Wednesday, September 1, 2010

Taking charge of my health - in spite of my doctor

Got home from vacation last week - went to see my dad in Illinois and caught up on family news. Also found out more about our family health history, and what I learned didn't make me happy with my doctor.
Now, Dr W knows that my paternal grandfather had thyroid cancer and my mother had hypothyroid problems. She knows my thyroid is enlarged and I have several nodules. What tests has she ordered to check my thyroid function? TSH and that's it - she thinks that's the only one that's necessary, even with the family history she has and the results of the thyroid ultrasound scan. I've been trying to get Dr W to do further testing of my thyroid, but she says it's not needed right now, my TSH levels aren't high enough (at 3.5, I think she said). So I decided, fuck her, I'm going to find an endocrinologist and get this checked out on my own. Well, guess what - can't do that. Have to have a referral from Dr W. So I called and set up the appointment with her for next week to tell her I want a referral to this certain endocrinologist (who is taking new patients and takes TriCare and Medicare, thank Maude, I love my Google-fu). She's going to have order a pre-T3, pre-T4, and another TSH. Then she's going to have to fax the results of those, my demographics, any progress notes, and my thyroid scan to the endo. I have a feeling Dr W is not going to be happy about that, but I don't really give a rat's ass. It's my health she's pissing around with, and I don't want to end up like my grandfather - 85 years old, with thyroid cancer so advanced that it can't all be removed because if they took it all, he wouldn't be able to talk or swallow. He was told afterward that even with chemo, he only had 3 - 5 months to live (he fooled them, he stuck around for another 5 years).
So, I also found out that my maternal grandmother had to have B-12 injections, as did one of her sons and my mother (yeah, that's good news for me, what with having had WLS....NOT). Lovely news, that. Luckily for me, I've been taking sublingual B-12 for the last 6 months or so, hoping it would help with fibromyalgia symptoms, so hopefully that will help.
Then, I was reading on the Yahoo support group for WLS survivors that some of us are ending up with MS after 10 to 15 years or so. Just what I needed to hear, especially since my neurologist had brought that possibility up last year when I had the MRI done for my migraines - she found a couple of lesions that could mean MS and wanted to do another MRI in a year to see if there was any progression. Well, it's been more than a year, I think (I've slept at least a couple of times since then, and my memory just isn't the greatest when it comes to what happened when anymore). Since I have to see her next month after I have the EMG to see why the carpal tunnel surgery didn't solve the problem of the numbness in my right hand, I'll ask her about it then.
I keep telling myself that I don't have it as bad as other survivors of WLS, that I don't have as many of the debilitating complications as they have - but I tell you what, if I had had any idea of how fucked up our family medical history is and what the real complications of WLS are (the ones that they don't tell you about when they're getting you to sign on the dotted line for having the damned surgery), I would have told my nurse practitioner to stick it in her ass. That I'd stay fat and suffer with fucked up knees and fight to get them replaced when necessary instead of having to deal with all the shit I'm having to deal with now.


  1. You need to find out what diagnostic range your new endo will use to diagnose hypothyroidism.

    The old range had about 0.5 to 5.5 considered a "normal" TSH. So if your result last time was 3.5, it would indeed be considered normal by that range.

    However, AACE now recommends a range of 0.3 - 3.0 for "normal" and you would be outside of that range and eligible for treatment. Some docs now are even starting to recognize that any TSH above a 2.0 is less than ideal and may be worth treating if symptomatic.

    The problem is that different docs use different cutoffs, and you can get diagnosed as 'hypothyroid' with one doc and not with another, all with the same reading.

    If you feel you have SYMPTOMS of hypothyroidism, then it might be worth taking time to find an endo who goes by the new guidelines, not the old ones. Considering your family history, I'd think that would be important if you are indeed feeling symptomatic.

    Read up on thyroid issues (and possibly find a name of a thyroid-friendly doctor in your area) at Mary Sholom at or

    Many people of size have elevated TSH, don't quite meet the old criteria for diagnosis, but feel immensely better after a trial of meds for a borderline result. Be sure to get the full T4, T3 etc. numbers, and explore several different types of thyroid meds....some of us feel better on Armour thyroid instead of levothyroxine or on a combo of the two.

    Best of luck with your appt!

  2. Thank you, I'll be doing some reading at those sites before I see the endo, then. This is a battle I've been fighting with various doctors for years, and I'm to the point that I'm really tired of being told that I'm looking for "excuses" when I say that maybe there's a thyroid problem (hey, it's 90 degrees outside, and all of sudden, I'm chilled; I have dry skin, summer and winter; my normally thick hair is thinning; I'm tired all the time; I have depression; the list goes on and on - I didn't know some of these were symptoms of thyroid problems). Time to get it looked into, seriously and not take "no" for an answer.

  3. Vesta, I <3 you so hard. I just thought I should tell you.

  4. Shannon - I think you're pretty damned cool yourself :)

  5. Yes see an endocrinologist, 3.5 does sound a bit elevated and you need to check that out. Nodules on the thyroid can affect weight too. I am diagnosed with serious thyroid and other endocrine problems. Read here:

    I eat seaweed--the Japanese stuff for idodine. I am on so much Synthroid, the pharmacist is in shock.

  6. I don't know what happened between the last time my TSH was tested and this time, but this time, my TSH is at 1.41. I wonder if it's the vitamin D-3 I've been taking for the last 8 or 9 months that's affected it (that and the sublingual B12 I'm also taking). My free T4 is 1.03 and my free T3 is 2.8. Dr W also checked my B12 level because I told her there's a history of B12 deficiency in the family (maternal grandmother and one of my mother's brothers). That level is >1000 (wonder what it would be if I wasn't taking 5000mcg of sublingual B12 every day?). But according to Dr W, I don't need to worry about my B12 levels, or my thyroid (and I'm taking 2000 IU of D-3 every day, too, along with a daily Centrum Silver Ultra Women's vitamin).
    When I went to see her to get the tests ordered, she said I didn't have any nodules, which is not what she told me when she got the results of the ultrasound of my thyroid. I got a letter from the endo saying that she got all my test results, and it will be 4 months before I can get an appointment to see her for my diagnosis of multi-nodular goiter. So according to the test results, I do have nodules, but my primary care Dr is saying I don't (bitch is blowing off my concerns, just like I thought). Good thing I decided I needed to see an endo.

  7. Try and get the record of your nodules, seriously, they will send you the film, you will have to send one of those signed forms in or go and fill it out. I know they blow off a lot. Nodules can cause a lot of thyroid problems and vaccilating TSH too. I'd probably be dead myself if I hadn't gone to endos. The family doctors just aren't that good at endocrinology. My best doctor was guy who was internist and endocrinologist at once!

  8. I am 35 years old now married woman and I have experienced loads of depression.I went back to my doctor and then she said that my thyroid was underactive. I am currently taking desiccated bovine thyroid to relieve my mild depression. So far, it is working for me.


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