Advice needed......: Cut a long story short since... - Thyroid UK

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Advice needed......

amh6971 profile image
4 Replies

Cut a long story short since bring diagnosed with an underactive thyroid in 2008 i have always been on 125mg of Levothyroxine. Only exception is when i was pregnant and they upped it to 150mg. Over the last 12 months the dr's have played about with my medication and have set me on 125mg evety other day. Problem is i still dont feel 100%. The last thyroid test i had done by my dr my TSH was 1.4 which they said was "normal". I asked about taking 125mg evety day and he continued to tell me about all the negative things about being overactive which he said the increased dose would do. So i paid privately for a test done not long after the one done at the drs and these were the results:-

TSH 3.51 (0.270-4.200)

FREE THYROXINE 13.35 (12.000 - 22.000)

FREE T3 3.27 (3.100 - 6.800)

The only advisory was that many people feel better with a TSH under 2 but my drs are saying it is under 2.

Please help in reading these results.

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amh6971
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4 Replies
jimh111 profile image
jimh111

When you say 125 mcg every other day do you mean 100 mcg one day and 125 mcg the next day? The 'negative' things only apply when the TSH is very low, less than 0.4 (can't remember exact figure) and these are low risks until the TSH becomes suppressed, i.e. virtually undetectable. There are higher risks in keeping you undermedicated. I doubt that your doctor did the full thyroid panel with fT3 and fT4. The TSH is good for initially diagnosing primary hypothyroidism (a failing thyroid gland) but not very good for monitoring treatment. There is no correlation between TSH and symptom levels. Your blood tests show that you are undermedicated, we would expect your fT4 to be around 18 or 20 which usually brings the fT3 to around the mid-point. Some patients need more complex treatment but it makes sense to adequately treat you with levothyroxine and then review the situation. Based on these blood test results you should probably be on somewhere around 150 mcg levothyroxine. Your doctors need to look at the fT3 and fT4 also, not just the TSH. They need to look at your symptoms which are more important than the blood tests. Ask for an increase and take someone along with you so that you are not bullied.

shaws profile image
shawsAdministrator

Your TSH is 3.45 (so nearly 4) and we feel best when its one or below. They are 'happy' because your somewhere in range and that's because they are not au fait with thyroid hormone disease. It's like me picking up a cookery book - look at a wonderful cake and think I can follow the recipe and am disappointed if it's as flat as a pancake when taken out of oven. (I'm no Mrs Berry). So:

TSH too high

Free T4 - too low (free thyroxine)

Free T3 - too low - should be towards the top of the range not bottom. So having too low a dose (T4)

Result - you are on insufficient thyroid hormones. TSH should be 1 or lower. FT4 higher and FT3 towards top of range.

T4 is the inactive hormone and we have to have sufficient to convert to T3 the only active hormone required in our billions of receptor cells.

Blood tests should always be at the earliest possible time, and fasting although you can drink water. Leave about 24 hours between your last dose and the test and take afterwards. This gives much better results. We have to read and learn and we will get well, despite the endos and doctors who really are so unknowledgeable about the miserable clinical symptoms we endure and we should be symptom-free and feel well.

If you've not had B12, Vit D, iron, ferritin and folate done ask for these as we are usually deficient which also causes symptoms.

amh6971 profile image
amh6971

Thanks guys. I feel like i am banging my head against a brick wall with the drs. In the last 6 months i have gained over 20lbs even though i go gym 3+ times a week and eat healthy.

I do have a B12 deficiency which i get jabs every three months for.

amh6971 profile image
amh6971

Yeah 100 one day and 125 the next.

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