Help! Which medication to take and how much

Hi thereNew to this forum :)

I was wondering if you could advice me. I'm 40 nearly 41 and was diagnosed with under active thyroid 3 half years ago, 6 months after my daughter was born . I went up to 100 of thyroxin and still didn't feel well, tired and depressed , I was then given Prozac for depression and referred to endocrine for tiredness. He dropped my thyroxine down to 50 and gave me 10 of T3. I quickly went hypo again and gradually up to 100 thyroxine and the t3, neurology gave me Nortriptyline for eye pain. I'm now on 125 thyroxine and no t3 ( felt wasn't working) latest bloods show I'm border hyper. I sweat at night I'm tired and lack energy . Do you have any advice for me.? Doctor has left me as I am to retest in 3 months, as only borderline , any help appreciated.

Thank you in advance

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32 Replies

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  • Do you have any bloodtest results with ranges you could share ? Also did you have the anti-bodies tested ? Maybe you have Hashimotos which can enable you to swing from Hyper to Hypo.

    These are the CORRECT tests you need :- TSH - FT4 - FT3 - Anti-TPO - Anti-Tg

    Also FERRITIN - FOLATE - B12 - VitD

    Low vitamins and minerals can be the cause of low mood - especially low B12. SSRI's - umm not sure they are helpful when you have a thyroid problem. Treating the thyroid optimally can solve most issues connected to low mood. Have you found the website/book of Kelly Brogan ? Well worth a read.

    You are entitled to have copies of your test results from your GP - it is your legal right.

    Keep reading and posting on this forum and you will be well in no time :-)

  • Wondering what the doctor thinks is 'borderline' if they're treating you w 125mcg levo - ? Borderline hyper? I agree w Marz, test results would help pull the threads apart.

    Like you, my levels have been going up and down for ages. It can make you feel awful.

    If you're feeling a bit hyper right now, no reason why you couldn't reduce your meds by a little every other day, eg try taking 100 alternating w 125. It is only a tiny change but it might take the edge off without sending you back into hypo city.

  • Ok here goes...

    TSH 5.88 Ft410.7 30/12/15

    TSH 2.87 FT411.8 ft3 4.5 19/02/16

    Tsh 0.27 a 4.2

    Ft4 12-22

    Ft3 3.1 6.8

    Can you you explain the result from the anti thyroid?

    Then in June this year my Tsh was in middle of normal range and endocrinology said he'd like my Ft4 to be nearer 18. So my dose increased to 125, my last result for ft4 was 16.5

    The neurology asked for anti thyroid peroxidase , he wrote to my dr with this..."..anti thyroid indicated borderline high result 59.79 IU/ml T.R 0-34, she is diagnosed with hyperthyroidism and her Tsh from June was low, this points to need to adjust"

    Not sure what that all means, saw dr she said keep on 125, I've taken myself off t3 leothyronine as it made my drowsy AM and I felt no better, but with all other medications I'm on I really don't know how I am :(

    Went for MRI scan on Monday from eye pain , I've been worried it's all sorts of things, low mood, dizzy upon standing, tired all the time, sore eyes and night sweets.

    Thank you for your help, quite desperate now to feel well. Any thoughts?

    I will look at the book thank u..

  • Have you got the ranges? Otherwise it's guesswork. Though it seems obvious your tsh is too high and you're undertreated. And there is presumably an error - your dx is hypOthyroidism, not hypER, yes?

    You may be feeling hyper, there can be a lot of crossover between hyper/hypo symptoms. You're deffo not hyper in either of those results. You feel unwell because you need to be on a higher dose of meds.

    If it helps your doctor sounds quite good. They're doing all the right tests and there aren't many who will prescribe t3 without a fight.

  • Yes so diagnosed originally with hypo, then I was normal for 2 years, but still tired, so dr referred me to endocrinology , he lowerd my thyroxine as I was to try T3. Of course I went under again,! Back up to the original 100 plus the t3, but endo wanted ft4 at nearer 20, dr said this week that I'm on the edge of normal, going into hyper, but as I'm still tired not to change dose, she gave me blood form to go back just before xmas!

