Total Thyroidectomy

Hi, just been told today that I need to have a TT, being suffering from under active thyroid for the past 5 years and I'm now on 300mg of Eltroxin and just got my bloods back last week and my TSH is 53.95. I'm absolutely exhausted and I'm piling on the weight, I'm so nervous about the operation some say they feel worse after, not sure what to expect . Can anyone advise me on op and what to expect. Thanks in advance

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  • Hmmmm... Odd. Why would you need to have your thyroid removed if its not working? Have you been give any reason for this? You are already hypothyroid with a raised tsh and on a substantial amount if thyroid medication, which clearly isn't working for you. Removing your thyroid seems an unnecessary step.

    It would be worth you getting your free t3 measured.... The high tsh could be because the levothyroxine you are taking is not being converted into free t3. If the doctor won't do the test, you can get it done privately by dealing with the lab yourself. Details of tests are here:

    Low free t3 would give you raised tsh despite free t4 looking ok.....

    G x

  • Thanks for the reply, I've had a CT Scan and it showed that I've a few nodules, then 2 weeks ago I had a ultra sound to compare it to the one I had 4 yrs ago and that just showed that the goitre has got alot bigger, I do have trouble eating and drinking I tend to choke alot lately when doing both, so my consultant reckons it's best that I get a TT. I'm not sure about he bloods or the results I've never really understood them to be honest my FT4 is 9.6, so tha't just slightly low, but really don't understand why my TSH is so high, I have been having terrible trouble with the thyroid this past year, originally I started taking 100mg then over the past year it's been increased.

  • Your tsh is high because you don't have enough thyroid hormone. Slightly low just isn't good enough... The free t4 needs to be at the top end of the range in order for you to convert it into the useable hormone t3.

    As you are already on a good dose of levothyroxine, and its not working.... Maybe the endo should either give you some Liothyronine. ( t3). Or you could ask for Dessicated thyroid. Like armour, erfa or nature throid.

    g x

  • I suspect your body cannot convert the t4 in levothyroxine into the t3 your cells need and thus your TSH remains high and your free T4 is dangerously low

    I would point blank refuse a TT until you have a really full set of blood results

    Thyroid Antibodies

    Free T3




    Vit D3



    In your shoes I would insist on a prescription for T3 ..............not levothyroxine

    and because I am sure your ferritin will be at rock bottom and not above 70 as it must be you will need iron plus at least 500mg vit C for months

    I trust you are not taking iodine or kelp as this can cause a goitre in some people

  • Are you taking the Eltroxin on an empty stomach? With only water?

    Because it looks like you may not be absorbing it.

  • Yeah I take it first thing in the morning, on empty stomach with water ,i did try taking it at night but it never made any difference

  • But do you then wait an hour before taking anything other than water? And wait four hours before taking calcium or iron?

  • Yeah I normally dont eat much in the morning anyway, but I don't take any iron or calcium tablets

  • Hi,I had mine removed 3years ago I did not have a choice either would I have it removed if had a choice my answers would be NO.I am on 225 gm of Levothyroxine I get so tired as I only get approx 4 hrs sleep disturbed always tired and joints ache and at times sweat awfully .My life has changed from being very active to being going to bed when I get in from work as tired/ache .People don't understand I know have high blood pressure and cholesterol never suffered before of these and because I was under medicated I had to have a op for carball tunnel which I was told a system of not being medicated correctly.think carefully .

    All the best gill

  • Oh god. .. I don't have much of a choice tho. The swelling in my neck is getting worse, to a point it's uncomfortable laying down. I do have fatigue badly, I'm on high blood pressure tablets and cholesterol tablets.i was hoping that maybe surgery is the best option after the last few years trying to get meds sorted

  • Cholesterol tablets? Do you mean statins? Whoa.... Hold it.... They are not recommended with thyroid problems as the chance of muscle damage is increased.

    If you are hypothyroid, the cholesterol rises. It will go down when you get the correct medication.

  • I stopped taking the statins as I didn't have high cholesterol before my thyriod was removed g x

  • Bers, the high blood pressure and cholesterol are due to lack of thyroid hormones. So is the swelling of the gland.

    Removing the thyroid is not going to change the fact that you aren't absorbing the thyroid hormones. Instead of going on about the high TSH, they should be concentrating on why it is high. Why aren't you absorbing the levo that you're taking. The first step, IMO would be to take you off the statins which are a) not necessary - cholesterol is not a problem b) dangerous.

    Then consider how your are taking it - are you taking it correctly? Then ask yourself, do you have low stomach acid? The next thing to try would be straight T3, which you can take sublingually and therefore bypass the stomach, and straight into your blood Stream. If that doesn't bring down the TSH then consider a problem with the pituitary.

    There are so many things to take into consideration before jumping into a TT, from which there is not going back.

    Hugs, Grey

  • gill

    has your ferritin

    vit b12

    vit d3

    been tested because I bet ferritin is low hence why levothyroxine is not working

    most TT patients need NDT because it contains T1 T2 T3 T4 and calcitonin

    Certainly made a huge difference for my husband and he had a TT for graves and was never well on either levo or T3 but on NDT he is pretty fit for 72

  • Hi,my doctor has not said anything just changes dosage I feel so poorly I go from cold to sweating it drips off me and people say how ill I look I also don't sleep well which was never a problem before ,last November I had carball tunell ( not sure how to spell) and had a op on my wrist doctor said it was because I was under medicated .

