Any advise before seeing endocrinologist

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Hi.  I've been diagnosed with having an underactive thyroid for about 7 years.    In all this time I have never seen an endocrinologist.  I was put on 125mg of levothyroxine, and about 12 months ago this was increased to 150 mg.  When I was first diagnosed it was an accident.  I was being treated for depression.  My brother had just been diagnosed with hypothyroidism and he suggested I check.  My result were "on the cusp" of being low.  The endocrinologist, rather than seeing me, suggested that, because of my family history (brother, sister, mum and uncle on my father's side all have underactive thyroid) he suggestedt he dose to the doctor.  Seven years later, I am living abroad and have been told to see an endocrinologist.  I'm not sure if I have symptoms or not, because I'm not sure what "normal" feels like.  I get low moods occasionally, but put this down to life.  I did feel quite suicidal 2 years ago- the first and only time.  I also get quite tired, but again, I have three young chilldren, teach in a primary school all day and have private tuitions twice a week and a 6 hour part time job in the evening.  I put tiredness down to that.  The one major symptom I think I have though is excessive sweating.  This is usually between 9 and 10 in the evening.  Not every evening, but now and again- maybe three nights in a row in a month.  Also, I have dry patches of skin above and between my eye brows.  My TSH is 0.01 (should be between 0.27 and 4.2) my FT4 is 17.21 (should be bewteen 12 and 22) and my FT3 is 5.32 (should be between 3.1 and 6,8). Is there any advise you could give me about the type of questions I should be asking the endocrinologist?

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  • Posted

    Hi Robert. I think you should ask for antibody tests - TPOab and TGAb. If they are high, you have the auto immune version of hypothyroidism, which means your body is 'attacking' itself and will ultimately destroy the thyroid. (Hashimoto's thyroiditis).  That could be why you are experiencing symptoms which suggsest both hypo and hyper. The fact that it runs in your family indicate this may be the case. Keep a diary of all your symptoms and read up on the subject. There is a lot of information about thyroid disease out there. In my experience, doctors tend to take notice of you if they think you know what you are talking about.  
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  • Posted

    Hi Robert,  The initial diagnosis of hypothyroidism 7 years ago was done in an unusual way.  However, you seem to have managed ok on your 125mcg of levothyroxine for quite a while before it was increased to 150mcg, presumably because you must have been complaining of something making you feel unwell .. fatigue perhaps?

     My feeling is that when you see the Endocrinologist he will probably want to lower your dose due to the very low TSH reading although the T4 and T3 appear to be quite good they could be perhaps just a tad high. 

     It is usual for thyroid patients to feel fatigued now and then especially when leading a busy life such as you do.  We need to give ourselves a little break at times and not push too hard or we run out of steam.  If your levothyroxine dose is a little high it could make you feel fatigued, also the sweating is a clue to that as well so lowering it a little could help. 

    The smallest dose of levo is 25mcg so the most convenient decrease would be to halve the 25mcg = 12.5mcg this would give you 137.5mcg per day when combined with your 125mcg. and you could see if that suited you after several weeks. There are other ways of working doses out rather than cutting tablets.  Eg. Taking different doses on different days – there is a chart available for “obtaining intermediate doses of thyroxine”.  Your Endo may have one that he can give you or you can figure it out yourself if you are better at maths than me .. lol   You could find it on-line (not easy to find)  Or I could send you one.

     Whatever the Endocrinologist says or decides to do, it is ‘you’ who has to live with this condition and as you lead a busy life you must stay on your feet so if you are not feeling well after changes to doses you must think for yourself and have input about the medication when talking to doctors.  We thyroid patients must research the condition so that we don’t rely entirely on doctors to manage our health.  My advice before seeing the Endo. is not to allow them to lower your dose too much.  Even if you decide that you were better off on your original 125mcg do it gradually rather than perhaps making yourself unwell by jumping straight back to it.  Also the general rule of thumb is 1.6mcg of Levothyroxine per kilo of bodyweight.  This is just a guide and can be varied to suit.

     Best wishes …

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  • Posted

    I've read that's what most people with thyroid issues do, they explain away their symptoms as typical reactions to life which is why so few people are diagnosed or treated properly. But a stressful life depletes your cortisol and affects your thyroid so it sounds like you need to find a balance. Not always easy to do in our modern world.

    Keep track of your symptoms daily so you have "scientific" evidence for the next doctor. It sounds like you have both hypothyroid (low functioning) and hyperthyroid (high). The hyperthyroid could be caused by too much medication which is why your TSH is too low and why the rest are too high. OR as scazzoh says, check for antibodies. Hashimoto's causes swings between low and high because of the autoimmune response. If it's Hashimoto's, you'll need to tweak your diet because if you only treat the thyroid which is only a symptom and don't treat the autoimmune condition, you might not find much relief. Doctors always want to treat the symptom rather than the cause which really gets patients no where. They will sometimes refuse to do the appropriate testing as well, so you might want to look around and find a doctor who understands Hashimoto's. There are lots of books about this condition.

    Yeah, your diagnoses and initial treatment was, how to put it nicely, unprofessional, BUT typical. I think nearly half the population complains of fatigue and the other half complains of depression so doctors tend to jump on the first bandwagon without really taking a closer look. Feeding you drugs as the easy answer is cause for concern especially for someone who has experienced suicide ideation, but that's what they do. Everyone is looking for fast answers instead of being responsible health care practitioners.

    I sweat every time I'm on thyroid drugs as a side effect. Go really slowly with drugs whether you are increasing or decreasing doses. Too much drug and both your thyroid and your pituitary gland will slow down and this could produce more symptoms.

    Good luck.

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  • Posted

    Hello Robert how are you? Your results do seem to be all over the place,I have had under active thyroid for several years and only seen a specialist the one time when my numbers went sky high,but I seem to be at a nice level now,some of the symptoms you are experiencing are similar to mine I get sweats at night and I am often fatigued getting out of bed is sometimes an effort, I also have joint pains and dry skin ,I am not sure what to tell you to discuss with your dr,just say how your feeling write all your syptoms down so you don't forget on the day.good luck let me know how you get on,it can be sorted and you will feel more normal.x
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    • Posted

      Thank you for this advice.  I will write all these things down.  Thank you for your great words of encouragement.x
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