Test results - what to do next?

[Jojozo]

Hi everyone, I'm a bit confused by my two latest sets of thyroid results and would really appreciate any help/advice. I am a 46-year-old female. I was diagnosed with an underactive thyroid in my early 20s, and with Hashimoto's around eight years ago.

I was taking 125mg of Levothyroxine, but I was advised that I was overmedicating because my TSH has stayed at 0.01-0.02 since I was put on T3 via a private doctor eight years ago. He said at the time that my T3 levels were 'disastrous'. I then went on and off the T3 according to whether I saw an NHS endo or a private doctor (the private doctors put me on it. The NHS endos insisted it was stopping my thyroid from converting and took me off it), but my TSH always stayed the same.

I dropped my Levothyroxine down to 100mg on the advice of an an endo about six weeks ago , and I had a test done via my GP a few weeks later. All my vitamins were fine, apart from my B12, which always seems to come out high. My basic results are below:

Free T4 level - 16.4 (12-22)

TSH - 0.55

Free T3 - not tested

Ferritin - 35 (13-150)

Folate - >20.0 ug/L (1.9-25)

I did a test last week via Medichecks. I got the results today, and they're very different.

Free T4 - 12.7 (12-22)

TSH - 5.25! (0.27-4.2)

Free T3 - 3.2 (3.1 - 6.8)

Thyroglobulin antibodies - 12.7 (0-115)

Thyroid Peroxidase antibodies - 134 (0-34)

(Unfortunately, they were unable to provide a folate reading due to a sample error, but my B12 was high again).

I'm unsure what to do next. Should I up the Levothyroxine again? (I have put on around a stone in a matter of weeks). Or add in T3 again? (A test has confirmed I am a poor converter, and I do have some, which I sourced myself).

I have been very unwell for the past three years (I also have low adrenal function, leaky gut, gastritis and I am peri-menopausal), to the point where I have now had to stop working temporarily, which isn't ideal when you're self-employed!

I am incredibly up and down. I have weeks where it's a struggle just to walk my dogs, and weeks where I feel like my old self again, but I cannot work out a pattern. Last Monday I felt completely exhausted with brain fog, sinus problems and a terrible headache, and I felt incredibly low and anxious. I slept for 18 hours out of 24 and still had no energy on Tuesday morning. Conversely, last night I only slept for six hours, but I have plenty of energy and I'm nowhere near as anxious. But for all I know, I could wake up tomorrow and not be able to get out of bed again.

I don't drink or smoke and I avoid gluten as much as possible, but I am not 100% gluten free. However, I don't tend to notice any correlation between what I eat and my GI symptoms. I'm so confused!

[tattybogle]

How many weeks after the dose reduction did you do the GP test ? and how many weeks on 100mcg before this latest private test ?

If GP test was not "after 6 weeks on 100mcg" it was done too soon, and that will explain why TSH results are now so different.

[Jojozo in reply to tattybogle]

It was only done a few weeks afterwards. I had some bad symptoms and they wanted to rule them out being down to my thyroid so they did the test too early I guess. But the difference still seems quite shocking is such a short amount of time?

[tattybogle in reply to Jojozo]

if TSH was 0.01/ 0.02 on 125mcg Levo just a few weeks before the 0.55 on 100mcg, then it was still 'on it's way up' ,in response to the reduction, and that response can be quite delayed if TSH has been low for a long while. So the fact that when it woke up properly, it noticed the reduction and carried on climbing up to 5.25, is not that illogical.

Especially when you see how horribly low the fT4 and fT3 are currently.

It looks like there was possibly no need to reduce from 125 mcg , or that 25mcg was too big a reduction.

Did they just do this based on TSH without looking at fT4 ?

Whatever .. if it's now been 6 weeks on 100mcg, then your TSH is clearly saying 'not enough thyroid hormone' and it's backed up by fT4 and fT3 barely crawling into the bottom of the ranges. So you definitely should increase dose of one of them...

Just realised i cant concentrate anymore, and am in danger of talking rubbish, so i'll shut up now xx

[Jojozo in reply to tattybogle]

Thanks so much for your reply, that’s really helpful. Handily I’m booked in to someone next week who can hopefully help me with my results, and suggest the best next step. My GP is absolutely lovely but not very clued up on the thyroid front!