hi everyone, I’m new here’ but not new to thyroid issues unfortunately. I got diagnosed with graves in 2017 after the birth of my first baby. Since then I have had countless relapses, they’ve all been managed with Carbimazole/ptu but as time goes on the time between relapses is getting way shorter and it’s taking longer to become euthyroid.
My endo has recommended definitive treatment, I’ve refused RAI but am considering a TT. I’m sick of being on this graves rollercoaster and every time I’ve to increase my dose of Carbimazole, I get so worried about the serious side effects. If I get a mouth ulcer or a sore throat I completely panic. I’m finding the whole thing very stressful
My endo has said if I get the TT it will be so much easier to manage. I’ll take thyroid hormone replacement and only need to get bloods done twice a year and the medication is really safe. This is all so appealing to me right now
but I’ve been reading posts on this forum toddy and to be honest it’s made me feel sick. So many people saying definitive treatment is the biggest mistake they ever made and how they’ve felt miserable since. I’m just feeling terrified now and feel like I’m stuck between a rock and a hard place
has anyone any positive stories or advice? I’d greatly appreciate it
thank you
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Rowan4
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You refer to treatment and relapses. Do you take anti-thyroid (AT) drugs, then stop when your thyroid results reach a certain point, wait for relapse, then start AT drugs again?
One strategy that works for some people is to go on "Block and Replace" (B&R). This involves taking sufficient AT drugs to completely block the production of hormones from your own thyroid, then replace the missing thyroid hormones with Levothyroxine.
Some people stay on B&R for years. It can prevent thyroid hormones from going up and down like a yoyo, and may eventually prevent relapse.
If you haven't tried this it would be worth trying.
so far I have stayed on atds until the endo thinks it’s sFe for me to come off them, when my trabs are negative. This time I was tapering down my dose from 10mg to 5mg Carbimazole ( mu trab was negative at the end of feb and my ft4 and ft3 was in range) and in my recent bloods last week my levels had shot back up
I have never tried block and replace, mu endo has never suggested it, she did say there is some recent research to say staying on low dose of Carbimazole may work at keeping me euthyroid rather than coming off it completely when everything has stabilised - that’s where I was hoping to get to this time but honestly I don’t think staying on low dose will work for me as my thyroid seems to be so volatile
Can you explain why block and replace can work instead? I’m very open to trying alternative therapies
I’m in Ireland. I’ve never been tested for Celiac disease but I have absolutely no symptoms and when I was first diagnosed with graves disease In 2017 I went off gluten completely for 3 months. When I reintroduced it again I felt absolutely nothing
I think I will just get tested anyway though after the summer, I have health anxiety and I am trying to cut down on the number of blood tests in getting as it really causes me a huge Amount of stress
I bafenr had my vitamin levels tested in few years for the same reason. When I first got graves I became obsessed with doing all those tests ( they were normal) and it really fuelled my health anxiety. My anxiety is little bad now so I’m reluctant to get blood tests done as if something is not normal it will send me into a bad way
I’m currently taking vitamin d spray, b complex and omega 3 though and also L carnitine once day
just to say whenever I’ve had my vitamin levels tested they have been good. In my most recent pregnancy my iron was very good without supplements. I have a very good diet but am not gluten free as I felt no difference when I tried it for 3 months and I just it so restrictive
From what I’ve read you stay well managed on anti thyroid until you stop completely & then relapses occurs.
There’s lots of research that long term - very low dose can help with this.
The other option of block and replace involves a much higher dose of antithyroid to completely block thyroid function & then a replacement dose of levo (L-T4) to restore thyroid levels.
Your system should convert adequate level of FT3. B&R option is good option if tritiation alone doesn’t stabilise successfully & levels drop / rise unpredictable or if FT4:FT3 balance is so disproportional one is below & one above, usual low FT4 while FT3 it above range still.
Your specialist likely prefer the hyper is permanently prevented as then you can be passed back to primary care. Doctors view hypothyroidism easily treatable & while that true in most cases, it’s not true in every case. Not everyone has complications after RAI or surgery, many do very well once stable.
There’s a significant number who are poorly managed after treatment / surgery.
Many issues occur as GPs often treat by TSH alone which can result in under replacement, or the body doesn’t convert well to FT3. Levo is considered the only treatment option offered by mainstream medicine.
Ensuring you track results & maintain optimal nutrients can often help guide the best treatment.