    What do you make from the antibodies result, I'm confused, I will ask for other tests to be done, or I could try an iron supplement ?

    Thank you

  • Yes, but he lowered your levo to add t3, which brought you back to the same level of meds. T3 is about 3-5X 'stronger' or more accessible, so 10 t3 = 30-50 t4.

    You may have gone hypo just because you had a little blip. We can go up and down independent of meds.

    Don't have the first idea what your doc is talking about, you aren't anywhere near hyper in a month of Sundays. All your results are still low, and t4 is actually below the range. Are you sure doc said borderline hyper and not borderline something else, like if your antibodies are just near the end of the range they may say that is borderline, but your thyroid results are unequivocal. You are still not on anywhere near enough medication.

    Re: 'The neurology asked for anti thyroid peroxidase , he wrote to my dr with this..."..anti thyroid indicated borderline high result 59.79 IU/ml T.R 0-34, she is diagnosed with hyperthyroidism and her Tsh from June was low, this points to need to adjust"' It looks like maybe they only tested one of your antibodies, which was high (if the range goes to 34 and your result is 59.79 that doesn't sound 'borderline' - ??), so asking for the other to be tested.

    Maybe your tsh was low in June but we don't have that result here.

  • Sorry but FT4 does not increase when taking T3 - if anything it goes lower.

    Your fatigue could be due to low FERRITIN - FOLATE - B12 - VitD. Have they been tested ?

    Anti-bodies seem quite low but over range in your area lab.

    What other meds are you taking in addition to the AD's ?

  • Yes, of course, I missed that re low t4. Why don't they know this??

    Ndobins when you take t3 (and after levo has been reduced) your t4 goes down, so trying to get it high in range while you're on t3 as well is not going to happen. When taking t3 you really need to keep an eye on t3 levels and more or less ignore t4.

  • Endo said the higher thyroxine would raise my t4 which it did , but now it seems my Tsh from June this year was just below the range, ( can't remember it) it was marked red on her screen! Yes had all tests done except ferritin I think,

    I'm on 20 mg of fluoxetine 125 mcg thyroxine, 20 mg of nortriptyline ( was on 10 mcg of leothyronine ) took myself off that in July. Tried fish oils, B12 and vitamin d, and an iron tonic ( all 2 years ago) when depression first diagnosed , so keen to get well, so I came off everything as I didn't know where I was ! Bought magnesium too, not opened it yet. I only eat fish, I'm a good weight and not anemic but maybe I need a supplement ?. :/ thank u

  • So as some of us have suggested have those tests done - Ferritin - Folate - VitD and importantly B12. All will be low in range - I am suspecting. Please get in the habit of obtaining copies of all your results with ranges so you can monitor your OWN progress.

  • Will do, they were all normal last year but worth doing again.

  • Ndobins - you mentioned it was about 2 years ago earlier. Normal is an opinion and not a result - do you have the results with the ranges ?

    Docs will say * normal * when they mean in range - BUT - it is WHERE you are in the range that matters. Sorry - but there is so much to learn about Thyroid and the Deficiencies many of us suffer with :-)

  • I'm going to get them all on Monday, go through from when I was diagnosed

  • Ndobins

    "anti thyroid indicated borderline high result 59.79 IU/ml T.R 0-34,"

    Assuming TR 0-34 is the range, I wouldn't call that borderline, I would call borderline 32-34ish. I would say you definitely have autoimmune thyroid disease aka Hashimoto's.

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    thyroiduk.org.uk/tuk/about_...

    A few ways to help reduce the antibody attacks:

    Adopt a completely gluten free diet (no cheating - many members find this helps enormously. Some find they also need to be dairy free.

    Supplement with Selenium.

    Keep TSH very low/ suppressed.

    Have you had iron tested? Find out your level first before supplementing as too much is as bad as too little.

