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Autoimmune but which autoimmune disease/syndrome? Difficult case...

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Old 09-15-2011, 07:27 AM   #1
Join Date: Sep 2011
Location: Washington, D.C.
Posts: 6
SeptemberTwin HB User
Autoimmune but which autoimmune disease/syndrome? Difficult case...

I am another one of those people asking for help with a diagnosis. I have seen two endocrinologists already and they have differing opinions. I am seeing another endo in November and going to NIH in November. I just want to know if anyone else has experienced similar symptoms or if anyone has any suggestions. Thank you in advance!

I began having hot flashes, sudden severe sweating, and low blood pressure in October of 2010. I didn't think anything of it until April of 2011. I stopped getting my period in March 2011. I went to the gyno (since I was due for a pap smear anyways) in May and she ordered a blood test to check my hormone levels.

Blood test from May 2011:
DHEA 143 (range is 45-320)
Estradiol 24 (in post-menopausal range which is less than 27)
FSH 60.7 (in post-menopausal range which is 23.0-116.3)
HCG*,Serum <2 (normal is <5)
LH 50.5 (in post-menopausal range which is 15.9-54)
Progesterone <0.5 (in post-menopausal range which is <0.5)
Prolactin, serum 6.0 (in post-menopausal range which is 2.0-20.0)
Testosterone, free 2.0 (range is 0.1-6.4; normal)
TSH 11.75 (0.40-4.50)

I was diagnosed with Hypothyroidism back in 2009 but I didn't take Synthroid consistently. I am now on 150 mcg of Synthroid and my last TSH level was 2.75 which is normal. My gyno diagnosed me with premature ovarian failure.

I went to my first endocrinologist appointment in June and she re-ran the above blood tests and checked my thyroid antibodies and checked for ovarian antibodies.

Blood test from June 2011:
FSH 64.4 (in post-menopausal range which is 23.0-116.3)
LH 56.1 (outside post-menopausal range which is 15.9-54.0; within the mid-cycle range which is 8.7-76.3)
Testosterone, total 43.07 (within normal range which is 10-70)
Sex Hormone Binding Globulin 22 (within normal range which is 18-114)
Testosterone, free 9.6 (which is high; normal range is 0.6-6.8)
TSH 8.140 (high; normal range is 0.350-4.500)
Estradiol 18.3 (in many ranges but post-menopausal range 0-37)
Prolactin 9.3 (in many ranges but post-menopausal is 1.8-20.3)
DHEA 100 (normal range is 35-430)
Thyroid Peroxidase (TPO) Ab 5790.3 (extremely high, normal range is 0-60)
Ovarian antibodies were negative

The TPO antibodies terrified me! I looked online and I have never seen anyone else with TPO antibodies that high! My endo didn't think anything of it but I knew this could mean something! My endo decided to do an MRI of my pituitary gland and brain. The MRI came back normal. She also ordered a pelvic ultrasound and that came back normal as well. She simply diagnosed me with premature ovarian failure and didn't believe my hypothyroidism is connected to my ovarian problems.

I got my period in July of 2011 but I have not gotten it since then. I have only had three periods this year! I used to miss periods for a month at a time but I was pretty regular before. When I got my period in July, my gyno had me do blood tests for Estradiol and LSH and they were within the normal ranges.

I decided to see another endo and he saw my TPO antibodies and was shocked! He diagnosed me with Autoimmune Polyglandular Syndrome, Type II aka Schmidt's Syndrome. Therefore he decided to test me for Celiac Disease and Addison's Disease. I tested negative for celiac disease.

Blood test from August 2011:
Cortisol 5.1 (normal range is 2.3-19.4; within normal but on low side)
ACTH 52.3 (normal range is 7.2-63.3; within normal but on high side)

After the above test, the second endo decided to do an ACTH Stim Test to test for Addison's Disease.

ACTH Stim Test:
Baseline Cortisol 4.7 (taken around 11am, fasting; normal range 3.0-23.0)
30 minute Cortisol draw 19.1 (normal range 3.0-23.0)
60 minute Cortisol draw 22.8 (normal range 3.0-23.0; in upper range)

The second endo said my ACTH Stim Test was normal but I disagree. How could my cortisol quadruple and that be normal!???

I am at a total loss for what this could be. It is effecting my thyroid, ovaries, and it looks like my adrenal glands! I disagree with the diagnosis of Schmidt's Syndrome since you have to have Addison's Disease to have Schmidt's.

I am still having hot flashes and sweating. My fatigue has gotten progressively worse. If I sleep 6 hours or 12 hours, I still wake up feeling exhausted. I have been having some left abdominal pain for about a month now. I have also noticed that I either have diarrhea or constipation. I have had urinary incontinence for about a year now as well. I am frustrated but I know that I must continue to see specialists to figure this out.

Thank you all for reading over my tests and symptoms.

