I’m just wondering if anyone was diagnosed with an under active thyroid after having blood tests that showed thyroid function lower than normal and antibodies were very high and started on levothyroxine and how it’s worked for them?
I was diagnosed with an under active thyroid in 2022. It took a while to get to a therapeutic dose of Levothyroxine and all appeared to be well for a while however, since last September my symptoms have returned and some days much worse than I experienced before treatment started. I’ve had all sorts of tests but everything comes back ok. Including my thyroid levels. Feeling very fed up with it at the minute as I’ve no idea why my symptoms are back or what I can do to help get myself back to some sort of normal.
any advice or insight would be really appreciated.
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WilkiC
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I don’t have my results it’s just what I’ve been told by the GP. I can look into it though. Also been tested for peri and meno but apparently I’m fine there too and haven’t started down that road yet. I’m just at a loss.
I'm guessing the GP has only tested TSH? If you can gain access to your records they should be there to see, if not request a print out from the receptionist.
Being treated on TSH alone isn't going to have the best outcome as they often don't care where in the range you are and you need to be around or below 1, most GP's are pretty hopeless when it comes to fine tuning thyroid hormones I'm afraid
How much do you weigh and what is your current dose and brand?
I have recently been to endocrinology for tests but that was to see if I was peri or menopausal. Still waiting on tests results. My GP has been great and really tried helping me get to the bottom of what is going on. However, I feel not enough information or guidance is out there to manage this condition. Feel like I need to start at the beginning and educate myself better on autoimmune disease and underactive thyroid. I will definitely be getting a copy of my test results too. Thank you
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
thanks for all the info it’s really helpful. I will be requesting my results and have another chat with the GP. I’m currently on 100mg Levothyroxine (accord)
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