I though I might post this as it is the email I have sent to my GP. I doubt if she will take any notice, but it made me feel better sending it. It says what i wanted to say at the surgery but got too flustered with her response.
I though it might be useful for others to copy and paste?
Following my appointment last week, I have arranged for a blood test for Friday. Although I know that this will be 'within range' ( I am guessing at around 1.2) I have sent you a couple of articles regarding the dosing of Levothyroxine.
In the light of these, I would ask that you perhaps reconsider seeing if I feel any better on a higher dose of Levothyroxine? The articles below recommend a level of 0.2- 0.5.
I do still want to be referred to an endocrinologist so that I can get the full T3 / T4 levels checked as well please.
Dr Tony Toft is consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, and a former president of the Royal College of Physicians of Edinburgh and of the British Thyroid Association
What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated - 18- 22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal -that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).
Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable.
The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.
While taking both hormones it is important serum TSH is normal and not suppressed.
Latest Update: April 22, 2013
Avoiding the "Tyranny of the Test"
Finding Your Optimal Dose of Thyroid Medicine
By Richard Shames MD, with Karilee Halo Shames PhD, RN, HNC
As a General Practice physician who has been providing thyroid care for over 30 years, I am continually surprised by my patients' stories of their experience with endocrinologists. Many times patients tells me that they had just begun to feel slightly better on thyroid medicine when their specialist said, "This is it. We can not increase any further. Your tests tell me you're presently at just the right dose." Evidently they had started working with this doctor right around the time of the low thyroid diagnosis. They had begun a low dose of maybe 75mcg. of Synthroid, and were beginning to feel better than rock bottom, but not great. Now, some years later, they are still feeling only partially back to their original full self.
They keep telling this to their specialist, who then keeps responding, "we can't increase the dose any further. Your tests are fine now."
When confronted with what may be unfair tyranny of the test, I generally tell my patients they have several options. Any one of their choices might boost them up from their present partial recovery to perhaps 90 or 100% of their prior full function. These options include:
Controlled trial of more thyroxine
Switching brands of thyroxine.
Adding some T-3 (Cytomel) to the thyroxine regime.
Switching to Thyrolar (brand name mix of T-3/ T-4).
Trying animal thyroid (Armour or Nature-throid).
Boosting any medication with natural therapies.
This present discussion will focus only on option #1. (Stay tuned! Our write-up of the other options will appear in later articles on this website.)
First of all, 75 or 100 mcg. of thyroxine are a modest dosage for most adults. A well-known professor of endocrinology is convinced that a good "rule of thumb" eventual dose for most of his patients is one microgram per pound of body weight. For instance, a woman who weighs 137 pounds might do well with 137 mcg. of thyroxine (a few brands other than Synthroid are available in pills at this exact dose). A man who weighs 175 pounds might do well with the 175 mcg. pill. Before acquiescing to your doctor's test-result edict of final dose, you might want to ask for a short clinical trial of the medical center professor's protocol of "one mcg per pound of body weight". Keep in mind that the rule of thumb dosage is only a general initial guide, and that it might not apply well in cases of obesity.
If your doctor says "no, I realize you would like more medicine, but I don't think that is wise considering your test results," then you might want to look at your tests very carefully. Most likely your doctor is talking about the level of TSH (thyroid stimulating hormone). Many physicians are wrongly seeking to have their patients arrive at a TSH level that is in the mid-normal range. In actuality, the mid-normal range is a great target goal for most blood test results. However, it is not generally the most sensible goal of therapy for thyroid patients taking thyroid pills. Instead, for most thyroid sufferers, the goal of therapy should be to achieve a TSH near the low end of the normal range. Let us explain why.
The "normal" range of the TSH test generally runs from 0. 4 - 5.2. When I consult with people who call me from different parts of the country, I suggest to them a therapeutic target range of 0.3 - 0.5. This is at the low end of the test's normal range, not the mid-normal. The reason I do this is that most people who are suffering from low thyroid are ill because of antibodies from the immune system wrongly attacking the thyroid gland, and thereby compromising its function.
This immune attack is often lessened when the thyroid gland is stimulated as little as possible by TSH. Recall that TSH means "thyroid STIMULATING hormone". Rather, the person generally does better when her body runs on thyroid hormone pills, allowing the gland to be in a mostly unstimulated, resting state. The gland thereby receives a well-deserved vacation, in order to heal and repair the immune system damage that caused the illness in the first place.
Sometimes, both patients and doctors are concerned about this maneuver -- called "TSH suppression" -- where the TSH level is suppressed to just at or just below the lower end of the normal range. They evidently feel that giving the thyroid gland a healing vacation will cause harm or result in the gland being irreversibly turned off. After working in this way for a great many years, consulting for with numerous university specialists, and combing the relevant medical literature, I am totally convinced that thyroid glands are not at all injured by this maneuver.
If you haven't yet begun to feel as well as you would like, then you get to look at this TSH issue very carefully. If the dose of thyroxine you are currently taking (Synthroid, Levoxyl, Unithroid, Levothroid, L-thyroxine, Levothyroxine) has not resulted in a TSH that is down to the lower end of the normal range, then you may not be taking enough medicine. Neither I - nor any other doctor - can promise you that simply taking an amount of thyroxine to reach a TSH of 0.3, or 0.4, or 0.5 will give you full and lasting resolution of your thyroid difficulties. But I can tell you this - it is the next thing to try on your journey to full recovery. You may well be getting short-changed due to an under-informed or overly cautious medical provider.