Adrenal Insufficiency Testing?

[roxie60]

Found some treatment options here

http://www.stopthethyroidmadness.com/options-for-thyroid-treatment/

 

[Ema]

You have to treat the adrenal insufficiency first before you start treating thyroid.

Your next step needs to be a stim test.

Ema

 

[rlc]

Hi Roxie, sorry somehow didn’t see the tagged post a few days ago, things have been a bit hectic in my life, RE

TSH - 4.758
FT3 - 2.9 (290)
FT4 - 0.90
RT3 - 11.2 range 9-27

Cortisol (7AM) 3.7
Lithium <0.2 range 06-1.2
DHEA - 114.2

Just want to make sure, is the Cortisol result of 3.7 in the unit of measure mcg/dl? Some countries use different units of measure, which can get confusing. If it is 3.7 and the unit of measure is mcg/dl it is very low, if you are not someone who stay up all night, which can reverse Cortisol levels, your result makes AI very likely see http://www.webmd.com/a-to-z-guides/cortisol-14668?page=2 As Ema has said adrenal crisis is a possibility with low Cortisol levels like you have, this can be very serious. Some info here http://www.addisons.org.uk/comms/publications/gpdiagnosingaddisons.pdf

Your TSH is a bit on the high side, however high TSH can be caused by AI see

•Thyroid-stimulating hormone

Increased thyroid-stimulating hormone (TSH), with or without low thyroxine, with or without associated thyroid autoantibodies, and with or without symptoms of hypothyroidism, may occur in patients with Addison disease and in patients with secondary adrenocortical insufficiency due to isolated ACTH deficiency. These findings may be slowly reversible with cortisol replacement. http://emedicine.medscape.com/article/116467-workup

Even if you do have hypothyroidism as well at the moment this is not the important issue, you need to have the AI situation sorted out as soon as possible. What is your doctor doing? If your result is in mcg/dl then they should be sending you to an endo immediately for a ACTH stimulation test and possible considering medication.

Hope things get sorted out as soon as possible, take it easy and conserve as much energy as you can.

If things get worse take your Cortisol result with you and get immediately to a hospital!!!!

All the best

 

[roxie60]

yes 3.7 mcg/dl. I have been having sleep problems again. I try to goto sleep at 11-12M but the last couple of months have been all over the place, there were some days I could not goto sleep before 6AM, maddening. I thought I was getting the sleep distrubance under control. Once I started taking Estridiol in April for the first time in awhile I flt like I as sleeping like a norml person. Able to goto bed at 1030-11 and wake up at 630-7A, still tired but finally getting some sleep, even started dreaming again, I was so excited. But then in about the last 60 days it got all messed up again.

 

[roxie60]

I have left two phone calls since last Thurs for my doctor or her nurse, have not heard back yet. She is an integrative health doctor, hopefully she recognises AI and hypothyroid markers.....

 

[roxie60]

A - always tired - almost always
D - dizzy wen stand - sometimes
D - drop in BP upon standing - I think mine goes up but cant recall at moment
i - inexplicable weight loss - lost about 10 lbs this past Feb but gained all back, definitely overweight
S - skin color changes - not sure what they mean pigmentation - I dont think so except on my knuckles, have some sores on torso, legs, feet hands, head
O - only eating sparingly - my appetite is all over the place but still eating
N - no strength in hands limbs - not sure lately, I just feel weak
S - sick or nauseous - I have felt more nauseous at times, flu like but not all the time
I had read these and ruled out Addison's since it doesnt seem like I have most of these

also my blood sodium is high not low

 

[rlc]

Hi Roxie, 3.7 mcg/dl Cortisol is a seriously low result, your sleep patterns may have made the result a bit lower, but this result has to be investigated properly quickly!!

AI is rare, most doctors are not very knowledgeable about it, I have even had one ask me what Addison’s is, so if your present doctor doesn’t get their A into G quickly, get a second opinion from another one quickly. We don’t want you running the risk of a possible adrenal crisis, it is important to get a definitive answer soon.