Graves is an auto immune disease for which currently there is no cure and your thyroid is the victim in all this and not the cause.
The cause is one of your immune system having been triggered to attack your body, rather than defend it and the question is, what has triggered your immune system to turn and attack your body and why does this keep happening.
It reads that this all happened after the birth of your child - was this a traumatic period in your life, as Graves is said to be stress and anxiety driven ?
I read you did have positive and over range Graves antibodies - generally written as either a TR ab - a thyroid receptor blocking or a TSI - a thyroid stimulating antibody and at any one time these 2 extremes of opposing antibodies can be attacking your body and causing a roller coaster of symptoms.
There will also be periods of relative normality when these 2 sets of opposing antibodies burn each other negating each others power leaving you feeling relatively normal.
The idea of the Anti Thyroid drug is to put you into a ' holding position ' - much like that of an aeroplane waiting to land - and the most recent research is suggesting that this is the better treatment option, long term for the patient.
and yes, of course it is all a question of the degree of inconvenience caused as some Graves patients undoubtedly will decide that life is intolerable and choose to loose their thyroid :
And yes, I do not not understand why RAI thyroid ablation is even offered as a treatment option in a health care setting :
It is horrible having health anxiety and you must be worn down by keep repeating the same failed treatment option and would suggest you try Block and Replace.
Stay on the PTU if you are worried about the side effects of Carbimazole - if you have had the side effects associated with this drug.
With B & R your thyroid production is fully blocked and you take a measured dose of T4 - Levothyroxine every day so your T3 and T4 levels remain stable and you do not fall too far through the ranges and experience the equally disabling symptoms of hypothyroidism.
You might like to read around Graves as it is a poorly understood and badly treated auto immune disease and o 2 patients follow the same pattern and why mainstream medical have no real know base and understand or know how best they can help you ride out this immune system attack on your body.
Graves tends to only get diagnosed when the thyroid is involved - because the thyroid is a major gland and you can't live without a thyroid and currently, after a thyroidectomy, T4 - Levothyroxine is the prescribed thyroid hormone treatment option.
I have Graves and told the AT drug - Carbimazole was too dangerous to stay on long term and at my very first endo appointment told that I was due for RAI the following year in 2005 and I knew no different and accepted what I was told.
Treatment in primary care is somewhat limited and it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading seen in isolation.
T4 - Levothyroxine stopped working for me about 8 years after RAI and I fell into this forum, and Elaine Moore's website, books and forum, looking for my own answers as I found no help nor understanding in the NHS and was refused all other thyroid hormone treatment options.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
It seems to be common knowledge that T3 - the active hormone is around 4 times more powerful than T4.
Some people can get by on T4 only :
Some people find T4 seems to stop working as well as it once did and by adding back in a little T3 - likely at a similar amount to that which the thyroid produces - restores hormonal T3/T4 balance and health and well being are improved.
Some can't tolerate T4 - Levothyroxine and need to take T3 - Liothyronine only :
As you can live without T4 but you can't live without T3.
Whilst others find their health improved by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
I now self medicate and buy my own thyroid hormone replacement and now 5 years into taking NDT and am much improved and run my own yearly full blood tests and manage my own core strength supplements of ferritin, folate B12 and vitamin D.
Hi , I was diagnosed with Graves after the birth of my first child in 1987. I was very unwell and extremely hyper, dropped weight down to about 6 stone. I was put on the raft of medication to try and slow everything down, carbimazole, propranolol and valium. When I saw my consultant( diabetic specialist) he wanted to do RAI but when he discovered I wanted more children he said I needed to have thyroidectomy and was given no other options. I knew nothing about Graves or the thyroid so basically did as I was advised at that time. They took 7/8ths of my thyroid out, consultant said it was "a mess" ?. Anyway, nearly 36 years later I am taking Levothyroxine with only the occasional blip. I was relieved to start feeling better after my thyroidectomy but if you have options then consider everything carefully and don't be pushed into anything without all the information. Good Luck
Hello there, I have a positive story.I was diagnosed with graves in 2018 and tried the usual treatments.I chose to have a total thyroidectomy last June and I do not regret it.Is my life perfect now? No, but it is alot better.I too was sick of all the ups and downs and feeling awful.Things are alot better for me.I am on thyroxine only and going through a dose change at the moment.I think you need to get as much knowledge as you can about your condition,I have had private bloods alongside my NHS bloods.I can afford to do that but probably not long term private treatment.It has taken time to recover from the operation, but I prepared myself for that.I would still have the operation again given what I know now.If you would like to read my story just click on the picture at the side of my name and there it is.I have kept it up to date.Wishing you all the best.PS. If you have any questions I will answer them as honestly as possible.
