Thanks everyone: Hi thanks for all your posts, I... - Thyroid UK

Thyroid UK
102,811 members118,691 posts

Thanks everyone

Bromly1
Bromly1
16 Replies

Hi thanks for all your posts,

I am on carbimzole 10mg per day but the consultant says that I should have my thyroid zapped because my heart and bones are being damaged???

My last consultant said if I get my thyroid zapped I’ll be on medication for the rest of my life if I don’t I’ll be on meds for life so why bother.

If doctors can’t agree then what hope do we poor patients have to make decisions that we have to live with?

After waiting for over 6 months from I had the scan done I finally have my appointment early next month( Northern Ireland waiting lists are the longest in UK) still don’t know what to do confused.com

16 Replies
oldestnewest
SeasideSusie
SeasideSusieAdministrator

I am on carbimzole 10mg per day but the consultant says that I should have my thyroid zapped because my heart and bones are being damaged???

And your consultant has done tests and has proof this this???

An acquaintance of mine has been on Carbimazole for many, many years, GP pushes for thyroidectomy or RAI but she is managing fine on the Carbimazole and refuses to have her thyroid removed/destroyed. She doesn't have any heart or bone problems. Of course, everyone's circumstances are different, but don't be pushed into something you don't want.

Reply
Lalatoot

Have you ever come off carbi to see iff you go into remission? I started on 40mg carbi and reduced gradually to 5mg. 2 different endos then tried me without meds as some get a period of remission. This was years apart. Both times I went hyper again. I never felt balanced(some would say I am unhinged anyway

😁) so opted for RAI. Yes the endo did push it but as I live in the back of beyond I have no option but to work with her.

Reply
Bromly1
Bromly1
in reply to Lalatoot

Ya I did come off carbi but had to go back on went hyper again then had remission then hyper again then nodes found even worse hyper symptoms got worse. They raised carbi at that point to 10mg plus on low level Beta blocker as I have very low bp. Nout simple with me!

When did you get the zap ie how long ago and What symptoms have you got now and are you still taking meds just different ones? Soooo sorry for so many questions.

Reply
Lalatoot
Lalatoot
in reply to Bromly1

Don't apologise for asking questions. I have had to learn a lot by asking. It is the only way as the professionals are not clued up at all. I am not typical. My friend was allergic to carbi so she had rai early on. She is now fine on 100mcg levothyroxine a day. I had 5 years on carbi. It has been 4 years since rai. I have never quite been able to get balanced and this last year I was really hypo. I learnt from here that I was not converting ft4 to Ft3 efficiently. I was able to demonstrate this to the endo as the NHS had twice done full thyroid tests which included Ft3. The endo has prescribed t3 medication. However I haven't yet started on it. As I said I wasn't balanced on carbi and I had to take citalopram to mask the anxiety. I think I have more chance of getting balanced on levothyroxine and t3.

1 like
Reply
Hurtlocker

Well I had overactive thyroid for a year..felt dreadful / had everything you can imagine..anxiety/nervousness pains in muscles and joints ..tried block with carbimazole and replace.with lrvo..just didnt work..intolerance of drugs so I came off all. Had thyriod radioactive therapy in Jan..had two.months of me again!!! Now hypo and syptoms much the same...taking 75mic wockhardt levo..tried several.but this seems friendy!!!taking it at night...will let you know how it goes...side effects in day were dizzibess.exhaustion.vision fogginess and mind fogginess..thought it was just me going crackers!!@Not,.. taking evo at night seems to work for me!! Keep you informed!@@

Reply
R2d2c3po

I regret having RAI and in hindsight would have stayed on carbimazole.

For me I need to suppliment my levothyroxine with T3 which I have to get from Germany. Some of us have to resort to self medication as NHS try to treat everyone the same. Long story!

I recommend reading this article

tpauk.com/main/wp-content/u...

Good luck

1 like
Reply
pennyannie

Hello Bromly

Graves is an autoimmune disease and as such you have it for life, it's in your blood, your DNA.

When your immune system attacks your thyroid the symptoms experienced can be frightening, confusing and upsetting. If at all possible I would suggest you stay on the AT Drugs in an attempt to ride out this phase of the disease. It is true that which ever way forward you choose, you may well be on medication for the most part of your future life.

The medical profession relieve the symptoms of the A/I attack by offering Carbimazole or PTU, but have no idea how to control and or, reduce the antibodies that are causing the problem.