Addison’s symptoms can vary from person to person it looks to me as if you have many of them, flu like symptoms are also found in AI people. The skin changes include, increased tanning, looking like you have a sun tan when you haven’t seen the sun for ages, darkening of the skin in areas where clothing rubs against skin, darkening in the skin around joints like knuckles darkened skin in the creases in the palm, darkened skin patches in the mouth.

But this is only found in primary adrenal insufficiency (Addison’s) there are no skin changes if the adrenals are not working because of damage to the pituitary (secondary adrenal insufficiency, or the hypothalamus not working(tertiary adrenal Insufficiency).

This low Cortisol result could be serious, so try and get your doc to read up on AI if they don’t know about it and refer you to an endo so you can get the tests done that will clear up this doubt.

All the best Roxie take care

 

[Crux]

It seems when I look back at the Cortisol tets (saliva and plasma they are consistently low in the AM), DHEA is at lower end of range and Melotonin PM is low but over 22 in the AM. I have always thought my adrenals were shot, even had one Dr say so 30 years ago but I dismissed her diagnosis. I would be curious what others Cortisol, DHEA and Melotonin tests results were especially if you were dx with AI. Again the ranges are all over the place. This will take a few tries to get this reply complete. I save and edit a few times just so I dont lose my work.

Cortisol (Plasma)  12/09/11    7.5    (range 6.0-23.0 mcg/dl)
 
Cortisol (Saliva)
 
7AM-8AM
05/31/12    4.2  Low    (range 7.0-10 ng/ml)
12/30/08    8.7            (range 3.7-9.6 pg/ml)
02/16/13    0.42          (range 0.27-1.18 mcg/dl)
02/20/13    3.0 Low    (range 7.0-10 ng/ml)
 
12N
05/31/12    4.8        (range 3.0-6.0 ng/ml)
02/16/13    0.25      (range 0.10-0.41 mcg/dl)
02/20/13    2.4 Low  (range 3.0-6.0 ng/ml)
 
5PM
05/31/12    2.8        (range 2.0-4.0 ng/ml)
02/16/13    0.21      (range 0.05-0.27 mcg/dl)
02/20/13    2.2        (range 2.0-4.0 ng/ml)
 
10P
05/31/12    2.8 high  (range <1.5 ng/ml)
12/20/08    0.4          (range 0.4-1.0 pg/ml)
02/16/13    0.08        (range 0.03-0.14 mcg/dl)
02/20/13    1.8 high  (range <1.5 ng/ml)
 
DHEA (Saliva)
7AM-8AM
05/31/12    240.9      (range 57-615 pg/ml)
12/30/08      5.8      (range 2-23 pg/ml)
02/16/13      69 Low  (range 71-640 pg/ml)
02/20/13    323.5      (range 57-615 pg/ml)
 
DHEA/Cortisol Ratio
02/16/13    164        (range 115-1,188 )
 
Melatonin (Saliva)
10PM
05/31/12      5.1 Low  (range 25-60 pg/ml)
02/20/13      <1  Low  (range 25-60 pg/ml)
 
8AM
02/16/13    22.66 high  (range <=10.50 pg/ml)
 
5PM
02/16/13    <0.50        (range <=0.88 pg/ml)
 
3AM
02/16/13    23.18          (range 2.53-30.67 pg/mL)

Hi Roxie;
From looking at your cortisol results, I would guess that you do not have Addison's. You have what many here are experiencing, which is also not good, adrenal dysfunction. Your morning cortisol is too low, and your evening cortisol is too high.

People with Addison's, whether primary, or secondary, will not have elevated cortisol at night. ( They will also not have high sodium.)

I think you are right to rule out Addison's.
I believe that it is a good idea to examine thyroid, and to consider DHEA.
I'm not sure what may lower the elevated morning melatonin, light therapy?
If zinc is deficient, it can raise cortisol. Some folks here have written that phosphotidylserine, PS, has helped to balance their elevated evening cortisol.

 

[Ema]

Hi Roxie;
From looking at your cortisol results, I would guess that you do not have Addison's. You have what many here are experiencing, which is also not good, adrenal dysfunction. Your morning cortisol is too low, and your evening cortisol is too high.

