low tsh, t3 and acth with many symptoms

i was recently diagnosed with adrenal insufficency my acth was just a little low and my tsh was elevated. i have been on three different medications with none of them helping. then two weeks after my blood work they did a repeat tsh and t3 and the levels were low. i started with flu like symptoms for over a month that i could not shake, i continue to get sore throats then i started becoming extremly tired,unbearbly cold my hair was falling out and my blood pressure was dropping and i have fainted a few times, not to mention the chronic pain that i have in my body.also having trouble sleeping at night which sounds funny since i said i am extremly tired but seems like i get kinda wired in the evenings. i am not sure that AI is all that is going on. Any suggestions?

[rumpled]

Have you had any other testing like renin, aldosterone, dhea sulfate? ACTH test? Electrolytes?

Are you on replacements since you have been diagnosed with AI - did you have a stim test?

How are you taking your replacements?

Pain can be caused by cortisol rising and dropping but that is usually high cortisol.

[princesswick]

when i was in the hospital they said they did a renin but did not get the results. Did have a ACTH test that they said was just a little slow or low however you look at and my potassium was low. they started me on Florinef after the first trip to the hospital and i felt great for a week then passed out again and ended up back in the hospital with bp as low as76/38 the highest it ever got was 90/64. that is when they started me on hydrocortisone twice a day, with no effects so they changed it to cortief and did not have a effect. i was very tired could not get off the couch. The only time i had a bit of energy was when i was taking mu ultram for general pain which was weird so they put me back on florinef 0.1 two pills in the am and one and a half in the pm along with 20meq of potassium and 300mg of coq10 but i still felt the same staying awake all night cause i could not get out of bed till 1 in the afternoon and even when i took my sleeping pills i still could not sleep. they told me in the hospital that my throid was elevated but that they thought it was related to the steroid and that came from the endo. so then last week i asked the doctor to recheck it and my tsh and t3 were low. So on sun i took my last dose of anything and i feel the same as i do when i am taking the medication my bp is 98/64 i am still tired it seems like i can function for a feww hours a day and then i have to go back to the coach. and to go back to the begining i had been sick for over a month with flu like symptoms and no atb was treating it. then i started having really bad hip pains so the doc did a few test to see if there was inflammation in my body and it showed elevated levels and he put me on steroids for a week and about three days after that i was so lethargic that i could not even get out of bed and passed out that is when i ended up in the hospital. sorry long story just not sure where to go. i am staring to think that i am crazy. but i know that i cant make up lab test lol

[princesswick]

oh one more thing i am anemic lol

[rumpled]

Are you seeing an endo? How was your sodium? Do you crave salt?  Salt can raise blood pressure.

I have low BP too - I take florinef and salt to keep it up. My sodium and potassium are borderline so if I have an issue like fever or stress, I drop quickly in both (the usual is a raise in potassium but a few of us out there tank in both).

Why did they take you off the meds?

Use V8 with salt to raise your sodium and potassium if you feel awful.

Have they checked your pituitary on down? get copies so you know what is up..

[princesswick]

ended up in the hospital yesterday. passed out again but the strange thing was that my bp was 122/71 which is higher then its been in years. yes i do crave salt they had me on florineff but the doctor does ot think that it works right so he started me on cortef yesterday. i am having a thyroid scan on mon and a ct of my pituitary tues. labs showed cortisone level was low potassium was low along with my tsh but my t4 was normal but it was low last week so it seems like i am all over the place. today after being on the cortef for two days my bp was 89/62 and that is what it seems to run when i am on the other meds but on the florinef it seems to run higher. i took myself of the meds i was starting to think i was crazy and there was nothing wrong with me that it was in my head. probably not the best idea just dont know what to do. thanks for the advice i can really use it cause this is all new to me. up till now i have been completly healthy

[rumpled]

Keep high salt food around like pickles, broth/bouillon cubes and V8 around. I used Ramen (check the sodium content and nuke a bowl of that) as you once you raise sodium, potassium will rise as well - they are connected.

