Adrenal Insufficiency Support Group

At my wits end with Dr's and my health. I have recdently been dx with Hashimotos and on synthetic T4 replacement for 10 weeks wiht no improvement. NOBODY had checked my adrenal function and my Endo refuses to as he states my blood pressure is ok so "nothing wrong with your adrenals". Honestly....dr's ******

I have been sick for 20 years or more and was a sickly child with anemia and always tired, chronic growing pains. Things just keep getting worse, more and more problems and more diagnosis for different conditions.

I have also been dx with Chronic Fatigue Syndrome, Fibromyalgia, Chronic Stress Immune Response, IBS, Alopecia, Food & Environmental allergies. I dont believe all of these conditions are stand alone problems, I think these dr's are all missing something and from my research I think its an adrenal problem.

I would be so very grateful for input and advice, I am in a very dark place and scared.

Female, 44, no children.

Exhausted

Startle so easily, any unexpected noise makes me jump

Shake from head to toe in any stressful situation

I cant think straight, forget my words

Hair Loss (difuse, not pattern balding)

Losing eyebrows, eyelashes

Heart flutters

Chronic anxiety

Depression

Black circles under my eyes

Chronic eye floaters

Worsening food and environment allergies

Lightheaded

No appetite

Alternating constipation/diarhea

Abdominal pain, bloating

Wired but tired, cant sleep or sleep too much

Can you help me please! Does this sound like AI? What tests do I need to confirm adrenal problem? In Australa and I know after seeing so many different dr's that they just dont consider adrenals. Has anybody had any luck with Holistic Dr's?

A huge thank you in advance for any advice, I am seriously losing my mind and will to live!!

Post edited by: OzDee, at: 06/28/2011 10:23 PM

Hello, and welcome

I am new here also, however I wanted to say that you have come to a great place to find support. The folks here are fantastic. I am also stuggling with understanding all this stuff.

You are not alone.

You are going to be ok....I have many of the same symptoms you do and I can tell you I understand how scared you must be. The great thing is that you are being proactive and by educating yourself you will play a big part in your recovery!!

This is a good place to come to find people that are going thru what you are...

It will get better....lots of folks are here to help..

Welcome to both Bailey and OzDee, glad to have you join us. Oz, I'm sorry you are not finding help but unfortunately this is a common occurrence here on the board. I can tell you that all the symptoms you listed, and more, can be caused by adrenal insufficiency. It is time to find a new doctor. Many of us have to go through three or four doctors to find the help we need, but this is life threatening and you shouldn't let someone brush you off. I had secondary AI caused by a pit cyst but it was causing me to have high blood pressure. It wasn't till I got treated and my adrenals stopped pushing out adrenaline that I began to notice low bp if I went too long between doses of the corticoseroid (I'm on prednisone).

I can also tell you that some of your symptoms sound like thyroid - especially losing eyebrows and heart flutters. But thyroid does take a while to respond, so docs are slow to up doses quickly. I know after I began synthroid it took me about 4-6 months to really notice a difference. Now a year later, I have a significantly better quality of life.

Get a second - or third - opinion. Bob do you have any comments about docs in Oz?

Deb

Welcome OzDee & Bailey,

Your experiences with mainstream doctors is not uncommon. Most do not recognize adrenal insufficiency as a diagnosis if your adrenal blood tests are "borderline" or within what they deem as "normal". Endocrinologists tend to see the ACTH and cortisol blood tests as black and white which leaves many people without treatment.

Find a doctor who thinks outside of the box about hormone issues, adrenal insufficiency, chronic fatigue or fibro. Search the internet and medical community in your area.

I went through 3 doctors/endocrinologists who wouldn't treat me. I found my doctor listed as a specialist in chronic fatigue syndrome, but she actually treats many hormone imbalances, adrenal insufficiency, fibro, CFS, autoimmune diseases, etc. There are many overlapping symptoms between these illnesses, and many doctors will just lump you under CFS when they don't know what is really wrong.

Keep searching and advocating for yourself until you get the help you need!

Best wishes,

Anna

Bailey, ITteach & Anna, "thank you" all for your replies and support, I really appreciate it! Its so nice to talk with others who understand, my poor family is plain worn out so I try not to talk about it anymore.

"Exactly" right about dr's giving a diagnosis of some sort of "syndrome" when they just dont know but their ego's feel like they have to dx something! I have at least 3 "syndromes" now and I dont believe any of them. I have been to so many different dr's and specialist in my 20 years of searching and have heard it all. I finally found a GP who is happy to work with me but sadly his knowledge about these sort of things is very limited. But he will happily request bloods I want to do so that is helpful.

