Positive rai experience?

[437jd]

Hi I’m wondering whether rai is my next move. (Diagnosed with Graves, block and replace fail after 4weeks. 4 months carbimazole - B & R 6.5 months = 10.5 months of treatment in total). I know my endo will advise me to have this treatment when I see him soon. I’m not an assertive person so I know I may well just agree with him..... not sure if that’s me being weak or the Graves talking...

[hattersteapar]

Hi, I too have Graves, I am was diagnosed about a year ago and was first just on Carbizamole, after about 4 months I was moved onto block and replace. When I was first diagnosed and saw the endo I was told that I would be on treatment for at least 12-18 months before maybe taking me off of the treatment. I would ask to go back on the treatment .

[madge1979]

We’re all different .. so what works for one might not be the answer for all

I was diagnosed Graves 3 years ago .. and was very ill indeed at that time .

To make a long story short ...I was out in Carbimazole at 20 mg

Per day for a couple of months then down to 10mg per day for another month or two and then down to 5 mg

It took that time fior me to begin to feel my awful symptoms were

Going away ... and the relief was totally amazing ..

My fear was that I’d become HYPO but it went well and I just tapered off..

It was at this time I began to take suppplements to feed my immune system that was the cause of my Graves’ disease .

Our immune systems are in our Gut .. 80% ... 90%

And so that’s where I began to make it calm down and leave my Thyroid Gland alone ... it worked and I’ve been in remission since .. and I feel great !

And you could feel that way too ..

I was determined NOT to Destroy my Thyroid .. every cell in your body has Thyroid hormone in it ... and it is vital to have it ..

I much prefer the idea of that hormone being mine .. and not a Synthetic.

I hope you try to learn all you can about the consequences of having no thyroid ... before you take that route

Very best of luck

Mx🌹

[Kari55 in reply to madge1979]

Hi madge1979, can I ask what supplements did you take? My husband has got Graves so we are trying to educate ourselves about the treatment and other ways he could help himself.

[madge1979 in reply to Kari55]

Yes of course

I’ll write in a few hours as rushing right now

Mx🌹

[madge1979 in reply to Kari55]

Hi Kari

Whilst Carbimazole was bringing my levels into line ... I decided that since it was my Immune System that was attacking my Thyroid Gland by trying to destroy it ... then it was my Immune System that I had to address ..

my doctor and Endo told me that was much too

complicated ..!! But I wouldn’t listen ..

80/90% if our Immune system are in our Gut ... so that’s where I started to address the problem

Many people get to that stage and think they can carry on .. staying well enough ....but they are not dealing with the

culprit ! The immune system

So I started to replace all that I’d lost due to the overproduction of the Thyroid hormone and the stress that had put on my body.

The following vitamins minerals and nutrients are

Almost always deficient in Graves sufferers ...

Vitamin B12 ( must be sublingual )

Vitamin B Complex

Vitamin B1 ( thiamine )

Vitamin D3 ( plus K2+mk7 )

K2 is necessary for the proper absorption of calcium )

Magnesium ( locks in Calcium)

Selenium ( Vital for thyroid function )

Zinc

Vitamin E

Vitamin C

Omega 3 Fish Oil

Q10 co- enzymes

ACIDOPHILUS HIGH DOSE

I take 40 billion / day

Seems a lot I know

But if you or your husband google these in relation to thyroid Graves’ disease

You will see how they are closely related and how together they will boost the immune system ... enabling it to be come strong again and calm .. leaving the thyroid in peace ..

They have kept me well and in remission and I will continue to stay that way I know .. now that I have tried and tested

You may also like to look up

Something Called

L Carnitine

Regular and Acetyl

ACETYL IS STRONGER and SHOULD BE USED WITH CAUTION

BUT

REGULAR WORKS WELL ALSO

Some people have used these

To bring down the production of THYROID HORMONE

Whatever your husband decides I wish you both well

Please update us in his progress

Luv mx🌹

[Kari55 in reply to madge1979]

Hi madge1979, thank you so much for taking time to reply in so much details. My husband’s white cells level had gone down after Carbimazole so he was off medication for a week and started PTU on Saturday. He isn’t feeling great on it so we are really worried that he won’t be able to tolerate it either. If this is the case, the only option is thyroidectomy, he can’t have RAI due to TED.

