When did she take her last dose of Levo before the test? Last dose should be 24 hours before the blood draw, taken too close to blood draw gives false high FT4 and any longer than 24 hours gives false low FT4.
Does she take Biotin, a B Complex or any supplement containing biotin? If so did she leave it off for 3-7 days before the test?
How does she feel?
Why do you think her Levo will be reduced, do you share her private test results with her doctors or do they dismiss them?
If she needs a slightly over range FT4 to achieve a reasonable FT3 level then so be it, and here is the evidence that says this is fine:
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 confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article by emailing ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
I would argue that her FT4 is only 1 point above range and that as her FT3 is well within range there is no problem and she is not overmedicated.
She tested negative for PA (August 2020), but diagnosed B12 Deficiency in March 2020. 5 loading doses were given before 1st lockdown, further injections were refused as numbers were fine when tested again in August 2020. As a lot of symptoms had improved she decided to SI every other day until symptoms no longer improved and 30 years of psychosis, depression and anxiety cleared after around 6 weeks. She’s continuing to work out how often she needs to SI to keep mental illness at bay. We discovered through research the B12 deficiency could have be caused by under medication of Levo/hypothyroidism, as she had been on 25mcg since 2018 and numbers kept at the border of Top of Range. Although hypothyroidism originally found in 2004 and she was stuck on 25mcg then too, stopped in 2011 (wasn’t told to stay on it) then back on it 2018, all symptoms have since been blamed on mental health problems and improvements blamed on placebo effect.
Vitamin D never tested but once pandemic began we take 100mcg of Vit D3, 1000mg timed release Vit C.
Last 6mths she added 400mcg folic acid, as folate was 13ug/L (3.9-26.80) April of this year. B12 was over 2000 the same month but back then she was SI every other day.
Antibodies for thyroid tested via medichecks April 2021 (never done before)
Thyroglobulin- 10.600 (<115)
Thyroid Peroxide- 13.00 (<34)
She was taking 375mcg magnesium (at night) to try and relieve her lifelong constipation but didn’t stop it until 24hours before blood tests, not sure if this could have affected results?
Not on gluten free diet, not been tested for gluten intolerance either.
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7 - One spray = 1000iu
Sorry, magnesium citrate, Holland and Barrett powder as couldn’t easily get Calm Vitality at the time.
She did try B12 tablets during the first lock down as advised, but didn’t feel any benefit. Would it be safe for her to continue SI and take a B-complex tablet.
Currently gets Mercury Pharma, trying to keep it that way.
75mcg is current dose.
Thank you for all the info and links I shall try and have a further read.
As she self injects B12 it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Many thanks for the recommendations. She’s on Mercury Pharma and thanks to posts from others she’s trying to keep it that way.
We’re a bit concerned the Doctors will refuse to continue on her current dosage as she’s been struggling for years to be listened to, like I said before everything has been blamed on mental illness before and we only got these current increases thanks to the info from this forum, charity websites and a visit to a private Endo.
I will take Seaside Susies information as well in the hope doctors will take it on board as well as your recommendation of retest in 12 weeks.
Do you think the magnesium citrate, my wife had been taking, could have made the results jump so much?
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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