Hi all,

I recently found out that I have gone undiagnosed with hypothyroidism for many years, while simultaneously my FIL who has undergone IMRT has developed the same problem. After reading a bit about it, I am shocked at how common people suffering with hypothyroidism are either undiagnosed or undertreated (even by endocrinologists) and thought I'd pass this along to you guys. Please feel free to share your own opinions/experiences as I'm still new to the topic but find it very important for cancer survivors to go beyond what their doc tells them and do a little extra research.


Is Your Hypothyroidism UNDERtreated?
Is undertreatment preventing you from feeling well?
By Mary Shomon, About.com Guide


If you're on thyroid hormone replacement, have a TSH level that's in the normal range, and are still having a range of thyroid-related symptoms, you may be one of the millions of thyroid patients suffering from undertreated hypothyroidism and can benefit from a discussion with your doctor about optimum TSH levels and thyroid drug options.

What is undertreated hypothyroidism? It's hypothyroidism at the cellular level that means you still have hypothyroidism symptoms such as fatigue, weight gain, depression, fibromyalgia/muscle & joint aches and pains, hair loss or coarse/dry hair, infertility and more --despite taking thyroid replacement and having a "normal" TSH level.


There are two reasons this can occur. First, some doctors believe that providing only enough thyroid hormone to get a patient to mid to high-normal TSH levels is sufficient. And second, the current standard treatment, levothyroxine (brand names include Synthroid, Levoxyl, Levothyroid, Eltroxin, Euthyrox) may not be enough for the majority of people to actually feel well, because the body also needs a small amount of the hormone T3 in addition to the levothyroxine in order to truly feel well.

TSH Levels

The endocrinologist I see periodically, as well as my regular physician, both believe that a TSH of around 1 to 2 is optimal for most people to feel well and avoid having hypothyroid or hyperthyroid symptoms. There is also research that suggests that values above TSH of 2 may actually even represent abnormal levels. See the British Medical Journal for more information on that research.

And as of March 2003, it is the official recommendation of the America Association of Endocrinologists that the normal range for TSH levels is .3 to 3.0 -- Read the information here. I know I feel terrible at a TSH level of 4 to 5, I also feel bad when it drops too low to .2, but I pretty best at a TSH of between 1 and 2.

(NOTE: TSH levels are usually kept lower than 1 to 2 for thyroid cancer survivors -- a process known as thyroid suppression -- to help prevent cancer recurrence.)


TSH Levels

TSH Less than .5/.7 -- This is considered hyperthyroid (too much thyroid hormone) at most labs in the U.S. You may be anxious, find it hard to sleep, hair falling out, diarrhea, and other symptoms

TSH 1 to 2 -- The optimal normal level for most people. This is the TSH range where the majority of people feel best. It is sometimes considered "too low" by less-informed doctors.

TSH 2 to 4.7/5.5 -- "Normal" range according to some lab standards, but the recommended top end of the range was changed as of March 2003 to 3.0 Some people feel well in this range, but many suffer low-grade hypothyroidism symptoms at this level.

TSH 4.7/5.5 to 10 -- Formerly considered "subclinical hypothyroidism" levels, but as of March 2003, above 3.0 is considered evidence of possible hypothyroidism. These levels show hypothyroidism, but amazingly, some doctors won't even treat these levels, and do not attribute hypothyroidism symptoms felt by patients at this level to the hypothyroidism itself. Many people have symptoms at these levels.

TSH Above 10 -- Considered hypothyroid that merits treatment by most doctors


The Need for T3

Some people do not feel well on a levothyroxine/T4 only drug (like Synthroid). I am one those people who feels far better taking T3. I take the drug Thyrolar, and it has worked far better for me than Synthroid. Others have had success adding T3, such as in the form of Cytomel or via compounded, time-released T3, to their levothyroxine. Finally, yet others have had success with Armour, the natural thyroid hormone replacement. For more information on the various thyroid drugs, see A Quick Look at Thyroid Hormone Replacement, and Armour Thyroid and Thyrolar: Alternatives to Synthroid and the Other T4-Only Drugs.

Surprisingly, It's still considered controversial to use T3 for people with hypothyroidism by the less innovative or accepting members of the medical world, despite research that clearly demonstrates the need for T3 in many thyroid patients. In February 11, 1999, the New England Journal of Medicine published a groundbreaking research report that says that many patients feel better on a combination of T4 and T3, not T4 (i.e., Synthroid) alone. Many people have a normal or even LOW-normal TSH level, yet still suffer continuing hypothyroidism symptoms. In these cases, the addition of T3 helped relieve depression, brain fog, fatigue and other symptoms. This information about T3 is quite revolutionary and has major implications for people who don't feel well on their current thyroid therapies!!! For more info, see my full report on this research.

Marma

This time I do agree with your warning and concern. The sad fact however is that most doctors will refuse to treat anyone within the "normal" range and worse yet, almost all PCP and ROs use the lab standards of the upper level being 4.5 to 5.5 instead of the 3.0 recommended almost 7 years ago. A major issue is that if you do not have a TSH level test done before radiation & treatment, then you do not have a baseline to compare.
Last year, my RO and ENT had said my TSH level test was "normal" since it was under 4.5. (4.3 and last month 4.2). However I just dug up a forgotten TSH test showing I used to be 1.6. (It was done six days before they discovered my cancer as part of a cardiologist workup so the results came in while I was devastated and did not notice them tacked on) I have high hopes that a January appointment with an endocrinologist will get me treatment to get down below 2. Still no guarantees that she will even treat me. So frustrating. I have a back up appointment with another endocrinologist at my CCC in February in case this first one won't help.
The lesson here is for new members to get a TSH level done before TX so they can at least argue about getting help later.
Thanks for posting this
Charm

Charm,

I have been reading a lot about thyroid. I called a few compounding pharmacies in my area and the only one who would help me said that most endos are pretty old school in their treatment of hypo...one referred me to a family physician because he was the only one he knew of who prescribes natural thyroid which seems to work better for a lot of people. If I am put on sythetic I will also request to have it combined with T3 but right now it will be 3 months until I get into the endo and must rely on my PCP whose knowledge is limited.

My suggestion is Try a compounding pharmacy and ask them if they know and docs who will rx natural thyroid and go from there. However ideally it should be an endo not a regular doc but endos are slower than dinosaurs when it comes to the latest data aren't they? I guess it's a big mess all the best.

I am still figuring out how valid this lady is but many claim her to be a thyroid patient advocate and here is her info on finding a good doc:

http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/

"Another great option is to approach the Pharmacist (NOT the employees) at a large pharmacy, and ask who tends to prescribe desiccated thyroid. Most Pharmacists are friendly and will let you know. Don�t hesitate to go to more than one Pharmacy. To strike Bingo, see if there is a Compounding Pharmacy nearby or check your Yellow Pages for one, or go to Google and type in your city and �compounding pharmacy�. Doctors who use Compounding Pharmacies tend to prescribe desiccated thyroid!"

http://www.project-aware.org/Resource/Pharm.shtml