About 11 years ago I had RAI ( radioactive Iodine Treatment ...... I take 150 levothyroxine and I now also have Fibromyalgia for past 10 years
My question is “ do I have a working thyroid or is it dead from the RAI
Just quickly to add , I had an ultra sound on my thyroid due to a goitre and having trouble swallowing, I had some nodules so was rushed in to have the treatment ( they thought it was cancer ) I have apparently unusually high counters for cancer .
Very long story but they couldn’t find out where ,
Thank you in advance
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enchantedmum
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The intention of Radioactive Iodine Ablation (for cancer or suspected cancer) is to destroy all your thyroid tissue - so that if there are any cancerous cells, they will be killed.
However, sometimes the dose is not enough to entirely kill all thyroid tissue. And sometimes thyroid tissue can re-grow.
We cannot be sure whether you have any thyroid tissue, or not.
What were your most recent blood test results and ranges
UK testing by NHS is inadequate if you only get TSH and FT4 tested
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, 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
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
You are legally entitled to printed copies of your blood test results and ranges.
Best way to get historical results is to get online access.....can be very revealing
UK GP practices are supposed to offer 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.
I had RAI in 2005 for Graves Disease and as I understand things it slowly burns out the thyroid in situ.
I became very unwell some 8 years after this treatment, which I believe was when my thyroid finally gave up the ghost.
It is well documented that the measure of RAI can be difficult to " get right " -
It is also well documented that RAI can trigger fibromyalgia like symptoms -
It is also well documented that after RAI it is more difficult to treat the resultant hypothyroidism -
I could go on, but it doesn't make for good reading, and needless to say, I deeply regret having this treatment, but there you go, we are where we are now, and there is help to understand what's going on, and what you can do to help yourself.
It is essential that you are monitored on T4 + T3 blood tests as your feedback loop is now broken and your TSH blood test, means very little, if this is the only blood test by which you are monitored -
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T3 is said to be about 4 times more powerful than T4 -Levothyroxine. T4 - Levothyroxine is a prohormone and your body needs to convert it into T3 which is the active hormone that the body runs on.
Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 into the T3 and some people simply need both these essential hormones dosed and monitored individually to bring them into balance and to a level of well being acceptable to the patient.
As you can see from the above living without a fully functioning working thyroid and being supplied with only T4 - Levothyroxine means you have lost that little bit of T3 that your own thyroid produced. I read most people need about 50 T3 a day to function, so in reality you have been automatically down regulated by about 20% of your daily requirements and that in itself can be debilitating and can make you very unwell.
The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Your ability to convert the T4 - Levothyroxine into T3 can be compromised if your vitamins and minerals are not optimal so it is also essential to have very good levels of ferritin, folate, B12 and vitamin D as no thyroid hormones work effectively, either your own or those supplemented if you show low, but " in range " no NHS action to be taken, blood test results.
Personally speaking, I just think it makes sense to replace like with like and that when there has been a medical intervention and the thyroid either removed by surgery, or disabled by RAI ablation, both these vital hormones be on the patients prescription for if, and possibly when, realistically, they will be required for the patient to be enabled to make as full a recovery as possible from loosing such a major gland.
Do you have any blood test results to share so people more able than myself can give you considered opinion as to your current status ?
Vitamin deficiencies - magnesium, vitamin d, and B12 are most common according to the author.
Small intestine bacterial overgrowth Sibo and leaky gut.
Adrenal fatigue
Mycotoxins
Mercury toxicity
MTHFR mutations so you are less able to detoxify and methylate toxins such as Mercury. It can be helped by methyl b6 methyl B 12 and folinic acid to keep detoxification pathways working ok.
Metals can be a cause of cancer aluminium lead are the by products of industries so tests for metals may help in fibromyalgia diagnosis. Too much fluoride added to toothpaste can also be toxic to thyroid.
Glutathione deficiency.
There may be more than one cause for the fibromyalgia.
Should maybe add I had a lot of trauma in childhood and early adulthood which resulted in Anorexia , I also had chicken pox at 18 , Cervical Cancer at 25 ( had treatment and they removed all the Cancer ) given all clear 6 years or so later and at 27 got glandular fever but also had another virus ( not sure what ) but haven’t been right since . I have Raynards in both hands and feet and carpal tunnel in both hands/ arms , I also get bad neuralgia in my face and head ( first time I’ve admitted this my Nan had Trigeminal neuralgia) spelt wrong
Having written the above it looks like I’m falling apart
Thank you for asking that question - I did wonder the same thing.
I've just had another scan as I keep saying my throat feels restricted at night time. This isn't the first scan I've had but was told the nodules on the left side were still there after rai which I had 2 years ago. No-one has said that it was still there before so I wondered if it had grown again. The right side has virtually disappeared.
I never feel well despite being on 150 levo and recommended h r t to help with the extreme fatigue.My weight has increased drastically and I keep being told I'll never lose it - which is very depressing.
If I've got to have the nodule/rest of the thyroid removed would you recommend surgery over rai as the thought of possible fibromyalgia on top of everything now fears me with dread or could surgery cause this too!!!!
If I could have my time over again, I would stay on the AT drugs, but you are not me, nor with my thyroid issues.
I believe surgery is a better option than RAI thyroid ablation.
Surgery is cleaner and more precise, though I do understand nobody wishes to have their throat slit open.
RAI is a toxic substance that you drink down as a liquid or take as a pill.
It slowly burns out what is perceived to be the offending gland, but is also taken up, to a lesser degree by other glands and organs within the body, and can also damage your salivary, parathyroid, pituitary, gonads, gastric, and adrenals glands.
There is an increase in cancer rates, especially of the thyroid gland and small bowel, after RAI treatment.
Why you must ask is this treatment undertaken ?
Well, the side effects do not happen to the majority of patients, so, I suppose, if plotted on a graph, it shows it to be the cheapest and most cost effective way to deal with the medical issue - there is a percentage of people who don't do well after RAI but I presume, deemed to be so insignificant that we do not register too high in the statistics.
But we all should be told about the very real and potential health issues we might be left to deal with should we be one of the " unlucky "candidates for this treatment option.
I've been struggling with some of the above, and can't even get acknowledgment that my issues are those of RAI long term consequences, so I have been left on the side lines after referrals to rheumatology and gastroenterology and considered a conundrum by my doctor, and offered anti depressants..
Having been refused a trial of T3 on the NHS and I am now self medicating both thyroid hormones as detailed in my previous post and am much improved and getting my life back as best I can.
Thank you. I'm being referred to the gastro dept now too. It just seems the symptoms are never ending and constantly changing. I've been also told my growth hormone is high. Just waiting to see what that means when I see the consultant in Dec.
I too had RAI about 4 years ago and still have episodes of under or over active, really fed up and think what was the point of the RAI if not to stop having episodes, interesting regards tissue regroth, my latest results were 13 and 5.1 I don’t have the T3
Mine was treated with radioactive Iodine and I now have no thyroid at all. Kinda sucks that I am allergic to Levothyronine. So my doctor put me on full T3 Cytomel. I feel so much better and my hair is down to my hips.
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