High Vitamin D level: Hi all. I am still waiting... - CLL Support

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High Vitamin D level

Horsechestnut profile image
25 Replies

Hi all. I am still waiting to get into the Hematologist for an assessment Meanwhile had my cytometry drawn today. Meanwhile, my vitamin D -25 has come back quite high. 80. This has me quite concerned. Just wondering if others have had same.

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Horsechestnut profile image
Horsechestnut
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25 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Horsechestnut,

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In the past when my level reached 90 ng/mL my doctor had me reduce my supplemental intake. He was not concerned until I would be much higher than that. (NOTE- there is another metric of nmol/L* which has very different limits, so people in other countries may need to refer to their own lab limits)

Here are my recent results and the Weill Cornell NY Presbyterian levels

Component Your Value Standard Range Flag

25 OH Vitamin D3 52.5 ng/mL 30.0 - 80.0 ng/mL

Deficient: <20 ng/mL

Insufficient: 20-29 ng/mL

Optimum Level: 30-80 ng/mL

Possible Toxicity: >150 ng/mL

-

Here are links to other suggested max levels

healthline.com/nutrition/vi...

Hypervitaminosis D is defined as blood vitamin D levels over 100 ng/mL, while vitamin D intoxication is defined as serum levels over 150 ng/mL (6Trusted Source, 7Trusted Source).

Recommendations on optimal vitamin D levels vary, but research suggests that levels between 30–60 ng/mL are likely optimal and may help protect against illness and disease (8Trusted Source, 9Trusted Source).

Even when taking high dose vitamin D supplements, it’s unlikely that a healthy person’s blood vitamin D levels would come close to reaching excessive or toxic levels.

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*Because you get vitamin D from food, sunshine, and dietary supplements, one way to know if you’re getting enough is a blood test that measures the amount of vitamin D in your blood. In the blood, a form of vitamin D known as 25-hydroxyvitamin D is measured in either nanomoles per liter (nmol/L) or nanograms per milliliter (ng/mL). One nmol/L is equal to 0.4 ng/mL. So, for example, 50 nmol/L is the same as 20 ng/mL.

Len

Horsechestnut profile image
Horsechestnut in reply tolankisterguy

I have not been supplementing, and it is winter here. I do walk outside daily, but mostly covered due to cold weather. I used to always be low. Like 20. In August it jumped to 46, but I had been getting summer sun daily. Now it is 83. The only thing I can think of, outside of malignancy, is my adaptogenic mushroom coffee. My calcium is not high.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toHorsechestnut

Mushrooms do produce vitamin D if exposed to the sun or to ultraviolet light. pubmed.ncbi.nlm.nih.gov/303... I said earlier, there are two units of measurement ng/ml or nmol/L, with overlapping reference ranges of 32 – 100 or 60 – 160 respectively, so for either of those units of measurement, you are still in range. Your result should be at a seasonal low point now, given you live in the northern hemisphere and counts tend to be at their lowest at the end of winter to early spring.

I wouldn't get too concerned about your high count, for the many reasons outlined in this article:

racgp.org.au/afp/2014/march...

The article also lists which health issues correlate with high and low vitamin D counts; having one too high or too low and it's better to be on the high rather than the low side.

Neil

AussieNeil profile image
AussieNeilPartnerAdministrator

In which units are your test results? There are two overlapping ranges. Are you taking a vitamin D supplement? Are you in the sun a great deal?

While there is a sweet spot above which you can begin to increase risks to your health, a highish vitamin D serum level is generally not a serious concern. If you have been regularly taking a high amount of vitamin D supplement and stop, your serum vitamin D level should drift down over the next few months as the stored amount is drawn down.

Neil

Horsechestnut profile image
Horsechestnut in reply toAussieNeil

Thanks, AusdieNeil, it reads vitami D, 1,25 Dihydroxy. 80.4pg/ml. Standard range19.9=79.3 H flag

reiverdog profile image
reiverdog in reply toHorsechestnut

1,25 OH Vitamin D different than the usually tested 25OH Vitamin D

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toreiverdog

I wouldn't worry about being 1.1pg/ml or less than 1% over the upper reference limit! If you review and adjust your vitamin D intake, I expect it will be in range when retested.

