To give a brief history - I was diagnosed with Graves’ Disease in 2000. After 6 years on Propananol, Levothyroxine and Carbimazole, I had Radio Active Iodine in 2006 and have been on varying doses of Levothyroxine ever since.
During my routine yearly blood test at the end of 2019 it was detected that I was anaemic. Upon further tests, I was told my haemoglobin levels were normal but my Mean Cell Volume (size of the red cells) were small and I had very low ferritin levels. I had numerous blood tests that led to no findings and at the start of this year I had a gastroscopy and endoscopy, again with normal results. I was just given a months supply of synthetic iron and sent on my way with absolutely no further follow up or indication of why my blood levels would be presenting this way.
Every single day I feel fatigued and weak. I struggle to concentrate and fall/stay asleep. I’ve had random episodes of chest tightening and palpitations but an echo stress cardiogram showed a perfectly healthy heart. I also have excessively dry skin. I am now at a complete loss what to do and how to ever feel like me again. I have two young children and I want to be full of life again but I just feel palmed off by the NHS, because they can’t find a reason for my blood results and symptoms I’ve just been left to carry on as I was??
I’ve researched online long term side effects of RAI and Levothyroxine use but it’s so hard to find information relating to this. But fortunately, I’ve stumbled across the forum and have seen lots of other accounts of people experiencing similar things. So my questions are:
• does anyone have any info or can direct me to find my own research relating to RAI/Levothyroxine and blood disorders?
• how do I go about switching Levothyroxine to NDT? I’ve seen lots of people say their GP won’t prescribe. Would I be able to transition myself? If so, how does dosage work and where is the best place to obtain it? I’m currently on 175mcg Levo daily.
• I’m going to request another blood test to get my most recent levels - is there anything specific I should ask to be checked? B12 etc?
Many thanks in advance,
Rachel.
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RachFow85
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Sorry you are having a difficult time and lack of help from NHS.
I’ve not had RAI, although my endocrinologist tells me this is the treatment expected for me…
I know exactly how you feel when you wrote you feel palmed off by the NHS, because they can’t find a reason for my blood results and symptoms.
They seem to do a minimum of tests and if it not easily explainable they just give up, usually without advising. That’s what they did with me. Except the time they just kept reappearing the same test, saying they couldn’t explain them so kept suggesting they be repeated. I gave up after the third time.
I’m sure more members who know more about anemia will comment and those that have experienced RAI.
I think it might help if you share any results you have had. Usually for full thyroid function you need the following:
TSH
FT4
FT3
TPO
TGab
TSI or TRab if Graves suspected presumably these were done when diagnosed.
B12
FERRITIN
FOLATE
VITAMIN D
What was your full blood count results and have you had a iron panel?
Ensue you include ranges for each result (ranges vary between labs).
Thank you so much for your reply. Yes, it’s soul destroying with my GP, as lovely as she is, it seems if you don’t fit the boxes and they have no explanation you’re just presumed an anomaly and sent on your way. At least that’s my experience. I was prescribed a months supply of iron in March (of which I haven’t taken!) and that’s the last contact I’ve had. No follow up bloods, no check up, no nothing 🤷🏽♀️ Like you, I’ve just lost faith and given up with them now. But equally, I so desperately don’t want to feel like this anymore.
I will call the surgery tomorrow and get all the blood results and then update you.
Thanks so much again. I really hope you get the answers you need too! X
I find I need to press for follow up, & check my own results and even check what’s being tested. I once trusted it when I was told everything normal no further action. Turns out results wasn’t event sent from hospital, (I tracked them down lasted year) admin were looking at wrong set of results. I wasn’t diagnosed until 4 years later. Fortunately the Ft3 had only risen from elevated to double the range over that time so it could had been much worse.
I have now arranged online access to view all my blood tests results without involving practice staff. NHS England are contractually obliged to make records available online, other areas vary. It can take a few weeks at least to set up, as you have to request full access within the setting of the user system. Start by asking for a log in for online services, they initially grant a basic access only.
Prior to setting up I would obtain printout via reception (don’t ask doctor, they don’t like you to know!)
Don’t accept verbal or hand scribbled notes as you need a printed copy with those ranges. They shouldn’t ask why but if they are obstructive in any way just say they are for your records. You are legally entitled to your records.
Thank you again for all of this information, it’s so helpful.
Yes I’m with you in constantly having to chase them up and suggest the next step. I’ve tried to call them twice today to set up the online system and have been in a queue of 12 and 16 people, the system is useless! I’ll press on though!!
