Thyroid UK
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Should I remove my thyroid (total thyroidectomy)?

My new doctor strictly recommended me to remove my hashi's thyroid. There's not many left already. I'm suffering almost 30 years from my thyroid disfunction. Please share with me your experience. Is it really beneficial?

51 Replies
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I would only let someone remove my thyroid gland if they promised I could also have T3 alone (forever) or T3added to T4 (levothyroxine) or NDT (natural dessicated thyroid hormones). T3 is known as liothyronine.

NDT in the UK is now not prescribed due to False Statements being made about it by the BTA. It is the very original used in different forms since 1892 up until a couple of years ago. It contains all of the hormones a healthy gland would produce.

thyroidscience.com/Criticis...

Others who have had a thyroidectomy will respond. I have my gland an am hypo.

There are quite a few past posts:-

healthunlocked.com/search/t...

It is a big decision for you to make.

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Unless you have thyroid cancer, or are out of control hyperthyroid, I really don't see the point.

A dying thyroid won't do you any harm in itself, it's the lack of hormones that will do you harm.

I would not have this operation without good reason.

I suspect you are not in the UK.

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Hello Shaws

Here is a little bit of info which I learned many years ago in 2003 when first diagnosed as being hypothyroid, at which point I did extensive research into the subject. It may or may not be true but it certainly wouldn't surprise me.

Apparently, when a remedy for Hypothyroidism was needed, the medicine was harvested from very freshly deceased human cadavers, dessicated and preserved and given to those who needed it.

It was only as recently as between the wars that the thyroid was harvested from pigs and remains the same today. ( I speak of NDT of course).

Unfortunately I have been trying to remember my source, to no avail but should it all rush back into consciousness I will let you know.

Hope you enjoy that snippet which reinforces my pleasure at being born in this era and not the mid 19thC !

😲

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In the west the first successful treatment of hypothyroidism was with sheep thyroid.

jameslindlibrary.org/murray...

en.wikipedia.org/wiki/Georg...

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This is also an interesting history. Excerpt:

One of the first references to the thyroid gland in Western medicine is in 1656, when it was thought that the main function of the thyroid gland was to lubricate the trachea.[1] It was also believed to have a cosmetic function in women. Paintings going back to ancient Egypt often emphasize the size of the thyroid gland in women. In the early 1800s, the thyroid was thought to be a vascular shunt to divert the blood flow from the brain. In 1811, cancer of the thyroid was the first disease of the thyroid to be described

medscape.com/viewarticle/43...

This is an excerpt from link below:

Up to the middle of the 19th century there appears to have been no knowledge of thyroid biology but much speculation. That the thyroid must have some important function was suggested by its very generous blood supply. Some wondered whether it functioned as a vascular shunt to prevent sudden rushes of blood to the brain – a neat idea! Others thought it was involved in voice production by some facilitating, perhaps lubricating, action on the larynx. Indeed, the two thyroid lobes had originally been called the laryngeal glands. But Frederik Ruysch, anatomist in Leyden around 1690, adopted, according to Albrecht von Haller in 1766, the ‘only possible remaining opinion, namely, that a peculiar fluid was elaborated in the gland and poured into the veins’ (Rolleston 1936; Singer and Underwood 1962). The 19th century thus began with thyroidology at best in embryo; but during that century endocrinology was born and the thyroid was its standard bearer.

jameslindlibrary.org/articl...

The fact that people had cretinism is awful and thankfully it can be avoided today.

en.wikipedia.org/wiki/Creti...

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Interesting stuff, thanks Shaws.

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That's really interesting Shaws because when my Graves was at it's worse (in November) I found couldn't sing along to a CD of Christmas sounds high notes were out then I went to a Carol service after my treatment finished (almost exactly a year later) and discovered to my great joy that not only could I sing but I could even do the descants so perhaps that was why doctors thought it was linked to the voice.

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Hoarseness can also be a symptom of hypo which should resolve when on replacement hormones. I'm glad you found your voice returned.

