Hi, I have rai booked imminently & want to know for sure if my levels warrant it -
TSH - <0.01
T3 - 8
T4 - 16
I’ve been told it was toxic nodules, now 2 years later told by a different consultant it’s graves? The consultant secretary said they mean the same thing when overactive? Is this correct?
I’ve been on carbimazole & now on pcp.
I have been booked for 600mbq, is this too much for my levels?
I would be grateful for any advice. Thanks.
TSH - <0.01
T3 - 8
T4 - 16
We need the reference ranges to understand your results.
Thanks for your response.
Where do i get those from? Those results were on my letters, with no other reference?
Whoever sent the letter should have that information and should have supplied you with it. Phone them up and ask.
The reference ranges matter because they aren't always the same from every lab.
For example, a T4 result of 16 with a reference range of 7 - 14 is actually over the range. If the range is 12 - 22 then a result of 16 is just under mid-range. The range makes a difference to how a test result is interpreted.
Hello Allthewashing and welcome to the forum :
I do not believe they are the same health issues at all :
What is Pcp - do you mean Ptu - Propylthiouracil ?
A nodule can cause hyperthyroidism - and managed with Anti Thyroid medication long term :
Graves Disease is an Auto Immune disease and diagnosed when your immune system turns and starts attacking your body generally the thyroid and or eyes - do you have any diagnosis letter stating the cause of your hyperthyroidism ?
Do you have your initial blood tests showing - TSH + Free T3 and Free T4 reading / ranges ?
Were any antibody readings run and positive - TPO - Tg AB - TSI - TRab or a TSH Thyroid Receptor antibody result and cut off number ?
We need the ranges for the above T3 and T4 readings please :
I was given RAI thyroid ablation for Graves Disease back in 2005 and deeply regret this treatment option and quite why it is still a first line treatment in what we understand to be a health care setting is a mystery to me :-
We do now have some research you may like to consider :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
Thanks for your response.
I do mean ptu sorry 🤦♀️
I only diagnosed with an overactive thyroid a month after being diagnosed with rheumatoid arthritis as they picked something up in my blood tests.
Following that I have had only telephone consultations & a diagnosis letter 2 years ago stating I have an overactive thyroid due to t3 toxicosis from an ultrasound which showed a benign multinodular goitre? Then after another telephone consultation I was diagnosed with Thyrotoxicosis likely secondary to multinodular goitre. (Which I think are possibly the same but worded differently in each letter)
Then last month I finally saw a consultant face to face 2 years after diagnosis and received the typed notes from that meeting yesterday and it says an overactive thyroid due to secondary Graves’ disease? Hence the confusion as it hasn’t been mentioned before & nothing was said about it in the face to face meeting, it’s only in my consultants letter, that’s why I called his secretary?
I shall look through my drs letters as I do have a few detailed blood tests so maybe the reference ranges are there? I honestly didn’t even realise there were different ranges depending on the hospital- I thought it was the same across the uk. I shall look tomorrow & post on here when I find them.
Ok then - suggest you cancel this imminent RAI thyroid ablation appointment - and give yourself some breathing space while this all gets sorted out:
Why did you switch from the Carbimazole - are you better on the PTU Anti Thyroid drug ?
Or do both AT drugs cause you more health issues and you can't tolerate either ?
-
Hi pennyannie, I switched from carbimazole as I was gaining weight & didn’t feel well on it, I think I’m slightly gaining on PTU, but not as much.
Both Carbimazole and PTU are Anti Thyroid drugs and block your new own daily thyroid hormone production and if on too high a dose of either - you will put on weight as your metabolism will have been slowed down too much.
When metabolism is slowed down too much - as in hypothyroid or metabolism runs too fast as in hyperthyroid the body struggles to extract key nutrients through food no matter how well and clean you eat - and your core strength levels of ferritin, folate, B12 and vitamin D can nose dive through the ranges compounding your ill health further.
Do you have any current readings / ranges of these core strength vitamins and minerals ?
How old are you ?
RAI is not recommended for women of child bearing age ??
Primary hypothyroidism caused by RAI is known to be more difficult to treat ?
RAI is known to trash vitamins and minerals ?
RAI is known to be taken up - to a lesser extent - by other glands and organs in the body ?
RAI is know to cause cancer of small bowel and breast ?
