NIH study PHPT

Pseudohypoparathyroidism
#1

I don’t know if anyone on this forum lives in or around MD, but I have been a patient of the National Institutes of Health for approximately 12 years because I have Pseudohypoparathyroidism.

Perhaps the more people they have to study, the better care we’re able to receive.

Just my two cents.

#2

Do you have to be from the east coast to take part in the NIH?
What does “being a member” do for you? What do you get out of it?
Thanks,
Margaret

skathe php-cpt4409@lists.careplace.com wrote:

#3

I was accepted into the study with my daughters a year ago though we haven’t made it to MD yet. I don’t know if they are only working on type 1A or if they are working on all types. If you want the email address of her secretary for more info I will send it to you though.

Denise

#4

Dear Denise,

Yes, I would like the address of the secretary of the
PHPT study, please.

Thank you,
Margaret Spielmann

— dwolfskill php-cpt4409@lists.careplace.com
wrote:

I was accepted into the study with my daughters a
year ago though we haven’t made it to MD yet. I
don’t know if they are only working on type 1A or if
they are working on all types. If you want the email
address of her secretary for more info I will send
it to you though.

Denise

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#5

Margaret
The Dr is Emily Germain-Lee. She is wonderful. She origenally worked under Michael Levine before he left for Cleveland Clinic if I remember right.
Here is her direct email.
egermain@jhmi.edu

#6

THANKS!!
I’ve just e-mailed her.
Has any Dr. told you to have your daugher avoid any
foods?
My daughter has so many allergies (environmental). She
tested positive for foods in general, too.
She’s having a LDA (low-dose antigen) shot in a week.

Margaret

Margaret
The Dr is Emily Germain-Lee. She is wonderful. She
origenally worked under Michael Levine before he
left for Cleveland Clinic if I remember right.
Here is her direct email.
egermain@jhmi.edu

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#7

Here is what I have been told in reference to meds/food etc. Do not take foods with Calcium or Soy 1hr before taking meds or before 1 hr after taking meds. Take the meds the same time every day. I have a list of foods that are better for the thyroid at home but I am at work right now. I will post them later.

Denise

#8

I’ve always been instructed by my Endocronologist to make sure I take my Calcium & Vitamin D WITH food, so it can be absorbed better. I also make sure I take those several hours after my Levothyroxine.