New to this with questions

[Jackie419]

I've been diagnosed with stage 3 adrenal exhaustion but thought I would throw the numbers by you all here. I've been on the thyroid forum for a couple of years and also dealing with a high reverse t3 with my thyroid. My doctor wants me to go on Cortef/generic, 5mg. -1 1/2 per day and also wants me to do a T3 only protocol for a few months for the RT3. Hoping to get some thoughts on the good things and/or the dangers of being on this med for an extended time. Also, shouldn't I get my adrenals straight before doing thyroid therapy? Any input is much appreciated!

24 hour saliva test:

6:00- 8:00am          5      Depressed       13-24nM

11-1pm                    6       normal               5-10nM

4-5pm                      3        normal               3-8nM

10-mid                     4        normal               1-4nM

Cortisol Load           18                             22-46nM

DHEA Free
Pooled value   3   borderline        3-10ng/ml

[rumpled]

Uh yeah, *in theory* that doctor should... but I wonder sometimes when the docs list that if they just read about a paragraph in med school or attended a seminar where it was mentioned or it was a test question, as I know there are few endos that ACTUALLY specially as a bone endo and really cover all the parathyroids, osteoporosis, etc. For instance, my current neuro-endo knows a tiny bit, but he is pretty clueless about mine and I am going to have to find a specialist as my PTH is hitting the skids again.

There is an option of NIH if you can get in - they have clinical trials but their trials are not like drug trials, you get state of the art surgery and follow up. There are angel flights to get in - as well some of the larger hospitals have charity care - but you have to have a diagnosis first. I do know NIH does PTH trials - so that may be an option. Many include transportation.

[Jackie419]

Beating a dead horse on the doctor, I know but the lady I saw (that did the ACTH and DHEA-s) has the longest list of specialties at the Clinic. I haven't worked in over a year and have no insurance, so I am limited as to what I can do. I am out over $300 for the DO that wants me on the HC and T3-ony protocol.
I just looked up pituitary specialists and guess what? That 1st endo has Pituitary Disorders at the top of her profile. Here are a list of her specialties and the only thing she obsessed about was thinking I have Celiac disease (which I don't) and my use of xanax to be able to sleep. She flat out ignored everything else, including all the old tests that showed low calcium, potassium and sodium etc....shouldn't someone with the below credentials have tried to treat me? I don't know where else to go, but I'll keep trying. Thank you so much.

Addison’s Disease
Addison's Disease
Adrenal disorders
Adrenoleukodystrophy (ALD)
Amenorrhea
Androgen Deficiency (Low Testosterone)
Androgen Excess
Beta-cell disorders
Bone Disorders
Calcium Disorders
Carcinoid Syndrome
Cardiovascular Risk Prevention
Conn's Syndrome
Cushing's Syndrome
Diabetes
Diabetes - Management
Diabetes, Gestational
Empty sella
Endocrine Complications of Pregnancy
Familial Multiple Endocrine Neoplasia
Fasting hypoglycemia
Flushing Syndromes
Galactorrhea
Goiter
Growth hormone deficiency
Growth hormone excess
Gynecomastia
Hair Loss
Hair Loss in Women
High Cholesterol
Hirsutism
Hyperaldosteronism
Hyperandrogenism
Hypercalcemia
Hyperprolactinemia
Hypertension - High Blood Pressure
Hyperthyroidism
Hypertriglyceridemia
Hypocalcemia
Hypoglycemia
Hypogonadism
Hypoparathyroidism
Hypophysitis
Hypopituitarism
Hypothyroidism
Klinefelter Syndrome
Mastocytosis
Menopause
Menstrual Disorders
Metabolic Diseases
Metabolic Syndrome
Neuropathy - Diabetic
Obesity
Osteomalacia
Osteopenia
Osteoporosis
Paget's Disease
Panhypopituitarism
Parathyroid Cancer
Parathyroid Disease Description
Periodic Paralysis
Pheochromocytoma
Pituitary Disorders
Pituitary stalk lesions
Pituitary Tumors
Polycystic Ovary Syndrome
Primary Hyperaldosteronism
Primary Hyperparathyroidism
Prolactin Excess States
Prolactinoma
Pseudohypoparathyroidism
Reactive hypoglycemia
Secondary Hyperparathyroidism
Sexual Hormone disorders
Tertiary hyperparathyroidism
Thyroid and pregnancy
Thyroid Cancer
Thyroid Disease
Thyroid Nodule
Zollinger-Ellison Syndrome

[rumpled]

I would see if you can get into a pituitary center. Even though your issues have not been proven to be pituitary, you do have tests to show you have what should be a failed or wonky stim, low calcium and therefore you may have MEN (multiple endocrine neoplasia) and/or another complex endocrine disorder.

