thyroid gone

[Glen202]

Just had my thyroid removed, it nearly strangled me to death through swelling due to nodules, I can now breathe a lot easier but getting used to the meds will take time, it was huge, took three hours for the surgeons to extricate it.

[Hidden]

Hi Glen

Wow that was huge, I hope that your now on the road to recovery and get all the help on this wonderful site.

[Glen202 in reply to Hidden]

Thanks, Bunny, it's nice to know there are folks out there with similar thyroid issues, I will be seeking advice and updates from this site, I went undiagnosed for many years but now I have a new lease on life as my recovery is going quite well cheers.

[Hidden]

I had the same twice! Partial op for benign goitre in 1989, then total removal followed by RAI for multinodular goitre in 2005.

I did not get any medication after partial and it took 3-4 months for remainder of thyroid to start working again. After the total op I felt absolutely wonderful from the day after the op for a couple of weeks or so and then had to start on levo. A few months after the RAI and taking 150mcgs of levo started feeling rotten but I followed their instructions for years whilst gradually feeling worse and worse. Eventually gave up the docs and started taking NDT and recovered my health to a significant degree. Now I refuse to ever take levo even if they paid me to do so.

The total op was significant for me as well. Don't know how long it took them but the surgeon told me the following day that it was by far and away the most difficult op he had done in over 13 years of thyroid surgery.

It seems certain that for those of us without any thyoid, levo is simply the wrong medicine and will never make us well, irrespective of how much of the stuff we take. NDT or combined T3/T4 is a necessity for us.

You may be offered RAI to kill off any remaining parts of the thyroid that the surgeon was unable to remove. Depending on the reason for the op you may have the option of having this treatment or no. If you take it, what mat be left of your thyroid is completely dead, as dead as the Monty Python parrot. If you don't have it then there may be the possibility of it coming back to life and granting you some more years of proper life and health.

You are never likely to get any NHS NDT and most unlikely to get ant T3/Liothyronine, so you have to source this yourself from abroad. After RAI you must get some, without RAI there is a possibility that you may not need to buy any for yourself for some time. You need to gen yourself up on these options to discuss with the consultant if you are offered RAI treatment. The choice is yours to make. If I had known then what I know now, I would have refused the RAI.

You may like to read the instructions under which the radiologists work as it states there that they must tell you all different possibilities of having/not having treatment:

rcr.ac.uk/system/files/publ...

Also this document relating to GP's from the GMC:

gmc-uk.org/Consent___Englis...

I hope this info will help you as it will certainly give you many subjects to discuss with the so-called "professionals".

[Teddy71 in reply to Hidden]

I don't agree that Levo is wrong for people without a Thyroid and will never make us well, as I am the 3rd member of my family to have had a total Thyroidectomy and we are all on Levo and none of us have any problems with it, it varies from person to person.

[Hidden in reply to Teddy71]

I notice from previous posts that yours was removed only last February.

If you are still OK after another year then you are very fortunate indeed and I am very envious of you.

It would be interesting to know whether you had RAI after your operation. If not, then the remnants of yours could be still working and producing sufficient natural hormones to satisfy your needs, as mine may have so been able if I had not opted for RAI.

I agree that every person's needs may be different, but the existence of a Facebook community especially devoted to those without a thyroid does indicate something.

[Teddy71 in reply to Hidden]

No I didn't have RAI as all of mine was removed, my dads was removed over a year ago and he is fine on Levo and my sisters was removed 10 years ago and she also on Levo and never had any problems and this Facebook community is for everyone with thyroid problems not just for people without thyroids.

[Glen202 in reply to Teddy71]

Great, just had mine out, a breath of new air so to speak.

[Hidden in reply to Glen202]

Hi Glen

I had mine removed in Oct 2015. The goiter had caused my trachea to move and was growing down instead of outwards. It was difficult to breath.

After I was put on Levo but after 6/7 months I was feeling so bad that I joined this site and then self medicated with NDT. I am now much improved but not the same as before the op. Still working out the meds.

[Glen202 in reply to Hidden]

Hi, Bunny, I have just started on Thyroxin since having my thyroid completely removed, there is a trouble spot such as a sore, stiff neck and sore back of the head, after reading up on this symptom I have discovered that the cause could be the body taking time to adjust to the thyroxin as the thyroxin takes that much time to fully integrate into all parts of the body, here's hoping for positive results.

[Hidden in reply to Glen202]

HI Glen, you will have to wait and see. I was patient and waited for 6/7 months but was getting worse. I agree that it is a great shock to the body when the thyroid is removed.

I hope that you get the positive result that you want.

[Hidden in reply to Teddy71]

Sort of proves my point then. Mine was also completely removed as well and, as so often happens, the surgeon was unable to remove some bits for fear of doing irreparable harm to other tissues nearby. I had no wish to endure a repetition of the same surgery for a 4th time, so unwisely opted for RAI. If you did not have RAI then you are also very likely to have some residual tissues which are most fortunately for you producing some normal, natural hormones. Ergo you feel well and I need NDT.

The Facebook group is here. No idea which one you are talking about:

facebook.com/groups/FTPOWit...

[bantam12 in reply to Hidden]

Please don't say " levo is simply the wrong medicine and will never make us well" as it's simply not true, there are many many people who are minus a thyroid but do very well on it.

[Clutter]

Glen202,

Wait until you have dental treatment. Being able to breathe and not choking when a drop of water goes down your throat makes it so much easier and quicker.

[Glen202 in reply to Clutter]

Thanks, have had that problem in the past.