Graves Remission

[Milynda]

Can Graves’ disease go into remission? If so does that mean I don’t have it anymore?

[Cavapoochonowner]

Hi there.I have graves disease and I understand yes it can go into remision but you still have it.The symptoms can go away for any period of time, months or years but there is always a chance it may return .I'm currently starting my second lot of block and replace.My endo took me off meds to see how I went on and within 2 weeks mt t4 went up to 69 when it should be between 10 and 18.Some people achieve full remission but some don't.I think it's something to do with haw many antibodies your body is still producing.Hope this helps.

[SlowDragon Administrator]

Was Graves’ disease actually confirmed by testing TSI or Trab antibodies?

Early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Common hypothyroid symptoms include carpel tunnel, joint pain, brain fog etc etc

Fibromyalgia is often undiagnosed or inadequately treated Hashimoto’s

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with Hashimoto’s and Graves’ disease

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Graves Disease antibodies test

medichecks.com/products/tsh...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

[Milynda in reply to SlowDragon]

Yes Graves was confirmed by testing all of the above. However after a year and a half on Carbimazole, my thyroid immunoglobulins were tested recently and were<10 with the range being <56. I’m seeing an Endo who is about to take me off of 5 mg carbimazole. We have decreased it in increments over the past year. I still feel very jittery and hyper and I still take propranolol 2 times daily. All my levels are within normal limits so don’t know why I feel like this.

[bantam12 in reply to Milynda]

After partial thyroidectomy I was in remission for 30 years but then relapsed and Graves hit again even worse than before, it was impossible to control so I asked for RAI, wish I had done it sooner.

[pennyannie in reply to Milynda]

May I just interject -

You may well be within the " normal limits " but these ranges / limits are very wide and since you still feel jittery and hyper you are with symptoms that generally speaking should be resolved by taking the AT medication.

Maybe you are not ready yet for a dose reduction, but a dose increase, and maybe you may take longer to " find this remission " :

Graves is said to be a stress and anxiety driven AI disease :

The NHS pay little attention to the levels f the antibodies as currently they don't know how to control/reduce them.

This bit of the job could be down to you, by looking at life style and diet changes :

If you don't know of the Elaine Moore Graves Disease Foundation website you might like to dip in as Elaine is a medical researcher and also has Graves and has spent years researching this poorly understood and badly treated AI condition.

There are various sections dealing with the AI component of this disease and you may find this helps in your understanding the complexities of this disease.

P.S, Your thyroid is the victim in all this and not the cause as the cause is your immune system attacking your body.

[SlowDragon Administrator in reply to Milynda]

All my levels are within normal limits so don’t know why I feel like this

Please add the actual results

They may be within range, but not where you personally need them

Essential to regularly retest vitamin levels too. Have these been tested recently

Are you on strictly gluten free diet. This frequently helps many Graves patients

[pennyannie]

Hello Milynda and welcome to the forum :

Graves is an auto immune disease so as such, it's for life, as it's in your blood and DNA.

I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.

I was told the RAI would resolve my Graves but I might become hypothyroidism.

I have to say my hypothyroidism has been more challenging to treat than my Graves.

Graves is considered life threatening in some patients by some endocrinologists.

I think this is why the treatment options are so drastic as if you fail to " find remission " -

if even given the option to find it - within a set time frame when on the AT drugs, the hospital suggest thyroid removal or RAI ablation.

Some people do find this elusive " remission " but as its an autoimmune disease and would think more prone to further " triggers " throughout the rest of their life cycle.

[Lora7again]

Yes you can go into remission for many years but there is always a chance it will return unfortunately. Elaine Moore helped me go into remission after I asked her advice.

Here is a link to her site if you don't know about it.

elaine-moore.com/

[Because12]

Hi Milynda. Yes it can. I was diagnosed with Graves in 2011 and went into remission after treatment in 2013.

[Lora7again in reply to Because12]

What treatment did you have?

[pennyannie in reply to Because12]

Hello there

Did you RAI thyroid ablation or a thyroidectomy ?

I read you now take NDT so presume the NHS route with T4 only medication didn't work for you.

Did you try for a trial of T3 - Liothyronine ? I was refused because of my TSH being low/suppressed ay 0.01 though my T3 wasn't even at 50% through the range.

I had RAI ablation in 2005 and now self medicate with NDT managing lingering Graves, thyroid eye disease and hypothyroidism and much improved.

[Milynda in reply to pennyannie]

Are you going talking to me?

[pennyannie in reply to Milynda]

Ah, no, sorry, I was replying to Because :

But I am here if you want to talk anything through :

[Milynda]

Just carbimazole for about 18 months

[pennyannie in reply to Milynda]

Do you have any blood test results to share with the forum members :

Usually on AT drugs these will be a TSH + T3 + T4 and the ranges for each result ?

Do you plan to stay on the AT medication or are you being encouraged into a more permanent solution for the hospital and endocrinologist ?

[Milynda]

I just had a Thyroid Stimulating Immunoglobulin test and my result was <.10 I don’t know what that means.

[PurpleNails Administrator]

Anything under <0.56 is considered within the normal limit. So <0.10 result would be considered negative (inactive Graves if previous positive)

Did you have a above range result previously to confirm Graves?

My TSI results was same as this. I had been taking carbimazole 2 months when tested.

[041051]

Hi Milynda. I had Graves in the early 1980's. It went in to remission after a few years but in the 1990's my thyroid became underactive and has remained that way since then. Good luck

[Fruitandnutcase]

Yes, I had Graves in 2012. Was treated with block and replace for exactly a year. When my blood test results got to a certain point all my meds were stopped and I’ve been in remission ever since. I’d say I’ve still got Graves - it’s just in remission.

I’ve always done home testing to keep an eye on my thyroid levels and also to check that my vitamin D, B12, folate and ferritin are well up in their ranges.

I think it takes a while for your body test get used to the ‘new normal’ if you are anything like me you were probably hyper for quite a while before being diagnosed so (I think) it takes your body a while though get used to not being hyper. So don’t panic. I had been told that should I relapse I would have radioactive iodine- I kept telling the doctors I didn’t want it - I got on well with block and replace so I wanted to go back on that if I relapsed) so in the end I saw my own GP and asked if I could be forced to have RAI - no and if I refused could the hospital refuse the treat me - again no so I went home, ate well etc.

I also went totally gluten free around 2014. I take vitamin D3 every day and also vitamin K2 Mk7 Natto to direct the D3 to my bones. Also take vitamin C with zinc. I eat a healthy diet, avoid sugar, don’t eat junk food or fizzy drinks.

If you have an overactive Thyroid ask you doctor to refer you for a DEXA scan the keep an eye on your bone density - thyroid problems can lead to osteoporosis.