I’ve had an under active thyroid for 20+ years all felt pretty good, healthy and physical fit. Last year, GP reduced my thyroxine from 125mg to 100mg - I fought them for a couple of years as I didn’t want to but eventually relented.
in the past 6 months, I’ve felt my fatigue returning, I get dizzy, have migraines and some leg cramps. I’ve also put on about 2kg. I still run and cycle and lifts weights but the exercise is taking its toll far more.
Im taking HRT and testosterone too which have an impact I’m sure. I also take floradix iron and B12 complex as my iron is low without it I also take K2 & D3 which help with my fatigue.
I’m going to ask the GP for a ‘full’ blood test for my thyroid levels but what should I be asking for? They just seem to test TSH around here (North Norfolk) so I’ll need to put a case forward to get them done I imagine.
Thanks in advance for your advice. This seems like an excellent support group
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SandSMS
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You should have had blood test 2-3 months after dose reduction
Did they do that
What were results that prompted dose reduction in first place
NEVER agree to dose reduction based just on TSH
Which brand of levothyroxine are you taking
Do you always get same brand at each prescription
Is your hypothyroidism autoimmune
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 to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum, especially after any dose reduction in Levo
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)
NHS only tests TG antibodies if TPO are high
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)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
VERY important to test TSH, Ft4 and Ft3 together
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
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
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
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
Post discussing how biotin can affect test results
hi SlowDragon, thanks for such a comprehensive answer - it’s a lot to take in.
To answer some of your questions:
I don’t know if I have an autoimmune condition but expect I do as I also have eczema and psoriasis.
I was retested after the dosage change on 2-3 occasions and my TSH was back to normal range. I can’t recall if anything else was checked but was told all was back to normal.
My ferritin levels are within range though at the lower end
I was on the same brand of levothyroxine for many years but this changes from month to month now as I use Pharmacy2U. I haven’t been re-tested since this has happened - what’s the potential impact and are there brands to avoid?
I take my levo first thing in the morning as I find it suits me better and HRT is better taken at night (for me)
I was retested after the dosage change on 2-3 occasions and my TSH was back to normal range. I can’t recall if anything else was checked but was told all was back to normal.
”normal “ is not a result….its an opinion….often an incorrect one
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.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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