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Post by martizavala on Mar 17, 2009 20:29:16 GMT -5
Hello, This is my first post on this forum. I have been learning about adrenals/thyroid since December. Have read Dr. Wilson's Adrenal Fatigue book, Dr. Starr's Hypothyroidism book, Dr. Jefferies Safe uses of Cortisol book. Currently reading STTM book.
This post is regarding my 19 yo son, Matthew. He has had allergies, asthma and is exhibiting pre-CFIDS symptoms (I have CFIDS/Fibro, adrenal insufficiency, hypothyroid, etc).
December 2008 - these test run by functional medicine doc.
Cortisol 8am - 5 (13-24 nM) Noon - 3 (5-10 nM) 4pm - 2 (3-8 nM) MidN. - 2 (1-4 nM)
DHEA 6 (3-10 ng/ml) Free Testst. 61 Male 1-19 (70-135 pg/ml)
TSH 2.041 .45-4.5 (.1-2.5 uIU/ml)
Most recent tests, run February 2009. Run by mainstream endo. This looks like secondary adrenal insufficiency, plus low iron and low Vit D. He had started 10mg HC for 3 days then was off for 14 days before these tests were run.
Baseline Cortisol 8:30am 10.9 (3.1-22.4 ug/dL) Baseline Plasma ACTH 18 (6-48 pg/mL)
30min Cortisol - 22.2 (3.1-22.4 ug/dL) 60min Cortisol - 24.3 High (3.1-22.4 ug/dL)
TSH 1.879 (0.450-4.50 uIU/mL) Triiodothyronine, free 3.8 (2.3-4.2 pg/mL) Free T4 1.39 (0.61-1.76 ng/dL) No Reverse T3, Aldosteron, Renin was run
Free Testosterone 22.52 HIGH (5.0-21.00 ng/dL) (he was on compounded testosterone/DHEA/crypsin cream -10/10/1% for 30 days then off for 3 weeks when this test was run) Serum Testosterone 636 (241-827 ng/dL) % Free Testosterone 3.54 (1.5-4.2 %) LH 4.8 (0.5-5.3 mIU/mL) FSH 2.4 (1.4-18.1 mIU/mL) PTH, intact 30 (15-65 pg/mL) z Prolactin 6.6 (2.1-17.7 ng/mL) TPO Ab <10 (0-34 IU/mL)
Ferritin 56 (22-322 ng/mL) Sodium 140 (135-145 mmol/L) Potassium 4.2 (3.5-5.2 mmol/L) Chloride 103 (97-108 mmol/L) Phosphorus 3.9 (2.5-5.6 mg/dL) Magnesium 2.0 (1.6-2.6 mg/dL) Vitamin D 25 OH 38.6 (32-100 ng/mL)
Hgb A1c with MPG estimation 5.1 (<7.0%)
He is getting ready to go to college in the Fall and I am trying to get him boosted. We are gluten free but not casein free, distilled water with added minerals, unrefined sea salt, no processed foods. He is currently on 20mg HC, some adrenal glandular, 750mg licorice (regular BP and HR).
I would like to run all baseline tests that we can run before he leaves. He did have a head injury as a young child.
Should I ask for testing that would show if he was secondary vs tertiary?
Should I ask for MRI, pituitary antibodies?
Should I ask for CRH or TRH or any other pituitary hormone levels?
Should I ask for heavy metals testing or chemical toxicity testing (can this disrupt the pituitary)?
Is it possible that we can get his pituitary back online? (since he is putting out a little ACTH - 18)?
Many thanks for any advice, Marti ex-St. Louis Resident ;D
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Post by justaustin on Mar 21, 2009 9:30:28 GMT -5
Marti, You are a great parent to notice and advocate for you son. Are you doing anything to address less than optimal ferritin and vitamin D levels? I am hypopit with secondary ai. My thyroid dysfunction is combo of primary(autoimmune) and central. I had a traumatic head injury at age 5. I had decades of tell tell symptoms. Lately it's like peeling onion layers to discover other issues. Our 8 year old has secondary adrenal insufficiency. His ACTH and morning cortisol was much like your son's. This is a signaling issue. For life. I'll be damned if he will endure 30 years of undiagnosis,mistreatment/undertreatment for this(as I did). Head injury is enough to result in hypopit. The pituitary stalk is a delicate vascular connection between hypothalmus and pituitary. A head injury can be enough to even damage this connection. FYI, if you want your son to maintain fertility, you might want to do research on sex hormone replacment. Testosterone alone will shrink his testicles and shut down sperm production. I'd suggest you go to www.realthyroidhelp.com. There is a men's forum moderated by "Barbie". Replacing cortisol and thyroid may result in improved sex hormones. Free Thyroid hormone levels will likely drop after cortisol replacment. I'd suggest having them retested in about 4-6weeks after cortisol replacement. The treatment will be the same regardless if failure is secondary or tertiary. He needs hormone replacement(cortisol,thyroid). Dynamic MRI of pituitary with and without gadolinium is a must. There are no commercially available pituitary antibody testing available, yet. Heavy metals,virus,illnesses can make matters worse. You can do testing and deal with issues of say mercury toxicity...but do not avoid treating hormonal deficiencies. I didn't see IGF-1 with growth hormone testing. PTH needs to be done with calcium/ionized calcium. Our son has hypoparathyroidism along with hypothyroidism. This is likely part of autoimmune polyendocrinopathy..for him anyway. FWIW, our son takes 15mg/day of HC. He does not have hypercortisol symptoms. Are you sure 10mg/day is enough for your son? There is a big difference between dosing HC for "adrenal fatigue" and dosing for Adrenal Insufficiency(whether it be primary or secondary ai). Laurie
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Post by martizavala on Mar 24, 2009 19:48:11 GMT -5