Removing your thyroid by either surgery or ablation with RAI doesn't stop your immune system making antibodies, though this action will hopefully give you initially relief of the symptoms currently experienced. Once hypothyroid it can be very difficult managing the new symptoms experienced especially when you are not able to access the necessary thyroid hormone replacement on the NHS.

I believe of all the options available RAI is the least preferable.

It is known that thyroid eye disease can be caused by this treatment option.

It is known that RAI is taken up, to a smaller degree by other glands and organs in the body.

RAI slowly burns out your thyroid is situ, and is a toxic substance.

It is very likely to be recommended by the hospital as it is the cheapest option for them to implement, this does not mean that it is in your best interests.

The hospital may never see you again, as it's " pretty much job done " for them and your doctor in primary care may not be well versed in managing Graves Disease.

Surgery is " cleaner " in that it is more precise, the thyroid and those anti bodies within it, removed from the body, though of course, nobody wants to have their throat slit.

If I could have my time all over again, I would stay on the anti thyroid medication, and keep my thyroid. It is a major gland responsible for full body synchronisation, your mental, physical, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.

Please do your research :-

You might like to take a look here :- Elaine Moore wrote a book when she found no help after going through RAI in the late 1990's and wrote a book to help other people who might be in the same predicament. She has now gone on to be a leading medical researcher in all things Graves for all Graves patients, world wide. Her website is multi faceted and worth your time and there is an open forum, much like this amazing site where you can read, learn, ask questions and have genuine replies from caring people.

Professor Toft the leading endocrinologist wrote an article, that is in full on this website, Thyroid hormone replacement - A Counterblast to Guidelines : within which and I quote :-

" I am so concerned about the state of advice of the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism ".

I am with Graves Disease diagnosed 2003 at 56, I was given RAI in 2005, and there was no treatment choice offered to me. I became very unwell some 8 years after thyroid ablation.

Having been refused a trial of T3 early last year because of my suppressed TSH, ( a common issue for some Graves patients ) I am now self medicating and am having to buy my own thyroid hormone replacement since I have received no help nor understanding from within the NHS.

I have had to find my own answers as to Graves Disease, back to front, with Elaine Moore's book, Graves Disease A Practical Guide, and the help of this wonderful website, amongst a few other books, I've put myself back together as best I can. I'm a work on progress, but much improved and getting my life back.

Please do your research, it's your body and your choice.

1 like
Reply
Dovedale
Dovedale
in reply to pennyannie

Really interesting comments - can I just ask about your view that Graves is with you for life? I have been told it burns out 18-24 months. I am now in that timeframe - tried to reduce from 20 Carbimazoledown to 15 a couple of times but each time my TSH has dropped to zero and I have to increase again. Also have TED.

Reply
pennyannie
pennyannie
in reply to Dovedale

Graves is an auto immune disease and it's your own immune system mistakenly attacking your body.

When the Graves antibodies attack your thyroid you probably go to the doctors as the symptoms can be alarming and disabling, because your thyroid is major gland and it's going a bit haywire.

The NHS give you anti thyroid drugs for approximately 15-18 months. These drugs work to block your own natural production, in the hope that you can "ride out " this phase of the disease, and say words like " it'll burn itself out " well if your on AT drugs it doesn't but the RAI will certainly finish off the job and the NHS consider it " job done ".

You probably will become hypothyroid but the NHS believe that this is easier to treat than being hyperthyroid. Well, just check out how many members are on just this site alone, complaining of the NHS treatment for hypothyroidism. Neither condition whether it be hypothyroidism or hyperthyroidism is a quick fix and sorted by simply taking a little pill every day, dealing with the A/I components of both Graves and or Hashimoto's isn't taken into consideration by the NHS as they can't cure this aspect of the disease and tend to ignore it.

Realistically antibodies may not react within this predetermined time scale and I believe this 18 month "window " should be extended to whatever time scale suits your body, and the antibodies should be regularly reviewed and assessed as to their activity and to when would be the best time for you to stop / reduce the AT drug treatment, and attempt remission.

This can take considerable time and expertise by the endocrinologist. In my limited experience I saw a different endo, every time I went, there was no continuity of care, all the doctors eagerly doing their rotation, never watching or following the progression of any patient for more than a few months.

Since you mention that you already have thyroid eye disease, you should NOT be considered for RAI at all.

I would think, but do not know, that at this point in time, since you are on AT drugs your TSH would be very low as production has been artificially suppressed by the AT drugs.

This is where the skill of an experienced endocrinologist may come into the equation.

