Total TT 7/12/13

Hi, I noticed a lump on my neck about 11 years ago I had it scanned at my local hospital and was told its a groiter nothing to worry about so forget about it, so I.

About September this year I started to get very tired, could not stay up after nine and my body would hurt like I had the flu, I would get a dry mouth and blocked ears and my head would feel dry. At the end of September a friend took a photo and I noticed the lumps on my neck, there was now two and the first had grown. So went to gp and said I wanted them taken off, and in passing told her of my other symptoms. By that afternoon I had an appointment with an ent (hubby has insurance) for the following week. I had blood test and my thyroid function was normal, so had a fna and that came back as a level 3 so was recommended a full TT just in case of cancer. So I had it done on the 7/12/13. Today I went to see my surgeon he said he thinks I've had thyroiditis for years and that my results for cancer are still inconclusive so a sample has been sent to a London hospital. I hope to find out before Christmas but I'm not holding out.

Since the operation my energy levels have been ok, but my hair and skin is now greasy. My voice is a little weak, as the op was tricky should have take 45mins took 2.5 hours! But it is getting better. I also at times get very cold.

I've been put on levothyroxine 100 micrograms.

This has all happened so fast I'm not sure I've taken it all in yet! Any advice would be very helpful xxx

18 Replies

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  • You'll still be getting anaesthetic out of your system and levothyroxine will just about be kicking in. It'll be a while before you feel better. Be kind to yourself, eat well, exercise lightly and get plenty of sleep. 10+ hours if you can. Don't use any harsh products on skin and hair, being surgically hypothyroid tends towards dryness.

    I hope your results come through soon. I find hell is not knowing.

    My hemilobectomy was 7/12/11. Biopsy was positive for Hurthle cell carcinoma. 2 years in remission now.

  • Thank you for your reply, I'm glad you are 2 years into remission. My ent keeps saying it's very unlikely, then the next result comes back as inconclusive - I'm now going with I've got it then if I get good news I'll be pleased!

    I feel normal, so I keep having to tell myself not to do to much! I've got a total of 4 weeks off work as I work in a school do you think that would be enough? Xx

  • No idea :) Your age, fitness & healing process will dictate recovery, as will optimising your levo.

    Surgeon told me the entire healing process takes approx 18 months, with the majority of healing taking place in the first 4 weeks.

    Thyroid cancer is usually easily cut out. Optimising Levo is slow and laborious. Making sure your ferritin, vitD, B12 and folate levels are high in range will help healing and absorption and cnversion of T4 to T3.

    You could read up on radio-active iodine ablation. This may be recommended depending on the size of tumour, type of cancer and whether you are over 40. Personally, I'd wait until a cancer diagnosis is confirmed and concentrate on enjoying Christmas.

  • I had total thyroidectomy in November 11 due to large nodules on goitre. FNA results were inconclusive, and I was eventually (3 weeks after op) told that results were non cancerous. The wound healed beautifully, but the thyroxine dosage is another matter. Good luck with your recovery. Xx

  • hi- can you tell me how the op was. i too have to have a tt on 27th jan(shoud have been end Nov but was cancelled as due to sizeof the noduler goitre and the fact its gone behind my sternum a thoracic surgeon also has to be present incase they have to go in through my ribs/chest also. I am really scared and wondered how it was with recovery and pain ,size of scar and medication afterwards. It is really affecting my breathing.sleeping chokeing and coughing all the time so im hoping to feel better on these things at least (im also a bad asthmatic which doesnt help) How long were you in hosp,ive been told about 4-5 days and how are you feeling on the meds. Any info good or bad would be great xx

  • I'm fine. I've had no pain at all I was in for 3 nights as my calcium levels were low. Each day I feel better in fact today I've taken the children to school a 10 mins drive and done a few jobs at home. My scar is about 20cms long but very tidy. The only discomfort I get is like when you have a scab. My thyroid was pressing on my vocal cords (not that it gave me any problems) so my voice now is a little weak but it's getting better everyday. Good luck let me know how you get on xxx

  • thanks i will take care and have a good xmas

  • I was in hospital just one night (2 days). My biggest nodule had gone behind my collar bone. Op was fine...I was gone for a couple of hours. Scar about 10cm long, and was rolled like a sausage under the skin. Sausage took about 4 weeks to disappear, and I was left with a little line which looks like an extra wrinkle.