People with Addison's, whether primary, or secondary, will not have elevated cortisol at night. ( They will also not have high sodium.)

I think you are right to rule out Addison's.
I believe that it is a good idea to examine thyroid, and to consider DHEA.
I'm not sure what may lower the elevated morning melatonin, B12?

If zinc is deficient, it can raise cortisol. Some folks here have written that phosphotidylserine, PS, has helped to balance their elevated evening cortisol.

I don't think you can say anything for sure based on the saliva results because they are different four days apart.

The preponderance of low values coupled with the low serum cortisol levels make a stim test necessary to rule out Addison's. Since Addison's can be deadly, this isn't anything to mess around guessing at when a dynamic test is the only way to know.

Ema

 

[Crux]

I don't think you can say anything for sure based on the saliva results because they are different four days apart.

The preponderance of low values coupled with the low serum cortisol levels make a stim test necessary to rule out Addison's. Since Addison's can be deadly, this isn't anything to mess around guessing at when a dynamic test is the only way to know.

Ema

I've never read of anyone with Addison's having elevated evening cortisol, or elevated sodium. I've been in contact with quite a few of them myself, as I have secondary Addison's. Even when I've been stress dosing and measured for cortisol, it has never been elevated, nor has my sodium.

 

[Ema]

I've never read of anyone with Addison's having elevated evening cortisol, or elevated sodium. I've been in contact with quite a few of them myself, as I have secondary Addison's. Even when I've been stress dosing and measured for cortisol, it has never been elevated, nor has my sodium.

Have you ever had an AM cortisol in the 3s? Roxie has.

For all we know, the high PM reading could have been a lab error because it was midrange 4 days prior.

Or she might not have been fasting when her sodium was measured. Sodium results are affected greatly by what we eat or drink.

If you have AI, then you should know how dangerous it is to remain undiagnosed. I can't believe you'd suggest to someone else that they not follow standard medical practice to rule out a dangerous but treatable condition just because of your n=1.

Ema

 

[Crux]

Have you ever had an AM cortisol in the 3s? Roxie has.

For all we know, the high PM reading could have been a lab error because it was midrange 4 days prior.

Or she might not have been fasting when her sodium was measured. Sodium results are affected greatly by what we eat or drink.

If you have AI, then you should know how dangerous it is to remain undiagnosed. I can't believe you'd suggest to someone else that they not follow standard medical practice to rule out a dangerous but treatable condition just because of your n=1.

Ema

My morning cortisol is <1, done repeatedly.
In Roxie's case, she has had labs done 4 times.

In my case, fasting and nonfasting sodium has remained unchanged.

I have not suggested, not at all, that Roxie not follow standard medical practice!

 

[Ema]

Cortisol less than 1 is pretty tough to do without being in adrenal crisis.

I've tested my sodium in the AM fasting and then in the hospital when I went for fluids later in the afternoon or evening. It consistently varied by about 6 points...the difference between under range and midrange. Sodium depends more on aldosterone than cortisol and perhaps her level is fine.

Labs more than six months old aren't that useful in telling us what is happening now. They can show a progression of disease perhaps but even the labs from last Feb are on the edge of useful in August.

The recent low serum cortisol of 3.7 is diagnostic of AI all by itself according to the Arlt journal article I posted in her other thread. Whether or not she has Addison's or secondary AI is to be determined by a stim test. But either way, she needs a stim test yesterday.

Ema

 

[roxie60]

Please dont fight, I value all of your comments and experiences and desperately need them in this medical black hole I find myself. Still have not heard from Dr. I agree I do not think the older tests of of much value, they are just there to show past status and to compare to current year status. I have always fasted for my blood test, usually no less than 10 hrs. I have read what everyone has posted about Addison's and to a layman it just doesn't seem to fit, yes I have some of the sumps, darkened knuckles (the only skin color change aware of), but have high sodium, have gained and cant get rid of weight.

My recent lab results even surprised me but I have also been more fatigued this past month, what is frustrating is it seems Drs take these point in time blood tests and then maybe you get the same tests again in a year. It seems to me my body fluctuates so much I wonder if these values are also all over the place.

