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← Return to Hypothyroid & Postural Tachycardia Syndrome
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Hypothyroid & Postural Tachycardia Syndrome
Autoimmune Diseases | Last Active: May 4 7:50am | Replies (38)Comment receiving replies
Hi @donnaburch,
I'm thrilled to see that you've returned to Connect! Welcome back! Thank you so much for sharing and updating us about your daughter in your response.
I can only imagine that both you and @marcelle have had a rough journey of appointments and few answers for your daughters. I thought you might also like to read through these discussions on Connect:
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/
– Autonomic Dysfunction https://connect.mayoclinic.org/discussion/autonomic-dysfunction/
I'd like to ask our Mentor @kariulrich, who has POTS, EDS and MALS, and also fellow member @worriedmom18, whose daughter has the same conditions, if they have any thoughts or more insights to share?
@marcelle, @donnaburch, other than continuing to research, what have the doctors suggested as the next steps?
Replies to "Hi @donnaburch, I'm thrilled to see that you've returned to Connect! Welcome back! Thank you so..."
Hello,
My daughter was diagnosed with POTS and a year later with hypothyroidism. I am a nurse.
I would like to ask if anyone has experience with Dr Deborah Zelinsky at The Mind Eye Institute (Chicago) and using neuro-retinal imagine and glasses for POTS/dysautonomia? Some studies report complete remission of symptoms.
Best to all who suffer these challenging issues.
Marina
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Hi.
Nice to hear from you. Sadly medical support from my daughter is still very muddled.
She saw a private neurologist who reports she has damage to her autonomic nervous system as she had insufficent thyroid hormones between the age of 5 to 17 years which was discovered at 17 years. My daughter responded badly to levo and had a growth spurt like you would not believe and developed pots.
She has head pain amd flare ups daily. She was advised to go on to toprimate which has many devasting side effects. She will be trialing low dose naltrexone which has very minimal side effects and has evidence that is supports all her conditions of hashimotos, chronic fatique, pots and allergies. The prescription should be with us in 3 weeks.i am happy to report the outcome.
In addition i have taken legal action to get one of.her consultants to take responsibility and place a care plan on the emergency room file for her to have iv fluids and oxygen on the worst flare ups. 3 years on and the A&E wont do this with out a consultant input and none will do it stating another consultant should do it. She physically can not drink when in a flare up as it adds to it.
But despite suffering daily she makes me laugh everyday. take care all of those who are sufferers and those who have big hearts and are supporting those who are suffering.
Marcelle