Confused after radioactive iodine treatment

How do I know if i am hypothyroid or hyperthyroid after RAI? Am I Graves or Hashimotos? I don't know which books to read or which protocols to take.

When you have a blood test do you take your levoxathyrine in the morning as usual or take it after blood test? Different doctors say different things. Does it affect the results?

Do I medicate by lab results or symptoms.?

If my muscles are aching do I increase my levoxathyrine or reduce it?

17 Replies

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  • Well it rather depends on why you had the rai. Usually people have rai when they have graves disease and their metabolism is racing so fast they can't keep up.... The theory is that the medics can partially kill off the thyroid so that it works ok, but the reality is that all the thyroid is often ablated. The Graves disease remains, it doesnT go away but the horrid symptoms cause by the racing metabolism are stopped.. You can tell if you have graves or hashimotos by the antibody type and count.

    If you have hashimotos and were in the speeded up phase, then having rai on your thyroid shoulf mean the antibodies will go away. either way, whatever antibodies you have, you are Hypothyroid now and will need to take replacement hormones for the rest of your life.... Its sounds terrible, but itS ok really. IVe been on thyroid meds for half my life and it doesnT particularly worry me that i have to continue to take them.

    When you have a blood test, dont take the thyroixine for at least 12 hours before a test. Your hormones can spike and give a false reading. This was said by an endocrinologist under oath at the trial of the late Dr Skinner. ( dr S was aquitted)

    If your doctor is a bit green, or the endocrinologist you see is a bit sadistic, they will medicate you by lab results, but most of us on here would say medicate by symptoms.

    I've just been sorting through papers and read earlier that given a free hand, all thyroid patients over medicate according to the doctors...... It would seem that if everyone feels better over medicated, that the doctors have got the levels they aim for, wrong.

    Hope this helps....

    Have you looked at the website belonging to this forum? Its a good starting point. thyroiduk.org.uk

    Xx

  • Thank you so much for a simple explanation. I am currently on 100mcg and 75mcg on alternate days which I have been ok with, but this week my leg muscles and the soles of my feet are aching. Should I increase to 100mcg daily? I worry that my af will start up again if I over medicate

    Any advice would be appreciated as my doctor isn't interested in explaining and my endocrinologist has changed 3 times in the last 3 visits . There is no continuity in any treatment plan, so I just try and eat gluten free and exercise daily but the aches muscles are making it hard. I have TED from RAI but that is in remission and I am so grateful for the ophthalmic consultant who treated me. Unfortunately he has just retired so I feel as if I am on my own.

    I'm doing pretty good in comparison to this time last year, but I just need to tweak my medication for optimal fitness.

  • Hi stefcon 1 if you have Ted it usually means you have Graves as this usually one of the complications you can get with it especially after Rai which can make it worse, but you can also have hasimotos as well it all depends on what antibodies you have. did the endo not tell you what you had?.if you have blood test results you could post on here and I'm sure one of the knowledgeable people will advise you. I have graves and had Rai 7yrs ago and it's very important to keep an eye on thyroid levels as they can change a lot in the first year as Rai takes effect

  • Thank you. I will get my levels checked again. This is where my confusion lies as to what I have and how to treat either Graves or Hashimotos.

  • To be honest treatment is basically the same for either condition but it's nice to know exactly what you have,the main thing is to get right level of medication for you, and you need to learn as much as you can as some of the docs don't seem to know much about the thyroid, make sure you get printout of blood test results as docs very often say things are in normal range but normal is not always optimal for you, knowledge is power

  • How can the treatment for Graves and Hashi's be the same? Or do you mean after RAI? They're very different when you've still got your gland.

  • Did you not have your antibodies tested before the RAI? Gaves and Hashi's, both have their own antibodies. It is possible to have both at the same time, but the antibody test would tell you that.

    However, if you have RAI, the Hashi's antibodies go away, you no longer have Hashi's. But, Graves antibodies stay on. You will always have Graves.

    There's no information on your profile, but if you live in the UK, it is your legal right to have a copy of all your blood test results, under the 1998 Data Protection Act. Ask the receptionist at the surgery for as many as she can give you - there might be a small charge, but they cannot refuse, or they will be breaking the law.

    Only when you see those results will you know if you are adequately medicated. Symptoms count, of course, but it's sometimes hard to know if symptoms are from under or over-medication.

    If I were you, I would lay off the exercise until you know exactly what's what. Exercising will make you more hypo if your FT3 is not optimal. You are only on a tiny dose of levo - especially for someone with no gland! - so, my guess is you're probably under-medicated. But, you need the lab results - with ranges - to know. If you post them on here, members will help you understand them. :)

  • Thank you. I will get my bloods done again. Can you tell me what I should be requesting as I

    My doctor only does FT4 ,TSH. and occasionally cortisol. Should I be requesting anything else. Last results in Sept were:

    FT4. 18.8

    TSH. 0.01

    Cortisol 633

  • Request the ranges, for a start! :) The numbers mean nothing on their own.

    What you really need is your FT3 done, but I know how difficult that is. Ask your doctor if you have had your antibodies done - if not, will he please do them, then! Graves antibodies, that is. Then you will know.

    But would be really great would be to get private tests done, if you can. You want :

    TSH

    FT4

    FT3

    vit d

    vit B12

    folate

    ferritin

    It could that, although your FT4 looks good, you aren't converting your T4 into T3 very well. But you won't know unless you have your FT4 and FT3 tested at the same time.

    It could very well be that you have nutritional deficiencies - most hypos do. Your nutrients need to be optimal for your body to be able to use the hormone you're giving it. And, optimal is not the same as just 'in-range'. But, you need to get tested to know. :)

  • Thank you very very much.

  • You're welcome. :)

  • Hi grey goose of cause I meant after Rai as in Stecon 1 case sorry did not make that clear

  • Ah, ok. You confused me there, for a moment! lol

  • Stefcon, if you are in the U.K. And can afford the £99 (I think) then order a BlueHorizon home fingerprick bloodtest. I use Thyroid 11 and get everything GG had listed above plus thyroid antibodies. You go online select the test, pay for it and it arrives through your letterbox next day. Everything you need is in the kit, read the instructions do as it says and pop everything back in the envelope they include and pop it the post. I always post it off early in the week so that it doesn't lie in a sorting office over the weekend. Two days later your results arrive in your mail box. No fuss, no begging and pleading with doctors. The lab ranges are likely to be different to what your doctor will have but I found I was always at the same place within the range as I was with my hospital blood tests. Can't recommend them highly enough.

  • Wow. Thank you. Will order one.

  • 'No fuss, no begging and pleading with doctors.' Only £99. LOLZ

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