|
Post by corky21 on Dec 29, 2008 9:15:36 GMT -5
Hello,
I am new to this thyroid/adrenal issue. I've received great advice so far on the thyroid, adrenal, Armour and cortef stuff.
Now I'm concerned about hypopit. I'm reading today a few posts and one in particular caught my attention. A poster had low ACTH and low cortisol blood levels and a moderator said she should check with Chris re: hypopit and getting tested. She said those tests showing low numbers could be a hypopit.
Another poster told me I could be hypopit as well. The 3rd doctor I saw for my symptoms didn't write up any more blood work or tests. He just gave me the Armour and Cortef and said to come back in 3 weeks.
I'm going to email him a request for more tests. What should I ask for. I heard of the ACTH stim test, but I read somewhere that if you have been taking the Cortef that test won't be viable. Is this true? Can I ask for that test even though I started the Armour and Cortef last week?
Also I was hit with a baseball bat 40 years ago. No major symptoms since that time until the last 2 years. I did have an MRI and MRA 2x on my head for another reason. The radiologist noted some small masses I believe they said in the back area of my head. Some were thought to be aneurysms. I went to a top aneurysm surgeon in NYC and he said they were not aneurysms.
Another poster on this site said maybe those masses were on the pituitary. But wouldn't this surgeon say so. Maybe not. Should I get a copy of that MRI report and send it to my new doctor and ask him if those are pituitary masses?
So in closing: my ACTH (8 am.) was 9.9, Cortisol 17. Can I ask for that ACTH Stimm test while I've been taking the Cortef?
And, should I get a copy of that MRI and send it to my new doctor?
And, what other tests should I ask for to check the pituitary?
Thanks,
Colleen
|
|
|
Post by justaustin on Dec 29, 2008 12:28:45 GMT -5
Colleen.
So you already have documented low ACTH and cortisol... Are you still taking bio hormones?
LH/FSH with individual sex hormone leves including testosterone and free testosterone levels. IGF-1 with Growth hormone DHEA-S (should have had done prior to HC, this will decrease with HC d/t further decr ACTH) Prolactin Oxytocin/Anti-Diuretic Hormone(ADH) Good to have Aldosterone and Renin(follow Chris' sticky for test preparation).
Should have MRI of pituitary with and without contrast (Gadolinium) to rule out adenomas/microadenoma's. The pituitary stalk will be viewed with the study. This tiny thread of vessels connects hypothalmus and pituitary. Whiplash injuries,head injuries are enough to damage this stalk, even result in deviation. This can result in deficiencies. Keep in mind that most hypopit's have "normal" appearing pituitaries. This DOES NOT rule out being hypopituitary.
I would get a physical copy of the MRI film(s) in addition of your report. They can use your baseline for comparing should it be done at any other radiology center. BTW, not all surgeons are the same. Pituitary surgeons and neurovascular surgeons for example. There are subspecialties.
Laurie
|
|
|
Post by corky21 on Dec 29, 2008 14:01:12 GMT -5
Thanks Laurie.
My endo MD had already taken the LH, FSH, DHEA-S, Prolactin and the IGF-1. I never got the results of the IGF-.1 It said it was to be hand delivered and I never was able to get a copy. Below are the ranges:
LH 23.3 (1.0-11.4) Luteal phase FSH 19.5 (1.7-7.7) Luteal phase Prolactin 6.3 (4.79-23.30) --non pregnant DHEA-S 142 (12-379)
I believe these are all within normal ranges. I think I was in the luteal phase when this blood was drawn b/c I got a period exactly 7 days later. But then, I hadn't had a cycle in over 4 months. So I could be wrong.
Should I request these same tests again. I will add the IGF-1 and the Oxytocin to my email request. Is there anything else.
Also I'm still reading the Adrenal Fatigue book and it seems Dr. Wilson believes in using Adrenal extracts over the bio cortisol unless one has severe adrenal fatigue. I asked my new MD about some OTC adrenal and thyroid builders to start with and he said why waste your time. Go for the big guns first and see how you feel. As you can see I'm still nervous about taking the Cortef.
