Hypothyroidism update and worthless doctor rant

11th March 2009

Hypothyroidism update and worthless doctor rant

posted in Drugs & Medications, Health, Nutrition & Fitness, Mind & Body, Personal |

Another update to share in my ongoing saga to treat my hypothyroidism…

In November, I reported that the new Cytomel regime had ameliorated some of my symptoms. I’m continuing to see improvements — especially after arbitrarily upping my dosage when my endocrinologist refused to do so (my doctor prescribed a half-tablet daily; I began taking the entire tablet daily, in effect, doubling my dosage — I generally don’t recommend dismissing your doctor’s instructions). In addition to her reluctance to increase my Cytomel dosage, my endocrinologist was also unwilling to discuss the possibility of insulin resistance, a condition I was once diagnosed with at my highest weight. In fact, her only advice was to “eat less and move more,” despite the fact that I explained to her on two previous visits that I am already quite active and eat a healthy, vegetarian diet well below the caloric rate estimated to maintain my current weight (a metabolism test I took previously recommended this number to be optimal for me and my doctors agree this to be a healthy number, so no worries of relapse here).

My psychiatrist advised me to seek a second opinion and a doctor preferably associated with a university-type setting. There’s a waiting list weeks-long to see endocrinologists in my area, but I finally got in to see the new doctor yesterday. I’ll call her Dr. Awesome, because that is what she is.

Dr. Awesome recently left a university to open her own office. It took me a month to get in to see her and it was well worth the wait. I picked up my medical records from my former endocrinologist’s office before my appointment with Dr. Awesome. While waiting for the good doctor, I read through the comments made by my former doctor and staff. I saw this doctor three times last year. On my last two visits, she made the same notation: “Patient not experiencing symptoms of hypothyroidism.” First, I was dumbfounded. Then I began to get angry. The chief reason I sought out this specialist was precisely because I was still experiencing symptoms of hypothyroidism. Not only did she not address my issues, she didn’t even bother to notate them. What a supreme waste of my time and money. Just a note: Your medical records belong to you and you have a right to view them. I highly recommend reviewing your records periodically to ensure that your doctor seems to truly understand your symptoms and that your chart is accurate and up-to-date.

I explained my past medical history in depth to Dr. Awesome, including the fact that I upped my own Cytomel dosage. It didn’t seem to faze her; she wrote me a prescription for the higher amount since I seem to be responding well to it. She did advise me to split the tablet and take it once in the morning and again in the afternoon, since Cytomel is a fast-acting drug. I also relayed the former doctor’s advice to slash my caloric intake to what I consider an unsustainable and unhealthy number for me and expressed concern that counting calories would prove triggering; that it is not normal that only prolonged starvation and 3 – 4 hours a day of exercise ever resulted in any real weight loss for me; and that doing so doesn’t address the larger endocrinological reasons for the unexplained weight gain. She agreed.

Based on my labs from last June and persistent symptoms – dry skin, irregular periods, bouts of depression despite being on an antidepressant, easy bruising, unexplained weight gain, muscle cramps — Dr. Awesome said, “I’m going to check your thyroid levels again, but I don’t think your thyroid is the problem.” She discussed a number of possibilities, including Cushing’s syndrome, PCOS, Metabolic Syndrome, insulin resistance and hyperinsulinemia, and another disorder I find hard to remember, let alone pronounce. She ordered a full round of tests to be conducted, including a saliva test to measure thyroid and adrenal function. I’ve never been prescribed this saliva test, even though it’s much cheaper and, in some cases, more accurate than blood tests. According to Dr. Richard Shames:

A test hopefully gives the practitioner information about how much thyroid hormone is available at that place in the body where thyroid hormone does its job, and how well it’s working. The current blood tests do neither! They simply are an indicator of how much thyroid hormone is floating in the bloodstream. This is NOT what a doctor ideally needs to know. For instance, I – as a thyroid practitioner – would like to know how much thyroid hormone has gotten from the bloodstream into the tissues, where it would actually do its work.

Dr. Awesome also advised me to have all my blood work done in the first week of my cycle, another bit of information that has never been provided to me by the two family doctors and specialist I’ve sought out for hypothyroid treatment.

