Thyroid UK
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Total thyroidectomy few questions

I'm having my total thyroid removed very very soon, apprehensive but just want it over as I've a large multi nodular goiter its uncomfortable and needs removing.

Couple of questions please what is the recovery time from the op? How long do you usually stay in hospital for?

I'll be put on meds as itis a total removal, the nurse at my practice told me I would qualify for an exemption card for prescriptions as I'll be on medication for life as I'll have no thyroid is this correct? I'd not heard of that before re free prescriptions.

Also any tips on what best to treat the scarring with?

I'll update once it's over am nervous as I don't like hospitals and blood ! I can't watch anything hospitally on the TV!!

Thanks

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Hello, I had my thyroid and 59 lymph nodes removed last Oct due to cancer. I was worried, but it wasn't as bad as I imagined... I was in hospital four nights (I went private) and had radioactive iodine treatment 8 weeks later. I am still off work but that's because I have a physical job. Recovery is a good few weeks.

Yes free prescriptions forever now! You get a form from your gp and get a little card back through the post.

DO NOT use BIO OIL on your scar. It may work, but contains paraffin. I use SBC gels, vitamin E and Collagen. Everyone says it looks great.

Any other questions give me a shout x

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Hi and apologies for hijacking Snoopy's post... and wishing Snoopy the very best.

What is SBC gels, and what collagen do you buy?

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Hi... SBC gels are fab, they make gels for all sorts of skincare. Their bestseller is the Collagen gel. Available on QVC and ebay and amazon. They do sets of trial sizes so you can try them out. Their Propolis gel is also great for scars. Smells of honey!

Www.sbcgels.com

X

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Hi Lindsay - thank you for information. Had a TKR and have been using Bio oil as recommended by many people who have had this operation. It has been very good but was interested to know more about SBC gels as mentioned in one of your posts. Will now try the Propolis gel for scars... Thanks again. x

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Hi Lindsay thanks so much for the useful tips on gels I will look on Amazon. I'd been told to try bio oil but maybe that's not such a good idea .

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I wish I could post photos.. I would send you a pic of my scar now!

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Hi Lindsay I ordered some propolis gel from Amazon how long after your op did you wait before using the gel?

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Hi.. As soon as the glue dropped off and the stitches started to knit together. Was very soothing x

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Regarding "free" prescriptions - pretty much everything you need to find out is here:

nhsbsa.nhs.uk/exemption-cer...

If you have not received your Medex by the time you need to get a prescription, make sure you ask for an FP57 receipt:

If you need to pay prescription charges before your medical exemption certificate arrives, you can get a refund as long as:

you ask for an FP57 refund receipt when you pay (you can’t get one later)

the start date of your medical exemption certificate is the same or earlier than the date you pay for your prescription (certificates are backdated one month from the date that we receive your application - they can’t be backdated any further)

You must claim your refund within three months of paying.

The FP57 refund receipt tells you what to do.

And note that you need to be in possession of a valid Medex in order to tick the E box on a prescription. And it needs to be renewed.

Ask your anaesthetist if you will receive nitrous oxide (laughing gas) during the operation. If so, that depletes vitamin B12. Not sure of the best way of addressing that - but hopefully someone will know.

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For my latest operation (total knee replacement) I enquired about nitrous oxide (told them I was B12 deficient - but not sure they made the connexion... ) and was told I would not have that as would get a spinal injection for the anaesthetic... It also helps to recover much quicker from anaesthetic. Not sure if some operations need a different form.

