? relationship between thyroidectomy and narcolepsy

[slpdrew]

My mother is 59 y.o..  She had a thyroidectomy this past spring.  Surgery/recovery was uneventful.  She is back to full activity - walks, swims, bikes most every day.  Approx one month ago she began to experience what i can only describe as narcolepsy (fits of overwhelming tiredness/fatigue).  She will fight sleep while driving or nod off as the passenger. She will fall asleep in church and at dinner.  She feels that this was not a gradual change for her.  She complains of feeling fatigue all of the time.  She is currently on a diet to lose about 30 lbs - under direction of a dietician/nutritionist.  She has not had any recent med changes except for medication following the thyroidectomy.  This med has not been changed since the surgery in the spring.   Can this be related to medication or hormones?  Should we consult the endocrinolgist or a sleep specialist?  Should she have a brain scan?  Who is the best specialist to consult?  

[scarlet37]

I had a Thyroidectomy in 12/06 diagnosed with Narcolepsy in 2/08. It's important to understand all the aspects of each disorder because sleeping and thyroid disorders have similar symptoms.

The sudden onset of sleepiness could be related to many things. Most importantly if this is something new has she had her thyroid levels checked recently? Does she take a multi-vitamin? Does she wake up during the night? Does she snore? Does she have an issue with gerd?

I do have a mild breathing issue ever since my TT and was told by both my endo and sleep doc that singing would help tighten the tissues in my throat which in turn would help keep the cut muscles in check. Once muscles are cut or torn they cannot grow back together so it's important to tighten the tissues. I hope that makes sense to all I don't know how else to explain it.

Narcolepsy has 4 main symptoms - EDS ( Excessive daytime sleepiness) , Cataplexy ( involuntary muscle weakness usually following emotions - can be as a simple as a chin drop or as extreme as a full body collapse), Hypnagogic Hallucinations -( vivid and occasionally frightening dreams they really seem real!), Sleep Paralysis - a temporary inability to move - your brain gets confused and forgets to turn the rest of your body on- i find this to be more annoying I guess i've gotten used to it.)

Of course with any disorder there are also other symptoms that effect us so I've only posted the 4 main ones. I certainly hope you can help her find the cause of the fatigue - I understand it totally and can completely sympathize for anyone with it.

Best Wishes~

      Teresa

[Barb135]

I can't say that being on the med has made everything ok.  My energy still lags (especially when it's almost time for another B-12 shot), I do eat well and exercise, but still manage to gain/retain weight and have some other issues.  I've never had any type of surgery on my thyroid, which makes me lucky so far, I think and probably makes it  somewhat different for me from a lot of you.  More tests, etc coming up next week.  Will see what happens.  

[mtnlife]

Sounds like your nodding off was related to your hypo status since your better on thyroid meds.  My doctor tells me all my levels are "perfect" but maybe the smallest amount of level change can create a big impact.  From what I read on this forum, people are so sensitive to thyroid replacement.  I have never really experienced any significant side effects from my surgery except the "narcolepsy" type symptom.  I have great energy, I eat well, don't gain weight (too much) etc.  Seems like thyroid replacement is a black box.

[Barb135]

I had something like that before I was diagnosed hypo and started on med.  I would would almost nod off while sitting at stop lights, etc and it was quite scary.  I still get very tired and can nod off most any time I sit still for more than a few minutes, but nothing like it was.  Whenever my hubby and I go anywhere together, I generally have him drive and usually before we've gone very far, I'm out like a light.  I'm very careful to make sure that I don't drive unless I'm very alert and as long as I have things to occupy my mind/body, I do ok.  

[mtnlife]

Interestingly, I've posted about this issue a few times but no one has ever experienced it.  I too had a TT and about 3-4 months post surgery I would fall asleep very easily.  My kids would tease me because I could be talking to them one minute and then out the next.  My doctor wanted me to do a sleep study but I haven't yet because of insurance issues.  Narcolepsy has to do with onset of sleep and REM cycles, there is a strong genetic component (my father probably had it).  However, accidentally I found a cure.  I was going through a divorce and my regular doctor gave me Cylexa (antidepressant with anxiety relief) which cured the quick sleep onset problem.  I have since gone off the Cylexa and the sleep problem did return but no where near like it was.  Prior to taking the drug, I was stopped once by the police for swerving (as I dozed off).  I have not taken this thing lightly because of the potential consequences.  I suggest talking to the Dr. and rule out any other issues but a sleep study is the only way to diagnose the "too" rapid onset of sleep.

[Thypatient]

[Petty typo corrections.  That's: '...what testing, if any, is needed...' and 'You're kind... .'  I still hate that there's no 'Edit' button.]

[Thypatient]

I don't know...but my initial thought is to have a closer look at the diet aspect of all this.  Maybe she is losing a nutrient in the process of attempting to lose weight.

Is she under the care of an endo?  I'd actually start there.  That dr would probably be able to help determine what's going on and what testing, of any, is needed.

I think it's right to have this looked into.  Your kind to purse an answer in your mother's behalf.

Good luck.