Thyroid Removel

[KS2020]

I had Graves’ disease 20 years ago and it has also come back with it affecting my liver and heart. They have said this is rare to come back after this length of time. I now have been told I also have a toxic nodule and they can’t tell wether it is benign or cancer. I am on Propylthiouracil and was told I can’t take this for ever and will be having my thyroid removed very soon. I am very nervous about having this done, they have said I have no choice. What will I be like without the thyroid.

[Pascha1]

Hi sorry to hear that the meds have caused you problems are you in the UK?

if so did they try you on Carbimazole?

The only thing I can advise if you have no option other than to take thyroid out, is that you talk a plan of aftter treatment with the Endo.

Most do get on with the treatment for Hypothyroid but their is a small cohort of people who do not!

For these people T3 added to Levothyroxine can work well, but many Endos in the UK are not good at letting people know it is available.

I would sit down with the Endo and ask him to go through what treatment will be available to you when they destroy your thyroid, if T3 is not on his agenda I would change my Endo to one that did as if you do not get on with Levothyroxine life will not be good..

As said its a small proportion who dont get on with it... ask themto do you a plan of after treatment......

Or maybe go for another opininion from another Endo to see if killing your thyroid off is the only thing available?

thats all I can say about it sorry but hope it helps

[KS2020 in reply to Pascha1]

Hi

Thank you for your reply. Yes I am in the UK. When I first had Graves Disease I had a allergic reaction to Carbimazole. I worry about the medication as at the moment I am covered in a rash caused by the Propylthiouracil. I will ask about T3 at my next appointment.

[bantam12]

I had a partial thyroid op in my teens and Graves came back after 30 years of being free of it ! i don't think it's as rare as you were told as once we have Graves we always have it so reoccurrence can happen anytime.

[pennyannie]

Hello KS2020

Well, Graves is an autoimmune disease and as such, it cannot go away, it's a disease, it's your own immune system attacking your body, and when your immune system attacks your thyroid, the symptoms are varied, frightening, and some, down right odd and seem totally unrelated.

The disease is generally triggered by stress and anxiety, and maybe something has happened recently to cause your immune system to go into overdrive , and your thyroid has been the victim of an attack by your own immune system.

There is an alternative AT medication, Carbimazole, which may be better tolerated.

The AT medication should be adjusted to block your production of the thyroid hormones to offset the extreme symptoms of this phase of the disease and to alleviate your symptoms.

Once your balance has been restored, presumably your endocrinologist will discuss with you the possibility of staying on the AT drugs, in an attempt to find remission. I read most people get about 15-18 months of treatment on the NHS and then are encouraged to take the drastic step of either a thyroidectomy or RAI ablation.

If you can stay on AT medication this has to be the best outcome, and I read of people being on AT medication for very many years.

Thyroid surgery is preferable to RAI: surgery is more precise, and cleaner, though obviously no one would choose to have their throat cut and such a major gland removed.

RAI ablation is the worst treatment option. The toxic substance is taken down as either a pill or in liquid form and the thyroid gland is slowly burnt out in situ, and it is known that RAI is taken up by other glands and organs, to a lesser extent, within the body.

RAI is the cheapest treatment for the hospital to perform and there does seem to be some suggestion, in some medical circles that this is the best option.

Well, it is not, though it is in the hospitals best interest it may not necessarily be in yours.

Living without a thyroid comes with it's own set of issues, one of which is obtaining the appropriate thyroid hormone replacement from the NHS.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3.

Some people can get by on T4 alone, some people at some point in time, simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently.

It just seems common sense to me that both these essential hormones should be on the patients prescription for if and when needed to bring the hormones into a balance and to a level of wellness acceptable to the patient.

You might like to look at the Elaine Moore Graves Disease website : this lady has the disease and is a medical researcher, and written many books on the subject.

