I just learned a lesson I wanted to share with all my fibromyalgia and chronic fatigue syndrome friends -- always double check what your test results mean!
I have autoimmune thyroid disease and recently had a flare up of symptoms. My regular doctor is out of town, but I happened to have a check-up with my rheumatologist. When she brought up getting some lab tests done, I asked her to add in a TSH (thyroid stimulating hormone) test. I got a letter in the mail with my results, which said my TSH level was 3.5 and therefore well within the "normal" range of .5 to 5.5.
Something about that didn't sound right to me, so I checked -- the 0.5-5.5 range is outdated! My colleague Mary Shomon, the About.com Guide to Thyroid Disease, has an article explaining that the range was changed in 2003, and now 0.3 to 3.0 is considered normal (by most doctors, anyway. It's somewhat controversial.) So I was right -- my thyroid meds do need to be increased. Now I need to call my GP's office and ask him to please have a look at the results.
I nearly didn't double check the range. First of all, I trust my doctor. Second of all, well, I forgot. You know how that goes. Fortunately, I was reading through some blog comments that dealt with thyroid issues and it jogged my poor, sluggish memory (so thank you doubly for those comments!)
I think this is a good lesson for all of us. On top of making sure the information is correct, we need to remember that the agreed-upon "normal" ranges may not be optimal for everyone, so were you perhaps borderline low or high? Do other people with your illness(es) function better within different guidelines?
An example of this last point, ironically, came in the same letter as my thyroid results. My vitamin D levels, which were technically normal a few months ago, are now up above 60 -- which is where my rheumatologist says a lot of people seem to feel and function better.
An easy way to double check results is with the Lab Test Interpreter. You can also look for a relevant topic in About.com's Health Channel, which includes more than 100 sites like this one.
The bottom line, as always, is: we are the ones who know our bodies best, and we all need to take responsibility for our treatment. In this case, a good doctor made a mistake on something that's outside of her specialty. If I hadn't caught it, who knows how long it would be before I could get proper treatment?
Have you had an experience like this? Do you double check what your doctor tells you? Leave your comments below!
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I definitely have had this problem with doctors who are not specialists interpreting tests as “normal”. I have a history of kidney problems (which no one can figure out — a result of 40 years of CFS, I wonder?). While my creatinine, a measure of kidney function, was twice normal years ago, for the past few years it has been either just at the high end of normal or just above normal, and most doctors look at that and say my kidneys are fine. But when I went to an endocrinologist this year, he red flagged my high normal test and sent me immediately to a nephrologist. He did other tests and said that, considering my size and the other test results, I was diagnosed with stage 2 kidney failure. In the ten years since my levels were really high, the ways of evaluating kidney function have changed, and most docs are not up on it, I have found. Also, the upper range among various labs varies wildly.
I’ve also had this issue with a family history of hemochromatosis, the most common genetic disorder in the US. It causes iron overload, which can damage organs, but when I ask docs other than gastroenterologists to do an “iron panel”, they always do the wrong tests (they test only iron levels — what needs to be tested are ferritin levels, TIBC, and transferrin saturation rate). Then they call me and tell me my iron levels are normal (when they do the right tests, my TIBC is high and TSR is borderline), and say that I’m not anemic (no kiddding! — my worry is too much iron!).
There really is such importance in those of us with chronic, multiple health issues getting, keeping and understanding our own test results.
By the way, when I have trouble getting test results from the doctors or their staffs, I call up the labs that did them, and I have found that they are willing to give me those results.
It seems like one of the major, if not THE major issue with finding a proper diagnosis for fibromyalgia is the lack of proven “methods” for testing. Inhernetly Fibromyalgia is a condition that is diagnosed by many doctors, which subsequently causes it to be mis-diagnosed in so many instances. The fact that you are having trouble even obtaining your results is just a microcosm of the hoops that fibromyalgia patients have to jump through to even become diagnosed with the condition, let along finding a proper treatment to correct fibromyalgia pain.
You might be interested in checking out this Fibromyalgia Diagnosis It is one of the only self tests for fibromyalgia pain that I could find, and it’s part of a treatment that is carried out by a podiatrist.
i have heard from numerous people that the pig thyroids meds are the best in cfs/fibro…
I also suffer from Hashimoto’s thyroiditis (autoimmune underactive thyroid) Some doctors in Europe (e.g. Germany and Belgium) actually consider anything over 2.5 to be hypothyroid (underactive thyroid), but the TSH alone is not always a reliable indicator as there are still those whose TSH looks normal who have thyroid disease. My fiancé is a classic example. His TSH was 1.5, but when the doctor did an ultrasound of his thyroid it was apparent that he had Hashimoto’s too.
In addition, for a proper diagnosis you really need to check the free (as in unbound and freely available to the tissues) T3 and free T4 – these are the actual thyroid hormones. The TSH, a pituitary hormone is only a Thyroid Stimulating Hormone that actually tells the thyroid to produce more or less hormone.
As for pig thyroid (or pigroid as I’ve heard some people call it:-)), in my own experience (and I have tried synthetic T4, a synthetic T3/T4 combo and the pig thyroid which is also known as NDT or Natural Desiccated Thyroid), it does work best and I have heard many people say the same. I guess this is because pigs are very similar to humans in their physiology and this is also the only product that contains all thyroid hormones our thyroid naturally produces – T1, T2, T3, T4 and calcitonin. I think because it is not synthetic it tends to be absorbed better by many people. Other brands include Naturethroid and Erfa from Canada. Sometimes people will not tolerate a brand or a brand will be unavailable, so it’s good to know that there are several brands available. There’s also a list of different types of NDT on the website Stop The Thyroid Madness (http://www.stopthethyroidmadness.com/options-for-thyroid-treatment/) – this is where I found out where to get ours as we live in Germany where it is not widely available …
(previous comment continued …) From what I have read about thyroid disease, CFS/ME and fibromyalgia, for many people thyroid disease (along with viruses such as Epstein-Barr et al) seems to be one of the underlying causes of these illnesses. I know doctors such as Jacob Teitelbaum (whom I was lucky enough to interview – his informative website is http://www.endfatigue.com) also try many of their patients on a sample of Armour Thyroid and Dr Lowe has found that something like over 90% of people with fibromyalgia find that their symptoms improve when they are put on thyroid hormone.
Of course, Mary Shomon’s site http://www.thyroid.about.com is a mine of useful information – I learned so much from it when I first got diagnosed. I recently launched my own website on thyroid disease and chronic illness (www.sarahjdowning.com).
I apologise if this is something that you all know already, but I wanted to add my two cents in case you didn’t – particularly with regard to the TSH not always being a reliable test on its own.
Wishing you good (and improved) health!
Sarah
Many hypothyroid patients report feeling well when their TSH is at 1 or lower and their Free T34 and Free T3 are at midrange or higher.
ThyroidManager.org, a respected thyroid research site, suggests aiming for TSH in the low part of the normal range , like 0.3-1.0.
Some need it much lower than that to feel well, and recent studies show that can be safe, despite widespread assumption that it can lead to bone and heart issues.