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shaws

This is a very interesting article about thyroid disorder using a global perspective on knowledge and treatment. It goes back quite some way into antiquity:

ncbi.nlm.nih.gov/pmc/articl...

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PMRandRA

This detailed article makes no mention of human cadaver thyroids being used for NDT. I wonder where you read it.

ncbi.nlm.nih.gov/pmc/articl...

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As I said it was in 2003 that I found the article. I was, at that stage, pre internet so it was probably in a book. Don't worry, if I find it again I will let you all know.

😲

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Hi

Good answer! No way without assurances. I think half my avenue have thyroid issues and there is not a week someone does not mention a problem. My two immediate neighbours have had theirs removed and struggle more than they did previously. That said they are only given t4. I'd say it took a year to be settled ( ish) and now they are undermedicated. They both had hashimotos. One had RAI and she regrets it. She had no meds for 14 days - ( the protocol here why I live) then was plonked on 200 mcgs of thyroxine and levels keep changing constantly-I've made suggestions to them following blood test but they are scared to go it alone and self medicate.

I can only say a poor thyroid is better than none. The grass is not always greener and you'll be in the same boat - you have a thyroid problem.

If you're in the uk you'll have to source your own, preferably, ndt as you'll just be given thyroxine. If you're abroad it may be different i.e. like USA.

Good luck to you but ask what next first.

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Tell your two neighbours to get a Full Thyroid Function Test, TSH, T4, T3, Free T3 and Free T4.The two most important are Free T4 and Free T3. You can see from the following link why:-

thyroiduk.org.uk/tuk/testin...

They should get the earliest appointment, fasting and a gap of 24 hours should elapse between their last dose and the test and take afterwards.

If they are on insufficient levothyroxine (inactive) to convert to sufficient T3 (the only Active Thyroid hormone) which is required in our billions of receptor cells - needed to raise our metabolism and make us feel much better. It can either be done by raising T4 but if not a good converter T3 should be added.

It is no good having a half-life but doctors or endocrinologists seem not to be aware of how important T3 is for our complete wellbeing.

The professionals need to start from the beginning again and know about all clinical symptoms and make sure the patients' symptoms have diminished through good doctoring and not by looking at a TSH result alone and telling them they are in the normal range. That is only for people undiagnosed, not for those diagnosed when the aim is a TSH of 1 or lower or suppressed.

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Thanks

It's like dragging a horse to water!!

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Yes :) probaby but you can only recommend :)

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Hi I had a total thyroidectomy in Jan 2016 due to hashimotos, I was extremely poorly and basically felt my body was beginning to shut down, there were days when I would be crying just to get out of bed and I had every symptom going.

I was hoping that having RAI treatment in 2015 would of worked but unfortunately for me I just got worse.

My doctor ( who was amazing ) recommended I had a total thyroidectomy, because my symptoms were so severe.

I then had a meeting with the surgeon who sent me away for 2 weeks to make my decision, let me tell you I cried everyday for those 2 weeks deciding what to do. One night I sat there and thought ... if I don't have the op I'll stay like this ( unable to live my life ) if I have the op and I get worse or if I have the op and it actually makes me feel better Well for me the odds were to do, I actually felt relieved that it was going to be done and excited I might get my life back.

The op went ahead and I remember coming round and the surgeon said "speak" I did and he said great lol

From the moment I came round I felt different, I felt normal, it's hard to explain, my friends said the colour on my face had changed, I felt I was back.

I have never looked back I have now returned to work, I feel amazing now it was the best decision I have ever made.

I take thyroxine, vit D and have B12 injections

Please let me know if there's anything else you would like to know, and good luck with your decision

Ps .... you can't even see my scar now it's amazing xx

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I'm very interested in this idea of RAI to help improve prospects of those with longstanding Hashis. How do doctors determine who this might work for and why aren't more people offered this is the success rates are high?

