Comments for elevated PTH but can't tolerate Vitamin D3 in any form?

Hyperparathyroidism?
by: Kerri Knox, RN- The Immune Queen!

Shona,

So, first of all you don't say WHY you can't tolerate vitamin d. Have you tried sunbathing since you live in a sunny climate?

So, I'm not sure why you are relating your vitamin d levels to your PTH and expecting the vitamin d to correlate somehow with the PTH levels. I'm not sure what you are 'expecting' your vitamin d levels to do, but your vitamin d level is super low and it will only get fixed when you get vitamin d, not when your PTH levels are in the normal range. So, unless you get some vitamin d in your body, stop watching your vitamin d levels, they are not going to get any better. And DEFINITELY stop trying to find some relationship between your vitamin d levels and your PTH levels. Beyond the point that a VERY high PTH level can lower vitamin d levels to prevent worsening hypercalcemia in hyperparathyroidism, there IS NO RELATIONSHIP between Vitamin d and PTH levels.

Next, your muscle weakness, fatigue and elevated CPK levels COULD all be due to your low vitamin d levels. If these problems are due to low vitamin d levels, then they are NOT going to get better until you bring your vitamin d levels up.

You say that your potassium levels 'fluctuate', but you don't say whether they are ever too low. 'Fluctuating' within the normal range is meaningless, and there is no relationship between sodium levels and potassium levels, so I don't know why you are watching this relationship either.

Also, you say that you have a 'decline' in kidney function in some tests, but don't say what that means. Unless your BUN and Creatinine are elevated, then this is likely meaningless. And, again, fluctuating BUN and Creatinine levels within the normal range, or going slightly too low at times is meaningless. Also, kidney FUNCTION is not affected by kidney stones, so I'm not sure why you think that you might have kidney stones or why that would have anything to do with your kidney function.

Also, your vitamin d levels aren't mild deficiency, they are pretty severe, despite the fact that is SAYS that they are normal on the test, they are not. Please download my Fact Sheet on Vitamin D that is on the right column of EVERY page to see what your proper levels SHOULD be.

It sounds like you are doing a LOT of speculating about what your blood tests mean, and much of what you are speculating about doesn't have a lot of basis in fact. Are these things what your doctor is telling you? Or are you trying to figure this out on your own?

Next, many of your symptoms, especially the muscle cramping, rigidity- and high anxiety about your blood test levels- are all Signs of Magnesium Deficiency. If you find that you can't take vitamin d because of side effects, then please see my page on Magnesium and Vitamin D.

Kerri Knox, RN

in response to your reply
by: Shona

In response to one of your questions with regards my D3 and PTH status.
I was initially seeing an endochrinolgist who was trying to help me regulate my thyroid, which was ablated 20 years ago with Radio-active iodine.
He also ran some tests at the time and said that I was suffering from "Secondary Hyperparathyroidism" due to "low vitamin D levels".

He put me on Cholecalciferol at the time but for some reason it upset my stomach, so that I was unable to eat at all and felt very ill.

I tried everything from taking it every second day, to buying milk with Vitamin D3 instead but it was all the same. It also caused attacks of muscle pain, severe cramps and and elevated CPK. Which could have been related to the fact that I couldn't eat my carbs. A High carb diet helps to control my Myotonia.

2nd time round I tried another Endo, he seemed OK but mainly dealt with men. He said he had done a study of people in his office to see what their levels were as they worked indoors all day.

I turned out that most of his workers were Vit D3 deficient, at the time their readings were around 30, quite a bit lower than mine.

They were not complaining of muscle problem like myself and appeared to live normal lives.

I live in the sub tropics and make sure I am exposed to sunlight every day.

My corrected calcium was mid range on my last test at the end of Feb and my creatinine was back withing the normal range.

My previous test in Dec 11 however showed my creatinine was 10 points above normal, it had been creeping up over three months,2 months later is it going down again.

I don't have a figure for BUN only the eGFR, which is something that the kidney foundation here in Australia pay a lot of attention to and it was 7 points below the normal range in Dec '11. It too had corrected itself in Feb '12.

Only thing I can think of is I was involved in a serious road accident in March last year and my thyroid test went totally out of range, my TSH went from .9 the week before the accident to 4.9 a week later, on my last test in January it has gone back to .9.
I have no functioning thyriod tissue left now according to my scans and I never changed my dose.
I have been told by my neurologist that I suffer from Potassium Aggravated Myotonia.

It is also know as Myotonia Fluctuans so it is important I keep a close eye on my K levels.
Contrary to popular belief the potassium level determines how much I suffer from the myotonia it doesn't have to be out of range but slight fluctuans are enough to effect me.
My my worry is that I have elevated CPK and muscle pain when using medications and Vit D3 appears one of them.
I also worry that my kidney function could be affected by these elevations in CPK over time.

KInd regards Shona

What are the UNITS of your vitamin d
by: Kerri Knox, RN- The Immune Queen!

Hi Shona,

What are the UNITS they are using for your vitamin d? Usually in Australia, they are using nm/L (nanomoles/Liter). In the US, we use ng/ml (nanograms/milliliiter).

With the 'normal range' that you gave me of 50 to 150, and the fact that your doctors are telling you that you are 'slightly deficient', I assumed that your numbers were in nm/L, but if your numbers are in the units of ng/ml, then 50 to 60 is absolutely optimal and anyone who is telling you that you need more vitamin d is completely wrong. However, if it's in the units of nm/L, then you are severely deficient and you need LOTS more sun to get your vitamin d. By the way, milk is not fortified with D3, it's fortified with cholecalciferol just like your doctor's supplements. This is the synthetic form that I don't recommend that anyone takes, ever.

