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Old 07-10-2008, 04:26 PM   #1
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How would you know if you are having adrenal problems as primary?

On an earlier post (I am a newbie), I spoke of the difficulty I am having getting my meds right. I am "technically" hypo now (after RAI), but I am still very shaky and hands and fingers tingle often and I am really wiped out. Total t-4 within "normal" limits, TSH 1.7 and total t-3 was high. I will try to get the Dr. to order Free t-3 and t-4, but in the interim, I am trying different combinations of synthroid and armour and am wiped out. The Dr. also is having me take Toprol for the shakiness, but I am concerned that the Adrenals may be more involved. She has not mentioned adrenals, at all.

I did do the saliva test that an accupunturist I am seeing recommended and the results showed within normal limits, except for late afternoon, when the level was a little low.

This has been such a roller coaster and I want to make sure I am at least looking in the right direction or any other direction.

Thanks

 
Old 07-10-2008, 06:37 PM   #2
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Re: How would you know if you are having adrenal problems as primary?

That is simple if you wade through the technical goop.

Primary adrenal insufficiency is when the adrenal glands are affected. Secondary is where the pituitary is to blame.

So you look at your ACTH the pituitary's call for cortisol and your cortisol levels. If the ACTH is high.. and cortisol is low. The adrenals are physically unable to answer the functional call of the pituitary gland for more cortisol. This is known as primary adrenal insufficiency. AKA Addison's Disease. If however the ACTH is low and the cortisol is low then you have to look at the pituitary gland and its function. When the adrenals are not functioning because the pituitary is not doing its job.. you have secondary adrenal insufficiency.

Adrenal glands can die due to being overworked, attacked by your immune system, and a few other factors. Long term untreated hypothyroidism and ACA (anti adrenal cortex antibodies) are the main source of primary adrenal dysfunction.

So I recommend you check your ACTH. Having the saliva cortisol is a good thing. Being low in the afternoon is more indicative of adrenal fatigue.. but it could be an early state of autoimmune adrenal dysfunction.. but it could also be stress, diet, and/or poor sleep. To rule out AI attack the ACA blood test is the way to go.

I just walked this route and determined my primary adrenal insufficiency a couple of months back. Thyroid dysfunction is one of the leading causes to adrenal dysfunction. So you really need to get that fully evaluated if you do not have a clear cut case of primary or secondary adrenal dysfunction.

Good luck and keep us posted.
MG
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Last edited by mkgbrook; 07-10-2008 at 06:49 PM.

 
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Old 07-10-2008, 06:48 PM   #3
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Re: How would you know if you are having adrenal problems as primary?

I don't know anything about adrenal issues, but my endo told me that a side effect of RAI could be shaky hands. I don't know when you had your RAI, so that might not be it at all. I hope you get some answers soon.

 
Old 07-11-2008, 10:19 PM   #4
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Re: How would you know if you are having adrenal problems as primary?

MKG-That was an interesting post about adrenal insufficiency. I recently did a 24 hr. cortisol test.
cortisol URN 9.2ug/24hrs. ref. range 3.5 to 45
cortisone URN 70/ug/24 hr (note expected values 17-129

My cortisol def. seems quite low , though the cortisone is more mid range. Could you explain about the cortisol and cortisone connection. I think I should ask my endo on Mon , at my next visit to test the antibodies to see if adrenals under attack. What tests do you think I should ask for besides the antibodies test , I think you said ACA.It was actually the bone spec. who did the cortisol test.

What you said about hypothyroidism being one of the leading causes of adrenal insuff. /failure is just one more bummer.
I recently had a lip biopsy for sjogren's and have been advised that I have secondary sjogren's probably due to the hashimoto's and that while my blood tests to the anti bodies for sjogren's were neg. that prob I should have them re-tested in a few years and take all due care with mouth and eyes to be hydrated as best as possible. It seems that I am falling off some AI cliff.My eyes are sooo very dry, I have punctal plugs in the bottom ducts and use restasis and still a misery. I am going to eye spec. who knows sjogren's soon and maybe he will be able to help.

