help with vit D levels

sam52:  Thank you for your response.  It IS a small world after all!   I had the invasive parathyroidectomy in 2002 (removal of a grape-sized benign tumor and parathyroid gland) and have primary hyperparathyroidism AGAIN.  Like you, no calcium for me, you described it SO very well...the calcium gets leeched from the bones into the bloodstream.   I am sorry to hear your bone density issues increased though even on the bone drug.  That's what I fear.  Yes, the optimal level of vitamin D3 from my oncologist is 70-80.  I hope your calcium level and bone density improve for you.  THANKS so much for your input.

Joytotheworld:  WOW on your vitamin d levels, KUDOS to you!   I like your (and some others on here) dosage, and will suggest that to my endocrinologist when I see him next week.  I also am fair-skinned, plus migraines, so no sun for me either.  GOOD FOR YOU!!!

~juli

Wow, you guys have so much information, it's insane!  I love it.

Sam52 ~ I have Hypothyrodism (obviously opposite of Hyperthyroidism)...So cool to hear you tolerated the Aromasin so well...I wonder if that would be an alternative to Femara?  The Femara is very much affecting my joints, and some muscles. 7.5 years...that is wonderful. Yes, I hear that the AI's really work to deplete the bone density.  I think it is about time that I request my PCP have me see an endocrinologist at this time...(he declined it before). 

Joytotheworld: will try your regimen if my Onc does not permit me to have the D levels tested this week.

All the doctors I have really minimize the need for monitoring these levels...so interesting. 

sanaisa - I had hyperPARAthyroidism.....different from thyroid.The 4 parathyroid glands (situated around the thyroid) regulate calcium in the body.When (usually) one gland gets a tumor (benign adenoma), the other 3 shut down and there is over-production of parathyroid hormone.This leads to the calcium 'thermostat' going awry.

So for this reason, both the aromasin and the parathyroid tumor took calcium from my bones and caused osteoporosis.Thyroid disease will not affect calcium levels in your body, but might well be affected by vit D levels.It seems that the current thinking is that vitamin D is connected to just about everything.

Some people have found that switching AI's can bring relief of side effects; I guess I was very lucky not to have had any with aromasin.It might be worth asking about switching if you are experiencing a lot of pain.

Sam

Another interesting tidbit about Vitamin D is that it helps you absorb your calcium. Vitamin D, along with Magnesium help you keep strong bones because the Vitamin D allows your intestinal tract to absorb calcium properly. In addition to Vitamin D, my nutritionist has me taking Magnesium Glycinate for better absorption all around. I have not added any calcium beyond what I get in my Multi-Vitamin, but that's the next question I will ask the nutritionist.

JO:  I also have hypothyroidism, so I bet anything vitamin d deficiency affects that as well.  I don't find literature saying that, but heck, we can't find much literature on vitamin d deficiencies on ANY of these diseases.  I never OD'd on vitamin D, so don't know the answer to that one.  Yes, welcome to the world of migraines~!   OUCH----brain is overworked!   :O       ~juli

Jo--I had heard of some people being very sensitive to magnesium.  Sorry you're one of them, and I hope you find a solution to your issues soon!

Sam:  Thank you.  My endocrinologist believes the high PTH/calcium is due to the vitamin d deficiency believe it or not.  There is no adenoma (sestamibi scan again this time, but had that when I DID have the adenoma, and it didn't find it, only thru surgery in 2002 did they find the benign tumor).  Yes, it's funny people don't hear the whole word:  PARA-thyroid. 

Well, that's what I have to discuss next week with endocrinologist is the bone drug and switch to aromasin...maybe now my vitamin d levels/calcium/pth have improved, don't know yet (bloodwork was Monday).  Thank you, I'd LOVE to lose this stupid tamox/early post-menopausal weight gain, I hate it.  The hot flashes/night sweats can go too, been 4 years now, body, ya listenin?

   Take everything with humor!   One HAS to, my gosh!  

