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Avatar universal

High PTH, low (but normal) vitamin D, normal calcium

I am in the military and consequently have to conform to what doctors they permit me to see. I have been to one endocrinologist in my area and due to my lack of confidence in the doctor and the ridiculously bad administration within the office, I requested to be switched to the only other endocrinologist in the area that I am permitted to see. I saw the new endocrinologist this week and was put on 50,000 units of Vitamin D per week and told to take 500 mg Calcium at breakfast and 500 mg at dinner. The first endocrinologist I saw from Oct 09 until the switch this week and had me on 50,000 units of Vitamin D per week for 3 months and then switched to monthly, but also had me on Actonel 150 mg once per month.

Here are my stats:
- 41 year old female; 5'11" 143 lbs
- Ceased having my period around 37 years old
- DEXA Aug 2009: Lumbar spine T-score of -2.7; Left hip T-score of -1.6
- DEXA Aug 2010: Lumbar spine T-score of -1.7; Left hip T-score of -1.6
- Parathyroid scan in Oct 2009: Immediate images demonstrate radiotracer uptake within thyroid gland. there is minimal radiotracer uptake in the upper mediastinum, likely blood pool. 2 hour delayed images demonstrate two tiny foci of slightly increased radiotracer uptake, seen on the oblique images inferiorly to the thyroid gland bilaterally, questionalbe parathyroid adenomas. Questionable foci of increased radiotracer uptake inferior to bilateral thyroid lobes, parathyroid adenoma uptake cannot be completely excluded.
- Blood work Oct 2009: FSH 4.9; LH 0.8; PTH 125; Calcium 9.5; Bilirubin total 1.0; Alkaline Phosphatase 74; AST 28; ALT 17; Vit D, 1,25 (OH) 2, total of 34; Vit D3, 1,25 (OH) 2 of 34; Vit D2, 1,25 (OH) 2 of <8; Prolactin 1.7; all other work normal ranges
- Blood work Nov 2009: Vit D, 25-OH, total of 28; Vit D, 25-OH, D3 of 28; Vit D, 25-OH, D2 of <4
- Blood work Jan 2010: Calcium 9.1; PTH 170; Bilirubin total 0.6; Alkaline Phosphatase 52; AST 28; ALT 22; Vit D, 1,25 (OH) 2, total of 39; Vit D3, 1,25 (OH) 2 of 39; Vit D2, 1,25 (OH) 2 of <8; Vit D, 25-OH, total of 18; Vit D, 25-OH, D3 of 18; Vit D, 25-OH, D2 of <4
- Blood work May 2010: Calcium 9.9; PTH 112; Bilirubin total 1.2; Alkaline Phosphatase 58; AST 26; ALT 16; Vit D, 25-OH, total of 34; Vit D, 25-OH, D3 of 11; Vit D, 25-OH, D2 of 23
- Blood work Sep 2010: Calcium 10.3; PTH 127; Bilirubin total 2.3; Alkaline Phosphatase 77; AST 35; ALT 17
- Blood work Jan 2011: Calcium 9.9; Bilirubin total 2.0; Alkaline Phosphatase 75; AST 28; ALT 20; Thyroglobulin antibody result <20; Thyroid Peroxidase antibody 69; TSH 1.429
- Blood work this week: I have not seen the results. I was told my PTH was high and my Vit D was low.

Other symptoms:
- Fracture in 5th metatarsal Oct 2009 took almost a year to heal. I had been a long distance runner prior to this injury of 40+ miles per week.
- Reoccurring stress fractures in both feet as I have tried to walk and SLOWLY jog. Currently have a stress fracture. When I can't run, use a recumbant bike and go 33 or more miles on it per day, 6 days per week.
- Cholesterol is typically around 220 with triglyc around 60, HDL around 80 and LDL around 115.
- BP typically around 94/66 with PR around 40.
- Degenerative discs at L1-L2 and L4-L5 appearing in last couple of years as well as SI joint displacement.
- Recently diagnosed with Raynaud's Phenomenon
- Leukopenia
- Organic vegetarian (with occasion seafood) and minimally to non-processed foods.
- Sinus bradycardia
- Occasional heart palpitations
- Increase in joints popping/making noise
- Lack of energy. Often do not feel sleepy when it is time to get up, but feel worn and fatigued.
- Sleep hard first half of night and then super light the second half
- General feeling of my body being "old"
- Hard time concentrating.

Does the new doctor's treatment of 500mg Calcium at breakfast and 500mg Calcium at dinner and 50,000 units Vitamin D once per week sound right and reasonable?

Thank you in advance for any input.
6 Responses
Avatar universal
Holy [email protected] Why haven't they done a Sestamibi scan, identified those parathyroid tumors, and yanked those puppies?!? Check out a website called Parathyroid.com. You will find every one of your symptoms in there -and probably a few more. ~MM
Avatar universal
Actually that's what I generically listed under stats as "Parathyroid scan in Oct 2009". The paperwork says: Following intravenous administration 23.5 mCi Tc-99 sestamibi immediate and delayed at 2 hours images of neck and upper meiastinum were obtained.

