QC, test results..

[ilenerichardson]

QC,
I was just reading that you see your doctor the other day, how did it go?

Good, I hope.

[Queen Citrus]

HI!!!

So glad you asked! I got to tell my doctor a lot more about my new findings of info, but a lot of it is stuff she cant help me with. She hadnt recieved the test- results from the thyroid-ultrasound, so we sceduled a new appointment soon. Then I will have the test-results from the neck and head-scan as well.

I told her about the hypocretin deficcacy causing narcolepsy, and about auto-immune disorders - that made me think; rheumatological diseases! (Because the pains and all!) She said that at this point none of my blood-works points towards it, but she will have to send me to a specialist (endocrinologist). She said that she wanted to do it next time, when she has the latest test-results to send along.

So;
* it seems like it is not a auto-immune disorder (but we are not sure)
* It seems like I dont have any hypocretin- deficcacy - because I dont have any symptoms of narcolepsy other than loooong slep and EDS (some sleep paralysis - unclear on that).
* She leans towards the head-trauma at this point, and I will have the MRI of brains and neck in a week or so. (Finally I will get to see what goes on in that head of mine, cous I often wonder...*lol*)

I mailed to Mali Einen, the sleep expert at Stanford university, I was so anxious to get some answers!
Here is what I wrote;
"Dear Dr. Einen.
I am a 26 year old female from Norway. I am in touch with a hospital here, but feel that I havent had the tests and measurements required.
I have been diagnosed with IH. I have had test for sleep apnea - negative.
I had the MSLT - 7,5 min.
I had the Polysomnography test - I go stright into stage 4, and dont seem to leave it much during the night. I have also a lot of K- spindles.
My reaction time was a bit slow, but normal.
Besides this; what tests should be made? I think that it might have been caused by a mild traumatic brain injury, but my neurologist doesnt seem to want to follow up on the theory.
Could thyroxia - deficcacy cause the stage four sleep??
I need info on what standard tests and what blood level measures you make, so I could ask my neurologist. She is very inexperienced in the field, and they are about to start building a competancy centre, but lack some of the people and recources to do so. I need your advice. "

Her reply;
"I'm afraid I don't have specific answers regarding your situation.
There is a test that can provide you with a positive diagnosis of narcolepsy/ cataplexy (CSF hypocretin measurement) but this test will not rule out secondary N or IH. If you don't have C it is highly unlikely that this test will be positive or provide you with answers.
In your note you mention that you do not go into REM during your naps and your sleep latency is rather long at 7.5 minutes for N. It is not unusual for patients to be diagnosed with IH after a brain injury. Generally MRI's be done. "

I was so happy that she confirmed the head-trauma thing, I knew it to be true, but my neurologist just didnt have much belief in that. I have the right to change neurologist, so I think I will ask for another.

I also found a girl named Julie at the Fibromyalgia board on TAS! After reading her message, I thought that it couldnt harm sending her a message!

She wrote in her message on TAS:
"If you have been diagnosed with CFS or FMS, please, please get your hormone levels checked. I became sick at age 18 and remained sick for 10 years. Four years into it, I was diagnosed with FMS and a year or two later with CFS. Nothing I tried did much to keep me from feeling sick most of the day. For eight years I couldn’t hold a regular job successfully. The medical community didn't help me much until...recently a very progressive doctor found my thyroid to be enlarged, my adrenal gland to be hypofunctioning and my progesterone to be way low. Now with correcting those, I am almost completely better! (Still adjusting some levels)."

She wrote by mail;
"My symptoms were pain, fatigue, irritable bowel syndrome, PMS, painful heavy periods, infertility, cognitive problems, my tongue was swollen and the edge was scalloped looking, cold/heat intolerance, frequent colds/flus, weak muscles, I hated having anything close to my neck- like a turtleneck, unrefreshing sleep, hypersomnia, afternoon crashes, pressure in my head, and bloating.
As to why it happened I am not sure(...)I believe it is genetic.(...)
I think hypersomnia is related to pain. I slept a lot because my sleep was unrefreshing and I was almost thirsty for more. Also, because when I was asleep I wasn't in pain.(...)
Also I believe I read that interrupted stage 4 sleep (presumbly by pain signals) can induce FMS.
Many thyroid disorders are autoimmune.
Oh my God, they didn't treat you with anything to get the swelling down in your thyroid for that long!?! My tests were fine too (well the TSH- the inacurate test); I was treated with Armour Thyroid based on my ultrasound showing an enlarged thyroid. You need to seek treatment immeadiately. There is obviously something awry. Plus, when the gland swells the tissue can die, leaving less tissue to produce the hormone (from my limited understanding). Since they won't treat you based on a goiter alone, which to me is unthinkable, you need to have the doctor test your Free T levels- free T3 & Free t4 at least! It shows how much thyroid hormone is free for use.
Neck trauma can lead to an enlarged thyroid which can lead to a deficiency. It may have been a contributing factor in mine too.
I am not sure if you should get off the pill before hormone testing. I have never heard anything about that. I take progesterone/estriol cream for PMS. I don't trust the pill, personally. That could be what messed my and my sister's hormones up too, as we started the pill around the same age, and got sick around the same time.(...)
The tests that helped get me figured out after 10 yrs of being sick were: the ultrasound (thyroid), a 24 hr. saliva test from Great Smokies Laboratories, and a blood test for progesterone.(...)

So, my next appointment will be really meaningful, because I have got a lot more tests to ask for now. I am SORRY for my long message, but this informaton is REALLY meaningful for me, and hopefully for some of you others!! (sorry)
Citrus

[Queen Citrus]

Oh, my message is REALLY long...hope you guys dont fall asleep reading it!!!

