Since increasing my thyroxine to 100mg from 50mg, I did feel better. But lately not feeling great again. Pain in my thyroid again too. So asked GP to run tests, inc T3, as some of you guys thought it might be secondary hypothyroidism. Anyway, the results are back & GP saying I’ve gone hyper now, so suggested reducing to 100mg Mon-Fri, then 50mg Sat & Sun then re-test.
Just wanted to get your opinion on the results (AGAIN!!).
TSH - 0.02 (0.3 to 4.2)
FT4 - 17.7 (12 - 22)
FT3 4.6 (3.1 - 6.8)
Based on the TSH, they are suggesting I’ve gone overactive. I do feel a bit yuck - very sweaty & thyroid pain (which I felt when I had thyrotoxicosis in Feb).
BUT - the FT4 has increased (last result was 12.1) but it’s not at the top of the level.
Any insight? Thank you!!
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KayS68
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Did you allow a gap of 24hours between your last dose of thyroid hormones and the test? If not your results may not be accurate.
Few doctors know much about how to treat patients who're hypothyroid.
Like many other doctors, it looks like yours has only taken account of the TSH, while FT4 and FT3 are not optimum. Many adjust our dose according to the TSH alone when they should be trying to relieve our symptoms.
TSH is not a thyroid hormone, it is from the pituitary gland and tries to increase our thyroid hormones. We, the patients, want a TSH of around 1 or lower.
We're right, they're wrong. The TSH is not a thyroid hormone and it rises when our gland is failing. It is from the pituitary gland.
I think they rarely test the 'frees' unfortunately They are so poorly trained that they think the TSH is a thyroid hormone but it isn't. It rises when thyroid gland is struggling.
I had to ask them to check FT3, and they said they weren’t sure they could. I just feel I don’t know enough & don’t feel confident in pushing. I would rather they refer me to an endocrinologist, but I doubt they will.
You can't "go hyper" if you're hypo. You can become over-medicated ... but only if your free T3 goes over-range. At the moment, your free T4 is 57% through range and your free T3 is only 40.5% through range (although admittedly your TSH is suppressed). So a doctor who doesn't understand and goes only by TSH will have kittens - but actually you're a LONG way off being over-medicated.
If you don't feel great, it's more likely that you need to increase your dose rather than reduce it ... but if you think it's worth dropping back a couple of days a week to see if that makes you less "yuck" you might want to try it - but don't let them reduce your prescription, and ask if you can have an increase if it doesn't make you feel better ... on the basis that you don't feel your dose is currently right.
Most of us need free T4 and free T3 to be 2/3 through range. Do you have results for key nutrients?
Thank you. That’s what I thought (about the 2/3 through range), but I duvet know the difference between being “hyper” and over medicated. Thank you for explaining that. They said I should re-test in 6-8 weeks. I had Iron, B12 & folate tested Feb & they were ok, but folate was low end of normal. May last year vit d3 was also low, and ferritin, so they supplemented iron & told me to supplement vit d. No tests since then - I’m actually thinking of doing private tests to show them. Not sure of when I should time themes for as I’m taking vit d supplement.
If you take how you feel into account ( ie , sweaty and thyroid pain similar to when thyrotoxic ) , as well as TSH , then i think GP's suggestion to reduce dose very slightly is a good one. And it's good that they have only reduced by the smallest amount and not had a knee jerk reaction and put dose back down to 50 as some would have.
I suggest you try it for a couple of months and see how it feels.
{Previous dose 7 x 50 =350 /week
then 7 x 100 = 700/week
now 5x100 +(2x50)=600/week = 86 mcg /day so this is a slightly smaller reduction than reducing dose to 75mcg /day would have been.
Just because your FT4 /3 are not over range does not mean they are not a bit higher than your own personal setpoint . The root cause of all the problems in thyroid treatment is people not understanding how much we all differ in our individual set points of TSH/FT4/FT3 ratios before we were ill, and therefore how individual our numbers will be when trying to find optimal treatment.