While everyone else needs a low salt diet - you need a high salt diet. I also use salt tablets - you can get them off amazon (I buy the 1000 tab bottle as I need them everyday).

The salt will also help you regulate the cortisol levels. A crisis is low sodium so you have to learn your new body and learn how to react and every *body* differs - so you have to learn if you need fluids, salt and cortef and how much of what will take you out of it. For me, I need fluids salt and if I can keep that down, I can use less cortef.

When I first had my adrenals removed, we literally had buckets placed all around the house! Now I am much better.

[princesswick]

thank you for the info it really helps. do you ever get back to normal or close

[princesswick]

couple other questions. How does this effect your weight? also what is more important the fluids or the food? i ask this question cause i had a vertical sleeve gastrectomy so my stomach is smaller then normal so if i fill up on fluids i can not eat or if i eat then i dont drink much. i have a problem staying hydrated most of the time it takes all i have to get two bottles of water in me which i know is some of the reason why my bp runs low

[rumpled]

I would say fluids - if you cannot eat much than the salt tabs are probably an excellent idea for you so you can push salt easily and raise your BP quick and get the sodium you need to stave off a crisis.

[princesswick]

Had a thyroid reuptake study and it showed consistant with hyperthyroidism after 6 hours.
It said it was 22% range 7-20%
Cortisone 1.45 range3.09-22.40 at 10pm
TSH 0.256 range 0.350-5.500
T4  0.98 range 0.76-1.79
ACTH 13 range 10-60 at 6am
also bilirubin direct 0.50 range0.0-0.3
sodium 139 range 136-145
potassium 3.4 range 3.5-5.1 these were all drawn on 3/17
on2/20 my ACTH was 32
iron and ferritin are also low along with my hemoglobin and hematocrit
my labs seem to ba all over the place and just dont know what it all means and the endo here does not see a problem currently i take cortef10mg in the am and 5mg at 4pm any comments

[rumpled]

Cortisone? Or Cortisol? why 10pm?
Your TSH is low - that is consistent more with central hypothyroidism...
With a low T4 - that is again shows more central...
ACTH is easily botched - was it a chilled tube? Spun right away? fasting?
Is he treating the low potassium?
Have you adjusted your diet or taking supplements for low iron?

Your replacement dose ... 4pm is late - do you have problems sleeping?

[princesswick]

it was cortisol and they drew it then cause i was in the er
i am not sure if they did the ACTH right heck i am starting to wonder about alot of things
I do take 20 meq of potassium and a multivitamin with iron along with a iron pill
he has me taking the meds twice a day but yes i cant sleep at night even with a sleeping pill
i usually get up in the morning at 530 take my first dose then fall back asleep till noon i cant seem to get up before then i am just always tired in the morning then i take my second dose at 4 that is when the endo said it should be taken

[rumpled]

Did anyone do an adrenal stim test before putting you on replacements?

Your sodium is high for having low cortisol - usually it is low... TSH is suppressed with high cortisol. Symptoms overlap. Have you gained or lost weight?

Have you had many cortisol tests, at different times of the day?

[princesswick]

is that the test that they draw blood then adm steriods then come back and draw again ? if that is then yes i did have the test they said that my results did rise but not highenough so the endo told me that if i did not have low blood pressure she probably would not treat me cause i am border line. mosy of my sodium results have been right on the border of being low but not sure if that if that is related to the fact that i have always used large amounts of salt. my weight fluctates on a regular basis between 136 to 144. i really think i have more of a thyroid problem then anything else. every evening i get heart palpations around 7 and start feeling anxiousand very iiritated cant sleep even with sleeping pill so who knows i go to the doctor tommm.  thanks again for the info

[rumpled]

Your salt habits are keeping you alive.... the body wants salt for a reason.

The blood pressure is controlled in the adrenals - the renin/aldosterone axis and you are feeding your the salt yours need too stay in tune. The heart palps can be causes by the low BP - have you seen a cardiologist?

