Thyroid UK

thoughts ,help and advice please

i havnt posted for a while here ,but, would like some thoughts from far more informed people if possible .

my lady has had a thyroid problem - with other issues- for the past 5 years , this has been treated exelently by our superb gp [ who tests regularly for tsh,t3,t4,ferretin ,follate vitd3etc.together with the various endos we see at the hospital [ barts] .

depending on the current test results during the past 5 years the ''cocktail'' of meds has been adjusted accordingly with no particular side effects current tests are as follows ==

tsh....7.47 [0.35 - 5.5 ]

t4...13.4 [10.0 -19.8 ]

t3...4. [3.55 - 5.44].....taken 0n 3/1/18

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tsh....2.18

t4......17.4

t3.....3.7..........taken on 21/2/18 ...[ all ranges the same ]

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she in on 5mg of carbimazole and vitd3 suppliment only per day

my understanding is that apart from the t3 needing to be raised the others are being brought into line slowly and surly with no detrimental effects to the patient .

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my concern is that during the latest session with the hospital endo she stated that she wanted to carry out a total throidectomy -- because the patient would be on carbimozo;e for life --- i stated that with the surgury she would then be on another med for life and would they consider alternatives to levo if levo didnt work ...ie.ndt ,t3,t4,or combo.........to be told that ''''in my experience levo is the best way forward '''

my concerns are that if they go ahead with the surgery --- the is only slightly enlarged thyroid at this time with no apparent adverse effects WHAT IS THE NEED FOR SURGERY ???? WHAT WILL THIS BENEFIT THE PATIENT ???? WHAT THEN HAPPENS IF IT THEN GOES PEAR-SHAPED FOR THE PATIENT .?????

I WOULD REALLY APPRECIATE ANY THOUGHTS THAT YOU MORE KNOWLEGEABLE PEOPLE CAN PASS ON TO US ........alan x

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I hope someone more knowledgeable about Graves' Disease will be along to comment shortly, but I just wanted to respond initially by saying that if your partner feels well on carbimazole, there is no good reason, so far as I know, to contemplate surgery. We do see a few people on the forum who are doing well on meds, who are nevertheless being pressured into thyroidectomy. This kind of pressure is unethical, and I would urge your partner to stand her ground if she wishes to continue as she is now.

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thank you for your reply ......thats exactly what my feelings are about the surgery --- if it aint broke dont try and fix it !!--- and as there are no particular adverse effects from adjusting the meds , as and when ness from time to time - with no problems from the gp in keeping abreast of the situation with no adverse effects to the patient , WHY take a different route that could have a miriad of future problems that can come up to effect the health situation .....alan x

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Hi Alan

I had graves and went on to have the RAI treatment and its been a long journey to try to regain my health back. It's been 8 years and still struggle. In fact I'm just in the process of upping my meds again as my medichecks results indicate my levels have dropped again. I have had to fight all the way. Live in fear my t3 will be withdrawn.

My personal opinion would be if your wife is stable and well on carbimazole leave well alone.

As your consultant has already stated you only need one pill and all will be ok tells me they are not open to combination treatment. Once your wife has the treatment and back in what they call normal levels you will be discharged into GP care.

Whatever you both decide I wish you well. X

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exactly my own thoughts....if it aint broke DONT FIX IT !!!!

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forgot to say in my reply that the endo STATED that the ONLY treatment she is willing to give after surgery is LEVO and nothing else , because ''in her experience it always works '' ...... i think she needs to look at some of the posts on here and elsewhere and check on to some specialist doctors , professors and published findings ------ my personal opinion of course , but as you know i have been on this forum for some time now and have a little more knowledge than some others !!!!

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I am Hypo and have no experience of Graves, however if your lady is happy on Carbimazole and doesn't want a thyroidectomy then she doesn't have to agree to it. You are right, she could very well be far, far worse off if she goes ahead with the surgery and ends up on Levo - many posts on here will attest to that!

I have a friend on Carbimazole who has been on it for donkeys years, she knows herself when to adjust it and does very well. Although her GP wants to change things she refuses, saying she is fine as she is and has been for years.

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slight difference our gp doesnt want to change and is happy to carry on with the tests and adjusting meds when ness WITHOUT ANY NEED FOR SURGERY ......so why does the endo ONLY reccomend surgery and then continue with ONLY levo ??....while she is fine at the present time on the current regime ?

