Can anyone help

Hi just wondering if anyone can help me im being kept in suppression following thyroid cancer TSH 0.01 not sure about t3 and t4 levels all i know that since i was started on levthyroxine 200mcg i have felt so unwell with a number of symptoms i have tried so hard to speak with my oncologist and my GP about how i feel but come away with no answers and just tried to pull myself together and get on with it but ive got to a point were i just feel i cant live like this any more and made an appointment to see my GP --im a little unsure if i should be asking for any sort of blood-works to be carried out or should i be referred to an endocrinologist as it seems to be my oncologist deciding on my medication and things and my GP just goes along with what my oncologist decides but its not them living the life of hell ---Would be very grateful for any advice and thank you in advance----Karen

14 Replies

  • hang in there buddy

    where are you in the country? we can help you find someone good..

  • Hi i live in Gloucestershire

  • Your 0.01 is low and could suggest that you're over medicated... what are your symptoms? get a thermometer.. what is your temperature?

    If you're hot... over 98.6 first thing in the morning before you get out of bed for more than 4 days in a row when you're not ovulating.. then you're either sick (fever) or you're Hyper

    If you're cold.. lower than 97 or in the low (97s) then you're hypo

    If you're hyper, you can drop your meds down to 150 and see if you feel better.. you can do this by chopping them up if your GP won't get involved

    If you're hypo, I'd be surprised, but I'm not an endo....

  • Karen,

    Does not sound like you are being handled very well.

    I wonder if you could explain what symptoms/problems you feel you have?

    Are you on any other medicines?


  • Hi Rod --Fatigued permanently ,palpitations, hot sweats,so low in mood all the time get anxious about the slightest things

    not taking any other medication


  • Hi there i have thought about reducing my meds and even asked my oncologist if i could do so and he replied no it was not an option at this stage of getting over the cancer and it was important to keep me in a suppressed state to reduce the cancer of recurring so im a bit reluctant to do so --after i had my total thyroidectomy i was placed on T3 cytomel and really felt well-- after my RAI treatment and getting the all clear from cancer i was placed on levothyroxine and taken off the t3 this was when my problems started everyday seems to be a task im so fatigued all the time everyday things just seem to tire me out i go to bed tired and get up tired i am getting palpitations and terrible hot sweats i feel so low in mood all the time and just burst into tears if anyone asks me how i am-- being so tired all the time is my main problem-- i struggle going to work even though i only work 20 hours a week now and i have no social life at all because of the way i feel and before all this i was a very bubbly sort of person always on the go ive tried to push my self to get back to normal but it just makes me feel 100 times worse --im not on any other medication

  • I think you are answering your own question.

    Consider asking (that's my polite version) to be put back onto T3. If nothing else, a significant proportion of your medicine (say a third) rather than staying on levothyroxine only. How much T3 were you on?

    The other outside possibility is switching from Mercury Pharma levothyroxine to Actavis levothyroxine (or vice versa). They are the only makes of 50 and 100 microgram tablets in the UK.


  • I was taking 60mcg spread out over 3x daily .my doctor won't consider the combination of the two but i have considered doing this myself has I've still got T3 but i haven't got a clue about the dosage of mixing the two..thank you very much for your answers ...Karen

  • Hi there, I've had the same problems. I'm 5 years down the road of thyroid surgery for cancer. I've had a lot of trouble with Levothyroxine. I've suffered a lot of anxiety and every day was very stressful to the point where I woke up fearful every morning. I really sympathise with what you are going through.

    I found it really difficult to explain to my GP the extent of my problems and how it was affecting me. He never took a full history of ALL my symptoms. In the end when I ended up at A&E with a major panic attack and was unable to go to work he took me seriously but it took a long time to get the help I needed. In the meantime I suffered terrible problems working and my home life really suffered too. I didn't know that I could get more help and didn't know what to ask for or what to do. I found it more and more difficult to manage my health and make medical appointments as I became more unwell.

    REcently, I have just seen a new young consultant in an ENT department for my yearly check up, I am feeling a lot better these days but when I explained the problems I've had he promised to refer me to the Endocrinology department. I don't know why I haven't been referred before.