Also I have a weird taste in my mouth today since taking my 5mg Cortef this morning. I've rinsed, eaten, etc. and still remains. Kind of metallic tasting.
My endocrinologist didn't even mention the low ACTH test or low Vitamin D to me. Those were the only two numbers that under the abnormal range column.
I'm going to plow on with this for now but at the lowest doses. I'm now taking 10mg and I'll ask the doctor if I can take another 5mg when I increase the Armour tomorrow to 60mg.
|
|
|
Post by justaustin on Dec 29, 2008 14:38:46 GMT -5
Be sure to get growth hormone level with IGF-1.
If memory serves me correctly, Phil and Chris indicate that DHEA-S should be in top third of reference range. Your's less than half of range.
Big difference between adrenal fatigue and secondary adrenal insufficiency!! You clearly have a signaling deficiency(pituitary)as evidenced by low ACTH and low cortisol. Plenty of folks have indicated this in their responses to you (here and RTH forum).
Some meds can have a side effect of metallic taste(metformin is one I am familiar with). You can check with your pharmacist to see if it is associated with Cortef. It may improve after being on it. Have you tried some sugarless chewing gum?
NORMAL AND OPTIMAL ARE NOT INTERCHANGEABLE!! Normal reference ranges are based on 95% of the population. ASS-U-ME that's correct. That means you have to be amongst the other 5% of population be be considered abnormal.....
Laurie
|
|
|
Post by fractal1 on Dec 29, 2008 14:53:08 GMT -5
Hi Colleen, I just wanted to add that for pituitary assessment you need to get LH / FSH tested on day three (as opposed to day 21) of your cycle. Any day is okay if you don't menstruate at all. These need to be tested along with sex hormones: - estradiol - free testosterone or FAI (free androgen index) - progesterone (though not essential) - DHEAS
|
|
|
Post by corky21 on Dec 29, 2008 19:13:35 GMT -5
Hey Justaustin,
Yes I keep seeing responses from members here about the pituitary link with my low ACTH and cortisol. But I still can't get the gist of it. If that is indeed the problem, then should I be taking Armour and Cortef or something else? I'm surprised my newest expert MD didn't mention that after reading all my blood stuff. Nor did the expert endocrinologist I saw first. If it is indeed a pituitary problem, then would that mean that I would need to stay on cortef for life? Does that mean that the adrenals will not heal at all b/c of a pituitary problem? Are there long term members here with this pituitary problem that are doing well on long term treatment?
Sorry if I repeat myself; it's one of my many symptoms (loss of memory)
|
|
|
Post by justaustin on Dec 31, 2008 14:03:07 GMT -5
Colleen,
Most endos are good at managing diabetes. Most docs have difficulty thinking outside the box.
I took care of a patient who ultimately had Autoimmune Polyendocrinopathy. She had Type I diabetes, hypothyroidism and Celiac. She had tight control of her diabetes and gluten free diet. So when she developed Wt. loss,nausea, shakes she knew it wasn't due to diabetes(although impacted it). She figured it was something endocrine related. She went to endo repeatedly..... He missed her having Primary Adrenal Failure (Addison's). Her primary doc diagnosed her.
With Secondary Adrenal insufficiency, you have a deficiency with the central signaling as part of the feedback loop. You need to replace the hormone of the targeted end organ (adrenals/cortisol). It doesn't matter if adrenals will heal if they will not be properly signaled by the pituitary. Yes, this is for life.
You need medical alert bracelet too. "Adrenal Insufficiency. If found unresponsive or in accident, give 100mg IV Solumedrol". Your doc also needs to order enough HC for stress dosing should you get ill or experience other physical/emotional stressor.
Is your husband catching on? Is he becoming more receptive to your condition? Can he see how it has impacted so many aspects of your health/life?
You received good advice for dividing your HC throughout the day.
That's OK. Asking the same things repeatedly in different ways can be due to the low cortisol. This is stressful for you and we have difficulty processing a lot of things at one time. Our brains tend to become overloaded when cortisol is not optimal.
Laurie
|
|