Your body clock has been running too fast and now maybe running too slow, your metabolism has been compromised and your ability to gain nutrients, vitamins and minerals from your food may have been weakened.

It is essential that you keep your core strength strong and stable during this period and suggest that you have your ferritin, folate, B12 and vitamin D tested as these all need to be optimal in the ranges for any thyroid hormones, either your own or those you may supplement, to work.

Just another article I forgot to mention earlier :- ncbi.nlm.nih.gov/pubmed/306... - sorry but don't understand cut and paste.

1 like
Reply
Dovedale
Dovedale
in reply to pennyannie

That is really helpful insights. Certainly rings true - I have a hospital appointment every two months and it is pot luck who you see! Thanks again for your help

Reply
Coconutty

Being hyperthyroid might affect your heart and bones, but if you’re stable and euthyroid on meds then that shouldn’t be an issue. All the Graves treatment options are about achieving euthyroidism. So whichever one you look at be it titration meds, block and replace meds, TT plus replace, RAI plus replace, they all have the same aim. The only difference is with meds you have a chance of remission (but risk of relapse), whereas TT and RAI are more final with replacement meds for life. I chose to keep shooting for remission, some people are more comfortable with final solutions plus replace. None of the options are easy or free from potential complications. You have to do what feels right for you. I have relatively uncomplicated Graves (so no goitre or nodules etc), so I’ve always just done the meds, and I respond well to them and tolerate them. 7 years and 2 relapses later I am now in antibody remission (this is the only type of remission there is, euthyroidism is not the same as remission). I’m still taking low dose Carbi a couple of times a week due to my relapse history, it’s still early days. But I’m happy to have my thyroid for now. I have done a ton of stuff over the years to work on root causes and to try and calm whatever’s driving the AI process. I personally think that’s very important. Remission is not something that is linear or something that has the same timescales for everyone (ie the party line 18 months). We are all unique so we need unique solutions. I just detest the scaremongering by some doctors about the meds.

1 like
Reply
Dovedale
Dovedale
in reply to Coconutty

Can I ask what key things you feel address root causes? Do you mean nutrition etc? Thanks

Reply
Coconutty
Coconutty
in reply to Dovedale

Everything. Deficiencies, diet, lifestyle, stress, hormones (especially if female middle aged), toxicities, sleep, gut health etc. And just don’t let docs run you slightly hypo. This happens a lot with Graves patients. We’re kind of used to high levels of thyroid hormones, then we’re medicated “into range”, but we don’t do so well at the bottom of the range in my experience.

Reply
Dovedale
Dovedale
in reply to Coconutty

Thanks Coconutty - that's very helpful

Reply
Dorset15

2 years ago my GP thought my blood tests showed I had an over active thyroid but at that time I could not get an appointment with a consultant as my results weren't severe enough. A year later, and a very slight worsening of results, at my first appointment with a consultant the three treatment options were explained to me and at that time I didn't want to try any of them. The consultant wasn't happy with this response and I was told that my heart and bones were being damaged. At that time, on a scale of 1-10 my thyroid problem was rated at 2 by the consultant. I don't believe this low score should warrant thyroid removal or RAI yet I believe the consultant would have offered either if I had agreed. At the second appointment I did agree to trying medication but stopped taking it after 3 weeks because of the hideous side effects. I now see a different consultant. She is happy to run blood tests every 3 months and does not pressure me into having treatment. My heart was monitored for 24 hours and is absolutely normal. I was diagnosed with osteoporosis prior to my diagnosis of an over active thyroid. Osteoporosis runs in my family, without thyroid problems. At my most recent scan, my bone density had increased and that is down to changes in my diet and exercise. I know in the future I may need treatment but for the moment I live with the symptoms and I am not under pressure from anyone in the medical profession.

Reply
LAHs

The "heart and bones" comment, being interpreted, must mean that your TSH is lower than your doc would like it. (ie s/he thinks you are hyper) The "heart and bones" part is rubbish, ignore it. If your TSH is very low on Carbimzole(sp) then take a little bit more. This will slow everything down a bit and raise your TSH. If you feel perfectly well on the 10mgs then leave it all alone, keep going on what you take, don't zap your thyroid because your TSH is too low.

It's better to fiddle around with a dose you are beginning to understand than to zap your thyroid. Like the other doctor said, you will just be fiddling around with a different pill (Levo or NDT) if you cause hypothyroidism (via a zap).

1 like
Reply

You may also like...