I felt fine til my thyroxine was reduced .... has anyone ever taken a little more than their GP recommended, just to stay well?

I really hope I’m worrying unnecessarily. Brief history: Approx 17 years ago, I had an over active thyroid, this was treatment with carbimazole, then I had radio-iodine treatment to knock my thyroid out completely. This worked fine, and the doctor fine-tuned my thyroxine til everyone was happy. Until I got to 150mcg per today (I started out on 75mcg per day) I had fairly text-book symptoms – gritty eyes, hair loss, bloated face, fatigue – but the most distressing symptom was the vertigo. This terrified me, I was prescribed stemetil which helped, but once my dosage was established at 150mcg per day, all the symptoms went away, and I’ve been fine ever since.

Fast forward to September 2015. My annual blood test showed that 150mcg was too high. So the doctor reduced me to 125 per day, to see how I got on. Fair enough. I was fine to start with, but after 6 weeks or so the fatigue crept back, plus the hair loss and gritty eyes, and now I have symptoms of vertigo and my ears are ringing. The pharmacist gave me some sea sick pills (Stugeron) which have helped. I saw my GP, and said I found 125mcg too low, and asked if I could bridge the gap between 125 & 150 by alternating my dosage, taking 125 one day, 150 the next, and so on. Doctor was sympathetic, but wanted to do a blood test first. But no matter what the blood test says, I know darn fine I was OK til my dose was reduced. I see the doctor tomorrow, as my blood test results are now back, and I’m terrified she’ll say that 125 puts me within the normal range, and therefore she won’t prescribe a slightly higher dose.

In anticipation of this (and sorry, I know I’m panicking) I managed to order some thyroxine on line. So even if, god forbid, the doctor sticks to her guns at 125, I can take tweak my own dosage slightly. I only want to try the alternating dose I suggested, 125 & 150. Once the blood test had been taken, I found I’d got a spare packet of 50mcg tablets tucked in a drawer, so I’m already starting the slightly increased dose. I know it will take a few days to make any difference, but I feel so rubbish at the moment that I’m getting desperate.

Has anyone else taken a little more than their GP recommended?

16 Replies

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  • Oh absolutely, most of us have probably done that. In the old days, probably 15 years ago, my doctor thought nothing of bunging me on 200 mg per day wwithout even testing. Now a days the doctors test the tsh only, and the free t4 if you are lucky and their sole objective is to get your tsh in range...... How you feel is irrelevant. Dr Robert Utiger the inventor of the tsh test said that he hoped this would not be the case and that doctors would still note clinical symptoms, but sadly this has not happened.

    It seems like complete madness to change the dose you have done well on... Fortunately you have been sesible enough to ignore the doc and carry on your normal dosing.....

    Your health care is primarily undertaken by you, as you have a vested interest. The doc is there to guide and advise, but not to dictate. He may need reminding of this.

    Xx. G

  • Petals02, unfortunately too many doctors dose according to TSH level which leads to dose being reduced, increased, reduced again which isn't good for patients. Some patients then resort to self medicating if their GP won't adjust dose to the level they can feel well.

    Read Treatment Options in thyroiduk.org.uk/tuk/about_... and email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I am sympathetic to you as they should not adjust our dose just according to the TSH alone particularly it has proven a reduction makes you unwell.

    I would take the dose which makes me feel well and healthy. Before the blood tests were introduced we took whatever we need to be well. That might well have been double what they prescribed to day (NDT in that era).

    Dr Skinner and Dr Peatfield always have stated that our doses were too low as on NDT it was between 200mcg and 400mcg before patients recovered. Too low a dose can give us other more serious diseases.

    This is from Dr Skinner (RIP)

    This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.

    worldthyroidregister.com/Go...