There are interactions with the hormones - and certainly order to straighten them up as some are certainly more negative as well have more impact than others but alas, there is a lot of bad information out there and even a normal endo who does mostly diabetes is not good with complex cases. Heck, I am super complex and some neuro-endos cannot take on my case hence I am a wicked doc shopper once I figured out, sadly, they are not 100% correct. And I went to some top  hospitals.

I know it is hard to find doctors - I have been there. I had to travel from NJ to CA to get diagnosed... I tried all over NYC!

[Jackie419]

Thank you very much for your post.

I have also noticed in seeing all old labs that my calcium has always been low and never high. After being on calcium supplements it went from bottom of range to: 9.4  (8.5- 10.5) but for years was at 8.5 or below. (Jan)

It was an endo  at the great Cleveland Clinic that ran the ACTH/ DHEA test, and told me my adrenals were fine. It has taken me three years to get to the point I am at. I have been to 13 or more doctors in various specialties (2 ENDOS!) in the past year alone and the low dose HC and T3 are all I have been able to come up with....that and countless offers for anti-depressants.

I have a bunch of tests that were done, but don't see anything about aldosterone. A member of the thyroid board told me my ACTH/DHEA-S looked not so good, but I had no one to address it. Even arued about it with the endo who ordered tests. One would think the CC could take care of a person. I think you have to have completely crashed for them to acknowledge a problem.

I had always heard that if you have thyroid problems and adrenal problems, fix the adrenals 1st so as not to put undue stress on the thyroid and then straightening out the thyroid is more effective, so that's where I was coming from.

Finding another doctor at this point, after so many- I probably have a better chance at winning the powerball tonight, I'm afraid. The stress of all of these doctors has made me far sicker than I was to begin with.

Thank you very much for telling me like it is.

[rumpled]

Calcium is another issue - that is PTH - the parathyroids - so that needs another type of endo and another treatment all together. That can be serious too so I would look into that as well. I am hypoparathyroid from surgery.

Your stim test is rather awful and you have the low K and Na- so why did the endo not follow up and put you on replacements? Any renin and aldosterone testing? You probably do need florinef aka fludorcortisone.

I simply don't follow the adrenal fatigue school - but if you have AI - which it sounds like you do, you need to get to a great endo at a larger university or larger hospital and get the replacements you need - and will be on them forever. You also need an emergency kit etc. I also take florinef, salt, dhea etc. but I don't have adrenals (they were removed).

You can fix the thyroid all you can and while it will *effect* the thyroid - it is not a fix - they are separate hormonal loops. Hormones effect each other, but they usually don't completely suppress each other. High cortisol though can usually suppress GH, TSH and others (like raise blood sugar) to an extent but it can vary in each person and the hormone is still there and can come back so you have to adjust replacements.

Find another doctor.

[Jackie419]

...forgot, I had this test done with the acth test back in January also, blood test:

DHEA-S 38.5    10.0 - 221.0 ug/dL

[Jackie419]

ps...two schools of thought: fix adrenals and RT3 will come down OR

      Just fix the damn RT3


lol....just attempting to not be a sheep and jump at whatever a doctor says. Since I don't know enough about it, I am thankful for this forum :)

[Jackie419]

Hey there! didn't realize you posted here too.
The doctor is a DO, more holistically inclined and I don't know my adrenal business like other do. I would have sworn I had adrenal probs in the past but no one would address them so I just rolled on.

If you read my abovepost, you'll see that 3 grains and higher frees and no hyper symptoms, but HYPO symptoms. I had lowered my dose very slightly for the most recent test but went very hypo and developed a boil (which is a hypo symptom for me) and went back up to 3 grains. Just tested today and can post those soon, but here are my last two test, unfortunately done 2 different places so different ranges....


Feb. '13  3 grains (180mg)
TSH            .006
FT3              4.3         (1.8- 4.6)    pg/ml
FT4             1.6          (.7 -1.8)    ng/dl
RT3             366        (90-350)  pg/ml

I had same numbers as above months before that on MORE med, couldn't get those numbers to budge downward, but then a decrease of only 8.5mg per day and they go down to this:

April '13

TSH     .03         .34- 5.60
FT3     3.4        2.0- 4.4
FT4     1.23     .82- 1.77
RT3     30.6      9.2-    24.1  (This range was officially changed from a high of 34!!)

