Possible Thyroid Removal

Hi I've been back to the doctors as I've been feeling awful, doctor confirmed my goiter hasn't shrunk after RAI treatment ( I have hashimotis ) and because my neck is so swollen ( doc said my thyroid should look grey on scan but mine looks black ) I've been put on steroids, the consultant said that sometimes after RAI some people can get Thyroiditis, which I have ! I have to wait for swelling to go down before I have a full neck scan to see what's going on, check my lymph nodes etc as they have swollen too, wait for blood results to come back this thurs and do a 24 hour calcium test tomorrow, the consultant has mentioned that when I see her again in 4 weeks I might have to look at getting my thyroid removed if nothing improves, any advice on thyroid removal would be great please. thank you x

10 Replies

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  • Thyroid removal should have been 1st resort not the last

    RAI is a total, no no in my book seen and heard too many horror stories of its effects

  • :-( you trust your consultants thou don't you! It's been awful time, I'm just not getting or feeling any better, I had the RAI in April x

  • I no longer trust any single doctor although I am very lucky to have a wonderful GP and also good health ,but I have never forgotten how ill I was for 2 years over 30 yrs ago and how useless the entire medical profession was to me then ...it was a Homeopath who spotted the cause in 10 mins flat

    I research and research everything they say

    I shall never forget thou what so many thyroid /RAI patients told me back in 1960s when I worked for one of 1st doctors to give RAI and then when my husband was told in 1980s that RAI was not safe in anyone under 40

  • If you have hashimotos the thyroid cannot work to make hormones. It loses its ability gradually because it s being attacked by antibodies. In an effort to Make more hormones, it makes itself larger by growing a goitre.

    The remedy is to give you thyroid hormones, preferably enough so your thyroid doesn't have to do any work and can quietly die off. The thyroid doesn't need to be stimulated by tsh because you donT need it to work.

    Thyroiditus is sort of what the consultants call the hypothyroidism caused by insufficient hormone.

    Whilst all this was going on were you given thyroid hormones? Its the usual first line of treatment. Rai isn't used very often for hashimotos,

    What thyroid meds are you on and any idea what your free t3, free t4, tsh and antibody levels were when they were last tested?

    Your treatment sounds appalling.

    xx g

  • Thank you for replying, I was diagnosed with an underactive thyroid, B12 deficiency and low Vit D In November and was put on 50mg of thyroxine then, the goiter didn't go down and my health went down hill from January. Went private and saw consultant in feb then April I had RAI. At the moment I've been told I'm having hyper symptoms, hot flushes / heart palpitations etc and my doc said my body is all over the place, I could all of a sudden drop to hypo. Had bloods done again and getting results Thursday. It's all so confusing !

  • After you had been on a starter dose of levothyroxine for six weeks.... the usual method is to take blood tests, And then give you a dose increase. It takes 6 weeks for any new dose to make any sort of difference. so that would have been sometime in January.

    The rai, will have more or less knocked out your thyroid, so have the docs put you on thyroid hormones which are being tested and dose adjusted every six weeks?

    Its no good telling you that meds are for life if you aren't being given enough of them to have a life. Hot flushes, palpitations and so on can all be a sign of adrenals struggling to cope when they are eing left to help you through lack of thyrod hormone.

    One of the easiest ways for you to monitor what is going on, is for you to download a chart from dr rind com. (Link below). Take your temperature three times a day! 4 hours after waking, then 4 hours later, then 4 hours later. Add the temps up, divide by 3 and plot the average on the charts. If the temps are up and down all over the place adrenals are struggling, if they are steady but low its thyroid struggling. I did temps for a couple of years and it was great to see how it changed as I got better.

    What meds are you actually being given at the moment?

    G x

    drrind.com/therapies/metabo...

  • Hi thank you I will do that, at the moment I'm taking 50mg thyroxine , Vit D, B12 injections every 3 months and steroids for a month to get this swelling down, just waiting for blood results to come back this week and doing 24 hour calcium test tomoz. The consultant said she needs the swelling to go down so she can see lymph nodes as they have swollen too. Apparently my neck is abit of a mess ! She said once bloods back she will know what dose of thyroxine to put me on but it could drop dramatically down when thyroid stops. When this happens I'll have to take a higher dose of thyroxine. Thank you for replying back I really don't know anyone that's gone through anything like this so it's nice to talk to someone who understands how I'm feeling x

  • Mmw-15, I'm surprised RAI was used to remove a goitre. Thyroidectomy is usually a day operation with an overnight stay. The length of the operation will depend on how large the goitre is. A drain is usually inserted to draw fluids which lessens swelling and bruising. The drain is usually removed before you are discharged. You're advised to have plenty of fluids and soft foods available in case there is pain swallowing. I felt fine and was eating sandwiches after one operation and toast and weetbix next morning after another. Thyroid meds were started the morning after the completion thyroidectomy.

    I didn't have any complications other than low calcium for a few days which self corrected luckily as I didn't feel well enough to return to the hospital (3 hr round trip by public transport) to collect the prescription. Healing was good on both occasions and I have a very fine white scar in the hollow of my throat. Depending how large your goitre is a larger incision may be required and the scar will be longer. The stitch (one long running stitch) was removed 7-10 days later.

    I was very fatigued and you'll be advised to rest for a couple of weeks. After the completion thyroidectomy Hashimoto's attacks stopped, presumably because the target thyroid had been removed and symptoms which I'd previously been told were 'non-thyroidal' stopped.

  • It's refreshing to hear your story, I really wish I had just asked them then to take it out, I'm sure I would be a lot better than I am now, the op wasn't an option at that time, it was just a clear "RAI" fix it! The consultant has said to take the steroids for a month to get the swelling down before they can do the scan because at the mo it's all too swollen, if then it hasn't worked then I might have to have it removed, I'm on meds for life now so a stronger dose wouldn't matter, just want to feel well again, I've actually forgotten how well feels :-(

    X

  • Mmw-15, I don't regret the thyroidectomy and am relieved it stopped the Hashi symptoms which had continued after partial thyroidectomy. I was recovering on T3 but I had a very bad time on T4 only after RAI but things are okay on T4+T3. I feel well most of the time although I tire easily and am still rebuilding fitness and stamina.

    If you don't know what your vitD status is ask your GP to test it. 40% of thyroidectomised patients are found to be vitD deficient. Improving vitD levels improves surgical outcomes and wellbeing.

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