reduced my prescription to 10,000 taken twice a week but I started supplementing to make up for the rest. For 2 years, I hovered around the 70 mark. Once I began incorporating k2, eating salmon and sardines, it was a game changer and my levels started moving again. I'm not anywhere near optimal but my last bloodwork showed that I was 123 something.

Keep at it and hopefully your levels improve.

TMartin06 profile image
TMartin06 in reply to Imaaan

Thanks for the advice! I'll look into including k2 in my diet. I was originally on a more spread out higher dose, but then the Dr suggested going to daily tablets instead.

shaws profile image
shawsAdministrator

If possible, and you have not yet had a Free T4 and Free T3 tested too. You may have to have a private one and - just in case you decide to do so this is advice:-

thyroiduk.org/help-and-supp...

TMartin06 profile image
TMartin06 in reply to shaws

I did have my thyroid levels checked again, although I'm not sure exactly what they tested for. I'll double check then maybe look into a private test. Thanks!

shaws profile image
shawsAdministrator in reply to TMartin06

Request a print-out of your results from the surgery for your own records. Usually most doctors seem only to look at the TSH result. I doubt they take notice of the FT4 or FT3 or if they had requested these.

A 'full Thyroid Test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Few doctors request all of these. The aim for us, the patient, is a TSH of 1 or lower with both Frees towards the top of the ranges but I think many GPs think if they're within the range that is acceptable.

wellness1 profile image
wellness1

I was able to increase my vitamin D level using a nanoemulsified combination of D3/K2. Pricey, but the softgel and spray didn't get the job done for me.

TeeThom profile image
TeeThom in reply to wellness1

I'm not sure whether it's too late now to post a reply to this but I'm interested in finding out more about the nanoemulsified D3/K2 combo and wondered if you could please share info as to brand you have tried? Many thanks.

wellness1 profile image
wellness1 in reply to TeeThom

Happy to. The brand is Quicksilver Scientific. The price on Amazon has risen quite a bit so it's worth shopping around. At some point I may try Thorne's D3/K2 to see how well I absorb it.

TeeThom profile image
TeeThom

Thank you. Will check both of these out.

HowNowWhatNow profile image
HowNowWhatNow

Do you also try to get out in the sunshine when it appears? I remember a friend saying her Jewish, Glaswegian grandmother took a half hour walk in the middle of the day all year ‘round, to keep her Vit D up. I’ve wondered ever since how she knew this 60 years ago and GPs have only been wising up to Vitamin D’s importance in the last 10 years.

TeeThom profile image
TeeThom in reply to HowNowWhatNow

I've been looking into natural ways to boost Vit D and was thinking the same about the need to get outdoors more. When feeling unwell it's not always easy to find the energy to get out but as you say it's so important. Will definitely make more effort to be outdoors more. Thanks so much for taking the time to share.

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