    One suggestion is to write to your oncologist and copy the letter to your GP. Explain the problems that you are having and request more help to manage your condition effectively. Ask who is the best person or the best department to help you to understand and manage your condition effectively in the long term. Explain that you want to be able to get advice and help quickly from someone, when you have problems with your medication or symptoms, who is knowledgeable about the more complicated aspects of the endocrine system.

    My understanding is that if you have had thyroid cancer it is recommended that you see an endocrinologist. In the location you and I live, I think it's quite common for thyroid cancer to be managed between an Oncologist and Primary Care but I don't think it's working very well. It didn't work for me. I had the same situation of my Oncologist deciding my medication and my GP agreeing with it but my Oncologist didn't know the problems I was having and the GP wasn't informing him. I didn't know how to manage the relationship between my GP and my Oncologist.

    My GP made useless suggestions like stop drinking coffee (not that I drank much) take Levothyroxine at night, (which made no difference) and suggested that I was missing my tablets which I have only ever taken my tablets late once in 5 years!! I tried each of the suggestions in the hope that it would help and then 6 weeks later was no better so it just delayed me getting the help I needed.

    I'm finding it better now that I've been moved to the ENT department at the hospital and finally referred to the endocrinology department. Mostly swapping to a different Levothyroxine and sticking to it has made a difference for me.

    Ask for help quickly and don't leave it 5 years like I did!! You are entitled to get the help you need. If nothing else at least your GP and Oncologist will be alerted to the problems you are experiencing.

    Also, I think that Rod's suggestion of trying a different Levothyroxine is a good one. I've had a lot of problems with Levothyroxine and found some types suit me and others don't. I've discovered that Levothyroxine is not a straightforward medication. In fact, my GP and pharmacy have had to learn alongside me and are now a lot more sympathetic to the fact that patients react differently to different formulations of the drug. When you find one that suits you, stick to it and don't let the pharmacy switch it.

    I haven't tried taking t3 in combination yet but when I see the endo I'll discuss it.

  • Thank you for the reply its made me more determined to get my self sorted one way or another

  • Just a couple of thoughts: the thyroid naturally produces some T3 and since you've had a total thyroidectomy you won't be producing any but relying totally on converting T4 so, to me anyway, it would seem logical to add at least a little T3 to your thyroxine. Also T3 tends to suppress TSH more than T4 does so it's likely you would achieve suppression at a lower equivalent dose. That would possibly reduce the palpitations and sweats which are signs of being hyperthyroid. Your low mood may also be down to lack of T3 which has been shown to help with low mood/depression. If your GP/oncologist won't agree or are unwilling to add T3 I would definitely ask to see an endocrinologist.

  • Thank you for the advice much appreciated

  • Thank you all so much for your replies

    Im off to see my doctor tomorow afternoon and will be asking about the T3 once again.

    I will also be asking about a referal to see an endo not sure i will get anywhere

    Today i have managed to rfind an Endocrinologist that will see me private but the costs are very expensive but im willing to pay the cost just want to feel normal again and if that can happen its well worth the money

    Thanks again for the support. Karen xx

  • Good luck with your docs appointment. I hope it goes well and I hope you can get what you need on the National Health.

    I'm not sure how it all works in terms of budgets on the NHS but I know it was the hospital that referred me and not my GP although my GP was aware of all the adverse symptoms I was experiencing.

    Unfortunately I didn't know anyone else who had thyroid cancer or was on suppression treatment and wasn't confident to insist on a referral. I was ashamed and confused about the symptoms I was experiencing.

    The good news is that there is hope and you will feel much better with the right support. I no longer have any anxiety or the other problems I ran into. I'm perfectly functional and holding down a busy responsible job. My life was hellish but it's gone back to normal.

    I went on an 'ACT Mindfully' course which I enjoyed but getting my medication sorted out was the main key. Please let me know how you get on. I really, really want other people to avoid the problems I've had and get the right help quickly although it can take a while to level medication out.

    Someone on this site mentioned that there was a Thyroid UK list of Endo's. If you're planning to see one privately it might be worth finding out about it?

    I wish you all the very best!!

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