So, things are looking up. I’ve got a few weeks yet before the tests will all be done and completed, but I’ll keep everyone posted on any updates and new findings. Here are the links to the series on hypothyroidism I did previously.

Click to Bookmark

This entry was posted on Wednesday, March 11th, 2009 at 12:23 am and is filed under Drugs & Medications, Health, Nutrition & Fitness, Mind & Body, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

1 On March 11th, 2009, lilacsigil said:

Yay for you and for Doctor Awesome! I’m appalled (but not surprised) that your former doctor made your records into what she wanted, rather than the actual symptoms you reported. Yes, it’s much easier to have a perfectly healed patient – but then, they wouldn’t be a patient, would they?

posted on March 11th, 2009 at 3:04 am

2 On March 11th, 2009, Lisa said:

I’m glad your search for a second opinion went so well. It’s nice to hear good stories about medical professionals.

posted on March 11th, 2009 at 9:13 am

3 On March 11th, 2009, Shinobi said:

We really need to find a good endocrinologist for my boyfriend. (Ideally one that might work with us on prices.)

Do you know of any good resources for finding a good specialist?

posted on March 11th, 2009 at 10:20 am

4 On March 11th, 2009, Rachel said:

Shinobi — Not sure about the cost issue, but when finding my second opinion, I asked the office staff if she focused more on diabetes or thyroid issues. I was told that this doctor sees about an equal number of patients with thyroid and diabetes issues. Also, as my psychiatrist suggested, I’d recommend finding someone within a university type setting because they are more apt to be up to date on current research and are generally more willing to explore alternative treatment options.

Thyroid patient advocate Mary Shomon publishes a “Top Doctor” list for hypothyroid patients, but it’s very sparse. There is only specialist listed in the entire state of Ohio, for instance, and he’s on the opposite end of the state as me. Perhaps you will have better luck.

posted on March 11th, 2009 at 11:02 am

5 On March 11th, 2009, Sandy said:

My endo is currently testing me too…but used the blood test (I had to see her for gestational diabetes). I have almost every single symptom (and have had for a very long time) on the list. I am scared though that there is just enough of a variation to give me issues, but still be within acceptable levels. You see…my ob/gyn checked it when I was pregnant last year and my levels were fine…

Any advice to what I can do if she says the levels are fine? My hair comes out in clumps, most days I have no energy to eat much less anything else…which is hell when you have 2 kids at home! I can never get enough sleep and not matter what exercise regimen I start I can’t even seem to lose 1lb where I used to just park far away in the parking lot when I go to the store and drop weight lightening fast.

posted on March 11th, 2009 at 1:06 pm

6 On March 11th, 2009, Shannon said:

I’m glad it’s looking up for you! It really is hard.

The one other bit of advice I can give is to get your blood drawn first thing in the AM. I found out (online) that TSH levels can show as lower (meaning you look fine) in the afternoon and higher in the morning. I found that out AFTER I had a test that came out in the 1.something range only two weeks after a different doctor tested me at 3.something. For the low range test the blood was drawn late afternoon and the other one the blood was drawn earlier in the day. From what I’ve read, many doctors don’t know about this and the ones who do seem to think the early morning reading is a false positive (why can’t the later readings be false negatives???). Whatever, but now I make sure my appointments are the first thing in the day every single time. I refuse to have blood drawn in the afternoon. It took me YEARS to have a doctor take me seriously and the difference between me on armour and me not on it is priceless. It’s worth it to wake up early and make sure I stay on my magic pill, LOL!

I’m very interested to see the results of your saliva test. I haven’t yet had a doctor who seems to know about them. Sigh. Good luck

posted on March 11th, 2009 at 1:42 pm

7 On March 11th, 2009, spacedcowgirl said:

I am infuriated just reading about your former doctor’s dismissal of your symptoms. I’m sure there was more going on than just this, but it’s clear to me that she either ignores the self-reported symptoms and dietary/exercise habits of all of her patients, or just the fat ones. Neither is acceptable. Like you said, what a waste of time and money! I actually feel sort of bad for the insurance company that this doctor is accepting payment for essentially doing nothing two-thirds of the time.

