Five year check up after thyroidectomy

[Inaquandary]

Hi, what’s the usual timespan between check ups after having thyroid removed ( and lymph nodes) due to papillary cancer? It’s coming up to 5 years this year. What will it entail if so?

[Hay2016]

Mine went to a yearly endo appt from year 4. Just thyroglobulin and antibodies tested with tft. Appt has been telephone and was 3.36 minutes this year. Xx

[Batty1 in reply to Hay2016]

3 minutes 36 seconds… yup that sounds about right!

[SlowDragon Administrator]

Suggest you get FULL thyroid and vitamin testing done yourself, if GP hasn’t tested more than TSH

Do you feel well ?

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

[Hidden]

Am 8 years since total thyroidectomy for cancer. Still having 6 monthly check ups. Am currently fighting a battle with my consultant who for past 2 years has insisted I need to be on 100mcg a day, and less at one point. I End up ill, he won’t admit am not on enough, gp ups dose, I feel fine, consultant not happy round and round it goes. So I seem like a difficult patient. Hopefully you’ll manage better off your suppression dose and go to yearly then be discharged. Good luck!

[Batty1 in reply to Hidden]

Im also thyroid-less pap cancer and Im also on 100mcg and barely functioning …. It does seem to be a very common dose for people without a thyroid.

[Andie in reply to Batty1]

I'm thyroid-less following pap cancer in 1985. For 22 years I took 200 mgs of Thyroxine daily (since have taken T3). I don't know how anyone without a thyroid could get along with just 100mcgs. I realise we are all different with different needs, but that dose just does not stack up.

You might have to consider self-help if they won't increase the dose.

[Hidden in reply to Andie]

I totally agree as I put below 100 is just not enough to live on, go to work etc. am currently too brain fogged to work, am a teacher, weird things come out my mouth instead of what mean to say, I can’t spell do maths, it’s terrible, so am using my time off to fight my case.

[Batty1 in reply to Hidden]

I just got back from Endo appt and he increased my T4 from 100mcg to 125mcg but left my T3 as is (10mcg) which like you said its not enough to live a decent existence without experiencing tiredness, muscle fatigue all these doctors see is normal labs and not you…. I feel like a drug addict trying to get my fix every time I see my endo.. regret my thyroidectomy everyday.

[Inaquandary in reply to Batty1]

That dose is exactly the same as mine x

[Batty1 in reply to Inaquandary]

I was on this dose few years back did good but it was early in my adjusting my meds and switched to AT which my current endo said (eww its made from pig) “shaking my head”.

[Hidden in reply to Batty1]

Yeah I was more stressed about losing my thyroid than the cancer that was in it. Hopefully the extra 25 a day will help you. you’re so right, as if we aren’t the best judge of how we know our own body feels, it’s not like we’re trying to get too much as there’s no joy in being over medicated either. Just to feel like normal would be great start!

[Batty1 in reply to Hidden]

I read on here that a normal thyroid produces thyroid hormone’s as your body needs them (if my memory serves me right) and Thyroid-less people are suppose to be ok with one pill to replace our missing hormones… just dumb.

[Hidden in reply to Batty1]

Exactly, I think when you know your own body you should be allowed to control your own dose. To vary it slightly before things go to far one way or another. That should be the target end of care after thyroidectomy in my opinion

[Hidden in reply to Batty1]

Hi Batty1

Well I was on 125x4 days and 100x3 a week 2019, and was really great on this t4 and t3 mid range t3 was a bit above and tsh was around 0.5 for a year. I was then moved from oncology to diabetes and endo.

Current consultant has forced me to have a lower dose, making me ill last year then refused to believe it was low thyroid, ft4 was 11.6 ft3 4.2, tsh 0.4 luckily gp rescued me, consultant insisted tsh must be increased AGAIN even though ft4&3 were just hitting mid range again but tsh 0.06….with threats that my heart and bones would be no good by 60. I am 43 now.

Anyway I’ve gone to PALS just last week with it as it’s wrecking my life. Consultant agreed (after I submitted research from thyroid uk, and my results from past 3 years to PALS) to up dose back to the 4 and 3 and tsh range to be 0.3-1, but hasn’t put this in writing so I am currently fighting to get it in writing. I’ve also asked for my tightly restricted prescription to be relaxed as I know if I need to slightly increase or decrease dose I’ve been doing this for 8 years! So stressful. I would recommend taking your case to PALS, they were really helpful.

[Inaquandary in reply to Hidden]

There’s no way I could function on 100 mcg a day. Why don’t you try adding a sneaky 25mcg on alternate days and see what happens?

[Shellian in reply to Inaquandary]

I am also thyroidless and have been on 100mg the whole time (14years). In winter I become really sluggish and although my recent blood results were in normal range my T4 had dropped. I rang the endo's secretary and asked her, to ask endo if I could try an increase. Surprisingly, he agreed! He has prescribed 125mg per day.

However, I feel that may be a bit too much so am starting slowly by taking an extra 25mg every 3 days. After only two weeks I think I can feel a bit of a difference in that I am not as breathless going upstairs or up hills and have a little more energy and motivation.

Good luck to all. So often it is so difficult to feel heard and to have how we actually feel taken into account.

[Hidden in reply to Shellian]

How have you managed??? Poor you. My sister (no thyroid either) ups her dose through winter by 25mcg extra a week to 125x5 and 100x2 then drops it when the warmer weather comes. Her gp just gives her what she wants lucky her

[Shellian in reply to Hidden]

That's a good idea to begin it as it gets cold. I'll see how this increase goes then maybe drop down a bit if ever gets hot and sunny for a periodof time. Thank you for replying.

[Batty1]

I have yearly thyroid scans and twice yearly Endo visits but beyond this Im pretty much left to go it alone issues and all… sadly

[Hidden in reply to Batty1]

Can you ask gp for more frequent blood tests? Then ask for increase in dose? It’s terrible how people are just left

[Batty1 in reply to Hidden]

My GP won’t touch my thyroid with a 10 foot pole (her words) because of my cancer diagnosis and actually she probably would stink at that like everything else.

[Hidden in reply to Batty1]

I’ve totally lost faith my our gps too. you never see the same one anyway, no good when you find yourself in this kind of situation

[Hidden]

Definitely, but my consultant restricts my prescription so badly as I can only get 100’s. Last year my gp upped my dose and said we had to prove my health improved with increased dose. But consultants over rode it saying my tsh was too low, he ignores t4&3. So gone to PALS as fed up. My next door neighbour said she could give me some 50’s as they don’t check up on her and she could do what she likes?! So inconsistent