Re supplements, he has been taking multivitamin, selenium, vit C, zinc, vit D for over a year as we were hoping to conceive (looks like due to his Graves, we can’t). His vit D was recently checked and was 117 (50-200) so this is high. He would need to ask for his B vit levels to be checked. He is also taking probiotics, enzymes and omega 3. I will look at the l-carnitine and coenzyme Q (I take NAC and ubiquinol for my egg quality). I totally agree that it is an immune system that should be addressed, he is also following AIP diet - his IBS and reflux symptoms have greatly improved at first but since the issue with white cells his digestive system is also not great.

I’m terribly worried about him and feel hopeless not being able to help him. I’m not sure if his endo is helping him either as I have the impression she looks only at his hormone levels and nothing else.

Can I ask what brand of probiotics are you using? X

[madge1979 in reply to Kari55]

I’m sorry that your husband is not so good at the moment I feel for him as I know only too well how this disease affects you ... but I can assure you that if and when he gets it to the point where the numbers are all good .. it’s not hard to keep it there .. that’s been two years fir me and I feel great !

Pain free and no anxiety .. it definately can be done !

Please please please look at L Carnitine Before you go down the road of RAI or Surgery ... they both will lead to HYPOthyroidism and many in my family have gone that way ..

And it’s .. NO FUN !!

Not many people know about it it’s an amino acid

Which suppressed The thyroid hormone from overproduction

Best of luck

Mx🌹

[Kari55 in reply to madge1979]

Thank you Madge. I shall definitely look at l-carnitine. It is reassuring to hear that you achieved remission x

[madge1979 in reply to Kari55]

Holland and Barrett acidophilus 20 billion

I take 2x day

Mx🌹

[Valarian]

In the U.K., they usually expect it to take 12-18 months to achieve remission, so I would simply as for treatment to be extended for that length of time, and to consider all options (including long-term, low dose Carbimazole) at that point.

In the meantime, research RAI as much as you can, and make sure you understand all the drawbacks. In the end, they can’t force you to go down the RAI route . This will give you the confidence to make your case

Occasionally, people do pop up on this forum to say that they had RAI, and have been happy with the outcome. The thing is, if their RAI has been successful, and they are stable on thyroid replacement, they probably don’t have much reason to monitor forums such as this, so it’s difficult to judge the ratio of happy outcomes to unhappy .

What were your most recent thyroid results ? I’m in a similar position to you, perhaps a month or so behind, but on Carbimazole only. So far, I’ve had a few months of steady decrease, a few weeks of being hypo due to over medication, and am currently over again, and back on 40mg Carbimazole a day. They’ve already told me that they probably won’t take me off Carbimazole until the 18 month stage. My own feeling is that I would prefer long-term Carbimazole to RAI, but I can see the instability of my Graves’ (rather than simply being hyper) may be a problem.

[437jd in reply to Valarian]

I’m in the Uk too, Yorkshire. It amazes me how treatment varies from region to region!

[437jd in reply to 437jd]

I haven’t got a print out of my ranges yet but TSH was in range with slightly elevated T4, it was the tremors reappearing & a few other hyper symptoms that made me visit my Gp to get a blood test.

[437jd]

Thanks you all for your replies, they have all helped me so much. I am going to discuss repeating block and replace or ask about carbimazole titration ( I feel I respond well to it with no side effects) My dose now is 20 mg a day as opposed to the 40mg before, so at least I’ve lowered my dosage if nothing else. Thanks again.

[Valarian in reply to 437jd]

Given that (unless your T3 was massively over) you appear to have been very close to range, I wonder if your thyroid had already begun to sort itself out before the bloods were drawn. It varies from person to person, but I’ve only had visible tremors when I was well over range.

[437jd in reply to Valarian]

I agree but I also have additional symptoms so perhaps I just don’t cope with elevated T4. I was really ill last April, my T4 was 100 and something and I was admitted into hospital. I ignored the symptoms I’m having now and a week later Boom! I kept putting my mild tremors down to being hungry then! When the big tremors hit I went to my GP. So as you can imagine I’ll do anything to avoid that now.