  • Yes I'm fine with iron, I only eat fish no meat but always been fine, I thought I might have this as looked up the test, but the dr didn't seem bothered, but why else would neurologist ask for the anti bodies test?.? If then not to look at result, he has given me an open ended appointment and he was very helpful, I think I'll get him to test everything and go from there? My dr seems to just ignore everything but Tsh! Don't they all!

    I wondered if gluten free would help... Thank u

  • Sorry that should read diagnosed with Hypothyroidism not hyper!

  • Tsh 0.27-4.2

    Ft4 12-22

    Ft3 3.1 -6.8

  • No worries, as long as it is your mistake rather than theirs. :-)

    Would you mind at some stage going back to your results and adding in the ranges there? It will make it easier to interpret.

    To edit you go under your post and click on the little arrow.

  • Done! Thank u :)

  • You can look at the website of Kelly Brogan without buying the book. It could help you to sort out coming off the AD's .....She is a Psychiatrist who has been in practice for many years and does not think many of the AD's help people be well. She talks about other approaches ......

    There is loads of information on this forum linking low mood with low thyroid.

  • I will look at this book :)

  • Welcome to our forum, and it isn't unusual to have a dysfunction of our thyroid gland after delivery and this is a link re fertility/pregnancy which might be helpful.

    I hate the word 'borderline' when the doctor ignores clear clinical symptoms in favour of giving another prescription for the symptom instead of the root cause due to the blood test results alone.

    Get a print-out of your results with the ranges and post on a new question. Also your symptoms could be due to be undermedicated rather than over as sometimes there is a cross-over of symptoms. Also three months seems a long time before your next blood test if you have clinical symptoms. We have a yearly test when we are stable or a test if symptoms return.

    When you have a blood test it should be fasting and the earliest possible. Leave about 24 hours approx between your last dose of levo and the test and take it afterwards. This allows the TSH to be at it its highest as it reduces throughout the day.

    Ask for a full thyroid blood test including TSH, T3, T4, Free T4 and Free T3 and thyroid antibodies. At the same time get B12, Vit D, iron, ferritin and folate as we can be deficient.

    Levothyroxine is inactive and has to convert to T3 (liothyronine) the active hormone required in our billions of receptor cells in order for us to function. Of course it has to be an optimal dose i.e that the patient feels well and symptom-free. Usually if we complain they refer to the blood results alone and state its not due to hypothyroidism but they will prescribe for the symptom but not the cause.

  • Thank you, I will call the Drs Monday,

    Do you think as seasidesusie said I could have Hashimotos? I asked my dr if she would do antibodies again but she said no it's not needed! :/

  • Re-testing of anti-bodies is not useful at this stage. And yes if you are over range then you have Hashimotos. Levels vary from lab to lab - so very confusing. I think I mentioned they were quite low - mine were in the 1000's :-) After many years they are now around the 300 mark. Going gluten free was something I did 3 years ago and the anti-bodies came down.

  • Wow thank you for sharing, it seems I do need to see the neurologist again, he was fantastic

  • ... sorry why a neurologist ? Do you mean an Endocrinologist ?

  • He was the one who sent me for the antibodies test and wrote to my dr saying I need my medication adjusted, but she has said re test in three months, my endocrinologist has discharged me because my levels were all normal this year, the neurologist sent me for MRI scan due to eye pain. :)

  • Hope the scan went well. I had eye problems when my B12 was low and my Homocysteine raised. Low B12 can affect the nerves ..... as I know to my cost.

  • Thank you I'll let you know :) think I'll get him to run all tests again with ranges and results to hand

  • T3 (three) hormone is what your cells need. So it is hard to believe that "T3 [med] was not working". T4 (four) hormone is just a "raw material" to be converted into T3 hormone.

    T3 med is very effective but short-acting

  • I didn't feel any different and never knew if it was worth taking, while my levels were so up and down :( because so short lived and he only put me on 10 mcg a day!

  • Don't go by numbers go by how you FEEL.

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