As for them making you feel like 'you've learned bits off the internet but you're wrong' ..... better that, with a continued search for facts and a bit of intelligence applied as a filter, than their approach which seems to be to learn nothing further about thyroid treatment whether from the internet, recent research papers, or their patient's experiences.
Thank you for replying. I felt the same about how he reduced it - I assumed he’d say drop it to 50, but didn’t know I could take them the way he’s suggested. I will try this for a couple of months. Thank you so much for the dose breakdown - I hadn’t even thought of how to work that out!! I agree with me at least trying to understand more about my thyroid esp as it all happened very suddenly. Funnily, I had a screening to see if I could join a covid vaccine trial, but the consultant said they weren’t comfortable because I didn’t know what caused the thyrotoxicosis. I don’t think anyone is even thinking of finding that out - but I assume they were concerned that it was autoimmune.
Just so you know your options ~If you wanted to take the same each day (i do) you could do it with 50's and 25's like this; 50 +25 +half a 25 each day= 87.5 mcg (they break easy enough with thumb pressure each side of the line on a hard surface , i just bite mine in half , i got sick of walking to the kitchen for a sharp knife )
watch out for getting Teva brand 25's (some people don't feel well on Teva, some prefer them to other brands) Mercury and Wockhardt also make 25's.
Northstar 25's are actually Teva, while Northstar 50's and 100's are actually Accord.
When changing dose you often get a change of brand at the same time , and some of us can tell the difference in brands of levo , so you want to be sure if you feel different it's the dose change and not the brand change you are noticing.
GP's will say it makes no difference to take different doses on alternate days, but may well 'indulge you' with a prescription for 25's if you ask. And chemists will say 'all brands are the same'..... plenty on here have a different experience. If a large chain of chemists say they can't get you the brand you prefer , an independent chemist may well be more accommodating.
The one big advantage of trying a lower dose for a couple of months is that you will then be sure if overmedication was the problem, which makes it easier to insist on a dose raise if /when you need one. Otherwise, once your TSH is low Gp's will always believe that you are on too much, but if you've tried a lower dose and it made you worse they can't argue with that..... well they can, since they can argue black is white !.... but it helps.
They will both tell you that' you are the only one' who notices a difference with alternate daily dosing or different brands......not true. You MAY be fine with alternate daily dose and different brands , but until you feel well on Levo it's best to cut down on the amount of variables, and i know i'd feel different on the days i only took 50mcg if i was taking 100 the other days, i'm sure my body prefers consistency over everything else....... but don't listen to me , i'm just a woman on the internet...(with 20 years experience of taking Levo)
Oh I am 100% listening to you over the doctors!!! I did wonder about the days I take 50. I don’t think they’ll give me 25s at the moment, so I’ll try this for a couple of weeks & see how I feel. I just feel that I can’t insist, as “they know better”! I could 3/4 a 50 - I have a pill cutter as I have to split my dog’s epilepsy meds.
I heard on here about Teva - mine are Accord, but it’s good to know the other brands are actually Teva too. It’s a minefield when you’re new to this & I feel bad for ppl who just blindly do as their doctor suggests. Mine didn’t even want to put me on thyroxine as TSH was in level - but I pointed out my FT4 was BELOW!
I’ll see how this dose change goes - might get private tests to include Iron, B12 & vit D too.
Don't go believing all that 'they know better' attitude they give off...... i'll bet you 50 quid right here that in the last year you've done more reading and thinking about how thyroid/ hormones work than they ever have ....including their time at medical school.
Just change one thing at a time . only make small changes, and give them long enough to settle down, (and then a bit longer !) before you decide what effect it's had... soon you'll be the expert on 'you'.... then insisting becomes possible.
That’s a great way of looking at it - thank you. I think I’m going to get some stuff printed off to support all of this after I’ve tried this for a few weeks. Thank you again!
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hang in there, we're all in this sh*t together x
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