I'm new to this website and wondered if anyone can help .I was given Radio Iodine Treatment in August for a multi nodular goitre and although my thyroid levels are back within normal limits I am feeling very ill .
Achey joints , achey bones , goosebump sensation and pain in my forehead to name a few .
My anxiety has gone through the roof , and I'm really getting fed up now as been feeling ill for over a year .
Welcome to the forum
Presumably you have/had Graves' disease before RAI ?
How much Levothyroxine are you currently taking?
Do you always get same brand of Levothyroxine?
Which brand is it?
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
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.
In reality many GP surgeries 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.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially after Graves' disease
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hi
I'm not aware I has Graves disease , consultant just said I had multiple nodes .
Currently taking no medication
Giving people RAI is not an exact science and giving people too much is common. This makes people hypothyroid.
Have you had regular blood tests since being given RAI? Doctors are very reluctant to treat people with hypothyroidism, so your blood tests could show clear cut problems and yet you may be told you are fine.
You need to get copies of all the blood test results you've had (not just thyroid) for the last year or two. Then you can see whether you've been neglected and need treatment.
Graves’ Disease is not the only hyperthyroid condition for which RAI may be advised - see this link.
RAI has a very high probability of making you hypothyroid. Were you warned of this?
Definitely obtain your blood test results. Normal is not always optimal. Who is monitoring you? Hospital? GP? How often have you been checked?
Graves is the most common reason for hyperthyroidism and nodules are very common with all thyroid diseases but they do occur without Graves. I have a solitary nodule which is toxic or hyper functioning, but I do not have Graves.
I had a TSI blood test to check for Graves antibodies and a nuclear scan. Do you know if you were tested for any antibodies? My hospital wants me to have RAI and then a repeat scan 6 weeks after treatment. Did you have anything like this?
I did have a scan and was told they were hyperfunctioning .I have had 3 blood tests since having the radio iodine treatment. The last lot the endocrinologist said my Thyroid function was down to normal limits .
I will get my blood results printed and look in more detail
Thank you
Hello Stubbzy
I had RAI back in 2005 for treatment of Graves Disease and I now have to manage lingering Graves symptoms, thyroid eye disease and hypothyroidism.
In 2003 I was with symptoms of insomnia, dry gritty eyes and exhaustion and given a blood test and advised I was with an overactive, hyper thyroid and put on anti thyroid medication culminating in RAI some 15 months later.
The idea is that the RAI slowly burns out the thyroid in situ , reducing it's ability to produce thyroid hormones, thereby reducing the symptoms of hyperthyroid, but ultimately reducing the thyroid's production probably results in rendering you hypothyroid as your own thyroid is damaged, dead, non functioning and burnt out by this toxic substance.
RAI is also taken up, to a lesser extent, by other glands and organs, within the body.
RAI is known to trigger fibromyalgia type symptoms.
RAI can trigger thyroid eye disease, commonly referred to as TED.
RAI will have " trashed " all your vitamins and minerals, compounding recovery.
Primary hypothyroidism caused by RAI is known to be more difficult to treat.
RAI is a commonly used and many hundreds of patients appear not to have any issues post this treatment option. Most of the people who are on this website will be with some thyroid health issues, and what overall percentage this represents within the community, I do not know.
What I do know is that I became very unwell some 8 years after ingesting RAI and believe my health issues are because of this treatment and the monitoring and medication I received in primary care, over twelve years.
I think in the first instance ask for copies of your blood test results.
Ideally for considered opinion you do need to have the full thyroid and vitamin spectrum, and if your doctor can't do these there are private companies, that many of us on here use, as already detailed by Slow Dragon.
Thanks to this amazing site, I've managed to get myself back on track, and you too can turn things around, but you will need to read up on all things thyroid to equip yourself with the necessary knowledge to question your treatment.
There is one book that spells it all out in an easily understood common sense way :-
Your Thyroid and How To keep It Healthy is written by a doctor, Barry Durrant - Peatfield who has himself, hypothyroidism. We may now not have this major little gland but we do need to know what it does so we can try and compensate accordingly.
I am taking vitamin d , vitamin b12 and high strength turmeric, can you recommend anything else ?
Hey there Stubbzy
No, you're not going mad -
As I understand things, from reading copious replies on this forum, doctors are not well trained in vitamins and minerals, and providing your results happen to " fall in the range somewhere " you're considered ok.
Being " in range " in medical terms does not necessarily mean that you are well and that your symptoms are not related to the original health issue.
We need to be optimally medicated and that is all about where your results sit within the ranges, and the balance between the thyroid hormones of T3 and T4.
I think in the first instance your core strength vitamins and minerals of ferritin, folate, B12 and vitamin D need to be tested along with the full thyroid blood test.
This is the best starting point and as recommended on this website and Thyroid uk.
There are further details of other supplements within the book I have suggested.
I thought maybe I should have sugar coated my first reply to you, it doesn't make for nice reading, but the reality is you are not well, and I just felt I needed to confirm and acknowledge that the health issues you describe may be a result of the RAI.
You're symptoms are within months of having had this treatment and I am concerned that there appears to be little or no support from either your doctor or endocrinologist as to your current situation.
Thank you Pennieannie
You have really helped , at times I've thought I was losing my mind !
I will start studying and being more proactive
Radio active iodine treatment
Nice guidelines post Radioactive iodine