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Thanks for this info Helvella...I'd no idea that this was the case when on thyroxine after a thyroidectomy

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Hi there, I had a TT 3 weeks ago for Graves’ disease. I was also really scared. I was in hospital overnight. I had a sore throat for about a week because of the breathing tube and a bit of discomfort in the neck area, I had paracetamol and ibuprofen every 4 hours once at home. I felt extremely exhausted for about a week but then gradually felt better each day. I was lucky to have my son at home who is on a gap year to help me with dog walking etc as I couldn’t have done this. I still feel tired in the afternoons, I’m not sure if I need my Levothyroxine increasing, I’m was discharged on 100mg and will see the surgeon for follow up next week. The scar itself is amazing, you can hardly see it. My surgeon used glue which was brilliant. I am left with saggy skin above the scar, which I didn’t expect but, I’m hoping this improves, and my swallowing feels tight but I think this is normal. If you have any questions at any time feel free to ask and good luck! X

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I had a TT four years ago. The surgery itself with a qualified experienced surgeon went fine. Stayed one night in hospital. Recovered with no pain meds in a week.

The far bigger issue is - I have struggled with Hypothyrpidism and med management ever since.. If at all possible have the surgeon remove only half or part of the thyroid. Having some thyroid will put you in a far better health position for the rest of your life. Remember thyroid hormones affect every cell in your body. It is far better to manage with some of your own body's natural hormines than total dependence on exogenous hormones.

All the Best.

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I had a nearly total thyroidectomy (hardly any gland left which has shrunk to "nothing" now) in 1980 for an enormous 4 nodule goitre... (but no scan in those days, pre-operation). It took me some time to feel better then and was put on thyroid replacement (levothyroxine!) afterwards.

Operation skills have much advanced by now. Try not to worry too much (I know easily said...) you will be alright and you do need the operation.

Very best wishes to you.

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Hi JGBH, thanks for sharing your story and your kind words. I'll feel ok once it's over it's just the waiting that makes me nervous but I am almost there.

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I had my TT in October 2015. I was in hospital overnight and then sent home. I was given pain killers and some cream to rub on my scar which healed quickly. I didn't use any painkillers and since I have joined this site and self medicate feel well again. Use an experienced thyroid surgeon, one with pleanty of surgeries performed each year. You may have slight problems swallowing for the first few weeks but this soon sorts out.

Ask about your parathyroids and find out if they are going to be repositioned somewhere in your arm or shoulder area, these are important for calcium production.

Here in France they always remove the whole thyroid and it leaves you with a level playing field knowing that you have no thyroid I think it's easier. You won't ever have to have the other half removed at a later date either.

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Thanks Bunnyjean it's nice to read a more positive story from someone. My surgeon is very experienced and performs many of these each year. I'll ask about the parathyroids too thanks for reminding me. I agree with you about the whole removal I was told if I only had a partial I'd be back again at a later date to have the other half removed, plus my surgeon recommended that to me as being the best course of action to have a total removal.

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The french doctors' thinking is all about prevention and trying to avoid a further operation. In my case it was papillary cancer BUT they only found that out post-operation after tests in lab... No scan in those days and they "did not think" (Yes, SO scientific!) it would be cancer... so they left a small portion of thyroid gland.... which they said would be risky to operate again if they had to remove what they had left....

As you can imagine this situation left me feeling quite unsure about my future... whether the cancer would develop further in the part of thyroid they had left and spread.... NOT clever. Much better to be totally without it in fact because they assured me the remaining portion of gland would shrink when I had enough thyroxine replacement in my body... So I wondered why they had left any at all in the first place... Because they had no idea, obviously, so nothing has changed really.

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When I found out about my thyroid problems I was in the UK and had just bought a house over here in France. In the UK they gave me a FNA but it was negative, however after having the TT only 6 months later in France they found 1/5th of the lump was papillary cancer so I for one am pleased it's gone!

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It is so worrying to see how bad the level of health care is in the UK... It is not safe, not really fit for purpose.

Of course, it must have been such a relief for you to have found doctors and a health care service that are competent. If only the NHS would learn....and change their victorian attitude...But as you know it's always the same here, "It's fine, All normal, You're discharged"... unless one drops dead!

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I'm another person that has not done well since my operation. I think if you're having it removed because of discomfort only, and no cancer, I would think twice.

Although many people do well afterwards, some do not. It may be as many as 80% who do well, but I suspect there are another large group who can manage with their normal life, but always feel much more tired and grotty.