I have Sjögren's Disease and my entire body is affected. I also have longstanding Hashis - which an endo explained is probably secondary to my Sjögren's although I was diagnosed and treated with Hashis long before Sjögren's. I'm really struggling with fatigue just now and think I can distinguish, fairly confidently now, between my Sjögren's fatigue and when I'm undermedicated with Levothyroxine. If I thought removing my thyroid would help me to function better I'd get it done like a shot. Nothing to lose just now!!

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That's how I felt ...nothing to lose! I really don't know about the RAI treatment, it didn't work for me but it might be worth you looking into x

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Thanks. I will see. It could just be that the immunesuppressant I'm on a high dose of is preventing the Levothyroxine from being properly absorbed. Bloods being done next week to include FT3 and 4 🤞🏽

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I think people who have RAI often have problems with dry mouth afterwards. Since you already have Sjögren's Syndrome I don't think it would be suitable for you.

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Thanks this is helpful to know. My mouth is indeed very dry always but the fatigue is the worst!

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I had a TT dec14, am still on path to recovery. It takes a long time as endo appts are not as frequent as they say they'll be (I was told before TT I'd see someone every 6/8weeks until I was sorted. Well for me it was 5 to 5 1/2 months during which time I once upped medication myself as was struggling to hold down part time job (which I sadly had to give up in end anyway). Sadly the fact I did that annoys them to this day. Im now under new endo trying to get a t3 trial but its so long winded. I'm only perusing this difficult course as I can't exercise and my blood sugar and cholesterol rising so long term health looking even worse.

Having said that some people are fine post tt so you may be lucky. Gather all the info you can and get assurances fm yr gp and endo in advance. I wish you luck xx

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It's not the thyroid gland that's the problem with Hashimoto's. It's the antibodies which attack it. The auto-immune protocol (AIP) aims to reduce auto-immunity through diet and lifestyle changes. Your thyroid might still be functioning and producing the hormones you need. I would be very reluctant to agree to this operation without a second opinion.

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I've really reduced my thyroid antibodies by going totally gluten free. I started to see what would happen then over a year of private testing using the Blue Horizons Thyroid 11 I've watched my antibodies come right down to almost nothing, I've still got a few lurking around but they're well below the limit. Now gluten free is my way of life, I would never got back to my old style of eating.

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I had a TT due to cancer in 2013 and have been very disabled since. I've been in bed most of the time, terrible brain fog until I finally started on NDT, but still can't think very much. Of course many people are fine, but some are not and I don't think we have any idea what proportion it is.

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Get a new blood test and ask for a Full Thyroid Function Test, TSH, T4, T3 and thyroid antbodies. It should be at the earliest time, fasting and allow a gap of 24 hours between last dose and test and take afterwards.

It's now 4 years since your op and it is now time to see how your blood tests are. they will be different from the ordinary levo but you will get a bigger picture.

If GP wont do them, you can get a private one and one of the recommended labs have an offer every Thursday. Might be worth keeping an eye out.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Ask GP for B12, Vit D, iron, ferritin and folate.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

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I get blood tests every 6 weeks at the moment, and have done for about 18 months.

Currently I'm working on two avenues:

One is that its possible I may just need an over range freeT3. I've been going up and down over the top of the freeT3 range for several months, going from about 1.5 grains to now 5 grains. All documented with blood tests, basal temperatures, pulse and blood tests, and symptoms notes.

Earlier in this processes I felt much better on NDT, but was still hovering below 5% of previous energy levels. I'm now more like 10-20% range, which is enough to live more of a 'normal' life, washing, dressing, preparing own meals, etc. But also I'm now at the point where I can imagine getting properly better, I seem to be on that trajectory, and as my freeT3 is increasing so slowly, but symptoms are still improving, it might only be 1 or less above the range where I really do get a lot better. I'm hoping to get into the 60-80% energy levels. I think then I could work, do most things anyone could do.

I'm also looking into adrenals again. Mine used to be very low, and I treated them with some improvements in symptoms. But recently I retested and they are now very high. I'm seeing a private doctor who'se looking into adrenals and all the sex hormones.

All my vitamins have always been excellent. Which I think is consistent as I've never been known to have an autoimmune condition. Although my thyroid was somewhat swollen when it came out.

