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Hello again.

Don't be discouraged, a low PTH indicates that you're headed in the right direction. What does your Doctor say? I would have to think that the 1000mg (is that right?) of calcium supplements daily, would have an effect on the numbers. How are you feeling? Keep in touch.
Yes I heard from Doctor's office today. They say I am headed in the right direction and my numbers mean the calcium pills I take daily are working. I do not need to take Vitamin D supplements. I haven't had a good week as my blood pressure is crazy. I have changed meds AGAIN.How are you this week? Is the muscle weakness better this week? Do you suffer from depression with this awful disease? Thanks for the post, let me know how you are.
The last three days have been great. I take a Citracal at bed time, then again at 7:30 in the morning. This makes my mornings way better as this was the worst part of the day. I then started a multi-vitamin at noon which has 185 mg of calcium. This has made a world of diffference over the last 3 days. My remaining 2 glands must not be providing me with the necessary blood calcium.
Prior to these 3 days, I had dwindled my calcium supplements down to maybe one a day. Just talking with you pointed me in the right direction. Thanks for that! Let's hope I can keep it under control.
I am so HAPPY you are feeling better! Great news. Keep in touch.
Just curious to know if anyone has had mouth ulcers since surgery. I am 7 weeks post op and this is my second round with them. L Lysine has worked for me before but unsure if I should take it with all the calcium I am taking. Anyone with this problem? If so what did you do? HELP
I haven't read or heard of this happening anywhere. Has this ever happened to you before? What about your overall health now? On a scale of 1 to 10 (10 being perfect) how would you rate your health?
Kodger99 wrote:

texgranny wrote:

Just curious to know if anyone has had mouth ulcers since surgery. I am 7 weeks post op and this is my second round with them. L Lysine has worked for me before but unsure if I should take it with all the calcium I am taking. Anyone with this problem? If so what did you do? HELP



I haven't read or heard of this happening anywhere. Has this ever happened to you before? What about your overall health now? On a scale of 1 to 10 (10 being perfect) how would you rate your health?


My overall health is about a 6, but improving. The mouth ulcers are about gone and yes I have had them before but NEVER this bad. Stress plays a big part. How is your health now after surgery?
texgranny wrote:

Kodger99 wrote:

texgranny wrote:

Just curious to know if anyone has had mouth ulcers since surgery. I am 7 weeks post op and this is my second round with them. L Lysine has worked for me before but unsure if I should take it with all the calcium I am taking. Anyone with this problem? If so what did you do? HELP



I haven't read or heard of this happening anywhere. Has this ever happened to you before? What about your overall health now? On a scale of 1 to 10 (10 being perfect) how would you rate your health?


My overall health is about a 6, but improving. The mouth ulcers are about gone and yes I have had them before but NEVER this bad. Stress plays a big part. How is your health now after surgery?




I would say 7 tops is what I'm averaging. It will be 7 months now since my surgery. I work full time and have 3 small children under 5 years, so I'd love to build on the 7. Not sure if it will happen on its own or is there something I could be doing? Trying to research whether or not I should be encorporating an exercice program? Not sure if I have the energy though.
Three children under the age of five and full time job. My goodness there goes your energy level. I am somewhat surprised a young person like you having hyperparathyroidism. It seems to hit us old gals more often. I think an exercise program would boost your energy if you have the time. I have been sick so long I am looking forward to getting out and walking. I am not overweight but could use the exercise . My doctor says it will help increase my energy level. I am now 2 months post surgery.
I'm 41 and I had those tumors for at least 10 yrs. I was talking to another post surgery patient online as well and she was told by her doctor that sometimes the dormant glands get a little oveactive post surgery. She was told that this can be regulated with medication. I've never come across this in any literature, have you?

5 weeks after surgery my PTH was 44. I though that was kinda high since I only have 2 glands left. Prior to surgery my PTH was 41 to 70. Pth is like a thermostat, it should lower itself ( say in the teens) when the calcium is at an acceptable level. Still waiting on blood work fro 2-3 wks past.
I am 62 and probably had the disease for 10 years or more. I have only one gland left as I had hyperplasia. I have read nothing about the dormant glands get a little overactive after surgery and med given for that.hmmmmmmm. I don't see how mine could be overactive. At my 5 week lab work my PTH was 9, but then it was only 16 before surgery. My doctor says this ok. I think 44 is ok since it is in the normal range . Look forward to knowing what your labs are now. Are you back to taking your calcium twice daily? I know I will never be 100%, because of my age, but I am so much better than I was this time last year or even three months ago. This disease is very hard on our bodies and robs us of quality of life. I am glad I had surgery and would do it again in a heartbeat. Would you? I am glad you are young and improving so you don't miss out in life the things I have. We must be our own health care advocates. Ask questions and demand answers.
I'm sure I am one of many who read your posts and look forward to your answers. You might look for an exercise class called Strong Women, Strong Bones. I do it at my church and senior centers and such places often have it. It's meant for women "midlife and older" (Isn't that tactful?). The exercises are simple and you use hand and ankle weights. You start where you are comfortable and work up as you feel ready. I think it really helps.

I haven't had surgery but am probably headed that direction. I'm one of the ones with high PTH and normal calcium. I do have osteoporosis.

I am so thankful to you people for sharing your experiences.
If you need surgery don't put it off. I have osteoporosis also and I had two fractures in three years that led me to making my decision for surgery. I am now working with a physical therapist and getting stronger in my arms and shoulders. Guess you are a rare one too with high PTH and normal calcium. Do you have lots of symptoms? Choose your surgeon wisely and don't be afraid to ask questions. Good luck and keep us posted on your decision.
I was ready to hop a plane to FL as soon as I found out my PTH was high but my endocrinologist does not agree with Dr. Norman. She thought that the high PTH was secondary to Vitamin D deficiency. I've read and read and read and that does seem to be a traditional view. I've been taking magadoses of Vitamin D and it now tests normal but PTH is still high so now the Dr. thinks that maybe the PTH really is the primary problem. I do sleep better and have fewer pains in my chest.

I think that I don't have as many symptoms or they are milder since my calcium is normal. Besides osteoporosis I have acid reflux which is helped quite a bit by Prevacid but I don't want to take it forever. (You know, they are trying to learn whether those medicines affect the bones - just what we need!) I have some other digestive issues which haven't changed with the Vitamin D. I also have Trigeminal Neuralgia and according to Dr. Norman it could be connected to hyperparathyroidism. No one knows much about that either.

I go on vacation in a few days and will see the Dr. when I get back.
What are your numbers on PTH level? Just curious. My endocrinologist didn't agree with Dr Norman either. I saw two different doctors. I think when you are not a textbook case they are not sure what to do, but won't admit it. Hope you are able to manage your pain with Trigeminal Neuralgia. I also had acid reflux and no longer need med after my surgery. I also had vitamin D deficiency and they had me taking mega doses when my calcium was so high. I am happy I didn't have a stroke. My last lab report my vitamin D was low and my family doctor wanted me on supplement, but Dr Norman said it was ok. Do you mind me asking your age? One other question..do you take anything for osteoporosis? Thank you for your post and have a good vacation.