I am sorry you are going through all this and finding little resolve to your symptoms :
i was diagnosed Graves in 2004 and given RAI treatment the following year and I knew nothing and simply went along with what I was told. i was well on the Carbimazole but told it was too dangerous a medication to stay on long term and that I would be much better after the treatment but, may, become hypothyroid and that was very successfully treated with a safe different little tablet and not need hospital follow ups and managed by my doctor.
I became very unwell around 8 years later - and it started with my nasal passages becoming very dry, followed by my ears, and then my eyes would be burning : I was prescribed various eye ointments and once referred to a consultant who thought my tear ducts were blocked :
My saliva was also drying up on me, and my dentist suggested I should be referred to test for Sjogrens Syndrome and actually forced the issue with my doctor as I felt i wasn't being listened to by this time and I'm not good at keep complaining :
I joined the Sjogren Society as my symptoms matched and I waited to find help at the hospital. I was referred to rheumatology and had a multitude of blood tests and only a low ferritin was found. The surgeon who did my lip biopsy told at the time she didn't think this was Sjogrens though she had never seen anything like the inside of my mouth.
True to form I was negetive for Sjogrens and I was then referred for a coloscopy and an endoscopy to investigate the low ferritin :
Endoscopy failed as my mouth was too dry and much too painful to swallow the scope :
I did tell them !!
Colonoscopy completed, with me fainting with the pain and waking up attached to several leads and machines, as the pain in my mouth was also in my bottom - but there was a man with a scope who was determined to finish what he had started as I writhed in agony, twisting this way and tha, to accommodate the scope, attached to machines on both arms.
Clear for cancer !!
I had had both an endoscopy and a colonoscopy years earlier, at the very same hospital before RAI without any upsets and without any sedation ???
So anyway, all the above took around 2 years of appointments - and I was referred to as a conundrum and prescribed iron tablets.
So, housebound, I thought, maybe that Graves I had around 10 years ago had come back :
I purchased Elaine Moore's first book Graves Disease - A Practical Guide and read of all my current symptoms being consequences of drinking RAI :
Being dyslexic I purchased a second copy of the book for my doctor as I thought she would be interested and see I wasn't making anything up - but she declined - a rift set in - and then I found myself looking at low ferritin and somehow ended up on here :
Thank goodness for this amazing forum :
Anyway, so sorry for that long ramble :
First and foremost we need to see a full thyroid blood panel to include TSH, T3, T4, antibodies, inflammation, plus ferritin, folate, B12 and vitamin D :
If your doctor is unable to run this for you there are private companies on the Thyroid uk website, who will, and you then simply need to start a new post and throw up the results and ranges for forum members to comment on - this is where we all start to turn things around for ourselves where we can.
Thyroid uk are the charity wo support this amazing forum and you will find further information on all things thyroid on their website.
Generally speaking in primary care the yearly thyroid blood test on which we are all dosed and " managed " is just a TSH blood test which is not appropriate especially when with an thyroid AI disease or after the medical invention of a thyroidectomy or RAI thyroid ablation when your feedback loop is broken and the TSH in my opinion meaningless.
Elaine Moore now has a website and several published books - she too went through RAI for Graves and finding no help with her continued symptoms started researching this poorly understood and badly treated AI disease herself.
I too found no help with the NHS system, and refused both Natural Desiccated Thyroid and a trial of T3 - Liothyronine in 2018.
By this time I'd read and learnt so much I felt I had nothing to loose but to help myself, as no one else was, so I purchased the other thyroid hormone replacements that are widely available in other countries throughout the World and started my own trials.
A little T3 with my T4 worked - and my brain was calm. but engaged, a light bulb moment :
I then trialled the NDT and have been on this option now for 3 years as it feels softer on my body and more " well rounded and complete " - if that makes any sense ;
Your Thyroid and How To Keep It Healthy - is a relatively easy read, and written by a doctor who has hypothyroidism - Barry Durrant-Peatfield.
Graves is an autoimmune disease and as such is for life : however after RAI your symptoms aren't life threatening but possibly life limiting :
Barbara S Lougheed was another read - From Hyper to Hypo to Healing - again another lady who went through RAI for Graves.
So, I've gone on too much - sorry - just get the full thyroid blood panel as that is your first step forward to better health :
Hi penny Annie. What finally got rid of the sinus, ear and eye problem. I have the same issues and cannot get rid of them. I also have morning anxiety and extreme fatigue. Dizziness and nausea. 120 NDT seems too much (I get extremely sore scapula and shakiness). 112.5 doesn’t seem enough.
The official diagnosis was " sicca syndrome " as I was negetive for Sjogrens after a lip biopsy :
I believe all my symptoms were caused by the consequence of ingesting Radio Active Iodine which is made from nuclear toxic waste.
