what tests should be run

[kevieb]

i haven't been on in awhile--i had twin daughters get married--one the week before thanksgiving--the other the week before christmas--and a double reception between the two.  then my husband had surgery on the tuesday before christmas.     i have not been able to get back to the endocrinologist--things were just too hectic.  they would only refill my hydrocortisone once until he saw me again--my local doc's nurse said they wouldn't fill it because they didn't fill it originally---so i have slowly just kept weaning myself off of the meds myself.  i am down to 5 mgs every other day---i could probably quit at anytime now and be ok.  i have one week left of my armour thyroid--don't know what to do about that. it was originally written out by the first endo i saw--not my family doc or the second endo--so no one is going to want to mess with that--not sure i want them to anyway.  the newest endo i saw never took any blood work---i'd kind of like to start with a fresh slate as to what my body is actually doing if i see him again--not convinced i really want to.

i've been doing a little research and discovered that all my thyroid tests were done using the old lab guidelines---even though they were changed in 2002.  also, the first endo started me on thyroid before checking my adrenals--i've learned this is not the right way to do it---no wonder i never felt any better with anything she did---she probably overwhelmed my adrenals and they never had a chance to catch up.

i am exhausted--only good for a couple of hours a day, my joints hurt, my muscles hurt i cry every day--basically i am a mess!!  i'm so cold, too half the time and my feet feel like ice when i take my socks and slippers off. my hands are always cold when i get to church--and i play the piano for the first meeting.  i'm just feeling frustrated with the doc i have to deal with.

my sister is dealing with a doc in conn. that seems to be doping her alot of good.  i emailed him and asked for his articles--he replied within the hour and told me that all of my symptoms could very well be caused by thyroid and adrenal insufficiency--including my carpal tunnel. (i already knew that one) he told me someone to call that might be able to find me a doc who treats the same way he does closer to where i live--and if i can't get any help--he said he has a busy practice, but he would try and help me--but i'd have to get to connecticut at least once to see him---got to figure out how to come up with themoney for that one if needed.

just kind of venting today, i guess.  i am exhausted all the time, have a horrible time finding a position to sleep in that doesn't make my left arm or fingers go numb--but sleeping on my right side makes my shoulder ache!  i have no desire to do anything--not even cook or eat--but i've got to feed my kids!!

i need some positive feed back

[kevieb]

i saw our local internist--he seemed ike a pretty nice guy--and was very honest with me in the fact that he told me this was way neyond him.  he said i had two speciaists who gave me two different diagnoseses (SP?)  his reccommendation, if i had teh resources and inusrance was to go to the mayo clinic, he said he would give me a reccommendation---like i could afford to pay for that in my lifetime!!!

right now, i really need to get my testosterone checked because the last time it was checked , over a year ago--it was bottoming out.  1.7  with a bottom range of 1.1  i recognize the symptoms.  i am getting frustrated because i try to "accomodate" my husband as much as possible--but it doesn't seem to be enough for him.  i am so sick of the little sex comments that i am supposed to interpret as being his "come on" to me.  they are the same kind of comments he makes when he is just joking around and not really waqnting any romance---i can't tell the difference!!!!

I guess i am so mad because he knows i have this problem, and instead of encouraging me to get in to get my levels tested, he has a fit if i talk about anything medical---come on, guy, i need some support here!!!  i don't need complaints becaue he doesn't get enough.  when there is no drive, no libido, when the sensation is even starting to disappear, everything is dry and it is even starting to hurt---i just am not thrilled about a nasty (but not innappropriate" comment made to me that is supposed to get me in the mood!!

ok, sorry about really blowing off steam--and about this subject on a public forum, of all places!!!

[rumpled]

Right - TSH is not good for thyroid - I agree - but it is still ok as a pituitary test!

