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Post by crithium on Apr 7, 2009 20:47:00 GMT -5
Well, I think I have good news! I sent my labwork and a write up of my symptoms and theory on my hypopit to a PA that works at a clinic with a friend of the family (unfortunately it is back home so I will have to travel but at this point I don't care) and I called today to make sure that she got it all and was told that the PA think my cortisol is all messed up!! I have an appointment in one week to see her! I hope that means I will finally get treated!!! I hope this isn't another disappointment, I actually bought a blood suguar monitor and a blood pressure monitor so that I could track both and (hopefully) prove to my doctor here that I need to have something done. I think I will wait though, or would it be helpful for the PA to see what is hapening before/if she treats me? I just don't know? So Laurie, I know that you were looking for a doc reccomendation for me but I can see how this one goes if you haven't found anything yet. If it turns out badly then you can resume your search. Thanks for all your help!
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Post by crithium on Apr 8, 2009 16:21:04 GMT -5
Not sure if I should start a new thread in adrenals or not but I spoke with the nurse that is our family friend because the PA that she works with looked at my stuff on her day off yesterday (how nice) and wants me to start supping celtic sea salt (which I was trying off and on with symptoms but suggested twice a day 1/2 tsp), up my vitamin C till I have bowel issues (which I think I al ready do but I am not sure if it is from the digestive enzymes, the vitamin c I am already on or left over from the anitbiotics ) and then she wants me to get licorice root supp. She aslo wants me to graph my temps and my blood pressure. She is pretty sure she will start me on HC but wants to see me first. Sounds like she is definately headed the adrenal route correct? She mentioned the Wilson's Syndrome to do research on before I meet with her. I looked at it, and it looks like it is basically hypothyroid but they treat it with T3, I am thinking it doesn't apply to me cause my T3 was actually in the omptimal (high normal) range. Am I missing something? Also, I want to make sure that the hypopituitary is not overlooked as adrenal only problems. Any ideas to help me with that? Or does it not matter becuase the treatment with HC is the same for secondary adrenal as just low functioning adrenals?
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Post by justaustin on Apr 8, 2009 17:38:03 GMT -5
Congratulations!! You are right about everything. We can keep this going.
The reason your FT3 might be higher in range than FT4 is low cortisol. Once you start HC, your FT3 will drop. T3 protocol is useful for treating high Reverse T3(after causes are addressed/corrected). This is what Lethal Lee has been doing(successfully) when other treatment modalities failed.
Be sure that you have had ACTh with morning cortisol, saliva cortisol testing,DHEA-S and ACTH Stim (if docs want) prior to any licorice,hc,extracts are started.
In evaluating pit function you'll need LH/FSH with individual sex hormones on day 21 and likely day 3 too. prolactin morning ACTH with morning cortisol IGF-1 with growth hormone level and IGF binding protein 3. DHEA-S(usually bottom 1/3 of range or less with hypopit due to low ACTH). ADH/vasopressin. Avoid fluids for 12hours prior if you can. TSH with free T4 and Free T3 prior to thyroid hormone therapy.
Laurie
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Post by crithium on Apr 13, 2009 12:11:58 GMT -5
So I had morning ACTH with morning cortisol, DHEA and an ACTH Stim test done already. I can't find licorice root anywhere - where should I look or order it from? I don't think I will need those tests repeated will I?
I had alot of the others tested:
ACTH Stim: Base cortisol 7.5 30 min 19 60 min 23
Previous cortisol level was 11
Recent blood draw:
AM Cortisol - 11 (7-25 ug/dl) Corticotropin (P) - 13 (10-60 a.m. drpg/mL) Insulin-Like Growth Factor - 254 (117-321 ng/mL) LH - 9.6 (Follicular 2.1-10.9 Midcycle 20.0-100 Luteal 1.2-12.9 IU/L) FSH - 7.2 (3.9-8.8 Follicular 4.5-22.5 Midcycle 1.8-5.1 Luteal IU/L) (previous level was 10.2) Estradiol,S - 105 (15-350 pg/mL) (previous level was 35) Prolactin - 5 (range was 3-?? can't remember)
Androgens:
Testosterone, Total, S (reference range: 8-60ng/dL) my level was 25 Testosterone, Bioavailabl (reference range: .8-10ng/dL) my level was 2.8
Androstenedione, S (reference range: 30-200 ng/dl) my level was 135 Dehydroepiandrosterone (reference: D<13 ng/dL) my level was 3.1 DHEA Sulfate (S) (reference range 31-228 ug/dL) my level was 127
I just am worried that the hypopit will get looked at as adrenal insufficiency and not pituitary. Of course I don't know if she will look at sex hormones again since mine were taken on day 15, theoretically midcycle so that were all off.