hi, thanks so much for all of this. I read your bio on here and have a question if that’s ok! I saw your endo was worried about your white blood cells when you were on Carbimazole. Did your endo check them periodically? Mine says she doesn’t check them unless I get symptoms buy I’m wondering should I just ger them checked myself now that I have had to increase my dose of Carbimazole. It’s just my health makes me nervous to do this!
Hello there, no problem with questions,ask away.My endo didn't check my white blood count regularly, only if I had a sore throat or flu like symptoms then he tested just to be safe.I think problems with low white blood count and carbimazole are quite rare but just something to be aware of if you have a sore throat.It normally is just that and nothing to worry about.I can understand your anxiety as when my graves was bad I was very anxious and could go on and on about things(my poor family).Hope that answers your question and reassures you that you don't need to keep checking this yourself.
Having a total thyroidectomy was the worst decision I've ever made in my life. No medicine can ever replace what a human organ does.
It's not the same. Your body will need to more work converting levothyroxine to active. That requires many factors. It's affected my heart and now I'm on heart medication and suffer chronic fatigue and insomnia.
Try get a second opinion or even think about a subtotal removal ( where they leave a little bit in)
Trust me conserve your thyroid. It controls so many functions in the body. Every cell from your head to your toe.
Hi Rowan, it is a difficult decision and not one to take easily. I had mine out (TT) 10 years ago. It is a journey to get equilibrium with your body. We are all different and of different ages which can all impact how medication works for us. My advice would be that belonging to this forum (I'm recent and wish I'd known years ago) can help guide your journey. I'm really happy with where I am having no thyroid and am on a journey to really understand my body, how it works and how it uses what I put into it to get my best life. The tips from those on here have really helped. I'm losing weight, (avoiding gluten and majority of carbs) challenging my Dr with informed knowledge (very few understand thyroid probs and only use basic NICE guidelines) and using supplements effectively. One tip - if you're feeling anxious or have anxiety, treat that before making life changing decisions. Best of luck with your journey.
I had my entire right lobe and middle section removed in September 2022 after growing a rather fast growing hot nodule and being diagnosed with thyroitoxicosis
I was offered RAI and I refused and went straight for surgery and for me it’s the best I could have done
Yes I have had some weight gain but it still only 8 months and I feel so so much better than I did before my surgery
For me it’s worked and now it’s all about getting me levelled out
I’m on Levothyroxine and minimal side effects as I said the main thing is weight gain
I’ve put on just over a stone in weight
I’m only 5ft and pre surgery I weighed just 8.5stone 56kg
It’s only a dress size I’ve gone up but I’m now back at the gym and eating clean and healthy with selenium and iron
It’s worth it in my opinion as it worked so well for me
Hi Stacey. I’m just wondering how you are getting on now? Have this stabilised for you yet? I’m still scheduled for a total TT and more nervous than ever!
Hi, I was diagnosed with Graves 10+ years ago and had the medium doses of RI in 2013 as it was not sorted out with Carbimazole - I'd be off it for 4 weeks and my results were back sky high. It took about 6-9 months for my levels to sort out with Levo, and I have been taking 100/125 mg on alternate days ever since, with no relapses etc. Good luck.
In my 50s I was diagnosed as having Graves’ disease. When thyroid meds didn’t work radioactive iodine was suggested. My daughter had Graves at the age of 12 and subsequent RAI and it was successful. She later gave birth to a healthy daughter who is now about to marry. I had the RAI and have taken thyroid meds for over 20 years. Currently I am on 100 mcg Levothyroxine and 10 mcg (5 am/5 pm) Liothyronine. My TSH continues to be <.02 but I have few hyperthyroid symptoms. I believe I am one of those folks for whom the TSH is meaningless as my T3 and T4 tests are in normal ranges. I am 79 and doing great healthwise.
just wanted to thank everyone so much for replying to me! It’s so nice of all of you to take the time and I am really grateful.
I’m meeting my endo in a few weeks and have lot to ask about future meds and other things. Thanks sp much to you coe all of the info and for sharing your experiences
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