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They all have their own agenda. Who knows. The endo thinks it's easier, remove the thyroid, treat the hypothyroidism, discharge patient - much simpler for the endo than monitoring a patient and adjusting Carbimazole if and when necessary.

I have as "female" problem. I saw a Gynae who was pushing for surgery. The surgery fails for 1 in 4 women and some women have it repeated multiple times, it is a major operation. The problem can possibly be helped by exercise. The Gynae couldn't understand why I asked to be referred to a Phsyiotherapist and declined the surgery! I saw the Physio and diligently do the exercises and am in a better place. Go figure!!!!!!

Just go with your gut feeling. If the GP is happy to continue the Carbimazole then I don't see any problem. Stick to your guns, refuse the surgery if that's what she wants, the endo can't force her.

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exactly my thoughts ...... if it aint broke why fix it .... its being treated competantly without any other needs and is under reasonable control , so why try to insist on surgery - which can and will have far reaching med changes and treatments which will only ''hopefully '' get the patient to where she is now --OR WORSE -- with no option for alternative meds or treatment ??

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Hi

I have Graves’, and although I still hope to achieve remission, I’m aware the odds aren’t great. Like your partner, my preference would be to hang onto my thyroid for as long as possible.

I’m very likely to push to stay on Carbimazole if it’s clear that my thyroid is reasonably stable, and is unlikely to go haywire if treated long-term with a low dose (2.5-5mg) of Carbimazole. Was your partner on 5mg during the period of both tests, and how long has she been on 5mg ?

That said, I’m not convinced that comparing taking one tablet of carbi a day v one of levo is entirely valid . From the convenience viewpoint, it’s generally the same, although on carbi your partner may continue to need more regular blood tests than on levo. If she has ever had problems with compliance, the doctors may feel she is less likely to come to serious harm if she forgets the odd dose of levo, than if she forgets the carbi. A bigger issue may be the relative seriousness of potential side effects., which are likely to be greater with carbi than levo.

From time to time, people pop up here who’ve had a thyroidectomy or RAI, and are happy with their decision. Unfortunately, it’s less likely that people who are entirely happy with their treatment will see the need to stick around on a forum like this, so it’s hard to tell what proportion they represent.

I would ask my endo to put some facts behind their opinion, for example, how many patients have they had who have opted to stay on carbi, and what were their outcomes? If your current endo won’t help with this, ask to see someone else - otherwise how can your partner make an informed decision ?

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exactly .... there is no problem with taking the meds [ i sort them out for her - as indeed i have on the various ''cocktails '' that she has had over the past 5 years ] --[ up to 43 various at one time ] ..... our gp does not have a problem with carrying out any full tests at any time , so meds can be adjusted to take into account actual results at any time --- not 6-8 months behind ..........so why is the endo trying to push for surgery ?

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Alangardner,

Nice to hear from you.

If your wife is comfortable on Carbimazole she can stay on it if she wants to and decline thyroidectomy or RAI. There's no need to come off it and have thyroidectomy which, as you rightly say, will make her hypothyroid requiring a different daily medication.

There is now evidence that Carbimazole can be taken long term. ncbi.nlm.nih.gov/pubmed/286...

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correction if i may ..... there is no evidence that carbimizole CANNOT be taken long term ........as my lady has had no adverse effects from the med regime that she has been on for so long now i cannot find any good reason to opt for thyroidectomy with all possible follow on possible ramifications ......thoughts please ?

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Alangardner,

'Twas a typo and I edited 'no' to 'now'.

I've already said I think your wife should opt to remain on Carbimazole if she is comfortable on it.

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exactly my own thoughts about this , in other words '''if it aint broke why try to fix it !!'''and then possibly bring on far more issues for no actual gain -- as far as i am aware . because no valid reason was given to us for the procedure apart from ceasing to having to take carbimazole -- only to be replaced by levo [only] , for life .

i could maybe understand this if long term use of carbim had been proved to be dangerous etc. , but to my knowledge this is not the case , and untill any other information comes to pass i will not be brow-beaten by anyone. thank you for your thoughts and input in this matter clutter extreemly useful as always .....alan x

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