Hi! I'm new here

25 years on thyroxine, last few T3 T4 combined which helped greatly as I was symptomatic. Endo appointment this Tue which I'm not looking forward to as last appointment meds reduced and dread this happening again, I have chronic fatigue now, dreaded brain fog and very dry dull hair just like the old days. I know docs are wary of speeding up the heart and stick to blood test results like glue but it shouldn't be all about the results, I know how I feel, have felt and want to feel. Not happy at the moment.

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  • Completely sympathise, I'm in a similar boat - not been able to work for last 4 years. I've pretty much decided to manage my own condition, will have to let my GP know next time I drag myself there...

    Good luck!

  • Hi, you are right to be unhappy as you were diagnosed 25 years ago but feel better on the T3/T4 combination, as many people prefer.

    The worst thing doctors can do is adjust our meds according to the TSH, which I believe is very wrong indeed. Considering the TSH changes throughout the 24 hours of the day, so if you had a test every hour the TSH would not be the same. It is highest early a.m. and drops from then on.

    It must be the biggest faux p aux in medicine to treat the patient according to the point were a blood test falls, instead of taking more notice of the clinical symptoms.

    Your chronic fatigue may well be due to being on too low a dose of thyroid hormones.

    I'd suggest making the earliest possible appointment for a blood test and ask for a Full Thyroid Function Test (GP may not do so and some labs don't if TSH is in range) TSH, T4, T3, Free T4, Free T3 and antibodies. Also Vitamin B12, Vit D, iron, ferritin and folate. Sometimes lack of vits/minerals can cause problems.

    For a blood test, which should be the earliest and fast (you can drink water). Allow 24 hours between your last dose of thyroid hormones and the test and take them afterwards. This allows TSH to be at its highest as, has happened to you, they can reduce the dose.


    Your CFS is most probably due to being undermedicated (I am not medically qualified but have had the run-around before being finally diagnosed as hypo, the.

    You should get a print-out of your blood test results with the ranges and post them on a new question for members to comment. Always get a copy for your own records.

    I am not medically qualified but had the usual run-around before being diagnosed and then the struggle to feel well on thyroid hormones but I'm o.k. now.

    If GP wont do all the test, you can (if affordable for you) to have a private one through a recommended lab (one does pin-prick tests by post).

  • Am so sorry to hear what is happening to you. I'm afraid I too was diagnosed with CFS/ME and could not work -my symptoms were classic of hypothyroidism but nothing was done until my TSH went too high according to their TSH protocols, despite my ft4 and ft3 being really low. Even then I was grossly under treated.

    In the end I decided to take matters into my own hands and sought private consultation......my GP sent blood tests down to this private doc -was shocked to see even thOugh I was on levothyroxine at the time my TSH was6!! GP hadn't thought to consider raising my dose. I only got better through private treatment and like a fair few found NDT to be the one for me. I also found within the NDTs that I was sensitive to some fillers which caused problems with absorption. But once found the right one for me all has been resolved. My current GP goes on my ft3 & Ft4 levels NOT TSH as advised by the specialist. Long hard battle......

    You need a sympathetic endo who understands effective thyroid treatment not one who goes on TSH. If this one is ending up leaving you under treated causing you to have CFS symptoms then in your shoes I Would move on and seek a second opinion from a NDT friendly endo. Effective treatment does not leave you with a fast heart/pulse rate! Thyroid UK has a list of the good docs...

  • MissLK,

    Welcome to our forum and sorry to hear you are not feeling well.

    Endos//doctors are erroneously guided by test results which is so very wrong. If you post recent blood test results complete with ranges, members will comment.

    You sound under medicated but sometimes we can be on the correct med dose but still feel symptomatic due to deficiencies caused by previous long term low thyroid hormone. Ask your GP to test Vit B12, folate, ferritin, Vit D and again post results. A doctors "normal" may not be the same level as that which members have found to be most beneficial for good thyroid function.

  • Did you feel okay before endo dropped your dose? If so you must argue with him strongly and if he will not up your dose do what so many of us have to do and self medicate. T3 is very cheap to buy from abroad and add to your prescription, tell him you will do this if he won't help because your quality of life is more important than the unlikely damage to your health in fact he is damaging your health by the lack of medication. Don't worry about upsetting them, if you know you can self treat if necessary it means they haven't got you up against the wall, they can either help you or you will help yourself. Be calm, polite, but assertive. Ask him what research he is using to substantiate his position?

    Do you have your most recent blood results? Was your med reduced because your tsh was suppressed? This is common with t3/t4 combo and also common for Drs to freak, they will tel you your heart will go into atrial fibrillation which is a risk of stroke. This is where your hrs beats unevenly, irriatically and sometimes fast. Check your pulse regularly then you can tell him it doesn't. I argued with my endo that I would rather have a better quality of life and die earlier than a long half life. It is my life after all. He has Kept me on the t3 only I self medicated with. I find being honest and upfront is the best approach. I have m,e I still have m,e/chronic fatigue, sadly for me trying different meds hasn't resolved it, but my quality of life is better on t3 only and that's my choice. If you know you were better on a higher dose, don't let them ruin your life, the longer you are under medicated the harder it can be to get things back in balance as it can effect cortisol.

    Most importantly get a copy of your blood tests results, knowledge is power, you have a right to them.

  • PS read the post that came in the daily round up called Read This and the link that explains why blood tests poor guide to medication levels. Print it off and take it to endo.

  • So refuse to lower your meds! Your doctors are advisors only, go by how you feel rather than numbers. If your doctor tells you (wrongly) that you will get heart problems or osteoporosis then ignore him its just not true.

  • Thank you for your responses. Yes, I felt great on my higher dose, weight steady which they were not happy with, they said I was underweight but I felt good and back pain massively improved. I resisted med reduction on previous visit which they went with for T3 but reduced T4 then last visit reduced both. Now I feel rubbish, everything is an effort, I am keeping my weight steady as possible but have gained 4pounds but my stomach is very, very bloated and puffiness below eyes back (this upset me the most as it took me years to get the puffiness down and knew last two appointments with endo would undo all that). Everything just seems so unfair to thyroid sufferers, as if the condition isn't bad enough to then have to fight to maintain some semblance of health. I will post my test results on Tue. I just hope I don't start crying in there and feel like walking out, my DD is coming with me for moral support and has medical training so is more eloquent than me. She is just so furious with it all and knows how good I have been.

  • Have you actually told the Dr. that you are more interested in how you feel, than lab test numbers?

  • Yes Eddie83, to no avail. Mentioned being symptomatic and that is why I pushed for an endo appointment in the first place but he just checked my shins for dry skin, felt my neck and looked at my nails. My nails had super strength hardener on them to stop them bending and breaking, my shins get itchy frequently but not at that appointment time worst luck. I am determined to fight my corner, if I don't cry first.

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