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Dr Lupo said Primary hyperparathyroidism =(
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Dr Lupo said Primary hyperparathyroidism =(

I asked Dr. Lupo if I should take my vitamin D due to the calcium and pth both being in the upper levels and he said this:

This is most consistent with primary hyperparathyroidism with high-normal PTH and Ca levels with subsequent low vitamin D.  This is unrelated to your hashimoto's and likely unrelated to the bone scan 10 years ago.  Vitamin D treatment is not the likely solution in this case --- people with vit D deficiency (and secondary hyperPTH) have lower Ca levels than you are reporting.

Now I don't know what to do ONCE again as my endo told me it was secondary hyperparathyroidism and that I should take the D.  I believe the only treatment for this is getting the parathyroid removed.  UGH.  This just *****.  I guess I'm always venting lately =(.  
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393685_tn?1325870933
Did you post your labs somewhere previously? If so, link it here for copy and paste them.

I'm confused too on how the whole parathryroid situation is pronouced here. Did your question to doctor Lupo discuss a parathyroid issue?

Sorry lost.... but posting the labs here could help.
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393685_tn?1325870933
I don't know if this offers clarity since I don't know alot about your patient history bout if parathyroidism needs to be ruled out or confirmed - labs should start with hyperpara or hypop defined here:

CALCIUM, Total Serum

Typical Ref. Range: 8.5-10.8 mg%

Optimal Range: 9.5-10.2 mg%

Serum calcium is not at all reflective of total body stores of calcium but rather reflects the metabolic and hormonal state of the individual. Ionic or free calcium is not only the biologically active form of calcium but reflects the amount of albumin and the blood pH. In acidemia, calcium becomes ionized and liberated from serum proteins. In alkalemia, more calcium is bound to proteins as well as precipitating out of solution. This may lead to extra-osseous deposition or kidney stones. The Calcium/Phosphorus ratio is an index of great value in detecting more subtle hormonal imbalances.

Serum calcium can not be properly interpreted without serum albumin level. Use the formula Adjusted Calcium = Serum calcium - serum albumin + 4. By far the most common causes of hypercalcemia are primary hyperparathyroidism, malignancy, and drug-induced. A PTH, calcium, Vit D, serum and ionized, albumin and phosphorus level drawn simultaneously helps classify the etiology into main groups.


http://www.ncbi.nlm.nih.gov/books/NBK24/

That's a large read on the demostration of parathyroid issues above. However you have Hashimotos also with high TgAb synthesis So a large roll of Vit D deficiency can play in that with parathyroid levels not correct.

Here is a patient story from here very similiar to what you have going on right now and she could be of great value to you. She isn't posting much here lately but should be reachable of you want.

Read some of her story =- good post.

http://www.medhelp.org/posts/recovery-after-vitamin-D-deficiency/my-story---parathyroid--thyroid-and-low-D/show/1184115

http://www.facebook.com/topic.php?uid=263254324207&topic=13276

Intresting here on this from Dr. Theador Friedman not agreeing with the primary paraT as an issue here with your labs indicating HIGH calcium with low D. He states calcium would be low with high PTH.

Therefore, patients with low
vitamin D levels will have relatively high PTH levels along with low calcium levels. This is
similar to patients with primary hypothyroidism having elevated TSH levels while having
normal thyroid hormone levels.

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393685_tn?1325870933
and it is clear that your autoimmune Hashi's can play a roll on these parathyroid labs and as I see it - could be responsible for this too.
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215461_tn?1331866365
Sorry Stella, I had posted this before and didn't want to post it again.  Here was my original question to Dr. Lupo.

I had my parathyroid tested and it came out that my vitamin D is only 11 (should be greater than 30).  My pth intact was 52 (normal 14-72).  My calcium was 10 normal (8.5-10.1).  My endo told me today that this is secondary hyperparathyroidism due to a vitamin D deficiency.  He put me on some high doses of vitamin D.  Now this is fine except that I was reading on Dr. Norman's site and he claims that if your endos tell you your calcium is high because of a vitamin D deficiency it is a lie.  He said taking the vitamin D will raise the calcium and can be harmful.  I guess the main concern is that with my calcium being borderline high, my pth should be near zero.  But from even what I look at on my own lab, it says that secondary hyperparathryoidism is caused from low calcium levels.  Mine is on the higher end.  I don't want to take the vitamin D and be in any worse shape.  My endocrinologist has been wrong several times and he barely listens to me.  I had to beg him for these tests, and he literally laughed at me for asking for them.  My hashimotos is really out of whack right now swinging from hypo to hyper.  I do have a lot of hyperparathyroidism symptoms, but I suppose that could be from my hashimotos as well.  Do you think that he is correct about taking the vitamin D?  I have faxed this information to my primary doc too, but she has not replied back to me yet.  I just want to make sure that the vitamin D would be the best treatment and not harmful.  Also I thought I might note that 10 years ago I tore a ligament in my knee.  In an accidental finding they found spots on my bones and gave me a bone scan.  They told me this was due to calcium and it was nothing to worry about after the scan.  Now I am wondering if this could be related to the parathyroid.  Thank you for your help,

Danielle
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215461_tn?1331866365
I'm so confused at this point I don't even know what to do.
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393685_tn?1325870933
Did you read Tamara's story on those medhelp links? Really she mocks you to a tee on alot of this.

