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has anyone had radio iodine therapy? if you did... - Thyroid UK
has anyone had radio iodine therapy? if you did what were the effects? Also has anyone had ayurveda treatment?
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ednafdg
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My friend developed PA immediately afterwards, & has had throat & stomach pain since. She preferred being hyper to hypothyroid.
Hello Ednafdg
I have Graves Disease diagnosed in 2003 and had RAI 1-31 iodine thyroid ablation in 2005 and deeply regret this treatment - I now manage lingering Graves symptoms, thyroid eye disease and hypothyroidism.
There are full details of my journey on my profile page - I am now self medicating and buying my own full spectrum thyroid hormone replacement and managing my own health.
You might like to read Professor Toft's 2017 article - Thyroid Hormone Replacement - A Counterblast To Guidelines - it is on this website somewhere, where on page 3 he states :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 131 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "
You might like also to take a look at the Elaine Moore Graves Disease Foundation website.
This lady has the disease and went through RAI in the late 1990's - finding no help nor understanding with her symptoms she wrote a book to help others who might be in a similar position. I purchased her book and along with this amazing website have put myself back together again, guess I'm a bit like a Humpty Dumpty.
Elaine is a medical researcher, and I found her book quite technical, but then I am dyslexic and so unwell, I was having difficulty reading and understanding anything. I believe her website to be a little more easily understood and there are various sections discussing alternative, holistic treatment options, diet and life style choices and the website also has an open forum much like this site where you can ask questions of the community and Elaine still takes an active role and ' steps ' in where she feels the necessity.
Graves seems to be a stress and anxiety driven auto immune disease.
The NHS do not know how to control, reduce and contain the auto immune component of this disease and simply treat the symptoms expressed.
There is a vaccine currently being trialled for Graves disease but to date - there is no cure.
Your thyroid is the victim in all this, and not the cause, the cause is your own immune system attacking your thyroid, and it is because your thyroid is such a major gland that the symptoms you maybe experiencing can be diverse, some seemingly odd, whilst others deemed to be life threatening.
Your thyroid is the controller of all your bodily parts, your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Living without a thyroid is not a simply fix and please do your research.
RAI is a toxic substance that slowly burns out your thyroid in situ:
RAI is known to be taken up to a lesser extent by other glands and organs within your body:
RAI can cause, or exacerbate thyroid eye disease:
RAI may compromise your immune system:
RAI may induce fibromyalgia type symptoms throughout your body :
Primary hypothyroidism caused by RAI is more difficult to treat :
Please do your research as there's no going back once you have had RAI and whilst I understand it is a difficult time, it is your body and no one would consciously drink toxic waste, or in fact have their throat slit open, would they ?
The treatment options for Graves are harsh : poison yourself or have your throat slit -
It's like being between a rock and a hard place, and when your brain feels frazzled it is not the best time to make, what might be, such a life changing decision.
Graves is a poorly understood and badly treated auto immune disease, play for time, and stay on the ant thyroid medication for as long as you possible, and there are people on this site who are on long term, low dose AT medication, and I just wish I had been given this option as it seems to me the most sensible.
I can't thank you enough for this incredible info, seriously, I have been feeling unsure about radio iodine therapy....it seems that something comes up and I don't have it. Probably for a very good reason. I will continue to try all the other methods....non invasive. I was on medication for my Endometriosis before which I am sure, in addition to the various stressful events in my life, contributed for my thyroid disease. I have stopped the endometriosis medication for almost two years and feel better. I will continue my ayurveda treatments and yoga therapy which has helped me immensely.
I will look up about Elaine Moore and Dr. Troft. A million thanks again, I am feeling so much more hopeful.
I will keep posting.
Regards
Hey there, thank you for your comments :-
RAI is the NHS treatment of choice, but this does not mean it's in your best interests :
Considering you are already displaying eye issues, this treatment is not appropriate :
RAI is a quick fix, 20 minute appointment and a discharge back out into primary care :
The NHS work to guidelines and reducing outpatient waiting times, not encouraging longer term AT medication, which costs more, and extends your time as an outpatient :
Professor Toft has recently retired hence, I believe, his scathing article found on here :
He was the physician to the Queen when in Scotland and his professional life as a leading endocrinologist well documented.
