Does anyone with thyroid problems have any positive experiences?

I was diagnosed with an overactive thyroid almost two years ago, prescribed Carbimazole, and have been for several blood tests, and most recently had a scan for a suspected goitre. I have had several appointments in the Endocrinology dept., but have only ever seen the nurse practitioner, but never the "main man". She has suggested that the best solution, as my T3 & T4 levels are still above "average", is surgery or (radioactive?) destruction of my thyroid. I have resisted, and related an issue my mum had 25 years ago, when she refused surgery, as, like me, she wasn't suffering with all the usual symptoms of an overactive thyroid. She was berated by her consultant, who told her she was a foolish woman, and that she would probably end up having a heart attack!

She asked for a second opinion, and was referred to a professor at the Manchester hospital. He was sent her notes / results, and she went to see him. Having talked to her, he said that surgery would have had a devastating effect on her, as some people need higher than normal levels of T3 & T4 to function normally. He also said that he was appalled that no-one had actually listened to what she was saying - not just relying on results on paper. My mum is still alive at 82 ( and very compus-mentis) and has even said to the endo's assistant that they can access her medical records, to confirm all this, but they won't. Unfortunately, the professor she saw has retired, so I can't go to see him, and though I'm seriously considering asking for a second opinion, I'm not sure whether I'll be jumping from the frying pan into the fire! (Hence the title of this post!) Having read / watched this group for quite a while now, I have never seen anyone who posts that they've had a successful outcome of anything! Does surgery ever solve anyone's problems? Does anyone in a hospital ever actually listen to a patient who, despite being reasonably intelligent (duhh, I do have an honours degree...) doesn't feel anything other than frustrated and annoyed after any appointment? Is going private an option? If so, is there anyone in North West England anyone could recommend? Would rather spend my kids' inheritance to get this sorted than carry on like this! Any advice would be gratefully accepted!

23 Replies

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  • hi there ' annie' , yes I have some good news to pass on .....but will pm you later with the FULL details [ they are a bit long winded ] of how we have sorted my lady's problem to date ......alan xx

  • Brilliant! I'll look forward to receiving that! I don't care how long winded it is :-) Annie x

  • I'd like to see your reply too!!

  • My husband has been where you are and accepted surgury

    if he could have his time again he would do what your mum did and refuse especially if you have no symptoms of Graves Disease

  • Thanks for replying - sorry to hear that it doesn't seemed to have been good for him. No, I haven't, they have done specific tests to check for that ( one of many...) Your husband's situation (now) is what I'm trying to avoid. Hope he feels better soon, Annie x

  • Annie,my husband had surgery over 30yrs ago its only the last 8 yrs he has felt pretty well only thanks to Armour thyroid ...he was left untreated for years then given lousy thyroxine , then t3 but the only way he or our daughter or grandaughter feel well is on Natural dessicated thyroid

    Our daughter andcgrandaughters only have Hashimotos whereas my husband had Graves and then Hashimotos

  • Do you feel completely well? If so, do not let them touch you. Just keep on as you are doing and hope you are just like your mother, I had TT for Graves in 2006 and am still not right and probably never will be. It is also very wrong that a nurse is giving you serious advice like TT or Radioactive treatment. You should definitely be seen by an endo, although I doubt if it will make any difference in the end to their advice. I was being treated privately but received no better care. Just did not have to wait so long for appointments! Good luck. I hope you find someone who will give good advice.

  • Hi, thank you for taking the time to reply - I'm sorry to read that you're still not well. Your experience of the private route is (and must have been for you) disappointing. Thanks for the "good luck" wish - if I ever do get a positive outcome of all this I'll be sure to post it on here. Annie x

  • Hi Annie

    If any hyper symptoms are under control, then I don't see any reason why you need to go to the next level of radio active iodine (RAI) or surgery, which will/may leave you underactive, depending on extent of intervention, and as you have observed many people on the forum struggle with hypothyroidism.

    When the nurse practitioner says your T3 and T4 results are 'above average', does she mean that they are higher than the top of the reference range? You can be above average but still be in range; and you can be above range and be OK though that might be quite rare but not impossible (like your mum).

    More of a problem is when a goitre develops and this is where my experience comes in. I was neither hypo or hyper but had a goitre and so was not on any treatment. However, after about 7 years the goitre grew to such an extent that I had problems swallowing and breathing while asleep - it wasn't too obvious externally, the problem was that it went in the way. The solution was removal. I am fortunate in that I have been fine on thyroxine - 100 mcg until fairly recently when I need to reduce it to 75mcg, based on both blood tests and symptoms. I probably need a slight increase but if I increase too much it pitches me into over-medication (i.e. hyper) symptoms.