Your might like to read Professor Toft's article, in full on this website entitled - Thyroid Hormone Replacement - A Counterblast to Guidelines - ( sorry, I can't do cut/paste ?? !! ) :

It's a difficult time, I understand, but please do your research, and play for time, if you are well enough to do so -

I'm with Graves Disease post RAI in 2005 which I deeply regret and am now self medicating, buying my own thyroid hormone replacement and getting my life back, as best I can.

[Pascha1 in reply to pennyannie]

I can not tolerate any T4 at all I have only recently found a decent Endo who has agreed for me to have T3 mono, it really has been quite life changing, I am able to get up most days and have motivation, something I never had on T4 Levothyroxine, Its the best I have felt in 36 years since having sub total thyroidectomy,

If only I had met a decent Endo 36 years ago I may have had a much better quality life,,

I Geel quite bitter to I was left to rot that amount of time, This Med was more available back then but I had the most ignorant GPs who failed to notice all my symptoms were from not treated Hypothyroid for 20. years and then under medicated on T4 that had made me feel much worse then before treatment, then I got an add of T3 this improved things for a while till they swapped brand of T3 which put me back to bed bound,

I now have a decent GP who has listened but is leaving at the end of this month which worries me as know some idiot ignorant GP is going to try take T3 of me and I will be back to no quality of life, I think tbh if they take it off me I would just end my life,As how I was before T3 mono was not worth living for,,,

I really do not think Drs know how badly treated hypo is so deliberating on a patient who just cant tolerate the one medication Levothyroxine they think works on everyone ,as I know it does not work for all!

I have many genetic faults in thyroid pathway, I also have a problem will ALL prodrugs but this gene fault may not be discovered for 20 or so years and as its rare I doubt they will even try to discover it,,,,

The whole way they treat hypothyroid is a disgrace and I personally do not trust 99% of the medical profession as I have experienced the ignorant Doctors who left me rotting and suffering due to them taking out most of my thyroid just to get me of the hospital list all to save a few quid,,

I do not feel guilty the cost of my T3 as its the NHS problem for letting price get out of control,, why should I feel guilty I cost about a grand a month,.. they need to sort price out not make us who don't tolerate T4.. ..

It should not be about cost but peoples quality of like and what they do to hypothyroid is cruel and somewhat negligent by leaving many suffer as they get taught at med school we all get well on T4 ( levothyroxine! its the biggest load of bull s**t they get taught atmed school.. Symptoms are no longer known by doctors its just disgusting...

I really think when they are taking thyroid out that they should do genetic testing as well , that way they would know it will cost them more than carb and maybe work on peoples diets to go into remission

Yes I am very bitter as they left me for years with a TSH of over 4 and was never able to have children because of that that'and d macrocytis which they never told me about so I will be on own when older as have no children...

Anyway so I think if they are trying to take thyroid out, a plan of after it happens must be made in writting,, maybe genetic testing to be don although you could do your own Like I have has to

Ancestry do raw data for around £50 but you will have to get an app to read what it is, as its quite hard to understand otherwise such as Selfdecode which is about another £50 which will give you good report son many genetics and not just thyroid but all genes, its actually quite interesting looking at things and realising thats what else cold be wrong

Or you could have the Bluehorizon genetic thyroid panal but that cast about £215( you can try code KL20 on that not sure it will work for 20% off,) , anyway they give about 8 genes on thyroid and a report so is quite good as they include the Dio1 and Dio2 gene which means you need T3 . so you will know if you need T3 in treatment before you get thyroid killed off It told me I had graves and that I am likely to get other auto immune in future ( Thats another thing drs failed to tell me that if you have one auto immune many more could follow and even worse none was ever looked for),

But get that plan in writting from Endo agreeing that they will prescribe t3 if you are left unwell on levothyroxine..and plan of what level of TSH they will treat you at.. a plan that they will do a full thyroid panal of TSH, T4 and T3 and if under care of Endo reverse T3 as if on Levothyroxine it can make rev T3 which blocks what T3 you are producing from levothyroxine,,its not all as ismple as they make it out to be!