[Valarian in reply to 437jd]

One of the probs with thyroid disease is that we all react differently, so not easy to predict what will happen. My FT3/4 were about double normal range when diagnosed, so not as bad as yours, but I nevertheless associate tremors with a very bad time.

I haven’t written if the idea of RAI, but it won’t be my first preference.

[437jd]

By the way 5 days on carb and my tremors aren’t visible, I can just feel it slightly in my body.

[madge1979]

Once your levels have all sorted out ... that is the time to STAY

By feeding your Ummyne System with the various things that Graves’ disease has taken from you .. your immune system has been attacking your previous Thyroid Gland ..

....so feed it ... and get it to leave your Thyroid alone ..🦋

Makes sense

Good luck

Mx🌹

[437jd in reply to madge1979]

Thank you, funnily enough I’ve been reading about the importance of berries this week so it’s a starting point on my diet overhaul!

[madge1979]

Sorry didn’t check before sending

[Espisnowwoman]

By no means r u weak!! Do u have other options? I was offered but i refysed it.

[437jd in reply to Espisnowwoman]

Episnowwoman I feel weak! I’ve no conversation in me, walking my dog is like running a marathon! I’m sticking with the meds though and refusing rai. Why did you refuse rai? How have you coped all these years with Gravesand not finally given in to have it?

[Espisnowwoman]

I refused ria because my endo could not guarantee that it would not affect other organs in my body. I did not give into my disease because iam a fighter. I also prayed to god everyday.only he can give health and miracles. Keep ur head up. Dont let this beat u!! U r not alone and iam only a text away.

[437jd in reply to Espisnowwoman]

Thank you, you’re such a positive thinker. I’m glad your prayers help you. I’m normally a glass half full kind of person but this relapse has knocked me down. Hopefully my up coming holiday will revive me so I can fight the fight!

[Espisnowwoman]

My mom always told me there is a god u just gotta reach out to him and thats what i did. All my friends tell iam the strongest woman they know. I had setbacks to but god is always there for u no matter what. U r his master piece. We all r. If u ever need to talk iam always here.

[437jd in reply to Espisnowwoman]

Faith is a wonderful thing. Thank you for your amazing support. 💕🌼🌺🌸

[Espisnowwoman]

You are so very welcome. It helps to talk to other people who are sick. I just looked up elaine moore .com she also had graves and had rai. I might get one of her books on graves.

[437jd in reply to Espisnowwoman]

It definitely helps to people on the same page, others just don’t understand. Yes I’ve looked at her site, now I’m going to google her books!

[Espisnowwoman]

Exactly people who are not sick just dont get it. I migh get one of her books. She said there are pros and cons to rai.

[437jd in reply to Espisnowwoman]

I found a post from Jan this year by Elaine Moore, she advises against rai for someone like me. She doesn’t recommend rai if you respond well to meds which clearly I do. How about you?

[Valarian in reply to 437jd]

I definitely think I will resist RAI if my thyroid can be controlled from one month to the next with a reasonably low dose of Carbimazole. Unfortunately, beyond the first couple of months, it’s been up and down like a yo-yo u. Ten months in, I’m back on 40mg/day for a month, then titrating to 30, so it’s as if I’ve had a second run with anti-thyroids before the first had finished. This time, I really hope my thyroid takes the hint!

[437jd]

Yes I suppose we all respond differently, I never got the weight loss symptom, despite it being the one I could have done with. Having said that I was eating a lot and didn’t gain any either!

[Espisnowwoman]

Only u know whats right for you. I read something about her. She said she went through rai and that created a host of other problems for her. Something that you really have to think about. I do believe what she says.

[Nat1972]

Hi 437jd,

I have just had RAI. After a second round of Graves. The 1st round worked with carbimizole over 18 mths but the second time the carbimizole didn’t work. Had lots of spikes while of the meds. RAI was suggested and I was worried but I can tell you it’s the best thing I have done. I initially felt lousy in the beginning for about three weeks afterwards as my levels spiked badly and I had lots of weird things go on but then everything changed, heart rate dropped and I felt the best I have felt in years. Now I am severely underactive -long story- and this morning took my first 100mg of Levo. Now I start my journey with no thyroid.

When you have Graves you are naturally wired and anxious but that goes away when your levels drop. It’s early days for me but so far so good, I am pleased I have done it now.