[kevieb]

http://nahypothyroidism.org/deiodinases/#individual%20variations

http://www.thyroid-info.com/articles/david-derry.htm

here are a couple of links that explain why the TSH is not reliable---and they are written by doctors--not naturpaths or chiropracter/naturpaths or any other "alternative" so called medical-type person.

[rumpled]

TSH is a reliable test... for the pituitary! Why it became the gold standard as a thyroid test is unknown to me. If the doc says that ask him why is he only testing what another gland is telling the thyroid to do, instead of the gland itself - and since around 20% of people have pituitary issues, how can just testing half (or less) of the hormonal loop only be good?

Thyroid is difficult to regulate under the best of circumstances and you had a lot of fingers in your thyroid pie, so to speak.

I hope you find a decent doctor.

[kevieb]

just letting me vent my frustrations is helpful.

I've seen so many different test that can be run--i'm not sure which one's to ask this doc to run when i see him on thursday---assuming he is open-minded, that is and is willing to listen to me.  if he tries to tell me that the TSH is a very reliable test---i hope i don't start screaming hysterically.

[kevieb]

about the psych and the thyroid test---he told me that was one of the things they tested in their office--not a bad idea since low thyroid can cause or worsen psych symptoms.  he also seemed to know my endo.  she was from back east originally and i think he said she had treated his sister.

the when i saw him, i had been switched to levothyroxine by my endo because of a shortage in armour (we actually had a compounding pharmacy that could have made a T4/T3 combo for me).  i had not seen the endo for several months since she changed me--so he went ahead and tested my thyroid.  he seemed to understand that my TSH would not be reliable because of the pituitary problem and told me that the T3 uptake was the most important test. He obviously didn't have everything right--but he knew more than alot of docs.  the main problem was that a different doctor looked at the results, didn't recognize an abnormal test and just kept lowering my thyroid to try and make my TSH normal.  one time, when he ordered the tests after lowering a dosage---he ordered an outdated test---the lab put a note on the test saying the panel he had ordered had been replaced by another test over the last DECADE.  the guy had no business messing with my thyroid medication---he didn't know anything about it and he didn't even order the original test. he also didn't even write down in my medical record one of the dosage changes he had made.

[kevieb]

i spent several hours the other day taking all my labwork and chart notes and organizing them according to date---thats when i realized how many times my meds ahd been changed--or were supposed to have been changed---there wasn't even a chart note from the last time i had seen my first endo--the one that was so unorganized---she was suppoed to have sent all of my records--they came in such a disorganized mess with multiples---and no running ledger of my visits like i have seen other doctors keep.

i still can't figure out why there was so much discrepency over how much armour i was taking---or why my PCP changed the level in october without even doing any testing.  i don't know why the second endo had me listed as taking 30 mcgs of armour when the prescription records show i had been filling 60 mcgs for about a year---i wonder if i told him that's what i was taking by accident--but i thought i brought all my meds with me like they told me to.  of course, he could have looked at the last report from my old endo---but it was dated 1-18-2010 and still said i was taking levothyroxine----and the whole thing about him saying i told him i was only taking half of my dose because i had the shakes and some other symptom is just weird---i don't remember anything about that and neither does my daughter , who was with me.

the last blood work that had been done on me showed that my testosterone was down to 1.7---with the range being 1.1--to 5.8----obviously i was getting really low again--i was hoping the new endo would test my levels, because i had no sex drive again---i'm sure by now they are way below range.

what do you think of the basal axillary temp being used in helping to diagnose low thyroid?  i have tested 3 times over the last several days.---97.4, 97.5, and 96.4.   i always knew my temperature was about a degree below normal--but i didn't know how low it actually dropped at times---i suppose that would explain why i get cold---and maybe the cold hands and feet.

[rumpled]

A psych changed your thyroid?
I do find all this confusing - like you do... you really need a good doctor - and to maybe put the tests in a chart with date and time on them... with notes.

I don't know how to help you but I wish I did...

[kevieb]

oops, the doc switched my T3 from 60 to 30--not 3.