After doing more study on AI I am more confused then ever with which test I need. One off blood tests dont seem to be very accurate due to the daily cortisol fluctuations and the 24 hour urine test just gives a daily average and I believe you need to know the daily ranges. Saliva cortisol and DHEA'S testing is available from a functional pathology here but you need a dr's request to get them and a GP who can interpret the results. Mine isnt registered with them to request the test and he wouldnt be able to interpret results. So I guess I need to find "another" dr who can. I am thinking maybe a holistic dr? I dont think I can stand going thru the mainstream people anymore. Then there is the ACTH stim test? Wow, I am confused!

Can somebody explain the tests for me please? And which one I should start with? Thanks so much.

Thanks ITteach, very encouraging to hear the synthroid assisted you and that it took that long, I hope it kicks in for me. Only been 10 weeks so glad to know it can take months and not weeks to have a benefit. Is synthroid T4 only or a combo? Sorry, different names in Oz for meds. Oroxine is T4 only here and that is what I am on. I disucssed natural thyroid meds with the Endo but of course he just looked bemused and stated it is an outdated med. The debate rages about thyroid treatment too so wont even start on that one!! It took so many years to get a dx of Hashimotos and the meds, praying they help.

Thanks again to you all for your help.

"BOB", I believe you are a fellow Ozzie! I would love to hear from you if you get a chance to reply.

You need a cortisol blood test - early morning is best as that is when it should be at its highest level naturally, so a deficiency should be evident. If that comes back cortisol low, then an ACTH stim test will find out if it is secondary, or primary.

It is not unusual to find medical professionals who do not understand adrenal insufficiency, this is common. Even today, I went to my endo for a regular checkup and saw the physician's asst. She has all the doc's records in front of her and on my way out I saw she wrote "Addison's" as the diagnosis - I do not have addison's, I have secondary AI caused by hypopituitarism. I myself did check in with an integrative doctor to get assistance in reaffirming what I already knew - that I needed the thyroid supplement...but still had to do my own research and find medical journal articles to prove the case to my endo, since I wanted to stay under his care.

I hope you get some help soon.

Deb

Thank you very much ITteach, that helps a lot. I will get my GP to start with the blood test, and go from there. At least that one will be easy enough to arrange, thank goodness for that.

So glad to have found this site and such helpful members, what a god send!!

Thanks again

I'll just mainly say hi at this at this stage. I have been a bit busy of late and am catching up on the backlog. (Dee, think Centrelink...)

My endo is pathetic, my GP knows far more than him.. He also teaches at UNE and was an excellent find. He can discuss pretty well all of steroidogenesis both at a chemical and symptom level. My AI diagnosing doctor was actually a cardio (Hornsby) that very much thought outside the box. Manly Hospital ED is (or rather was) staffed by idiots... They couldnt detect that I had one symptom set masking another.

There are few paths to go down through testing diagnosis. The most common as Debs mentioned is a morning cortisol. Like most testing though it is statistical and some unusual states can still get through. The biggest leap you usually make is that anything above the statistical mean (Above about 450nmol/l) but below maximum can't be AI, whereas anything below the mean and min ref range needs further analysis if symptoms exist.

The relationship between blood sugar and cortisol is also important. Generally speaking low sugar should cause elevated cortisol.

After AI has more or less been established the next effort is to find out what gland is the culprit. The ACTH stim test proves primary vs not. Tertiary is pretty rare so CRH stim testing isnt done often. Sometimes adrenal and pit MRI's are then done. It depends on what is found from one test to the next.

Blood sugar/cortisol relative and stim testing are not simple blood tests. They require injections and multiple draws. Medicare wont normally pay for a GP to request these tests. My GP however recently wangled a HbA1c (kind of blood sugar level average for last three months used mainly for diabetics to set insulin injection baselines) I dont suggest you get this test for DX reasons, for me it was for dosage feedback regulation.

You are light headed and your BP is okay?

Maybe I have answered enough already (or too much...). Feedback pls.

Bob

Thanks Bob, this info really helps me to understand the process of testing. I will ask my GP to arrange the am cortisol test and go from there. Sounds like I will be looking for my "3rd" Endo, good grief, this is such a drawn out and tiring process.

Thanks again Bob, really nice to meet you!

Dee