Incidentally, I want to smack anyone and everyone who uses the phrase “eat less, move more.” O RLY?? YOU DON’T SAY.

posted on March 11th, 2009 at 3:06 pm

8 On March 11th, 2009, Jodith said:

I’m not at all surprised that your former doctor would write things like that on your chart. I used to get that all the time, along with “non-compliant” and “hysterical” simply because I insisted that I didn’t need a diet but I did need treatment.

Sandy, if you have all the symptoms, and your doctor won’t treat, then look for another doctor. Get a list of docs in your area and send them all a letter outlining your symptomology and the treatment you wish to try. Emphasize that you understand the problems of hyperthyroidism and you’re willing to be closely monitored on this treatment. You’ll get a lot of no’s and are-you-crazy replies, but you might also get someone who responds positively. I sent out 52 letters and got one yes and one maybe out of the bunch. It was enough to get a doctor willing to give my a TSH suppresive dose of thyroid. Don’t limit yourself to endocrinologists. In my experience, they are the least likely to be willing to experiment. I’ve found most success, actually, with Family Practitioners and Osteopaths.

My best advise is, don’t give up. Educate yourself about thyroid problems and be a vocal advocate for your own treatment. Don’t be afraid to walk out of the door if a doctor is uncooperative. You are a consumer. You have a right to refuse the wrong treatment and to shop for the best doctor for your needs.

What many doctors just don’t understand is that blood test results aren’t universal. They come up with those numbers by testing large amounts of people, and setting the criteria for “normal” where the vast majority in the normal range are asymptomatic and the vast majority in the abnormal range are symptomatic. That doesn’t mean, though, that there aren’t those in the normal range who are symptomatic or vice versa. Some people in the normal range really are sick and some in the abnormal range really aren’t sick. You can’t really totally on blood tests, which unfortunately, too many doctors do.

My best experience has been with either very old doctors (trained before the 70s) or very young doctors (trained in the last 10 years). Those trained in the 1970 to 2000 range are the ones who were taught this whole, the tests never lie mantra. Well, the tests do, indeed, lie. If your doctor insists on relying only on the blood tests, find a new doctor.

posted on March 11th, 2009 at 3:32 pm

9 On March 11th, 2009, Rachel said:

Sandy — Perhaps you should ask your doctor about a saliva test. Also, is she testing your T3 levels? My lab only tested these after my psychiatrist wrote a prescription specifically calling for it.

posted on March 11th, 2009 at 3:48 pm

10 On March 11th, 2009, La di Da said:

See my comment on the Obama girls post! (I’m reading out of order here, have been offline a bit.) You have my sympathies in trying to find a Doctor of Awesomeness. A thought – will she prescribe Armour? It may be worth a try. Some people just respond better to it than synthetics (and it also has T2 and T1 and calcitonin in it). I guess that might also depend on how strictly vegetarian you want to be, as it’s an animal product. My Aweseome Doctor did emphasise that if someone’s not had adequate treatment for their hypothyroidism, they may have adrenal fatigue, which needs to be treated before starting thyroid replacement otherwise the replacement hormones just aren’t going to work as well. Most doctors seem to only consider the adrenal extremes of Addison’s or Cushing’s disease but there are in-betweens that are not normal. I’m sure you’ve read about it on the thyroid.about.com site.

posted on March 11th, 2009 at 5:21 pm

11 On March 12th, 2009, Rachel said:

Yeah, I won’t take Armour because of the whole vegetarian thing. The saliva test is supposed to test adrenal function as well as thyroid and I think that’s more so why she prescribed it. As for Cushings… I don’t have the extreme fatigue characteristics of the disorder, but I do have a slight humpback. All women on my mom’s side of the family do. I was more worried about it than my overall weight in my wedding pics.