    So yes, thyroid treatment, even as radical as total thyroidectomy, can be successful.

    I wouldn't take the nurse practitioner's word for it - can you ask to see the consultant? Related to something else altogether, I saw a nurse practitioner who contradicted what the consultant had told me and advised me not to get the treatment proposed by the consultant. I phoned the consultant and double-checked with him and in the end went with his view and had a successful outcome.

    Best wishes, Liz

  • Thank you for your reply, Liz, it's good to hear that someone has had a successful, and under - control outcome. I have an appointment on 16/06, which is usually with the nurse practitioner ( I have never met the Consultant, though have received a letter from him requesting more blood tests - these were going for testing at an alternative laboratory ) but at least now, after reading your, and other people's replies, feel more confident about insisting that I actually see him for once! Annie x

  • I should have said I had the TT in 2002, so have been ok for quite a long time. Let us know how your next appointment goes . Best wishes.

  • I am hypo so I am surprised you have only been seen by the Nurse - not good enough. I thought you would be seen initially by a Consultant.

    It is fine for some to recommend whipping out your thyroid gland which will render you hypo - which I would wish on anyone. The following is an extract from Dr Toft of the British Thyroid Association in an article in Pulse Online:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

  • Hello, back, sorry I haven't thanked you for your reply before now, we've been away for a few days. I was interested to read the extracts you have attached. I will definately go to my next appointment armed with more information, a notebook and more informed questions. Thanks, Annie x

  • I'm sure your kids would much prefer their mum to be well than have an inheritance.

    I've got Graves and can't believe you have never seen the 'main man' or at least a lesser endocrinologist. It seems really amazing that a nurse practitioner could be advising you to have RAI or a TT.

    Why not drop Louise at TUK an email and ask her to send you the list of doctors that others have found helpful and see if you can find someone good near you.

    As a fellow Graves sufferer it is really encouraging to hear your mum is still going strong and still has her thyroid in tact.

    Good luck :-)

  • Hi , Iam ok and feel ok, I had TT last june and haven't looked back . I had multi nodular left gland and only half left on the right which was operated 1985. The preassure feeling was making me mad as they pressed against my throat and I wasn't going to put up with that any longer and I knew they had to come out eventually anyways. So here I am minus thyroid glands and feeling pretty ok. I haven't put on any weight and plod on normally at work and home. Slightly tired but at 55 who isn't? Levothyroxin at the moment is 75 and I know it seems pretty low for TT patient but my blood tests indicated that I had to drop it from 100. I feel totally ok with 100mcg too only thing though is that as soon as I go lower on Levo my cholestrol raises quite a lot ( like 5.6 to 6.1 ) Now I expect it to be high again in July bloods.

    Good luck too :O)

  • Even as I write this I touch wood. I was told I may have cancer in 2010 in the lump on my thryoid and they were going to operate in two weeks. I know now I had symptoms of hyper, mainly losing weight, hair and rushing to the loo, hot sweats which I thought were menopausal. I hung on and ask for fine needle aspiration. In the two weeks between the scan that questioned cancer and the results, my thyroid had changed again. This time they said it was thryoiditis triggered by extremely bad throat infection (followed by weekly infections for six months). I was put on carbrimazole and told to do the block and replace method but after researching (and later confirmed by other people on this site) I decided to try the monthly blood tests and then alter the dose of carb accordingly. I took propanalol for palpitations, cut out wheat, caffeine and back on booze. Changed diet, added supplements had a year of acupuncture and still have massage. From 40mg of carb daily I now take 5mg every few days. I feel well enough to train and run a 10 k race - first ever - and raised £800 for Help for Heroes (my son is a medic). I did it in an hour and four minutes. I feel well and that I have been able to take some control of my health. In August I stop the carb to see what happens, so touching a forest of wood...... but if it comes back I am aiming to go for minimal treatment as long as I feel well. It really helps that I'm a journalist and always always take into any consultation my notepad, I'm as charming as possible ( the consultant and secretary sponsored my run!!) and write up the notes. Write up my results and get a lot of expert support from this site which has been invaluable. If all goes pear-shaped in the future and I have to take more serious steps then I will feel very glad I tried, my way.... touching wood...best, Tilly

  • Annie, my sister has Graves and TED and was advised by her endo to have RAI to avoid her eyes deteriorating but we now know RAI is contraindicated and her eyes have got worse. She's otherwise happy on Levothyroxine and is a gnat's under medicated but refuses to increase her meds because she is terrified of going hyper. She ran her first 5K a month ago.