[kevieb]

oh yeah, after organizing my labwork and doctor reports by earliest date to latest date---i could see why i have never felt better.  there were so many changes made in my medications, both types and amounts, i don't think my body has ever had a chance to let itself adjust to anything.   i could see a change in armour amount listed by the doctor---that was never called into the pharmacy--then the next month her report listed me as taking the lower amount---i think she forgot she wanted to raise it, never called it in, and then didn't look at her previous report where she had raised it.    then she switched me from 30 armour to 50 levothyroxine---i had to request T3.  

when i saw the psych, my thyroid hadn't been checked in awhile, so he ordered the test--but another doc read teh results (low T4 and low TSH) and dropped my loevothyroxine to 25, next test he ordered an outdated test--lab had to tell him and then run the right one--both T4 amd TSH were still low, so he dropped my levothyroxine completely and  dropped my T3 from 60 to 3. next test had low T4 but a normal TSH---my hair was falling out by this time--the psych saw my test results and put me on 60 armour.

My prescription records show that i was getting 60 armour until october of this year--when my PCP changed it to 30 armour.  nobody had tested my thyroid, the office checked my record and said it gave no reason for why my armour was lowered.   the second endo had seen me in late june/early july and his notes said i was taking 30 armour an that i said i was having shakes and something else so i was only taking 1/2 my dose--i have no idea what he was talking about---except that he had looked at my hand and said i had a slight tremor--it was very slight.  my daughter was with me and remembers my version of the visit.   when the endo was having me lower my HC, i did have one month when i was waking up with the shakes and getting times when my heart would pound--so i took 15 armour for about a month--then went back to 30 for the next month without a problem.  once i was basically off the HC, i have hd a couple of times when i have gotten the shakes and the heart pounding again----but not regularly.
i think it is a cortisol problem and not a thyroid problem--or maybe a combo of both.

if you found all that hard to follow---you have some idea of why i am struggling with what to do, who to see, who to believe, and why i am feeling like crap!!!!

[kevieb]

i've seen alot of this similar info when i was trying to look it up--but it all is referring to ongoing therapy and the need to taper down to avoid shutting down the adrenals---i had a hard time finding much of anything that referred to a onetime shot.  i did finally find something that said it could take 30-40 to completely clear the system--but it also said it could be sooner.

if it were to take a full 40 days to clear, does that mean that your adrenals would be completely affected for the full 40 days, or would the effect lessen over time as you approached the 40 days.

My cortisol level was already down to 6.3 before the shots and my ACTH was down to 9---so both of them were nearly at the bottom of the normal range--which looks to me like my adrenals were already having a hard time functioning because they were not getting enough ACTH.

I also had low DHEA, low testosterone, and high sex hormone binding globuline--my estrogen was 1159---which is extremely high--but my obgyn felt like it was a surge from ovulating, although he said he had only seen it that high a few times----it has been normal since then---i think it was just a fluke surge--probably because of my age.  The endocrinologist i talked to online from UCLA told me that he didn't feel like the shots would have shut my adrenals down like that, but he did say that even if they did, it should not have affected my other hormones.

i went through all my labwork and doctor visit reports yesterday to get them in order for seeing the inernist next week.

I noticed that even when i was on 30 mgs of HC, 50 mg of levothyroxine, and 60 mcg of T3,  my cortisol level was only 7.3 (range 2-23)  DHEA was 11 (range 56-283) my Free T4 was .67 (range.71-1.85) my Free T3 was 4.0 (range2.4-4.2) my TSH was .06 (range .45 to 4.67) and my T3 uptake was 33 (range 28 to 41)  

If i'm reading things right, it looks like everything was either flagged as low, or in the low-normal range---except my Free T3.  this was when the doc decided to lower my levothyroxine to 25 mgs---he was trying to normalize my TSH, i guess---he didn't seem to pay attention to the fact that my T3 levels were pretty good.  I'm thinking that this shows that my TSH is totally unreliable, which would help to confirm that my pituitary isn't reliable---since TSH is a pituitary hormone---or for some reason my blood serum levels of T3 were high, but that something is keeping me from being able to get the T3 from my blood into my tissues---because none of my symptoms had improved.  also, i can't figure out why my cortisol would be at the low end while i was on HC--the level was drawn  at (9:44 in the morning, so they should not have dropped that much from their highest  morning levels yet.

