Hypervitaminosis D

[Mud Island Dweller]

Due to the fact a lot of people just take supplements especially vitamin D thought l would post this here. l am under supervision most people don't bother and just pop supplements this is why you shouldn't. And no l didn't just take suppliments l insisted on a blood test which showed my levels were very low post first blood test and l was under treatment as per NICE guidelines.

I finally got round to looking in more depth at the hypervitaminosis D l have. l only got my latest levels on the 19th was told to stop the supplements around 6 weeks ago post 1st blood test blood test 5 weeks into treatment as l had enough after 10 days loading and 4 x once weekly tablets that were meant to last 6 months. (my fault not asking levels at that stage)

Anyhow my latest levels are in toxic range 154 (toxic starts at 150) l have some liver and bone problems showing on paper not very high but there none the less.
AlKP is 198 should be 30-130
Aminotransferase 57 should be 35

l don't think l have any symptoms although tinnitus l have had for several years due to ear damage fatigue for yrs due to bad sleep pattern/nightwork. Nothing else is obvious

l have now cut down on all calcium and vit D products just my 2 scrambled eggs for breakfast and small amount of single cream with my mixed berries at lunch. Does anyone have and other ideas on foods to have or avoid and how long the vit D should take to go to normal?

Forgot to say it also says corticosteroids or bisphosphonates may be given l do not want steroids anyone know anything about the 2nd group of drugs please?

l see the dr tomorrow just pre looking so forewarned is forearmed.

Many thanks
MID

 

[noblehead]

A precautionary note there MID, I don't think anyone should be taking high doses of Vit D or any other supplements without knowing that they are deficient in the first place, and only then they should do so under the supervision of their HCP's.

 

[Mud Island Dweller]

I agree Nobelhead that's why l said several times l was under supervision of the dr had a pre blood test l had a blood test at 4 weeks and l had a test at 6 weeks l am always saying never take vitamins without checking (and always getting shot down by people who seem to think l am being stupid it is just a supplement). all my medication was Px and not just supplemented ad-hok

By the regular info by NICE l should have been fine at the dose and rate l was for 6 months at least and onwards. l hit too high at 6 weeks and now have problems but they are l hope contained and treated. Just taking supplements at the recommended levels means you have no idea what is going on.

Should have added in first post l am going to take high phos foods to help bind the calcium.

 

[Totto]

Your result was 154 ng/ml? Not nmol/l?

 

[Bluetit1802]

I totally agree with you Mud. I have seen people on this forum popping pills without knowing if they need them or not.
Personally, I am concerned I'm not getting enough calcium. I have a review with my nurse this week and have mentioned this to her. She is going to do a blood test for me.

 

[Mud Island Dweller]

Will double check the ending tonight all l know it is 154 and it is down on the print out as toxic and all sites say over 150 is toxic.

 

[kesun]

Thanks for the warning, @Mud Island Dweller . My daughter has been on calcium + vitamin D supplements for several years. They were prescribed for osteopoenia and maintained because of the risk of weak bones in wheelchair users. But her blood wasn't tested when she started them, and I haven't been told it's being tested for that purpose since. Thanks to your information I'll now check back through her previous routine bloods and see whether it's being monitored.

Kate

 

[Totto]

Will double check the ending tonight all l know it is 154 and it is down on the print out as toxic and all sites say over 150 is toxic.

154 ng/ml would be on the toxic side of 150, yes, but certainly not 154 nmol/l. Surely it says what unit the test is in?

 

[Mud Island Dweller]

l didnt look close as l said the print off said toxic and l got a phone call within 3 days of 2nd test (1st post meds) saying stop... am at work hence not got info

 

[AndBreathe]

I don't believe I have ever been tested for Vit D issues, and living, for a few more weeks, in the Tropics, I take my Vit D in its natural form, by wearing a bikini most of the day, most days. I wonder where my levels sit.

Sorry, MID, just my meanderings,in thought. I haven't done much reading around Vit D. Perhaps I should, just for my own curiosity.

I hope you get things back in range as soon as possible.

 

[oldgreymare]

I don't believe I have ever been tested for Vit D issues, and living, for a few more weeks, in the Tropics, I take my Vit D in its natural form, by wearing a bikini most of the day, most days. I wonder where my levels sit.

Sorry, MID, just my meanderings,in thought. I haven't done much reading around Vit D. Perhaps I should, just for my own curiosity.