All above found in Elaine Moore books and website - elaine-moore.com
Please do your research - just pop RAI into your search engine and see what comes back :
RAI is not for your health and well being - but a fast, quick cheap treatment option -
with a discharge back out to your primary care doctor who isn't even able to run the appropriate blood tests let along offer you any treatment options other than the cheapest treatment option T4 - Levothyroxine.
Please read again the research papers I've already sent you - copy these research papers for your medical team and ask them for their considered opinion in light of this new research ?
If given a RAI leaflet from the British Thyroid Foundation throw it away and do you own research and ask your medical team to explain the research that states the AT drugs are perfectly safe to take- long term and why do they still offer RAI treatment - considering the known side effects.
if push comes to shove have a thyroidectomy -
but living without a thyroid is not a quick fix and not resolved by taking just 1 ' safe ' tablet every day for the rest of your life as is promoted by the NHS .
Thanks again for your response pennyannie, I’m mid 40s with 3 children and zero plans for anymore.
OK - but surely you still need to ask yourself why - if RAI is so safe ????
I've never had overactive or RAI but my mother in law did have them years ago and deeply regrets having the RAI. She was pushed into it and no other choices were offered. And once she'd had it she was dropped like a brick by the Endo and no follow ups were carried out.
It seems RAI mainly benefits the NHS, not hyper patients. Please think very carefully and dont be rushed into a decision. Its irreversible.
Thanks for your response, yes I definitely will do. I’m just trying to weigh up if I could feel even worse than I do now? Or will it actually work for me? It’s so difficult to make the decision.
Have you been offered other options and they do exist, like thyroidectomy, or block and replace? The reason RAI is pushed is its quick, cheap and gets you off the NHS Endo list.
Once you've had it, should you require replacement hormones you'll be left in the " care" of your GP and as you've probably seen from other members GP's can be shockingly bad at managing hypothyroid.
I think if I were in your shoes I would be exploring all your options and not be pushed into making any hasty decisions. Any decision you do make has to be in your best interests, not the NHS's.
Hi, I’ve been offered a thyroidectomy, not a block and replace? I haven’t heard of this, so will look into it. Thank you.
Block and replace is where you take an anti thyroid drug like Carb or PTU which lowers or blocks your own thyroid output and then are given Levo to get your levels back into range. Its obviously a balancing act and getting the ratio right can take time but it works and is obviously reversible.
As I said I have no personal experience of Hyper and we have many more knowledgeable members who've been through it, but its another option.
Thank you for this. This sounds interesting and possibly something I would prefer- for now anyway - as obviously it is reversible. I had never heard of it before, I thought my only options were RAI or surgery.
I requested block and replace from my endo who was also a professor/teacher but was refused. His argument was the amount of drugs taken , both of which have side effects. He did "humour" me for 5 years to stay on carbimazole, but ultimately I had to have RAI due to a couple of severe relapses. Still not all that great 5 years on from that but better than I was when I had Graves. A nurse friend did suggest a thyroidectomy but I was too scared of the risks from that as well. Over 60 and overweight, anaesthetic, surgical complications etc. Difficult decision to make. I did try to get a RAI dose based on my weight so I had a partial thyroid left but that didn't happen either, I was given a full dose.
Yes - the dose of RAI does seem to be not as exacting as one might think and yes, it's very much like being between a rock and a hard place -
drink a toxic substance or have your throat slit open -
thank goodness we do now have some research on this whole area of confusion -
and if well and happy on the AT drug it should be prescribed - for as long as it takes - after all we are looking at an auto immune disease for which there is no cure.
The issue further compounded by the NHS withdrawal of 2 of the 3 known to be successful treatment options for hypothyroidism - leaving your doctor with just anti depressants to placate the patient if the cheapest option T4 does not totally resolve symptoms. encouraging patients to believe it's something else and all in their heads.
I didn’t realise anti depressants were used with hypo patients, I went on them after my last pregnancy and really couldn’t go on them again.
I have decided to postpone my RAI for at least a year, to give myself the time & space to research.
It may not come across, but I’m actually into holistic therapies etc and not just taking the first thing I’m usually told. I would never usually so blindly agree to something without the full research. I’m so happy to have found this forum as I was about to kind of sleep walk into an irreversible situation that might really affect my mental health as well as everything else. I think because I’ve been bombarded with two things in a short space of time, it’s been quite overwhelming, I’m just exhausted by it all and I’ve not really had time to fully process everything yet. I have just spoken to my husband about it and he agrees that it would be best to wait, research lots and then make an informed decision so in the future I fully know what I am doing.
