I was recently on 75mcg T4 and 20mcg of T3 but still felt low energy, dry skin, hair falling out, low mood etc.
Doctor did a TSH and T4 test and then phoned me to reduce my T4 to 50mcg.
My TSH was 0.023 and my T4 was 8.2.
The reduction of T4 meds made me very ill, I crashed 4 days later and I was virtually bedbound for 10 days before I worked out was going on.
I put the dose back up to 75mcg (had to do this myself as I couldn’t get a doctor appointment to brome) and I started to improve straight away but took a few days to get back near whether was before.
Just wondering if anybody has any idea what is going on with me? TSH and T4 low?
Any ideas gratefully received.
I have been thoroughly let down by the NHS with my health and I have an endocrinologist appointment very soon so trying to be prepared.
Thank you.
Written by
MerCorn
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What is the range for your fT3 8.2? They vary across the different labs
Presumably you are under an Endo as you are on T3 so your GP really shouldn't be meddling they only understand TSH at best and knee jerk reduce your T4 when it is likely suppressed due to you taking T3... if anything it sounds like you could do with a little more T4 and possibly a little less T3... do you have any fT3 results?
Edit, having realised you are new we generally like results from an early am fasted test with last dose of T4 24 hours before and last dose of T3 8-12 hours before as these give a clearer picture
I am supposed to be under an endocrinologist but haven’t been able to see her for about 2 years now (phoned and told I was ‘on the list’).
Last time I saw her she accused me of not adhering to her telling me to put my T3 down, which I had.
Any way, I have an appointment with a different endocrinologist on 1 July (the other one has left), so I’m hoping I will get a proper diagnosis and treatment.
The last Free T3 was on 20/6/23 and was 2.6, TSH was 5.3, and free T4 <5.
You don’t seem to have an FT3 result there. Which makes me suspect the doctor was reacting to a low TSH result when they reduced your levothyroxine dosage, instead of considering all the variables and appreciating that taking liothyronine often suppresses TSH. Really really common that they don’t seem to get that, unfortunately.
Your doctor needs to do all the appropriate thyroid function tests, which in your case is FT3, FT4 and TSH.
Taking T3 will almost always significantly lower or suppress TSH
Dose levothyroxine should not be reduced based on low TSH
Many members on levothyroxine plus T3 find they need BOTH Ft4 (Levo) and Ft3 results at least 60-70% through range
What’s range on your Ft4 results
Ft4 looks very low
Obviously absolutely essential to test Ft3 as well
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or T3
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Slow Dragon - is there any data that says T3 lowers or suppresses TSH? Nice guidelines suggest there is not enough evidence to prescribe/ use T3. This makes it hard to argue the need for T3 with the endo. Thanks Sue L
I too suffer the blight of a doctor who only looks at TSH, and ignores FT4 in the bottom of the clinical range.
I take a dose that permits me to function. To produce a test result that assuages professional panic over suppressed TSH (0.017), I skip two days of hormone intake prior to testing. This raises TSH to 1 and the doctor is relieved.
“Your TSH looks perfect.”
🙄
It appears there’s inadequate cognitive capacity to make any correlation between dose and lab results, and the practitioner is only noticing the red numbers (or absence of red) on the computer display.
All this info can be overwhelming to start with! As others have said, get tested before your appointment, or there will be further delay-maybe you can get a weeks postponement for the appointment and get the test done? You get the results via email within a few days, full written report later, Otherwise, order a test, see the Endo and say you will send all the results as soon as you get them for advice on the way forward-this site has taught me to be proactive, and stand your ground as the 'experts' aren't, in most cases and we have to learn to manage our condition ourselves! Good luck!!
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