To Have or Not to Have a Thyroid Gland ..that is the question

[ThyroidHell]

After reading these posts for about 2 months now I wonder how many people would like to have their Thyroid totally removed and starting as a blank canvas? I don't have thyroid glands anymore and just been on Levo since 25/6 .. so all in all do people generally think that its easier to treat from the scratch or just plod on with dysfunctional thyroids? Interesting to know how many would opt for surgery to get rid of it for once and for all.

[TTLady]

Mines gone - good riddance

[ThyroidHell in reply to TTLady]

Same here :o)

[hooper]

Would rather keep it and battle on.

[Stourie]

I think I would like to keep mine at the moment, but am feeling not too bad just now.

Jo xx

[AshbyTwin2]

Mines went in November and I feel sooooo much better. No palpatations, no hot sweats, sleep better etc etc.

However the down side is they start you on high doses of Levo (175 mcg) and then reduce it which made me feel lethargic, itchy, hair falling out, bloated.

Both have advantages and disadvantages x

[ThyroidHell in reply to AshbyTwin2]

See I thought as a blank canvas it has no inteference from over/low active thyroids just the medication and if you get that spot on you'd be smiling all the way to the bank so to speak lol . Just have to wait and see , I certainly am glad its gone to the bin!

[AshbyTwin2]

It still takes time to get the medication spot on. My T4 was running at 48.8 so most of my life I have been doing things at light speed. Now the med's are being reduced I'm frustrated at not being able to be super woman/mum as I'm too tired all the time.

Everyone is different so there isn't a certain amount of Levo everyone can take.

I'm sure in the long run it'll work out x

[Hidden]

I've been hyper- and hypo- thyroid. Whichever way you are you need meds, because the thyroid is such an influential gland you have to mimic its correct function somehow. I'm not convinced taking away all vestiges of natural thyroid function is something that should be considered as a normal way of treating thyroids which are out of whack. For one thing, to remove it means that people with sharp knives are messing around in there very close to one's vocal chords. I'm a singer: I don't want that.

But I hear what you two are saying. Do you know why you were considered candidates for the operation, rather than radioactive iodine or longterm meds?

Do report back on how it goes. It's the one alternative to levothyoxine I suspect it might be possible to lobby one's doctor successfully for.

Pity it's so difficult to keep track of a blog or question (so many postings).

[ThyroidHell in reply to Hidden]

Hi Humphrey

I had right thyroid removed 1983 due to a nodule of a size of an egg. I functioned fine till last year I recognised the symptoms again (strangular, irritation in the throat and tablets got stuck etc. ) I have never been to any medication either so I went for the ultrasound and found out I had 7 nodulars there and the biggest was 3 cm. I had the needle test and all were benign.

I defenately wasn't goint to put up with these feelings as the growths were this time growing inwards and surgeon told me they were never going to go away and are likely to multiply and grow bigger.

I am also having a sleep study in 3 weeks time for sleep apnea but I have actually stopped snoring since the operation ( 24/6 ) husband confirmed this joyfully ( poor man ) I will have the study though just to see it myself. So all in all I didn't really have any other choice.

Marja

[Hidden in reply to Hidden]

Managed to keep track of this very interesting discussion :o). Sounds as if the medicos know when yer thyroid HAS to come out. So I shall, doubtless, soldier on.

Intrigued by your Finnish experience. In this country there was (correct me, folks, if I've got the wrong county) a condition known as 'Derbyshire neck' which was an untreated thyroid goitre. Very common. Something in the ground almost certainly. Now, one presumes, largely eradicated.

[vajra]

Hi TH. I've seen quite a few on the ThyCa site report doing much better with their replacement after a thyroidectomy as it eliminates a complicating factor when determining correct replacement, and reputedly a focus for auto immune disease.

Especially it seems compared to situations where there is auto immune disease (the antibodies can mess with conversion and/or use of hormone?), or it's been zapped with RAI.

I lost mine due to a cancer, and since previously I'd for many years been unable to get diagnosed as hypothyroid (the classic stock blood tests/compromised conversion = your thyroid is 'normal' scenario) despite severe symptoms it was a major turning point.

Suddenly the system was falling over itself to prescribe hormone to suppress my TSH. (never mind that it's long since forgotten about it) It eventually proved possible to get prescribed the T3 which transformed my situation for the better, but only after suffering through after a few months of even more severe hypothyroidism. (removal takes the T3 it produces directly out of the situation, and may make hypothyroidism caused by poor conversion more marked in quite a few - especially if the result of the hypo is that the gut is not in good shape)

On the negative side I'm despite years of 'tweaking' still not quite 100% (my stamina is not what it could be), and suspect that simple replacement with synthetic hormone may just leave a person short of some of the additional compunds reputedly produced in smaller quantities by the thyroid. Some prefer natural hormone for this reason - I'm hoping to trial it soon.

