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Thyroid UK
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pre op assessment - what medication after complete removal of thyroid

I'm having the pre op assessment on Thursday, seen the surgeon and he says complete removal is necessary as my thyroid is toxic (graves diseases)

I am very anxious about the op,plus having to be on thyroxine for the rest of my life.Has anyone found a natural alternative to this med, if so what, how does it work for you? I have found natural meds from pigs and Irish sea moss? Based in scotland uk

Thanks in advance and appreciate any help reassurance

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Firstly glad your having surgery not RAI

Are you on potassium iodide to enlarge the thyroid for the op ?

You are correct in thinking that Natural Dessicated Pigs thyroid after a thyroidectomy is often found to be better than levothyroxine

Certainly that is my husbands experience and many others

You are likely to have to source it and treat yourself though

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Hi, no i am no on potassium iodide,should i be?

I understand I will have to source the natural meds,where is the best place to buy it?

I want to find good professional site as I am new to all of this

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Maybe things have altered but for the week before my husband had his subtotal thyroidectomy he was given potassium iodide to enlarge the thyroid and make the surgury easier

Theres 3 NDT available from USA or Canada but they are pricey

Theres 3 made from same USP powder that are made by pharmecutical companies in Thailand which are affordable

How long have you been Hyperthyroid with Graves?

How long on Carbimazole or whatever ?

Any special reason why surgury was suggested

Have they discussed taking levothyroxine afterwards ?

You will find this forum and also tpauk.com probably know far far more than most GPs and endos ....theres only very few truly excellent endos in the UK sadly

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You wrote: Theres 3 made from same USP powder that are made by pharmecutical companies in Thailand which are affordable

It might be claimed that the source desiccated thyroid powder is manufactured to the same Thyroid USP standard (The United States Pharmacopeia is a pharmacopeia for the United States published annually by the United States Pharmacopeial Convention, a nonprofit organization that owns the trademark and copyright) but I don't feel it is right to claim it is the same powder. It reads as if the Thai companies purchase the powder from the USA and I don't think we have seen any evidence of that.

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Thanks helvella ...i had understood several times it was the same USP powder

Clearly you have more up to date information on the actual situation

Its a crying shame that the UK has not restarted making NDT but given current BTA attitude that levo is so perfect and Big Pharma prefer meds they can patent i cannot see it happening which for so many people is extremely sad

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No - I do not have any more up to date information. But it just doesn't seem very likely that Thai companies would be importing powder from the USA. I guess that it would be too expensive given their lower sale prices. Plus there were no obvious parallel supply issues when the USA makes had problems a number of years ago.

Do bear in mind that neither levothyroxine nor liothyronine are in patent and I don't think either ever was patented in the USA or the UK.

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I was diagnosed with Graves April last year, endocrine doc started me off with 40mg, t4 and t3 leveled, so they lowed the dosage to 20mg, then to 10mg then to 5mg, my t4 and t3s sky rocketed, went up to 40mg,still very over and in March this year went up to 60mg, my doc says my thyroid/body has become immune to carbimazole and producing even more t3/t4s and classed my thyroid as toxic, it is enlarged, i had a scan 3 weeks ago and there were large nodules on the thyroid too.

As my thyroid as toxic, the radioactive drink is not an option which I am glad as I have children and I do oncology massage.

Thursday this week with the pre op assessment, im hoping they will discuss after op meds. When I was the surgeon 3 weeks ago he told me to contact my endoc consultant, which I have done, but no response yet. I have received a letter yesterday from the surgeon saying i will be having the op before 30 August.

Thanks for your help x

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Hi Ladymadonn1 I had a thyroidectomy nearly 2 years ago due to graves (liver affected by Carbimazole so didn’t really have any options) also live in Scotland. I was started on Levothyroxine after surgery, they calculated dosage on my weight and it was adjusted over the following year. I have recently been referred back to the endocrinologist and am now on a trial of levothyroxine and liothyronine, and am feeling well on this. I didn’t have the iodine prior to my surgery and all was fine. There is a section on here on thyroidectomies and I think I read all the posts in the week before my surgery!

Like you I would prefer a more natural treatment and have a friend in the US who uses Nature Thyroid which sounds good. In the future I may try to source it but for now I’m keen to work with the endo to see the best I can get within the NHS system.

It does take time to gain energy after the surgery, although a little gland it’s absence is a big deal for the body to adjust to and the hormone replacement, so give yourself time to recover. Then it’s good to focus on getting your vitamins and minerals at optimum levels...lots of info on here and great advice...just ask!

Wishing you well with your surgery and recoveryXx

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thanks for your help :) i know i am going to struggle as i do not cope well when im struggling xx

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I don’t think the whole process was as bad I was expecting. I had a good surgeon who when he first met me told me how many thyroidectomies he did each year...before I could ask! And this gave me ab it of confidence.