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Old 09-15-2011, 10:37 PM   #2
Join Date: Jun 2011
Location: beattyoregonusa
Posts: 9
anza HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

Many older people, especially women lose the ability make vitamin B 12 in their bodies and/or assimilate it from food or tablets. Lack of V-B 12 can cause a mired of problems, including thyroid which then can cause more problems. An injection of V-B 12 once or twice a year may untangle it all.
Autoimmune disorder can be and very often is, a vitamin/mineral deficiency.

Old 09-16-2011, 06:01 AM   #3
Join Date: Sep 2011
Location: Washington, D.C.
Posts: 6
SeptemberTwin HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

Hi anza,

Thank you for responding. I did have a Vitamin D deficiency in March but I was treated for it and I take a multi-vitamin now. My Vitamin D is back to normal now. I don't know about my Vitamin B 12. I was wondering about vitamin deficiencies and their role in autoimmune disorders.

I know that my case, along with everyone elses, is a complex one and that it is going to take many more visits and even possibly many more years to figure this out. I just hope the doctors can unravel it before any other symptoms arise.

Last edited by SeptemberTwin; 09-16-2011 at 01:30 PM.

Old 09-16-2011, 01:17 PM   #4
Join Date: Jun 2011
Location: beattyoregonusa
Posts: 9
anza HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

The human is an incredibly complex organism. I am a simple man of average intelligence and abilities with a strong interest in the subject of health. I have read hundreds of pages on the subject and others related. The old adage ‘we are what we eat', is profoundly true. Recently I read research that showed a mothers ova can carry information that can predispose certain health conditions. Recently had a brief conversation with woman at a checkout stand on health, She said ‘defensively’, that she and her children were diabetic and that it was inherited and went back six generations. I retorted, 'and does Your family all eat the same things’. She got this stunned look on her face, like I had hit her over the head. I had to leave for the she was busy. I would like to talked to her more and have gone back but have not seen her. I am not about confrontation, I am about Knowledge. I have read that there are no incurable conditions, that only genetics are incurable. This leads to man’s missing enzyme, the inability to manufacture ascorbic acid (vitamin C) in our bodies. This most important nutrient for man, animals and plants. Vitamin C and all other nutrients should be part of our basic knowledge taught in our schools. Why? Follow the money.
See the internet for more. When you research, remember you are following the money.

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bamabred (10-17-2011)
Old 09-16-2011, 01:29 PM   #5
Join Date: Sep 2011
Location: Washington, D.C.
Posts: 6
SeptemberTwin HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

Everyone has their own opinions and are entitled to them.

I agree that "we are what we eat" but you lost me on the "follow the money" part.

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bamabred (10-17-2011)
Old 09-16-2011, 03:56 PM   #6
Join Date: Jun 2011
Location: beattyoregonusa
Posts: 9
anza HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

Why do you think your doctor does not suggest vitamin therapy? Could it be there is more money in treatment than cures?
We have an incredibly powerful built in defense system, apply called the immune system. When always properly supplied with the nutrients necessary to accomplish this goal, the bodies immune system does this extremely well. Because our bodiy does not make this primary nutrient, vitamin C as almost all animals do, we must supply it.

Why this is seldom mentioned here I do not know is the insidious attack of processed sugars, processed foods, the chemicals add to foods that tear our body apart

Last edited by Administrator; 12-24-2012 at 02:04 PM.

Old 09-17-2011, 06:57 AM   #7
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Location: Northern Virginia
Posts: 1,692
lfoster21 HB User
Re: Autoimmune but which autoimmune disease/syndrome? Difficult case...

Hello SeptemberTwin-I can not help with the lab results/dx. However, I have Premature Ovarian Failure and Hypothyroidism (Hashimoto's), that was not dx'ed for several years after the onset of it. When I was at the stage of not having my period any more and having the hot flashes, I was told that I was too young for menopause and told that my labs showed that I was not menopausal. (I was 29, when I began to seek help for this.) I kept going back to various Drs. and all said there was nothing wrong or that I was under too much very frustrating.

Finally, when I was 33 years old, I found a Dr. that did another test for menopause and they dx'd me as being Post-menopausal. My TSH was off the charts at 60 something. So, when I was 29 and miserable, I was going through peri-menopause and the Drs. all dismissed that as an idea, just because of my age. Then, they decided to check my thyroid and that's when I was found to have Hashimoto's Thyroidism.

Here is what I have learned or am learning now...after menopause, as you know, w/o the hormones that your body is used to, many other medical issues start to happen. So, since I went through meno. 10-15 yrs. early, I had to add that many years to my age, forevermore, when my body changes or illnesses arise. It was difficult to find a Dr. who kept that in mind. Also, it has been shown that those who have had more than 1 AI, you are likely to have others. So, I have to always do my own research and remind my Drs. to also look into less common disorders, that would fall under AI problems.

Sorry for the length of this post. I do hope something in it helps you and that you and your Drs. find all that is wrong with you.

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