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Thyroid Disorders Community

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, pituitary gland, cancers, thyroiditis, and thyroid Stimulating Hormone (TSH).
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Don't know where to go from here

by ruralakay, Nov 01, 2007 11:46AM
I'm not sure where to begin. I have such a list of symptoms, whether connected or not. W/both pregnancies (1990 & 1998), I had ITP, & my platelet count still continues to run borderline low (right now, 145). In 2000, I was diagnosed w/hypothyroid, after seeking help @ a weight loss clinic (they reported a VERY high TSH). My PCP (also an internal med. spec.) concurred, & I began taking Armour thyroid. My TSH has fluctuated, over the years, wildly, from high to low. In 2001, I also began having a burning pain in my back, around the kidney area, for no reason, for which my PCP referred me to a gastroenterologist for follow up. I had a recurrance in 2004, after a surgery that turned into multiple surgeries (complications). Two gallbladder sonos & an upper GI were inconclusive, except for "MAYBE some stomach irritation." I was placed on Nexium for 3 months, for both flareups. I couldn't tell a difference.

Last summer, I had a bout of urticaria with throat constriction (my eyes would swell & I'd break out in hives), without any obvious allergy triggers, & the cause was never diagnosed. PCP told me to carry an EpiPen. Tests for Lupus were negative.

I went to my doc, a week ago, w/complaints of STILL having trouble losing weight (despite 1200-1500 cal., restricted carb diet & despite riding a bike 10-15 miles per day) with all my weight in my abdominal area, hair falling out on part line, facial hair growth, heavy periods that move around a bit each month, low blood pressure, sensitivity to cold/intermittent with very brief hot flashes, minor depression, brain "fog"/forgetfulness (w/no major stresses in life, right now, to explain them), and bruising easily. He ran a CBC w/differential, complete metabolic profile, Free T3 & T4, serum cortisol, and fasting insulin.

To my (and, I think, his) surprise, the results came back OPPOSITE of what my symptoms seem to suggest. The only level that was out of range was my TSH, and it was very low (0.034). My free T3 was 4.1 and my free T4 was 0.98. Glucose (91) & insulin (10.7) were fine. Platelets were low normal (145). Cortisol was 13.9.

I can't get over the nagging feeling that it might be my adrenals and/or pituitary gland. However, my PCP's way of dealing with fluctuating thyroid values, over the years, has merely been to raise or lower my medication, without further investigation. I have, currently, been taking 180mg, over the past year, with no alleviation of symptoms, but with my low TSH, he'll probably want to drop the dosage. He also stuck me back on Nexium, for two weeks, for another flareup of the back "burning" & difficulty swallowing food, & said he'd refer me back to GE doc, if it hasn't gotten better (it hasn't, so far). I think I need a referral to an endocrinologist. We've not gotten anywhere with the "dosage adjustment"/Nexium apporoach to fixing the biggest problems, over the years. What do you think?
Member Comments

by twintwo, Mar 02, 2008 12:16AM
To: uralakay
Have you had your Thyroid Antibody level checked?  I've had multiple nodules for many years that kept getting larger and was never put on Thyroid hormone - also never had the antibodies checked.  I got a new PCP who ordered blood tests to check all my levels.  My TSH was 2.76 and my T4 = 1.28, T3 = 3.4 however my Thyroid Antibodies were at 2332.0 - yes - two thousand, three hundred thirty two  - should be between 0.0 - 35.0.  I believe this outrageously high number means my immune system is trying to kill off my thyroid.  I'm asking to see an endocrinologist when I return for blood tests next week after being on on 5 mcg of Cytomil and 25 mcg of Synthroid.  
Check out http://www.revolutionhealth.com/drugs-treatments/nexium-side-effects - I would touch the stuff with a nine foot pole.  I suggest you also go see the best naturepathic doctor in your area who has an understanding of how nutrition and supplements can help you address your issues much better that a pill you get from pharmacuetical drug company.

by KelDC, Mar 02, 2008 12:13PM
To: ruralakay
The facial hair growth and upper body weight gain are two symptoms of Cushing's disease, an adrenal gland disease. A friend of mine had the same thing.  I'm not saying you have it, of course, but those are two marks of it.  
Are you seeing an endocrinologist? If not, I'd start there and see about your adrenal glands as well as your thyroid.  
It sounds like you are staying well-informed, which is a huge part of the battle.  If you don't like what your doctor is telling you and still feel something is amiss, don't be shy about asking for a second opinion.  And/or a referral to an endocrinologist, particularly one who specializes in the adrenals or the thryoid.
Best of luck to you.  

by purpledeb, Mar 03, 2008 01:27AM
To: ruralakay
You sound like you could be my twin.  I have been suffering with hypothyroidism for almost 16 years and I finally found a doctor that found out I have Hashimoto's disease.  If you are taking any form of iron it might be a reaction to iron is you have Hashimoto's disease.  I was to so many doctors and not one did that simple blood test.  It is two test they perform to see if you have it.  I am just in the beginning stages and researching.  They thought I had cancer in my stomach and my colon but my symptoms were caused by the doctors not doing there job.  I was overlooked.  Let us all know how things are going once you get this test.  I have just stumpled upon this website and are looking forward to others to teach me how to get better.  Purpledeb

by piglet08, May 01, 2008 02:32PM
To: Ruralakay
Your right to get checked by an endocrinologist sounds like Addisons desease or a parathyroid type. Hard to diagnose so normal GP wont necessarily pick it up. [GP} general practicioner.

by kitty9309, May 02, 2008 07:44AM
I agree. The cortisol of 13.9 requires dynamic adrenal testin. That is an ACTH Stimulation Test.

This is assuming that the Cortisol was drawn at 8 am.

by ruralakay, May 14, 2008 08:30AM
To: everyone
Thanks for the responses. I'm a little slow, getting back around to checking for answers. Twintwo, no, I don't recall having my thyroid antibodies tested. I guess since they'd already pegged it as Hashimoto's, and since I'd already had other autoimmune issues (the ITP), they didn't feel it was necessary. Yeah, I'm not all that thrilled about the Nexium/Omeprazole treatment and only take it when I have to (when reflux starts in again). I went back to my gastro doc, in Nov., and he ran a scope & diagnosed me with a hiatal hernia, so, at least I know the cause, now.

KelKC, piglet, & kitty, I got the referral to the endocrinologist, but I must say, it's been a nightmare. The first doc my GP wanted to refer me to came highly recommended, but he no longer takes my insurance. So, my GP sent me to a second that he wasn't that thrilled with, but took my insurance. I now know why he wasn't thrilled with her. Even my sister, who is head nurse on one of the floors of one of our local hospitals, said, "Oooh, I DON'T like her!!"

This woman is an anomaly. I'm finding it hard to believe this woman is board certified. For starters, I'm not meaning this in a cruel way, because heaven knows I have no room to talk, but you want to say to her, "physician, heal thyself." She's giving dietary and exercise advice to her patients, and she, herself, is extremely morbidly obese. You'd think, if it was from a medical condition (such as PCOS or Cushings) that she'd have the knowledge and resources to seek treatment. If it is just a diet/exercise issue, then she's not setting a very good example.

But that's not my real issue with her. My issue is that she is lazy and totally disregards all my concerns. At least, my GP was willing to do whatever testing was necessary, to rule things out, even if they were long shots. I mentioned PCOS and Cushings and she just shook her head in that "I'm a doctor, so I know everything, and you are a lowly patient, so you know nothing" way, and said that the things like the skin