    Nevertheless, I wouldn't fry your thyroid as long as carbimazole is working for you. You will have to deal with blood tests and taking Levothyroxine when you're hypo, so what;s the point?

  • Hi, back, sorry I didn't reply when you posted this, for some strange reason I've only just seen it! Odd!

    Things have now moved on a bit, I refused to have RAI or surgery, as I felt that it was too soon to opt for something so irreversible, also, having never met the endocrinologist (only his nurse practitioner) I didn't see how he could be suggesting either option without a face to face appointment - I also felt aggrieved with the arrogance of the man! How dare he suggest something which could have fairly big repercussions on my body / well-being on the basis of some blood tests, and notes taken by one of his sidekicks (ooops, sorry, "team")

    I had another appointment this week, with another "team member". Since the last one I have done a lot of reading on here, and other websites & forums, and went armed with a list of questions, and a notebook. In between this, and the last appointment I had received a letter from the invisible endocrinologist requesting that I go in and have a new set of blood tests done, as the ones taken at the previous appt. were showing some "unusual results". He stated that he was going to have it tested at their lab in the hospital agin, and if the "unusual" readings came back again, he was going to have them tested elsewhere. At this week's appt, I was hoping to discuss what these "unusual results" were...but it turns out that there is no trace of any results / reports from the re-test! He tried to blame my GP surgery, and said that they hadn't requested the correct tests....so I pointed out that the blood had been taken at the hospital (about 10 yards from his office) so, back-pedalling like mad, he proceeded to show me copies of the endo's letter to me (I know....fgs, I read the one that came in the post....) and the one he'd sent to the guy in charge of the lab...that made more interesting reading, in that he stated that he HAD recommended RAI to "help me" but NOW wanted to make sure of these "unusual results" (it would have been a bit late if I had agreed to have that done 6 months ago, as they had wanted to do!) so....I asked this new guy what had prompted the re-test, and he said that all my levels have now gone back to within "normal" range, apart from FT3 which is still high. I asked what that meant, which he "couldn't say" and said I have to call them tomorrow morning, once the new set of results will be through, and that I've to go back in 6 weeks. Hmmm, really informative...DOES ANYONE ON HERE KNOW WHAT THIS READING SUGGESTS? It may save me hours of searching....I did suggest that maybe my daily intake of Carbimazole is now too high (20mg) and asked if I could have swung too far & into "hypo" as I have none of the original "hyper" symptoms, apart from hot flushes, which may be menopause, and I'm putting weight on at a rate of knots at a time when I am eating more healthily than ever before....I also told him that when this all started, I was in an extremely stressful situation at work, which is now no longer a problem (as I resigned!) so could it have just been a temporary thing? Again, he "couldn't say".....and said that I should 'phone tomorrow....WHAT'S THE BETTING THAT NO-ONE ANSWERS!! Good grief! How frustrating is this!! Oh, and forgot to say, I had negative results for Graves (had to ask that, too)

    So sorry for this rant! Publish it to anyone on here who may want to read it...even if for no other reason than to encourage others not to accept RAI or surgery straight away, and without doing lots of research, etc. It strikes me they just want to get you out of their hair, and tick a box that says you're fixed!! There is no consideration of the consequences. Ah well, till tomorrow morning...will I get an answer? a) to my call b) to my questions...we'll see - not too optimistic at the moment! Annie xx

  • Annie, none of it inspires you with confidence does it? :( Elevated FT3 means you are still hyper and FT3 may just be lagging behind TSH and FT4 in responding to Carbimazole. If you post your new results tomorrow we may be able to get a better idea of what's going on. Ask for the lab ref ranges when you get the results. BTW weight gain in hyperthyroidism isn't uncommon.

  • Thanks for your reply - I'm glad that someone can give me a simple answer to the FT3 question! Maybe you could come and take over from the invisible man at our local hospital :-D I will post the results, if I get them tomorrow. Oh, rats to the weight gain! Have put back all I lost (and some) from when this all started…yo-yo's the word - just wish I could be fat & jolly (partner telling me that "voluptuous" is good just ain't convincing me - though bless him for trying!) Till tomorrow, tx, Annie xx

  • After having a TT in 97 at a young age I would suggest you don't. I have never felt well since, thyroxine is a joke and your doctor will fob you off when you get ill saying he knows nothing about it. Since having children things have gone further downhill. If I had my time again I would not be influenced by doctors who seem to just want an op to solve their problems but with no regard for future well being of the patient. Wouldn't touch RI either. Good luck.

