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Old 08-18-2004, 12:41 PM   #1
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What is wrong with me???

No diagnosis yet. I saw the endocrinologist about a month ago and he ordered a repeat set of bloodwork, an ultrasound, and a thyroid scan. Today I went in for my ultrasound and requested a copy of my blood tests from Monday. My numbers are all over the place! I originally got tested because I was feeling hypo, which my numbers supported. Also, my thyroid was enlarged and still is. My numbers from this week look really good, though. Why the change? Here are my numbers (yes, I did ask for the free numbers, yes, the doc said he would order them, no, they didn't get done....)

1999: TSH 0.75
2003: TSH 1.93

6/15:
TSH 3.14 (0.40-5.20)
T4, serum 7.8 (4.5-12.5)
T4 free 1.2 (0.8-1.9)
T7 index 2.1 (1.2-4.3)
T3 uptake 27.1 (23.4-42.7)
Microsomal TPO-Ab negative
Thyroglobulin antibodies negative

8/16:
TSH 0.83 (0.40-5.20)
T4, serum 9.7 (4.5-12.5)
Antibody tests pending

So my TSH is down to a real normal (I know, forget about the TSH...) and my T4 is up. Did I just turn normal? Why do I keep changing? I see the doctor on Friday morning, but I want to have some idea of whether there is really something wrong with me or I am just crazy. I have been feeling better for the last few weeks, but not great, which I suppose is a reflection of the change in numbers. What could cause things to fluctuate so much?

And a side note... I had to do the low iodine diet for the past week for the scan. I am a vegetarian, so basically between that and the diet the only protein I've been eating is peanut butter. My blood tests say that my BUN is low. Basically, since urea nitrogen is a waste product from breaking down proteins, that is why it is low. So I looked at a website that listed possible causes of low BUN and the one that fits me is "malnutrition". Gotta love it. I went in for my thyroid and I end up being malnourished. Plus, they told me that I have to stay on the diet until after I see him on Friday, in case he wants to do any other tests or whatever. ARGH!

So anyway, any help with what might be going on with me would be appreciated. That way I will know whether or not I need to get a second opinion on what this guy says. He seems to be very well-qualified, but we'll have to wait and see, I guess.

 
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Old 08-19-2004, 05:20 PM   #2
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Re: What is wrong with me???

I just saw the endocrinologist. Now I really don't know what to do. He told me that there is absolutely nothing wrong with me. I asked him about the TSH of 3.14 that I had the first time I went in, and he said that that was normal. I told him that the new guidelines say 2.5, and he said that I just didn't understand and that they meant that you aren't hypo until you are 2.5 above the lab's normal values (so that would be like 8.0 or something). I asked him about all the symptoms, and he said that it must be something else. I asked him about the enlarged thyroid, and he said that 7% of all women have an enlarged thyroid. I asked him why it couldn't be hashimoto's and he said that it's because I don't show the antibodies. I asked about the 5% that don't show antibodies, and he said something about how he can't just go around trying to cater to that 5%. I asked why he ran all of the tests if he didn't think that there was anything wrong with me in the first place, and he told me that I was being abusive to him and that I was out of line. Of course, the whole time I was crying and tried to explain to him that I didn't understand. I asked why he didn't test my free numbers, and he said that it was irrelevant because there's nothing wrong with me.

I don't know how this happened. I went through all of the questions with the secretaries before I made the appointment. They said that he does test the free numbers, goes by the new guidelines of 2.5, looks at symptoms and not just numbers, etc. And I go in there needing answers and he completely dismisses me. He said something about how it was my choice to go see him, so it's not like he thought there was anything wrong to begin with. I feel like he just ran the tests to generate revenue. I am so frustrated and angry and completely at a loss.

I have made an appointment at the Mayo clinic with another endocrinologist who comes highly recommended from several people. They couldn't get me in until September 9th, though. I know it's not that far away, but I really just want to know now. My thyroid keeps getting bigger. Now it is not just choking me, but people can see it bulging. I just feel so stupid for trusting this guy and then he turns out to not know what he's doing.

