Fully suppressed, but I still feel rubbish

Last Monday I had a follow up appointment with my oncologist. He told me that my TSH is fully suppressed at 0.01, Thyroglobulin was 0.02, but FT3 was elevated. Because of this, he asked me to reduce my T3 from 60 mcg (x3 tabs per day) to 50 mcg per day. I explained that I am still very fatigued, aching muscles etc. His response was that due to being overmedicated, I am going over the peak and dropping off the other side. I don't feel that I have ever 'peaked' since two hemithyroidectomy's in Jan and Feb, followed by RAI in April. Since RAI I have been significantly more tired.

I also mentioned my low body temp, to which he replied "I would be a bad Dr if I prescribed according to how warm or cool you are!" He also said that only a high temp would concern him. I just want to feel more like I used to. So far I'm feeling rather let down and disappointed.

Is there anything else which could be going on? Any advice would be very welcome.

Cheers, Nicky.

14 Replies

  • How long between your last dose of T3 and the blood being drawn for that test?

    If "not long", then that could explain you being under-dosed but test looking as if you are over-dosed.


  • >If "not long", then that could explain you being under-dosed but test looking as if you are over-dosed.

    That is a very good point. Due to the variability in T3 blood levels over the course of the day in patients on liothyronine tablets, I'm not convinced that measuring T3 levels is useful in this population - the 'normal range' for free T3 cannot readily be applied. 'Normal' levels are likely to be exceeded after each dose but levels may drop abnormally low at the end of the dosing interval.

    >he asked me to reduce my T3 from 60 mcg (x3 tabs per day) to 50 mcg per day.

    Do you take the full dose at once or in divided doses throughout the day?

  • Yes I take 20mcg morning, 20 mcg lunch and 10 mcg teatime. I try to avoid taking tablet at mealtimes by at least 30 mins both sides (if that makes sense).

    I feel bewildered at the lack of knowledge from my surgery, and even the hospital. I am not being given information or guidance or support. Nobody ever seems to have a complete set of notes/results or know what medication I'm on/how much. (sorry, rant over).

    I had to inform my surgery about tsh suppression, as the nurse practitioner did not know, and told me my tsh should be higher. It's all rather hard work....

    (sorry, again!)

  • Hi Rod, I would have taken a tablet around lunch time (12-1pm ish) and my blood was drawn about 4.35pm.

    I just don't understand why I'm still very tired - not sleepy tired, mainly physically. A year ago I was a fairly fit person. Some days now, I even struggle with stairs. If I am overdosed, surely I'd be hyper?

  • So that makes me think you took one tablet early in the day, another at around 13:00, then your third somewhat later. Is that right?

    Serum level of T3 rises for a while after taking the tablet, then falls away more slowly. 16:35 would have been well within the range for showing an artificially raised level from the 13:00 dose. Further, that 13:00 dose might have pushed T3 a bit higher because your T3 had already been lifted by the first dose. (All assumptions!)

    If, for example, you had got up, gone straight for blood test, then taken T3, the story would very likely have looked completely different.

    Does that make sense?


  • Sorry Rod, wrote huge message then phone died, and message was lost. Child had taken charger, so couldn't charge - aarrggghhh!

    I find it all a bit much really. It's quite complex isn't it? I wish the medical professionals looking after me, would give the correct information, guidance and support required. Different people at my surgery have told me that I have a specialist condition beyond their range of expertise, but since they have to treat me between hospital appointments, are they not obliged to 'read up'?

    Even my cancer nurse can't give straight forward answers without speaking to the Oncologist Dr.who only seems to be in twice a week, then is far too busy to answer questions immediately. Then says, see your GP (who I know, knows nothing and would refer me back to hospital, with another 2 week + wait for appointment!) I'm ranting again - apologies.

    Apparently I eventually find out that it's perfectly normal to have a very constricted throat post op/rai.

    Also found out recently that some patients are given post op exercises to do. I wasn't. Nobody ever mentioned exercise to me.

    Very frustrated. They even changed my diagnosis without telling me. I found out via a cc letter to surgery that my ca was follicular, not papillary.

    Cheers Rod,

    Nicky :-(

  • I have a sort of very tiny bit of a dream.

    When we are diagnosed, the doctor presses a button and a little book pops out of a printer. Nothing fancy but a basic "this is what you have got" with some advice and pointers.

    Until then, we all have to do what we are doing - ask the internet, Dr Google, Nurse TUK, etc. And I shall silently bent my spleen at doctors who tell patients not to look up anything.

    All the best


  • Thanks Rod. Wouldn't it be nice if that magic printer existed. Until then.......:-\

  • I was told that cats have a fasting blood test first thing for thyroid. Why doesn't my Dr tell me to do the same.

    Yes, your comments above do make sense.

    I also wonder whether my adrenals are acting up. Before diagnosis, my Dr explained that a lot of my symptoms were due to adrenal issues. I also lost my younger sister age 35 to cancer less than a year before my diagnosis, so I believe that intense stress and grief have played a part in all of this.

  • I'd consider posting that as a new question, if I were you. I feel very under-aware on adrenal issues. Others are far better at offering advice from their experiences.

    Life can be very harsh. I cannot imagine what it is like for you.


  • Low body temperature can certainly be a sign of adrenal fatigue. It's what I have and my temperature fluctuates. Until just a few weeks ago it was always around 35.5 - had been since I was a teenager. I am taking a high level of adrenal support, on the advice of Dr P. My temperature has risen by an average of 1 degree. It is now usually something between 36.2 and 36.7, but varies from day to day.

    If you think you might have adrenal problems, take a look at this adrenalfatigue.org/take-the... It might also be worth ordering the Genova 24hr saliva test.

  • Thank you rosetrees, my normal adult temp has always been 36.4, but is currently frequently as low as 35.5. I know this is not correct for me. I will investigate further. Do dr's have knowledge of adrenal testing, or do I have to do it myself? If I DO it myself, can I take results to them for treatment? Questions, questions.....thanks x

  • My GP has no interest at all in my treatment. I haven't seen him for weeks. I saw Dr P and am following his advice and treatment regime. I took the Genova test before I saw him, so had the results with me.

    Another adrenal clue is what your blood pressure does when you stand up. Dr P asks you to measure it sitting and standing. When I crashed a few weeks ago I could see that my BP dropped dramatically on standing. Once I came out of the crash that stopped happening.

    Dr P does phone consultations if you can't get to see him. His contact details and clinic dates are here tpauk.com/content/1330/dr-p...

  • Was interested in your post nickym1, I too have had a thyroidectomy and RAI x 2. Today I am so fatigued after recently upping my T3 dose to 70mcg. I too have low temperature. I would like to think my adrenals are much healthier these days. Have just ordered some Armour, in the hope of a bit of Armour with the T3 may help things.

    Just to say really you are not alone in trying to find some answers.

You may also like...