Thyroid cancer and Levothyroxine (T4)

I am so relieved to see other people talking about Levothyroxine (T4)! Since having my thyroid removed due to cancer five years ago I have struggled to get through the day sometimes with the feeling that I am literally 'running on empty'. Falling asleep at the wheel on very short car journeys, aching and stiffness in every single part of my body, unable to concentrate on anything with extreme fatigue being the worst of my symptoms. My regular blood tests come back and my doctors say everything is as it should be - I have only ever been offered the option of lowering my dose (175mcg) to improve my sleep - no one has EVER mentioned the possibility of T3 in addition to T4. Is it really just down to costs or is it more complicated than that? I have written to my ENT consultant asking for an earlier check up so that we can discuss other options. That was 3 weeks ago and I haven't had any response. Am I wasting my time..?

I can see from reading posts that there are people suffering with the same symptoms as me and I have always put this down to lack of proper sleep. The advice from all the medical professionals I have spoken to is that I have no choice but to feel this way and that it is the lesser of two evils (in other words - changing my medication runs the risk of the cancer returning). Have I been deceived?

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9 Replies

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  • Oh gosh! I think you have! Why would changing to another form of thyroid hormone replacement, make the cancer come back? The important thing is to keep the TSH suppressed. And what could be better for suppressing the TSH than taking some form of T3?

    The problem is, doctors are so badly under-educated in thyroid, that all they know about is levo. The do not understand the alternatives - T3 and NDT (which is T4 and T3). They don't know how to dose it and they don't know how to read the blood test results. And, they are terrified of T3, anyway, believing it to be some potent super drug that will give you a heart attack! All rubbish, of course.

    The thyroid gland, itself, makes mainly T4, but it does make quite significant quantities of T3 - the short-fall being made up by conversion of T4, as and when it's needed. That's how it is in healthy people. But, if you have had your gland removed, then you are relying totally on conversion of T4. And, we're not all very good at that. Makes sense to me that they should at least try adding in some T3, and see how the patient does on it.

    The first thing you should do, is get hold of copies of your blood tests. You need to know exactly what was tested, and exactly what the results were. Because if you hope to convince your doctors to prescribe you T3, you've got to know what you're talking about. Just doing an Oliver Twist and saying 'please, sir, can I have some T3?' is probably not going to get you anywhere. So, get those results - it's your legal right to have them, if you live in the UK - and post them on here - with the ranges - and let's see exactly what's going on. :)

  • Point taken - and thank you so much for the advice - I need to be better informed about my own results before I go wading in! However, this has given me some confidence to at least question my current medication with confidence!

  • You're welcome.:)

  • If the medical profession told you "The advice from all the medical professionals I have spoken to is that I have no choice but to feel this way " it's quite certain they all have their own thyroid glands and tell their unwell patients the same as they told you

    We have to read and learn ourselves the first thing to know is never to accept 'normal' 'fine' or o.k. with regard to blood test results.

    Always get the very earliest appointment, fasting and allow a 24 hour gap between your last dose and the test and take afterwards. I also think you should have some T3 added to your T4.

    Always get a print-out of your results with the the ranges for your own records and you can post if you have a query.

    As greygoose has pointed outed we have to read/learn/ask questions on the forum, as it is doubtful few doctors know much more than the TSH (Thyroid Stimulating Hormone) which rises as thyroid hormone lowers in order to try to flag more thyroid hormones from a gland which doesn't work very well.

    Ask GP to test B12, Vit D, iron, ferritin and folate as we can be deficient which will also cause problems.

  • Thanks for your reply! I am always confused by advice because there is so much out there but it is mainly for people with a thyroid gland that just doesn't work properly whereas my thyroid gland was completely removed. I'm taking it all in - this is interesting and does give me some hope for a future with better health!

  • Research by several different researchers (we have one as an Adviser to Thyroiduk.org.uk) who have studied the effects of the addition of T3 to T4 and I shall give you a link.

    healthunlocked.com/thyroidu...

    I have my thyroid gland and couldn't get well on T4 only. I felt so much better when T3 was added. Eventually I took T3 only and it suits me much better. We should have the freedom to try several thyroid hormone replacements if we have clinical symptoms, be it NDT (the very first and original replacement since 1892) then T4/T3 and, for some, T3 only.

  • Sounds very familiar to me, fatigue, tiredness, docs tell you there's nothing wrong, banging your head on a stone wall etc etc..........

    I had that for 8 years following a TT and I found no solution with increasing/reducing dose, taking extra vitamins and weird Chinese medicines, avoiding certain foods and eating loads of vegetables/fruit or whatever.

    I simply gave up and sought my own solution which was remarkably easy if you just accept the fact that the doctors/endocrinologists etc are under instructions (they call them "recommendations") to treat you exactly the way you have been treated. For those without a working thyroid especially, this treatment is simply pathetically inadequate. I have found almost zero mention of how thyroidless victims should be treated differently in any "official" documentation.

    I got some NDT and my problems were solved. I do not feel perfect by a long way but this is perhaps due to both my increasing age or, more likely, the damage that was caused to my body by taking the synthetic chemical levothyroxine rather that the NATURAL porcine NDT (Natural Desiccated Thyroid, often referred to by the BRAND NAME "Armour").

    There is probably little, if any, possibility of you now being prescribed synthetic Liothyronine (T3) in addition to some levothyroxine (T4), but there is no harm in asking your doc about this alternative treatment. Knowing what I now know, I would, in your position, abandon the NHS and source some NDT and see if it improves my health. I doubt that the optimal blood results others may mention are particularly relevant when you simply don't have a thyroid gland at all, although they are most relevant to the majority of those with thyroid afflictions.

    Above all, if you decide to take the NDT course, keep your doc fully informed in writing of why you have taken this action and from then on rely on the information you receive from those patients who have gone through the same hell as you. To keep your doc in the dark is the equivalent of being afraid of him and that in never a good position to be in. On the other hand you may have a good doctor who actually understands these things!

  • Rudaga,

    As long as your TSH remains suppressed it doesn't matter whether you are taking Levothyroxine, Levothyroxine + T3, T3 only or NDT. If your TSH is low, FT4 high and FT3 low you will almost certainly benefit from adding T3 to Levothyroxine. If your NHS endo recommends to your GP that Liothyronine (T3) and Levothyroxine combination will be beneficial your GP should prescribe.

  • Thank you so much for putting it all into perspective for me. All the responses I have had have been extremely helpful and have given me the confidence to question my current medication. It's also nice to feel like I'm not going mad - having had so many medical professionals telling me that my blood tests were perfect I was beginning to wonder whether I was imagining my symptoms!

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