I've seen the same strict protocol about stim tests that you have on different sites--but i have seen other sites that were really lax about how the stim test was done.  and, i had one endo that was very strict about the protocol being followed, and another that didn't come anywhere near to following even the lax prtocol--didn't seem like they followed any protocol.

I did find out that the second endo apparently did not see that my cortisol and ACTH were both low before the steroid shot.  He sent a note to my PCP and said he thought the AI was caused by the shot--but he had made no note in my records that my levels were very low before i got the shot.  i think he didn't read the lab reports carefully. if you glanced at them quickly, you saw an obvious date in the corner that was telling  the document date and the print date (two different dates)  but you had to read through the finer print to see the collection date and time.  however, the low cortisol showed the correct date for the document date.

when the cortisol showed up low, she ran the ACTH 2 days later, so the print date made it look like it was tested after my shots--but the fine print showed it was tested before the shots. plus, this guy did not hav any actual dr. report telling when i actually got the shots, who gave them, or how much i was given---he was only going by what i told a woman in the office to tell him----just seems a little unprofessional to me.

Hope all that made sence.

why is it that you take a combo of T4 and T3 rather than armour--do you feel you are able to adjust it to what your own body needs that way?

I would never take more armour than my doc prescribed, but i have read alot about how docs used to diagnose by symptoms only, since there were no tests available--and natural thyroid was the only med available.  They seemed to have alot more success with eliminating symptoms for people.  after they came up with the TSH and synthetic T4, they would treat people using the TSH and give them T4 until their TSH  was "right"  but people were still having hypothyroid symptoms.

I've also read that for various reasons, some people cannot take armour and need to take T3 only.  it's really hard to try and figure this all out---especially where i have adrenal function,looking like it is caused by hypopituitarism, to deal with.  i have become extremely frustrated by so much conflicting information.

[rumpled]

I travel 6 hours one way and have traveled to LA, Seattle, Ohio etc. to get help. It simply pays to get expert help. However, no one doctor fits all - the doctor that I like may or may not suit you - aka personality or insurance issues. I had to see multiple doctors to find one. Even locally, the doctor I see has both good ratings and bad - so you just can never tell! I have waited to see top docs in magazines only to hate them - but others obviously must love them.

I would say look for info on pubmed, NIH and sites that publish medical papers. The freezing part of ACTH is on the actual lab site instructions as well as some papers. I have heard differing instructions on the stim test - some like a double - some shoot for a specific number. I never could understand if it was the doc, or the stim agent.

Re shot - here are the precautions:
"Precautions:

Intra-articular injection should not be carried out in the presence of active infection in or near joints. The preparation should not be used to alleviate joint pain arising from infectious states such as gonococcal or tubercular arthritis.

Undesirable effects may be minimised using the lowest effective dose for the minimum period, and by administering the daily requirement, whenever possible, as a single morning dose on alternate days. Frequent patient review is required to titrate the dose appropriately against disease activity. (See dosage section).

Adrenal cortical atrophy develops during prolonged therapy and may persist for years after stopping treatment. Withdrawal of corticosteroids after prolonged therapy must, therefore, always be gradual to avoid acute adrenal insufficiency and should be tapered off over weeks or months according to the dose and duration of treatment. During prolonged therapy any intercurrent illness, trauma or surgical procedure will require a temporary increase in dosage. If corticosteroids have been stopped following prolonged therapy they may need to be reintroduced temporarily.