My whole digestive track from my mouth to my bottom feeling as though it was burnt out and so very very dry - for want of a better word - and I was in extreme pain for around 18 months until my saliva started to come bck on stream and then had to face multiple teeth extractions.
My ears and nose were a minor inconvenience - my eyes resolved by using preservative free lotions, potions, gels and drops, which I still need at times.
I switched to a T3/T4 combo and then switched to NDT about 3 years ago and am ok but still a little hypo but get " hyper" for me, symptoms if I try and increase :
No thyroid hormone works well until your core strength is strong and solid : and ferritin, folate, B12 and vitamin D all optimal all of the time :
Maybe the 1/4 ratio of T3 /T4 in NDT doesn't suit you ;
Maybe you need to split your dose - I don't know and as this this somebody else's post I'll stop now and look at your profile and see if I have any ideas just for you:
I am in the U.S also had graves and RAI in 2000. Found a new dr and he looked at me and said you have thyroid issues, I can tell by your moon shaped face. He added T3 to my levothyroxine I was very allergic. He then put me on NDT and I take 240 mg a day. We adjusted the amounts until I felt better. I am actually a little above on T3 and high range T4 . This is where I feel best. I have now lost weight, AIC has dropped and need less blood pressure meds.. TSH almost non existent. He lets me decide if I want to lower or increase my dosage. It’s all about how you feel.
Thank you so much for such an in-depth explanation of your journey. I am so sorry that you have had to go through this too. But it gives me great hope that you are on the other side and have found a treatment that works for you.
I can completely relate to the NHS battle and how they are clueless about anything thyroid related other than dishing out levothyroxine and running routine tests. I was 10 when I was first diagnosed with Graves’ so a lot of it, I don’t fully remember. My mum had made virtually all of the decisions in my treatment plan with the consultants at the time and she’d basically been told that I couldn’t stay on the block and replace plan because my body was rejecting the carbimazole and I was relapsing into hyperthyroidism at alarming rates every time they tried to test my body without medication. My two options were surgery or RAI, but mum was pretty much told surgery wasn’t really an option because it was so close to my voice box and there was a high risk I might never speak again!!!!! They’d basically terrified her into RAI being the only option for me otherwise I’d likely die. Truly awful!!!! Also like you, we were sold the “it’s just a drink and then a few tablets a day for the rest of her life” fairytale too. “Perfectly safe”!!!
I’ve decided I’m going to go private for my bloods and will arrange this tonight. Is medichecks the preferred company? I feel so deflated with the NHS and I know I’ll be waiting weeks for the GP to do anything, and then arranging a blood test at the hospital and so on. The fact that they’ve just left me to get on with it, and not even once considered my current situation could be related to long term levothyroxine or side effects from RAI speaks volumes!!! I’d rather just get the job done and then see where I can go from there. As soon as I get the results I will start a new thread and hopefully be able to make a plan moving forward.
From what I've learnt since about RAI being a " slow burn " and RAI induced primary hypothyroidism more difficult to treat - I think at least two hold :
I also read the dose of RAI not as accurate as one might think ?
I also read it's essential to be dosed and monitored on T3 and T4 blood test results which I do know didn't happen in primary care :
I was never " hyper " in the true sense of the word as discussed widely on here and believe i have been hypo most of my life so presume my TR ab receptor blocking antibodies were in residence for many years, holding down my TSH so i was never picked up as hypothyroid on a TSH blood test.
What concerns me is that no medical mainstream person wants to answer the question of " Why me " and what's gone wrong and can we fix it.
So anyway, onwards and upwards - there is no preferred private blood test company just go with whichever makes sense for you : I use Medichecks as Blue Horizon, when I first enquired didn't have any " home visit of a nurse to draw blood " facility in Cornwall.
I'm so sorry to read of your Mum's situation - she must have been so concerned for you and continually worried by the frightening scenario painted by the medical mainstream :
It is very much like being between a rock and a hard place, to either have your throat slit open or to drink a poison - absolutely galling when you read of other people staying on the AT drugs for years and even being giving options - I think my age at 56 saw me earmarked for Nuclear Medicine in the bowels of the basement where I met a Major Tom dressed in a space suit who pushed a yellow and black hazard taped tin can towards me with a metal grabber and instructed me to drink it down in one go :
Take good care - you can come back from this and you will, one step at a time :
It seems most people diagnosed with Graves are allocated a 15-18 month window on AT drugs and managed in O/P by an endocrinologist :
Many patients are encouraged, even from the outset on AT drugs to consider having RAI if the drugs fail :
Of course the drugs may well fail through inexperience of the endocrinologist - as lets face it, once on the medication you are very much dependant on the endo knowing what they are doing and you are very much " in their hands " and put in a holding pattern, much like a plane on automatic pilot until it's time to land.
