More test results to understand

[Jasper79]

I have now seen an endocrinologist and had another set of tests.

My TSH is not measurable at < 0.02, my FT4 is within range at 20.9 (11-22.7) and my FT3 is 5.9 (3.5 -6.5), much higher than it has ever been before.

My previous results on 15/04 were TSH 0.02, FT4 23.6 (12-22), FT3 4.7 (3.1-6.8).

These were all on 100mcg levo. This has now been reduced to 100/75 on alternate days just a couple of days before the latest test.

My B12 is 533 (211-911) and folate 11.5 (> 5.4).

He also requested a huge range of other blood tests all of which were ok although Cortisol and Testosterone were slightly raised which, he suggested, indicated slightly too high levo dosage..

As previously noted, I have had no identified symptoms, although since being diagnosed in 2019, my LDL cholesterol has risen from 3.1 to 4 in the first year and then stabilised and I have developed chronic peripheral neuropathy (confirmed with NCS and EMG tests). My endocrinologist thinks this is much too severe to be caused by hypothyroidism.

I have an appointment to see a neurologist but they seem to be rarer than hen’s teeth. It is not for another 5 weeks (7 when booked and that is private of course). An earlier NHS referral fell by the wayside.

As always I would be grateful for any observations. I find the relationship between my different thyroid measures to be inconsistent.

[GlowCoach Administrator]

Are you testing consistenty under the same conditions?

Always test at 9am or earlier for highest TSH, leave 24hrs from last dose of levo, fasting & no biotin containing supplements for 4-7 days before the test.

Even just testing at a different time of day will alter results.

The B12 result you have is a serum B12 and not as good an indicator as an active B12 test. Have you ever had an active B12 test? Some areas of the NHS can test it but otherwise a private test is needed.

See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

What are your other vitamin results - ferritin, folate & D3?

What are you supplementing with?

Free T4 (fT4) 20.9 pmol/L (11 - 22.7) 84.6%

Free T3 (fT3) 5.9 pmol/L (3.5 - 6.5) 80.0%

It looks like you are converting well and possibly even need a very slight reduction in Levo.

[Jasper79 in reply to GlowCoach]

Thanks for the response. Following supplementation based on the advice received earlier on this forum my vitamin results etc. are all pretty good as reported in an earlier post in April.

What was suprising me was that previously my FT3 had been coming in at around 45% of the range since moving up to 100mcg levo, but suddenly it has gone up to 80% while the TSH and FT4 have been broadly consistent i.e. TSH out of range low and FT4 near or over top of range.

It will be interesting to see the next test results in a few months time.

However, as far as I can tell, I have received no benefit from 5 years of treatment. It is hard to say it has made me worse, but certainly my neuropathy started around the same time. It is severe.

[GlowCoach Administrator in reply to Jasper79]

Have you tried any dietary changes? They can make all the difference.

You could trial a strctly gluten free diet and then possibly try removing dairy from your diet.

For folate you should be aimning for a level of 20. What are you taking for folate? Could buy a separate 400mcg methlfolate.

[Jasper79 in reply to GlowCoach]

Yes, I have been gluten free for 4 months now.

Re folate my methyl B complex includes 250mcg methyl folate. Last BH test had serum folate 17.1(8.83-60.8).

[AKatieD]

Results look fine on higher dose and, if you are feeling ok, I would have left the dose alone.

In my experience, neurology seems to be where the g.p. sends you when they don't understand thyroid problems. My g.p.sent me for tingling hands and feet which are classic hypothyroid signs, but he ignored as was sure I was perfectly treated with T4, when I wasn't. Bit of a waste of time, but did not mind somebody checking, just in case.