Had thyroidectomy 12 years ago minimally invasive follicular thyroid cancer had RAIA TSH suppressed for 11years
Last year reduced thyroxine to 100 mcg and 75mcg on alternative days discharged to doctors
February blood test showed my TSH was 10 in October it went to 15.54 finally got an appointment with endo in December put thyroxine up to 125 daily my legs have improved brain fog a little better see endo in March for another blood test I am 74 fit why is my TSH so high
welcome to the forum
finally got an appointment with endo in December put thyroxine up to 125 daily
So you need FULL thyroid and vitamin testing 2-3 months after any dose change or brand change in Levo
Approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
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Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
You might need a little less because of your age
But obviously dose was reduced too much
what were results when on 100mcg daily BEFORE dose was reduced
TSH should always be below 2 on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
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Comprehensive list of references for needing LOW TSH on levothyroxine
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onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
sciencedirect.com/science/a...
The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
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No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Are you taking any other medications?
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Always take my thyroxine on waking leave 45 minutes before taking other meds .When I have a blood test I don’t take any tablets for 24 hours and only have water x
What other medications
45mins is likely too soon after levothyroxine
Minimum 2 hours
Some need 4 hours gap
I am onEzetimibe 10mg Amlodipine 5 mg and Irbesartan 150mg
High cholesterol is linked to being hypo and not on high enough dose levothyroxine
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Similarly improving thyroid levels should improve BP
It was high because your FT4 was obviously low, which is why your endo increased your levo. And if your FT4 is low, your FT3 is going to be even lower, and that has more effect on TSH than the FT4.
TSH is a pituitary hormone. When the pituitary senses there's not enough thyroid hormone - T4 and T3 - in the blood, it increases production of TSH to stimulate the thyroid to produce more thyroid hormone. The pituitary doesn't know you're on thyroid hormone replacement, and it doesn't know how you feel, so it continues to increase TSH when T4 and T3 are too low. Your pituitary obviously wasn't happy with the amount of these hormones in your blood. 
Suggest you get FULL thyroid and vitamin testing done BEFORE next consultation
Request GP test vitamin D, folate, ferritin and B12 now
Then retest thyroid and vitamin levels 2 weeks before consultation with endo
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Just TSH, Ft4 and Ft3 test - £32
monitormyhealth.org.uk/thyr...
10% off code here
thyroiduk.org/testing/priva...
Randox FULL thyroid test including both thyroid antibodies just £31
Test at home or in clinic
Also available via Amazon
randoxhealth.com/en-GB/at-h...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
With follicular cancer your TSH needs to be very low and suppressed. That’s to stop any cancer returning. Your endocrinologist should know this and your gp. I’d speak to them about this and ensure you’re on enough medication to bring down our TSH to being suppressed. Check your vitamins D, B12, folate and ferritin also. Check your cholesterol isn’t high too.
Hello Aleeah and welcome to the forum :
Without a thyroid it is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and ranges and not a TSH reading - especially if seen in isolation.
The TSH reading relies on the body's internal HPT axis working well - but without a thyroid - this Hypothalamus - Pituitary- Thyroid - feedback loop has been down regulated as you have no thyroid in situ to complete this circuit loop.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -
with T3 the active hormone that runs the body which is said to be around 4 x more powerful than T4.
Levothyroxine - T4 - is a pro-hormone and needs to be converted in your body into T3 which is the active hormone that runs the body, much like fuel runs a car, with the thyroid acting like the gear box, synchronising all your bodily functions from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
To enable T4 to be converted well in your body into T3 we do need to maintain optimal levels of ferritin, folate, B12 and vitamin D - so suggest you ask for these core strength vitamins and minerals to be run and we can advise where best your levels need to sit -
as just being in an NHS range somewhere, anywhere, is not conducive to optimal, best health.
Clearly reducing your dose of T4 after years of having kept the TSH suppressed has caused these high readings - and your whole equilibrium changed.
Clearly reducing your T4 has also reduced your level of T3 and it is too low a T3 for you that causes all the symptoms of hypothyroidism which you then started to experience.
Were any blood tests run before you saw. or when at the endo appointment - and did these include a T3 and T4 blood test results and ranges - and if so, can you share these with forum members if you have them -
as there is little point running a new blood test until you have been on this increased dose for around 8 weeks -
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 75% through its range - and at around a 1/4 ratio T3/T4.
TSH still too high? 
Differing TSH results
tsh high