    P.S. if we take a little too much thyroid hormones we will soon reduce the dose ourselves without even the need of a thyroid hormone blood test. :)

  • Thank you so much for the replies (this is my first post, and I wasn't sure if anyone would respond!). I've been tested for Vitamin B12, TSH and T4, so I'll be interested to see the results and my GP's interpretation. As I said, I may be panicking over nothing, and I may get the response I'm hoping for tomorrow, but the 'crash' I've suffered whilst reducing to 125 has really affected my quality of life, and I want to be sure I can obtain enough medication (albeit from an online pharmacy if necessarry) so that I can feel healthy again. I may be doing my GP a huge dis-service here, but her haste to reduce me to 125 after over a decade on 150 (and occasionally 175) has made me nervous.

  • PS: my plan (assuming the worst happens at the surgery tomorrow) is that I’ll have a few months alternating on 125 and 150, and if my next blood test is to the GP’s satisfaction, I will tell her that I chose to change my dosage, and given she’s happy with the results, could I now please have my dosage officially changed, rather than having to buy thyroxine off the internet.

  • Hello Petal, I too have done what you are proposing in the recent past.I have only been on thyroxine for a few years.

    I did an alternate dose then did as you proposing to do and my GP was happy to leave me at the increased level. I hope you get good news tomorrow but if not personally I would increase slightly myself.

  • Yes, sounds like a plan! Well done. Xx

  • Firstly

    Never never never take your thyroxine in the 24 hrs before a blood test

    2nd ...have it early morning and fasting and only water to drink

    3rd you must get results for

    TSH

    free t4

    Free t3

    Ferritin

    Folate

    B12

    Vit d3

    4th after graves disease your body is so sensitised to high levels of thyroid hormone it cannot cope on so called "normal " levels

    I suspect your gp is only testing TSH which is totally wrong as tsh must never be relied on its free t4 and free t3 that matters and why its vital you maintain a file of results over the years so you can prove the scenario you are writing about here

    Clearly you need 150mcg to keep you well and your GP has made you ill again by their ignorance or intransigence

  • I had my blood test at 5pm on Tuesday, and the last time I took thyroxine prior to that was 6am on Monday, so I'm hoping this time lapse may have helped? The last thing I wanted to do was take thyroxine just before my blood test.

  • The time-lapse was much too much, in that at 5 pm, your TSH would have been very, very low. Next time, try to get your test at around 8 o'clock - or even earlier - the TSH will be at its highest then. You only need to leave 24 hours between dose and test.

  • That's interesting (and can you tell I'm new round here!). So for future blood tests, how do I give myself the best possible chance of a result that makes my gp inclined to increase my dosage? I thought that having the blood test nearly 18 hours after my last dose would show low levels, and make it look like I needed more?

  • OK, so 24 hours between last dose and test. Early morning test - as early as possible but before 9.0 am. And a fasting test - just drink water - because eating also lowers the TSH. That way, you should get the highest TSH possible for you. :)

    You left you left 35 hours between last dose and test, if my calculations are correct. But, you had the test too late in the day - TSH is highest first thing in the morning and lowers throughout the day.

    And, presumably, you had breakfast and lunch during that time. I Don't quite know how that affects the TSH - whether it's lowest just after a meal and then goes up again, or what. But, certainly, having breakfast before an 8.0 am test would mean the TSH was lower than if you'd skipped breakfast. You can always eat afterwards.

    It's interesting that labs here in France, won't even take any blood after 10.30, for anything. So, most people are queuing up at the door before they open at quarter to eight.

  • Thanks, that's really helpful to know

  • If you look at the first graph on page 2 of this paper

    press.endocrine.org/doi/pdf...

    it shows you how the TSH value changes over a 24 hour period. The advice given by GG above, about when to get your blood drawn for a test, is based on this paper. Unfortunately, we can't get blood drawn at midnight, so we do the best we can to get the highest TSH possible, and that is as early in the morning as possible.

    If doctors are going to treat us according to the TSH level then we have to help ourselves to get the result that helps us to be as well as possible!

  • I wish I'd sought advice here before my test! I may resort to tweaking my own dose for the time being, then I'll request another test in 3 months, I'll make sure I go back onto the gp-advised dose the week before, and I'll follow the tips you've given me.

  • I take NDT but tweak my dose as I go! I do go by how I feel not blood tests. My endo does not like it but has to live with it!

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