Hello, I have been asked to weigh up treatments for Graves Disease. I am being offered either RAI or a thyroidectomy. Advise appreciated

[Mrsegg]

Having had lemtrada treatment I developed Graves’ disease and have taken 20 mg of carbimazole for 2 years but things are still not settling down

[bantam12]

That's a question only you can answer, everyone has there own experiences and opinions but you have to do research and weigh up which is best for you, don't be swayed either way by others stories. I would say to ignore any advice from people who haven't actually experienced either procedure !

[Mrsegg in reply to bantam12]

Ok. I was just putting feelers out. Trying to weigh up the different options. The both feel quite dramatic 🙏🏼

[bantam12 in reply to Mrsegg]

The end goal is the same it's just how you choose to get there, I've had both treatments and still here to tell the tale ! Personally block and replace didn't work for me and long term Graves left me with heart problems but that's just me.

[jimh111]

Never had Graves'! General comments. If you have thyroid eye disease RAI is not a good option. Have you been offered 'block and replace'? This is where they give you a higher dose of carbimazole and replace the missing hormone with levothyroxine giving stable hormone levels. This may be a good option in at least the short term as I assume it will be some time before you can have RAI or thyroidectomy. Some patients with personal experience will be along soon.

[Mrsegg in reply to jimh111]

Thank you. I will look into Block and replace 👏

[Mrsegg in reply to jimh111]

I just thought I would let you know that my Endorcrinologist has agreed for me to try Block and replace. So I wanted to thank you for your advice

Nikki

[pennyannie in reply to Mrsegg]

Excellent - well done and Good Luck :

No thyroid hormone replacement works well unless ferritin, folate, B12 and vitamin D are optimal in the ranges, and I read ferritin has to be over 70 for the body to be able to convert of T4 into T3 and I know, I feel even better if I maintain my ferritin levels at around 90/100:

If you haven't already started to monitor your dose v symptoms - plus and or minus -

it might be an idea as this will assist the endo in adjusting and finely balancing the AT drugs along with the T4, and it's better for you to have some input and feel involved in your treatment, rather than just being a mathematic equation.

[Mrsegg in reply to pennyannie]

I think you are so right. Thank you for taking the time and for your wealth of knowledge

It really appreciated

Nikki

[jimh111 in reply to pennyannie]

"I read ferritin has to be over 70 for the body to be able to convert of T4 into T3". This is an old chestnut that is simply not true. Most people have a ferritin below 70 and do convert T4 to T3. This came about when a doctor with a website extrapolated an experiment on rats that showed that low ferritin inhibited deiodinase. They then took a paper from a company that sells 'iron shampoo' which claimed ferritin needs to be above 70 for perfect hair.

I agree with your general comments and no doubt patients feel better with good vitamin / mineral levels. Some deficiencies are caused in part by hypothyroidism and when hypothyroidism is resolved patients feel better and deficiencies are corrected.

I don't mean to get at you, just want to kill off the claim that ferritin needs to be above 70 for deiodinase to work. This was a reckless claim for a doctor to make and I believe shows a greater desire for business than patient care.

[pennyannie in reply to jimh111]

Thank you Jimh -

I stand corrected and will refrain from old chestnuts !!

[jimh111 in reply to pennyannie]

Fresh ones falling off the trees in a few months!

[pennyannie in reply to jimh111]

I look forward to you sending me a couple !!!

[pennyannie]

Hello Mrsegg

I too have Graves, diagnosed in 2003 and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism. I deeply regret having this treatment and you can read my back story on my profile page, and my numerous posts, should you wish.

I am now self medicating and buying my own thyroid hormone replacement as the NHS does not routinely prescribe anything other than Levothyroxine.

I have no knowledge of your existing health issues and the medication you are currently taking and I'm not qualified to say anything of any substance.

What I would suggest you do in your research is pose the same question including your current medication and other health issues and personally contact Elaine Moore. This lady has Graves and went through RAI in the late 1990s. and finding no help with her continued ill health started researching herself.

She was already a medical technologist so probably better placed than most of us and she then wrote a book to help others who might be in the same situation as herself.

