My mum has had an underactive thyroid for years...alongside type 1 diabetes. She was told she wasn't having enough levothyroxine, so the doctor wanted her to put it up to 100, but she asked to go on 75, as she felt 100 would be too much. The doctor agreed. She had a blood test on the 7th December and had a message to make a routine appt with the gp. This is for about the 19th of January. Anyway, we don't understand the results.
Her TSH level is 5.16mu/l
It was 0.797 in October
Her serum free t4 level is 24.2pmo/l
So one suggests underactive thyroid, the other suggests overactive!
If anyone is more clued up on what the results mean, could they possibly explain?
It's confusing!
Thanks
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BFlying
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Did she take 75mcg consistently & unchanged at least 6 weeks before testing?
Usually high FT4 & FT3 will cause the TSH to be low. Low FT4 & FT3 will cause high TSH. but the TSH doesn’t always accurately reflect what the FT4 & FT3 are “doing” & what if they are FT4:FT3 are unbalanced one very low & the other high? TSH doesn’t tell you where your FT4 & FT3 are. You need all 3 tested.
Add lab ranges to results, ranges vary between labs. 24.2 is above most range for FT4. but high FT4 can occur if tested within a few hours of taking dose & it doesn’t tell you if FT3 is right.
Recommended tests are taken early as possible to 09.00, fast overnight, delay dose until after draw. Remove supplements containing biotin 3 days before draw. Was this how the test was arranged?
Also important to test folate, ferritin, B12 & vitamin D. Have these been tested?
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation she needs 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
As type one diabetes is autoimmune it’s virtually certain her hypothyroidism will also be autoimmune
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
When were vitamin levels last tested
What vitamin supplements is she taking
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)
Is this how she did the test
If she took levothyroxine before test this will give false high Ft4 result
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
hi, I have hashimotos and half of my thyroid left. My blood test results can go up and down like a yoyo. I believe (for myself anyway, everyone is different) that my levels go up and down however much medication I’m taking.
I tend to go on how I’m feeling.. I’m currently alternating between 75mg one day and 100mg the next. I can sometimes feel ‘shakey’ and over anxious and at other times feel I need a bit more because I’m tired and sluggish. It definitely seems to be up and down with me, and occasionally stable. But that might just be me..!😂
That's interesting what you say, as my mum has been battling anxiety. She's having more good days than bad (touch wood!) But nevertheless it's not like her. When she was on 100, they said they're giving her slightly too much. Now on 75, it's not enough. I think 25mcg is such a big jump
She could try 87.5mcg, ie 12.5mcg increase/ decrease. As you say 25mcg either way is too much for some. I've even heard of some members who only change their dose by 6.25mcg at a time as they are very sensitive to dose changes. Suggest your mum invests in a good pill cutter. Or alternate day dosing of 100/75mcg.
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