    I did ask once if I needed a calcium test and he said no a little worried asking but I just want to be my old self again xx

  • your symptoms are simply very classic hypothyroid ............Go back to your doctor and INSIST on getting ferritin checked and a script for T3,,,,,,,,,,,,,,,its pointless taking levothyroxine because clearly your body cannot utilise it

    I watched my husband go through absolutely identical symptoms and he was well into myxodeama madness ............take this print out of responses to your doctor and take a friend or relative and refuse to leave till you get the tests I have told you to ask for and a prescription for T3 /liothyronine

  • Thank you I thought it was me and I just have to get on with it as that what happens having no thyriod I am going away for a week today but when I get back I will make a appointment and let you know how I get on .All I want is to be me again ! Thank you again and yes still have same systems in my arm but not as painfull and when I had my thyriod removed he damaged my vocal cords so I have a husky croaky voice . Thank you again xx

  • carpal tunnel is virtually always a hypothyroid problem ..........a friend was exhibiting all the signs of hypo inc carpal tunnel ...her GP insisted she had her wrists operated on ..........made no difference was months later when she finally remembered what I had said and forced her GP to face the issue of hypothyroid and I was proved right

  • gill

    has your ferritin

    vit b12

    vit d3

    been tested because I bet ferritin is low hence why levothyroxine is not working

    most TT patients need NDT because it contains T1 T2 T3 T4 and calcitonin

    Certainly made a huge difference for my husband and he had a TT for graves and was never well on either levo or T3 but on NDT he is pretty fit for 72

  • Hi Bers

    I had a TT in March due to increased swallowing and breathing difficulties at night. I felt much better as regards these symptoms almost immediately post op. I did have a sore throat and a stiff neck but it was not very painful, paracetamol worked well. It was great to be able to eat and drink without coughing and I now don't snore at night!

    Unfortunately my goitre turned out to be cancerous and I have had the normal see saw of sorting out the correct hormone replacement, but the surgery was not a problem and I didn't realise how much discomfort I was in until after my thyroid was removed.

    I have a small 5cm (2inch) scar which 6 months on is almost invisible. I now have a smaller neck and can wear necklaces and shirts that were previously too small.

    I hope all goes well for you


  • Sorry it is not a quick fix yes it sorts the throat problem out 100% but as I said its after I am still not on the correct dosage I go every 6 months and it changes each visit I have tried taking half in morning and half in evening no difference weight goes up and down .I can certainly say I didn't know how much a thyriod does for our body's .I also get very emotional when dosage not right . My one wish is to be my old self again !!!!!!!!! Having fun and busy and laugh a lot sometimes my old me comes out but on the main I am so so tired and ache I just rest in bed ( what a waste ) Good luck xx

  • It is not an operation to be taken lightly and it's not the doctors who have problems after an op. It is the patient and there is no going back. Of course if anything is cancerous they must do so. I will link you to a member who has gone through an experience - not to frighten you but to be aware.

    You should be having much more meds to bring your TSH down as it is obviously too high. Galathea has made some very good suggestions.

    There are also lots of good info in the right-hand column.

  • I would just say explore all options with an effective dose of replacement before opting for TT. Since my TT I have been told by several Drs that if I had been put on an effective dose of replacement prior to TT it may be that my increasing nodules would have shrunk or at least stopped growing and avoided the need for TT. I realise that sometimes it is the only option but feel Drs are too quick to remove. Although my swallowing/choking etc improved post op it has not gone completely and is very definitely dependant on meds which are still not right. I don't want to put you off but just be very sure it is the only option. I am always wary of posting as my experience has been so bad but I know others fare much better. Good luck, I hope all goes well for you.

  • yeah having it out is the worse thing you could might have to be on 2 different meds to keep it under control. it still can go out of wack.i had to change the way i eat because they wont take mine out and it seems to be working for me, im loosing the weight. good luck

  • Hi Bers,

    I'm really sorry that you are having such a rotten time but I'm not sure if a TT is absolutely necessary when you are hypothyroid, plus, goitres come and go. I was diagnosed with thyroid cancer 18 months ago and had a partial thyroidectomy to remove it but prior to the op I was told I had a goitre in the left lobe of my thyroid. By the time all the investigations were done the goitre had gone. The ultrasound dr told me that they come and go and I'm just wondering if your diet could be making your problem worse. At the time I was unaware that certain foods contain compounds that make goitres in some people. I was eating quite a bit of cabbage and other brassica family vegetables for my B vitamins and I stopped eating these and the goitre had gone. Perhaps you should look at the thyroid uk website for a list of foods to avoid. Also, greygoose on this forum has made a really good poster/list of foods to avoid.

    Good luck and I hope you come to right decision for you.

    TT xx.

  • I think you can have nodules and goiters removed without removing your thyroid. Do you know at what level your thyroid IS working? There is also a danger of losing your parathyroids which regulate calcium when they remove the thyroid gland. They should not force this surgery on you.

  • The best advice is to visit site. Experienced people on there will help.

  • I had Thyrectomy in 2005 because of Pre-cancerous nodules. I have since learnt that it was probably not necessary but the reason I was not functioning well was B12 deficiency and also my D3 was low even though I live in Crete! If your Dr is not willing to give B12 injections more than every 3 months which I believe is the case in UK may I suggest you get from Amazon B12 patches 5000mg. I can get injections here over the counter here but find the patches work well too. The operation by the way is a very simple procedure, but after finding out the B12 deficiency and taking supplements I feel so much better, lots of energy. I take 100 Euthyrox Thyroxene in the summer months and 112 in the winter.


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