I have had TSH, and Free T3 taken but not free T4: TSH has fluctuated from 2.1 to 1.4 to 2.3 (range is .8 ? to 5 something) Free T3 was 3.3 (top of range was 3.5, don't remember bottom)
Sorry, don't have my labwork at the moment so I am doing some of it from memory.
Let me know what you think aobut the other pit hormones and androgen levels I had done.
Thanks again!
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Post by justaustin on Apr 13, 2009 13:59:31 GMT -5
As discussed here and at RTH(by myself, Lee and others)...Your cortisol sucks!! Your ACTH(corticotropin hormone) sucks too. Cortisol of 10 to 20 doesn't rule out underlying insufficiency. Your ACTH being rock bottom pretty much clinches secondary AI. Your ACTH stim tripling from a low base also supports this. Read Chris' ACTH article on Wikipedia. It goes into more explanation.
Licorice aint goin' to cut the mustard. Licorice doesn't increase cortisol. It keeps cortisol around a bit longer. So it if sucks to begin with, it aint goin' to help.
Your prolactin is around where mine is. Mine is between 5-8. It would have been interesting to check a level after our son was born. I didn't produce any milk.
If the doc doesn't start HC right away, I'd give up on them pronto.
Laurie
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Post by crithium on Apr 13, 2009 20:31:29 GMT -5
I think she is planning on starting HC right away, my concern was that she would focus on adrenal glands not my pituitary. Is the treatment the same? Should I see if she will retest my sex hormones? Is it possible that my pituitary is just lacking ACTH production or do you think since my prolactin is low that it is more than that?
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Post by justaustin on Apr 14, 2009 6:38:42 GMT -5
Unless you are pregnant and planning to breast feed, it's moot point to get up in arms about low prolactin. IF you got pregnant again, you would need to keep tabs on it if you wished to nurse the baby.
The treatment for adrenal insufficiency,whether primary or secondary in nature, is the same. You need cortisol replacement. Without proper signaling from pituitary, the adrenal glands will not produce optimal amounts of cortisol. PERIOD!!
You need to redirect her to your hypopit as likely cause. Review head trauma and post partum period as likely insults. You can be hypopit with just one hormone deficiency, a few deficiencies or all pit hormone deficiencies(pan hypopit).
Your sex hormone levels might improve once thyroid and cortisol is optimized.
Laurie
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Post by crithium on Apr 14, 2009 11:53:33 GMT -5
I will really push the hypopit issue. I am glad to know that they are the same treatment. I am planning on having another baby and would be devistated if I couldn't breast feed. I suppose I will worry about that when the time comes. Thanks for the help. I am a little hesitant just because I keep getting told that I am fine and my real problem is an anxiety disorder blah blah blah. I keep trying to get my point accross and ask why it isn't possible especially since even my lab work leans that direction, a few points lower on a lot of things and it would be a slam dunk! So frustrating! Hopefully a new clinic and a new doctor will make all the difference. At least she is talking cortisol replacement and adrenal issues instead of talk therapy and antidepressants. I will keep you posted on what she says. Is there anything with my androgens or other pit hormones I should bring up? Also, low blood pressure question, I started taking it and I sit down at night in bed and put the cuff on, wait 5 minutes or so then take a couple of readings. The first two are always around 95/62 then the third one gets to be like 85/56 still sitting. Am I doing something wrong? If I check it again it goes back up to like 105/68, probably because I get hyper about it being low?
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