Hi, I wonder if anyone can help. I mentioned a while ago, that my Doc said they were giving me too much thyroxine, and suggested a slight decrease. I commenced alternate days of 75mg and 100mg thyroxine, and have had a recent blood test, and have been able to obtain the results, which are as follows :-
Serum TSH level 0.06 mIU/L (0.30 - 4.50). Doc said this was up from 0.04?
Serum free T3 level - 4 pmol/L (3.1 -6.8)
Serum free T4 level - 19.3 pmol/L (10.0 - 22.0)
Doc has now said to reduce to 75mg with possibly adding 100mg a couple of times a week.
As I’ve been happily taking 100mg for years, and not checking any of these levels, I’m now in a quandary and think I should have been paying more attention!
I think part of the over medicated aspect has come about, because for years I was taking thyroxine first thing, and immediately having breakfast. Then came the notice on the prescription to wait half an hour before food and caffeine containing drinks, which I ignored for quite a while, and then thought I’d better follow the guidelines!
Thanks.
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Lizzery
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How do you feel with these results is the more pertinent question because you're not overmedicated according to your FT3 and FT4 results. In fact your FT3 is rather low, implying poor conversion. It sounds like your GP is only going by your TSH only, which is incorrect. According to your bloods you certainly dont look overmedicated.
Prior to the Doctor advising they were giving me too much thyroxine, I had been having occasional palpitations, and I was getting an extremely hot face on occasions. I do still get hot sweats now and again, but my face felt as if it was burning, not sweaty, but would return to normal quite quickly. I’ve no idea if this is a symptom of being over medicated, or just some weird thing that happens now and again. As I’m taking steroids and leflunomide for RA, it can be very difficult to know what symptom could be attributed to what!
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Did you do your test this way?
Also, the way to take your Levo is one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only 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.
Serum TSH level 0.06 mIU/L (0.30 - 4.50). Doc said this was up from 0.04?
The difference is negligible. TSH fluctuates all the time and wouldn't even be the same if you tested at 9am and again at 9.05 and 9.10 etc.
Serum free T3 level - 4 pmol/L (3.1 -6.8)
Serum free T4 level - 19.3 pmol/L (10.0 - 22.0)
These are in range. The FT4 is 77.5% through range and the FT3 is 24.32% through range.
Your GP is looking at TSH only and this doesn't give an indication of our thyroid status because it's a pituitary hormone, not a thyroid hormone. The thyroid hormones are the T4 and T3 and you can see that these are in range. You are not overmedicated and you do not need a dose reduction.
In fact your conversion of T4 to T3 is poor, we can see this by the fact that you have a high in range FT4 level and low n range FT3.
Poor conversion can be due to low nutrient levels, we need optimal levels for thyroid hormone to work properly and good conversion to take place so it's important to test
Vit D
B12
Folate
Ferritin
Ask your GP to do these, if not then you can do them with one of our recommended private labs.
Thank you so much for your detailed reply. I think I may have to use one of the recommended private labs, so that I can see a complete picture to make sure I’m taking the correct amount of thyroxine. The Doctor I had been seeing for years has retired, and I don’t feel quite as comfortable with the one I’m seeing at present. He was very approachable, and I trusted his advice. In fact I had asked him about my thyroid results not long before he retired, and he said although it was a little high he had ignored it. He was a great believer that symptoms ruled rather than test results.
It is a great shame your GP retired. He was right, symptoms are the primary measure of your condition and should be the primary determinant of changes in medication. Your symptoms are also with you 24/7. In contrast a blood test is a single snap shot of a laboratory's estimate of what is happening in your blood. They should be treated with some caution and used to confirm and to help tease out why your symptoms are as they are and help guide treatment. Blood work is useful but secondary to clinical symptoms. Sadly "modern" medicine has lost it's way and lab work has become an inappropriate crutch on which it leans rather than a tool in the kit bag of the skilled clinician.
Thank you for your reply. Yes he was a great Doctor, who was always the voice of reason. Because I was brought up in the era of not ‘bothering’ the Doctor, I’ve always found it difficult to put across my concerns, and he was able to see through my ramblings, and get to the heart of the matter. I was hoping he was going to be around for my old age, but he took early retirement, as the day to day red tape of his work, became too much.
As I take other meds for PMR/RA, and am doing very slow reductions to lower my steroid dose, it can be hard to distinguish what is going on. Whether the burning face, and occasional palpitations are to do with that, or thyroid issues, I don’t know.
Hi Lizzery. Your story is very similar to mine. I had partial thyroidectomy in 1999, and more or less been happily going along, being over medicated, according g to blood results most of that time. My gp was happy to prescribe 150g, because he also thought how I felt was more important than test results. Unfortunately he has since retired, and I am now constantly being told I need to reduce dose, which I have done. I am now taking 125 levothyroxine, and feel dreadful, just can’t get myself going at all, especially first thing in the morning. I am still being told my dose is too high. I am now considering a consultation privately. Good luck with your ongoing investigations 😌
Thank you for your reply. It’s so difficult these days, as I think some of it is ‘computer says’, so it must be right! I think it’s important to see the same GP if you can, and even then you sometimes feel they are seeing the disease and not you. I think I may try private blood tests initially and see what that brings up.
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