What is listed up in the stats section are the findings after doing that.
Avatar universal
So why haven't they scheduled you for surgery? Parathyroid tumors never get better. You may need to take this issue to a higher authority because this is slowly killing you. You may even need to seek medical help outside of the military.
Let me tell you a little of my story...I began having female hormone issues at age 36. By the time I was 38, they were much worse. I was having hot flashes, painful irregular periods, increased PMS, severe water retention (I'd gain 10 lbs or more the week prior to my period and would have pitting edema in my legs), and I felt old and tired. I was blown-off with "Dear, you are premenopausal, this brings everyone in..." No thyroid tests, nothing other than the basics. Fast forward to age 42. The female stuff was a bit worse, birth control pills made me feel worse, I'd had 6 kidney stones in 2 years, I was urinating every 1/2 hour 24/7. I hurt everywhere -especially my bones and joints. I had unbelievable muscle twitching, palpitations and irregular heartbeats, constant headaches (woke up with one every morning), I couldn't think very well, I had intractable heartburn, and my gut had "ghost pains" constantly. (Sorry if TMI) My bowel movements were 3-5 days apart. By this time I'd seen the Dr multiple times (very out of character for me) in a short period for the abdominal pain and other, again, I was blown off with a "constipation, you need to eat more fiber and drink more water" diagnosis.
Finally, I had a whopper kidney stone that put me in the hospital. I was told my blood calcium was high and it needed to be followed up. After I recovered from the kidney infection caused by the stone, I began to look up causes for high blood calcium, and Lo, in Parathyroid.com -there it was. The site could have used me as their model example. I returned to my Dr and insisted on endocrine testing, including the PTH levels. She was refusing until I made such a big stink, she agreed just to get rid of me. It came out as 165 with my calcium at 11.1 at the time. Her excuse afterwards? 'Nobody EVER tests positive for that'. Puh.
Two weeks later, I'd been whisked through an endocrinologist, many scans, and had surgery by a good parathyroid surgeon. It was unbelievable how much better I felt. I felt young again. I didn't hurt. No more kidney stones, no heartburn or headaches, my PMS and hot flashes went away. that was 4 years ago now and, despite some unrelated hypothyroid issues, I am doing fantastic. My bone scan shows I have reclaimed what I'd lost.
I can only wish the same for you. for your sake, Please, for your sake, if you can't find someone who can help you within the military medical field, seek someone outside. Go up the chain of command and be insistent. Your medical care is going to be a ton more expensive if you have a stroke or heart attack from this. I KNOW how frustrating this can be. Drag your medical records with you. You might even consider getting a "second opinion" from the outside, and presenting it to your endo. That is your right. Good luck. ~MM
Avatar universal
Both doctors said the PTH scan was fuzzy and rather inconclusive. There is no other higher authority to take it too at this point. Both of these doctors are civilian doctors because we have no endocrines here at our base.

I have heard the same thing about being perimenopause. But they did run thyroid tests last month (results above) and said there was nothing to be concerned about there.

The first doc tried to put me on birth control pills but the cramping was crippling. I had that issue many years as I use to get my period too. My bowel movements are also spread way apart despite the high number of veggies and fruit I take in. No kidney stones or stuff like that. But my focus and concentration is horrible. I can't remember 2 sentences back when I read something but I have always been like that and told I had ADD before ADD was a popular diagnosis. Never took meds for it though.

My calcium level has been pretty much in the normal range throughout all of this. That is the perplexing thing. And they have been regularly testing my (high) PTH as the results above show.

When I switched over to this new endocrine this last week, it was with the secondary purpose of getting a second opinion.

Thanks for sharing your story...
Avatar universal
Hi,
If your PTH level is high (which it is), your calcium should be low, not mid-range. They should never both be high, or low at the same time. The parathyroids' only job is regulating the level of calcium in the blood, and when the calcium is too low, the PTH rises and signals the bones to release calcium. As the calcium rises to normal levels the PTH is supposed to scale back. Right now, the PTH is erroneously signaling your bones to give up calcium even though your blood level is normal. The body gets rid of excess calcium easiest by urinating it off. When your body (kidneys) can't keep up any more, the calcium builds faster, and the higher concentration gives you kidney stones.
Somehow your poor body is still compensating, but at the cost of losing your bones in the process.
From the description, I believe you had a poor-quality Sestamibi scan. If the image was fuzzy, it was poor. Mine showed all of my parathyroids clearly and the bad one looked like a lightbulb. At least get another scan done. Please look at the Parathyroid.com site (hyperparathyroidism). It explains this way better.
By the way, I wasn't perimenopausal and all my female stuff returned to normal. Good luck...~MM
Avatar universal
Listen- I'm really tired of some people here trying to promote Dr.Norton's site, - Parathyroid.com. And you've been diagnosed by this person here on the forum?

I too had hyperparathyroidism for years and also had a problem absorbing Vit.D. I had a Sestambi scan also. Once I got my Vit.D level up around 70 my PTH came down to 19. I also felt much better and had more energy. Most doctors are okay with low Vit.D because the numbers on "within" normal limits. There are other doctors that say your levels should be 70 for the optimal health benefits. Search the web or ask other doctors. This is what has helped me.
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