Patients should carry steroid treatment cards which give clear guidance on the precautions to be taken to minimise risk and which provide details of prescriber, drug, dosage and the duration of treatment.

Suppression of the inflammatory response and immune function increases the susceptibility to infections and their severity. The clinical presentation may often be atypical and serious infections such as septicaemia and tuberculosis may be masked and may reach an advanced stage before being recognised.

Chickenpox and measles are of particular concern since these normally minor illnesses may be fatal in immunosuppressed patients.

Unless they have had chickenpox, patients receiving parenteral corticosteroids for purposes other than replacement should be regarded as being at risk of severe chickenpox. Manifestations of fulminant illness include pneumonia, hepatitis and disseminated intravascular coagulation; rash is not necessarily a prominent feature. Passive immunisation with varicella zoster immunoglobulin (VZIG) is needed by exposed non- immune patients who are receiving systemic corticosteroids or who have used them within the previous 3 months; varicella-zoster immunoglobulin should preferably be given within 3 days of exposure and not later than 10 days. Confirmed chickenpox warrants specialist care and urgent treatment. Corticosteroids should not be stopped and the dose may need to be increased.

Patients should be advised to avoid exposure to measles and to seek medical advice without delay if exposure occurs. Prophylaxis with normal immunoglobulin may be needed.

During corticosteroid therapy antibody response will be reduced and therefore affect the patient's response to vaccines. Live vaccines should not be administered.

Patients and/or carers should be warned that potentially severe psychiatric adverse reactions may occur with systemic steroids (see section 4.8). Symptoms typically emerge within a few days or weeks of starting the treatment. Risks may be higher with high doses/systemic exposure (see also section 4.5 pharmacokinetic interactions that can increase the risk of side effects), although dose levels do not allow prediction of the onset, type, severity or duration of reactions. Most reactions recover after either dose reduction or withdrawal, although specific treatment may be necessary. Patients/carers should be encouraged to seek medical advice if worrying psychological symptoms develop, especially if depressed mood or suicidal ideation is suspected. Patients/carers should also be alert to possible psychiatric disturbances that may occur either during or immediately after dose tapering/withdrawal of systemic steroids, although such reactions have been reported infrequently.

Particular care is required when considering the use of systemic corticosteroids in patients with existing or previous history of severe affective disorders in themselves or in their first degree relatives. These would include depressive or manic-depressive illness and previous steroid psychosis.

Special Precautions:

Particular care is required when considering use of systemic corticosteroids in patients with the following conditions and frequent patient monitoring is necessary.

Recent intestinal anastomoses, diverticulitis, thrombophlebitis, existing or previous history of severe affective disorders (especially previous steroid psychosis), exanthematous disease, chronic nephritis, or renal insufficiency, metastatic carcinoma, osteoporosis (post-menopausal females are particularly at risk); in patients with an active peptic ulcer (or a history of peptic ulcer). Myasthenia gravis. Latent or healed tuberculosis; in the presence of local or systemic viral infection, systemic fungal infections or in active infections not controlled by antibiotics. In acute psychoses; in acute glomerulonephritis. Hypertension; congestive heart failure; glaucoma (or a family history of glaucoma), previous steroid myopathy or epilepsy. Liver failure.

Corticosteroid effects may be enhanced in patients with hypothyroidism or cirrhosis and decreased in hyperthyroid patients.

Diabetes may be aggravated, necessitating a higher insulin dosage. Latent diabetes mellitus may be precipitated.

Menstrual irregularities may occur, and this possibility should be mentioned to female patients.

Rare instances of anaphylactoid reactions have occurred in patients receiving corticosteroids, especially when a patient has a history of drug allergies.

All corticosteroids increase calcium excretion

Aspirin should be used cautiously in conjunction with corticosteroids in patients with hypoprothrombinaemia.

This product contains 15mg/ml benzyl alcohol and must not be given to premature babies or neonates. Benzyl Alcohol may cause toxic reactions and anaphylactoid reactions in infants and children up to 3 years old.'"

