had RAI in May, but stating to feel just as ba... - Thyroid UK
had RAI in May, but stating to feel just as bad as before. Dreadful headaches and depression...anyone else or is it just me?
Are you not in care of an endocrinologist after RAI? I feel you should be taking these resurgent problems to your GP and seeking adequate thyroid blood testing, referral to endo. They will not know if anything needs adjustment if they do not know anything is wrong.
have not seen anyone since rai, they said it would be fine now.... have made gp appointment for next week. thanks.
Hi Sue
In short - no it's not just you. Although it's a long time ago now, I had RAI and was effectively dumped to get on with it afterwards with virtually no information or support afterwards.
I was totally ignorant and while waiting for a follow up appointment to come from my GP as promised by the hospital, I was very very ill. The appointment never came because the hospital had failed to notify my doctor.
My judgement was really impaired and I didn't realise I had become so hypothyroid (because they had told me to continue carbimazole while waiting for the RAI to take effect) that I was on the verge of a coma. Fortunately my husband called 999 when he couldn't wake me one morning.
I'm not saying this is going to happen to you - but tell my story only as a warning that you need to be insistent and follow this up with whoever is responsible for your after care. The lack of information given and the casual way they treat thyroid conditions is deplorable and the way towards getting better is to take the lead for your own health.
I and many others on this site will give a 100% guarantee that depression is a symptom of low thyroid. Unfortunately, in many cases, GPs fail to recognise this and instead tell patients, 'it is not your thyroid you are depressed'. Then send them packing with a prescription for anti depressants. For many, including my sister, this leads on to a path no one wants to go. So without wanting to be dramatic about this, please make sure you push to get your thyroid levels optimal for you. A really good starting point is to get copies of all your blood test results and then post them on here for further advice.
You can and will get better with the right treatment and support.
Wishing you well x.
editfmrt, I could not agree with you more.
I was diagnosed with graves Christmas eve after a doc appointment thinking I was stressed! Sent me to hospital there and then, kept me in all week, Now had rai in May but no follow up or tests. Feeling rotten again, not sleeping, very tearful and so tired. You have made me feel better about going to doc next week, tend to think I should be able to manage my life myself, but can't any more. Will post results asap. I really appreciate this site, and will "gen" up a bit better now before going next week. .
Sue
I can't believe they have left you since May and no follow up. This is disgraceful. What the hell do they think was going to happen to you after treatment? This makes me furious.
Here is an extract from Mary Shoman Page:
Note to Patients: If you are going to undergo radioactive iodine treatment, make sure your schedule a follow-up appointment with your physician no more than six weeks after the RAI, and insist on your doctor doing a Free T4 test. TSH can still remain suppressed after RAI, and is not an accurate gauge of whether you have become hypothyroid and warrant treatment.
thyroid.about.com/b/2013/07...
I went severly hypothyroid within 2 weeks of treatment mainly because the idiots hadn't told me to stop carbimazole, so for me, this advice of within six weeks was too long.
You could do with having a full thyroid panel blood test taken in advance of your appointment otherwise your GP will just send you away to get the tests done....
Can you have a consultation by phone and request a blood test form so the results are back for when you see him?
Did mean to say - at least your GP was on the ball and recognised it. I thought I was suffering from stress because my GP gave me anti anxiety meds and anti depressents for nearly two years. Ended up with a thyroid storm and nearly snuffed it....
sorry, editmfrt, we must have been pounding our keyboards at the same time, my comments on my treatment on producing I/net info were because of my bad personal experiences. Medics would not even accept or read research from very reputable sources, an experience we share I know.
Believe us all, there is no way you can manage your life alone with this condition, you need help, the stiff upper lip approach in the face of a complete lack of proper medical attention does not work.
Long quotation from Colin Dayan's and Gilbert H Daniels MD "Fast Facts: Thyroid disorders" starting page 56:
"In some individuals the onset of hypothyroidism after radio-iodine can occur within 4-6 weeks. Repeat thyroid function testing is advisable at 4 weeks and then at 2-3 month intervals. T4 levels - not TSH levels (which may remain suppressed for as long as 12 months after treatment of hyperthyroidism, even after the patient has become euthyroid or hypothyroid) should be used to monitor the response until TSH level becomes detectable. The risk of hypothyroidism continues for up to 20 years and patients who remain euthyroid after one year should continue to have thyroid function tests at 6-12 month intervals, either indefinitely or until thyroxine is required.
If hypothyroidism develops in the first year, full doses of T4 (levothyroxine) e.g.100mcg or 1.6mcg/kg/day can be used immediately to alleviate symptoms, rather than titrating up from very small doses, as the hypothyroidism is known to be recent onset. The thyroid is generally no longer palpable when permanent hypothyroidism occurs after radio-iodine therapy for Graves disease, but transient hypothyroidism (thyroid stunning) is common in the first few weeks or months. A persistent goitre or easily palpable thyroid is a clue that "stunning" rather than permanent hypothyroidism is present."
