I have calculated the percentage increase and decrease of these results.
TSH percentage increase of 1100%
T4 percentage decrease of 18.2796%
I'm pretty sure they're going to decrease my Levothyroxine, probably to 75mcg and I'm terrified I'm going to feel wiped out all the time and it'll definitely negatively impact my mental health which is really bad at the moment.
Any advice on what to say to doctor would be appreciated as I feel like refusing to decrease my levo dosage but might find myself having to pay for them and I simply can't afford that.
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sobs1962
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You don't need to work out percentage of TSH, you just look at the result and you can see where it lies within it's range (or outside of range). TSH is not important once on thyroid hormone replacement as it's a pituitary hormone. It's useful for diagnosis but doesn't have much use once medicated, it's the FT4 and FT3 that tell us what we need to know, it's just a shame that doctors don't know this.
I'm pretty sure they're going to decrease my Levothyroxine, probably to 75mcg and I'm terrified I'm going to feel wiped out all the time and it'll definitely negatively impact my mental health which is really bad at the moment.
Then you politely point out that your FT4 is well within range and doesn't suggest overmedication.
Use the following information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
So if GP still insists on reducing your dose of Levo, then politely refuse unless a new test including both FT4 and FT3 is carried out to see if FT3 is over range (which is very unlikely when your FT4 is in range).
Presumably you didn't take your Levo before this test and left the 24 hours since last dose as we advise? Also, I assume you didn't take any Biotin or B Complex supplement in the 7 days before the test or drink coffee or have anything to eat before the test?
Thanks for reply. I stopped taking b complex 2 weeks before test and also selenium which I was taking to try to improve conversion. I took my last dose of levo on Saturday and blood test was on Monday. Doctors are completely obsessed with TSH levels and they're doing us poor thyroid patients more harm than good and this shows extremely poor knowledge of thyroid disease. I just get overwhelmed very easily by all this due to my BPD and I feel like they doing it deliberately to make me feel worse, because if they keep you sick, they can prescribe all sorts of other drugs, which they get paid by Big Pharma to prescribe. So I have no faith in the NHS as it's failing in general and apparently not training it's doctors adequately. Will email to get a copy of that article by Dr Toft and will feel more armed to deal with the doctor, when I get an appointment that is, been told to ring back on Friday and might get one next week if I'm lucky.
I took my last dose of levo on Saturday and blood test was on Monday.
Well that changes my comments about your FT4 level.
Why would you take last dose of Levo on Saturday when blood test was on Monday, we always advise here, many times on a daily basis, that last dose of Levo should be 24 hours before blood test. Depending on the time you took your last dose and the time of your test then it could be anything up to about 48 hours. This is how you should do your tet:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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.
Taking that into account your FT4 is showing a false low level and if tested with the correct time gap we can only guesstimate that your FT4 level may be really close to the top of the range. You really need to retest under the proper circumstances, and including FT3 test, before making any decision about whether dose needs changing. If necessary tell the GP that you hadn't taken your Levo for a two days so you believe your results may not be accurate.
I wanted the TSH to be higher and T4 slightly lower so they wouldn't reduce my dose as still having hypo symptoms and if they thought I was showing as slightly hyper they would panic and potentially drastically reduce my dosage and that's why I left my dose out on Sunday and I find it hard to believe that missing one dose would make much difference as it's the first time I've missed it in over 12 months, surely there is enough in your system to not make much difference. It might seem like I'm being stupid, but my BPD sometimes makes me convinced that I'm right and everyone else is wrong, especially doctors as having read lots of posts on here, it would appear that most doctors including endocrinologists have woefully poor knowledge of thyroid disease and I refuse to be dictated to by ignorant doctors, it's my body and I am in charge of it no-one else.
I took my last dose of levo on Saturday and blood test was on Monday.
Why didn't u take any on sunday ?
If test was much over 24hrs from last dose, then fT4 will probably be 'false' low. Also TSH may rise a little compared to it's usual.
But whatever .. just point out that T4 is lower and TSH higher than last test, so you'd like to stay on same dose for anther 3/6 months to see what TSH/fT4 is then, results do often change over time, even on same dose.. GP may find it easier to allow a 'trial' of continuing on same dose , rather than thinking they are granting permission for TSH to be below range indefinitely (since the risks associated with low TSH are long term things).. then just see how it goes.. you never know . next test TSH may have just scraped into range anyway and they'll shut up about it for a while.
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