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Should I be on Levothyroxine at all?

Posted , 4 users are following.

jaye99682
jaye99682

In mid-October 2013 (7 months ago) my GP ran full blood tests for me as I was feeling a bit down in the dumps (not like me) - had itchy skin on my arms and was finding it difficult to adapt comfortably to changes in temperature. I particularly felt the cold. The results, with the exception of my cholesterol count, which at 7.2, was too high, were fine. My Serum Free Thyroxine (Free T4 was 15.3 (which my doctor said was withing the normal range (12-22) as was my Serum TSH at 2.22 (the normal range being 0.3-4.2). However, because of the symptoms I had described, the fact that my cholesterol was high, and because my Free T4 was in the lower section of the normal range, he thought I could be suffering from Hypothyroidism and so put me on 50mcg of Levothyroxine telling me to come back in January for another blood test (both cholesterol and thyroid) to see what effect the levothyroxine might have had. In January I took the blood tests again - my Free T4 count had gone up to 18.4, my Serum TSH had gone down to 0.90, but my cholesterol remained the same. I seemed to have no particular side effects to the dosage, and I felt marginally better, but as I had adopted a healthier low-fat diet I could well have been feeling better anyway.  Keeping me on the same 50mcg dose of Levothyroxine, he told me to come back again at the beginning of May and have another blood test to check progress then. Since that time, I have become extremely irritable and often feel tense or anxious. At the beginning of this month (May), I duly had another set of blood tests for cholesterol and thyroid, only to find that my Free T4 count had gone up even further to 20.1 (in other words approaching the top of the normal range.) My cholesterol showed no reduction. Accordingly, my GP reduced the Levothyroxine by half, to 25mcg. I have been taking 25mcg for the last few days. What I would like to know is: A: Should I have  been diagnosed at Hypothyroid in the first place (i.e. should I have been given Levothyroxine in the first place?). B: Is it likely that my increased irritability/anxiety is directly due to my FreeT4 count moving towards the top of the normal range? C:  Will halving the Levothyroxine from 50mcg to 25mcg as my GP has done simply slow down my increasing Free T4 count by half, but still likely to take me out of the top of the normal range into Hyperthyroidism? Or is it more likely to bring my Free T4 count down by half and, in doing so, get rid of the horrible symptoms of irritability and tension/anxiety that I have been feeling since mid-way through this whole experience? D: If I am likely to be pushed up into Hypothyroidism, should I be stopping the Levothyroxine completely? I should add, that with the above results in front of him, my GP has agreed that my high cholesterol is clearly not caused by Hypothyroidism, and the cholesterol issue is now being dealt with in its own right. Any thoughts on my situation would be gratefully received. 

1 like, 3 replies

3 Replies

  • Search_tpa
    Search_tpa jaye99682

    Posted

    Hi Jaye, your GP sounds as if he is 'trialling' replacement thyroid therapy which is a perfectly reasonable step and a reasonable dosage.   I'm impressed that your GP is even considering this option as GP's tend to stick to the 'party line' of 'your blood tests are in the normal range therefore you are perfectly normal and there are no explanations for your reported symptoms'.  And there's no time to ask questions before being ushered out the door.....

    The ranges used in blood tests are open to error when we factor in individual differences.  For example, you may have normally been in the very upper range, and then for some reason you fall to the bottom end without falling out of the range.  Arguablely that's a big shift in range for the individual and it's not unreasonable to expect some symptoms manifesting over time.  i've read that you get people who are clearly below the t4 range but who do not report experiencing symptoms of hypothyroidism and you get people like you are are within range, albeit on the low side, who report symptoms consistent with an under active thyroid.

    it seems as if you had a marginal improvement from the time you very given a tentative diagnosis until the blood test done in January but then noticed symptoms consistent with anxiety/irritability during the weeks to the second monitoring of bloods in May.  I'm assuming that there are no psychological/social/work factors etc that account for these symptoms therefore considering them as a result of the thyroxine dosage of 50mcg is rational and reducing the dose by half sounds like a good clinical decision.

    in answering your questions (I'm no expert so it's just my uneducated opinions)

    A) your GP is possibly working on a provisional diagnosis, he is testing out the hypothesis that you are possibly experiencing symptoms of an under active thyroid, therefore prescribing thyroxine at the initial dosage and following it up on a regular basis then adjusting according to blood results AND YOUR REPORTED CLINICAL SYMTOMS is Good Practice.  (Apologies for the shouty capitals, I'm so impressed that your GP listens to you - I'm also jealous because none of my gp's take my symptoms into account.) 

    B/C) your higher level of free t4 could be the cause, but so could any number of factors, reducing the dose would be a sensible first step to try.  The effects of a reduced dose are unclear to me.  I think it's a case of watch and wait.  Keep a note of symptoms, frequency, intensity, duration, onset/triggers.

    D) I think watchful waiting is the way to go and keep working with the GP.

    it may be worth monitoring your temperature first thing in the morning.  This is an old fashioned way to test for hypothyroidism.  Immediately on waking and before getting out of bed pop a thermometer under your tongue, mouth close and no talking.  The digital ones tend to beep and give a reading after 10-20 seconds.  ignore this reading, keep the thermometer in your mouth for a good 3-4 minutes and then take the reading.  Measuring your resting heart rate at this time is also useful.  It might even be worth measuring you heart rate at the times you feel particularly anxious/irritable.

    As an afterthought T4 levels are not the only ones to monitor.   T3 levels may be worth considering too, however, GP's are normally hellish reluctant to test T3.  See how it goes with the medication and symptom improvements.  Best wishes, Kerry.

  • Search_tpa
    Search_tpa jaye99682

    Posted

    I forgot to mention that a normal basal temperature is above 36.8 Celsius.  Ignore reading if you are feeling ill from cold/flu like symptoms, sinus problems or dental access etc.  also discount the reading if you have drunk a lot of alcohol the night before.
  • susanna1948
    susanna1948 jaye99682

    Posted

    I have been on 100mg of levo since 1997 following an RTA that supposedly killed my thyroid. Over the years the taste of the levo has changed depending on the batch, this change in taste I have notice changes the side affects the levo has on me, sometimes like you it makes me anxious and tense, sometimes I itch all over, other times I find it hard to sleep, my weight gain is horrendous and I fight all the time to keep it down, lately I have been in excruciating pain mire so than usual. I have spoken to my doctor about this but she is just nit interested and told me it was my pain embrace it!! I could have cried but instead I have stopped taking the levo! I have now been levo free for 2 weeks, the pain has all but gone, I am no longer anxious or tense and I am sleeping much better 😀 my theory Doctors haven't a clue which is why their title states PRACTICING as GP general practitioners ! Well when they have stopped practising and have it right then they will be qualified to treat me.
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