After reading a lot of really appreciated responses to my post early. Please excuse me if this sounds ignorant...
Why do we not remove the thyroid if it gives our trouble and it’s easier to control with meds afterwards as you don’t have your thyroid interfering?
What happens to the Anti bodies when thyroid is gone?
Removing the thyroid by surgery or radioiodine carries risks. The thyroid also secretes T3, T2, calcitonin and perhaps other substances - it is better to retain some residual function if possible. Antibodies tend to die away about a year after the thyroid is removed. If the thyroid is causing obstruction to swallowing or erratic secretion or has a risk of cancer then consider removing it.
I would never remove my thyroid unless it was cancerous. I have seen so many people struggling to get help from the NHS because a lot of Doctors have no idea how to treat thyroid disease. The NHS have trained Doctors to go by the TSH which means nothing imho and Doctors should be looking at the T4 and T3 and antibodies.
I agree with you Lora7again.
There are a surprising number of doctors who don't understand that T4 converts to T3 and who believe that T3 is a non-essential hormone in the body, when in fact T3 is the active thyroid hormone that makes people hypothyroid when levels are too low, euthyroid when levels of T3 are ideal for the patient, or hyperthyroid when levels of T3 are too high. (Some patients have been told that T3 converts to T4 and that T4 is the active hormone. Otherwise why would doctors prescribe Levo only? ***rolls eyes***)
There have been cases of people having their thyroids removed and then being told to get their TSH checked a few months later because the doctor doesn't have a clue what they are doing. The patients in this situation go into what's called "myxoedema coma" fairly rapidly as a result of having no thyroid hormones. The risk of death from this condition is extremely high (25% - 60% of patients die).
The other problem with having the thyroid removed is that the thyroid contributes 20% - 25% of the body's T3 supplies. Once the thyroid is gone that contribution is permanently lost. The rest of the T3 in the body comes from the conversion of T4 to T3 within various tissues throughout the body. Since people vary in their ability to convert T4 to T3 many of them end up being extremely low in T3.
The biggest problem for the majority of people without a thyroid is that the majority of doctors think that patients only need Levo and the patient will be absolutely fine. Forums like this make it absolutely clear that many patients are not absolutely fine, with or without a thyroid, but then doctors think women - who are the main sufferers of thyroid problems - are just a bunch of whinging attention-seekers.
If the thyroid can be removed successfully b a competent surgeon then it would seem to be a cure against antibodies as said above. The problems you would encounter are "accidents" during the operation, the necessity to take NDT after a TT rather than levothyroxine and a scar (in my case 3 scars) on your neck which seems to upset some people for reasons that remain inexplicable to me.
Humanbean gives us details of the utter incompetence of some medical professionals towards thyroid issues, typical of other examples that I have experienced personally.
To have our thyroid gland removed means we will be forever on a synthetic replacement hormone.
Many on the forum, who still have a thyroid gland, have had immense struggles to find a dose that will relieve all of the miserable symptoms and sometimes doctors don't ensure that the dose is optimum and are 'happy' to keep the TSH somewhere in the range when the aim is 1 or lower and a Free T4 and Free T3 towards the upper part of the ranges. The latter two are rarely tested.
I live without a thyroid and it's been anything but a joy ride, more like a freak show and you end up being a throw away patient once that magical tsh number is reached.... I'm a big NO for thyroid removal unless you have absolutely no choice.
Thank you very much FOr your response. Did you have to have it removed? What are the difficulties you are experiencing?
Thank you again for your time to respond x
I had thyroidectomy 3 yrs ago because of (Papillary cancer) and it's been no picnic being without a thyroid because not only do you have permanent hypothyroidism and take pills forever you can suffer mood swings, lack of appetite, extreme weight gain (not everyone has this problem) joint and tendon pains and a laundry list of issues (everyone) has different suffering without a thyroid.
My top biggest complaints about being thyroidless (I have many more)
1. Crippling joint pains (developed Psoriatic Arthritis after thyroidectomy) some people develope other health issues after removal.
2. High Cholesterol levels (higher with each dose of meds) and of course this is my fault too!
3. Mood swings (Doctors say you need psychologist) again my fault never hormonal issues....nope just a women for yeah, mental and all just cant cope.
4. Excessive weight gain (this does not happen to everyone) I went from fit to fat in about 1.5 yr inspite exercising and dieting while being almost being crippled by pain and of course this weight has nothing to do with my thyroid levels(Your doctors will always blame you and your diet) doesnt matter what your health record (weight) showed prior to surgery.