It's not that anti depressants are used to treat hypothyroidism -
It's just that 2 of the 3 recognised, acknowledged treatment options for hypothyroidism have been withdrawn from being initiated and prescribed in primary care.
So if T4 - Levothyroxine which is the cheapest and only treatment option readily prescribed does not resolve your symptoms of hypothyroidism - the doctor only has anti depressants to close you down with -
and will need to refer you back to an endocrinologist to assess your need for anything other than T4 -
and in certain areas of the country ICB health authorities are implementing financial constraints resulting in medical need being over shadowed by financial restraint.
Obviously if you can afford to go Private and know who to see ( so you don't waste your money and time ) there is a very different landscape.
Ok, thanks, that makes sense. I do have private healthcare - but I got it straight after being diagnosed and so have to wait for exactly 2 years until I can do anything (which will be in September) as my healthcare won’t deal with anything which is classed as new before that date and I can only use it for pre-existing things until that point.
Hi, thanks for your response, yes I was thinking I wanted a lower RAI dose so to keep part of my thyroid, but my consultant said it’s a fixed amount for everyone.
I am going to kick the can down the road so to speak and postpone my RAI and ask about block & replace, but after your experience, they will probably reject it like your consultant.
Like you I am also overweight. I previously lost all of my baby weight 4 years ago and was 9 stone, now since my diagnosis & the weight gain (which also possibly could be due to RA medication too) I’m now 12 stone & I am unhappy with this weight gain. From everything I have read, it’s likely you can gain more weight after RAI even if intermittent fasting & exercise too as it affects your metabolism, and it can take a year or so to settle. Was this the case for you? Extra weight gain on what I already have troubles me, as weight gain exacerbates my RA too. I have decided there is just no way I can have RAI until I can get to at least 8 stone (I’m only 5’3) therefore if i put 2 stone on I’ll still be at an average weight for my height.
It’s probably not the best reasoning to postpone, but for me - it’s gives me a bit of breathing space & time to really research & make an informed decision as a lot of my time has been researching RA instead of my thyroid.
I did lose over 20kg (about 45 lbs) in the past two years but have put about 5kg (11 lbs) back on , more laziness and lack of discipline than anything else. I have had my levo dose upped recently so when I next check my levels I will try and lose a bit more weight.
That sounds positive in a way, that although you gained 11lb it was only a small part of your overall 45lb loss.
That is what I am thinking will happen with me too. Plus it is so hard to stay on track and motivated all the time.
Totally agree with your comments. RAI does benefit NHS, it means you are discharged from hospital in mt case to an incompetent GP who hasnt a clue and doesnt recognise testing T3 and T4 are important. Plus RAI trashs vit and minerals and then the GP or endo dont recognise this and tell you, you have ME!!!!
Thanks for this, to be fair to my gp, she is the one who picked up on it through my bloods when referring me for RA and contacted the Endocrine department, but yes I wouldn’t want to be discharged back unless I was feeling like everything was being controlled.
Yes it was my GP that picked it up too, care very good until I had RAI then they dont care. Good luck with refusing to be discharged from hospital, I felt ignored as endo said T3 and T4 were fine, they didnt think or care to check for vit and minerals, I would think this is basic stuff and should be followed up. I wished I hadnt agreed to RAI. I accept in some cases its the best thing to do and if you are one of the lucky ones thats brilliant and with some there's not much choice but I would say do your homework before you agree to it as once its done there's no going back. I wish you all the very best just dont jump before you have weighed it all up. All the best
Thank you.
I had RAI and it was the best thing for me, ended many years of Graves ups and downs.
Thanks for your response.
That’s what I am hoping, I’ve been ill on and off for years not knowing why and it’s only because I had detailed bloods for RA it was picked up. I’m hopeful this could be the best thing for me too, but it could go either way. I honestly just don’t know.
BEFORE considering an irrevocable step, get FULL thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once for autoimmune hypothyroid disease (hashimoto’s) which frequently starts with transient hyperthyroid results and symptoms
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - Graves or Hashimoto’s
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
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 all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Graves Disease antibodies test
medichecks.com/products/tsh...
