Thyroid Levels after total thyroidectomy - should I be aiming for those that saw me in good health prior to surgery?

Since my TT on 16th May I have had a horrendous time with my health and have not been able to yet return to work as it seems that I was probably fully replaced prior to surgery and it turns out I am very sensitive to changes in my medication. Prior to surgery I was on 100 mg of thyroxine then afterwards put on 150mg. I am now on 112.5 and my GP still thinks this will need to be reduced as my levels at the time of the drop from 125 to 112.5 were TSH 0.07 (0.35-3.5), FT4 19.7 (7.8 - 17.0), FT3 5.5 (3.4 - 6.00). I still feel far from well on 112.5 (problems sleeping, anxiety, tremors etc.) and am due to have blood test on 13th August. I do worry about dropping my throxine too much but do have a very good endocrinologist who is very supportive and cannot go on feeling so rubbish. I guess my main question is should I be aiming for the same blood test levels that saw me achieve good health prior to my TT or are these now irrelevant? I know I need to ask my endo this question but until then would really value the advice that you guys can offer as you are so knowledgeable.

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  • First of all, may I say that your body is still probably on shock after having a major organ removed. It is VERY early days yet, and that is not a very high dose for someone without a thyroid.

    Have you had your calcium checked, that can cause the shakes. In fact, that should be the first thing to come to mind when someone has just had a thyroidectomy, because sometimes the parathyroids go into a bit of a decline temporarily, and sometimes they can be damaged during surgery.

    If you are referring to the TSH, it could well be irrelevant because although the medical profession don't seem to have totally twigged, when the thyroid no longer exists the whole hypothalamus-pituitary-thyroid axis is messed up. To be truthful, the FT4 is very slightly over and the TSH is clearly quite low, but the free T3 which is the most important one, is well in the normal range. If you have any record of your results when you felt well, then do please put them on here and see now they look compared to now.

    Unless it has already been done, do please get your calcium checked.

    Marie XX

  • Hi Marie and thank you. My calcium was checked with the last bloods and all was fine. I feel like I will never get better as I just feel so unwell all of the time. Everyone I see tries to suggest that the way I am feeling is all in my mind but I am so desperate to get on with my life that this is not the case.

    I know I am on a low dose of thyroxine but do still feel I am on too much with the tremor, going to the loo frequently etc. but do worry about tweaking the dose after the bloods next week so I am arranging to see my endo privately to discuss rather than my GP who thinks the TSH is the important result!

    The only result that I have to hand from when I felt reasonable rather than well is a TSH of 0.47 (0.35 - 3.5). I'm going to ask for the others and will discuss this question with my endo.

    Prior to my surgery I was given a leaflet that said I would be back to work in 2- 3 weeks and never referenced any of the horrendous problems I have had. I just want my life back :)

    By the way, I'm a Marie too! xx

  • Well, Hello Marie!

    I can't imagine where they got that 'back to work in 2-3 weeks'! I am a tough cookie and it took me at least 6 weeks. I had a partial in 1963 and a TT in 1981 and on neither occasion was I back to work in 2-3 weeks. All the same, you should be feeling better than you do, although in those days they were not so obsessed with TSH and went more on symptoms.

    Has it now been left to the GP to sort your 'replacement' thyroid, or are you still seeing an endo? Oh, yes. I have just re-read and you are seeing an endo. That's good, because it really is important to get it right as soon as possible. Less than optimal dosing long-term can lead to problems. Were you hypo before your TT, or were you hyper and on block and replace? The reason I ask is because you mention your pre-op dosage as 100. It is possible that you would do better with some T3 added instead of some of the T4, but it is not easy to get it prescribed. There is a school of thought out there that says all TT patients should have some T3 as well as T4 to replace what the thyroid would have been producing. It is less of a strain on the body if there is some T3 available which does not have to be converted from T4.

    After my TT I was on 150 T4 (levothyroxine) for 23 years, I was OK but still had a lot of symptoms, but I just got on with it. And then a new GP thought I was overdosed and reduced it to 100 so I have been less than optimally dosed for 23 years and under-dosed for the last 7 years or so, and it all made me quite ill, causing heart and cholesterol problems amongst other things. I am on the road to recovery but it has taken a lot of detective work.

    Do take all those results with you and have a talk to your endo, explain how you feel, and see what ensues.

    I think you should be aiming for the T3 level which made you well before your TT, rather than being concerned about the TSH. The T3 is what makes the body tick, and that's the one which needs to be right - for you.

    Take care, and good luck with the endo, let us all know what happens, good OR bad! (Good hopefully)!

    Marie XX

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