Okay, I have to stop ranting now and try to calm down so I can drive home. Please help me, if you have any suggestions about what might be wrong with me or what to do.

 
Old 08-19-2004, 06:27 PM   #3
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Re: What is wrong with me???

Oh my dear.... {{{{HUGS}}}} !!!
I feel your frustration and thoroughly sympathize. I'm so sorry you had such an awful consultation.

I wish I had good answers for you. There has to be a valid reason why your thyroid is enlarging and you have symptoms from it. Have you read Thyroid Power by Dr. Richard Shames? He has a lot to say about what to do when your labs come back "normal"... but I just can't remember exactly what he said, because it didn't apply to me, having already been diagnosed. I think Dr. Stephen Langer may have something helpful to say, too, in Solved: The Riddle of Illness.

Your labs don't scream at me, but they don't look right, either. Actually, between 10-20% of Hashi's patients don't have ABs... not 5%. That still isn't many, but it's enough to think it could include you. And that dolt is absolutely wrong about the 2.5 rule of TSH. He's an idiot. Fret no more about him. He isn't worth the trouble.

How many doctors have you been to trying to nail this down? Can you find an osteopath or other type of holistic practitioner? Endos are often not the best for this. Ironic, isn't it?

 
Old 08-19-2004, 06:54 PM   #4
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Re: What is wrong with me???

This was the first doctor that I saw, really. I got my psychiatrist to order the bloodwork. But I've been asking them for years to check my thyroid because it enlarges and then shrinks again, and I have had large weight fluctuations with no real explanation. I am convinced that it is my thyroid, because it is enlarged and also because when my TSH was 3.14 I gained weight, I felt like a slug crawling through molasses, my hair was falling out, etc. Right now, I am feeling pretty good. My hair has stopped falling out, I have lost weight, I no longer need to sleep for 14 hours and then take a nap.. So not only did I have all the symptoms and a TSH above 2.5, but the symptoms have disappeared now that the TSH has fallen. But even if it isn't my thyroid, the endocrinologist that I have a appointment with now has been recommended by a friend who said that whenever he finds something that he thinks is off, he will pursue it until he finds an answer. So even if it turns out to be something else, he seems like the kind of doctor who will actually tell me what to do next. The guy I saw today actually pointed to the chart of the endocrine system he had on the wall and explained to me that that is all he does, so he couldn't tell me anything because since my thyroid is "normal" it is out of his jurisdiction. If for some reason this guy doesn't work out either, I will try to find an osteopathic internist, I think.

 
Old 08-25-2004, 02:54 PM   #5
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Re: What is wrong with me???

Okay, so after many issues getting my records (I informed them that they were violating the medical board guidelines, and they threatened to call the police on me if I came into the office, then told me that if I wanted my new doctor to be able to talk on the phone with the old doctor I would have to come into the office and sign a form...), I got them today. Well, the reports from the tests, not the actual test results, but at least I got something.

Anyway, if you recall from above, the doctor was adamant that there was absolutely nothing wrong with my thyroid and that my symptoms must be from something else, but definitely not my thyroid. So I get the reports on the scan and ultrasound that he ordered (he actually wrote these reports, too...). The report from the scan says "the uptakes and scan pattern are consistent with possible multinodular goiter and/or thyroiditis" and the report from the ultrasound says "the ultrasound was compatible with multinodular goiter." So there's obviously nothing wrong with my thyroid, right? Gotta love stupid doctors...

Interestingly, they also included a typed statement that confirms that they did indeed threaten to call the police if I went to their office. It might come in handy with my complaint against them....

I see a real doctor (I'm convinced that this other guy just got his license out of a cracker jack box) September 9th.

 
Old 08-25-2004, 06:10 PM   #6
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Re: What is wrong with me???

Unbelievable!

 
Old 08-26-2004, 06:25 AM   #7
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Re: What is wrong with me???

Let us know what happens with the "real" doctor. He sounds promising... good luck!

 
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