1st endo appt this Thursday - advise pls

Hi All,

Finally managed to convince the GP to let me try an endo appt at the local hospital as she says my bloods are fine but I'm still very symptomatic of hypo levels.

I was diagnosed in 2010/11 after the birth of my daughter and have been on Levo ever since. Was at my best mid 2012 but haven't felt right for couple of yrs now and no ones been listening. They even lowered my meds from 175 to 150 last year as they said I was going hyper.

Really want the endo appt not to be wasted so managed to get some copies of latest results from Oct and couple before that plus some notes from mid 2012.

I appreciate any thoughts as I'm not really sure what I'm looking at. They are in the ranges but having been a member on here for a while I know this can vary a lot.

Thanks for your time.

Oct 2016 =

Free T4 12.8 (range 7 - 16)

TSH 1.27 (range 0.38 - 5.33)

Jul 2016 =

Had general test too inc glucose, iron etc and all was ok apparently but thyroid was:

Free T4 16 (7 - 16)

Free T3 6.4 (3.8 - 6)

TSH 0.13 (0.2 - 5.5)

This was when they reduced me from 175mcg to 150mcg

Jan 2016 =

Vit d checked and ok at 53.3

Free T4 19.3 (7 - 16)

TSH 0.34 (0.2 - 5.5)

Jul 2012 =

Free T4 15.6 (7 - 16)

TSH 0.71 (0.2 - 5.5)

and this says result 3 of thyroid function test is 442J. Don't know what this is. This result has notes saying 'suggests adequate thyroxine replacement' but unfortunately they couldn't give me any other info from that time as it's too long ago. I know I was on 175mcg when I fell pregnant again at the end of 2012.

Thanks again.

4 Replies

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  • It looks to me they reduced your dose because your FT3 was 'just' over range. It wasn't sufficient to lower your dose but they did.

    Ask for an increase and say you understand, as you've asked NHS Choices for information on hypothyroidism as to why you feel worse since they reduced your dose of thyroid hormones.

    You have clinical symptoms since they reduced your dose and you can also say your child hasn't had the healthiest mother he should have had and you've had bad symptoms since. Your TSH at 1.27 is still high and we feel best (usually) when its below 1 or suppressed.

    Say you are now going into your sixth year of being hypothyroid and you know you should have had relief of all clinical symptoms by now.

    Remember blood tests have to be at the very earliest and fasting. Also leave 24 hours between your last dose of levo and the test. If they say a suppressed or low TSH is dangerous ask why thyroid cancer patients are given suppressed doses and don't seem to be harmed.

  • 442J. seems to be a form of Readcode - just a code for thyroid function test. No use other than for management and statistics.

    doctor.am/glossary/index-sn...

    Do you defer your levothyroxine before having a blood test? If oyu don't the blood test results can reflect what you have recently swallowed rather than the mean over time.

  • Hi, thx for the replys. I'm trying to get into a mindset for tomorrow of not taking any brush off but it's hard as I'm very achey today from being cold all day so tensing my muscles :( so am exhausted. Am x-ing fingers for a reasonable nights sleep so am not having a muggy head day.

    I take my levo at night as I found back in the beginning this made me feel better, so when I have a blood test I don't take it the night before. I did fast on the last one as I read it on here but hadn't done before.

    I'm trying to keep expectations low for tomo but can't help being a bit hopeful,

    Thanks again

  • Well it didn't go to badly, she's seeing me again after a fresh blood test and thyroid scan. She said my TSH was to high and that my meds should never have been lowered. She also asked me about my hair which has been getting thinner all the time.

    It was nice to not feel like it's all in my head, I'm not going mad yippee.

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