Decision about thyroidectomy - should it stay or should it go?

[JenniferJellyFish]

Hi all,

I have a decision to make about whether or not to go ahead with a thyroidectomy, and I would really appreciate any views from the forum (while recognising that this is totally my decision!). Sorry, this is a bit of a long post.

At age 28 I had a left-side thyroidectomy (not requiring thyroxine). Now, 16 years later, I have a right-side goitre with symptoms of throat constriction, some difficulty swallowing, and so on - unpleasant, but I can live with it for now. I realise that if I go ahead with surgery I'll have to take thyroxine from that point - and it's this, rather than surgery, that frightens me.

I've been told that, given my history and that of my family (my mother is hypo, along with others on her side), it's almost inevitable that I'll have to take thyroxine at some point in the future.

So, my dilemma is: do I go ahead with surgery now and get my levels sorted by the endo, or do I wait until I feel really unwell and try to get a diagnosis with my GP later on (which, admittedly fills me with dread), and face surgery too.

I'm fortunate as I have access to private healthcare at the moment, and the consultant is excellent - he's supporting me in taking time to make the right decision. He's also been reassuring about working together to get the right level of thyroxine if I go ahead. My GP, however, is as much use as a chocolate teapot, and to be frank, I'd rather stick pins in my eyes than speak to him!

I'm sure there are members who have faced this decision already, and I'd love to learn from your experience. Many thanks for taking the trouble to read my post.

Jennifer

[elayneg]

Hi

I have decided not to have the thyroidectomy but this is my choice it just seems so final to me and want to try other things before I make that decision.

I am glad you have a good Endo mines has no patience because I won't have the op. My new GP has been so helpful and given me lots of info. The Endo is not interested in symptoms and just ignores how I feel.

The decision is yours to make. Good luck and I hope which ever way you choose to go. To be quite honest other than being tired and putting on weight I was always healthy until by chance they diagnosed me Hyperactive. This is my second bout and it is only when I take the medication I feel ill. I am too much of a coward to stop it completely.

I know this doesn't help you, what I would say though is once you are at the correct level of thyroxine you will be back with your doctor for your blood tests and have to rely on him for any problems you might have. If you decide to have the operation perhaps you need to change your GP to one you can trust.

Good luck

[Mumtoboy]

Hiya. I had a total thyroidectomy in february after 9 years of living with a multi nodular goitre. You are right in not rushing your decision. For me, it was a good decision, although I have no regrets about waiting so long.i can now breathe and swallow much better, the ugly lump on my neck has gone and I no longer feel constriction on my neck.

Make sure you have a full thyroid profile before the op if you decide to go for it- that way you know what you need your levels to be afterwards. This only works if you feel well now though!

I can honestly say I feel almost normal, about 90 percent of how I was before. Luckily levothyroxine seems to suit me. My gp is great- I'm still tweaking my dose and waiting for t3 blood test results.

It does take a while to get the dose right and there are unlucky people who don't do well on thyroxine. I guess you know about the operation and recovery, having had one side done already.

Hope this is useful and good luck in making your decision.

[Jackie]

Hi Not sure if you have seen the surgeon yet. When/if you do they will thoroughly discuss it. Even then you do not have to decide. Now a days, surgeons will only operate if the outcome is going to be good. I know, I need lots of life saving surgery and none will touch me!

The way up the pros and cons, a list, then decide.

best wishes,

jackie

[sandywandy1 in reply to Jackie]

I wish you all the best with your decision.

I went for thyroidectomy as couldn't get overactive (Graves) thyroid under control with bad reactions to all anti-thyroid meds (lost most of my hair, supressed immune etc). My father had swallow problems , I know it can be tough.

For me the surgery itself was less painful and easier to heal than I imagined.

Since the thyroidectomy it has taken me about a year to get my replacement meds to 'optimum'. (I have started to lose some weight, am working full time, but always behind on everything else!) I haven't tried natural yet, partly because I am pleased to get this far and partly as there seem to be so many hoops to jump through.

Post op - I felt like rubbish with numerous hypo symptoms. I wasn't converting T4 properly.

Eventually after about 6 months the addition of T3 made a substantial difference to my wellbeing although took another 6 months to get to treble the dose, which seems right for me.

Despite this I find I am significantly less motivated than previously (I used to be 'superwoman', but now feel like I can't be bothered to do anything, so a bit like a personality change) and have energy dips.

'Fighting' to get properly medicated, supply problems, potency problems.' have made it more of an uphill struggle than it should be. Endo has discharged me as I am now 'mid range' on T3, GP supportive, but has never heard of natural thyroid etc.

Sometimes I wish I had left it in. Having said that I generally feel in better health than before. (No more skeletal face (a fat one now!), twitching, dread, weird angry, tearful emotions and other horrible stuff)

Of course your situation and your body are different to mine. Lots of people on this site have found what works for them. I don't want to put you off, but just to point out it can be a bit of a journey to get to the right place.

Well done for finding this site. There is a wealth of information and support. I think if I had joined sooner, I would have been better supported and informed, and perhaps recovered quicker. Jackie's suggestion of pros and cons sounds like a good one.

Good luck

Sandra

[Jackie in reply to sandywandy1]

Hi Sandra, If you were me, I would find another Endo, do all the research first. You should be well, if the dose is right, bloods an how you feel.I need my T4 it top third of range and FT3 right near the top ( but must not go over) if that is any help.What ever treatment in the past, it should now be treated properly like every ones should be.. Also make sure you have had all the related autoimmune and hormonal tests done. If not sure, Endo should have done them.Phone Endo sec for a print out + ranges of all tests they did. Most of mine send them automatically, if not I tell them!! Do not accept if n ot well, get the right treatment from the right En do, lots of research!

Best wishes,

Jackie

[Zabby]

You could look into taking iodine. The iodine yahoo group is the best place to start as they recommend a protocol with other supplements, such as selenium, that it's best to take at the same time. I don't know much about your particular problem but I definitely think it would be worth asking your question on their forum. Good luck!