Thanks also for highting the importance of both stating specifically what was measured and your lab's reference range.

Neil

kitchengardener2 profile image
kitchengardener2

Just looked at my latest blood results and can't see that they test for Vitamin D. I take a cod liver with multi vitamins including D and an additional vitamin D tablet every morning after being advised to do this by a practice nurse. My last bone scan which was three years ago at least showed that my bones were strong. Will read follow up posts on this with interest.

mrsjsmith profile image
mrsjsmith in reply tokitchengardener2

Alice I think it isn’t automatically tested, but my hospital pharmacist found mine was 79, so it may be one of those tests we don’t usually see. Sadly my bones are not strong.

Colette

LeoPa profile image
LeoPa

Do you eat much fish?

Horsechestnut profile image
Horsechestnut in reply toLeoPa

Some, but nota lot.

LeoPa profile image
LeoPa in reply toHorsechestnut

Then it must be the mushrooms? What about vitamin d fortified cereals and such?

Horsechestnut profile image
Horsechestnut in reply toLeoPa

Nope, no cereals. I've been intermittent fasting and following a diabetes diet via Dr. Jason Fung (The Diabetes Code) because I was prediabetic with an A1C of 6. I've lowered my fasting blood sugar and my A1C is now 5.7. I've been eating more eggs, greens, etc. No processed foods or refined carbs at all. I'm hoping that's what drove my D up. But I am concerned because high D can signify a malignancy as well. I'll know more once I finally get in to see the hematologist.

70s-80s-overlander profile image
70s-80s-overlander in reply toHorsechestnut

Quote, "high D can signify a malignancy as well," unquote. Actually, I believe it is HIGH CALCIUM (pushed high by vitamin D) in the context of HIGH PLATELET COUNT that can be suggestive of malignancy.

Horsechestnut profile image
Horsechestnut in reply to70s-80s-overlander

Good. Thanks for that clarification. Platelet count looks okay. Monocytes are low.

Abnormal Lymphocytes, Percent 3 %

<=0 % H

Absolute Neutrophil 3.1 K/mcL

1.8 - 7.7 K/mcL

Absolute Lymphocytes 7.7 K/mcL

1.0 - 4.0 K/mcL H

Absolute Monocytes 0.1 K/mcL

0.3 - 0.9 K/mcL L

Mine own Vitamin D was over 90 on my last bloodwork. Usually between 60 and 90. But I make sure to get a half hour of sun every day and I eat a 100% meat-based diet. I cycle in Vitamin D supplements every now and again. I believe it is important to maintain an optimal immune system.

BurtJason profile image
BurtJason in reply to

How long have you been on the carnivore diet?

How is this WOE working for you?

in reply toBurtJason

I've been doing it for about a year and a half. I love it and have never felt better in my life. I started it because of CLL. But I found very quickly that my Acid Reflux/GERD completely disappeared. I don't need medication (Omeprazole) any longer. I also used to suffer from numerous allergies. They went away as well. There have been numerous other little improvements as well. I have brown roots on some of my gray hairs, for example.

With regard to CLL, I just don't know. I don't know what my numbers would have been if I stayed on a standard diet or even on Keto. But I do know that in the first 6 months after my diagnosis, my numbers got worse. They've been pretty steady for most of the last 18 months. My hs-C-Reactive Protein measure went from 3 mg/L down to 0.05 mg/L. hs-CRP is a measure of inflammation that I like to track. 3 mg/L is the high end of the normal range. If red meat was inflammatory, I don't think that would happen.

It's pretty clear to me, based on my body's response, that this is the natural way of eating for humans.

BurtJason profile image
BurtJason

That’s great! Sounds like you’re on the right path. I tried it for 6 weeks once. I used it as an elimination diet. I had great results while I was on it. I tried it again a year later but with fruit and didn’t have the same results. Had real problems with my bowels whereas I had no problems in that area doing all carnivore. I think this is the way we are really supposed to eat. I think grass fed without hormones and antibiotics is the way to go. This is what humans mostly ate until the past 10,000-15,000 years.

