Update on me

Well I posted here some weeks back and ordered some blood tests which were all in range:

TSH 3.17 (0.27-4.20)

Free T4 14.92 (12-22)

Free T3 5.16 (3.1-6.8)

Had another for antibodies which were present but under the range.

For quite a while I've felt dreadful. So tired, ice cold, dry hair and breaking nails, put weight on for no reason, brain fog, memory problems, sore throat, problems swallowing and feeling like pressure on the bottom of my throat.

Armed with the great advice from here I managed to get my GP to take me serious enough to prescrive Levo and refer me to an Endo. My appointment letter came today and my appointment is end of April.

I've been on 25mg for 2 weeks and now started on 50mg.

For the past week my hands have been steadily feeling warm! It's lovely not to have ice cold hands all the time, although it wears off as the day goes on. Does this mean it's working?

I was wearing gloves in the house and 4 layers all day. Still wearing the layers and the thermal socks as my feet are so cold.

I still feel nauseaous and tired but more hopeful.

I know Drs probably don't take it seriously but I've been taking my temp first thing when I wake up and it's still 35.2-35.6 (never get's higher than that)

I'm a bit worried about the Endo as I can't find anything out about him on the net and I'm worrying that if the Levo is working (or starting to!) he might take me off it because my results are in range.

I know nobody on here can help with that but there is nobody else I can discuss it with who would understand.

6 Replies

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  • skyrocket My first thought, when you said that you have been started on Levo, was that if you see an endo he might disagree and instruct your GP to stop prescribing.

    Do you have another blood test booked, 6-8 weeks from your dose increase? You should have, and if your results are improving it might be an idea to stroke your GP's ego and tell him he seems to be managing your Hypothyroidism well and there would appear to enough need to take up an appointment with an endocrinologist which could benefit someone else.

    Don't forget when re-testing that you should book the first appointment of the morning, fast overnight and leave off Levo for 24 hours which gives the highest possible TSH which is what you need when looking for an increase in dose or to avoid a reduction.

    It sounds as though the Levo is helping, and you should be aiming for TSH to be in the lower part of it's range and FT4 and FT3 to be in the upper part of their ranges, if that is where you feel well.

    You could always ask on the forum for feedback on the endo, which will have to be by private message, but bear in mind you may see someone in 'the team' rather than the named endo.

  • HI SeasideSusie! Yes I have a blood test I'm supposed to have next week and then in another 2 weeks. I think the GP wanted a scan of my thyroid but she said for that to happen I'd need an Endo.

    I'm worried now because if this is starting to help even at this dose I don't want them to stop my treatment.

    I did post earlier with the name of the Endo but nobody has pmed me so I guess no-one here knows him

  • If you need a scan then I suppose you need to see the endo.

    You can email louise.roberts@thyroiduk.org.uk for the list of thyroid friendly endos and see if your endo is on there, or maybe see if you can change to one of those on the list.

    Your GP seems to be testing am awful lot. It's normal to re-test 6-8 weeks after starting Levo, and 6-8 weeks after a dose increase until you are stable, then it tends to be annually if you remain stable.

  • My results are similar to yours and declared "all in range", although neither T3 nor antibodies were tested (by a Consultant Endo). How did you manage to persuade your GP to prescribe medication?

  • My GP tests were done lunchtime after eating so my TSH was much lower but T4 was low too (still in range though) so i had a BH test first thing to see. Then i presented my 'case' to the GP and told them all the horrendous symptoms i have and how if i was in any other country they'd be treating me now.

  • My blood tests are in normal range, but useless as I have secondary hypothyroidism.

    I banged my head against endocrinology clinic walls for a few years, then did the Barnes basal body temperature test for 4 months. I found it never went above 35.3, but was usually 35.1.

    I have been self-medicating with NDT &/or T3 for 18 months. My temperature is up a full degree, & I can now produce body heat & eat normally!!!

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