It says the half life is 88 minutes - but I thought it was more like a pred or dex type med - in which case it was more like this "The half-lives of the injection amount in the vitreous, 4-mg TA-PF, 16-mg TA-PF, and 4-mg Kenalog, were found to be 24 days, 39 days, and 23 days, respectively. " I found that on pubmed. In which case 18 days was too soon.

Re armour - you should never take more of a prescribed (or OTC) med than mandated - and thyroid meds can effect the heart so.... ah... while I would personally like my levels to be higher - I still like a T4 T3 mix to get it up there.

[kevieb]

i've been going nuts trying to look up info--and so much of it is contradictory.

where did you learn about the proper protocol for the ACTH stim test/  i've read it online, and my first endo insisted on fasting and soecific timing of blood draws--i don't know about the chilled and frozen part--but i kinow they letf with the sample immediately.

i've hear others say it doesn't matter if you are fasting and that it can be done any time of day.  and of course, there is the differences in looking for doublinng of baseline, or looking for levels over 20.  the test i have specifically states it was looking for levels of 20 or over.

are there other things that could make my cortisol low (6.3 and my ACTH low (9) before the kenalog shots?

Do you think the kenalog shots 18 days before the stim test could have made my stim test completely unreliable?

my original thyroid tests with the first endo showed low T4, low TSH and low T3---all were "within range"  but on the pretty low end of the scale.

How did you find an endo you could trust--i know you sid you drive 6 hours to get to one.

[kevieb]

i am getting so discouraged. i called the office of the local intern and talked to his nurse.  she said he knew as much about endocrinology as the other interns.  i explained my situation with two conflicting diagnoses and that i wanted to be tested correctly again.  she said she would run it past the doctor and get back to me.

i just don't know where i can find help anywhere close--nor do i know who to see in the big cities 3 hours away. i guess this is why i am considering taking a chance on the doc in conn.  my sister trusts him and he has helped my niece.

I suppose i could always try the original endo iwent to---she has moved 3 hours away----maybe she has a more organized office now.  she has to have a new staff that she works with.  May there is a good office manager that keeps things in line.  the lady seemed to know a little more about what she was doing.  but i never felt any better.

are you a believer in treating with the higher doses of armour until the symptoms go away---regardless of what the tests say?

what do you feel are the most accurate tests?

[rumpled]

I think the UCLA endo is correct - that is my opinion.
I have read that book and seen the site. I do not find it credible.

[kevieb]

had to run my daughter to school

are you familiar with the "Stop the 'Thyroid Madness" website?  I ordered the book from that site, and the gal's info is similar to the things that the doc in Connecticut talks about.  

when she was giving info on how to find a good doctor, one recommendation was to find a  Broda Barnes trained doctor.  The doc in Conn.  works closely with the Broda O. Barnes Foundation and is on their list as a guest speaker for their next seminar.

[kevieb]

i've gotten some really conflicting info over the last couple of days.

Ihave talked to and endocrinologist at UCLA on-line and i have talked to some lab on-line and asked about how to test correctly.

the enod on-line said i needed a correctly done stim test--that the one that was done recently was wrong and that my original endo was right and my diagnosis was right--secondary AI--but if he felt my original diagnosis was right i'm not sure why he would tell me to get tested again----if i can find a doctor to test, i would think i could just take my original blood work and stim test report in and the docs report and they would go ahead and treat me---i guess a doc might want their own tests?

the person from the lab said that the way the stim test was done, with the two day old cortisol test for a baseline should show whether or not my adrenals were being stimulated if my numbers went up a few fold--what's a few fold????  she also said if they were lower or near the same it would mean i had a problem--and she said i didn't need to be fasting. i wrote back and said they didn't test my ACTH levels--even if my adrenals will react to being stimulated, if i don't have enough ACTH, i'm not going to have adrenals that are stimulated.  i asked her if this was correct thinking.  i'm waiting for an answer back.