I had mine in 2013, and have been disabled since. I am in bed most of the day and haven't been able to do things like wash or make food for myself. I've been self medicating for over 2 years, taking NDT which you can't get on the NHS, and improving a bit. My life is a lot more 'normal', but was told by a specialist this week I'm not ready for voluntary work, not even half an hour a week!

It's definitely an operation you can be much worse after. And you will always be dependent on doctors to dose and treat your thyroid, and they know very little about it. Make sure you're in a situation where both Levothyroxine AND T3 will be on the table after the operation, and that you'll be dosed by a specialist for several years, and not discharged straight back to your GP.

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It's more than discomfort its pressing on my windpipe and distorting it, its very large and I've no choice. I would not be having an operation unless vital and done the line I will be older and the goitre will be much larger requiring a much bigger operation through my chest. Sorry to hear your bad situation post op.

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Hi Snoopy23, apologies, I didn't mean to say you haven't given it thought, but just to do plenty of digging because doctors are very keen to whip out and destroy thyroids.

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No problem at all SilverAvocado. My doctor & surgeon didn't push me either way it was down to me once we knew the facts.

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I think I've had my subtlety switched off when I got out of bed this morning, as I'm trying to say these things more gently but not doing very well! Please imagine this all much more toned down.

Make sure you're including in your calculation that you may not be well afterwards, and may have to do things like reduce down to part-time working or give up exercise and active hobbies. Conservative estimates are that 20% of people will struggle.

Bunnyjean is mentioning other hormone replacement that is available besides the Levothyroxine you will be offered. If you don't feel completely well after, this forum is a great source of advice for how to tune your dose, or argue with your doctor to get T3, which is the second line of treatment the NHS are trying to phase out. Some of us end up buying our own and managing our own treatment by getting private blood tests, etc.

Please come back and let us know how you get on in a few months, because it's very useful to hear how people get on for their whole journey, and adds to the anecdotal information we can use to advise others.

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I agree with you to have the thyroid removed. I was just walking up a steep hill one day when my trachea moved so much to one side that I couldn't breathe. I am pleased that I took advice and had it taken away.

It does depend afterward on your attitude to getting well I was on Levo for only 8 months and felt so ill that I joined this site.

I asked question and read a lot and now self medicate and feel well.

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Thanks Bunnyjean I'm keeping an open mind about Levo and hope it's a success. What do you take as an alternative if you don't mind me asking?

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I went from Levo to NDT which I bought myself. I now take NDT + T3 together.

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Hi SilverAvocado

you story is very similar to mine since having my total thyroid removed. I went downhill fast and remained that way even though I increased levo to 150 - 200mg daily. I saw Dt Peatfield, he established that I had adrenal fatigue thus Levo wasn't converting thus storing in my body and making me toxic. He suggested taking metative 111 for natural thyroid replacement and Adrenavive to support adrenals. He has given me my life back. I can now hold down a pt job. Good luck.

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Some (esp those with no thyroid) need T3 (liothyronine) as well as T4 (levothyroxine) . There is also NDT (natural desiccated thyroid) which is a combo of t4/t3 from actual animal thyroid. T3 and NDT are currently very hard to get on NHS .

I had a TT for substernal multi nodular goitre in Dec 14.

Its been a steep learning curve for me since my op but this site and (if yr in the UK) a Facebook site called "UK without a thyroid" have been invaluable.

Make sure they keep eye on yr calcium levels in hosp and afterwards too as this is very important.

When home I used a kids gel cool pack (Mr Bump) wrapped in clean hankie on my neck to aid swelling. And take it easy , a TT is a major op so it'll wipe you out for while. I was off work for 4 weeks but some people take less just see how you go. Oh and take a bottle of water with you to hospital as both my sister and i (in diff hosps too) were without water all night due to staff shortages.

Take care x

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Good advice with regard to water! I also take a soft fruit like plums, and a bag of ready to eat salad for an overnight in hospital. Because there are no fruit or veg served!