Apologies, my profile is pretty out of date. I will put some of what I've written here into it.

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Thanks a lot for your reply. Tell me please how you testing and treating your adrenals.

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It can be tested with a 24- hour saliva test, with 4 measurements. You can find out how to order one on ThyroidUK site. Actually I think there's now a 6 measurement one which sounds even better.

They can be hard to interpret, but StopTheThyroidMadness has a page about it, and there are some in other places.

When dealing with low cortisol, I went to a private doctor from the ThyroidUK list. He put me on a large amount of supplements, the main one being nutri-adrenal. Some members also take nutri-adrenal extra, which is a similar thing, both contain adrenal cortex.

I found this improved my symptoms, which at that time I could hardly move due to fatigue so it made a big difference. After about 3 months my numbers were raised and looked much more like the conventional shape. But in the end I lost faith in that doctor because he didn't want to switch me over to NDT, and also didn't seem to know where to go next with adrenals.

I've now retested about 2 years later, and my numbers are looking very high. I'm seeing a new doctor, but already not sure I trust her. Unfortunately the landscape of treating adrenals is quite complex and I don't think I have the concentration etc to plan my own treatment. Many members do, though, and there are lots of posts about it.

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Olgadimitri,

Hashimoto's made me very unwell and burned out after thyroidectomy when there was no longer a thyroid to attack. However, my thyroidectomy was radical because I had thyCa so very little thyroid material was left. Patients who have had less radical thyroidectomy have found they still experience Hashimoto's.

Apart from the usual risks of general anaesthetic and surgery there is a danger that vocal chords and parathyroid glands may be damaged during thyroidectomy. The risks are low with an experienced thyroid surgeon but they are there.

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Please can you or others here explain to me why it might help Hashis to remove the thyroid when it is our antibodies/ overactive immune system that is attacking our bodies not cancer?

My endo smiled incredulously when I asked him if I should try to get my thyroid scanned at the same time as having a parotid ultrasound. He thought (because I do know quite a lot about rheumatic diseases) that I would know that, by now, after probably a lifetime of Hashis and 15 years on Levothyroxine - my thyroid would have shrivelled to virtually nothing. Once we have taken any form of thyroxine for long enough our thyroid will cease to be a functioning organ he explained.

I had a cholecystectomy a few years ago which went wrong after I developed a post op sepsis. I recalled, too late, that the sonographer had warned me that my gallbladder tissue was fine as my stone was extremely large and going nowhere so I should just leave it be. But my GP and a surgeon persuaded me otherwise but, to be honest I've felt no benefit. As it happens my gallbladder had attached itself to my liver and so my liver function tests went into orbit for a year after its removal. Only more problems than good came from having this procedure for me.

So if my endo was right then how could the removal of an already defunct thyroid help Hashimoto's disease? Wouldn't it be similar to what happened with my defunct but happy gallbladder? Or is this discussion only relevant for those who still have a partially functional thyroid perhaps?

Surely if the immune system is attacking itself then, once the thyroid has gone it will just find other parts to attack? Certainly my entire system is under attack - thyroid or no!

Of course I can see why a person would remove an organ if it was causing inflammation or had cancerous tissue attached - but otherwise having this procedure seems entirely counterintuitive to me?

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Twitchytoes,

If you have any thyroid left it can be a target for autoimmune attacks. Your endo is assuming that your thyroid has shrivelled to nothing but without a scan he doesn't know that is the case. If the thyroid is defunct Hashimoto's should have burned out and there would be no advantage in removing the thyroid gland. Hashimoto's doesn't go on to attack other organs when the thyroid is removed. It is Graves antibodies which can attack other organs after thyroidectomy or RAI.

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Oh okay thanks for explaining Clutter. I thought perhaps there was a period of time for Hashimoto's, and that once we have had it for say, 20 years or more, it would have destroyed the function of the thyroid entirely? But it seems, from what you're saying, that there isn't a time cut off after all? And maybe I've just been unlucky in having other autoimmunity as well? Or maybe mine isn't actually Hashis as I've assumed (no doctor has used this name about mine - just Hypo) at all but is just part of my longstanding primary Sjögren's?