Thanks for your response.
That’s really good, thanks for all of these links - I will double check to see if I have had the full thyroid and vitamin testing- I think I might have had vitamin D testing from my RA consultant but I think I need to get some more detailed tests done if I can’t find everything I need.
Hello there, I have Graves and had a thyroidectomy in 2022.It was the best option for me after lots of ups and downs like you.However, I found this site in 2018 after I had just been diagnosed and tried everything else first,carbimazole etc.I learnt alot from here about my condition,and how everything works.I did private blood testing to check my levels and I had in writing the blood test for positive graves antibodies (which had been done by an NHS endo).
What I am trying to say is that yes,RAI might be the right choice for you,but it irreversible.Just take a step back,ring your endo's secretary and get printed copies of your bloods,get copies of any GP bloods or if you have online access look on there.Maybe get some private bloods done and post on here.Just to make sure everything is as they say it is before going ahead.
As I said,it may be the right thing for you,thyroidectomy was for me.You just want to make sure in your head that you are confident you have checked everything thoroughly and tried all other options,then there will be no regrets.Wishing you all the best.
Hello, thanks for your response, I had considered a thyroidectomy, but I felt that was more irreversible compared to RAI? My consultant said that sometimes happens?
Maybe I’m being naive, my hope is just to get back to normal, not under - just back to my normal levels. Maybe I have always had it but undiagnosed as I have always been a lethargic person and previously they thought it was chronic fatigue syndrome, then sleep apnea which they couldn’t explain- it’s only because I had symptoms of RA 2 years ago that I had further tests & that’s when it was picked up. It’s all a bit of a whirlwind really as I’m trying to navigate meditation for RA & the side effects from that whilst also taking thyroid medication & the side effects from this as they were diagnosed so close together. It seems to have came on suddenly & I just want it to go as suddenly as it came, but as I say, I’m probably being naive and I might always have had this, but it’s never been picked up before. I don’t know.
Also I have posted my bloods now 🙂.
Hello again, I can understand being overwhelmed with everything, especially if you are also trying to manage medication for another condition, and possible side effects.I chose thyroidectomy because I also have thyroid eye disease and RAI can make that worse. But I would consider both irreversible as RAI destroys the thyroid too and just for me,I thought surgery would be a quicker,cleaner option.
Hi, also can I check, with full thyroid testing would that include TRAb, or is it a separate stand alone test?
From reading I believe that would be a definitive test in knowing if I actually have graves or not, as at the moment I have been told I have this after being told initially I don’t and my hyper was due to toxic nodules.
I do not have any TRAb results, so I am wondering if that is usually done, but not always put in a letter, or if it has ever been done.
I believe this would help with my decision making as I would know if long term medication might actually help instead as although I’ve been on carbimazole & PTU over the last couple of years, I haven’t been on either for 18 months straight - I’ve been on & off my thyroid medication a week here & there, due to other RA medications & their severe side effects.
You are legally entitled to copies of all your tests
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Medichecks offer Trab antibodies testing
Has to be private blood draw
Graves Disease antibodies test
medichecks.com/products/tsh...
Thanks for this. I have to go into hospital for all of my consultant blood tests as my GP only does the blood tests they send for at my GP surgery. Should the hospital ones also be added to my account, as I do have an online account, but I can only ever see my GP requested test results on there?
Email hospital for copies of all your test results and ranges
You have done the right thing by asking questions first, if only I hadn’t thought the Endo I was seeing had MY best interests at heart when he pushed me into RAI treatment. I kick myself on a daily basis for being so stupid. I deeply regret not doing my own research before agreeing to this disgusting treatment. The NHS pushes this treatment because it’s the easiest and cheapest option for THEM. Think twice and, if you need definitive treatment, much better to go for thyroidectomy.
Thanks for your response, would you say you feel worse since having RAI in comparison to how you were feeling before? Also is it a general feeling or specific to certain parts of your body
Also did you gain weight after having RAI? This is something I do not want to happen, as I have already gained weight since my diagnosis and starting medication.
just adding to the good advice to wait and research RAI. Like pennyannie, I regret hugely being rushed into it. Also I found I have lung scarring, which apparently can happen . They didn’t tell me that before and I doubt are saying it now.
Thanks for your response. I did not know that this could happen. I do have regular lung scans as I am on a biologic medication for RA so this is something I shall look into more. Thank you.
