Has anyone on here paid private to have a thyroidectomy?

[AP1960]

New on here

[pennyannie]

Hello AP1960 and welcome to the forum :

Most people on here are trying hard to keep their thyroids - that's ironic, isn't it ?

There is nothing on your profile page - do you want to share anything with forum members ?

I'm with Graves Disease post RAI thyroid ablation in 2005 and now manage lingering Graves,thyroid eye disease and hypothyroidism and self medicate with full spectrum thyroid hormone replacement.

[AP1960 in reply to pennyannie]

Thanks for the reply I was diagnosed with overactive thyroid after weight loss February 2020 and put on carbimazole also he noticed my eyes and referred me to the ophthalmologist department

From March through Covid till September I have only received drops for my eyes

I do have Graves eye disease

Again because of Covid my next appointment was listed for April which has already been cancelled

I did have MRI scan they did say no nodules

My next telephone appointment with the NHS endocrinologist is the end of March

Beginning of Dec I paid private to see a doctor from moor field eye hospital and he took me on there with the NHS where I have had 6 drip steroids and I am now on tablets

I had to also pay to talk to the thyroid guy who is now doing block and replace

My eyes are still not settled my looks have completely changed it has made me very depressed for which I am now also taking tablets for

All very new to me and very confusing

I did read that if the thyroid was removed this would help my eyes

Hope this makes some sense

[pennyannie in reply to AP1960]

I'm so sorry to read of your experience - and in fact speechless :

Just to say I would think very seriously about what you are planning to do, especially since living without a thyroid is no walk in the park with many of us having to self medicate as the NHS do not routinely prescribe anything other than Levothyroxine, despite the fact that there are options, for those who do not do well on T4 only.

As I understand it, Graves Ophthalmology runs independent of Graves Disease :

It all comes down to an experienced endocrinologist being able to manage and dose you with anti thyroid drugs and T4 - Levothyroxine and to gentle titrate these medications and not let you fall into hypothyroidism.

Graves is an auto immune disease and your thyroid is the victim of an attack by your immune system, and it is because the the thyroid is such a major gland that Graves is said to be life threatening for some people.

Graves is said to be a stress and anxiety driven auto immune disease and you have had more than your fair share of this by lack of care and advice exacerbating your symptoms and the physical, psychological and emotional trauma you have experienced, trying to get treated is truly upsetting to read.

The thyroid is your body's engine and manages and regulates your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

The thyroid is also referred to as the conductor of all your bodily parts.

Graves is a poorly understood and badly treated auto immune disease, and removal of the thyroid either by surgery or RAI can simply compound your health issues.

Sadly the NHS have little knowledge on the AI component of this disease and believe by removing the target of the AI attack they have solved the issue, but the reality is, it is not that easy - nothing is.

I sensed your frustration and anguish in your first post, but I'm glad you have opened up a bit and shared some of what you have been through.

You might like to dip into the Elaine Moore Graves Disease Foundation trust as Elaine has Graves and went through RAI treatment and finding no help with her continued ill health started researching Graves for herself in the late 1990's.

She has now written extensively covering every aspect of this auto immune disease including Graves Ophthalmology and is a leading researcher and campaigner for better, more holistic options for Graves, and for allowing time, for the immune system to calm down, and has various sections on alternative, less invasive treatment options.

It's a massive learning curve and fully understand you have had enough and just want it over, but that doesn't necessarily happen as we dealing with an auto immune disease, which is in your blood, and not just in your thyroid.

Your thyroid is the victim in all this, and not the cause - as the cause is your immune system attacking your body. When the thyroid comes under attack it is because the thyroid is such a major, important gland that the symptoms experienced can be said to be life threatening if not treated and you end up seeking medical help.

The medical help is to block your thyroid hormones and allow your T3 and T4 high over range numbers to come back down into range and generally an 18 month window is allocated for this. Treatment is then " looking for remission " and coming off the AT drugs, or the more drastic options of thyroid removal or RAI are offered.

Little if any reference is made to the antibody component of this disease after initial diagnosis, which is a vital part of how this disease progresses and until your antibodies are greatly reduced there is little point in looking to come off medication.

I deeply regret loosing my thyroid to an AI disease and the RAI treatment caused my eye disease issues and I now manage lingering Graves, thyroid eye disease and hypothyroidism.