Its frustrating. I feel a patient 2 patient comparison - especially on a copmplex issue like this could be valuable for you to research and identify things.

Let me know if you want her suggestions.
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Avatar_f_tn
I am only commenting because Stella personally alerted me to this question. I don't want to cause any ripples on this board because my treatment for Hashi (though I feel 10 Xs better than I've felt in a loooong time has upset some members here).

I really don't want to bash any websites here. I think Dr. Norman's work is wonderful, when it's warranted. I paid $1500 for him to tell me I was barking up the wrong tree and that I should get checked for Hashi. He was right. It was Hashi all along. I just wish my endo would have figured this out before I dropped a wad of cash. However, after reading his website I was convinced I had parathyroid disease.

People with Hashimoto's commonly have leaky gut syndrome and DO NOT absorb vitamins well until the leaky gut is healed, by removing food intolerances and a thorough gut repair. If you have Hashi, you most likely also have low D, B12, magnesium, Iron, Ferritin, etc.... and you will not feel well until those levels are at the top end of the ranges. Example, my doc says my D should be between 80-100 vs the current range of >35. I take between 7000-10,0000 IU D daily, the higher dose in winter and flu season.

Before my Hashi diagnosis, my PTH had fluctuated, reaching a 71, and calcium had fluctuated between 9.6-10.4.  

This whole parathyroid businesess started when my calcium was 10.2, PTH 67, D 18 and I was miserable. Despite an obvious goiter and nodules, no thyroid tests above the TSH were ordered. My TSH was always 'normal' so we figured I had parathryoid disease. I don't have parathyroid disease. Now that my D is in the upper ranges, I have  NORMAL calcium/PTH and do not feel sick anymore.

Checking those adrenal glands is crucial if you have Hashi. My cortisol levels are finally normal. With the exception of my DHEA levels, which are in the toilet right now, I feel pretty darn good. My doc called me Thursday and I'm going to his office to pick up my DHEA hormones. Hopefully, I'll get my afternoon energy back. It's crucial ALL Hashi patients get the 24 hour saliva test to determine adrenal function. If you have Hashi, you most likely have adrenal issues as well.

Otherwise, I'm exercising, volunteering at kiddo's school, building a successful career, loving my family, and just enjoying this second chance I've been given at life.

Take care...
:) Tamra
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215461_tn?1331866365
Thank you Stella and Tamra, that really does make me wonder about my own hahimoto's as your results are similar to mine.  My hashimoto's has been all messed up lately.  I do believe in the leaky gut syndrome as I have that too. I also have all the parathyroid symptoms, but who can really tell the difference.  It's interesting that Dr. Norman told you that you were normal, when his website clearly states the opposite.  I am being treated for hashimotos though as I have been for several years, so it seems odd that my D would go so low and that I would get this stuff all of a sudden.  That ***** you had to pay all that money to find that out.  I have been told so many things that I'm not sure what to do.  I have been SOOOO sick that I just don't want to make things worse.  Dr. Lupo seemed to agree with Dr. Norman, and now I have this information.  I did have my cortisol levels tested in a 24 hour urine test, and that came back normal (although I suppose I should request the results because my endo told me that and he is pretty much always wrong).  I probably need further testing too.  You had multiple tests!  I wish my doctor would have had the knowledge to order more.  This was my only test in this area so it's really hard to say if it was just a fluke and normal most of the time, or if it was actually running lower that day and normally runs a lot higher (which would make diagnosis clear).  My D is 11 so I am in definite need of something!  I told my family doctor all of this and she is concerned that my endo has been leading me in all the wrong directions and not helping me.  He is the only one my insurance would take.  She wants to help me, but doesn't know enough in that area so she somehow got me into the endocrinology department at the university of Michigan.  This is SUCH a blessing as I can have real endo's look at my case. Thank you so much for your input and if my next tests prove to be similar to this one, I will just try the vitamin D as it probably would not be indicative of a parathyroid issue. I wonder if I can get all my vitamin levels tested.  I also have gone gluten free since this all started, but it really hasn't made much difference in how I feel.  I gave up corn to as I seemed to have an intolerance to that.  Your protocol sounds similar to Dr. Kharrazian.  I read his book and found the information very helpful.  You just get to a point in which you don't know what to believe or where to turn?  I will definitely keep this in mind however, and unless these new endos tell me I have hyperparathyroidism, I will try to figure out how to get my vitamin levels under control.  Thanks again for your help.  
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Avatar_f_tn
Dani, I had to give up gluten, corn, tree nuts, flax seed and  all seeds in order to feel better. We are all different and you have to find what works for you. Some Hashis have dairy, soy, rice or potato/tomato (nightshades) issues as well.

