Oh Doug....
If only I was in a position to answer this question.... It is not yet given for HPTH sufferers here in the UK (the 1-34 variety) yet - only for end stage osteoporosis sufferers. My Consultant has grave doubts about the 1-34 variety though due to its short half life but feels the 1-184 with it's much longer half life is much better. This (the 1-184) is supposedly to be made available to HPTH sufferers soonish though so am keeping my fingers crossed. Some HPTH people I know on the 1-34 say it is wonderful for clearing the foggy head that comes with HPTH and gives the person a lot more energy but these people have only been on it a short while and my consultant says it's for further down the line that the real problems start on the 1-34. In his words "If you think you have a poor quality of life now, be a subject in a medical study and go on this drug and you will know what a low quality of life really is."
Tusti

Hi

I am in the UK, and have to have my blood done every 3 weeks for the rest of my life. I am very very poorly with hypoparathyroidism and am frequently admitted to hospital.

Dear Pink,
What caused your HPTH?
Love+Light,
Tusti XX

The Doctors don't know - all I do know is that my Consultant has told me that I have it much more severe than most people

Both my husband and my daughter have hypoparathyroidism. My husband was diagnosed 4 years ago after a tour to Afghanistan under harsh conditions with no medical available. He also has many health problems from his exposure to the war.
My daughter was comfirmed a few days ago by Mayo clinic.

My husband has a extensive calcification on his basal ganglia.

Our daughter has been having headaches for years. We ruled out a tumor several years back and now we know what it is. Her calcium levels dropped to the 6's and now are in the 7's. Her pulse has been as high as 160 at rest...
In spite of everything she has done very well in school but has been very tired. On Friday she will graduate as Valedictorian of her senior class of over 460 students. She will also give a speech in front of 5000 to 10 000 people.
Nobody understands what is wrong with her. I was told that if she wasn't in the hospital, she must be ok...I controlled myself and tried to explain.
I hope you will all be able to help us deal with this. To tell you the truth I am scared but I have to stay strong for my family. I want to protect my child but what can I do? I guess the fact that I breast fed her for 2 years and 2 months must have helped her in her childhood. What can I do now?
Nobody seems to understand as it doesn''t apply to their family and as it is not mainstreamed. I am upset....At this rate if anyone else tells me it is nothing, I will never talk to the again.

In answer to your question, I was selected for clinical trials on the new human parathyroid hormone (I-84) made by NPS. Unfortunately I could not complete the trials be/c I could not easily absorb the dry calcium required by the trials. My celiac disease prevented this. Anyway, I have been on Forteo, teriparatide, off and on for three years. I am able to inject myself if I develop a hard tetany. I will say that the patients who took the human parathyroid hormone in the trials did very well on it and I have done well on the Forteo...I experience good calcium levels and control.

I have taken Forteo, 1-34, or also called artificial hypoparathyroid hormone. I use it for emergencies but not regularly since it is allowed only for osteoporosis on a regular (2 year) basis. The Forteo is great. It eliminates the cramps/tetany within 20-30 minutes after the shot and stablizes my calcium. I have experience no side effects, other than the stress of its cost. I am waiting for the 1-84 (NOT 1-184) which is the human parathyroid hormone, now to be approved any day by the FDA. The human parathyroid hormone will be called NatPara, produced by the NPS pharmaceutical co. One of your articles states that the only real effect of being hypoparathyroid is the lower calcium levels. This is false...another real consequence is the possible loss of kidney function due to the high calcium levels and the inability of rocaltrol or calcitriol to perform all the functions that the parathyroid performs. Also loss of teeth enamel, irregular heartbeats, foggy brain, etc. etc. Doctors do not know about all the consequences and are often ignorant about Hypoparathyroidism. So the HypoPARAthroidism Assn is having a survey done, confidential, to obtain the experiences of hpth patients and use the info as a means to educate doctors. You can enter the confidential survey at this link: https://www.hypopara.org/about-hpth/clinical-trials/survey.html

For our benefit as hpth patients, please take this survey. Thanks

very good summary
thank you for sharing