Thanks a lot for posting!!!

[Jackie419]

Thanks for answering my post!
I had been undermedicated for hypothyroid for years. In 2010-into 2011 had one big thing after another cause me major stress, dropped about 20lbs-joint problems/carpal tunnel type stuff and many more symptoms. My GP looked at my tsh only and thought i was hyper, but my frees said i was HYPO- no one would address my adrenals but then I went on compounded thyroid med, prescribed by a new doctor. I went up to 3 grains and did very well for about a year.
I then didn't feel like the 3 grains was working, i felt hypo again and started to drop weight again (after gaining it all back). I  then went through a move across country and just crashed ie; just felt exhausted, aggravated etc. I then found out i had severe deficiencies: Vit D, B12, Folate, Iron the whole lot of them. Also had my RT3 tested for the first time and it was high.
Spent the past year getting those deficiencies taken care of, they are good now. Still have a high RT3 and the saliva tests above were done recently- i was not sick as in having a cold or anything like that, i just have no energy and feel awful most of the time.
Looking back on tests going back 7 years, my potassium and sodium were both always below the bottom of the range. A surgeon of mine stated in records in '08 that i had hypocalemia, but never even told me that. I don't know why no one ever bothered to say anything to me about that!
I have always had low end blood pressure as well.

Here is the ACTH stim test i had last January, if it helps:

Cortisol Basal 17.5  ug/dL  
Cortisol Reference Range: AM = 3.4-26.9, PM = 0.9-15.8

Cortisol 30 min 24.6  ug/dL  
Cortisol 60 min 16.9  ug/dL

Thanks for responding. It's been a long couple of years, and especially the past year.I am just wiped out and it's been hard to get anyone to even address that the RT3 is even an issue. I did the saliva test to make this doctor happy and really just wanted to know from people who have gone through this if this is the real deal or not. Thanks so much for your thoughts and input,it is appreciated!

[kevieb]

Cortisol exhaution or cortisol fatigue is kind of an iffy area, and if I am understanding things that I read, it seems to be  alternative Dr's and naturopaths that "diagnose" these conditions, not regular endocrinologists---could be wrong there.

You seem to be going to a doctor that prescribe medications, though, so he must be an MD or a DO.  Who are you seeing.

I don't think I've heard a lot about stages of adrenal exhaustion. And I don't quite understand the cortisol load---al it is doing is adding up what your levels were at 4 times of the day.  You could have had it shoot up with a mild stress any time of day---so I don't see any way that the cortisol load they tell you could be accurate.

I have read that T3 only medication for awhile is normal treatment for a high RT3---my doctor does not test RT3.

My understanding is that RT3 is not a problem unless your FT4 and FT3 levels are not where they need to be.

Yes, you need to make sure you do not have an adrenal problem before you get too far into thyroid therapy---unless you are doing fine on your dosage.  If you have an adrenal problem, it will show up when you try to raise your thyroid levels.    

You need to have more adrenal testing done rather than just saliva testing--all it is telling you is whether or not your levels are right at certain times of day---I don't think it can really tell you if your are too high or too low---because all you are getting is 4 snapshots of your cortisol levels during the day.

I don't think ther are any dangers of being on T3 only, unless you are on the wrong amount.

Could you post your thyroid levels and the lab ranges?

[rumpled]

Cortef is not something one starts, IMHO, over saliva testing, nor does one consider for one set of testing.

The standard is a stimulation test where the adrenals are stressed and you see how they react. Even that is not prefect as they can do a last hurrah and give a normal when they are on their way out.

More information is given by sodium and potassium readings as AI is a SALT WASTING disease so if you have normal sodium, you don't have the disease.

Sodium and potassium are related so you will also get wonky K readings too. It often will mess with your BP. Most often low.

Were you sick when you did the test?

BTW it is when you are sick that you need EXTRA medication to help you over illness - it is called stress dosing. So no, you don't wait until after you are sick if you have AI, you would get so sick that you would not get better without it and in some more severe illnesses like flu etc, it could lead up to and including death.

Steroids are nothing to mess with - if you don't need them, don't take them as they can do more harm than good.

Thryoid is helped from thyroid meds.

[Jackie419]

...also, I am on day 5 of antibiotics for a staph infection and don't think I should start the Cortef until I am over the infection, from what I have read.