HealthBoards (
-   Addison's Disease (
-   -   I have alot of strange symptoms and alot of tests.... (

SDube 04-04-2005 12:12 PM

I have alot of strange symptoms and alot of tests....
I'm hoping someone can help me here, as I am at my wit's end with all of this....

I'm going to list my symptoms, and then the relevant tests that I have had and can you tell me if this sounds adrenal related? I'm hoping you can help me out because I can't get a doctor to test me properly. Also I am already hypothyroid (.05 levothyroxine for the last 5 years). My thyroid has just been tested and it is normal (TSH 1.36).

Here are my symptoms:

feeling like an ice-cube, especially hands, feet and nose, sometimes have to use hot water bottle all day, but can also get VERY hot in an instant. I sleep with 2 pairs of socks, nightgown and housecoat

Postural hypotension (very dizzy on standing up) confirmed by doctor

blood pressure has been as low as 76/37.

Rapid, pounding heart beat on standing up or going upstairs, or doing just about anything. Find if I eat alot of salt and drink 2-3 glasses of water, my heart pounding, lethargy and shortness of breath go away

shortness of breath

morning nausea and lack of appetite - mostly after period until ovulation

constipation and then I'll go 4 or 5 times in one day, diarrhea by the end of the day

lost 16 pounds over the last month and a half, and eat like a horse

EXTREME fatigue on some days, others it's better, very sleepy alot of times (which is UNUSUAL for me)

balance is off

brain is fuzzy

very thirsty, mouth is dry, tongue gets sore, eyes are VERY dry, skin is very dry (lotion 3 times a day)

seem to have a very dry throat - hoarse alot

peripheral neuropathy - burning in hands, arms, feet, legs and tinglies all over body including face

muscle twitching and cramps and weak muscles especially hand grip

roaming joint pain

on and off hypoglycemic episodes when I haven't eaten or when I've eaten something sugary

sorry (TMI) but I'm losing my pubic hair, some armpit hair and lots of hair on my lower legs. Also the private parts down there are quite dark and my husband doesn't call me pale anymore, used to be a standing joke with us

Not all of the above symptoms happen at the same time, they will come and go in groups.

Now, I have had a random cortisol blood test at around 4:00 pm (not fasting) and it was 483 Range was 170 - 540 which is in the high range.

Any ideas at all??? They've been testing me for Sjogren's disease because of the dry eyes, mouth and skin, but so far all tests are negative.

Please help me out here, I'm terrified of being lumped into a Chronic Fatigue Syndrome group where I don't get any help or medication, but only brush-offs.


WandaB 04-04-2005 01:46 PM

Re: I have alot of strange symptoms and alot of tests....
Hi Sherry, Sorry you are having so many symptoms. Some of it sounds like addisons & some like thyroid. Here is some info on testing for addisons.

[COLOR=DarkRed]Diagnostic Testing for Addison's Disease[/COLOR]

TEST 1: Electrolyte profile:

OBJECT: To determine if the patient exhibits a normal serum (blood) sodium and potassium levels.

THE TEST: A blood draw followed by automated determination of sodium and potassium levels as well as other standard blood markers.

NORMAL RESULT (will vary somewhat from lab to lab): Sodium 135-150 mEq/L; Potassium 3.5-5.2 mEq/L

PRIMARY ADDISONIAN: Will show significantly below normal values of sodium and a elevated (above normal) levels of potassium.

REASON FOR ABNORMALITY: Low or no production of aldosterone from the adrenal cortex. This steroidal hormone regulates our mineral balance and is called a mineralocorticoid. Primary Addisonians lose sodium and retain potassium. Abnormal values here, in additon to physical signs and symptoms, require the next test.

TEST 2: The ACTH stimulation test:

OBJECT: To determine if the patient's adrenal glands can respond to the ACTH message from the pituitary to increase cortisol production in the adrenal cortex.