Still awaiting the appt. with the second opinion doc with my 3 cm neck mass (also called neck mess). First opinion doc says take out mass and rt lobe and while on op. table pathology looks over the stuff to see if malignant. If malignant left lobe goes too. If not malignant left stays.What I don't understand with first doc is why she isn't even talking biopsy. I guess she thinks the 3cm and right lobe have to go anyway and biopsy would be inconclusive would that be right??

Right now I am in diagnostic hell---I really don't know if the mass is part of the thyroid , or lymph gland or something else. The ENT was really annoying and fast with me, she ordered tests ct and sestamibi and when those results came back her only message through my pcp is that the test results do not change her surgical plans. But, that doesn't tell me what is going on. I am not going to have her do the surgery , I think I should get a copy of the file and see what her notes say don't you??

I know the univ. doc will be better, I have heard good things about him. The ENT is supposedly a great surgeon but her bedside manner is the worst and I can't go under her knife becau se of this and her failure to explain what is going on.

I sure hope you see this message and respond. I am in a bad way at this time and it always helps to get some insight from you.

 
Old 07-12-2008, 12:22 PM   #5
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Re: How would you know if you are having adrenal problems as primary?

MKG-That was an interesting post about adrenal insufficiency. I recently did a 24 hr. cortisol test.

cortisol URN 9.2ug/24hrs. ref. range 3.5 to 45
cortisone URN 70/ug/24 hr (note expected values 17-129

So you did an average urine test for cortisol and cortisone levels. The urine test is more accurate than the blood serum, but it give you an average over a set period of time... the saliva test is more accurate than the blood serum and allows for you to see what your cortisol levels are at different times of the day. You could have adrenal fatigue and have really high cortisol/cortisone in the morning and none at night.. or vice vesus. In an average urine collection set.. this may not be detected. If you had individual urine samples at various times of the day.. you would be able to get a comparable result to the rhythm saliva test.

My cortisol def. seems quite low , though the cortisone is more mid range. Could you explain about the cortisol and cortisone connection. I think I should ask my endo on Mon , at my next visit to test the antibodies to see if adrenals under attack. What tests do you think I should ask for besides the antibodies test , I think you said ACA.It was actually the bone spec. who did the cortisol test.

I would say ask for the endo to run a cortisol saliva test and ACTH and ACA. This will tell you if you have AI attack of the adrenals as well as if the pituitary gland is effecting the adrenals adversely. The rhythm saliva cortisol will give you a cross confirmation on your adrenal function at set points through out the day.

This is the method I used with my IMs help to get my answers.

What you said about hypothyroidism being one of the leading causes of adrenal insuff. /failure is just one more bummer.
I recently had a lip biopsy for sjogren's and have been advised that I have secondary sjogren's probably due to the hashimoto's and that while my blood tests to the anti bodies for sjogren's were neg. that prob I should have them re-tested in a few years and take all due care with mouth and eyes to be hydrated as best as possible. It seems that I am falling off some AI cliff.

AIs result from a genetic predisposition to have an over active immune system that when left alone gets bored and starts looking for things to attack. Allergies, endemetriosis, and a few other more common conditions are mild AIs.. Hashimoto's is just another flavor. I have extremely dry eyes and my jaw gives me a lot of issues these days. I use Patenol and genteal tears lubricant in my eyes to combat the allergy factor and general hypoT dryness. I hate dry eye because we can not live and function well with our eyes closed all day. Some days I want to keep my eyes closed all day. You are not alone there and I hope that your dry eye is just a function of hypothyroidism.

My eyes are sooo very dry, I have punctal plugs in the bottom ducts and use restasis and still a misery. I am going to eye spec. who knows sjogren's soon and maybe he will be able to help
.
Let me know how this goes. I would be interested in knowing any advice for dry eye this MD gives you and wish you the best for treatment from him.

