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Claire, one of our lovely moderators on the forum, put together this incredibly informative post on hypothyroidism, TSH levels and doctors…

Just a little background. I was diagnosed with Hypothyroid in June of 2005. After over a year of fighting with doctors I finally reached a TSH level below 3.0 in August of 2006.

I am not a doctor, nor a health professional. I’ve read, experimented, and suffered through this thyroid maze. As I would say if you came to me with someone else information, please take everything I say about my treatment with a grain of salt. What works for me may not work for you, but I feel it’s important to give you an idea of what can be done.

The reason I had so much trouble with doctors is that many of them have been out of med school longer than the newest findings.

As of 2002 the AACE (American Association of Clinical Endocrinologists) published new findings on the correct thyroid levels in most individuals. No longer is the range between .5 and 5.0 but a smaller range of .3 to 3.0

The full AACE Guidelines can be viewed by clicking this link.

What does this mean? That many many doctors are under treating their patients. Even more frightening is that there are doctors who have not been updated on thyroid function for an even longer period of time and think that a TSH level under 10 is appropriate. Luckily those doctors are few and far between. What this teaches us is that educating oneself on ones health matters is most important. We assume that doctors are knowledgable about all health matters. The truth is, scientists and specialists come to new findings every year and general practitioners are the last to know. Doctors are well educated on health matters, unfortunately, they are well educated within the time frame in which they went to medical school. This leaves several years of updated information that they have not had access too. Even more frightening is that many of them dismiss new findings if such information is brought to them by a patient.

If you are hypothyroid and still suffering with symptoms and your doctor is telling you that your thyroid is functioning normally it is time to start taking control of your situation.

First, obtain a copy of your most recent lab work. Find out what your thyroid levels really are. Second approach your doctor about what issues you are having. If he is unwilling to listen, then you have a couple of options.
A. you can take in a copy of the AACE’s newest research {http://www.aace.com/public/awareness/tam/2004/tsh.php}, a copy of a checklist of your symptoms {http://thyroid.about.com/cs/hypothyroidism/a/checklist.htm}

If you have any other symptoms that seem abnormal to you, but are not listed, please list them as well. Recently, I’ve discovered that overnight leg cramps is also a symptom of hypothyroid.

B. you can switch doctors.

You may have to do B. anyway, if your doctor is unwilling to work with you. The best thing you can do is request to be sent to an endocrinologist. If your doctor is unwilling to refer you, you are not without hope. Most insurance companies have patient outreach programs. Obtain a copy of your records, including blood tests ( you have the RIGHT, buy law to get copies of your medical records), a copy of the AACE’s findings, a list of ongoing symptoms and a letter requesting referal to see a specialist. It is possible to go over your doctor’s head in order to do this. You can also switch doctors and request this of your newest doctor. Be warned, even some endocrinologists go by an older TSH scale. If you find this to be so, request a second opinion.

Most important, do not think that the doctor knows more than you. You, and only you truly knows how you feel. Do not worry about offending your doctor. As it is, your doctor doesn’t seem to worry about offending you. You are the boss in this situation. He works for you, if he is unwilling to do his job, then you’ve every right to hire someone else.

Once you find someone willing to work with you ( and if you already have, thank your lucky stars) do not expect your symptoms to eleviate as soon as you start a new dosage. Do not expect your symptoms to eleviate as soon as you reach a healthy TSH level. It’s going to take some time for your body to begin to heal itself. However, you will notice some changes within weeks.

Anatomy image of the thyroid gland courtesy of UpToDate.com

The Thyroid also changes with time. As you begin to reach a healthier TSH level things may plateau and you may have to adjust your meds as needed. It’s not uncommon to reach a healthy TSH level and a few weeks later begin to feel bad. It’s important that within the first year of reaching a healthy TSH goal to be checked every 3 months. After that it’s important to be tested twice a year. Some doctors say only once a year is enough, this is not true. Thyroid levels change with temperature changes. One of the best ideas is to check your thyroid levels a few weeks into the first cold snap of winter and within the first few weeks of summer heat. Many thyroid patients find they need to adjust their dose with the extreme temperatures of both seasons. Cold weather slows thyroid function, hot weather tends to call for less thyroid supplement.

It is also not uncommon for a short period of time in which you have a few of the sensations associated with HypERthyroid upon starting a new dosage. I’ve found the best way to avoid this is to titer up. My doctor is willing to work with me on this. This consists of me cutting pills and slowly adding till I reach my newest dosage level. Thyroid hormone takes time to build within the system. This is why titering up works in many cases. This is also why you do not retest your thyroid till 6-8 weeks after beginning a new dose. If you decide to titer up, do not retest till the 6-8 week mark after you reach your INTENDED dosage. My pm box is always open if you have additional questions about this. It is important to discuss this with your doctor as well. Do not raise your dosage above what he recommends till you’ve had your TSH checked. Then be sure to inform him of anything you intend to do, so that you may have another test lined up.

There is no magic number. Not when it comes to TSH, not when it comes to dosage. The ideal setting is for you and your doctor to work together by using both blood work and how you feel.

When taking thyroid meds it’s important to understand a couple of things. First, any food or vitamins taken with the thyroid med will change the absorption rate of the hormone. Your best bet is to take the thyroid med first thing in the morning and an hour before and after eating. So, no food for an hour on either side of taking your med. Even more important is delaying the taking of vitamins. Especially iron and calcium. Both of those can have an effect on the way your body absorbs the thyroid hormone. It is best to take your vitamins either in the middle of the day ( 2-3 hours) after your hormone or at night ( 6-8 hours) before.

If, you are the type that has to eat first thing in the morning then know that you must follow the pattern every day. If you eat less than an hour after taking your thyroid hormone then it is important to follow this habit daily. It is also important to stick to a similar breakfast food. For instance if you drink milk, it will have an effect on how your body absorbs the hormone, so it’s important to have dairy at the same time, every day as to keep the hormone absorption similar.

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