When does the endo suggest trying for " remission " and are the Graves antibodies rechecked and found low and back in range ?
Is it when the patient is sufficiently hypothyroid ?
Is it when the pressure on hospital O/P waiting times puts pressure on the system staff and services ?
In my experience I saw a different endo most times I went - and when I questioned one chap the explanation was that he was " just on rotation ' ??
There was no continuity of care as no one was there long enough to see a successful outcome.
I read recently of another research paper from a cohort study in Korea stating that the longer the AT drug is used the lower the relapse in Graves' disease.
Though current literature suggests 12-18 months of AT drugs treatment for patients with Graves' disease, BUT the risk of relapse is high.
So the patient feels a failure and more unwell accepts the more drastic option of RAI thyroid ablation and assured that they will then be " better " - and as they are now punch drunk and sadly, probably not told any of the consequences of this toxic substance because why would anybody in their right mind agree to poisoning themselves:
This was just my experience, but have read of many similar situations on here over the years.
I'm sorry if it comes across as cynical - but I really do think RAI should not be in a medical conversation when we are looking at an auto immune disease that just happens to attack the thyroid when the immune system is active.
I read that RAI is still the first treatment offered for Graves patients when the AT drugs are deemed not to have worked for them :
I read that very many people are well and with no side effects from taking RAI :
Maybe I'm just " fall out " and a small % of the population who are more ill after RAI treatment than before - I don't know because I can't get any answers from any medical body and the information is very limited.
Hi, Sorry to hear about all these feeling. I was the same as you when the could not find anything. When I was on 75 microgram then 100 microgram levethyroxin. In the evening , I felt tight and hot chest. I felt if I open my ribs , the heat and pressure go away. Feeling horrible. But they kept telling me I am on menopose. Till I requested blood test. My blood test confirm that I am not on menopose even it is not premonopose, it was hight does of my tablet. Unfortunately, GPS have presume everything. Go to see consultant as I did. I was refused by NHS. But I went to see privately. At least they can pick everything in the first visit. I hope you f get a right help soon
I’m so sorry to hear you’ve had the same battles too. I hope you have a clear pathway ahead now?To be honest I’ve lost all faith in the NHS with sorting this - or even wanting to attempt to try and help. They just seem so set on handing out another prescription for X, Y and Z, rather than just explore the route cause. Like they have a little checklist that they can’t deviate from and if you don’t meet the criteria at the end of their pre-planned investigations you’re dismissed. It’s so frustrating!!!
I've been down a similar road to you but gave up with my GP when I realised the NHS didn't want to make me well as much as it did make me feel a bit better and not die.
When the results of my NHS blood tests did not improve after a diagnosis of Graves Disease and everyone seemed to lose interest I decided to "go independent".
With the help of this forum I found Medichecks and arranged my own blood test (the UltraVit). Over the next three blood tests and eighteen months the kind people here helped me optimise my results until only the T3 reading was anomalous.
Like you I started looking for NDT to address this. I failed completely. I have not found a way round obtaining NDT without a prescription - possibly because of the dosage question, possibly because modern GPs are taught to dismiss it in favour of the synthetic, pure, Levothyroxine. My GP was openly contemptuous of my query when I asked and said my T3 was "within range" and "fine"
Again, with the help of this forum, I found an Endocrinologist who has in the past prescribed both T3 and NDT for others. Armed with all the information now in my possession I arranged a private consultation and asked blatantly for NDT first and, failing that, T3.
He did not refuse but suggested we try to address first the cause of the autoimmune disease that led to the Graves in the first place. That we are now doing and I shall keep on until I get the situation resolved.
I'm afraid the NHS at all levels is in a mess with treating thyroid and I've been shocked at the ignorance amongst GP's about treating thyroid conditions.
The point of this (long) story is my advice is to press on until you get the help you need. If you are lucky this will be through the NHS but you may need too find other routes.
Thank you so much for your response. It’s so sad that so many of us have been let down by those who we put faith in to keep us well and resolve our medical issues. It has become so apparent for me, and I think you touched base on this too, that the pharmaceutical/mainstream medical institutes are more about managing than curing! And even then, there’s a limit as to how far they will go.
