New to this

New to this

Hi, diagnosed with hypothyroidism in May and put on Levo 50mg. No real improvement yet, new blood test booked for 14th Aug. GP not very interested in anything apart from the Levo and feel frustrated as there's obviously so much more to this! Would be grateful for any comments re my results. I appreciate that they are not the full picture but the only thing my GP would offer. She has agreed to test for celiac next time. My main problem is weight gain and feeling weak, tired and down. Very new to this so struggling to understand the test results, any help appreciated!

12 Replies

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  • Your TSH was out of range in May and your FT4 levels at bottom of range. This proves that you are hypothyroid (even if doctors prefer to call it subclinical hypothyroidism if any of the lab results is still in range...).

    50 mcg of T4 is a starting dose which you should not stay on for more than about six weeks. You should then raise it by 25 mcg and be retested every 4-6 weeks until your FT4 levels are close to the upper normal range and your TSH levels around 1 or slightly lower, along with complete symptom relief. You need optimal T4 levels in order to ensure that enough T4 is converted to T3, the truly active thyroid hormone. Most doctors won't test FT3, but this can be done privately. UK members will have more info on that.

    One good thing is that your doctor agreed to prescribe thyroxine; from other posts here, it seems many doctors in the UK won't treat until TSH is above 10...?

  • your FT4 levels just above range

    FT4 levels were just above the bottom of the range, not just above the range. :)

  • Thanks for spotting this, I've corrected it:-)

  • It's a long time to wait for retesting and increase in Levothyroxine to the 75mcg dose, don't you think?

    I have read on here and seen guidelines that this is done 6 to 8 weeks after diagnosis. But have also seen guidelines that it is done after 3 to 4 weeks later.

    At least you were started on the 50mcg dose and not the 25mcg (waste of time in my opinion) dose.

    Ask your GP for nutrient levels to be tested also especially :

    VitaminD

    B12

    Folate and

    Ferritin

    You will most likely be deficient in some of these.

    I can't see all your results fully as can't enlarge. But TSH is 5 or more? This is too high and needs to be down below 2 in Hypothyroid patients. Pity your GP didn't retest and increase dose after 6 weeks.

    You could write a full list of your symptoms to show GP. Also you could ask for Thyroid Antibodies to be tested as well.

    All the best.

    X🐥

  • Thank you Mary, all valid points. The TSH is 5.4. I agree that re-test should've been done earlier, I had to push for this to happen by attending completely pointless appointment, but hey got there in the end. I'm now looking forward to seeing what the new results will show!

  • If you are struggling with these symptoms - why wait till 14th?

    Could you get an earlier blood test appointment?

    The comments after TSH result read . . . . If clinically Euthyroid then retest in 3 to 6 months. You have Hypothyroid symptoms?? So why wait??

    As well as noting that your FreeT4 was JUST in range, very low, I also see that GP did not test FreeT3. Our health authority only tests TSH now for patients already on Levothyroxine. In your case , however, you were never tested for FreeT3. So I would definitely ask for that to be done asap along with Thyroid Antibodies and nutrients as mentioned above .

    Before seeing GP check out all the nutrient deficiencies symptoms on NHS choices and compare with yours.

    I hope that in the next month or two, after some time on 75mcg, and any nutrients you are found to be deficient in, you will begin to feel much better.

    X🐥

  • I'll try but getting an appointment at all was challenging so might have to wait. Don't understand why they don't check everything in the first place, would make so much more sense! I'll see what the nurse says when I have the test, hopefully I can get the other values included, if not I'll get a private one done. Thx 😀

  • I was, eventually, diagnosed in 2011. I only found out about asking for the nutrients tests on here when I joined in March by reading replies to posts. I asked a GP (who is fairly new to the practice) for the Vitamin D etc tests in April. Just said I'd learned we could be deficient because of absorption issues and as I'd never been tested for them could I have them. She was OK about. Said Yes.

    X🐥

  • The thing is - GPs don't specialise in the Endocrine system. We have Endocrinologists. But there are so many of us that GPs are treating rather than refering. That wouldn't be so bad if they looked up the NICE guidelines first. Then they would know when to refer or ask Endocrinologist advice before treating. And in any case would not make you wait 3 months for retesting and dose increase.

    Having said that neither my GP nor my Endo did the nutrients tests nor even the Gastroenterologist nor Colorectal Consultant. I had to ask for them from GP this year.

    Be careful about doing private tests as I heard of some GPs refuse to acknowledge them and even get angry about them! As you say pity they don't do them all in the first place!

    Hope you get all the bloods done ok.

    X🐥

  • It's important to have our blood tests done first thing AM, fast beforehand (water OK) and stop Levo 24 hours beforehand - this gives the most accurate results in testing.

    Many in the forum end up with private lab testing in order to get the bigger picture NHS labs just don't seem to give (TPO antibodies, free T3, as well as ferritin, folate, B12, Vit D - already all mentioned).

    Just go to the Thyroid UK site and click on "private testing" to give you results there.

  • Thank you, have a 9am appointment so that works! Asked at the surgery re fasting and they said no need to...thought that was weird, common sense really that you should.

  • In my experience don't even bother telling them these things - they will roll their eyes or tell you there's no need. We know that is what is necessary and that's what is important.

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