Colin Dayan MA FRCP PhD Head of Clinical Research Henry Wellcome Laboratories for Integrative Neuroscience and Endocrinology, University of Bristol.
Gilbert Daniels MD\ Professor of Medicine Harvard Medical School. Co-Director, Thyroid Clinic Massachusetts General Hospital, Boston, Massachusetts.
I give the authors' credentials as I have been blasted several times as having "health anxiety" or being an "internet freak" when I was actually very ill (walking wounded) so I know what some medics can be like, and so does editmfrt in her heroic efforts for her sister.
Please take as much rest as you feel you need, it does little good to try to push yourself at this point.
Never, ever believe any one saying "you will be fine" or "you're OK, all normal". Believe in what your own body is telling you, it is telling you everything is not fine. Get copies of all blood tests, just ask your GP, they must give you a copy when you ask, but GP has to see blood test first. with the copy then you can post accurately here with the vital ranges, please, and get further advice. You must have seen an endocrinologist before your treatment, insist on going back to them for informed monitoring if your GP dismisses your concerns. You mean that nobody has reviewed your thyroid state since May? This means they do not know your current thyroid state. In self-protection you really need to learn about your thyroid etc., good place to start is the main site:
Loads of thyroid info, just use the menu left hand side.
My apologies if I am speaking to the already converted but I would like to rescue others from the dire neglect I have suffered in the past. Knowledge is your power.
Best wishes.
thanks, you have made me feel i can get through today.
Regarding post-op treatment you can buy Dr Toft's little book "Understanding Thyroid Disorders", Dr T past head of the BTA, plus Book is BMA publication, £5 from chemists/Amazon, so GP cannot argue with content of Pp24-25 and emphasis on post-op monitoring. Very useful, portable book no medic can sneer at or refuse to read, as it is by one of their own.
is there a link to use so this site benefits please?
sueOO4, if you mean buying the Dr Toft book to benefit the site then I think you can buy it from Thyroid UK, just use the link and look around the site
I feel as strongly as you nostoneunturned. The neglect of me was quite shocking and dangerous too and not one iota of concern shown for the fact my children nearly lost their mum. I am still shocked this can and is still happening.
Why do these plipping posts keep jumping into the wrong place....grrrr
Such a lot gets covered up in the NHS.- it's only the occasional escape of really baaad info that breaks through finally to the press.
So many people trust them or we wouldn't go there- but numbers must be falling fast.
Is this what's driving the subtle push to incorporate private medicine into the NHS by one means or another?
Let's face it- this lot in power have presided over multiple decades of the 'same old ,same old' that led to this current malaise, haven't they and wouldn't want too heavy an eye cast on the NHS.
[& I thought 3 card tricks in the street were illegal 
]
PS I can see me having to get Tofts book eventually for my surgery- as he is one of their own, as oft stated
I know you had dreadful and unnecessary experiences and it was and is a disgrace you had them., and it is a disgrace that such terrible events still happen. Also agree with your post sequence observation, it is pretty bad.
I know exactly what you are going through having been there myself.... Unfortunately you have to take the bull by the horns, when you are least able, and go to your doctor and ask for help and don't take no for an answer or accept antidepressants as they are of no help and a waste of money.... You need to have full blood test for t4 and t3... It is very sad that your story is all too common when people have RAI. I wasted 11 years of my life listening to a GP who hadn't a clue what she was doing before eventually being sent to an endocrinologist who diagnosed me with a conversion problem. I now have a letter from him saying that I must have my t3 due to my health history and it must not be stopped even for a short time....Only you now how you felt before you had your thyroid health issues and that is what you aim for in your return to well being. Wishing you good health and best wishes Janet
Hi, I also had RAI in March, I have admit I was expecting some immediate results, but now I have been told that it can take anything up to two years before the treatment takes effect. I think if you are still feeling the same you need to speak with your GP/Consultant to see what help you can get just now.
Hi Sue, sorry to hear you feel so awful. I had a similar experience after RAI. Although I had a follow up with the endo a month after RAI but I saw his sidekick and despite having obvious hypo symptoms (to me anyway) I was told that my levels were 'normal' and had to 'learn to live with a slower metabolism', and promptly discharged me from outpatients. Over the coming weeks I got worse, and totally confused mentally. One day I was just unable to get out of bed and felt everything was 'closing down'. My husband took me to GP who ordered blood test - my TSH was 75+ and my FT4 was 3.5 - no wonder I felt so ill. The GP was horrified and obviously got things moving very quickly. Please don't let yourself get into that scenario, go to your GP and insist on tests and a referral back to your endo.
Good luck and I hope you feel better soon.
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