Graves is an auto immune disease - removing the thyroid doesn't deal with the cause which is your own immune system mistakenly going a bit haywire and attacking you :
Living without a thyroid comes with it's own set of problems as currently the NHS do not replace all the known same thyroid hormones that your own thyroid makes, and this leaves many patients unwell and being forced to purchase the full spectrum thyroid hormones for themselves, and self medicating, outside of the NHS system.
Please do your research and if at all possible keep this major gland, as it 'aint much fun living without your main engine and the conductor of all your bodily functions and parts :
Hi there! Haven’t had radio iodine but had been going to Ayurvedic doctor and taking herbs. It helped with my digestive system but it did not make any difference to my thyroid health at all. If anything I think it might have made it worse.
Many thanks for your reply. Which herbs did you take? Do you mind me asking. Also, do you have hyper or hypothyroidism?
These are the ayurveda supplements I take:
Am before eating:
Guduchi (immunity + metab) : 1/2 tsp.
Gorakhmundi (goitre): 2 capsules.
Before lunch:
1/2 tsp musta powder.
After lunch:
Kanchar (goitre): 2 caps.
Before dinner:
1/2 tsp musta powder.
1/2 tsp Guduchi powder.
After dinner:
Kanchar: 2 caps.
Did you take any of these? Mine are super strong in powder.
Many thanks for your reply.
Hi again!
Apologies for a delayed response!
I just dug out the info, this is what I’ve been given:
Acidact Tablets
Guluchyadi Tablets
Dhanwantaram Pills
Virechana pill
Balashwagandhadi Oil
As said, I felt that my tummy issues healed but it didn’t do anything to thyroid issues. I remember him saying that it would be hard to reverse the damage as I’ve been Hashi for 15 years.
Many thanks Anna, to be honest it is early to say. I am taking the herbs in powder and I first read Dr. Teitelbaum's book and did some further research and then I went ahead with it...I am not so sure but it is having some effects on me. It is like something is happening inside my thyroid I am just not sure what, I Pray for healing.
Have a lovely day.
No problem! Hope it works for you! Have you been prescribed them by an Ayurvedic doctor? Ayurvedic herbs are very potent.
I had first a medical/social/psychological/diet assessment and then detox and prescription of herbs by Dr.Anu in Dr.Wadke clinic. You can check their website. They seem genuine and I feel comfortable with her. I was told that the herbs can have side effects and I should adjust the herbs, she recommended me this as I work in the medical field. Main side effects were initially extreme itchy skin.
Sounds good! Did they tell you about your dosha etc?
My first appointment was fascinating. After looking at my tongue and eyes the doctor told me what my health issues are before I even said a word to him. I was like... how do you know! He also told me what I’m like, personality etc based on my dosha. Also advised what sort of lifestyle would suit me best - for me it’s working with people, art, craft. Said that my high pressure corporate job is making me ill as I’m not made for such environment. Interesting stuff!
I would never have RAI having seen how people struggle afterwards. I am on my second remission from Graves' and you can read my story on my profile page.
Many thanks for your reply. My radio iodine therapy has been delayed because of my exothalmos which is a problem with my eyes.
In that case Edna your RAI thyroid ablation should be cancelled as this treatment is known to cause and or exacerbate any eye issues you maybe suffering.
SlowDragonAdministrator
Look at testing vitamin D, folate, B12 and ferritin. These are frequently too low and improving low vitamin levels can help reduce symptoms
Strictly gluten free diet helps or is essential for thousands of Graves’ disease and Hashimoto’s patients
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 strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
I have had it without any problems.
I believe the residue of my thyroid after TT for multinodular goitre in 2005 could possibly have regenerated into a working thyroid gland. BUT was destroyed irrecoverably by RAI.
"You'll just have to take a couple of tablets each day afterwards to be well again" those b*****ds told me!!!!!
LIARS!!!!
On levo only after a TT you are most unlikely EVER to feel well again.
I could possibly have enjoyed a few additional years of normal life, but it was stolen from me by lies. And they continue to tell me LIES up until this present day, lies, lies, lies!!!
Hey Edna. I am sorry to say that I had RAI in 2014 and nine months later felt dreadful and have ever since. I’ve been told I have iron issues (I’ve had an iron infusion. Made no difference) have been told I’m depressed (if I wasn’t I am now lol) been told I have chronic fatigue syndrome (it certainly feels like it).