the doc i want to go see wants to do the hormone panel--but i think it is a 24 hour urine test---won't that just show my total cortisol levels for the day?  is that sufficient to show if i am not producing enough cortisol?  If i'm not, will it matter if they know how much i am producing at different times of day as long as i am dosed correctly and at correct intervals?  or do i need to do a 24 hour saliva test?

i talked to one of our local ER docs that i know and asked about a new internist we have--he confirmed that he had also heard that this gus has taken an interest in endocrinology.  but the doc i talked to did not know anything about the how the stim test was supposed tome done--he just didn't know much about AI.  he didn't think i needed to worry too much about adrenal crisis because he had never seen it happen.

UCLA doc told me i needd to be concerned.

[rumpled]

Post after you have had some testing and let us know how it went.

[kevieb]

i guess i'm hoping that since he is a regular MD, even if he believes in adrenal fatigue, that he will make sure to see that we either rule in or rule out the actual secondary adrenal insuffficiency.  if he doesn't do it on his own---i will insist on a correct stim test if i haven't already had it done.

[kevieb]

i've told him that i was diagnosed with secondary AI.  he sent me info to get started and mentioned that since cortisol deficiency could be a possibility he thinks it would be a good idea to do a hormone profile

since it may be a little bit before i can work out the details to get me there, i may see if i can get a local internist to run an ACTH stim test to see what my adrenals are doing.  i found out we have a new internist that has taken an interest in endocrinology.

A doctor that belives in adrenal fatigue would do me more good right now than the endocrinologist who says my diagnosis of secondary AI was wrong and pulled me off the meds.

i try to ignore articles about adrenal fatigue---especially since it seems to be all the rage right now---but when i think about it, i think there could be some truth to it.  since my levels were low enough to show on a blood test i could get an actual diagnosis, from the first endo, at least.  but, if there is a range of 5-25, and they recognize insufficiency below 5, i would think that i would have been feeling symptoms when they were 5,6, or 7--but that is within range, so they would say i was fine.

i remember feeling a bit frustrated when my girls were first diagnosed with celiac disease.  they were diagnosed with the Ttg test---so there was no question that they had it.  but, gluten free was becoming a fad at about the same time.  i had a doctor's wife try to tell me that if my girls didn't get sick when they ate gluten, that they might not really have celiac disease because it was a really popular diagnosis.   people were talking about gluten intolerance without having actual celiac disease alot.  it was in the magazines all the time.  well, 6 years later, the celiac specialists are now acknowledging (SP?) that there is a gluten intolerance that is not celiac disease.

[rumpled]

A doctor like that is likely to be an adrenal fatigue proponent - not an adrenal insufficiency doctor. There is a difference.

[kevieb]

talked to the doc in connecticut by email-----getting things in the works to see him

[kevieb]

I'm going to email my sister's doctor again today.  He had told be to call a lady at the Broa O. Barns MD Research Foundation.  He works closely with this foundtion, it is an endocrinology research group.  he said they have a list of doctors that have attended their seminars or presentations or whatever it is they do to geth their information out about how to correctly treat and balance the endocrine system.

I just can't seem to get through--their phones are busy, it took almost 2 weeks before my message got returned----and i was gone--so all i got was a message back!!!  i guess i'll be playing phone message tag for awhile until we can get connected.

In the mean time, i am running a little nervous.  I talked to the endocrinologist online again and asked him if i could trust this second doctor, or if i was a walking timebomb with weak adrenals just waiting for the wrong stressor to put me into adrenal shock and asked him if i should be concerned.

He said, yes, you should be concerned, your first diagnosis was correct, your first endo was correct, you need to have a stim test done (the right way) and he said i needed to have my pituitary checked if i had low ACTH.

so......i'm trying to figure out who in this little town i can get to help me for now.

[rumpled]

Hopefully your sisters doctor is better. You do need a good one.