Am I asking the right thing?

Hi i was diagnosed with hypothyroidism about a year ago now they believe I developed it through pregnancy which was about 18months ago. I was put on 100 levothyroxine and was slowly improving on that and about 4months ago I was feeling the best I had and had lost 3 1/2 stone. My gp then said I was over and needed to drop my meds. I went down to alternative 1 day 100 next day 75. Then the last 6 weeks I have been down to 75 level per day. I'm now feeling horrendous, I'm gaining weight again, constipation, pins and needles, hair loss and dry eyes etc. I went to my gp Wednesday and asked for more bloods, From researching everything I'm worried my levels will all be ok but maybe my T4 won't be converting to T3, if so would I need to take some T3.

So my main concern is what do I ask for/say to my GP if all me levels come back ok?

As you can see I'm not very knowledgable on the thyroid subject and I'm hoping to learn much more about the condition and what levels are optimum.

Thanks in advance

4 Replies

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  • There is one extremely over-simplistic way of looking at the impact of reduced dosing.

    If you are taking 100 and you need 95, your body simply has to get rid of 5 a day. That shouldn't be too difficult - we have pathways for disposing of excess thryoid hormone.

    If you are taking 100 and you need 105, your body is permanently in deficit. Like having a bank overdraft, it saps your bodily processes every day.

    This is not an argument for over-medicating, far from it, but is a plea to prescribe enough.

    If your doctor, in common with most, reduced your dose on the basis of low TSH alone, that is inappropriate. There are many, many threads here which explain why, when taking levothyroxine only, we can expect TSH to be low, even very low, and that it does NOT mean over-treatment.

    Here is one started by an esteemed thyroid researcher who is also a Thyroid UK advisor:

    healthunlocked.com/thyroidu...

    Get your blood test results, making sure you have the reference ranges as well. Post here. You will get opinions!

    Yes - you could have other issues such as poor conversion, but you don't stand a chance if under-medicated.

  • Seems to me that if you were well on 100 mcg, then you need to ask to go back to 100 mcg. It's only a low dose, and it's very unlikely that your doctor really knows what he's doing. Not many of them do.

    Another thing you need to ask for, is a copy of your results (with ranges). If you live in the UK, it is your legal right to have a copy, under the 1998 Data Protection Act. You need to see exactly what was tested, and exactly what the results were. If your doctor is only testing the TSH, then he has absolutely no idea whether you were over-medicated, or not. The TSH is irrelevant once on thyroid hormone replacement, unless it goes high.

    So, that should be your first question : can I have a print out of my results, please. You could ring the receptionist and ask her, then arrange a time to go and pick them up. :)

  • Bpthyroid Just to add to the great advice already given, if your results come back 'Ok' or your GP says they are 'normal' then that just means they are somewhere within the range but they are not optimal for you. As mentioned, your GP will have reduced your dose because your TSH was low.

    According to the BMA's booklet, "Understanding Thyroid Disorders", written by Dr Toft, a leading endocrinologist and past president of the British Thyroid Association, many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

    He states in Pulse Online Magazine:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can get a copy of the article by emailing louise.roberts@thyroiduk.org.uk which you can then print out to show your GP.

  • Thank you everyone for your response this is very helpful to me, I've got an appointment Wednesday so I will ask for my previous 2 blood test results and the results from my latest test and I will post them on here.

    Also thank you for all the links I will have a read of everything and hopefully I will get my head around all these different optimal levels.

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