waking up at 1 am with continous adrenalin like surges

[soxfan]

ric- the endo did say that my cortisol level was in the 'gray' area. the am levels at the lab that tested me are betweeen 5-24. so even though my is always around 12-13 mark she still wants me off them. i did have an ACTH test done in august and the starting level at 10:30 am was 8.5 and in an hour it went to 18.5 so she said my adrenals can produce.
I still have huge problems with my body handling stress mostly emotional or social along with working. the emotional stress knocks my body so hard i actually feel like i am going to die.
anyway...i might try and have my doctor treat this instead of going to a new endo since they seem to go by numbers and not symptoms. I know she really messed up with my thyroid because i am still gaining weight (14) pounds now in a short period of time..i had a bad feeling about her from the beginning and i should have trusted my insticts and gone somewhere else.

justy-i didn't want to be on the steriods long term unless i really needed them. the endo had told me i couldn't have the ACTH test done unless i was down to a low dose so i had to taper down so i could get it done. i still am not certain i need to be on them because i never have had a straight answer..the doctor i am seeing next week does saliva so i think i will do that one again. i must say i did have difficulty on some of my taper doses especially going from 10 to 7.5. i had to do that one 3 times....as if we all don't have enough problems. i am really happy going off them gave you positive results. thanks...

 

[rlc]

hi soxfan the problem with all the cortisol tests is unless the result is either very high or or very low it is always a grey area, cortisol is relesed when stressed, it's part of the fight or flight reaction that happens in the body, so if you get your morning cortisol done when your relaxed, your going to get a very different result then you will if something as simple as stubbing your toe when going into get it done happens, same with Saliva tests, and 24 hour urine collections, if you do the 24 hour test when very relaxed your going to get a very different result then you would if you spent the time watching scary movies, the ACTH is the only one that can really tell, i'm certainly no expert on it aparently they are often very difficult to interperate i would advise getting a second opinion on it just in case. if your last endo thought it was fine, i'm slightly confused as to why you've been on cortef, cause if you don't have an adrenal problem it can cause alot of problems!! i understand that you would want to get these emotional symptoms under control, but i think seeing an endo (hopefully as well) would help, from what you've been saying it does sound like you have a thyroid condition that hasn't been treated properly, which could be accounting for alot and possibly all of your problems, and some possible major issues going on with the cortef, and a good endo is the best place to start with these issues all the best

 

[soxfan]

I was put on cortef 4 years ago because the results of my saliva test were bascially flatlined. I was also thought to have Lyme disease at the time too. Anyway i can honestly say that i didn't think the cortef made much of a difference for me but stayed on it because my doctor wanted me to. he felt that as long as i had an active infection then my adrenals would be stressed.
The cortef has caused me to have bone loss but i am not sure of what other problems...
I am getting a second opinion at my new endo's appt on the 17th. The problem with the ACTH was that the blood was suppose to be drawn at 8am and they didn't do it until 10:30. I am not sure how much of a difference that makes.
I agree that just taking one cortisol test in the am makes no sense. I am going to try and get the new endo to have me do one in the am and then in the afternoon. that might show how much i actually have in the pm.

yeah the thyroid is definataly a problem area and i am working on that. i am positive not all my problems are caused by that though because when i first became sick in 2004 i didn't have any thyroid problems at all..this is a recent problem. thanks for taking the time to write. i will keep you posted.

oh and the doctor i am seeing on monday does believe in saliva cortisol!

 

[*GG*]

My Dr uses Neuroscience and I will do 4 Saliva test during the day, 1 upon rising and another just before bed. I will also be collecting the 2nd urine in the morning. Sounds like your test is different, I wonder why?

 

[soxfan]

I used neuroscience 4 years ago when i first had it tested with Dr. D. i did do the 4 times a day one and that is why i was prescribed the cortef. my endocrinologist only does the blood draw at 8am for cortisol. she said she doesn't believe the saliva tests are accurate. so when she had me do the ACTH she told me my adrenals could respond to stress because the cortisol doubled in an hour. that is why she is tapering me off since she said i don't have an adrenal problem. i only did the urine testing for neurotransmitters like serotonin, ephiderine, etc....