I am 70 years old and was diagnosed with CLL about 4 months ago. My WBC was 24,000 and my lymphocytes were 20,000. I started on a very low carb diet. Very low processed foods. No sweets of any kind….even fruit….just an avocado every day. No seed oils. I make my own dressing from organic olive oil and organic red wine vinegar. Mostly organic vegetables in my salads. No flour products of any kind. Once in a while, I may have some rice. Proteins consist of King Salmon, wild shrimp, anti-biotic and hormone free NY Strips or rib eyes. Cheese is from southern Europe (A-2 cows) or pecorino Romano (sheep). Also eat some Macadamia nuts and pistachios. Time restricted eating between 10am-4pm. 40 hour water fasts every other week. Kimchi everyday. Fresh turmeric and ginger root chopped in salad dressing. Pau D’arco and Cat’s Claw are some supplements that I take along with some vitamins. Norwegian Cod Liver oil.

My numbers have been going down the last few months. My WBC’s are 15,000 and my lymphocytes are down to 12,000. I won’t get too excited as I know these tests can go sideways pretty quick. My father lasted a year and a half after diagnosis before he passed. However, he was on the standard American diet, had diabetes and ate lots of sugars and carbs.

My doctor says to keep doing what I’m doing. He is quite open minded for a doctor. Anyway, I wish you the best in your fight against CLL. I am very interested to see how this way of eating affects your numbers. I think you are on to something. Feel free to stay in touch if you’d like.

Burt

LeoPa profile image
LeoPa in reply toBurtJason

Wow, great news, great results! I'm right there with you guys. 10th day of strict carnivore plus coconut meat and coconut milk,dill pickles,sour cabbage, occasionally broccoli and the like. Zero insulin diet. Or close to. Cravings are subsiding slowly.

BurtJason profile image
BurtJason in reply toLeoPa

Nice! Good job. The less processed foods, the better in my opinion. Good luck. Post if you get steady or better numbers.

LeoPa profile image
LeoPa in reply toBurtJason

Last check was steady. No change in 6 months. I hope it's better next time 🙂.

BurtJason profile image
BurtJason in reply toLeoPa

nothing wrong with steady

Lars-DK profile image
Lars-DK

Hi Horsechestnut,

This information is from the Danish MD handbook

Measurement of plasma 1,25(OH)2 D is unsuitable for assessment of vitamin D status, as this metabolite is under active hormonal regulation and can also be compensatorily elevated in mild degrees of osteomalacia

Vitamin D is hydroxylated in the liver to 25-hydroxyvitamin D (25-OHD), which is the main circulating form of vitamin D

The further hydroxylation takes place primarily in the proximal tubules of the kidneys, where 25-OHD is further converted by an 1-alpha hydroxylase to 1,25-dihydroxyvitamin D (1,25(OH)2 D), which is the metabolically active form

Vitamin D is stored in adipose tissue. Since the liver's synthesis capacity is very high, it is assumed that plasma 25-OHD reflects the individual's total vitamin D status

Vitamin D from the skin and diet is metabolized in supplies to 25-hydroxyvitamin D, which is metabolized to its active form 1,25-dihydroxyvitamin D in the kidneys. The kidney's production of 1,25-dihydroxyvitamin D is stimulated by parathyroid hormone (PTH) and by hypophosphatemia and inhibited by 1,25-dihydroxyvitamin D3

The main function of vitamin D is to increase the absorption of calcium, magnesium and phosphate from the intestine

I'm not a doctor, but I would request an investigation into osteomalacia, it might be a mild case of osteomalacia

it is necessary to measure 25 OH D3 This should be supplemented by measuring parathyroid hormone, alkaline phosphatases and ionized calcium

I finished two years of venetoclax treatment eight months ago, with no serious side effects. but I suspect that malabsorption/diarrhea is causing me low levels of vitamin D3 and calcium.

On monday I visit my GP to get answers to blood tests

I hope my answer can be useful for you.

Excuse my grammar English is not my first language.

Lars

Horsechestnut profile image
Horsechestnut in reply toLars-DK

Thank you, this is very helpful, Lars. I changed my eating habits radically in order to reverse "prediabetes" and in doing so eliminated my IBS D (diarrhea) which had been a part of my life for a decade. I now wonder if because of that my body is now storing as much D as possible because--suddenly--it can. I know I'm drifting off CLL exclusive concerns, but all these things are so interconnected.

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