I hope you get things back in range as soon as possible.

According to my lab report references levels of 70-100 ug/L ( I think this = ng/ml - need to look up) are typical for "after strong UV light exposure, holiday in sun rich countries, lifeguards"
Pre supplement my levels were 10ug/L = moderate deficiency. Last test following D3 supplements of 6,000 IU per day was 77ug/L just above range recommended for osteoporosis (which I have). I've cut back to 5,000 IU next test soon so will see if in "ideal range".

Just to add to everyone's challenges there have been some reports suggesting low vit D levels are an outcome of inflammation, metabolic syndrome, autoimmune conditions, etc rather than a cause...

Same lab references cite levels above 100 ug/L as "beginning intoxication"

 

[Mud Island Dweller]

All labs have different ranges so l just stick to the guidelines.
At least l know why these past few weeks been harder to hold bg levels stable when l am unstable wasnt just colds x2 monthies x1 sore tgroat 6 weeks x1 it was this elephant in the room

 

[Totto]

This is what VitaminD council says:

My level is greater than 150 ng/ml

You have toxic levels of vitamin D, which can be harmful to your health. You should take steps to lower your levels to below 100 ng/ml unless you’re under the supervision of your doctor.


To lower your levels, stop taking supplements. After three months, test your vitamin D levels and adjust the amount of supplement you take once your test results show your level has dropped back down to the normal range.

And about high vitamin D/calcium:

When your 25(OH)D levels are too high, this can cause high levels of calcium to develop in your blood. High blood calcium is a condition called hypercalcemia.


The symptoms of hypercalcemia include:

• feeling sick or being sick
• poor appetite or loss of appetite
• feeling very thirsty
• passing urine often
• constipation or diarrhea
• abdominal pain
• muscle weakness or pain
• feeling confused
• feeling tired

In some rare diseases, you may be at risk of hypercalcemia even if you have low vitamin D levels and haven’t taken much vitamin D. These diseases include primary hyperparathyroidism, sarcoidosis and a few other rare diseases.

Just curious, how much vitamin D were you prescribed? I have had to take around 5000-6000IU per day during the dark months to keep my level decent but nothing much really happened until I started on thyroid hormones. Last autumn it was 97 nmol/L and my most recent test from March was124 nmol/L. I was found to be vitamin D deficient a few years ago with a level of 48. With vitamin D supplement all the pain in my hands are gone, used to be terrible every winter.

 

[oldgreymare]

This is what VitaminD council says:

My level is greater than 150 ng/ml

You have toxic levels of vitamin D, which can be harmful to your health. You should take steps to lower your levels to below 100 ng/ml unless you’re under the supervision of your doctor.

To lower your levels, stop taking supplements. After three months, test your vitamin D levels and adjust the amount of supplement you take once your test results show your level has dropped back down to the normal range.

And about high vitamin D/calcium:

When your 25(OH)D levels are too high, this can cause high levels of calcium to develop in your blood. High blood calcium is a condition called hypercalcemia.

The symptoms of hypercalcemia include:

• feeling sick or being sick
• poor appetite or loss of appetite
• feeling very thirsty
• passing urine often
• constipation or diarrhea
• abdominal pain
• muscle weakness or pain
• feeling confused
• feeling tired

In some rare diseases, you may be at risk of hypercalcemia even if you have low vitamin D levels and haven’t taken much vitamin D. These diseases include primary hyperparathyroidism, sarcoidosis and a few other rare diseases.

Just curious, how much vitamin D were you prescribed? I have had to take around 5000-6000IU per day during the dark months to keep my level decent but nothing much really happened until I started on thyroid hormones. Last autumn it was 97 nmol/L and my most recent test from March was124 nmol/L. I was found to be vitamin D deficient a few years ago with a level of 48. With vitamin D supplement all the pain in my hands are gone, used to be terrible every winter.

Have checked - ug/L is same as ng/ml. Conversion factor to nmol/L is 1 ng/ml = 2.496 nmol/L. So Totto's levels translate to starting at 19 ng/ml rising to 39 and latest 50 ng/ml, so even on 6,000 IU daily Totto is still in normal range. Over 100 ng/ml is high, over 150 ng/ml consider toxic.

So also just curious what dose you were prescribed? Sunlight is by far the best stimulator of Vit D production - have you been outside regularly going into UK summer - may mean you don't need supplementation at least in the brighter months. Your doctor can test for high blood calcium levels directly as well.