A bit of a funny story - when I went into the surgical unit the nurse admitting me ...had a thyroidectomy scar, so we talked and she was reassuring....and fit and well to be working in a busy job! Then the anaesthetist came to see me.....and she had a thyroidectomy scar!! (By this time I was wondering if this was some sort of movie 😂 and we talked and I reasoned if she had survived it and continues to work as an anaesthetist ....I would probably survive!

Also although I’m trying T3 &T4 trial now I was managing well for over a year, then and possibly due to a very stressful and physically exhausting time due to a close family member dying from pancreatic cancer, I was struggling...but my GP listened and referred me back to endo....who listened....there are good health professionals out there as well , we don’t hear so much about them as the people who see them are busy getting on with their lives!

I still come back on here regularly as it was and is like a comfortable blanket which gives me ideas as to how make the best of my situation

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also did anyone discuss calcium levels after op?

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They check your calcium levels before you are discharged and I read up on what symptoms might be if they were affected, I think I was given a sheet of info on this to take home too. Surgeon told me morning after they were able to see my parathyroids clearly and avoid them.

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Ladymadonn1, could I just stress that levothyroxine is a synthetic hormone replacement rather than a medication and that many many people do perfectly well on it. :) Yes, some people don’t - and they tend to be the people who write posts on thyroid support forums like this one. We tend not to hear from people who are doing fine on levothyroxine.

So try not to guess how you’ll get on - it’s very likely you’ll be absolutely fine taking levothyroxine. NDT is much harder to get hold of, expensive(!) and many doctors are wary of it and can be very unsupportive of those taking it, because it’s a thyroid hormone replacement they know very little about.

To start with at least, be guided by your doctor/surgeon. I’m not saying that you shouldn’t take a keen interest in your blood test results, perhaps posting the results here to get our views on whether you’re optimally replaced - you definitely should - but this may not be as difficult as you seem to be expecting. Hope all goes well with the op x

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Hi. I had my Thyroidectomy just over 2 years ago. Surgery went well and scar healed quickly. Low levels of calcium afterwards which can happen and had calcium supplements for a while.

Was put on levothyroxine at 125mg to start. Have since had 100mg then 75mg then alternate 100/75 daily.

My only issues have been hair loss and weight gain. My GPS aren't overly bothered and I'm trying to change my dose to see if it helps with weight at present.

I take my meds on waking and tjink I'm lucky as some people struggle more than me. Don't get me wrong I do have some yuck days but not sure it it related to "thyroid" or menopause or both!

I'm more concerned with my hair loss and weight gain. If they weren't a problem then the niggles I have I can.cope with most days.

I hope all goes well with yours. I also had the Iodine 10 days prior.

If you need to talk further happy to discuss.

X

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Thyroid hormone are vital to life and are needed by every cell in the body. If your thyroid is removed, you must take replacement hormones or you will die (after getting heart disease, dementia and going into a coma). You cannot replace hormones with OTC supplements and sea moss. You could pay for your own Natural Desiccated Thyroid from pigs (NDT or DTE) but NHS will not prescribe it, although they are allowed to - you might be able to get a private prescription. That is the most natural alternative (Armour, Erfa etc).

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Just don't let them undertreat you after removal, which is so common with thyroid meds. I have read every package insert (online) that I could find by thyroid hormone manufacturers. The dosing info for levothyroxine for replacement of your own T4 thyroid hormone is 1.7 mg per Kg of body weight. Some need even more. This would put a 150 lb. person at about 112 - 125 mg. daily of levo.

You may be able to convert and make your own T3 from the T4 in levothyroxine just fine. Natural thyroid hormones are good and I have taken them, but because the T3 in them hits your system all at once, they cause energy peaks and valleys in some people.

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Sending positive vibes to you Ladymadonn1! I had my thyroidectomy 16 years ago following Graves issues and whilst sometimes I struggle to get my head around being kept alive by tablets, the surgery experience itself was not as bad as I thought it might be. My parathyroid glands were caught and the symptoms came on pretty quickly (had to alert the night doctor on my first night in) and it took a few weeks to adjust but then for a good few years until I had my children I was issue free. There's lots of support here but I hope you won't need it!

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Thyroidectomy here, cancer no RAI. It's been a long annoying hateful road for me. I started out of Synthyroid and not based on my weight here in the U.S. they love the lab numbers dosing me based on lab numbers and my going off on my endo after months of my body going nuts....yup going off. Currently on synthyroid and cytomel (T3) been ok not great though I've given up on getting great back.

Your going to have to speak up and put your foot down if you feel bad don't let anyone doctor or anyone tell you different and believe me they will tell you all kinds of crazy stuff to make you feel like your have no clue what's happening to you....don't buy it....speak up loud and often and don't be afraid to fire people and keep coming back here theses people have more knowledge then most endos.

Good luck!

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