After seeing the endocrinology nurse and subsequent instruction to reduce my dose from 100mcg to 75mcg due to very low TSH (which has been below 1 for years) the symptoms returned after 6 weeks... with avengeance!
Headaches at 5am every morning, extreme fatigue and generally feeling ill.
I had the TFTs repeated on Monday (week 8) and promptly increased back.
Got the results from GP this morning all all wonderful!
T3 5.4. T4 11 and TSH 0.98 (not been that high for a long time.
My thyroid scan was normal apart from
“Sub centimetre U2 nodules on both lobes”
I go back to see the endocrinologist (doctor this time) on the 14th
I am at a loss! I felt so much better on the 100mcg dose but the blood results didn’t agree!
Apparently I risk osteoporosis and/or atrial fibrillation if I go back up to 100mcg.
Any advice please?
I did have the test done first thing in the morning before food/drink and thyroxine but last time I didn’t because it was an unexpected test later in the day
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Countrylou
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Simple... they don't understand how thyroid hormone levels affect an individual, regardless of the numbers! That said, if your TSH is sepressed and FT4 above the range, it's just possible your sleep and feet problems might improve if you had a tiny decrease in levo dose. Too much thyroid hormone can cause symptoms too. Getting your FT3 tested might shed some further light on that though.
How low was your TSH? To be honest they should not be going by your TSH because that is a pituitary hormone not a thyroid hormone. They should looking at your T4 and T3 and checking that your vitamin levels are high enough which are B12, Iron and Ferritin, B12, Vitamin D and folate they all need to be at a good level because people with thyroid disease have problems absorbing vitamins from their food and nearly always need supplements. Also 75mcg is a very low dose and should be higher for example my Dad who is 78 and classed as elderly takes 100mcg and feels ok but younger people need a higher dose to feel well.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Do you have Hashimoto's?
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
I disagree because I know people in the UK and the US who have had a suppressed TSH for many years and are very well. The TSH is pituitary hormone not a thyroid hormone.
Maybe... but as with all research I’m not sure they’ve considered all the variables.
For example, could the tendency to bone fractures actually be linked to years of being undiagnosed with hypothyroidism or being kept on too low a dose for a period of time? Or could the results be muddied by people having undiagnosed pituitary failure?
We know that hypothyroid patients experience difficulties with absorbing key nutrients, for example, Vit D, magnesium, B12 etc. So couldn’t it actually be that being hypothyroid for a long period (which you could easily be even with a low or suppressed TSH) is the thing that really predicts tendency to bone fractures rather than the TSH?
It’s an interesting topic nonetheless and I’m certainly not saying the researcher’s conclusions are wrong—I’ve also read that non-suppressed TSH levels may be crucial to the conversion of T4 to T3, so there are definitely things about the role of TSH we’re yet to fully understand.
There are many factors that affect osteoporosis and atrial fibrillation. The study I cited finds that a TSH below 0.04 is associated with increased risks. It also finds that a mildy elevated TSH has risks, something endocrinologists always ignore.
TSH is just one parameter and can be useful as a marker for overall thyroid status, but not in every case. TSH plays a role in bone formation, bone has TSH receptors. Little is known about this. I suspect it is a minor factor as people on levothyroxine with a suppressed TSH don't seem to be at increased risk of bone fractures. (Bear in mind that patients with hyperthyroidism often have parathyroid problems that confounded the older studies).
TSH certainly has a role in T4 to T3 conversion, a point I hammer home in my website under the 'Subnormal TSH Secretion' topic. I try to use the term 'low TSH' rather than 'suppressed TSH' if there is doubt as to whether TSH is low due to high hormone levels. Many patients have a low TSH because of subnormal secretion rather than supression by too much hormone.
I referenced the study to point out that TSH has to be very low before it is associated with increased risks.
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That said, if your TSH is sepressed and FT4 above the range, it's just possible your sleep and feet problems might improve if you had a tiny decrease in levo dose. Too much thyroid hormone can cause symptoms too. Getting your FT3 tested might shed some further light on that though.
Thyroid blood results and dose 
Doubling of thyroxine dose - is this wise?
Thyroxine dose chsnge
Should I accept GP advice for dose reduction?