THE TEST: The test is usually given first thing in the morning when normal cortisol levels are highest. Blood is withdrawn from the patient to establish a baseline (No instructions regarding necessity for fasting). The patient is given 250 micrograms (ug) of ACTH (Cortrosyn, Cosyntropin, or Synacthen) by injection in saline at one time. Blood is drawn at 30 minutes and/or 60 minutes and the serum cortisol level is determined.

NORMAL RESULTS: Normal pre-injection levels of cortisol are 5-25 ug/dL (138-690 nmol/L). The value should double at 30-60 minutes with a minimum of 20 ug/dL (552 nmol/L). PRIMARY ADDISONIAN: There will be no or little increase in cortisol levels upon ACTH injection. Notes: It is stated in several places that a single test of cortisol levels, or even 24 h urinary levels of cortisol and its metabolites, are NOT DIAGNOSTIC! In the normal individual cortisol levels are seen to pulse. Low cortisol production in either the serum or the urine after ACTH stimulation is diagnostic of Addisons disease.

SECONDARY ADDISONIAN (Pituitary malfunction): Low cortisol production can be seen if the patient has "functional adrenal cortical atrophy" due to prolonged absence of normal ACTH secretion. This type of patient would not show the typical hyper-pigmentation of primary Addisons.

REASON FOR ABNORMALITY: Due to autoimmune, or other destruction of enzymatic (biocatalytic) machinery of the adrenal gland, there is no response to ACTH and no production of cortisol and other adrenal steroids necessary for life. If this test gives normal results and the patient has other signs and symptoms then one of the following tests is required.

TEST 3: The insulin stimulation test.

OBJECT: The purpose of this test is to determine whether the patient's pituitary gland can produce ACTH in response to an insulin stimulus. Abnormally high insulin will drive the patient into hypoglycemia and stimulate the production of ACTH from the pituitary. This test is called by Dr. Krasner (JAMA, 1999, 282 671-676) the traditional test to determine the integrity of the messenger pathway between the hypothalamus, pituitary and adrenal gland. He stresses that it should be given by qualified medical personnel under the direct supervision of a physician, because insulin shock can result.

THE TEST: Baseline blood levels are taken. Insulin is injected into the patient until the blood glucose level falls below 2.2 mmol/L (40 mg/dL). Blood is drawn at intervals up to 90 minutes and the serum cortisol is measured. (This is simpler than determining the ACTH level).

NORMAL RESULTS: A normal patient will show an increase of cortisol production (due to increased ACTH production of not less then 550 nmol/L or (20 ug/dL).

DISEASED PATIENT (SECONDARY ADDISONS): If there is no or little increase in cortisol production as measured by several blood draws after this test is given, then, according to Dr. Krasner, the patient has significant hypothalamic-pituitary-adrenal (HPA) axis impairment.

REASON FOR ABNORMALITY: Basically, either the pituitary or the hypothalamus glands are not showing normal physiology. There can be several reasons for this. The pituitary may have lost its ability to make ACTH due to autoimmune impairment. The hypothalamus may not be sending the right signal to pituitary. There may be a pituitary tumor. Finally, the HPA axis may be suppressed due to sustained therapeutic use of steroids like prednisone which is given to those with chronic inflammation of various kinds. Asthmatics sometimes get in this situation.

SDube 04-04-2005 02:20 PM

Re: I have alot of strange symptoms and alot of tests....
Thanks, I've had one CBC showing normal sodium and potassium:

sodium 138 Range 135 - 145 mmol/L
potassium 4.8 Range 3.3 - 5.1 mmol/L

And the normal Cortisol draw in the afternoon.

the above tests were done on a day when I felt really good, does that make a difference? Also, the sodium is on the low end and the potassium is on the high end.

Do you have any insight?


sadie-mae 04-04-2005 04:23 PM

Re: I have alot of strange symptoms and alot of tests....
Hi Sherry,

So much of your list sounds sooooo familiar-even some of the weirder symptoms. Sadly, I haven't a clue what is wrong with me and it is driving me nuts! I am awaiting Sjogren's testing myself, among the rest of an autoimmune workup....but so far everything has been normal (in the past).