If you can, stay on carbimazole and keep your thyroid. I really regret it but I knew nothing back then
Thank you very much for the info, really helpful, I now eat very little food which contain gluten. I get very bloated with gluten and sugary foods.
Hi edna.
Did u have tests that confirmed your Graves?
Read in another thread, u have multinodular goitre and thyroid eye disease.
For those with thyroid eye disease, it is generally advised that surgery is a better option than RAI. It could help to control the amount of thyroid hormones released, thereby triggering a relapse.
Best wishes.
Hey thank you yes I have been diagnosed with Graves disease in 2016 and on meds since PTU and propanolol. Thank you for the advise.
Was your Graves confirmed via a TRAb test?
If you are an eligible candidate, there is the nonsurgical laser ablation for shrinking of nodules. It could potentially stop active nodules from causing high thyroid hormone levels.
Best wishes.
Many thanks, I am not sure but I think so. I was told I have a toxic multinodular goitre. The laser ablation sounds less toxic than radio iodine therapy and does it mean that it will not destroy my whole thyroid as I have heard RIT does? It sounds interesting, thank you so much, I will mention it to my Endocrinologist. Do you know anyone who has had it?
Having toxic multinodular goitre does not necessarily mean you have Graves. The same medication is initially used to bring down high thyroid hormone levels, though the eventual treatment is different.
For Graves, one can remain on the antithyroid drug if it continues to do its job of keeping thyroid hormone levels in check. Plus another eventual target is to bring down the levels of thyroid antibodies.
With multinodular goitre, steps have to be taken to address the active nodules causing the high thyroid hormone levels.
The difference between the two, is that Graves is an autoimmune condition. It is possible to have both conditions.
Yes, you are right. Laser ablation therapy preserves your thyroid. In media reports I have come across, in the successful cases, ablation shrinks the active nodules, thereby preventing them from spewing thyroid hormones.
No, I do not know of anyone who has had it.
Many thanks for your reply, I am aware I have both in light on my radioactive iodine uptake test results and positive thyroid stimulating immunoglobulin tests, in addition to my very low thyroid stimulating hormone and abnormally raised T4 and T3. As far as I know Thyroid stimulating hormone receptor antibody (TRAb) is less specific for Graves.
I have been researching on ablation laser therapy and there are very small non randomised studies often being applied for singular nodule thyroid issues where CA may be an increased risk of developing.
Yea, positive TSI does indicate Graves and can cause TED.
It does complicate things having both conditions. Can I ask if you have tried using carbimazole before?
TRAb actually is a highly accurate test for Graves. In my case, TRAb testing has been a life saver, and a test which I've used in the last 6 years to get my Graves under control and decide whether I should try for remission or not.
TRAb testing is also useful because there are so many studies and so much uaeful information available to guide treatment, as compared to TSI.
With regards laser ablation, it's being used quite successfully where I live. And yes, one has to be found suitable before it can be administered. Would it be worth checking if there's a chance your thyroid can be preserved?
Good morning, many thanks for your reply. I was on carbimazole initially but I am resistant to it so my endocrinologist changed it to Propylthiouracyl ( PTU). I have a multitude of nodules, do you think the ablation would still work? Anyway I will suggest it to my doctor. Also I am taking some ayurveda herbs as all my treatments have been cancelled. I am not sure what is happening but I feel that I am developing muscle wasting or something I have recently developed more palpitations and and weakness, But at the same time I am more constipated. But I can't reduce my propanolol as my heart rate becomes faster and irregular and I can't breathe. I am waiting for Cardiology to see me urgently as I am fainting due to some unusual palpitations which have additional concurrent symptoms. So it is difficult to say if I am more hyper or hypo. Maybe I will increase my meds. I have contacted my doctor but received no answer yet.
Have a lovely day
Edna
Here is something on Graves and the muscles -
Sorry, I got to this late. So much disruption with the coronavirus
: (
I read through some of your replies in other threads. So u are currently off the PTU preparing for RAI or u are back on it as it's been postponed because of your TED?
Any how, the most important thing right now is the "unusual" heart beats and fainting. It certainly sounds like the thyroid is running rampant. This needs to be tackled with utmost urgency as I think u can appreciate since u are a nurse.