Morning all, and thank you all for your responses.
I have gone through my most recent letters and have found the ranges -
So T3 is 8 with a range 2.4 - 6.0
T4 is 16 with a range 9.0 - 19.0
TSH is <0.01 with a range 0.4 - 4.9
Total vitamin D is 102 with a range >49.9
Abbott Thyroid Abs is 1 with a range 0-6
Anti-thyroid peroxidase antibodies is negative
Were you on medication at the time of these tests? If yes, what was it?
You mention that things went haywire with your health soon after you started being treated for RA. Have I got that right?
You should always make sure that you are familiar with the Patient Information Leaflets for any drugs you take, and read up about the known side effects and risks. Some supplements can also cause side effects too.
There is also the possibility that your drugs could interfere with each other, so it is worth looking for interactions between them. This is an interactions checker that is useful and thorough, as far as I can tell.
drugs.com/drug_interactions...
You have to create a list of the drugs (and supplements if you want to) you take and then check for interactions. The list can be saved so you can repeat the interactions check at a later date.
...
I don't know where you live. Drugs.com is a USA website and it is worth searching it for information on anything you take. I'm from the UK and have found that, obviously, a lot of the info on drugs.com is similar to the information on UK Patient Information Leaflets and websites, but it isn't exactly the same. I have found out info that helped me with understanding my own symptoms when taking certain prescribed drugs.
I was on PTU at the time of my recent blood tests. Plus biologics for RA and blood pressure medication.
No. I was diagnosed with RA in the late August by a consultant and Overactive Thyroid by a consultant in September of the same year. I was referred to both departments by my GP as she ran loads of blood tests as my toes were hurting while walking in sandals- I actually thought I’d somehow broken my toe, but from my bloods she noticed raised inflammation & thyroid levels. I hadn’t actually started any RA treatment at the time of my Thyroid diagnosis, they offered me steroids at the time in the August but I refused them. Then they put me on a waiting list to see a specialist nurse about medication, but I didn’t start it until around the Oct.
Yes, I have checked & double checked if there is any interaction and from everything I have read & been told, by both consultants there isn’t.
I am also in the UK.
I think the issue is drs see hyper and the cause isn’t relevant to them. They want to treat it and move it along.
Graves can go into remission, but they limit this to 18 months or so and figure ifs it not in remission by now let’s definitively treat.
I had negative graves & autoimmune antibodies so the specialist completed an uptake scan which confirmed toxic nodules. These are expected to remain so I was offered RAI early on, which I delayed… indefinitely.
Your FT4 is in range but your FT3 is high. That is not unusual with nodules.
How much PTU do you take? Could you increase dose slightly, to lower FT3?
Hi PurpleNails,
Yes I have had two uptake scans which confirmed toxic nodules. I was offered RAI last year and put it back as I wasn’t sure, but they said PTU isn’t good to be on long term. I came off carbimazole as I was gaining weight on it.
I’m only on 50mg a day of PTU but when I went to see the consultant last month he decided to increase it to 100mg.
Yes the dr said it’s better to be under than over, but said many patients don’t go under and their readings level out and they can come off all medication, although obviously he can’t guarantee this.
I think the dr is fobbing you off & seriously glossing over the situation.
Drs prefer not to monitor / manage hyper long term. This risk of side affect from medication are very low. They are the same when you begin they don’t increase.
Being on too much carbimazole can lead to gaining weight. We are also warned we have become accustomed to larger appetites when hyper.
50mg a day of PTU is equivalent to 5mg carbimazole. How frequently are you retested? It should be 6 weekly.
Most do become hypothyroid after RAI. Two thirds do within first few months, other become hyperthyroid year after. That hypothyroid at a treatable level. It may also be people left with a struggling thyroid for years.
Sometimes the first treatment doesn’t work fast enough, 10% have RAI repeated.
Doctors view under active as easier to treat in primary care, so it’s better for your doctor who can discharge you, but some can struggle & hypothyroid can often be poorly managed.
I have blood tests done around every 5-6 weeks. I have been told by two consultants that hyper is worse than hypo in the long term? I was only on 5mg of carbimazole when I stopped.
I initially started at 10, but felt ill with it, so they reduced it which was ok as I felt better with the lower dose but still gaining weight. I only went on PTU due to weight gain.