If you've never tried taking Vitamin D3 supplements that don't contain oil, then you might try those just to see if you can tolerate them. From your response, it sounds as though you've not tried vitamin D3 at all. Also, try taking the vitamin d with your evening meal and that often makes a difference. Another tactic to try is to see if a LARGE dose makes it worse. If a large dose bothers your stomach the same as a low dose like in milk, then simply take 300,000 IU's of vitamin D once every 3 months and get it over with, be sick for a day and not worry about it for 3 months. Or just get LOTS more sun. Getting 'exposed' to sun every day and getting 'enough' sun in order to ensure adequate vitamin d levels may be EXTREMELY different amounts of time. If your levels are not adequate, then you are not getting 'enough' sun. Period. End of story, regardless of whether you THINK that you get enough sun, if your levels are low, then you are not. And if that is the only way that you can get vitamin d, you may want to reevaluate the amount of sun you get and the amount of skin that you expose to the sun when you do get sun.

If the endo that you went to had a bunch of men with levels of 30 that had no problems, this was probably using the units of ng/ml and would simply be very slightly low. If YOUR numbers are in the units of nm/L, then 50 nm/L is actually about 1/2 of 30 ng/ml, and those with levels THAT low DO have muscle pain and weakness in studies. It sounds like you might be getting the different units that vitamin d is measured in mixed up.

Again, if vitamin d gives you attacks of muscle pain and cramps, and your potassium levels are low at times, then I suspect that you are extremely magnesium deficient, EVEN IF your magnesium levels are normal on all of your tests.

Kerri Knox, RN

shona re/Vitamin D3
by: Anonymous

Hi Kerri,
I can now see the inconsistances between what I have been told here in Australia by Endochrinologists generally and what you are pracitising in the USA.
Can we really be so far behind that it is making us sick?
I checked my reports and it appears that we do use nmol/l for testing Hydroxycalciferol levels.
Using a conversion chart on the net from the Australian measurement of 57nmol/l it would appear that it would equate to 22.8 ng/ml in your measurements, in which case why are they regarding this as in the low normal range.

On my report it states that 25-50 nmol/l is a mild deficiency.
12.6-25 nmol/lis a moderate deficiency and less than 12.5 nmol/l is a severe deficiency.
I sometimes wonder where they get these lab figures from, surely there would be an international standard on this.
It is making me quite mad to think that the endos are pushing synthetic D3 as a solution which in my case doesn't work.

I think your idea of taking a large dose once every three months and getting the sickness over and done with might be a better plan, especially in the winter months. It is still quite hot and sunny here at the moment so I will make sure more of my skin is exposed to the sun instead of just my face arms and legs, it is worth a try.

I will try taking magnesium as well as my levels reading were getting towards the low side at this time last year but still within the normal range. They haven't taken a reading since then so I will ask for another blood test to see where it is at first.

What type of Vitamin D3 supplement would you recommend as I am sure there are lots on the market in Australia. Most of the pharmacists here recommend taking Cholecalciferol as do the endo's.

In the old days (I was brought up in the UK),we were given a spoonful of cod-liver oil in the winter months, I think it was once a week. Would that be safe to take these days as I have heard there can be a lot of mercury and other nasties in it, that could of course be a marketing ploy.

Thank you for your advice I can see thing unravelling now where as it was as clear as mud before.

Kind regards,
Shona

We're not much more advanced.
by: Kerri Knox, RN- The Immune Queen!

Hi Shona,

It's not that we are more advanced in the US, the doctors are mostly no better here. I just happened to have done my own research and know this subject backwards and forwards due to my own research, not from the help of any doctors.

A level of 22.8 ng/ml is considered low normal because doctors don't know any better. Please read my page on Normal Vitamin D Levels where I explain this.

Again, getting a magnesium level is worthless. Please see my page on Magnesium Levels to see why that is true. This is another thing that doctors are not aware of.

Just find a vitamin D3 supplement, making sure that it is not made with oil is the main recommendation that I make since most of the oils in supplements are rancid. If it's made with coconut oil or something called 'MCT's', that is fine since those don't go rancid. Otherwise, Vitamin D3 is vitamin d3.

I don't like cod liver oil. I discuss this on my page Cod Liver Oil Information.

USLESS ENDOGRINOLOGIST IN UK
by: DESPERATE

Why are Endorgrinolgists so ignorant on Hyperparathyroidism in the UK????? Ive had years lurching from one symptom to another. Being 'poisoned' by one Edogrinologist after putting me on strong Vit.D even though Rheumatologist who discovered my severe Vitamin Deficiency said I couldn't take it after trying lower & lower doses Endo told me to take Lamberts Vit D - i though I was having a heart attack, i was feeling so awful - turned out I have Costochondritis! I also have Osteopenia, pains all over, tiredness, lethargy,frequent wee infections, thirst weight loss & 3 seizures for which i was hospitalised. I am really despairing now. I know I have Primary Parathyroidism and NOT Secondary (my vit.d levels ok & kidneys ok at moment) No one will listen - each symptom is treated separately
Need to win the lottery & visit Dr.Norman methinks

Low vitamin D
by: Greg

I have many of the same symptoms as many of you do. I have read many of the comment here and those of you who question your doctors are right to do so, few few really understand the thyroid or parathyroid. I have had low vitamin D for over ten years now, maybe longer. My range has been from 2-32 and no higher. I take 2000 units of Vitamin D daily but it does not help much. I also get 20-30 minutes of sun a day from spring to late fall. I would warn all of you against taking vitamin d with Magnesium Stearate as this can cause some of your problems, as can Titanium Dioxide.

I have weak muscles and muscles loss, muscle and tendon pain. I also took a few rounds of Cipro which didn't help. There is something call hypothyroidism type 2 and hypoparathyrodism type 2 where your body produces enough of these hormones and chemical but can't utilize them, kind of like diabetes type 2.

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