Sam:  how is your parathyroid now that you had a parathyroidectomy?   calcium level back to normal?   thank you for your concern, truly!  ~juli

Marianna:  That's also the hope here, that the vitamin d levels have improved my parathyroid and calcium levels as well as the vitamin d deficiency.  You will love this one:  My PTH levels after radiation went from high normal (70-90), to:   748!!  Then, it dropped to 340, and fluctuated between EX-tremely high.  NO one had answers...but me.  My answer?   To make this short, your parathyroid glands (4) are located between the top of your neck to your chest (NOT just in the neck area as most people/even doctors 'assume').  My parathyroid adenoma was towards my LEFT breast in 2002 (removed with the diseased gland--parathyroidectomy).  MY answer to the WAYYY increased PTH levels after radiation?  RADIATION TO THE CHEST!!!!  NO ONE believed that and dismissed it totally.  Even my radiation oncologist, he said, nooooo, the parathyroid glands are behind the thyroid glands in the neck, you didn't get radiated there.   So, that's a bit of my story, lol.   It was whacked out for a couple years, now it's high normal again (70's).  Would love to see if taking the D2 for 12 weeks did anything at all.  Will know next week. 

I hope that your levels are resolving as well....wow, it's so funny to hear about this affecting others and others having bc as well (no familial history of cancer for me anyway).  GOOD LUCK, keep us posted!    ~juli

JO-5

Good post.  No one should be mucking about with any supplements without notifying her doctor.  Vitamin D toxicity is extremely rare but it can happen. No toxicity has been reported for doses below 10,000 IU per day.   The more common toxicities from supplements are due to taking too much Vitamin A, too much Vitamin E, too much Zinc. 

Even if supplementation is approved by the doctor, one should also do the research from several sources that do not sell supplements themselves.  Sometimes it is difficult to find neutral sources but it is worth the effort. 

Interestingly, I just talked with the nurse at my onc's office today as my calcium levels have been on the high side 10.5 and 10.2 - high normal being 10.2.  I was calling her to get my most recent lab result and it had come down, thankfully to 9.9.  I was breathing a sigh of relief.  I also asked her about my total vit. D level and she said that it was 59.  I am working to achieve a total D level of 100 or better.  D3 and total D are two different blood level measurements.  I have been taking 5,000 IUs of D3 daily for over a month and will have my D3 level checked in a few weeks along with my total D level.  It is important to use supplements under a doctor's care as some can interact with other medications you may be taking or they may be contraindicated depending on medical conditions.

I did read a research study done on a large Swedish population which concluded a link between hyperparathyroidism and breast cancer diagnosis.  There does certainly seem to be some connection.

nmol/l is the measurement used in Canada (and probably in Europe, the UK, NZ and Australia).  The preferred range is 125-150.

ng/ml is the measurement used in the U.S.  Anything over 50 seems to be acceptable.

Why the difference?  Haven't a clue !

Juli,

I'm curious...what do you use for Omega 3 supplementation?  I have very high cholesterol, and just don't want to be on a statin.  I need to be much more pro-active on the Omega 3 and 6, but am hit or miss at best. 

Thanks in advance,

traci

Rocket - Can you please give a link to the research you quoted regarding hyperparathyroidism and bc?

This is something I have long suspected.There are quite a few of us here with concurrent disease.

BTW - as far as I am aware, UK vitamin D levels are given in ng/ml too.

Un-frickin-believable~~~venting here.  I called my endocrinologist's office to get my bloodwork results faxed to me (I always do), they called back to say the doc said and I quote "Doctor wants you to know your bone density results are FINE"...HUHHHHHH?????  I said, uh, an almost 10% bone density loss and my oncologist AND primary doc don't agree that it's fine!  She said, oh, then you might want to discuss it with him next week...uh...duhhhh...YEAHHHHH!!!!    UGHHH!

I get SO tired of being our own advocate, am now awaiting the fax of my bloodwork as well.  Thanks for letting me rant.  I thought I had a good endo there...we WILL discuss!   ARRGHH!

~juli

Oh and yippy-skippy, my D total went from 30 to 46, D3 is 13 (ng/ml), D2 is 33, and it doesn't show what the 'optimal' levels are for those.  Don't think that looks too good though!  Calcium is 9.0 (that's good), PTH (parathyroid) is still very high (120, norms are 14-72).  Phosphorus is a bit low 2.4 (2.5-4.9 optimal).  oh yes, much to discuss.

notself - you are far from confusing - thanks for hanging in there. 

juli - breathe!  Hope your vent helped - that's part of our role here.

Enjoy friends.