5. Being thrown away once my TSH levels are considered normal although your health deteriorates before EVERYONE'S eyes.
6. Sleep apnea (this is why your fat now) this one is a beauty diagnoises (true for some people) when I complained about fatigue and constantly sleeping and automatically my Endo says I have sleep apnea so off to the sleep lab (yup I have mild apnea) hardly the earth shattering reason behind my fatigue ( I sleep 4 hours with the sleep machine and 8 hours without) you be the judge! Personally I feel it's a scam.
So unless you have no choice I'm still a big HELL NO to thyroidectomy even though it sucks to have issues being thyroidless could destroy your health in a minute, unless your lucky.....I'm not a good gambler!
Wow.
That is crazy! I am sorry. You should be proud of where you are now!
I can totally believe how the doctors try and minimize our issues presented to them. It’s makes me so angry. It’s like you have to do all the “ homework” to show them what is wrong and what they should know!
I was told my weight gain for last two years when diagnosed of Hashimotos that it was my mum who passed 6 months before. What a load of rubbish!! I picked up 4 stone! Only in the last two months have I been able to stabilize at a ridiculous weight.... . After my last med increase. No I need to get it off if I can.
I wish you all the best and thank you for your response xxxx
Quest2019, I had my thyroid removed due to cancer, and have been disabled for the 6.5 years since. In bed most of the day, hardly able to eat get my meals and to the toilet. With the help if this excellent forum I'm now well enough to wash and dress myself some of the time and very occasionally do something fun.
I think you have fallen for the doctors claim that its very easy to manage having no thyroid by just taking Levo.
If your antibodies are giving you a huge amount of symptoms, you might consider drastic action to get rid of them. But we are discovering all the time that even the very attacked thyroid is doing a lot of useful work to run the thyroid hormone system throughout the body. Having an existing thyroid makes it much easier to do well on thyroid hormone replacement, because your body is still doing quit a bit of work behind the scenes. Diogenes and his team is publishing new work about this all the time.
From observing on the forum, if you are being given a lot of distress by antibodies, I think you are quite unlucky. It seems to be fairly rare to have a very hard time with them, although more common to have the occasional twinge. It immediately makes me suspicious that maybe you are falling for more doctor fairytales, and that maybe they are blaming symptoms on antibodies but in fact they're caused by inadequate treatment? It's worth doing your own research and double checking everything about your treatment.
SilverAvocado , I am so sorry to hear this has happened.
I am truly sorry.
In regards to my question- I posted it purely because I was wondering. To be honest my GP and Endo have not been of any good help!
I have been having my tests done through medi checks and then presenting it to them. Then Endo who was private increased my Levo.even though I actually wanted to add T3. I still had a lot of symptoms so ran with the 100 mcg dose until I. Hold not anymore- I then tested again and went to my GP- who I was able to persuade to put me in 125mcg. I take all necessary vitamins. Checked my cortisol. Although my anti bodies are high on last test - they were over 2000 since diagnosis. I have no idea how they actually went down .
My partner posed the question on the removal— and then I was wondering why.
However from all that I have read it is not a good option for me and have heard of quite a few bad outcomes. No one has actually given any positive feedback.
I think maybe my next step is to look at my lifestyle/ diet.
Thank you so much for taking the time to respond xxx I really appreciate it xxxx
You're very welcome Quest2019 
No problem on asking the question, it is important to ask in order to learn, and I am sure many people will have benefited from your post.
It can be a big slog to find all the extra things to try to get a little bit of improvement. Getting the hormone dose is one of the most important parts, and often doctors are useless!
I agree with the others - wouldn't have had my thyroid removed for anything. I became hypothyroid as a teen and had a lot of health problems alongside. I managed to clear all these up in around age 33 after going gluten free and resolving many other issues and I had the best couple of years in my life with enough energy and motivation to do anything. I then had to do three gluten trials over a year or so and this seemed to be the end of my thyroid which blood tests now indicate is as dead as a dodo and doing nothing in the background and I simply cannot get back to how I was feeling in those couple of years and nothing feels right in my body with only synthetic meds and my thyroid doing nothing itself in the background so it can make a huge difference.
Additionally, I wouldn't want any damage done to my parathyroids whist undergoing the surgery - that would be far worse!
I also tried hard to get T3 but no go on the NHS. Taking vitamin and mineral supplements at the levels suggested on the thyroid Uk website helped me quite a bit. I was already on a gluten free diet and I know this significantly improved my energy levels and other symptoms when I started it to help my rheumatoid arthritis. So yes definitely look at diet.
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