Hi Laurie Thank you for responding! My comments/answers in ***. >Are you doing anything to address less than optimal ferritin and vitamin D levels? *** He is on 3000 IU of Vit D3. Haven't started the iron to increase ferritin because I try to add one thing at a time so we know what is doing what. He should be ready to start iron next week or so. >Our 8 year old has secondary adrenal insufficiency. His ACTH and morning cortisol was much like your son's. This is a signaling issue. For life. I'll be damned if he will endure 30 years of undiagnosis,mistreatment/undertreatment for this(as I did). ***I am sorry to hear of your little one having issues. Do you know what caused his issue? I don't want Matthew to struggle either. > I'd suggest you go to www.realthyroidhelp.com. There is a men's forum moderated by "Barbie". ***Thank you. I will do that. I have been reading that site but not posting. >Dynamic MRI of pituitary with and without gadolinium is a must. There are no commercially available pituitary antibody testing available, yet. Heavy metals,virus,illnesses can make matters worse. You can do testing and deal with issues of say mercury toxicity...but do not avoid treating hormonal deficiencies. I didn't see IGF-1 with growth hormone testing. PTH needs to be done with calcium/ionized calcium. Our son has hypoparathyroidism along with hypothyroidism. This is likely part of autoimmune polyendocrinopathy..for him anyway. ***Thank you. This is exactly what I was looking for. I think he has had a good set of baseline testing but now I feel we need additional testing to know the cause or the extent before starting on lifelong supplementation. >FWIW, our son takes 15mg/day of HC. He does not have hypercortisol symptoms. Are you sure 10mg/day is enough for your son? There is a big difference between dosing HC for "adrenal fatigue" and dosing for Adrenal Insufficiency(whether it be primary or secondary ai). ***His doctor put him on 10mg but I have him currently on 20mg. I don't think that is enough but want to get additional testing before getting him stable on a dose. He has an appt with an endo whose nurse SAYS that they treat secondary adrenal insufficiency. ***Last question: do these tests that you have outlined above need to be done when off HC (like cortisol testing, etc). I am thinking of titrating him down from 20mg to be ready for this doc on the 7th (but am torn because if she is not a good doc, he will have to get back on until we found a doc that would help....) Many thanks for answering, Marti
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Post by martizavala on Mar 24, 2009 19:52:15 GMT -5
Forgot to add...
We just found out that he has sleep apnea. He is getting fitted for a CPAP machine.
This may be the source of fatigue that has led us to find out all of these other issues, which is a blessing, otherwise we would have never known he had secondary adrenal insufficiency.
So, I don't think I will be able to stabilize him on cortisol or thyroid until his fatigue from the sleep apnea is resolved.
He does not snore or fall asleep during the day so this just didn't make it onto my radar.
Marti
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Post by justaustin on Mar 28, 2009 10:28:11 GMT -5
Will the docs be evaluating a central cause for his sleep apnea?
You need to press this. 19years old is pretty darn young. Esp without snoring and not being overweight. And with the Secondary Adrenal Insufficiency. This should be a red flag!!!
Need dynamic MRI with and without gadolinium.
You should be able to optimize cortisol and thyroid while treating the sleep apnea.
Laurie
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Post by martizavala on Mar 31, 2009 1:08:57 GMT -5
Hi Laurie,
Can you tell me why this is a red flag? Is it a red flag for adrenals/pituitary?
This is what I understand from the sleep doctor. The cause of his sleep apnea is structural. He has a narrow airway (clues are narrow jaw and very high palate arch. Then he has some secondary tissue near his tonsils. Then he has a misaligned jaw which may be playing a part (they are not certain of this). Then his jaw is set back so that makes his tongue set back which makes the obstruction more of a problem.
The first and easiest option is the CPAP. Then we have to make an appt for the orthodontist to see what he says about the misaligned jaw (he just got out of braces!). The soft tissue surgery has a 35% success rate so we probably won't do anything about the extra tissue. The last option is a special retainer that mechanically brings his jaw forward at night when he sleeps. Oh the very last option is surgery of the jaw but I think we will wait on that.
He has always grinded his teeth and that is a clue to obstructive sleep apnea which I didn't know. It is the body's way of pulling the jaw forward during sleep. He has probably dealt with this since he has hit puberty. I hope to get the additional testing on April the 7th with a new endo.
Many thanks for your help! But please let me know if I am missing a red flag here, somewhere. I have never dealt with sleep apnea. Marti
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Post by justaustin on Mar 31, 2009 6:29:19 GMT -5
I have a close friend who has sleep apnea. Not overweight and no hypothyroidism..... I sent him to my ENT. She immediately recognized it as a structural issue. She sent him to oral surgeon who had oral appliance custom made for him to wear while sleeping. No CPAP machine.
Forgive my overalarm. My concern was that in the absence of structural abnormality...I didn't want the docs to overlook your son's secondary adrenal insufficiency and other possible hormonal deficiencies. Whether these deficiencies themselves impacting this condition or as central cause.
Either way, at some point,I still think he will need to have Dynamic pit MRI with and without gadolinium.
Laurie
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Post by martizavala on Mar 31, 2009 19:32:00 GMT -5
Thanks Laurie, I am hoping to have the tests that you suggested several posts ago, very soon. April 7th is a test with an endo that supposedly knows what to do with secondary AI.
Thanks for responding, you have been a great help! Marti
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