Have they done any imaging of your adrenals?

[princesswick]

I have not seen a cardiologist recently. but am so confused now i weaned myself off the cortef and i am actually feeling better off it then when i was taking it but here is the confusing thing had thyroid labs drawn again and when the office called they said that my tsh and t4 was normal but my antithyroglobulin ab is high they are wating on one more test to come back. i am so confused blood pressure has been staying up still a little tired but able to function a lot more then i was. i am having all kinds of symptoms that sound like hyperthyroid heart palpations. hot flashes, hair falling out, starring off in space.
Also had a ct scan in nov when i had a cyst on my right ovary and they said my adrenals looked fine. so maybe it is not adrenal insufficency. but all i know is that i am starting to think that i am crazy and it is all in my head    thanks for all the advice

[rumpled]

Cortef and aldosterone can be seperate - so you may have just the need for the florinef and NOT the cortef (which can be nasty) and just need the mineralcorticosteroids - not the corticosteroids!

You could have hyperaldersteronism - so just find a doc who knows what that is...your adrenals can look find. Aldosterone is produced inside the adrenal, not in a tumor so there would be no change in the appearance. Really. Now for Cushing's or a pheo - they look for a tumor.

You may not have AI - but what you have needs to be treated!!!

[thanksgiving]

Do you by any chance have RH- blood? You sound so much like me I can't believe it.
I've had all those jumping around symptoms over the yrs with the bp, labs not showing up thyroid problems, fainting, brain fog. Yours sounds more severe than mine, but I struggled for so many yrs. It sounds like you are having autoimmune problems, which now I associate with the RH negative, and you can have problems and be positive, but have family members where there are offending proteins in your body that are causing confusion. I had a hysterectomy which further exacerbated my problems and have left me with chronic pelvic pain for which I am on narcotics, and even though the pain has been difficult to deal with the pain meds allowed me to work because of the opposite affect they had on me, which was more energy, (another characteristic of negative blood). I am taking Synthyroid, along with testosterone compound and small amount of estrogen (no ovaries, am 61) and those things have helped, but I am still having symptoms of hair loss, brain fog, no memory, depending on the day. I do believe there is more involved here with the endrocrine loop, which is complicated. I am not working now which makes it easier, but I still want to live. I also have spells where I can't seem to raise my arms, they feel like jelly, and my shoulder joints want to pop out. I have pain all over, on top of the severe pelvic pain. I am taking Lyrica, which amazingly helps with that, along with other pain meds. I feel for you, I could fill up the page with the symptoms I've had over the yrs. one of which was severe panic attacks. The thing that stumped the doctors (went untreated for thyroid) was that I was not over weight, I do have a healthy diet, but most people with thyroid have to watch every bite, but my weight goes up and down within 5 lbs. I use to have such severe fatigue and sleepy spells I could barely function. The Synthyroid has helped this, but mornings were the worst. Unfortunately my son is starting with the same symptoms (age 34) I think there is much more to this than one thing, but I am so tired of going to the doctors, and no more time than they spend with you, they are never going to figure it out. I just research away. I always thought I had an adrenal problem, but nobody ever wanted to test me for it. I guess certain labs didn't indicate the need, but something has always been wrong with me, and it is hard because everybody just thinks you are a hypocondriac (sp? my mind is gone) Keep posting, let us know.

[thanksgiving]

Just wanted to say that I always feel dry like the need to drink water all the time, I mean a feeling of desperation, not to ever leave the house without it. I drink about a gallon a day. My entire mouth and throat get very dry, and it is not the meds, or diabetes or any of the other things associated with the need to drink water. I've been this way for yrs. I use to swell real bad around my eyes, that is better since being on Synthyroid. As a matter of fact I remember swelling even as a child, but I do have allergies, thought that may be it. The last time I had labs done my sodium was a smidge low, but I figured that was from drinking so much water, and the doctor didn't say anything about it.