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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone Else Have Hormone Issues Possibly Caused By Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
Holland, MI

I’ve been noticing a slow decline in my health and many are hormone based. I’m seeing an endocrinologist in a couple weeks.

September 16, 2022
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Reactions

Answer Summary

Members responded to questions about hormone issues and narcolepsy by sharing their own complex experiences with multiple autoimmune... Read more

Members responded to questions about hormone issues and narcolepsy by sharing their own complex experiences with multiple autoimmune conditions, including hypothyroidism, Hashimoto's, Sjogren's syndrome, and premature menopause, with several noting that narcolepsy itself is autoimmune and often appears alongside other autoimmune disorders. Many members discussed their medication challenges, particularly widespread Adderall shortages forcing pharmacy-hopping or switches to alternative stimulants like Ritalin and Modafinil, with some finding relief while others struggled with generic formulations that no longer seemed effective. A recurring theme was the compounding fatigue from overlapping conditions, the frustration of declining health despite treatment, and the importance of advocating for oneself with doctors who truly listen.

A MyNarcolepsyTeam Member

Marcia, that's good news your Adderall is working. None of the generic Adderall is working for me, for almost 3 yrs now. It has had negative impact on my life, but I've got new docs that are listening so... Ne er give up hope right?
I do wish there was a way to file Class Action suit against the drug manufacturers. I know they've changed the formula or the potentcy!

Take care. Talk soon.
Adriana

September 20, 2022
A MyNarcolepsyTeam Member

Hello, your question is interesting. I too have noticed a decline in my health. I know that I have my two autoimmune issues: narcolepsy 1 and a renal malabsorption issue similar to Gettelman's syndrome. I'm holding out for the third autoimmune syndrome. I'll be thinking about you and the findings. Take care!

September 16, 2022
A MyNarcolepsyTeam Member

I have not had any issues with hormones, What I have noticed is that I now am diagnosed with other autoimmune syndromes. hypothyroid and Sjogren's. Very strange

August 8, 2023
A MyNarcolepsyTeam Member

Hi, yes my hormones have been causing my health to decline as well. I have Hashimoto’s and premature menopause at the age of 36.

July 13, 2023
A MyNarcolepsyTeam Member

So now I have a third autoimmune syndrome. Sjogren’s. And it is not fun I have dry eyes, dry mouth and excessive fatigue. it is destructive to the bodies, tissues, and organs.

July 13, 2023

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