It’s music to my ears that you found an endocrinologist who was willing to explore the cause of Graves. I’ve recently undergone a homeopathic detox and interestingly she wondered if my diagnosis stemmed from an adverse reaction to the MMR vaccine when I was younger. I guess I’ll never really know but it’s so true that the issue is not the thyroid, it’s doing what it needs to try and keep the body afloat, something has triggered the body to react and the thyroid workings are the symptom. I guess that’s all a bit too late for me now, but still, I find it fascinating.
Thank you for the info on the private bloods. I’m going to get some arranged now and then I can update on the results and hopefully someone will be able to shed some light for me.
I really hope you find success in your pursuit to understand the cause and how best to manage/treat for you.
First step is to get FULL thyroid and vitamin testing done
How much levothyroxine are you currently taking
Do you always get same brand at each prescription
What vitamin supplements are you currently taking
Are you still taking propranolol?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with Graves’ disease
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Strictly gluten free diet frequently helps or is essential, but get coeliac blood test done BEFORE considering cutting gluten out
Are you being treated by a GP?They don't know enough to treat Graves Disease. You need to be under the care of an endocrinologist.
I've had three episodes of Graves and each time was referred by the gp to an endocrinologist at my local hospital (Kings hospital, London.)
I was prescribed the block and replace treatment - a high dose of carbimazole for 6 months and then stop. It puts me in remission for a few years. During the period of remission I am totally normal and take no medication.
I researched thyroidectomy and RAI and decided against both.
I decided to rather do the block and replace each time I get Graves.
You too might look further into Graves Disease and the most well rounded website I found was that of Elaine Moore ;
Yes Graves is poorly understood and badly treated :
The thyroid is the victim in all this and not the cause :
The cause is your immune system and something has happened to trigger your immune system response :
Once triggered you will be more prone to further triggers :
Understand better " your triggers " may well help you : Graves is said to be stress and anxiety driven : and can triggered by a sudden shock to the system like a car accident or unexpected death of a loved one :
Looking back I was attacked around 4 months before diagnosis by a man I employed as my assistant manager and continued to work alongside him whilst going through the relevant channels with my company who, ultimately were about as much use a cholate teapot.
Had just this been explained to me I would have made a " U " rather than looking for resolve and understanding of this fellow's actions.
Sorry to hear about the attack! Yes I believe that stress can trigger what you are already genetically predisposed to.It's a pity that this is not properly understood by the medical profession and that the immune response/malfunction can't be treated instead of "treating" the thyroid, which is the victim in all of this, not the villain.
I will look at Elaine Moore's website. Thanks for info.
I’m not treated or under the care of anyone (GP nor Endocrinologist) in relation to my thyroid. I simply have a yearly blood test done and then told whether to adjust my thyroxine or carry on as I am. I was under a GP with regards to the anomalies in my blood (reduced red cell size and low ferritin) which led to numerous investigations and then being referred to a gastroenterologist for gut exploration, which I was then promptly referred back to GP care when they could find anything and now just been left to get on with it.
It’s great news that you are able to manage your Graves with the block and replace and not see dramatic changes for a few years. Sadly for me, I relapsed within 6 months every time they tried to stop the medication and pretty rapidly too. In the end my body rejected the carbimazole and my white blood cell count was depleted so I had no other choice than to have some form of thyroid removal.
Oh great! thought I had lost this reply have removed the other response I did 🙄It’s not that easy to obtain NDT anymore but if you make a request for such info (we can’t post names of suppliers on the forum it’s against the rules) people can private message you with their suggestions.
I had atropic autoimmune thyroiditis which is related to Graves’ disease but it isn’t. My thyroid was totally destroyed by the disorder. I did not get on well with Levothyroxine but have found NDT much more to my liking. First you should check you are actually optimised on Levothyroxine (TSH between 0.25 and 0.5 , free T3 and free t4 in the upper third of their range. If you only have T3 and T4 it’s still the upper third of their range too). Often Levothyroxine cannot balance the hormones to the levels and ratios a person with a fully functioning thyroid has. Free T3 is often too low for optimal health. Your symptoms smack of inadequate T3. But if your numbers are out, it would be worth trying an increase. It is such a pain to get hold of NDT best make sure you don’t just need to tweak the Levothyroxine. My sister and mother were fine on it - loved it in fact! I knew something was not right for me when I did not feel well after two years of taking it.
By far the best guide I found was this one below. It’s well worth reading just for general info/knowledge. It worked perfectly for me and I felt miles better
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RAI for Graves Disease - Website which helped me.
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Newly on levothyroxine. How long until I start to feel better?
Question about pregnancy and having children with hypothyroidism after RAI for Graves disease
Graves Disease, Endo thinks I should have RAI and I'm not convinced?