Oh, and have you heard that Thyrolar (synthetic of Armour) was discontinued? At least that’s what the doc said.

posted on March 12th, 2009 at 12:58 am

12 On March 12th, 2009, keshmeshi said:

I did some aptitude testing several years ago. One of those tests measured how good a person is at coming to a (correct) conclusion very quickly. (I believe it’s called intuitive reasoning.) If you score high on the test, then you have an innate ability to be a good doctor. While I got every question on the test correct, it took me forever to come up with the right answer.

When I hear stories about terrible doctors like this, who just want to pigeon-hole a patient into what the doctor wants to think is wrong, I can’t help but assume that the doctor has no innate ability to be a doctor. Maybe that doctor was proficient in math and science, and decided to go into a lucrative field. But it seems possible that a doctor like that is simply no good at taking in the symptoms and coming to a correct conclusion quickly, so just decides that all patients have to have condition X.

posted on March 12th, 2009 at 1:08 am

13 On March 12th, 2009, Voip said:

I have some concerns about my new endocrinologist and how he’s attempted to treat my thyroid, and I was wondering if you could help me figure some things out (you seem to be very well-learned on the subject, seeing as how ).

I just went to see a new endocrinologist last week, and I made the mistake of telling him I wanted to lose a little weight. I don’t really want to lose a lot, and I probably shouldn’t have mentioned anything (it just slipped out, I guess), because that one tiny little issue became the main focus of discussion between he and I. Immediately, he starts giving me a prescription for a dietitian because he’s certain that the issue of my weight lies in my diet, even though my weight has LOWERED recently without any significant changes to it over the past year. I try to explain this to him, but it’s even more difficult because he’s got such a thick accent and he’s talking at a million miles per hour, persistently ignoring me. I know that it’s an issue of physical activity, that I need to exercise more, and I’ll see some changes (note: my weight lowered because I had been so active, working at a very physical job). I don’t even want to concentrate on it that hard. Hell, I just think physical exercise would be good for me health-wise; I don’t even know why I brought up weight loss in the first place! I just wish he’d listen to what I had to say instead of firing off preconceived assumptions.
I went in to do some blood work the next morning and had a chance to speak to the doctor’s nurse. I told her that I’d rather pursue physical activity for my health, than for weight loss, and I asked her to cancel my appointment to see a dietitian, so at least that disaster has been averted. I’m still going back in April, though, and I’m nervous. There are no other endocrinologists available in my area under my insurance, so I have nowhere else to turn.

Anyway, if you could give me some advice on how to make our patient-doctor relationship work, I’d greatly appreciate it. I respect your advice and wisdom, O great and powerful F-word.

posted on March 12th, 2009 at 1:47 am

14 On March 12th, 2009, Shinobi said:

OOO thanks for that list. There are a bunch of docs listed in Chicago. We’re so spoiled here!

posted on March 12th, 2009 at 10:11 am

15 On March 12th, 2009, Rachel said:

Voip: I’d recommend finding a new doctor, but it sounds like your choices are limited. Is there anyone else in his same office you can see? If he’s your only viable option, I’d be upfront with the nurse in that you find it difficult to understand his instructions given his accent. You can also request that they give you their notes and reports from each visit in writing. Endocrinologists typically treat thyroid issues, but because the thyroid affects mood, psychiatrists can also address it to a limited degree. It was my psychiatrist who first ordered me tests to check T3 as well as T4 levels. She told me that psychiatrists sometimes prescribe thyroid medication if they feel it will benefit mood and depression.

Doctors in white coats can be intimidating, but I’d be frank and upfront with him (or the nurse if you feel more comfortable). Bring in a list of all the symptoms and health issues you are concerned about and give it to him or ask that it be included in your file. At your next appt., you can start off with, “Dr., I know we discussed weight and diet last time. I know our time is limited, so this visit I’d like to focus on x, x, and x.” When I saw my new doctor, I made it clear exactly why I was frustrated with my old doctor so that she would know where I stand and what not to repeat.