Has anyone tested you for diabetes? Alot of your symptoms could fit into that category as well as Addison's. High blood sugars can definitely make you feel fuzzy headed and dry-mouthed (from dehydration). You would lose weight and still be quite hungry because your body can't utilize the glucose it takes in. Dehydration will also lead to the constipation.

When you have been tested for thyroid problems, have they ever checked a free T4 at the same time?

I would agree with Wanda that you sure sound like a potential Addisonian and testing is definitely in order. In fact, in sounds like you need a full endocrine workup, pronto!

Have you been able to see an endocrinologist yet? Or is the issue that you can't find one who listens? I certainly understand the plight of finding decent medical care. Is there any chance the doctor who is doing the autoimmune testing is receptive to looking further at hormone issues? Is it a rheumatologist? They are often quite helpful since their realm crosses into so many other specialties.

PLEASE keep us posted...I am particularly interested in your progress because I really strongly relate to your story. I'm sorry for your illness and not having answers-it is draining enough just to be sick without having to fight to get answers, too!


SDube 04-04-2005 04:40 PM

Re: I have alot of strange symptoms and alot of tests....

Wow, someone else with the same symptoms. I'm sorry to hear you are feeling as bad as I do, it's not fun to say the least.

I know that all of my symptoms don't fit with Addisons, but then so many of them do. Yes, I've been tested for diabetes, and even have a blood monitor at home, because my brother has Type II diabetes. Since I am hypothyroid and have a blood relative with diabetes, I am highly susceptible to getting this disease too.

My TSH was 1.36 and my free T4 was 14 when I was tested last week.

I have just been referred to an endocrinologist, so that could be a few months wait. Great.

What tests have you had re: autoimmune?


irys 04-05-2005 06:33 AM

Re: I have alot of strange symptoms and alot of tests....
Your FT4 was 14?? Do you know what the lab ranges were for that? It sounds kinda high..

SDube 04-05-2005 08:58 AM

Re: I have alot of strange symptoms and alot of tests....
the ranges were 10 - 20 I believe.


SDube 04-12-2005 12:46 PM

Re: I have alot of strange symptoms and alot of tests....
My TSH was 1.38 Range .35 - 5.00 mU/L
My T4 Free was 14 Range: 10 - 20 pmol/L

They did not do the T3 test.

However, I had another test, where my TSH was .82 (Range .3 - 4.7 MU/L)just the week before.

I have alot of the symptoms of both diseases, but the dry eyes, mucous membranes, mouth and skin point to sjogren's (and of course, all the tests are negative)

They have done a random cortisol which was 483 (Range 170 - 540 nmol/L) and a DHEAS which was 4.8 (Range 1.8 - 7.7). These are perfectly normal results. However, my testosterone was 1.1 (Range 2.1 - 8.7 pmol/L). I'm really beginning to think that Sjogren's is the answer, even though the tests are negative.

Have you ever heard of normal random cortisol and DHEAS and a person still having addison's?


irys 04-12-2005 12:52 PM

Re: I have alot of strange symptoms and alot of tests....
Females should have FT4 levels in the upper 3rd of the range.

It would help you to have your FT3 levels tested. Those too should be in the upper 3rd of the lab range..

SDube 04-12-2005 01:15 PM

Re: I have alot of strange symptoms and alot of tests....
Thanks, I'll ask them to check that the next time. (I'm not going to have any blood left pretty soon).

Do you have any ideas on the Cortisol and DHEAS tests I had? Can I have adrenal problems and still have these random tests come out normal?


irys 04-12-2005 01:18 PM

Re: I have alot of strange symptoms and alot of tests....
About 4 weeks ago I had to go in to have a bunch of stuff tested - they ended up taking 12 viles of blood from me. I thought it was too much, but apparently not!

I'm not sure about the adrenal tests :( I'm waiting on my results now actually, and I'm curious where they fall.. I'm still trying to learn about all this adrenal stuff.

All times are GMT -7. The time now is 01:56 AM.