Still awaiting the appt. with the second opinion doc with my 3 cm neck mass (also called neck mess). First opinion doc says take out mass and rt lobe and while on op. table pathology looks over the stuff to see if malignant. If malignant left lobe goes too. If not malignant left stays.What I don't understand with first doc is why she isn't even talking biopsy. I guess she thinks the 3cm and right lobe have to go anyway and biopsy would be inconclusive would that be right??

I believe you have it in a nut shell you were having level stability issues and obstruction issues. Thus the 3 cm mass is the mostlikely cause of the breathing obstruction and should be removed. Now leaving the other multinodular lobe is sometimes done because the MD believes it is better for you to have some of your own thyroid hormones than none at all. That is just one more debate out there. In the case of Hashimoto's patients. As long as there is active thyroid tissue your body will strive to kill it. Biopsies are not 100% there is always a chance of a false positive. the only way to rule out cancerous growth 100% is to remove the nodules and lobe and biopsy it completely.

Right now I am in diagnostic hell---I really don't know if the mass is part of the thyroid , or lymph gland or something else. The ENT was really annoying and fast with me, she ordered tests ct and sestamibi and when those results came back her only message through my pcp is that the test results do not change her surgical plans. But, that doesn't tell me what is going on. I am not going to have her do the surgery , I think I should get a copy of the file and see what her notes say don't you??

It won't hurt to get the copy and look it over. It is good to have a complete data set for review before you make your decision. I do not think that the adrenal issue should make that much impact in your decision to do surgery on the mass. Given the situation you could request an FNA, but a PT would be the most definitive way to determine the state of your thyroid masses.

Just keep your fingers in the mix and keep working at it. I am wishing the best of luck.
MG
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Old 07-12-2008, 01:48 PM   #6
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Re: How would you know if you are having adrenal problems as primary?

Thank you dear MG-It just helps running it by you.You seem to be the beacon in this darkness. You need to write a book --like Mary Shomon did. I will def let you know what the opth. says. Do you have punctal plugs yet, are you using restasis? I think the only next step he will have is to plug the top ducts , see how that goes. I have heard sometimes the top plugs don't like to stay in and then they use cauterization to scar the tissue to close the duct. Great! Anyway gotta preserve moisture in the eyes. It can get real bad for some people and cause corneal erosion. So it is very serious. In the closest large metro area , there is a sjogren's support group that seems very good . And, they pointed me to the univ. of wa study I will be part of and the docs there have already over the phone given me lots of info about sjogren's and various theories they have and on Mon I go for their test-which collects saliva and they examine the oral mucosa. With my lip biopsy and hashi's and parotid swelling, extremely dry eyes --they say it is secondary sjogren's.
On the adrenals- I will ask for the tests you recommended and go from there.What do they do though if adrenals under AI attack--don't you think this has something to do with my super high antibodies first over 2000 now over 1200. I think you once said ,over 1000 look out for more AI. What do they do if your adrenals fail? Is there something like synthroid for adrenal supplementation?If it is corticosteroids that is supposed to be very hard on your bones and mine are already quite in trouble.
I hate to be on the op table on a respirator under gen. anesthesia while they do the biopsy. I think why not do the FNA and if positive for cancer then we all know its TT, if inconclusive well then I wait on the table. It is possible the FNA could just give some prior info and cut down on surgical table time--isn't that so as well?Even if negative , the mass apparently now has to go. Somehow the hashimoto's reactive lymph node theory has gone out the window. Would this tweak you just a bit? I have lost any trust in my med team with this turnabout. Therefore the second opinion which will happen real soon should help. The trouble is I really don't think I got a first opinion. And my insur. only allows for a second opinion.
Oh also the sestamibi said very little functional thyroid tissue to take up the thyroid pertechnetate tracer. So, I guess this means my thyroid is near dead.
And, it clearly says no parathyroid adenoma seen in the right lobe to explain the 3cm mass.No abnormal extra thyroidal activity. And--
"The abnormality reported on ultrasound was large enough that if it were a parthyroid adenoma it should have been obvious on this nuclear medicine scan. That indicates that malignancy would be a consideration"

