Decreased Appetite, Low Grade Fevers, Any Unusual Symptoms? | MyNarcolepsyTeam

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Decreased Appetite, Low Grade Fevers, Any Unusual Symptoms?
A MyNarcolepsyTeam Member asked a question 💭

Since the hypothalamus gland is affected what type of symptoms have you experienced besides excessive sleepiness?

Not sure if all of my bizarre symptoms are directly related to narcolepsy but some might be.
The symptoms I am trying to figure out are :

Low grade fevers (10-15 per month)
Subclinical hypothyroidism with normal t3 &t4
Extreme chocolate milk craving (about 40oz a day)
No appetite, without weight loss , no thirst either

Very interested in others symptoms, sometimes patients can… read more

posted February 2, 2022 (edited)
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A MyNarcolepsyTeam Member

I am so sorry for not responding sooner. Life has been complicated. I hope you are doing better! I have multiple health issues including fibromyalgia, IBS, abnormal sinus tachycardia in addition to low thyroid and N1. Balancing the medication and treatment has been challenging. A few years ago I switched my primary care physician from a general practitioner to an internal medicine specialist and eliminated all other specialists except for my ob-gyn and then my pulmonologist. This helped immensely because my internal medicine specialist prescribes everything except the meds for N1. We discussed changes to my medications that eliminated some that addressed one health issue but exacerbated another. Internal medicine specialists take a systematic approach rather than just focusing one area like cardiology. I wish I had changed to this years before I did. My primary care doctor receives updates from the pulmonologist and factors that in my treatment.

posted June 23, 2022
A MyNarcolepsyTeam Member

Thanks Linda4, I will be having a follow-up endocrine appointment soon so I'll definitely bring it up. Has it been hard to balance treatment for different conditions? It seems pretty complex treating narcolepsy with stimulants while having other diseases. I just started Medical CBD to try relieving my constant muscle pain and seeing if it could help with any other symptoms, I haven't began any other treatment yet just researching alot.

posted February 6, 2022
A MyNarcolepsyTeam Member

How frustrating to have symptoms that fall outside normal. After 20 years of diagnoses, I finally have a pretty good understanding of my various symptoms. I hope you get answers soon!

I had hypothyroidism long before N1 was diagnosed. My t3 and t4 were always within the normal range but I suffered from extreme fatigue, no appetite, weight gain and trouble concentrating. My doctor ordered multiple tests for my thyroid and I was always in the normal range. She referred me for other specialists and they couldn't identify the issue. After about two years of misery, I developed a goiter. The scan showed that I had hypothyroidism. My t3 and t4 were still in the normal range. The normal range of t3 and t4 are based on averages or where most of the population falls. There are people who fall outside the 'normal range'. The goiter and scan showed I am one of those people just like you. Synthroid really helped my symptoms but did not eliminate the fatigue entirely.

posted February 5, 2022
A MyNarcolepsyTeam Member

I used to get low appetite when I'm sleepy during the day and hunger attacks at night when I wake up. This in the long run led to undernourishment. Thankfully, my neurologists have prescibed a specific diet which has fixed it. But what I know is orexin does not just regulate sleep-wake cycles. It regulates appetite, feeding and energy expenditure during the 24-hour cycle and does so by interacting with hunger and fullness hormones and blood sugar. Another thing which has happened to me is when I got covid (March 2020, the original Wuhan virus), I almost died. One of the strangest and scariest symptoms I got was not simply fever (which I also had), but.......hypothermia! My temperature went down to 32°C! And guess what? The hypothalamus regulates temperature too, probably through orexin. Ever noticed that you feel cold when you feel sleepy or hot when you wake up at night? You brain, actually your hypothalamus, brings the temperature (and blood pressure and heart beat rate) down to prepare your body for sleep and brings those things up when it wakes you up. The problem is for me it does it at the wrong time! Night-time awakenings followed by daytime sleep attacks and night-time hunger attacks followed by daytime lack of appetite. That's my norm if I don't follow the doc's instructions.

posted August 19, 2022

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