i want to know from people who had total thyroi... - Thyroid UK

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i want to know from people who had total thyroid surgery if their quality of life

joannagof profile image
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is better after their hormones got balanced and they have their dose adjustment?did the hair loss stopped?do you feel good (like no brain fog or mixed emotions or weight gain and fatigue)

is life going to be better once your find the right dose?Its been 3 months and people say i should feel better but i dont. they thin i m overreacting.i still need more time and i still recover but i have my upside downs.fatigue is the worst.

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joannagof
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Clutter profile image
Clutter

Joannagof,

You're not going to feel well while you remain under medicated. You need to persuade your doctor to increase dose until TSH is <1.0 with FT4 in the upper range and FT3 in or near the top third of range.

Once you are optimally medicated your hair should regrow and fatigue and other symptoms improve. It was almost 2 years after thyroidectomy before I was optimally medicated because I didn't know better.

I don't have the same energy level I had prior to thyroidectomy and I lost weight I could ill afford to lose on Levothyroxine.

clare10 profile image
clare10 in reply toClutter

I had a total thyroidectomy just over a year ago, i personally feel so much better but only after having private bloods done and found out that my B12 and folate was low now being treated, 3 months is still very early in recovery i was a year on when i felt as if my body was settled, wishing you all the best.

mrsm49 profile image
mrsm49

My TT was dec14. I dont feel im optimally medicated yet but im better than i was and coping. A year after my TT i realised i needed b12 and thats helped alot. You need to get all yr bloods done and post results here along with ranges. I felt dreadful for first 6 months and even had to give up work. I didnt know what i shld be fighting to get tested at gps then. This site is invaluable for help and info.

Dont forget a TT is classed as a major operation so thats a shock to yr body in its own right. Take things easy

SilverAvocado profile image
SilverAvocado

I agree 3 months is short. Even doctors were telling me it takes a year to recover, and I think they are notorious underestimaters.

I'm four years past mine, and am starting to slowly recover now I'm self-medicating.

I had thyroid cancer, and thyroid cancer survivors have one of the worst quality of life scores of any cancer. Medics always act clueless about this, as if no one knows why. But I think it's because of the thyroidectomy, being dependant on thyroid hormones is just a hit and miss game. Especially if you rely on doctors to fix you up!

As others have said, post your test results in a new thread and members will advise you.

LAHs profile image
LAHs

Hi Joan, Yes, you are going to get there! I had a Total Thyroidectomy (TT) and eventually I got back to normality. You have to read up on what your body requires - T3, T4 and all the other minerals and vitamins that you will need to keep the conversion (of T4 to T3) going - it's the T3 you are after, you have to keep that in the higher end of the range as explained above. Doctors are not very well educated on the chemistry of all this so you will probably be on your own and have to try things out and, at first, pay a little more than you would want on private blood tests. Once you are stabilized you will not have to have probably more than one private blood test per year (unless you change things). The doctor will offer blood tests but they only look at TSH and total T4, which tells you nothing except for the very macroscopic diagnoses, and it's very good for that, e.g. if one turns up with a TSH >3.0 your symptoms will be due to hypothyroidism so examine the thyroid.

You usually get just T3, Cytomel, after a TT, that suppresses TSH so that no old thyroid cells grow back (to avoid the cancerous ones growing back). I stayed on Cytomel for 3 months and felt great. Hang in there, read as much as you can, ask questions here and you will get there.

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