Total thyroidectomy but feeling no better :(

[megaliz]

i had a total thyroidectomy in july due to the large amount of nodules on it. All my blood tests had come back "normal" but having seen a consultant he wanted to remove it due to the amount of nodules. I had been feeling unwell for a long time, mainly severe tiredness and thought the op would solve alot of my problems but it hasnt. I feel as unwell as i did before and having had my bloods checked these are once again "normal", i am on 100micrograms of levothyroxine and am putting on weight fast! wondered if anyone else is or has been in the same position as me ? any advice much appreciated x

[helvella Administrator Thyroid UK]

First piece of advice is almost always the same: Get your actual blood test numbers and do not accept "normal".

You are fully entitled to these results and should be able to get them simply by asking your surgery. See here:

thyroiduk.org.uk/tuk/NHS_In...

100mcg might just be enough for someone who weighs 62 kilograms - unlikely to be enough for those who are heavier or who have any impairment of absorption.

Rod

[Tatty10]

Hi similar situation i had a tt 4 weeks ago for toxic multi nodular goiter for the 1st 3weeks after op felt great lots of energy skin better just felt good, last few days symptoms are slowly returning tiredness puffy face aches and pains also on 100 micrograms of levo and my weight is 85 kilos so maybe i just need more levo?

Linda

[megaliz]

Thank you both for your replies. I am due to see my doctor this week so will ask more about my blood tests. I don't really understand about "actual blood test numbers" but intend to ask!

I am going to ask for an increase in my levo to see if it makes a difference! Doubt he will give me any increase tho :/

[Jane104 in reply to megaliz]

Ask your doctor for a printout of your results 'for your own records'. It should have your actual levels and the ranges for the lab that did the test. You will then be able to see where you sit in the range. If you post these in a new question someone will try and interpret them for you.

[France1]

I had my TT in January and I'm still struggling - I was unable to take much Levo (palpitations) and after trying more was reduced to 112.5 - I am 5' 11" and about 90kg - so not much T4 compared to most people. I never felt well. 5 weeks ago I was put on 100 T4 and 25 T3 (combination tablet) for 3 weeks I felt so much better and thought the future looked better. Over the last week I have got more weary and achy and my brain fog is back, depressed and anxious. Just got blood tests back and it shows TSH virtually not recordable, T4 only mid-way on the scale and T3 near the top of the scale. So I have no idea what that means.

I think that this is going to take much longer than any of us wish. I am also now convinced that life will not ever return to the a proper normal.

[Flowerpower_nafas in reply to France1]

I agree with all you have said. But trying to be positive for the long haul. Good luck x

[RonnieG]

Only thing I can say ladies is hang in there. Took me 2 1/2 years to get back to really feeling me again. Not saying that to make you feel it's a long haul, just mean persevere and you will feel better. I'm only on 75mcg levo, 5ft 6 and 13st 6 - 2 stone over where I used to be but everything is on the up as I've lost 7lb in 3 weeks. When it all clicks it's like the sun shining again. Differing brands of levo can make a difference, there are 2 I can't take and trust your instincts with your own body. It isn't the same as it was before so you may have to experiment with foods etc to find what works, but it will. Hope some of my waffle made sense and good luck. Xxx

[Flowerpower_nafas in reply to RonnieG]

Can you identify the brands you can't take on here? I would be interested to know what they are. Thanks x

[Flowerpower_nafas]

Just to say that I'm having same problems as many. I had TT if February and one of the 1% who have a severe reaction due to low calcium and vit D. Hypo calceamic on 4 occasions. Now with same symptoms as everyone else. Numbness & tingling in toes, aggravated sciatic nerve which has improved after seeing Physio, aching bones and muscles. The very worst thing is burning sensation in lower legs & feet, which I can ignore during day but keeps me awake at night. Never had any of these things before TT. I can go with and put up with other symptoms. My Levo has been increased from 100 to 125 daily. I am taking all the supplement recommended for everything and have high levels of B12. THS and T4 are high. Surgeon says it's takes up to a year or more for Pituatary gland to recognise the different changes in the body and for everything to click in. Why do they never tell you any of this? GP has referred me to an Endo. Waiting for appointment. I'm 67 and also despair of ever feeling well again.

[elsaba]

i think what is realy bad about thyroid diseases that doctors take normal blood test numbers as a guide for the dose . i am wondering if there is way to combine normal ranges with the symptoms to adjust the dose not dealing with just mathematical numbers