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Link to Sandi Putnam’s Story :
Becoming educated and knowing the right questions to ask her surgeon helped Janet make informed decisions!
Posted: August 23, 2016 (15 minutes)
Guest: Janet Filippi
Host/Producer: Barbara from Parathyroid Peeps
Link to Pre-operative Questions
Calcification of heart valves has nothing to do with primary hyperparathyroid disease? This informed patient knew better!
Posted: February 18,2016 ( 32 minutes)
Guest: Barbara Johnson
Host/Producer: Sophie from Parathyroid Peeps
I have been diagnosed with hyperthyroidism. Has had surgery twice which were unsuccessful, sensipar didn’t work my condition is getting worse my endocrinoligist can not assist. My calcium is 2.76.PTH 145, vitamin d is up to 49 from 8 after taking calciferol
As Anja mentions, joining a support group may be something you would like to consider and would find helpful. You will find links to many of them on our website’s Resource Page. We are sorry that you are still suffering and wish the all the best as you continue to seek answers.
As Anja and Barbara said, a support group is really a good thing. I was relieved to learn that several symptoms were from hyperparathyroidism. It’s really a good thing when family and friends are supportive but most don’t know or understand what you face unless they have experienced it themselves. I sure hope you get some answers.
Hi Fazila – Do join some of the many facebook groups to get support 🙂 https://www.facebook.com/groups/HyperparathyroidismUKActionforChange/
is one of them. And there is also an US group. 🙂
It might be hidden in your thymus like the above womens did.
Hope you get well soon!! 🙂
I can relate to each of these stories. Can’t wait to become a “paratrooper”. I live in Santa Barbara county and am interested in being a spokesperson her on the central coast. I am a retired RN who was just diagnosed last Monday. I will be getting my CT scan to locate the tumor and then surgery with Dr. Larian. I am grateful for the support group on Facebook that led me to him. (Even though they locked me out of the group—-mistake maybe?”)
Will you have a focused surgery then if a CT scan is being done to locate the tumor? Will all 4 be checked? Sorry that you were removed from a support group. Just to clarify we do not run a closed FB support group but do provide information related to parathyroid disease on an open FB page. Wishing you all the best as you move forward in your journey to improved health.
Hi Barbara. Yes. All four glands will be checked. I have asked him to be sure that I will not have to go through a 2nd surgery later! I have read the horror stories and hope none of them happen to me. It has to be a CT scan because I cannot have an MRI due to the titanium in my back. I wish it were an MRI..much more accurate.
Hi Barbara, thankyou for sharing your experience which was similar to mine from symptoms to the initial lack of knowledge by drs to my having to seek a second opinion whilst suffering from brain fog etc. My outcome is I am post op MIP and like you have greatly reduced symptoms and feel I have my life back. I am in Australia and at one stage was seriously considering flying to USA for treatment so here too we have a long way to go re education of hyperparthroidism.
I am glad that by sharing our experiences, we can help one another. So happy to hear that your surgery was successful in Australia! Thank you for letting us know 🙂