A malignancy of what I am wondering????
Of the thyroid, of the lymph gland of ....I am just asking who are the suspects. It doesn't seem to be the thyroid because they are not talking any nodule as their focus.
And, ultrasound says
again noted in the right anterior neck apparently adjacent to the supralateral aspect of the right thyroid is an app. 3x1x1 cm hypoechoic, solid , lobulated hypervascular mass like structure .......this may be exophytic from the thyroid or adjacent to the thyroid. .At least a portion appears separate from the thyroid because a soft tissue plane is seen between it and the adjacent thyroid...
I know we covered solid, hypoechoic etc...
But what the H do you think this could possible be shaping up to be..
My mind goes to lymphoma..
It really seems it is not so much the medical situation---heck so many are afflicted by so much --we all have bodies and this stuff happens it is a given. It is the poor-unsympathetic, cold, impersonal , rude , abrupt delivery of treatment that has me tensed up and we know that is terrible for people with AI issues.

I just would like to know what is going on and not be fobbed off with some anti anxiety med. But, I can def. say this has amped my anxiety which is awful for the antibody count and my tmj.
I am only 55, I hope something starts to get a wee bit better soon. This downward slope has got to plateau sometime doesn't it??

 
Old 07-12-2008, 02:34 PM   #7
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Re: How would you know if you are having adrenal problems as primary?

On Armour, your TSH should be VERY low.

On the day they draw your blood, do NOT take the Armour that day until AFTER they draw your blood (ot the FREE T3 will look very high).

If you take the ARMOUR & then have them draw your blood---the FREE T3 will come back very high.

If you took your ARMOUR before they drew the blood for this test...thats why your FREE T3 tested so high.


I don't even have me TSH tested anymore, because I know it will come back very low. I must test my FREE T's (before I take my Armour that day). and shoot for those numbers to be in the middle to upper part of the 'normal range'.
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Old 07-12-2008, 03:19 PM   #8
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Re: How would you know if you are having adrenal problems as primary?

Osteo,

Given the US results you listed. You are at higher risk for that nodule to be cancerous, from what I could find on classifications and US descriptions.

I think you should go for the removal.. I would in your position. However you should ask your PCP or any other experienced family about it. Think about it.. because once it is done it is done. They can not stick those thyroids back in. In thyroid cancer if it is beginning to spread, near by lymph nodes are the first boundaries crossed. As a result that adds to the suspicious behaviour of your thyroid.

So given all the factors I would want a very experienced MD... if I was in the same boat as you to put me under look over the lymph node and thyroid and do at least a PT if not a TT. But that is just my personal opinion.

I am wishing you well and clarity of thought. I am not at the top of my game because I caught salmonilla, then a respiratory virus.. and now I am treating my sinus infection secondary infection. They gave me a new antibiotic to try and I seem to be developing the lovely side effects of nausea, joint pain, and joint blisters(ARGGHHH!). I am giving the antibiotic another day.. but if the side effects (blistering in particular) spread.. I am calling my SIL for a different script. UGH! I will try and keep checking in as long as I am not hanging out in the bathroom.


MG
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Old 07-12-2008, 05:39 PM   #9
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Re: How would you know if you are having adrenal problems as primary?

MG -Thanks for taking a look at my mass/mess despite your physical challenges at the present time. I soooooo appreciate it and can't begin to tell you how much your responses have helped me.
I do not take your comments as anything other than a fellow sufferers' opinion based on what I wrote of the reports. Obviously when the sestamibi report says malignancy would be a consideration--well it is a consideration.
Sure wish it weren't so-but after reading this board for awhile I certainly know that I am not alone and that helps too esp for what will likely come down the line.
When you have a moment , given what I have gone through with the diagnostic whiplash-would you feel very disappointed with your team ?? Because really, what was shown on the u/s 3 mo. ago and said to be hashimoto's reactive lymph node and said to def. not require surgery , is now obviously being looked at differently and surgery recommended.
Diagnostic whiplash
Flip Flop
Leaves a patient very confused!And, seems like my trust in my team pcp, endo and ent is destroyed.

Last edited by osteoblast; 07-13-2008 at 03:09 PM.

 
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