Should I ask for a higher dose of Levothyroxine?

[isolda_m]

I was wondering if any of the knowledgeable people here would give me some advice. I was diagnosed with hypothyroidism about four years ago after feeling terrible for about ten years. I was put on levothyroxine, and the dose was raised a couple of times until it reached 0.75mcg. It took about three years on the medication before I started to feel 'normal'. I am no longer exhausted all the time, I am (slowly) losing weight, and I am no longer so clumsy that I fall over while just walking. I feel pretty good, in comparison to how I felt for so long.

The nurse practitioner I was seeing was pretty conservative about raising my dose of levothyroxine. She would not raise it when I was feeling crappy 18 months ago and my TSH it was 4.95ulU/ml (0.34-5.60ulU/ml). I got the idea that it could be dangerous to take too much levothyroxine. However, she left the clinic that I go to and they assigned me to a new nurse practitioner. I had a blood draw in July, and my TSH was 2.87ulU/ml (0.34-5.60ulU/ml range). I told the nurse I was feeling pretty good, and she said that she would normally suggest that I up my dose with those numbers, but that she would leave it as is since I was feeling fine.

Since then I've been thinking I should go back and ask her to up my dose. I feel OK, but I don't have near the energy that I had when I was younger (I'm 52). Occasionally I still have days when I am tired and lethargic for no reason.

Do you think a higher levothyroxine dose would help? Is there any reason I shouldn't ask her to raise the dose?

[Treepie]

Your TSH should be about1 or below ,so you could have an increase .

You really need to know FT4 and FT3 plus vitamins B12,ferritin,folate ,and D3 .

[isolda_m in reply to Treepie]

Thanks for the reply. They won't test T3, and will only test Free T4 if TSH is out of range. Should I make a fuss, even if I feel pretty good? I've had ferritin, B12 and D3 tested in the past, when I was very fatigued all the time, and they always came out fine. I've never had folate tested. Is there some reason I should have it tested now?

[SeasideSusie Remembering]

isolda_m

TSH is not the whole picture. It's not a thyroid hormone, it's a signal from the pituitary to tell the thyroid to produce thyroid hormone. To measure thyroid hormone you need Free T4 and Free T3 tested , it's those tests that tell you if you are optimally medicated. Doctors seem to have an information bypass where this is concerned.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

75mcg Levo is a low dose, the average is around 150mcg. If you feel there is room for improvement, and your TSH shows that there is, then ask for an increase. Protocol is to retest 6-8 after any dose change, then readjust dose again if necessary.

When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

For best absorption, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[isolda_m in reply to SeasideSusie]

Thanks, that is very helpful. I've had Free T4 tested before, but they don't usually test that unless TSH is out of range. I've asked to have Free T3 tested before, and been told no. Is it important enough to make a fuss about? I thought TSH was a good proxy for T3? Perhaps I can persuade the new nurse practitioner I'm seeing now.

[SeasideSusie Remembering in reply to isolda_m]

isolda_m

TSH doesn't always tell us anything about our level of thyroid hormone, although generally with a high FT4 the TSH will be low because the pituitary has detected there is enough thyroid hormone. Conversely, TSH will be high if the pituitary detects there is not enough thyroid hormone and then the FT4 would be low.

TSH doesn't necessarily tell us about FT3 in my experience. You can have a suppressed TSH with an over range FT4 yet FT3 can be low in range, and that of course would tell us that we don't convert T4 to T3 very well.

Here in the UK it's usually the lab that decides if FT3 is tested even when requested by the surgery, and they tend to only do it when TSH is suppressed. This is why hundreds of us here do our own private tests to get a full picture of our thyroid status.

[isolda_m in reply to SeasideSusie]

I've always been a bit confused about what FT3 and FT4 tests were for. You explained it beautifully. I guess I'll make an appointment and see what the nurse practitioner says. Thanks very much for the help.

[Treepie in reply to isolda_m]

As Seaside Susie says many use private testing as the NHS usually will not cover all the tests.