 

[Noah_Scape]

I recently had a whole week of staying awake, and I was alert and active too. Just no sleep. That came after I had a severe reaction to an anti epiliptic drug called Carbamazapine [Tegradol]. Have you started taking something like that? Gabapentin maybe?

Does anyone know if this is a possible effect of these drugs?

 

[rlc]

I recently had a whole week of staying awake, and I was alert and active too. Just no sleep. That came after I had a severe reaction to an anti epiliptic drug called Carbamazapine [Tegradol]. Have you started taking something like that? Gabapentin maybe?

Does anyone know if this is a possible effect of these drugs?

Hi Noah_Scape heres a link to lots of information about side effects of that drug, plus other drugs it interactes with, i don't know if your on other meds, but if you are you should be able to find all the information you need here http://www.drugs.com/cons/carbamazepine.html hope this helps all the best

 

[SaraM]

soxfan,

I had all your symptoms including viberation and adrenalin rush. I took 20 mg of Cortef for over a year which eventually solved the problem. My adrenalin level is still low, something around 10 in the morning.

 

[rlc]

hi soxfan sorry for late reply i've had flu, agree that it looks like ACTH was done at wrong time, so might have to be redone, if it more then doubled it can indicate that it's a pituitary problem so see if new endo can sort that out. Has anyone checked Aldosterone? i would think that if cortef hasn't lead to any improvement then it's unlikly that you have adrenal insuficiency, and if it's caused bone loss it sounds like you are getting more then you need.

I don't know what thyroid tests you had at the start, but i have heard of someone who was diagnosed with CFS for years, had lots of thyroid tests done which where always normal, but eventualy they managed to get a test done called reverse T3 which showed it was a thyroid problem all along.

Hope your new endos brillant and can sort all these issues out for you! All the best

 

[soxfan]

ric- yes..i hope he is brilliant too. i went back and saw the doctor that originally treated me for lyme and he is doing ALL the thyroid tests himself. even though i am seeing the new endo in 2 weeks he wanted to see the test results himself. he also said the nodules should have been biopised...
I don't really think i have an adrenal insufficiency problem. more likey i might be having withdrawl symptoms. the doctor told me it was not pleasant to come off cortef especially when i had been on it for a long time.
i have never had aldosterone tested but my doctor is testing testosterone along with all the thyroid function tests. i will keep you posted on the results. i have been feeling especially terrible this week... sorry you had the flu and hope you are feeling better. i had a sinus infection a month ago and it wiped me out for a week!

Kim

Sara- i still am having the vibration but like i said above i am thinking it might be withdrawl symptoms. cortef never really helped me or at least i don't think it did. my doctor is doing a cortisol test next week so he can see for himself what the reading is.

 

[rlc]

hi soxfan glad to hear your doctors doing all the thyroid tests, sounds like they know what their doing, i mentioned aldosterone because some people can just be difficient in that and it causes alots of problems, there's a good chart on this page which explains all the different tests for adrenal problems, http://en.wikipedia.org/wiki/Adrenal_insufficiency it sounds to me like alot of your problems have been caused by being given cortef which it looks like you didn't need. hope it all gets sorted soon all the best

 

[soxfan]

ric- i am thinking i probably needed it for a while but not 4 years! now i am also waking up with sweats at night which i haven't had in 3 or more years. i don't really know what is going on with me. i can't keep guessing or else i will make myself crazy. can't wait to see what the tests have to say...i am going to mention the aldosterone to my doc and see if he will test that too. i think whatever is going on feels like it is hormonal or stress related. thanks for the link on the adrenal testing..

 

[rlc]

hi soxfan been doing a bit of reading on cortef, found a good site with all the side effects etc, when people come of it they can get Drug-induced secondary adrenocortical insufficiency, which means taking the cortef has surpressed the bodies natural ability to make the right hormones, which can take a long time to come right, so you might want to ask your doctor about that. it also says There is an enhanced effect of corticosteroids on patients with hypothyroidism so if you have had a thyroid problem it may have been making the side effects worse. This sites also got links to other pages with information about drug interactions, so if you've been on other meds might be worth a look. here's the link http://www.drugs.com/pro/cortef.html all the best hope it all gets sorted soon

 

[soxfan]

thanks ric...i will be talking with the doctor after my blood tests are done. the article was great!