I also found out that I was intolerant to the fillers in my Cytomel. I quit Cytomel. In the meantime, despite no T3 hormones, I am feeling much better. I am going to ask my endo for compounded bioidentical hormones.

You had a consult with Dr. Norman? He made me get three PTH/Calcium tests, weekly for three weeks before he'd consult with me, at which time he said I was barking up the wrong tree. When I asked him why my D was low and my PTH spiked if I didn't have parathyroid disease, his response was that two years ago it snowed in Florida. That, too me, wasn't a good enough answer. I have since switched endos who has told me that he sees many Hashi patients with low D and slightly elevated PTH/Calcium. The PTH and calcium go back to normal in his patients when he treats them with D. I respect Dr. Norman as a surgeon, but I must disagree with his site. Based on  my experience, low D can cause PTH and calcium to spike.

As far as adrenals are concerned, the 24 hour urine tests and the blood cortisol tests are a WASTE of time. The 24 hour saliva is the only accurate test. Adrenal testing and treatment is essential for Hashi patients.

I too, have read the book you mentioned and, yes, I do follow that doctor's protocol, which is why I feel so much better.

Low D can cause many health issues. I'm not surprised you feel so terrible. I wouldn't jump on the parathyroid bandwagon just yet. Despite what the website says, low D CAN cause PTH and calcium to spike. Honestly, your PTH and calcium don't seem high enough to me yet. You've only had one test, numbers in the normal ranges. I really think you should get some D vitamins and some sunshine.

I have to take btwn 6000 IU to 10,000 IU daily.

What about other vitamins? I take many vitamins with each meal, zinc, fish oil, probiotics, D, B12, iron, magnesium....

Also, make sure your frees are being treated so that both FT3 and FT4 are in the mid to higher ranges. Have you had gallbladder, liver, etc bloodwork? I also take a good quality fish oil for liver support since a healthy liver means good T4 to T3 conversion. :) T.  


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Avatar_f_tn
One more thing, if you say you've given up gluten already, just know that it must be 100 percent for it to do any good. Be aware of hidden gluten in vitamins, Motrin, etc. Tylenol is the only safe pain killer that I know of. :) Tamra
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215461_tn?1331866365
I don't really take medicine and I am really strict on the gluten.  I have been without gluten for about 5 months.  I think I have accidentally been "glutened" a few times after that, but I know it takes time for that.  I still have horrible digestive issues which made me question the parathyroid even more.  I have gerd so bad that I can barely lay down at night and literally all day long I have problems.  I have cut out tomatoes.  I tried cutting out dairy, but didn't notice a reaction to it.  It seems like it's the only thing I can eat so I really don't think my problems are diet related.  I also have problems with yeast rashes.  I strongly suspect adrenal issues, but I will have to get the saliva test!  I haven't had a good enough doctor to test me for anything!  I have heard so many different things about the vitamin D that it scares me.  Dr. Lupo from med help also told me that vitamin D would not be an effective treatment in my case.  I don't want to have a stroke or something, but then again vitamin D deficiency is HORRIBLE.  I really don't know which way to go.  I live in Michigan so it's not the best time to get sun, BUT I have been sitting by the window in the direct sun for as long as I can every day.  I am HOPING this will naturally bring things up a little until I can see another endo and know for sure what to do.  I believe everything you are saying, I'm just really scared to go one way or the other until I know for sure.  I wonder why doctors differ so much on the vitamin D issue.  Dr. Lupo is not associated with dr. norman however, so that is 2 points of view going that way.  How much of the other vitamins do you take?  I take calm powder (magnesium) for my panic attacks, but I haven't been sure of what to take elsewhere.  The bad thing about Dr. K's book, is he wants you to spend thousands of dollars going to doctors and he doesn't tell you how to treat things from the book alone.  I would be willing to do the stuff he mentions, I just have now idea how much or what to take.  Thank you so much for all the info.  I really do appreciate it, and I bet you are right that it is just a vitamin D deficiency.  Hopefully I can get a few more tests so that everyone can be certain.  Supposedly it can change from normal to bad.  I'm not sure this correlates, but when I went to get the blood test I was having a particularly good month.  Now things are horrible again, so I would love to get it tested now.  If the tests were going to be bad in relation to how I fee, they should be bad now.  I am supposed to hear back from the docs tomorrow or tuesday so I can make an appointment with better endos.  I pray to God I don't have to wait forever to get in.  Thanks again for your help.
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Avatar_f_tn
I don't see how this is parathyroid. Your labs were only done once and not out of range. Low D can cause a host of problems. Yours is REALLY low. If I was in your shoes, I'd be taking 10,000 IU daily until those levels were up. That is what I did.

Also, cutting out gluten may be part of it, but look toward other food triggers such as yellow corn. I had to get off my Cytomel because of the corn/other fillers in it. I know ARmour and some others have fillers that many of us can't tolerate. :) T.
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