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Hi Snoopy23. I had my thyroid removed 6 years ago after having a very large multi nodular goitre as you have. I was in hospital for 4 days, they have to stabilise you and make sure that your parathyroids are still there and functioning. After that it's just a case of your cut healing and then getting your meds right. Yes you will not pay for any prescriptions afterwards. Under active (hypothyroidism) do not pay, hyperthyoid still di

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Hi Snoopy23, i had my thyroid removed 6 years ago after a very large multi nodular goitre as you have. I was in hospital for 4 days, NHS. They have to stabilise you and make sure that you still have your parathyroids (4), afterwards it's just a case of your cut healing. I used moisturiser. Yes you get all of your prescriptions free. I was back at work within the week, although I did work in an office and for myself. Hope this makes you feel less apprehensive

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Hi I had my thyroid removed in June of 2017. It was outpatient surgery. I took two days off of work. Was put on 88 mcg of synthroid. It was too much so lowered to 75 mcg synthroid. The scar fades quickly. I’ve really had no problems. Good luck to you. However, I’m in the United States so I don’t get free meds for life like you do.

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How did you figure out that 88 mcg was too much? Did they test you right away, after the surgery?

I just had mine 3 days ago and put on Levo 112 mcg I think. Getting my stiches taken out tomorrow.

Only complaint so far is that my blood pressure is high.

Thank you all for sharing

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I went to my endo for new blood work approximately 6 weeks after surgery and I was very hyper so my dose was lowered. As of the last visit in January of this year, I was still slightly hyper, but feel really good so my doctor left the dose at 75 mcg for now. I go for new blood work every three months.

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Oh gotcha. I guess I have to wait as well. I don't luike feeling hyper at all. Makes my heart race, blood pressure up etc. I hope it just gets normal finally 😉 good luck to you

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They tested me 6 weeks after surgery. I go back every three months now for blood work and to see my endo. I’m in the US so maybe it’s different than th UK.

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Hi Snoopy, Me Too! I had a TT about 10 years ago. I was terrified but knew things would be worse if I didn't go through with it (I had thyroid cancer). I had one night in hospital, I have practically no scar (meaning I cannot see anything but my friend says that she can just about make it out). I had a sore throat the night of the op which then became a hoarness for a while (but I am now normal). Regarding medication you should really be on T3 only for about 3 months, after that you should try Levo because if it suits you life is easy. If you do not get on well with Levo - well, read on, you are in the right club!

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Hi Snoopy I had a total thyroidectomy 5 years ago, due to nodules and cancer, I was in hospital 8 days as also had traumatised parathyroids and had to get calcium stabilized. I belong to a Facebook group UK without a thyroid and got loads of support from there, many are only in hospital for a couple of days. I used organic coconut oil that I whipped with a hand mixer and added a couple of drops of essential lavender oil. Coconut oil is anti-bacterial and anti-fungal, it worked really well for me and my scar is now virtually invisible. Yes you do get free prescriptions. Hope it all goes really well for you, it is scary but you will be fine get plenty of rest after the op and also search for a leaflet on exercises post thyroidectomy, my hospital never gave me one but found one from here guysandstthomas.nhs.uk/reso... These really helped me as I found my neck and shoulders stiff.

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Hello Snoopy

I had a total thyroidectomy in September 2017. I also had it removed because of a huge goiter pressing on my windpipe. I was in hospital 3 days. I was amazed at how well I felt after the operation and had no problems eating or swallowing. My biggest problem was my voice. VERY low, hoarse and scratchy ( was told it was sexy :-) )but that started improving after a couple of weeks and is normal nowexcept that I can`t shout or sing!

I was amazed that I had hardly any pain, my wound was glued and is prctically invisible now. I just put normal skin cream on it after about a week.

I take Levo with no problems. Was on 75mg at first, now 90, think I could do with 100mg because of tiredness.

I would do it all again without hesitation. You just need patience as the Levo takes about 4 weeks befoer it finally shows if its good for you or not, or if it needs to be more.

Good luck, don`t be frightened , it will all be fine and you will feel a lot better, if not at first then after a few months

Eileen

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