If you’re concerned that your weight gain (or inability to lose weight despite a healthy diet and regular activity) is more so related to your thyroid, keep a food and activity journal for a few weeks to show him at your next visit. Keep in mind, though, that I did this and my doctor still I just eat less and move more.

posted on March 12th, 2009 at 11:25 am

16 On March 12th, 2009, La di Da said:

@Rachel – I hadn’t heard that about Thyrolar, but we don’t have Armour etc on the shelves here in Australia, dessicated thyroid is compounded up by individual pharmacies. Which brings me to a suggestion: Is there a compounding pharmacy anywhere near you? If there’s not one you can physically get to, some will take orders over the phone/net. They will be able to make up a synthetic T4/T3/other stuff combo to mimic Armour for you. I know of people who do this because of veg*ism or religious beliefs. I know of others whose doctors prescribe them particular ratios of T4 and T3 and they get those compounded too. They can also make up slow-release T3, and sublingual pills too. I take my thryoid pills sublingually as my stomach’s not very good at digesting things and I get a stomach ache from random food/pills including thyroid.

posted on March 12th, 2009 at 9:35 pm

17 On March 14th, 2009, Paul Blake ND said:

Dear Rachel,
The whole thing about thyroid disease is a little bet insane to begin with.
Did you know that thyroid disease is really a very rare disease and yet there is an epidemic (1 in 4 people) of it in America. The truth is that an autoimmune disease such as Hashimoto’s or Graves disease gave you your thyroid disease. Autoimmune diseases are very interesting, there are aprox 80 to 100 at this time with another 40 waiting for a name. Medical science cannot explain why and has not found a cure for even one. You can trigger one of them just by having an auto accident, taking aspirin or by starting a new exercise routine says latest research. Naturopathic medicine says, “Look for the root cause. The cause is in the basics; beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Our arrogance has led us down the wrong path, we better stop and take a close look at what is happening. Autoimmune disease is the worst kind of contradiction; for thyroid disease your immune system is attacking you at your own thyroid, a world upside down. God bless you in your search.

Thanks
Paul

posted on March 14th, 2009 at 2:27 am

18 On March 14th, 2009, Rachel said:

I appreciate your perspective, Paul, and to a degree I agree with you that one’s diet, lifestyle, stress levels, mental health, etc… all factor into one’s health. I used to be very medication-resistant and only embraced alternative treatments, but my experiences with depression and ADD have shown me that sometimes medication is the best route to take. All the herbal supplements in the world could not alter the fact that I have brain chemical imbalances or a neurological disorder affecting attention and focus. I believe in a holistic approach to health, but one that also embraces professional medicine when needed.

posted on March 14th, 2009 at 1:30 pm

19 On March 18th, 2009, Sharon said:

Greetings all,

It just goes to show that every “body” is different -something the medical community is still vastly unaware of by choice. Granted, one should see their doctor, preferably an endocrinologist for this dis-ease, however, there are other options or “add on therapies” that can help tremendously as well.

One place I would whole heartedly suggest starting is the Kushi Institute in MA. Muchio Kushi is world renown for his work with disease and the macrobiotic diet. His work has been recognized by the Untied Nations, and our own government (can you believe it) is funding Kushi Institute research because of carefully documented cases they presented of totally healing individuals with macrobiotic foods. I won’t go on and on here, but do yourself a favor, go to their web site, and then call them. They are marvelous to speak with, and you may decide to go get an evaluation at the institute, or even stay a week for the intensive training in macrobiotic cooking to then go home with, armed with self help that works! Go to http://www.kushiinstitute.com.

Natural therapies can do wonders for the body. Accupuncture, homeopathics, nutritition, traditional chinese medicine, and ayurveda are some of the most “potent” practices finally to come to our slow to learn and dreamy medical shores.

They work. I know, because I was given 5 years with malignant melanoma and I am here and healthy 27 years later. So keep seeing your doctor, but dont EVER write off the power of nature until you have tried it.

With blessings to all,

Sharon – Clinical Nutritionist

posted on March 18th, 2009 at 4:33 pm

20 On April 16th, 2009, Fatigued? Check your vitamin D and B12 levels » The-F-Word.org said:

[...] with Dr. Awesome, my new endocrinologist, this week and wanted to give everyone an update. At our March appointment, she ordered a slew of tests to rule out every possible condition that might be contributing to my [...]

posted on April 16th, 2009 at 8:00 am