PurpleNails7 months ago

Welcome to forum

Do you currently take medication eg carbimazole? How much?

How was your Graves confirmed? TSI or Trab positive?

Have you had ultrasound or uptake take scan ?

If the size of goiter the prioritising issue eg affecting breathing swallowing or voice?

Some are not adequately replaced after a thyroidectomy and they have weight difficulties.

If you become knowledgable now you can ensure you can advocate for yourself & be like the many who do well.

Before considering surgery have full thyroid check.

You will need to know what your levels are now to compare with future changes.

You need

TSH

FT4

FT3

TPO & TG antibodies

Trab or TSI

foliate

Ferritin

B12

Vitamin D

claire-x in reply to PurpleNails7 months ago

Thanks, that’s helpful. I am taking carbimazole atm 2 X 20mg. Apparently I need to take this a while and allow heart rate to reduce before surgery can be scheduled.

The Goiter is causing swallowing issues but it’s more the cosmetic impact I’m anxious about, which I know is a bit vain.

But yes I think you’re right that it’s key to be knowledgeable in order to allow things not to go downhill fast and speak up.

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PurpleNails in reply to claire-x7 months ago

You don’t say if this is recent diagnosis or if you have had thyroid issue for while as surgery isn’t usually planned straight away - unless there are other urgent factors.

How long have you been taking 40mg carbimazole daily? Are you tested frequently to track levels?

Not everyone with Graves has a severely swollen thyroid which you describe, in some cases the right treatment (getting the thyroid levels in range) reduces swelling.

Thyrotoxic is another term for hyper. Not all hyper is caused by Graves. It must be confirmed & doctors do alway do this.

Toxic also often refers to nodules, which can be solitary or multiple throughout thyroid. Toxic nodular goitre (TNG).

Graves & TNG can occurs together and separately, but if you have autoimmune Graves usually some time is given to see if the levels resolve. After about 18 months doctors then suggest RAI it surgery, but many take it longer term.

If you have nodules they don’t remit & doctors say medication won’t resolve it. so doctors plan RAI or surgery much earlier. I have a large solitary toxic nodule on one lobe. I was offered RAI after first consult - wasn’t given option of surgery.

There’s a great deal to learn with interpreting & understanding results which we can help explain.

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Hennerton7 months ago

Weight gain after thyroidectomy is definitely not always the case, although I know you may have read that this happens. I had a thyroidectomy for Graves in 2006 and have never put on weight.

More vital is for you to extract from your endocrinologist an absolute promise in writing that if you are not doing well on Levothyroxine alone, you will be given the opportunity to add Liothyronine to your daily medication. Do not fall for the fairy tale of the “little white pill” , which no doubt has been mentioned to you. This is Levothyroxine, known as T4 and many people do well on this alone but a large proportion of thyroidectomy patients need the addition of Liothyronine, T3 to feel as healthy and well as they used to feel before the thyroidectomy.

The problems surrounding being prescribed T3 are mainly connected with the pharmaceutical company that supplied it to the NHS and grossly inflated the price. This has been the subject of legal matters and the price has reduced but there is still a problem with patients being allowed to have it.

I am sure you will receive many replies on this subject and I wish you well for a healthy future with T4 and T3.

claire-x in reply to Hennerton7 months ago

Thanks for your reply, it’s encouraging to hear people who don’t gain wait. I guess the people that do have issues are more likely to report so it may seem more common than it actually is.

I heard about the T3 issues not being routinely prescribed so here’s hoping I can access if need be.

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Hennerton in reply to claire-x7 months ago

Don’t leave it to “ hope”. Get it in writing before you go ahead with it.

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DJ3271 in reply to Hennerton7 months ago

I had a thyroidectomy on March 29 of this year. I put on no weight. I am a consistent 112, but I work out every day. My issue is getting my correct dosage of meds. I have been on Armour for almost 2 weeks and feel so much better than the levo. I don't know much about your circumstance, but if I had a choice to keep my thyroid, I would have. Best of luck.

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Lalatoot7 months ago

You need calories to efficiently convert t4 to t3. Folks who hardly eat disrupt this conversion. This can result in low ft3 which then increases hypo symptoms such as weight gain. The weight gain when this happens is fluid retention.

claire-x in reply to Lalatoot7 months ago

Thanks for your reply, I was unaware of fluid retention and the process for T4 to work. There’s so many things at play

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Omze7 months ago

For graves best treatment is thyroidectomy not rai , coz after rai ur dead thyroid won't be a problem but the lymph nodes near it will keep on producing antibodies and thyroxine adjust will be very difficult , u will require greater than upper limit ft4 to live a normal life , where as after thyroidectomy few lymph nodes are also taken out so less antibodies production

pennyannie7 months ago

Hello Claire and welcome to the forum :

It's only natural to be concerned, and wanting further explanations.

You are in the right place now as there is a wealth of knowledge, experience and understanding within this forum, with is supported by Thyroid UK - thyroiduk.org the leading charity for supporting thyroid health issues and where you can read around all things thyroid related.

You write that the goitre is causing you the anxiety and Graves is generally triggered by stress and anxiety so it seems you are in something of a vicious circle as one is fuelling the other.

Graves is an auto immune disease and generally driven by stress and anxiety and mainstream medical have no answers for this poorly understood and badly treated AI disease.

The NHS see Graves as life threatening if not medicated and allocate a window of around 15-18 months treatment with anti thyroid drugs which block your own thyroid hormone production.

It 's a bit like being on automatic pilot with the AT drug having control of your metabolism and basically, this treatment just buys you some time.

Slowly your T3 and T4 levels fall back down into their ranges and your symptoms hopefully alleviated.