Did your doctors advise you on the implications of irregular heart beats? This is a serious issue for hyperthyroid patients.
Muscle wasting. I did read of this somewhere in my previous readings. Let me try and find it. It's one of the more serious symptoms of thyroid dysfunction and i believe is linked to Graves. Btw, are u suffering any weight loss aside from the muscle wasting?
Herbs. I think u should consider stopping these as they might be having unintended effects on your thyroid. But u've been on them for some time? If that's the case, stopping them straight away may not be a good idea? Or might need to weaned off? Or could be just stopping right away?
What are these additional concurrent symptoms u have?
Stress, be it physical or mental, accelerates or makes the hyper or hypo symptoms worse.
Hello,
Many thanks for your reply. Due to the current situation, all my treatments have been cancelled, my radioiodine therapy and my urgent appointment with Cardiology. I am aware I need to be seen urgently but I have been chasing doctors, phoning and phoning and no one wants to get off their safe place and see patients like me who still need ongoing care . I am so exhausted myself that I feel breathless and tired of just talking.
I suppose if my symptoms worsen I have to call an ambulance. I don't know. I will email the patient liaison services and raise a complaint not for a fuss but I am concerned as my symptoms have evolved.
I don't think I have lost weight but I certainly have lost muscle. I can feel my body weak and floppy in some areas. I have a huge almost out of control appetite.
I have thought of stopping the ayurveda meds but when I do, I feel my thyroid suffocating me, it swells up seriously, so I have continued.
Other symptoms:
Knee pain, like my bones are more fragile, gastrointestinal disturbances sometimes. I feel irritable as hell, seriously I even avoid talking to people or family because I am just edgy.
I have been trying to carry on with meditation, prayer, sometimes a do yoga....I walk as much as I can despite current restrictions.
I am sorry if I sound angry, I am not really angry just frustrated and not knowing what the future may become given my current situation,
I hope you have a peaceful Easter,
I am still hopeful,
Many thanks again for your help
Regards
Edna
Edna, if you are seeing a doctor, please inform him/her the type of herbs you are on.
Thanks Ling but I can imagine even if I saw any doctor, what will ge or she say?
Sorry did not complete the message.
I will tell my doctor when I see him about my herbs. But I am sure I am not going to see him anytime soon. The doctor will only tell me to stop them, most likely because he or she will do anything to protect their medical registration and reputation, that they worked so hard to get.
I understand this. It not based on clinical evidence that the herbs don't work. Through ayurveda more specifically with Dr. Teitelbaum info I was able to change my nutrition and feel tons better with this, something my doctor or nutritionist will not do. Regardless of what the doctor will tell me, I will continue to take the herbs unless I feel I should stop...that is if my symptoms are getting worse..
That being said I am very grateful for your support and information...but believe me conventional doctors don't know it all and I have been victim of much medical negligence and harmful recommendations.
Edna, you do not sound angry and I believe you are a lovely person. I am really sorry to hear what you are going through, and I can empathise.
I think let's just focus on what needs to be done immediately.
Hearing about your symptoms, you are severely hyperthyroid, and the first thing to do, is to get yourself back on PTU. See any doctor who will prescribe it to you. Don't rely on that idiot who's put u on hold without medication, he's effectively put your life at risk.
Getting the thyroid under control will alleviate the symptoms. The muscle wasting means that the hyperthyroid state has been left too long without intervention.
The heart symptoms need to be controlled especially. Left as is, irregular heart beats, if it's atrial fibrillation, can cause a stroke.
I don't know if I should be saying this with the super contagious coronavirus going around, but if need be, go to the emergency services and insist on being seen. But make sure you protect yourself before going down. If u have an N95 mask, use it. THIS IS CRITICAL. People with thyroid issues could be more susceptible to the coronavirus.
Herbs. Sounds like they need to be weaned off and cannot be stopped immediately. But that should only be done when your thyroid hormone levels are stabilised, as only then will your body cope better as u rid your system of these herbs.
God bless you on this Easter. If u can, let me know how it goes. God bless you well!
Hello Ling, sorry for my late reply.
I have been on PTU since November and I have been increasing it myself as the my GP does not care about my symptoms and has been impossible to get hold of my Endocrinologist....so this is the situation. I called my GP practice and they said my T3 is high but the Doctor has decided to not take action can you believe it?????