My Quality of Life is worse now than when I was taking the anti thyroid drugs - and if I had my time again I would stay on the AT drugs until my own body immune system response had calmed down sufficiently to maybe look at seeing if I could have found remission and kept such a major gland.

I am self medicating and buying my own full spectrum thyroid hormone replacement and I am more well now, thanks in the most part to this amazing forum, as I have found little help and advice from within the NHS system.

You made sense - I totally get it - and I hope I make some sense back to you :

[ling in reply to AP1960]

Please consult your eye doctor re thyroidectomy. Your thyroid eye disease (TED) sounds very serious.

AMENDMENT

To AP1960, please accept my apologies for the earlier incorrect information regarding RAI and TED. I am separately sending u a message on this matter to clarify.

Please find below useful information regarding TED.

Thyroid Eye Disease

webeye.ophth.uiowa.edu/eyef...

Best wishes and deepest apologies.

[PurpleNails Administrator in reply to ling]

I have also read Graves’ disease and thyroid eye disease are treated as separate condition, although they both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other.

Endocrinology will treat the thyroid gland, while ophthalmology deals with the the eye disease. Treatment of one will not impact on the other as the two diseases run their separate courses and do not necessarily occur at the same time.

I have never heard of RAI being preferable or more appropriate than surgery for those with TED. I have read in the information leaflet given to me from the hospital (link below) regarding RAI, the procedure should be avoided if there is history of TED (especially if active) although a course of steroids can be given before treatment if absolutely necessary.

Thyroid levels fluctuating and becoming low is said to adversely affect TED so either intervention will result in this happening. If this can be monitored and controlled through frequent testing and correct treatment fluctuations can be avoided.

btf-thyroid.org/treatment-o...

[Partner20 in reply to ling]

RAI is actually contra-indicated for those with TED.

[ling in reply to Partner20]

Partner20, thank you for bringing my error to my attention. I stand corrected. Thank you for pointing the error out so I have the opportunity to clarify the matter with AP1960.

I have as well amended my post to remove the wrong information.

Thank you and best wishes.

[Partner20 in reply to ling]

Glad to be of help and to be able to pass on what I know. All best wishes to you, too.🙂

[pennyannie in reply to AP1960]

Hey there again ;

Having just reread my long reply - apologies for the repetition :

I was past my " best before " time of day and got carried away,

I just wanted to make sure I made you aware of the importance of the antibodies and that this is an AI immune disease and your thyroid the victim in all this, and not the cause :

[Hidden in reply to pennyannie]

I would recommend that you do NOT get a thyroidectomy in a private clinic. That is a rather strange thing for me to say as I distrust greatly every doctor, endocrinologist and radiologist I have ever spoken to regarding my own thyroid problems.Firstly can I say I have knowledge or experience of Graves, eye disease or autoimmunity.

in 2004/5 I had a most serious attack from a multinodular goitre and taken into local hospital. The surgeon felt himself incapable of continuing once he saw inside my neck, sewed me back together again and sent me home. SIX months later, even more ill than before and with my neck in a far more advanced state of breakdown, I at last got to the far bigger regional hospital. The appointed surgeon backed out and tyhe most experienced surgeon available who just happened to be visiting the hospital on his day off offered to take on the task. After a 6 hour operation and a good night's sleep, I spoke to him and he said my sace had been the most complicated and dangerous thyroid op he had conducted in over 13 years.

The lesson to be learned here is if you would have trusted a surgeon in a private hospital to have continued and lost himself the fee for the job?

No complications happened (except for the fact that Levothyroxine was totally incapable of keeping me in good health afterwards) and I am still here, now on NDT. I could so easily have lost my life in a private hospital.

A similar thing happened 5 years later when I again nearly died during a nephrectomy when the surgeon lost control of artery and had to call upon emergency assistance. Once again I could have died without this help.

[pennyannie in reply to Hidden]

Hey there Panda - did you mean your reply for the O/P ?

[humanbean]

I would not recommend having major surgery of any kind in a private hospital. Many of them have no doctors available to treat emergencies at night, and you would have to be rushed to an NHS hospital. If the emergency was, for example, you losing a lot of blood then having to be rushed to an NHS hospital could delay your treatment substantially, and in the case of bleeding it could be fatal.

Anyone who has surgery in a private hospital that might need an overnight stay really must ask what doctor and nurse cover the hospital has outside office hours.