I am faced with making a decision in the next week to try and return to work (part-time) since I have not heard from my Dr about latest labs and thus no new diagnosis. If I return to work my long term disability claim closes and I am subject to new waiting period of 180 days before the process can start again provided I can stay employed that long. I am 15 months from retirement and G~d knows I would return to my job if I could just know I would have energy to get thru multiple days. No sane person would go thru this madness of seeking disability and financial support if they were well enough not just to show up and warm at seat at work but to be successful. The current situation is I am at risk of losing my career in 8 business days but my long term disability claim will take at least another 6 weeks for a decision. Based on all my experiences thus far I am not optimistic for a favorable decision. All I want is some energy, I can live with the other symps, I have for years but this inconsistent level of energy and memory/compreshension issues is frightening.

Ive never been a quitter but I feel for now it seems out of my control. Still there are 8 days for G~d to intervene and give me hope. But even if not I know G~d is still in control and I will just have to adjust to a new kind of life.

 

[roxie60]

I dont have words to describe how I feel these days nor do I seem to have enough energy to try and communicate to people what is happening. I may start to describe and then shortly its like not enough energy to complete thoughts. Weird sensations, I've had before, like internal vibrating. I would try to describe as if all my cells are so tired they are aching for energy which is a sensation of virbating. I am irratible, easily frustrated, short tempered. I swear bu body feels like it could just keel over but I keep trying to stay upright. Most bizarre.

 

[Ema]

I dont have words to describe how I feel these days nor do I seem to have enough energy to try and communicate to people what is happening. I may start to describe and then shortly its like not enough energy to complete thoughts. Weird sensations, I've had before, like internal vibrating. I would try to describe as if all my cells are so tired they are aching for energy which is a sensation of virbating. I am irratible, easily frustrated, short tempered. I swear bu body feels like it could just keel over but I keep trying to stay upright. Most bizarre.

The internal shaking is another huge low cortisol symptom.

Hardly anything is ever textbook. I agree with Crux that it is more unusual to have high sodium with AI but that doesn't mean it isn't possible. Diseases don't always read the textbooks.

I don't want for you to suddenly think based on that comment that you shouldn't follow up on testing when it is so crucial.

Ema

 

[roxie60]

 

[roxie60]

Just called and Endo in another city and the nurse was nice enough to talk to me, she said a 4.76 TSH would be considered high by the doctor and needing treatment. So now I need to get a referal from my doctor but probably cant see him for three weeks.

So my question, if I also have adreanal insufficency will an Endocrinologist be the one to recognise that needs treating before hypothyroid if he decided I have that? I'm thinking about calling a local Endo and ask the same question but this doctor appears to hve 4 offices in multiple cities so that worries me that they are spread to thin to really pay attention to my situation, I am tired of being a number.

Called another Endo here local and his nurse said he would not be able to tell me if a TSH of 4.76 indicated a thryoid problem that he needed to do other tests. Once again have to have referal and both of thee Drs only take patients with commecial insurance, so sick poor folk be damned unbelievable. The ones who have been sick have likely used their resources up. lost their livelyhood, etc....what a screwed up system.

Well I still have commercial insurance at least for another 8 days but it will take likely three weeks to get into see either of these drs. I am inclined to goto the one 50 miles away (100 miles) but the thought of driving that far right now how I feel is worrisome

 

[roxie60]

Just tried to look up a local Endo and found my current doctor on the list, go figure.

 

[Ema]

Just tried to look up a local Endo and found my current doctor on the list, go figure.

Why can't your current GP order your stim test now? Or issue a referral without waiting for your next appt?

Endos are notoriously unreliable at diagnosing AI. Most have never seen a case in their entire career and remember nothing about it from med school. Most have better luck with an open minded internist or GP. Functional med practitioners or DOs are often more open minded about viewing the whole body as a system.

Please don't try to treat thyroid before adrenals. It doesn't work and you may precipitate a crisis.

Won't you be eligible for COBRA?

Ema