Also on the negative side it's s bit sobering to stop and think that I'm dependent on a continuing supply of hormone for well being and survival. Given the blase manner in which the various parties have blamed each other and pronounced 'we won't have any for a few weeks, you'll have to go somewhere else' when there have been supply problems, I hate to think what would happen if there was a real supply issue as in case of a war or something.

Whatever the pros and cons, it seems likely that removal/non removal may normally be a fairly academic debate anyway. In that clearly defined professional guidelines are applied by doctors in making the decision to remove anybody's thyroid - for fear of liability among other reasons.

From what I've seen it needs to be in one hell of a mess e.g. with nodules, cellular changes/enlargement caused by Hashimotos or a cancer before a surgeon will remove it. That the patient is displaying severely hypothyroid symptoms doesn't seem to count for much.

There's possibly a zone in the middle of it all where patient influence may one way or another count for something, but I've no idea for example what would happen if a person was to arrive at a hospital and demand removal of a fairly healthy thyroid regardless of guidelines.

Which begs more than a few questions about how the system is set up too.....

ian

[ThyroidHell in reply to vajra]

Thanks for the indepth reply. If you see my reply for Humphrey you'll see my story. I am also a bit concerned for the ' what if there is NO Thyroid medication in the world' situation because now I am totally in the mercy of pills which I can't make myself but maybe I'll start keeping pigs <wink> ..sorry joking now, sometimes its good to have a laugh. I have noticed though by reading these blogs that people go abroad and get thyroid medications over the counter ! I would find this a bit scary and risky. I am an old school and only take whats been told by the doctors

[vajra in reply to ThyroidHell]

You got it TH - a bit worrying. Pardon my grandstanding, it's in the hope of communicating that there's different ways of looking at this stuff.....

ian

[vajra]

Just a long PS prompted by Humphrey's very important point.

None of this amounts to advice, or to a recommendation to step outside of mainsream medicine. Surgery however cures nothing, and judging by my own experience of several there's always negative consequences. It'd be a pity to create the sense that its with replacement the only option for everybody.

It's a tragedy to see removed a thyroid that could be restored to health by e.g. holistic treatments. (4Rs - healthy diet, supplements, use of healing, elimination of problematic foodstuffs causing reactions etc)

It's in a similar manner less than desirable to see hormone replacement started when in fact the real problem may be rooted in disturbed gut function/poor absorbtion of minerals/gut inflammation which may well respond to treatment too much as above - the risk is that the thyroid might atrophy, and the patient longer term lose the ability to produce enough hormone.

What's very unclear is how to recognise when a situation is getting past the point where treatment of this sort might be effective.

There seems to be relatively little treatment of this sort done, certainly by the medical profession. Patients mostly want the silver bullet too, the instant cure. Many of the holistic practitioners working in this area don't seem to have access to blood testing and/or hormone - the latter it seems can still be helpful in restoring proper gut function and the like.

I ended up having a thyroidectomy in 2005, but equally know that it was holistic treatment of this sort that kept me going from the mid 1990s. i.e. it didn't stop the degradation of my thyroid which likely had been ongoing since the late 80s, but it did keep me functioning at some level. Not to mention it likely moderated the auto immune disturbances which judging by ANA titres and the like came close to developing into full blown disease. (lupus)

I was too late to save my thyroid, and clearly it's not always possible (there are sceanrios where surgery and more aggressive treatments may be required) - but there are persistent stories coming through now of people curing Hashimotos and the like by these sorts of means: thyroidu.com/127/my-hashimo... thyroiddietcoach.com/about-... amazon.com/How-Reversed-Has...

Even if we head off down the replacement and/or surgery route it seems rational that elimination of the original cause of the loss of health (likely stuff like stressful lifestyle, lack of exercise, bad diet and so on) has got to be an important step in its restoration. As in (if we can identify the issues) we can't expect to offset them by popping pills/cutting bits out.

It's another example of the scenario where the time lost while the system (as a result of the uncertainties of the T4/TSH blood test - many years in my own case) keeps on telling people that their thyroid is normal may be critical.

The key seems to be to catch these issues/imbalances very early before the damamge has progressed to the point where it becomes much harder to reverse.