I think hyper is viewed as more serious in the short term as someone can go very overactive and develop something called a thyroid storm, which needs urgent treatment.
That said hypo isnt a cake walk either and doctors think its easily managed, just take a little pill each day. Long term untreated hypo or poorly managed hypo also comes with health risks, cardiovascular damage, high cholesterol, being two. Plus poor quality of life. We have members who have been diagnosed with depression or chronic fatigue who found out it was poorly treated hypo to blame.
If I was considering RAI I would want written assurances that should I become hypo and need thyroid replacement, all treatment options, including T3 would be available.
Thank you.
I have decided I am definitely going to postpone for now. I need to make a fully informed decision.
I really appreciate your responses as it’s made me wake up so to speak & do my full research before agreeing to it in the future.
I am going to write a list of everything I would be concerned about such as weight gain, after treatment options for medication etc & say in the future I might have this done, but on the proviso I do have these written assurances.
I have only recently discovered this forum, even though I had my diagnosis two years ago. There is so much I don’t know and am learning about through this.
I think as I had two different diagnoses within a month of each other I focused on one - RA as it’s more immediate, the pain is constant, I didn’t really have the headspace to think about my Thyroid too. Now some time has passed & maybe having the RAI booked was the catalyst I needed, to actually think about what I am doing, or about to do to my body.
I’m so glad of everyone’s input to help me with my decision making.
You are most welcome 😄 and I hope you make the decision that is best for you. Most of us joined the forum knowing very little about thyroid and I'm not going to sugar coat it, thyroid conditions are very seldom competently treated by doctors. Its pretty scary actually but I've found other members here know far more about thyroid than doctors do.
This is by far the busiest forum on HU and our admins are kept very busy answering questions. We've all been there. I've been a member since 2021 and looking back I cant believe how naive and uninformed I was when I joined.
But we all have to start somewhere and its great that you are researching, asking questions and weighing up your options. Please keep coming back and finding out as much about your condition as you can and keep us updated on your progress.
And most importantly take as much time as you need to decide on your next steps. You dont dance to the NHS's tune.
Thank you. Yes this forum is so informative and honestly it helps so much to find out experiences from others who have been through similar.
Yes I definitely will do ☺️.
Plus you’re completely right. I feel so much better already now I’ve decided to not go ahead and actually think about it all first.
I do sympathise about the RA, my mum had it bless her and it was horrible for her. I have Ehlers Danlos and Fibro so I definitely know where you are coming from regarding pain. Hope you find something that helps.
Thank you.
Yes RA is awful as it came on so suddenly too. I’m sorry to hear you have Fibro and Ehlers Danlos. I hope your pain management is controlled.
Well its not really. I'm extremely sensitive to meds and have tried and failed with all of the ones the NHS will prescribe. But I source low dose Naltrexone privately and that helps me a bit.
I’m sorry to hear this.
The RAI dosage has been the subject of many, many papers. It sometimes looks like everywhere that does RAI has their own view. Ranging from a fixed dose for everyone. To a dose based on multiple factors.
Over nine thousand papers found (albeit quite a number are irrelevant):
as you have RA and thyroid issues are you on strictly gluten free diet and/or dairy free diet
Get coeliac blood test done BEFORE cutting gluten out
6-12 months after trialing gluten free it’s definitely worth trying dairy free as well
No. I’m not. I just try to eat anti inflammatory foods. It will be something I will need to look into though. Thank you.
UPDATE - I have contacted my consultant’s secretary to cancel my upcoming RAI appointment.
I have explained my feelings and that I want to research and get the full facts in order to make an informed decision before committing to something irreversible.
I feel so much better now I’ve told them.
I might have RAI in the future, I honestly don’t know at this time, but definitely not yet, not until I am informed and ready.
Thank you to everyone that has commented, I really appreciate it and it has truly helped me with my decision making process.
I am so glad I found this forum & I wish you all well 😊.
I feel so much better now I’ve told them.
That was good to read.
Whatever your eventual decision, it is much better to have arrived at it yourself and not feel pushed into it by "them". (Even if they do genuinely think what they arranged was the best for you.)
Thank you.
Please help me interpret these results!
can anybody help with these results? Thank you!
Can anyone help me with these blood results please
Can anyone help me with these results ??
Can anyone help me with hair loss? 
