Possible hidden high calcium?

[Karen52]

I have been sick for YEARS. I am now dxd with secondary hyperparathryoidism. I believe it's really PRIMARY hyperparathyroidism. I CANNOT tolerate calcium supplements or D. Heart races and INCREASED body aches. My serum calcium is 9.1 but an IONIZED calcium test has never been done. I had severely low d before supplementation. My PTH is 58, creatine 1.0. I'm terribly dehydrated and just eliminate all liquids - THIRSTY ALL THE TIME. Small hard Lump under jaw. My thyroid is heterogeneous bilaterally with a suspected 3.5 cm nodule. However, I know that sometimes they can't tell a thyroid nodule from a parathyroid nodule on sonogram! My endo is not very helpful. He keeps telling me to take 1200mg of Calcium and I react terribly to it. Don't want a heart attack or stones or calcium deposits. He refuses to do an ionized calcium. I was up all night last night waking from sleep from heart jumping and pounding after taking 1k of calcium.

[AOLFAN]

I think you have primary HPT too and if you do, taking calcium or magnesium or high doses of Vitamin D can be very dangerous!!!! I see this post was last year so I hope you have been diagnosed by now. PHPT means you have a tumour and the only treatment is surgery - parathyroid.com

[Bama_Lori]

Karen....when u have high calcium and ADD D...that means u are absorbing more Calcium making your symptoms WORSE...trust me..been where you are which came first Lyme or HPTH...does it matter...NO...find a new Endo.

[Karen52]

Dear Dr. Lupo,

I was dxd with CLINICAL Lyme Disease in 2005. Could barely walk, talk or read. Had lots of neuro symptoms. Very weak. Treated with antibiotics off and on for a couple of years. Got better. Got off antibiotics then went down-hill. Low d discovered with routine bloodwork. Went on mega therapy with initial improvement - D now at 30. Intolerant of D at this time - symptoms explode if I take it. Heart races with calcium.

Now have 3.5 cm thyroid nodule - still waiting after over a month to find out if FNB or idodine scan.

Newly dxd with SECONDARY Hyperparathyroidism (have osteopenia) low d originally 12 - low mag 1.7 - high alk phos 144 (was 190) pth of 58 Serum calcium 9.2, Ionized calcium of 5.4 (lab scale 4.8-5.6) I think it actually may be PRIMARY HPT.

PROBLEM: D intolerant - ANY KIND OF D causes explosion of pain and cognitive symptoms for me, ( Interesting that steroids are bad for Lyme patients and D is really a secosteroid.) No one will listen to me. I have tried it over and over with bad results. They keep telling me to take 1200mg calcium a day and 1k of d or drink 4 glasses of milk per day. I've tried both and both create horrific side effects. Now I'm doing nothing and feeling better but worried. The doctor is just not listening and there is definitely a missing piece of the puzzle. But no one will admit that there can be a problem for some people with D.

I'm wondering if I should go back on Lyme therapy (could cause PTH AND THYROID isse ) or if maybe Primary HPT could have been my problem all along. By the way my father died of a paralytic disease unknown in 2001 after very long illness. Lung muscles stopped working. He had same initial symptoms as me. Do you have ANY idea about what my next step should be? I'm scared and confused and have no support.

Thanks,
Karen

[Karen52]

Oh, I forgot to tell you I have been treated in the past for chronic Lyme. Lyme can attack anything it wants to including the thyroid and parathyroid glands.

[Karen52]

Lori, It seems that the ionized calcium of 5.4 is kind of high normal on this particular  lab scale (to 4.8 to 5.6) so I am still confused. I tried taking magnesium supplements and then my little 400 mg of D to see if that would work and I almost could not go to work the next day. PAIN, PAIN PAIN and confusion - brain lapses in memory - terrible. There is a link between blocked D receptor and Lyme Disease or other  systemic illness. Seems D is not really a vitamin but a SECOSTEROID. ANY KIND OF STERIOID is disastrous to Lyme patients. It makes the bacteria proliferate. This is all I can imagine can be going wrong with the d. But no one wants to admit that D can be bad for certain people. After trying it again and again in different ways I know it is not in my head.

[Bama_Lori]

Dear Karen,

If your Ionized Ca is 5.2...that is WAY HIGH....  Mine is 1.2 with lab range of 1.13 -1.32 mmol/L

The supplements they have you on are probably making the diagnosis of HPTH impossible.

The body will lower things such as D to compensate for overaborbing more calcium....think about it.

Lori

[Karen52]

Dear Lori,

Well, it seems the missing link is MAGNESIUM! I am deficient. If you take calcium and d and don't have enough magnesium then the calcium can go to joints and veins and organs (kidney stones). This would cause increased pain when taking d. I'm still trying to find out what the ionized calcium of 5.4 means. I know it is highest normal but on parathyroid.com it only gives serum calcium on the chart. Funny because they state that IONIZED calcium is the best test to have. (My serum calcium is 9.4, IONIZED CAL is 5.4, and PTH is 58) My magnesium is 1.7, alk phos 144 and have osteopenia of lumbar spine. By the way, low magnesium levels precipitate ALLERGIES and chemical sensitivities which are hitting me extra hard right now. Glad I found this out but still not convinced that the parathyroid is ok. Any ideas on Ionized calcium evaluation thru parathyroid.com? For instance, is an ionizec calcium of 5.4 equal to what in serum calcium? Thanks for writing! Karen

[Bama_Lori]

Karen, I feel for you...get a new doctor and read my posts today!!!

Go to parathyroid,com and read ALL the pages there....it is in plain english not medical lingo.

You need an ultrasound of your neck...sonogram wont do. Your doctor is not ordering the right tests...get another doctor asap. You can find out more about your thyroid tumors at cancer.gov.

Eating more calcium will stop the parathyroid from pulling the calcium from your bones that cause all the problems.  DO NOT take the supplements, just eat more dairy than you are to control the symptoms.  I had to take myself off ALL prescription meds except for Nexium, Gas X, and Ultram for bone pain, but eating calcium works better than the pain pill.  When it has to pull from the bones, that is what causes the stones and osteoporis and bone pain.

Hope you can get the right tests soon.

Drop me a line if you want to chat.

Sincerely,
Lori