[PillowGirl]

Wow, I have almost all of Julie's symptoms (except irritable bowel and I have clear N instead of IH).

I saw a Naturopath recently and she is referring me to a Reumatologist (who specializes in auto-immune disorders).

She is doing a blood test for my female hormones you give blood on the 3rd and 21st days of your cycle. The first work up tests for DHEA, estradol, estrogen and testosterone. The second looks at progesterone levels.

You do have to be off of the Pill as the pill is regulating your hormones instead of your body (I think it take 3 mos to leave your system completely).

DHEA is a stress fighting hormone produced by the Adrenal glands. Mine was on the lower end of normal, but we are only working on one condition at a time.

AS far as free T3/T4 and TSH goes my T3 is elevated and my TSH jumped a point and a half on the current 5 point scale (still in normal limits on that scale). My TSH is 2.69 and T3 is a bit elevated. She said that there is a bunch of discussion among endocrinologists and they are coming to the conclusion that the 5 point range is too wide- especially in young people (I think below 40 or 50 years old). The range that is thought to be more appropriate now is 0-2.
She also said that TSH is the most indicative factor of a thyroid problem (as the T3 and T4 fluctuate). If your TSH is over 2 then Hypothyroidism is occurring.

I don't know the scale for Hypertyyroid.

[Queen Citrus]

Thanx a lot, Pillow!!
I defenately dont wanna get off my pill, couse my pms is horriffic without it (I guess thats probarbly part of the whole problem!?!). I have read somewhere that hypersomnia could get worse around periods.. I always thought that my sleepyness was before I started with the pill. Probarbly "hypersomnia" caused by hormone deficcacy? Well, I really appreciated that info, and am now officially off pill. I cant wait to get more results!
I am so glad to have found you. Your info means a lot to me! Please keep me posted on how you are doing when your results are ready!
Citrus

[ilenerichardson]

What is the saliva test and the reasoning behind that testing?

QC, everyday you learn more information, this is so incredible. I am so happy for you. It will all come together soo.

Getting a second opinion is very time consuming but you are worth it!

I am finding it very interesting how these diseases/illnesses overlap and relate to one another!

[ June 08, 2003: Message edited by: sleepyartist ]

[Queen Citrus]

Thanks a lot Sleepyartist!!
I am so overwhelmed right now, but also excited and have new hopes!
I just told the clinic that takes the MRI scan that if they cant find anything wednesday, they will have to fabricate something, couse I have such high hopes!! *lol*

[Queen Citrus]

PS, I dont know about the saliva test, I was gonna mail Julie about it.

[ilenerichardson]

Hi QC!

I would definately go to a specialist, as they have a year or two or more of medical training than regular doctors. That is why they charge lots more money also, but that is ok, they have the answers and the experience.

From all you have written, it seems to point to thyroid issues as part of the problem. Did you look into Reynauds syndrome, one of our website links spoke about that. The website you listed that has the pictures of EEG's or whatever was awesome. I'm sure you saw your "spindles"!

It was interesting, what was written as common symptoms, one of the things I noticed was the mention of people with N, avoiding social interaction. That seemed like a predjudiced statement. Certainly it causes difficulty in social situations, but not all and not all the time.

The pill doesn't do a thing for pms or other moods at the "time of the month", but if I didn't take it, I'd be like Niagra Falls. Sure sucks, I wish I could sell my uterus, I'd do it in a second,... that would be a funny thing. The alternative, is stay on the pill and pretend you are somewhat normal. Every once in a while I go off of it to see if there are any signs of menopause, but its far off and no signs of it (I'm 48). I do notice an increase of EDS for a few days monthly, but our whole body is changing at that time, so why should anything remain stable then?

I know you have to get a million blood tests to rule out thryoid issues. I don't see the connection between EDS/hypersomnia and hormones/estrogen/progesterone/adrenal glands/immune disorders.

Also, did you see the website with the pictures, I mention above, said best treatment for hypersomnia is Provigil?

[Queen Citrus]

Hi!
Yes, I am a bit confused too, as I feel I have a zillion tests ahead, and also it is so much info that I am totally confused. In addition to my neurologist, I have the great doctor and she is open to any suggestions. She sends me to other specialists to have tests done, and the great thing about this country is that we dont pay for the specialists. The state does. So, now we take first things first. I`m gonna shave the MR on wednesday, for my neck and later the scull. Then I will start having the tests on the endocrine- system. It seems like the hormones could get unstable from a dash to the head, it could cause inflammatoriy to the hypothatlamus in some way. I also have had the Epstein-Barr virus (donnow when) and an other virus that could cause auto-immune- disorder. Some of the more rare auto-immune disorders attack the glands directly. As well as make the cells in the hypothalamus attack themselves... causing the hypocretin loss (and narcolepsy). Did I answer the question?? (I`m not sure if I understood it correctly)

It seems like the spindles is interrupted stage four sleep, could be pain-signals, but I will investigate it further.

Last night I dreamt that I was to the MRI test, and it showed lightning down the mushles in my neck, and a tap, like a ice tap going from my ear and into my head, only it was broken, and that was causing the pain. I really managed to scare myself, huh?

The web site with the explanation of the hypocretin causing N also concludes with Provigil/modafinil as the best meds for N. (From the trial w/the dogs *lol*)

I am seriously considering quitting the modafinil, because I get more severe headaches than before, and it comes when the drug leaves the body. I am so unsure about it, because that means I will go back to more EDS... What do you guys think??

Thanx a lot sleepyartist, you are a source of inspiration, and a good motivator. Thanx!