So I have been requesting repeat prescriptions and adjusting the dose myself. For the last three days I have increased morning dose to 200mg and evening dose to 150mg and I can sleep better and the palpitations have reduced and my skin and hair are better less dry. .so I will take things into my own hands and use my own clinical judgement...I will continue with the herbs because I want to heal from the source of the problem as taking tablets is only suppressing it which is great but I want my thyroid to heal which I believe it is happening as I notice changes in my goiter....
I have been adjusting my diet to non processed and read the incredible book from Dr. Teitelbaum and from Dr. Barry Durrant-Peatfield. I look for any body therapy strategy I feel is helping such as yoga, meditation prayer, thinking on purpose, thinking of my goals and dreams in life and what really makes me happy.
I really believe the mind has a way to connect and help the body so I am trying anything potentially beneficial to help myself, after all is my body my own feelings my own experience that, with all due respect no doctor knows about unless they had the disease this bad.
I have emailed PALS from the Hospital to review my situation and I know they will help me also despite me being completely abandoned or forgotten from my doctors.
Hope you had a lovely Easter, going for walk for some Sun
....have a lovely day and many thanks again...
It is a relief to hear u are on the PTU.
Your GP is unbelievable as well.
I hope your email to the hospital will ensure that you get to see a specialist soon.
And please inform any doctors u see, of the herbs u are taking.
Wishing u all the best ...
Thank you Ling you are so reassuring. Seriously, many thanks. I went to my GP and got a copy of my blood results from a month ago.
These are my results:
TSH less than 0.01 mu/L
Free T4 18.2 pmol/L (9-22 pmol/L)
Free T3 8.8 pmol/L (2.6-5.70pmol/L)
The palpitations come and go.
Feeling less dizzy, thankfully.
and my GP told there is nothing to do.
Tc care,
Thanks again
With love
Edna
The high FT3 accounts for the heart symptoms.
I think u should get a blood test every month since u are self-titrating.
The goal still has to be to see an endo. With both Graves and toxic multinodular goitre, it will not be easy keeping the thyroid under control.
In most cases of toxic multinodular goitre, RAI or thyroidectomy is the definitive form of treatment. This is something not to be ruled out if u know your body is significantly affected or overwhelmed by the dual conditions. The muscle wasting and heart symptoms for example, are considered serious effects that have long term health consequences.
In this difficult time, I sincerely hope and pray that u find soon, the care and help that u need.
PS. I've just noticed that u posted several messages which I missed out : (
Thank you Ling.
How are you?
I have been feeling better after much meditation, prayer and gentle yoga exercises for stress and anxiety which I have been taking with The life centre. I would really recommend.
I feel more stable so will continue to monitor my symptoms daily. I also decided to do a deep research on nutrition and adjusted my diet.
I have been looking into some free online courses with futurelearn.com/
Life must going in the best way possible.
Have a love day,
Edna
Hi edna, I'm really glad to hear u are feeling better : )
What adjustments did u make to your diet?
Hello Ling,
I am so sorry for not having replied earlier.
There has been a lot going on.
The adjustments I have done really are diversity, and aiming for most least processed foods, organic, fermented foods such as sourdough and most importantly pay attention and listen to my body to my palate. It is funny but your body tells you what food you should not eat but the issue also is that some foods are also addicted. I don't consume refined sugars. i eat organic chicken and filtered water.
There are many other adjustments but really and truly is a holistic way of looking after myself.
Tc care
I hope you are well.
I have less joint pain and been able to manage better my symptoms.
Kind Regards
Edna.
One other thing edna.
When u are on PTU, factor in that u will need regular monitoring through blood tests. In of of your posts, u wrote that u became hypo from too much meds. I'm not sure where the slip up was, but u should make sure that the doctor gives u a return blood test date at a "correct" interval so u can titrate the PTU as needed.
I'm not familiar with PTU usage, but feel free to let me know if u need help searching out more info. Or u can put up another post. There is a fair bit of people out there who have used PTU.
I have had blood tests done a month ago and two weeks ago. No one can give me the results...but they are high...I know this...
I am not going to chase any doctors, I am seriously fine with that.
I am going to listen and pay attention to my body and act accordingly....I have increased my own PTU dose.
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