Thyroid removed and questions about Levothyroxine dose.

[LesleyLittle]

Following my complete thyroidectomy in Feb'19 I was informed I had Follicular Thyroid Cancer. Well not keen to take chances I opted to have my left side removed. Right side had been removed 35 years ago as it too had a nodule but this caused me to have hyperthyroidism. Now down to my question 😉. I've been placed on 150mcg of thyroxine daily. As I've gained weight during the 3-4 years this has been going on - how do they know this is the right dose for me? Any ideas please?

[Hidden]

Hi LesleyLittle,

I’m sure your decision to have a complete thyroidectomy was a wise one, given your previous medical history.

There is no hard and fast rule on dosage for most medications. They are usually based on the recommendations of the drug producers, who will have researched thoroughly before the medication can even be licensed for public use. The recommended dose will fall between one that’s too low to be effective and one that’s dangerously high and causes side effects or even harm. There’s usually some room for manoeuvre in between the two, for the individual, based on trial and error when taking the medication. Doctors refer to this as ‘titrating’, (adjusting) the dosage.

In your case it might not even be the dosage you are taking but that the thyroxine generally causes weight gain. So even if it’s possible to reduce the dosage, that might not help you, unfortunately.

However this is always up for discussion with your health professionals.

Medication use should always be a part of a two-way discussion. Clearly you have no choice to stop your thyroxine but it’s well worth mentioning your weight gain to see if anything can be suggested which would help.

Very best wishes.

[Gambit62]

I would suggest that you repost on the Thyroid UK forum

healthunlocked.com/thyroiduk

I presume that your GP is using TSH to manage your levels - its a bit of a blunt instrument and is actually measuring what your parathyroid glands are doing in response to levels of thyroid hormone in your blood. There is an element of needing to listen to symptoms with levo treatment that doesn't really seem to happen these days.

In general terms levo dose is determined by patients weight but there are other factors such as absorption can mean this varies quite a lot so it is only a rough guide.

[FredaE]

they will do blood tsts to check yoour ,evel I was started off on 125 perday every day but the test a year later said it was too high and i now have "two pill" days with 125 on Tesday and Saturday and "one pill "days the rest of the week at 100. there is no smaller pill available.to create a smaller daily dose

A friend of mine withan overactiv thyroid optted for radio therapy but she needs more frequent testing as there can be some regrowth whi ch why I opted to get rid of the thing. Luckily there was no malignancy - just over growth. Having been both over active -hyper- and under active - hypo--I can say that I can happily put on weight with either. I think weight is only affected by extreme imbalance

I am totally happy with no thyroid and replacement. Just forget about it except first thing when I need to remember pill... mind you it is slow to makea difference if you forget. They lowered my dose too fast and it was a fortnight before I realised why I was feeling wrong and since a non-urget GP appointment here takes 4 weeks I adjusted the dose myself and reported back at my next visit Good luck

[Cann]

Go by your gut feeling. My neighbour had hers removed years ago and doesn't take anything. When she went for a medical check-up the doctor said that she must take something if she had her thyroid removed, but she confirmed she takes nothing and he couldn't understand it. She is heading towards 80 and active!

[bantam12 in reply to Cann]

Your neighbour couldn't have had a total thyroidectomy and continued to live without replacement, just not medically possible, without some form of replacement a body simple cannot survive, she must have some thyroid tissue left that still functions, this would show on her thyroid blood tests.

[Cann]

I can only go by what she told me. Her doctor said she was a medical impossibility, but who knows!

[FredaE]

I think her Dr has not looked properly. Either enough tissue was left behind or there was a bit of extra thyroid tucked away in there out of sight. Either way if it works don't knock it. I personally can't judge my dose unless it is well out. Too high is not good for your heart although it can mean more energy but it also can give you osteoporosis - If you pefer a short life and a merry one then thats your choice - in my opinion at least.

[KirkWinguard]

My wife was on 100 a day but recently reduced to 75. We are getting tablets that size without difficulty so try again if you need to.