Advanced search

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention; if you think your problem could be acute, do so immediately. Even qualified doctors can't diagnose over the internet, so do bear that in mind when seeking or giving advice.

Levothyroxine/TSH advice after TT

(12 Posts)
LostMyBloodtThyroid Sun 07-Apr-13 20:59:33

I had a TT last year for a small, noninvasive follicular tumour. everything went well post op, but I just haven't felt quite right since. My surgeon said that most people felt well with a TSH of around 2, and that's what he aimed for. However, my surgeon discharged me to the care of an endocronologist when I was three months post op, and my endo says that's too low and wants me to be about 5, which I currently am, with a T4 of 11. I know this is something I need to sort out with my doctor, but I'd be really interested to know what TSH level other people on levo feel well at. I'm just so tired all the time and I feel my brain has a time lag on it.

digerd Sun 07-Apr-13 21:24:00

It is different for everybody. 5 is the highest limit and am surprised the specialist told you that is what he wants you to be.

I am 4.8 on 50mcgs of Thyroxine daily, but am quite old and have a heart problem.

If you feel tired and your brain a bit sluggish , it would suggest you are underactive and your Thyroxine dosage should be increased imo

LostMyBloodtThyroid Sun 07-Apr-13 21:33:17

Thanks smile. I'm currently taking 100mcg (cut back fom the 137mcg that my surgeon had me on). Endo gave me a lecture about 'everyone thinks they need more thyroxine than they actually do' and that he considered me bang on normal with my current level, but I'm feeling disheartened at another 8 weeks like this before a re-test.

catpark Mon 08-Apr-13 13:00:48

Were about are you. is it uk ?

i had a total thyroid removal due to cancer and I was told to keep the cancer from returning my TSH must be kept as near to 0 as possible to prevent any cells left reproducing. So it's odd if you've had a tumor they are letting your TSH be 5 ?

Your T4 count is too low at 11. Most endocrinologists want to keep it around the 16 mark (Range around 14 to 22)

You should rally go back and discuss things with them or change your endocrinologist.

If your not on enough you will be tired all the time and the weight will creep up and it is harder to shift.

digerd Mon 08-Apr-13 13:43:28

Was your Thyroid totally removed or just the tumour and part of the Thyroid.?

LostMyBloodtThyroid Mon 08-Apr-13 15:45:27

Catpark - I'm in the UK. Digred - it was all taken out. My endocronologist keeps saying that everyone WANTS to think they are hypothyroid, but they usually aren't, and that there are cardiac risks to taking too much thyroxine - which I understand, but my surgeon put me on 137 expecting it to be raised, not lowered, as he said I'd feel much better with a low TSH. Feeling a bit glum about it all, tbh. I felt so well initially, now 6 months down the line feeling worse. I was euthyroid before surgery, and my TSH then was 1.5, so its now much higher than I'm used to. Endo also suggested I hadn't been complying with treatment for my T4 to be 11, but I've never missed a dose in 6 months. But I don't think he believed me. sad

digerd Mon 08-Apr-13 17:33:51

Your Endo sounds ridiculous. I'd change.

My sister became Hypo after the birth of her 2nd DC. She still had her Thyroid but it was producing too little. She was started on 150 mcs of Thyroxine - over the years it has been reduced to 75.

I do not know how much Thyroxine people take who have had a total Thyroidectomy, which you have had. I assume it is different for everybody, as with most things.

But for your endo not to believe you have taken it as prescibed, as it doesn't equate with his theory about your needs is outrageous. and arrogant.

T4 is too low, he has admitted, and all your symptoms prove you must take a higher dose of Thyroxine.
Please change your endo specialist

digerd Mon 08-Apr-13 17:52:26

Just found on a website that 150mcgs of Levithyroxine are usually given after a total Thyroidectomy when pre op patients euthyroid, which you said you were.

RockinD Mon 08-Apr-13 19:44:09

catpark speaks the truth. A TSH of 5 and a FT4 of 11 leaves you extremely hypothyroid.

There are cardiac risks to being hypERthyroid, but you are a long way from that.

Go back to your GP and ask him to find you an endo who understands the specific requirements of someone who has had thyroid cancer.

notJenkins Mon 08-Apr-13 19:49:10

I had my thyroid removed in January due to papillary thyroid cancer.

After my radioactive iodine treatment I have been put on a dose of 150 mcgs of Levithyroxine. I have only been taking that amount for 3 weeks and feel fine so can't comment really but will keep an eye on this thread as my levels will be checked soon.

MsBuzz Mon 08-Apr-13 19:57:15

I had my thyroid removed about 20 years ago (due to growth - goitre). I was initially on 150mmg and this was reduced to 125mmg after a couple of years. It was then reduced to 100mmg after another couple of years and I have been on that ever since. Not sure what the results of my annual TFT's are but I have felt well (except for unrelated illnesses) ever since.

HazleNutt Mon 08-Apr-13 20:22:41

I had TT and my TSH is currently kept at 0,1, this is what I need to have T4 within normal range. I've read many studies where they recommend that TT patients should be kept around TSH 1.

Join the discussion

Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Register now »

Already registered? Log in with: