Vitamin D: Hi Just some info. Over the... - Endometriosis UK

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Vitamin D

Moon_maiden profile image
10 Replies

Hi

Just some info. Over the last couple of years I’ve had several vit D tests. Back in 2019 the minimum level was 75, this has recently been reduced to 50. I’m only in the 80’s and will definitely keep taking it. The top end is 200 or 250, huge difference.

This either means they’ve reduced the level based on more people being tested and low levels are showing as average, they just don’t want everyone to show as deficient or there is substantial evidence to show normal starts at 50, which I haven’t found yet. Be interested in any links showing this.

It’s an important nutrient for the hormonal system.

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Mountainliving profile image
Mountainliving

Hi! After a blood test in spring they found a significant deficiency and now I have to take 2000 IE per day - does vitamin D relate to or affect endometriosis? Or does it just tie in with hormonal balance?

Moon_maiden profile image
Moon_maiden in reply to Mountainliving

Did they say what your level was? Just intrigued with different places. Low seems to be common with Endo, but not enough research like most things. It’s more a hormone than a vitamin, copied from an endocrinology site;

What is vitamin D?

Vitamin D is actually a hormone rather than a vitamin; it is required to absorb calcium from the gut into the bloodstream. Vitamin D is mostly produced in the skin in response to sunlight and is also absorbed from food eaten (about 10% of vitamin D is absorbed this way) as part of a healthy balanced diet. The liver and kidneys convert vitamin D (produced in the skin and taken up in the diet), into the active hormone, which is called calcitriol. Active vitamin D helps to increase the amount of calcium the gut can absorb from eaten food into the bloodstream and also prevents calcium loss from the kidneys. Vitamin D modifies the activity of bone cells and is important for the formation of new bone in children and adults.

We know Endo effects the digestive system, magnesium is often low in women as well.

I think there should be more tested and for Gynae getting a baseline hormone level, D, magnesium, thyroid.

I take that strength, I use one from the US through Costco.

Mountainliving profile image
Mountainliving in reply to Moon_maiden

They didn't say, but I had another blood test a couple of weeks ago and a follow up appointment at the end of September, so I'll ask, curious now! Thanks for the info!

Moon_maiden profile image
Moon_maiden in reply to Mountainliving

Hi, sorry missed this. Let me know how you get on 🙂 not much better on follow up times

bluebug profile image
bluebug

The different adequate levels depend on what lab does the vitamin D test and the NHS area you are in. It's been the same way for over 12 years. (Well since I was severely deficient.) If you have to get private tests to keep an eye on your level then just choose a lab you know has a higher adequate level.

The only test that I know has been updated in that time is haemoglobin iron levels. All labs now use the WHO minimum level, which is higher than what some labs used by the NHS had set as their minimum level.

Moon_maiden profile image
Moon_maiden in reply to bluebug

Hi, it’s amazing the differences, I’m sure vit D is more important than currently recognised. We’re spending more time indoors. I know I was better when I was outside all day.

Could I ask why you were tested?

There have been a couple of changes, the kidney level has changed, the min went from 60 to 90. Since then mine has continuously shown as 90, whereas it was fluctuating.

I’ve done Medichecks a couple of times in the past. Not sure on their levels.

bluebug profile image
bluebug in reply to Moon_maiden

I had vitamin D deficiency symptoms but it took 8 visits to a GP over a year before I saw someone who guessed what it could be amongst other things. The GP I saw on the other 7 visits told me I was making my pain up.

I then got all my blood test results from tests taken while at the practice, and moved to another GP practice where if test results come back out of range they actually follow up with you.

Moon_maiden profile image
Moon_maiden in reply to bluebug

It’s horrendous, I totally understand. I don’t understand why GPs don’t believe patients, how is that a thing! I’ve experienced the same and still do, Gastro fails to believe I had same symptoms before taking opiates and is obsessed with it. I’m going to ask GP for back up.

That’s great you have a good GP now 🙂 Do you find they believe you at the new practice?

I’ve been registered for online services for ages and can see the results. The NHS is getting better as it told me to chase what was put through as an urgent referral. I’ve spoken to someone but still waiting for a date and that was sent through beginning of August.

How’s Endo doing at the moment?

Sholla profile image
Sholla in reply to bluebug

Hello Bluebug

I have not yet been diagnosed with endo but its highly suspected. Can l ask how deficient you were in vit d and how you got your levels up? I just had some results done privately and they are extremely low at 31 (the lab used say it should be between 50 - 200). The thing is though I've been taking vit d pretty much religiously since covid and only just finished a course of 2000 daily. Any ideas why it may still be so low?

bluebug profile image
bluebug in reply to Sholla

Mine was under 12.

There are different protocals depending on level, and what CCG/health board you have. If you google you may find advice from the local hospital/CCG/healthboard your GP practice uses.

In my area you are suppose to take upto 2,000 IU per day then not bother retesting as you should reach an ok level within a few months.

I know a couple of people in my own area who were around your level, and in reality it really depends on your lifestyle whether that will be sufficient for you. So one was fine but the other wasn't.

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