I found her book quite technical and having already had RAI way back in 2005, I was reading Graves Disease A Practical Guide - in 2015/16, when very unwell, and reading what I didn't want to really know, as it was too late for me.

Roll on a good few years and there are several other books by Elaine Moore and now she also takes an active role in her Graves Disease Foundation website where there is the most comprehensive research, papers, and experiences of thousands of patient experiences with an open forum, much like this amazing site where you can ask questions of the community and learn from others going through this process.

It is also interesting that in his lead up to NHS retirement, Professor Toft the eminent endocrinologist and physician to the Queen when in Scotland, wrote a very interesting article in 2017 in which he states he is now reluctant to refer his Graves patients for either RAI or surgery, irrespective of the patient's age or number of recurrences of " hyperactivity " and is suggesting long term AT drug medication a better option.

Prof. Toft's article is on this website, in full, somewhere, and makes very interesting reading - entitled Thyroid Hormone Replacement - A Counterblast To Guidelines and was published in the December 2017 issue of The Journal of the Royal College of Physicians of Edinburgh :

Graves does appear to be a poorly understood and badly treated auto immune disease.

The thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your body, more especially the thyroid, and since the thyroid is such a major gland, the symptoms expressed can be seen, by some, as life threatening.

[asiatic]

As other members have commented only you can decide. You should have been advised there are 3 options all with pros and cons which you need to consider. I chose block and replace which works well for me. I would not have an irreversible procedure before trying this first. Doctors maybe reluctant to suggest it as it can take regular monitoring to find the lowest effective dose and reach the correct balance of the block and replace.

[Koola]

Hi Mrsegg, I don't know what lemtrada treatment is. Also, we're all different, but here's my story & advice: I had RAI in 2009 after 20 y. of hyperthyroidism. Docs & endos first kept telling me I had to have surgery then, like you, to choose between RAI & surgery. Everyone kept telling me I'd feel great afterwards, including a friend & a few acquaintances who'd done one or the other. I wasn't feeling bad! But all said it was dangerous to take Carbimazol for so long.

How I wish I had not done RAI, and educated myself to other possibilities instead. After a first difficult year, I was okay. But in 2015 , hypothyr. moved in, slowly at first with weight gain and then "all the usual suspects" i.e. symptoms worsening. The last 2 yeas, accelerando. Energy level so low, I barely manage to take care of basics.

So, I advise you to take your time, inform yr.self before you do anything irreversible.

[SlowDragon Administrator]

As you have Graves’ disease and MS it’s incredibly important to regularly test vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

Are you on strictly gluten free diet?

Low vitamin levels affect Thyroid hormone

Poor gut function with any autoimmune disease can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

MS and gluten intolerance

multiplesclerosisnewstoday....

pubmed.ncbi.nlm.nih.gov/303...

glutenfreesociety.org/multi...

[humanbean]

I think you really need to know what your results and reference ranges were for any blood tests you've had in the last three years i.e. since before you were diagnosed with Graves' Disease. And you need to get hold of those results from both your GP and the hospital(s) you've been seen at and treated by.

To ask for three years worth of blood test results and other reports from the last three years you will get a more complete set of data with a Subject Access Request. To read about how to write one of those, see this link from the Information Commissioner's Office. If any of the organisations you write to don't respond they are breaking the law.

ico.org.uk/your-data-matter...

One of the problems with having high levels of thyroid hormones is that they can occur in Hashimoto's Thyroiditis (which eventually leads to being hypothyroid i.e. underactive), and in Graves' Disease.

Generally, based on results we see on this forum, Hashi's often presents with high levels of thyroid hormones but they aren't nearly as high as those seen in Graves' Disease. The only way to tell between the two conditions is to test for the various different kinds of thyroid antibodies.

labtestsonline.org.uk/tests...

In the above link click on all the + signs below "What is being tested?"

Treating a patient with Hashi's with anti-thyroid drugs doesn't work and is completely inappropriate because the causes of the high levels of hormones in Hashi's and Graves' are completely different. This is why it is essential that the right thyroid antibodies are tested for.

Don't be rushed into killing off your thyroid with RAI or having your thyroid removed. You need to be absolutely certain that this is the right treatment for you.