    I was on T3 for 3 weeks after the op, and had a racing heart, and found it difficult to sleep. Then put on high dose T4 225mcg. This was too much, and although the GP kept telling me I was medicated correctly, I felt like hell. So I've been gradually reducing my dose over the past 2 years. Now on 125mcg daily. Feeling better, but still not right. The op and the scar are nothing compared to the uphill struggle to get your meds right.

    GP doesn't understand how medication affects your whole body. Prescribed me Amitryptoline because of muscle and joint pain. Sent me to a rheumatologist, who says I have joint hypermobilty syndrome. They don't see that it's the underlying lack of thyroid and wrong meds causing the aches and pains and lack of sleep.

    If you have a good GP and good aftercare, you'll be fine...but mine was (and still is) crap!!

  • have you had your vit d3 checked i too was like an old lady hips joints and so knackered but had 2 vit d injections and touch wood all joint pain gone- just cant breathe sleep etc but hey

  • That sounds like an idea, but my GP will only ever test t4 and TSH. Nightmare asking for anything else. I get "the look".... She's been on the internet again - and then I get fobbed off with another prescription lol. I've just about given up, and am taking supplements now to try and help myself. Selenium, vita B, D and E. Time will tell. Xx

  • push it because it can also affect your calcium levels and protects your heart etc and its impossible to get from diet alone-its sunshine lol

  • I should be feeling great at the moment, then...I'm on holiday in the sun in Cape Verde!! I'll push it at my next review in April. Thanks. Xx

  • Hi...... I had a tt on the 25th November 2013 due to thyroid cancer.... I was in theatre for nearly 8 hrs and was then in hospital for a further 5 days, I did recover well but two weeks later another scan showed more lumps on the other side of my neck so I had another 5 hr op on the 23rd dec, but I managed to get home on the 24th (with my drain still in).... I've now got a scar from ear to ear but I say that's a small prise to pay for what I've been thru..... To tell you the truth it all hasn't been to bad for me I'm just on the long road to recovery and waiting for my radiotherapy treatment in Manchester...... Good luck with your op and try not to worry you will be fine

  • Thanks, my scar is looking really good. ATM I feel very good but early days so will see what the next month brings.

    I am finding that I don't fancy eating much and have to make myself eat (not so bad as I have a couple do stone to lose).

  • how was the TT im due to have one for a large noduler goiter in jananything you can tell me good or bad would be great

  • I had TT in june , apart from getting a seroma ( fluid filled sack on the scar site which I insisted they drained and after begging because they didn't want to do it they did in the end) all went well , I had 7 growing nodules on left and the right was removed 34 yars ago for the same reason. I started 100mcg then they dropped it to 75mcg and I almost fainted as I was so dizzy .. then I went back to 100mcg and 75mcg alternative days. Then I tried 75mcg again on its own and now it suits me best! Just shows how individual we are..here Iam without thyroid glands and feeling ok with 75mcg and some with both glands need 150mcg !

  • Just to say I'm doing ok, going back to work tomorrow. My skin is now back to normal, but my hair has started to come out when I wash it, I've also stated to have trouble sleeping. Any ideas? I've still not had my results yet regarding the cancer.

    Oh well better try to sleep as I've 20+ children to look after tomorrow and weeks of paper work to catch up on! X

  • Thanks for updating (my nodule results took 6 weeks - chase them) good luck tomorrow - I work in school too, only the office thank goodness! Don't forget you need an optimum dose of hormone to suit you - & those Vital minerals too - irons folate ferritin B12 and Vit D for starters - (Vit D, magnesium and vit K2 help calcium control - so I'm told anyway, and esp ferritin and/or B1 for hair loss - just in case it helps). J :D

    apologies your message wasn't posted today although it just appeared on my 'News feed'

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