Hyperparathyroid Concerns

I have been seeing an endocrinologist since last September and we have been watching my thyroid functions.  Additionally, the Dr. felt a nodule upon examination.  My TSH is running low 0.10-0.17 for the past 12 months.  My calcium is just over 10, my PTH is 165+ and my alkaline phosphatase is also high (125+).  I had an ultrasound on my thyroid in November.  A nodule was found plus a simple cyst.  I was told the simple cyst wasn't anything to worry about unless it began to affect my swallowing.  The nodule was more concerning, but was small.  There was no biopsy at the time due to the size.  

My endo mentioned at my appt. 2 months ago that surgery was a possibility.  I'm just wondering if anyone has had a similar experience and if so was surgery performed?  I'm taking my calcium and my vitamin D as prescribed.  I appreciate any guidance or feedback with dealing with this particular health concern.  

Thanks!

How is your D level?

My Vitamin D is 35...

Your vitamin D is within the normal range, but just barely.

Your body must keep calcium within the normal range to protect your heart function. If you either don't consume enough calcium, or don't absorb it well, your body will steal calcium from your bones to protect your heart. It does this by raising your parathyroid level. So, even though your serum calcium level is normal, you could be maintaining this level at the cost of your skeleton.

It's natural that your endo is looking at that nodule, which might - or might not - have anything to do with your elevated PTH. You could try improving your calcium absorption by taking more vitamin D to get your level at least in the middle of the normal range. Keep in mind also that what we call normal changes with improving knowledge. Way back when I had my pre-op labs, my D was "normal", which came as a great surprise because I avoid sun exposure like a  vampire (I sunburn fast). My level was 22, which nowadays we realize is low. Since my DS, with much improved D and calcium intake, my D level is in the 50's and I'm still working to get it higher because, like you, my PTH is high.

It can't possibly hurt you to raise your D level by taking more dry D. And it might help you. Or might not, but you won't know til you try.

Larra

I am going to make a few assumptions here....you are not on any thyroid medication, especially desicated?  if that is correct, and you are NOT on any thyroid medication, you have something going on, your very low TSH ****reated thyroid medication) TSH is used for identification, not treatment after thyroid medication is started,  calcium over 10 and PTH 165, dont worry about alk phos as that is typically high in DSers (just to be safe have dr order a bone specific alk phos)  your vit d is too low.  your calcium is normal, but calcium is misleading on it's own it will always be normal, unless you have one foot in the grave, calcium hemostasis is very strict, if your calcium is low then you pretty much have leached your calcium from your bones already,  calcium it must be tested with pth.  calcium is the most important mineral for your body, you body will sacrifice your teeth and bones in order to keep calcium levles normal in your blood.  calcium is only normal if your pth is normal, if your pth is high then you have an issue with your calcium and vit d.  I would suggest first and most important getting your vit d to above 75 (injection would work quickly) once you get your vit k at least above 75, but I like mine at 100, your pth will come down, then work on your calcium intake.  I would still want to know why my TSH is sooo low, request TPO AB and TG AB X2 for confirmation.  I understand you didn't fit the size criteria for a biopsy, but I would request one....let us know how you do

Thank you, Larra and airbender for the information.  I mistyped my Vit D level.  It is actually 85 and not 35.  I am NOT on any thyroid medications such as synthyroid.  My Vit K1 is at 87.  I saw the endo last week.  He stated that all signs are pointing towards Primary Hyperparathyroidism.  The nodule is hypo-echoic and vascilated. He has ordered a radioactive iodine thyroid scan which will occur on Wednesday, February 5th.  My osteocalcin is also high.  The endo told me that the osteocalcin and the alk phosphatase were both indicators of bone regeneration and bone turnover.  I am concerned by the extremely low TSH.  I'm feeling exhausted and generally not great.  My bones actually hurt.  I see the endo at the end of February and expect that I will be having surgery sometime in early March.  

Of course, all of this is complicated by my very silly skiing accident that has resulted in a torn meniscus and a grade 2 mcl sprain.  I've been in physical therapy for 3 weeks now.  I have a surgical consult on Thursday morning regarding my knees.  It's always something!  

Thanks again for your responses and I look forward to hearing additional feedback/thoughts if you have any regarding my situation.  

yes that makes sense, with that TSH and not being treated with desicated thyroid medication you are hyperthyroid, that can cause increased bone turnover and destruction (hypo and hyper both cause, in other words thyroid levels have to be optimal for bone health)  desicated thyroid medication will bring a TSH to below detection levels, so that is why I asked, sythroid will not cause that issue, but cause others, I particulary don't like T4 only RX synthroid.    All of my 5 specific bone markers are abnormal and have been for years, even before my DS--horray for me, I have osteopenia, i am doomed, both my parents have ostoeporosis and i am only in my 40's...get your thyroid in order....

PS...I also had my thyroid removed a couple years ago....thyroidectomy/DS is a tough combination, most endos dont know about thyroid issues, well not more than a GP, they actually focus more on diabetes....now throw in a surgery that is not done anywhere near where you live, and thryroidectomy, oh my gosh...what a nightmare...they are all afraid of how much they have to give you since you are malabsorbing RX, this will be an uphill battle... you think the DS issue is bad, nothing compared to no thyroid and taking so much medication that the insurance co put a flag on your RX and has to get clearnce from the ordering MD as to dbl check it is not a mistake...I have playing this game for years.... let us know how you do...

I don't have much experience with TSH, but I did have high PTH and I brought that back in range within 3 months by doing the following:

4,000mg Calcium (I like Vitacost's Bone Booster Complex which I take across 6 batches as you can't absorb much over 500mg batches 2 hours apart)
5-600 mcg vitamin K2
100,000 iu dry vitamin D
Strontium

I was already on 50,000iu of vitamin D and I'm slightly above range now, so I went back to 50,000 and I'll see how my labs are in a couple weeks.  I was also already on that amount of calcium and I was intermittently on the strontium, so the big differences were the D and K2 (I was on 300mcg of K2 previously).

I've just recently started taking magnesium citrate at a 2:1 ratio which will help your bones, so that means if you have 600mg of calcium you need to take 300mg of magnesium citrate (I snap one tablet in half to get to this number).  You may read that magnesium citrate makes you 'go', well I can say that I'm as constipated as ever so introduce it slowly and I'm sure you'll be absolutely fine (I'm working on the constipation with fat consumption and Miralax, so I'm OK on that front).

So sorry you're going through all that - I can relate!  I was diagnosed with hyperthyroid a few months ago and opted to try medication rather than having my thyroid removed or doing the radioactive iodine treatment.  Also had some nodules, but the biopsy luckily showed all benign.  The medication (methimazole) worked quickly and I began feeling better in about a week.  After taking medication for a couple of months, now I am hypothyroid and have begun gaining weight quickly.  Waiting to see my endocrinologist again, but from everything I read it looks like I'll probably need to eventually have the thyroid removed to avoid the cycling back and forth from hyper to hypo, as my hyperthyroid is related to Graves' Disease.