As I said they left me for 20 odd years suffering with a high TSh they never took into consideration part of thyroid was missing they never once tested ny T3 so they didnt know what was going on with whole thyroid... nor did they test my T4 level often more the 1st few years but even then they ignored my very low thyroid levels !

With a plan in place in writting ,you will be you knowing whats going to be tested in future and your GP will have to do as what Endo has planned for you and not belike most ignorant Drs that are out there as many are clueless with Thyroid and vitamin levels but with a firm plan and also make sure the Endo does not discharge you straight away like they do after destroying thyroid Just get everything in writing also try leave it that you go back yearly for checkup that way they cant ignore you should you not Get well on T4 ...

Just a bit of security will safe guard your future..

Good luck xx

I will add my new Endo tells me all those who have thyroidectomy RAI sub total all go back saying they dot feel well, Hes a very good Endo as he will prescribe T3 as he understands that T4 doesntwork for all....

If your Endo refuses to do plan I believe Thyroid UK have a list of decent Endos who will work with patients to get them well so change endo to one of these who knows about thyroid

sorry about rant but I have been a victim in having thyroid destroyed and left to rot..

[pennyannie in reply to Pascha1]

Hi Pascha

You don't need to apologise for the rant - I'm on your side - and done my fair share of sounding off !!

Thank goodness you now have an endocrinologist who can help you.

I'm sorry your own doctor is due to leave the surgery and hope your new doctor will continue the medication regime that is working for you.

I found no help nor understanding of my Graves Disease and symptoms after RAI -

and as I have written I am going it alone and am buying my own full spectrum thyroid hormone replacement, thanks to the advise and help I found on this amazing site plus a book or two on the Graves Disease specialisation.

The situation is dire, and we are a small % in the overall number of people presumed to be " happy on monotherapy with Levothyroxine " .

We are marginalised and it is daunting that the medical profession do not seem able to extend their knowledge, and seem happy to leave us limping along, and then diagnosing additional ailments and other medications and throw in antidepressants as a consolation prize.

Professor Toft's the eminent endocrinologist 2017 article - Thyroid Hormone Replacement - A Counterblast To Guidelines - is on point, in so many ways.

Unfortunately both my doctor and endocrinologist chose to ignore the article.

It seems to me that most NHS employees are controlled by the computer and the directions it spews out - and the patient isn't considered as a person and one's symptoms are dismissed or not even heard, as ultimately they are just employees and their jobs are at stake should they choose to " opt out " of the company policy.

[Lora7again]

Can you not just have part of your thyroid removed? If it is definitely cancer yes you must have it removed but if you can just have the suspicion lump removed and keep the rest that's what I would do. This is just my opinion because without a thyroid you will begin a lifetime of struggling to maintain good heath. This is just my opinion but doctors do not seem to have much knowledge about how to treat people with thyroid disease (read my story on my profile) When your thyroid is removed there can be problems I know someone who lost their voice because her vocal cords were damaged it did come back but she continues to have a croaky voice. Your Doctor will hopefully prescribe you both T4 and T3 but not always in some cases. As for blood tests I just hope they do a fully thyroid function test I have had graves for 12 years and they will only test the TSH which does'nt give a full picture of thyroid function. Sorry if I sound negative but I have had experience of how badly you are treated by doctors if you have thyroid disease. If you are going ahead I wish you good luck and if you need any help and advice please ask members on this site because I doubt you will get much support from the medical profession.

[Pascha1 in reply to Lora7again]

I had sub total I wouldnt advice that as I was left suffering for years with that, I think probably all of it out is better than part as they do not know if thyroid works to full extent, I also found when was treated its more difficult as sometimes mine works and upsets treatment, I think would been easier to have nothing then I would of been treated quicker than 20 years,, I dont think they like doing sub totals these days,, as harder to treat when hypo

[Lora7again in reply to Pascha1]

That is your opinion ... my mother had a lump removed from her thyroid when she was alive and made a full recovery and didn't need to take thyroxine and the scar was hardly noticeable. We are all different.