Varying TSH levels and frequent changes of levothyroxine dose, 1.5 year post surgery

The optimum is when you and your supporting medical professionals are all in agreement and heading in a direction you all understand. I had a diagnosis of thyroid cancer in 2019 so my thyroid was removed in two operations. I had RAI in October 2020 which was delayed due to Covid. I had very regular thyroid blood tests and annual tests of thyroglobulin levels. For almost all of the next 5 years my tsh was kept at a very suppressed level below 0.5 and often below 0.1. My dosage fluctuated quite a bit and it was only recently when thankfully I was being discharged by the oncologist that she advised the guidelines were being changed and that the guidelines were possibly moving away from high levels of suppression. There are some health risks in too high levels of suppression  and now 5 years down the line I am taking 100 mcg of thyroxine daily and targeting  a tsh level between o.4 and 2.0. I am to have quarterly blood tests for next 12 months. This reply may not be helpful as my oncologist was digesting the new guidelines when I was discharged but it it is a good idea to press to understand what the target levels are and why. Best wishes for the future. 

Hi there.  I had my initial diagnosis in 2019, first op in Nov with a partial removal of thyroid and 6 weeks later after lab results came back they did another op to remove thyroid completely due to neighboring lymph nodes having cancer in them,  Had RAI in Jan 2020.  My journey thereafter is my TSH over the last 2 years has been up and down, my latest results being 6.8 !!!  All they do is increase my LEVO until is goes down again.  I am currently on 75mg and I take a 100mg once a week until another blood test after 6 weeks until it goes down again.  I have learnt a lot about myself and my body since my first diagnosis as I soon realised that unfortunately the Consultant did not seem to have any time to explain the whole process of why I got Cancer in the first place and how I can keep it from coming back.  I am under Guys and St Thomas.  I cannot fault my care from them in any other way but they only have time for a check up and send me on my way.  If I have had any other symptoms that are worrying they do check me , scans etc to make sure it has not returned.  My advice would be do your own research, look at what you eat.  I realised that I have had acid reflux for many years due to eating things that I am allergic to, other symptoms of this is diarrhoea and raspy voice and throat constriction.  This has always sent me into a tail spin as I was convinced the cancer had come back.  I now know it is a mild anaphylaxis.  So is that what caused the cancer in the first place.  Constant inflammation of the throat.  Who knows, I just know that I cut out certain foods now and take antihistamines to control my symptoms.  

Hi, I had my full thyroidectomy in 2014 and then due to recurrence in lymph nodes, left neck dissection and RAI in 2017, I have been on 125mg levo everyday for suppression (range 0.1-0.5) until recently when I was put on 150mg at weekends as my levels had increased. My TSH levels fluctuate occasionally and I know it can take some time for your levels to stabilise and to get the right dose but it's your Tg (thyroglobulin) levels that are important as they will show any sign of recurrence. I see my head and neck consultant every six months, occasionally he'll ask to see me every 4 months and oncologist yearly for the Tg test. Due to NHS backlog I haven't seen my head and neck consultant since December last year and it was my oncologist who picked up that tsh had risen last month. So I know it's hard not to worry but the fact that they are seeing you often and even scanning you is good, it means that if they do spot anything unusual they can act. 

I hope this helps a little bit, and knowing you aren't alone.

Julie x

Thank you all for your speedy replies. That makes me feel a lot more at ease knowing it could just be that the new guidance has allowed for the TSH levels to be higher than what was originally discussed with me. 

I was just hoping that things would level out a bit more with me being 1.5 years after surgery, but from what you’ve all experienced it seems pretty normal. I guess a lot of it is wanting to feel like I can return to a bit more of a normal life now that I am further along in this journey and not having the feeling that meds are going to keep changing and to expect phone calls telling me this for a while longer. 

I am probably being a bit impatient  and need to rethink my expectations! Thank you all for your help and advice ️♥️

Hi Snowyseal

I had part of my thyroid removed in December 2018 and then the 2nd half removed in March 2019, so its been quite a while. My thyroxine has been changed a million times,.it feels like that anyway, every time I get a blood test it seems to change. I was under the same impression as you that if TSH is too high the risk of the cancer coming back is high. I'm currently under 1. A few months ago I was told that it was practically undetectable which isn't good either as i think that can cause osteoporosis so meds were changed. 

I'm on 100 of thyroxine a day and 30mg of liothyronine which is T3. I'm surprised you're not on that too but I also have Hashimotos disease so I'm not sure if thats why. Personally I think your numbers are too high according to what I've been told that it must be suppressed but not gone altogether. I would try and see your endocrinologist and get it clarified just for peace of mind. Good luck