The AT drug is generally titrated down as your levels drop as otherwise you risk falling too far through the T3 and T4 ranges and start experiencing the equally disabling symptoms of hypothyroidism.

When metabolism is running too fast or too slow for you there will be difficulties extracting your essential key nutrients through your food, no matter how well, healthily or clean you eat, and low ferritin, folate, B12 and vitamin D will compound your health even further so please arrange for these blood tests to be arranged.

if your breathing and swallowing are being compromised I would consider a thyroidectomy the most sensible solution - it's a clean and precise intervention - though yes it's surgery and all that that involves.

I have Graves Disease and was given RAI thyroid ablation treatment back in 2005 and I would not recommend this treatment to a living soul.

I think your research has thrown up the fact that life after a thyroidectomy is not necessarily a walk in the park and I believe this is because of the lack of knowledge but also the lack of thyroid hormone replacement options offered, although the options are readily available in the UK. as routinely the NHS prescribe T4 - Levothyroxine only.

Some people can get by on T4 - only :

Some people feel better replacing both T3 and T4 ' lost ' thyroid hormones :

Whilst others find themselves restored better when taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland, namely trace elements of T1, T2, and calcitonin plus a measure of T3 and T4 in each dose.

You'll probably have information overload now :

If you want your blood tests read and explained to you just be sure to include the ranges and start a new post with any new information and forum members can look back if they wish to read went before.

We are here to support you as best as we can, we can't physically hold your hand but here to help in whatever way we can.

I have learnt of my own situation back to front finding this forum around 6 years ago and if you wish to read around Graves the following website is beyond a doubt where I cut my teeth - elaine-moore.com

shawsAdministrator7 months ago

We have an advantage on this forum as members have various types of a dysfunctional thyroid gland.

Not all people who have a hypothyroidism gain weight. My weight hasn't changed at all. I am now prescribed liothyronine (T3) not levothyroxine (T4).

These photos may be helpful:-

stopthethyroidmadness.com/h...

Brightness147 months ago

I had a TT back in 2015 and was put onto Levo For the first time in my 69 years I gained about 10 lbs in a few months. I then joined this site, read, posted, listened to the good advice on here and bought NDT Thyroid s I have been on it for 7 years now. I lost the weight straight away and weigh 139 lbs 5ft 8 inches tall and 76 years old plus feeling well.It did take around a year to adjust the dose, patience is required. I never had graves, but a lump which moved my trachea. Before the surgery my thyroid was working perfectly.

Hopey627 months ago

I also am following Anthony William (medical medium) for over a year now. He truly is giving me so much hope. So glad I found him. He is saving my life ❤️Best of luck

helvellaAdministrator7 months ago

There are many members who have gone through hyperthyroidism and ended up having thyroidectomies.

I don't remember any members truly finding a "real problem" and managing to "Address the cause", thereby avoiding a thyroidectomy. Maybe someone will reply to say otherwise?

Quite a number might well regret having had a thyroidectomy but that doesn't actually mean they had a meaningful choice.

Some feel they should have been allowed to continue on anti-thyroid medicines indefinitely. There is good evidence that it can be reasonable to continue on carbimazole for many years.

Some find their hyperthyroidism goes into remission, possibly for many years, even forever, but there doesn't appear to be a good explanation of why that happens for some but not others.

There do appear to be some possible medicines, at least on the horizon. There is the possibility that extreme control of iodine intake would reduce the amount of thyroid hormone that could be produced (and this approach is sometimes used for cats).

There is also the language/thought problem that if people spend much time, put in much effort (and often money), and don't manage to get better, it is their fault. They need to put in more time, more effort, more money. Which can severely undermine their self-belief, their hope, and their bank account.

Batty17 months ago

I had thyroidectomy for cancer and I’m definitely was one of those people who gain a lot of weight after my surgery in spite of my constant working out everyday but I also developed a hideous psoriatic arthritis flare shortly after my surgery and I definitely believe this too contributed to my weight gain I just got to a point where I couldn’t walk and spent better part of 2 years bed ridden…. Honestly their is no way anyone can predict who will gain weight and who won’t and you just have to make a health choice based on your current issues but do yourself a huge favor get a complete thyroid panel done prior to Surgery or Rai so you have labs when you felt good … I regret not knowing this.

claire-x7 months ago

Hi everyone thanks very much for all the responses. It’s helpful. I would rather not get the surgery but Endocrinologist said that although the anti thyroid meds can stop the goitre getting larger, they can’t reduce the size of it as it is now - and that this would need either the RAI or surgery. I wouldn’t mind gaining some weight, as I’ve lost weight through the hyperthyroidism. But the stories of people gaining large amounts of weight in the space of months and hair etc falling out really worries me.

Batty1 in reply to claire-x7 months ago

Don’t worry to much about what happens to other people since we all react differently. How old are you?

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claire-x in reply to Batty17 months ago

I’m 30. I’ve always been active and slim but only slim through eating well and exercising

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Sooze017 months ago

Hi, I have Graves and had my Thyroid removed 9 yrs ago. I’m on 200 mg of Thyroxine daily. It took a long time for my body to acclimatise to not having a thyroid gland, however I have not experienced any weight gain and am balanced. You will feel when you are on the right dose and the Doctors may not agree if you are outside the so called “range” which i’am. I have had to assert myself to get Drs to understand but it does work. I’m glad I had my thyroid out as opposed to Radio ablation. My Graves was so out of control my life was in danger. You will always have Graves but you will manage better without your thyroid. Take care xx

claire-x in reply to Sooze017 months ago

Thank you - helpful perspective xx

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claire-x7 months ago

Thanks everyone for all the comments. It feels a bit better having a forum with people who experience similar issues xx