 

[rlc]

thanks ric...i will be talking with the doctor after my blood tests are done. the article was great!

Glad to help, i'm getting tests for endocrine problems myself so reading alot about it. So keep posting if you have anymore questions, chances are i'll have just been reading about it. all the best

 

[soxfan]

ric- i printed out the article about the adrenalin surges from the other thread and it sounds exactly like what i am experiencing right now. i am having continous adrenalin surging during the day too and i know once it stops i will crash hard. this has been going on for a week and i have never in 6 years had it last this long. not sure if does have something to do with my messed up thyroid. i just had my blood drawn this morning so i should hear from the doctor later on in the week.
i think i have just been pushing and crashing for too long and with my other problems going on it has finally floored me. not fun.....
thanks for all your help.

 

[rlc]

hi soxfan could be thyroid causing the problem sounds more hyper then hypo here's a link about thyroid symptoms http://thyroid.about.com/cs/basics_starthere/a/symptoms.htm might be something to do with effects of cortef hard to know until tests results come in. Try and rest as much as possible, hopefully it will get sorted soon. There's lots of conditions that can cause these problems, if your taking any other meds or supplements it could be side effects from them. If you want to post what your on i can look them up for you, i've got lots of informatiion on these things on my computer. There is lab tests to measure adrenalin their called serum catecholamine and 24 hour catecholamine test here's a link about catecholamines http://en.wikipedia.org/wiki/Catecholamine so if these symptoms continue it can be checked to see if it an over production of adrenalin. hope your lab results arrive soon and throw some light on whats going on. All the best

 

[soxfan]

hey ric- i am not taking anything at the moment other than calcium, fish oil, alpha lipoic acid and vit D. for medications i am only taking levoxyl, cytomel and cortef. these things i have been taking for years. i am trying to rest but with the feeling of adrenalin rushing through me it is hard. it actually feels as though i am being continously pumped with it. i usually have this when i have overdone but it usually goes away within a few hours. i have no idea what has caused this week long torture.
the doctor said i could possibly have hashimoto's and so the thyroid can go from hyper to hypo fairly quickly. my tsh levels change weekly so who know's. i will let you know when i hear anything from the tests. the catecholamine thing is really interesting. i will have to write that one down to ask the doctor about...thanks for all the great info you are supplying me with!

 

[rlc]

hi soxfan got a whole lot of information on your meds for you, it's going to take a bit of time, and i've got to go out so i'll spread it over a couple of posts. i take it the calcium and vit d are for the bone loss, hope that your getting your calcium blood levels regularly monitored because this combination can lead to hypercalicimia! however looked up levoxyl and it shouldn't be taken if you have a thyroid disorder called throtoxicosis our an uncontroled adrenal problem which you might have because of cortef withdrawl link http://www.drugs.com/levoxyl.html it can also have alot of side effects link http://www.drugs.com/sfx/levoxyl-side-effects.html it has interactions with other meds link http://www.drugs.com/drug-interactions/levothyroxine,levoxyl-index.html?filter=2&generic_only= some of which are for calcium not sure what brand of calcium your on but here's a link to calcium carbonate interaction and how it effects thyroid http://www.drugs.com/drug-interactions/calcium-carbonate-with-levoxyl-464-0-1463-868.html For Alpha lipoic acid it says to get professional advice before taking it if you have a thyroid disorder and it does have side effects link http://www.drugs.com/mtm/alpha-lipoic-acid.html be back with more information soon, but it looks like your going to need to get your doctor to sort out all your meds and supplements for you all the best!!!

 

[soxfan]

wow...thanks so much ric. i can't read it all at once since i am having trouble just sitting at the computer but will go through all the information. i am not getting my calcium levels monitored at all..my pcp is terrible and i am trying to find a different one. the doctor i am seeing again who treated me before will probably take over all that. i can't wait to find out my test results. i am kind of hoping they are wacky and that would explain this last week of horror...