celiac disease And Endocrine - Hypopituitarism, Adrenal Problems

[Remi]

Hi,

I've been gluten-free for 4 years, since diagnosis thru bloodwork and biopsy. The past 6 months I have not been feeling well - experiencing many hypothyroid symptoms (fatigue, weight gain, cold, fluid retention, low blood pressure, low body temp, low sex drive, etc...). I recently was in to see my dr. for menstrual problems and she ordered a battery of tests. My white blood cell count and prolactin were both low (though not extreme) and my TSH was low-normal, which would rule out hypothyroidism. I'm wondering if anyone can shed some light on this... I've been reading a little bit about hypopituitarism and adrenal problems and wondering if someone has any experience to share.

I do not want to read too much and imagine I might have something that I do not, however, I know something is not right. It appears to me that I need more bloodwork done, but I'm betting the dr. will say everything is fine because my tests are not too far out of the norm.

Thanks for any advice or experience!

Rachel

dd age 7 - celiac disease diagnosed at age 3

dd age 5 - pos. bloodwork/neg. biopsy but gluten-free since age 1 1/2 - vitiligo since birth

ds age 2 1/2 - gluten-free since birth

[Ksmith]

I strongly recommend the site www.stopthethyroidmadness.com

Take a look around. Also there is a forum on there, one specifically for adrenals. The moderators will answer all your question in a timely manner.

[georgie]

I would second what ksmith says but I noticed you said this

and my TSH was low-normal, which would rule out hypothyroidism.

You CANNOT dx HypoThyroid by just looking at the TSH. Were your Free T4 and Free T3 tested ? Thyroid Antibodies ??

I had a normal low TSH too ( 1.1), and 3 Drs last year were puzzled. I eventually found a Dr that had HypoThyroid herself, and she immediately tested me properly, and found I had Thyroid Antibodies. ie an autoimmune Thyroid problem. Once you have Hashimotos - the TSH is even more useless.

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I have a little experience with HypoPituitary as my hubbie is being tested for that right now. For him - MOST of his hormones are coming back low, ie Thyroid, cortisol, testosterone, DHEA, LH, FSH, IGF, Aldosterone. Also he has no heat tolerance at all - can go up or down 4F in minutes, and 2 Drs have now dx him with a damaged Hypothalamus. He has just had an MRI to rule out a Pituitary Tumour ( OK ), and the next test to dx him will be an Insulin Tolerance Test where Insulin, GH, and Cortsiol are all measured over 2 hours in a hospital situation. He has been on Thyroid / adrenal meds for 12 months and was not responding which is where our Dr started to test further and started to think HypoPit.

Hope this isn't you, as its a long road to be dx and then be treated and the results are not always positive.

[Remi]

Thanks for the info. I have posted on stopthethyroidmadness forum to see if I am even looking in the right direction. My gp has not tested T3 and T4 (is that right?) since I don't think she was initially looking for a thyroid problem, but had ordered the workup since she thought I had fibroids. If she can acknowledge that something is "off" I'm sure this bloodwork is only the tip of the iceberg. It's such a bummer since I'm training for a triathlon and am having so much fatigue and difficulty recovering. I just wish they could figure it out and treat problems quickly so you could get on with life. Of course, look how long it took most of us to get diagnosed with celiac disease - auugghh!

Thanks again!