  • Hi, Mrs.B, I have just sent a very lengthy reply to "Clutter", and I don't know if it will be visible to everyone, so here's a copy, as I wanted you to see it...

    Hi, back, sorry I didn't reply when you posted this, for some strange reason I've only just seen it! Odd!

    Things have now moved on a bit, I refused to have RAI or surgery, as I felt that it was too soon to opt for something so irreversible, also, having never met the endocrinologist (only his nurse practitioner) I didn't see how he could be suggesting either option without a face to face appointment - I also felt aggrieved with the arrogance of the man! How dare he suggest something which could have fairly big repercussions on my body / well-being on the basis of some blood tests, and notes taken by one of his sidekicks (ooops, sorry, "team")

    I had another appointment this week, with another "team member". Since the last one I have done a lot of reading on here, and other websites & forums, and went armed with a list of questions, and a notebook. In between this, and the last appointment I had received a letter from the invisible endocrinologist requesting that I go in and have a new set of blood tests done, as the ones taken at the previous appt. were showing some "unusual results". He stated that he was going to have it tested at their lab in the hospital agin, and if the "unusual" readings came back again, he was going to have them tested elsewhere. At this week's appt, I was hoping to discuss what these "unusual results" were...but it turns out that there is no trace of any results / reports from the re-test! He tried to blame my GP surgery, and said that they hadn't requested the correct tests....so I pointed out that the blood had been taken at the hospital (about 10 yards from his office) so, back-pedalling like mad, he proceeded to show me copies of the endo's letter to me (I know....fgs, I read the one that came in the post....) and the one he'd sent to the guy in charge of the lab...that made more interesting reading, in that he stated that he HAD recommended RAI to "help me" but NOW wanted to make sure of these "unusual results" (it would have been a bit late if I had agreed to have that done 6 months ago, as they had wanted to do!) so....I asked this new guy what had prompted the re-test, and he said that all my levels have now gone back to within "normal" range, apart from FT3 which is still high. I asked what that meant, which he "couldn't say" and said I have to call them tomorrow morning, once the new set of results will be through, and that I've to go back in 6 weeks. Hmmm, really informative...DOES ANYONE ON HERE KNOW WHAT THIS READING SUGGESTS? It may save me hours of searching....I did suggest that maybe my daily intake of Carbimazole is now too high (20mg) and asked if I could have swung too far & into "hypo" as I have none of the original "hyper" symptoms, apart from hot flushes, which may be menopause, and I'm putting weight on at a rate of knots at a time when I am eating more healthily than ever before....I also told him that when this all started, I was in an extremely stressful situation at work, which is now no longer a problem (as I resigned!) so could it have just been a temporary thing? Again, he "couldn't say".....and said that I should 'phone tomorrow....WHAT'S THE BETTING THAT NO-ONE ANSWERS!! Good grief! How frustrating is this!! Oh, and forgot to say, I had negative results for Graves (had to ask that, too)

    So sorry for this rant! Publish it to anyone on here who may want to read it...even if for no other reason than to encourage others not to accept RAI or surgery straight away, and without doing lots of research, etc. It strikes me they just want to get you out of their hair, and tick a box that says you're fixed!! There is no consideration of the consequences. Ah well, till tomorrow morning...will I get an answer? a) to my call b) to my questions...we'll see - not too optimistic at the moment!

    As you can see, Mrs.B, I agree with you!! I'm glad (at the moment) that I've been being difficult...your situation confirms that they don't "give one"(as I thought) they just want to achieve some target or other, regardless of the consequences to the likes of you & me. I may regret my stubborn -ness, but I'm prepared to take that chance! After all, once they've either destroyed or removed your thyroid, it ain't going to grow back, is it! I need to be a lot more convinced than I am at the moment...am definately not doing anything without a second opinion.

    I hope things do improve for you, and that sooner or later the medical profession wake up and "sniff the coffee" on the subject of hypo / hyperthyroidism-at the moment it's a joke.

    I will update on here after tomorrow's call...if I get a reply, that is!

    Annie xx

  • Annie,

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