Anecdotally I felt I benefited with better hair, faster skin healing and stronger immune status generally when on higher doses of Vit D, but impossible to prove if any actual cause and effect. Main reason for supplementation was to improve bone strength - next detailed evaluation in August.

Hope you can regain sub-toxic zone soon!

 

[Mud Island Dweller]

As stated in many other posts l was very low due to 11/12 yrs of night work and although not on nights now since 2012 it isnt easy to just "get outside" amongst other things l work all over the country in new places most weeks and you can not nip out mid surgery, when people do not know you nor would l want build a reputation for running off "cause it is sunny" although maybe your job allows it. Furthermore UK sun is weaker than gnats p and is only of use may to august between 11:00 and 15;00 when your shadow is shorter than your height.

I was on 10 days loading dose of l think 40 000iu/day then l think 10 000iu 1x/week for 6 months my first post start blood test was delayed about a week due to work so l had it just over 5 weeks from first tablet. My first measure if l remember correctly not hunting file and info as about to go out to sort shopping was 25 hence on tablets it is now 154

 

[Indy51]

I'm glad I decided to take the daily smaller dose rather than the weekly mega dosing - I never quite trusted the concept and taking tablets daily makes sticking to a routine much simpler. Once I attained normal blood levels, I've only supplemented smaller doses when I don't feel I'm getting enough sun. Since my last test showed normal levels, no way would my GP keep recommending continual testing, so I just play it by ear. I've never taken supplemental calcium so don't feel I have to worry too much on that score. Seems like anyone taking calcium should be taking K2 as well.

 

[Pipp]

Due to the fact a lot of people just take supplements especially vitamin D thought l would post this here. l am under supervision most people don't bother and just pop supplements this is why you shouldn't. And no l didn't just take suppliments l insisted on a blood test which showed my levels were very low post first blood test and l was under treatment as per NICE guidelines.

I finally got round to looking in more depth at the hypervitaminosis D l have. l only got my latest levels on the 19th was told to stop the supplements around 6 weeks ago post 1st blood test blood test 5 weeks into treatment as l had enough after 10 days loading and 4 x once weekly tablets that were meant to last 6 months. (my fault not asking levels at that stage)

Anyhow my latest levels are in toxic range 154 (toxic starts at 150) l have some liver and bone problems showing on paper not very high but there none the less.
AlKP is 198 should be 30-130
Aminotransferase 57 should be 35

l don't think l have any symptoms although tinnitus l have had for several years due to ear damage fatigue for yrs due to bad sleep pattern/nightwork. Nothing else is obvious

l have now cut down on all calcium and vit D products just my 2 scrambled eggs for breakfast and small amount of single cream with my mixed berries at lunch. Does anyone have and other ideas on foods to have or avoid and how long the vit D should take to go to normal?

Forgot to say it also says corticosteroids or bisphosphonates may be given l do not want steroids anyone know anything about the 2nd group of drugs please?

l see the dr tomorrow just pre looking so forewarned is forearmed.

Many thanks
MID

I mentioned on forum a few weeks ago that it is not a good idea to take vitamin supplements, without checking with doc first. Especially for those doing Newcastle diet with meal replacements which are supposed to have all of the daily requirement of vitamins and minerals.
Didn't pursue it further when someone suggested it was 'dangerous' for me to be making such statements.

 

[Mud Island Dweller]

Ahhh well Pipp we are both naughty people for trying to do things correctly ..and l stand by my comments as l am sure do you get it done properly. If l wasn't then l would be happily popping pills that can cause problems.

My Dr and the vet l am working with at the moment (a friend) both said leave diet alone it will wear down and my levels are nothing to worry about as l am not bulking them up. It also explains why my BG has been harder to keep low...ahh well these things are sent to try us

 

[Pipp]

Ahhh well Pipp we are both naughty people for trying to do things correctly ..and l stand by my comments as l am sure do you get it done properly. If l wasn't then l would be happily popping pills that can cause problems.

My Dr and the vet l am working with at the moment (a friend) both said leave diet alone it will wear down and my levels are nothing to worry about as l am not bulking them up. It also explains why my BG has been harder to keep low...ahh well these things are sent to try us

Yes, there is always something waiting to jump out and shock us out of any sense of being in control of the darn diabetes.
Hope you get it all at a comfortable level soon.