My own daughter started to show symptoms of this sort in her late teens, and was heading down the same road with doctors - 'no, your thyroid is normal'. Fortunately she was able to accept input from my experience, and started working with a holistic practitioner now retired (this gentleman to whom we are very grateful: amazon.com/Hard-Stomach-Sol... ) and is by now in her late 20s seemingly 100%.

More to the point she's aware of her body, knows what foods etc cause problems, has developing the habit of healthy living, and knows what to do if it's getting out of whack.

It's hard work and takes commitment, and recognising what's wrong and getting started early are both important - but (while there's clearly no guarantees) there do seem in at least some cases to be very real alternatives to surgery and replacement.

i.e. methods that entail eliminating many of the chronic dietary, lifestyle and environmental stresses we suffer these days.....

ian

[ThyroidHell in reply to vajra]

All makes sense. I am actually from Finland originally and this is what I think ...I come from a little hamlet and as long as I remember people around me had thyroid deseases.

My best friends mum and her grandma has hugely bulging eyes and thick necks. My other friend had the same thing and my second cousin too minus the bulging eyes. As we didn't live in a town our water came from individual deep drilled wells, like my brothers blot of land, they drilled 150m till they hit the underground stream through rocks ..expensive stuff but thats how its done if you live in the countryside far enough from the town water supply.

And I think the water has something to do with thyroid conditions.

[nightingale-56]

No choice really as it all went wrong while pregnant, but I'm glad they left me with a little asI'm sure the little bit of T3 it produces helped to begin with. Janet.

[ThyroidHell in reply to nightingale-56]

Oh well little bit helps a lot :o)

[vajra]

Re your water. Shortage of iodine and other key minerals in soils/water is the the classic cause of thyroid trouble i guess TH.

On the little bit - it's amazing just how many little balancing and compensating mechanisms the body has. How given half a chance it is self restoring....

ian

[DaveMH66]

Well easy desicion for me total straight away, nodular goitre of whole thyroid, and that was now quite a while ago (over 6 years) back doing excersise and have been stable for long time, wouldn't want to go back to having a huge lump in my throat and issues with breathing while doing any excersice or ill.

Taking tablets is just a routine now but I am doing things I hadn't done for years.

[ThyroidHell in reply to DaveMH66]

Glad to hear there is light end of the tunnel !!!

The lump is a big issue always felt like someone had hands around my neck , it could drive a sane person mad. I am keeping quiet though ... I got badly bruised vocal cords ... maybe the silence is golden to my family for a change lol

[Silver_Fairy]

Im gonna keep mine for now Even if I have mine whipped out I will still have Graves disease!

[ThyroidHell]

Silver -Fairy thats ok , I would have also if mine was a normalish size

All the best :o)

[maggykriti]

The thyroid gland produces several thyroid hormones and essential calcitonin etc. Why would it be better to have a failing thyroid removed if it can still produce something your body needs. Thyroid replacement therapy is so often just T4 which cannot do the work of a thyroid gland. I am fortunate that 11 years after a total thyroidectomy I get natural dessicated thyroid on the NHS. This can replace all the missing hormones. However, it is still hard to get a balance with any replacement and harder to convince some GP's to be flexible about blood test results and look at the patients well-being as a indicator of effective therapy. I would not choose to have my thyroid removed now. I would rather support failing thyroid function than replace it entirely.

[ThyroidHell]

If mine was a 'normal' size and not pressing against my windpipe and throat so bad I would have kept it but because I had 7 growths and the biggest was the size of an egg and stopped me breathing during the night I didn't have a choice and the surgeon told me they won't go away and are likely to get bigger.

[marram]

Mine has gone because it was so overactive I went into Thyroid Storm, not a pleasant experience as I was having hallucinations and my pulse rate was over 180. I did not have much say in the matter because of the urgent situation.

If I had had a choice, I would have preferred to keep my thyroid - but it would likely have been a bad decision anyway, because it was the second time, the first time I had a sub-total thyroidectomy at age 18 and less than 20 years later the rest was removed.

I had Graves' (probably still do) and nothing would stop my thyroid re-growing except a total thyroidectomy. For most of the time since then I was reasonably well on thyroxine with very few ill effects except muscle pain which I put up with being a bit of a stoic.

Things are much better now. I am sure it was the right thing to do because my illness was so severe, I could not function normally, I had agoraphobia and was unable to work or even go outside to hang washing out.

For me, Not to Have was the right thing.

Marie XX

[ThyroidHell in reply to marram]

Sounds horrific experience .. I actually had my right lobe removed 30 years ago. Apparently the left gave enough thyroid to be without medication and all was so till 24/6 when the left came out.