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Twitchytoes,

Well you can be hypothyroid without having Hashimoto's but 90% of hypothyroidism is caused by Hashimoto's. If you were told you have autoimmune thyroiditis, chronic thyroiditis or chronic autoimmune thyroiditis it is the same as Hashimoto's.

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Okay thanks for clarifying Clutter - they just tell me mine is part of my autoimmunity but that Sjögren's is the bigger disease for me.

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I have Graves' disease ... and once I took Carbimazole to lower .... I focused on appeasing my Immune system ... i.e. Feeding it as many vitamins , minerals and nutrients as it had taken from me during a very serious Graves attack ( the first )

I am Euthyroid now .. thank God .. I'm sure I'm staying that way because of the many supplements I now take which have restored my health ...and that rid me of the dreadful graves symptoms

but I would think that the same treatment with supplements could help Hashimotos sufferers too ???

Mx🌹

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SURGERY AND RAI ARE usually ... irreversible !!

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Madge1979,

Probably not. Graves does go into remission. Hashimoto's doesn't until the thyroid is destroyed.

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Then ... that is very sad indeed ....as my niece has it ... and she is totally unaware of that ... oh dear

Mx🌹

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I had a total thyroidectomy after suffering several years with health issues related to my unstable tsh levels.I had hashimotos and a large nodule and numerous smaller ones. I took the advice of the consultant and 18 months after the operation i have no regrets. No more horrible Antibodies flare ups and much more consistent Thyroid blood levels. Operation was a straight forward procedure and painless, recovery was a few weeks. Its a personal choice but for me it was right.

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I had one in 2009

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I don't think removing organs is ever a good thing unless it's to stop the spread of cancer and maybe not even then.

As others noted, it's not your thyroid that is the problem. It's your immune system and it will continue to attack something even after your surgery in all probability.

We had a wonderful series by Izabella Wentz and many, many naturopaths or gastroenterologists who gave wonderful interviews about all aspects of autoimmune disease of which Hashimoto's is notably the one that affects your thyroid. thyroidpharmacist.com/

I'm sure you haven't had very effective treatment if you have similar stories as the rest of us since the profession doesn't intend to accept autoimmune conditions as treatable.

Just listen to someone who knows what it is about before you make this life changing decision.

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Your doctor is obviously too stupid to understand there are ways to reduce thyroid antibodies. I would not remove it unless there is a huge reason, like swelling or pain in your thyroid.

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I wouldn't if I were you. What have you been taking?

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I'm on 200 levo now, vit D, B+B12, magnesium, iron, selenium, aminoacids, gluten-free... I will postpone the surgery for a while. Thanks a lot for replying to me

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This may sound funny but I have the best remedy for that although you would have to contact me personally for that, however the toxin that is hindering your thyroid can be dislodged by taking MSM which is basically sulphur , it is non toxic and can indeed oxidise the toxin. It's cheap and available online. You can supplement this with vitamin C always about 30 mins after taking. When you drink water add a pinch of Himalayan salt or use what's known as selo water. It's a saturated Himalayan salt mixture. All details if you want are on YouTube. I would also take beetroot juice. You do have to take any water free of chlorine and fluoride . Chlorine nullifies sulphur completely. Hope this is helpful.

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MSM. Sounds promising for immunity. May reduce chronic fatigue simptom. Thanks a lot for shearing. Definitely will try it.

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Now that is very interesting. I am a long time thyroid patient, hypo, and no sign of thyroid antibodies despite pernicious anaemia and Addison's, both of which are autoimmune, although levels have not yet been tested. I have been gluten free for some time now, but have taken MSM, along with condroitin for joint health for several years. Hmm. I wonder! I also filter all my water.

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Thanks to everyone for their support and answers. It was very helpful for me.

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I would put mine back if I could. Haven't felt right since and more and more difficult to get correct treatment. I wish you well.

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As a last last resort, yes. But exhaust all other avenues first.

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