Living with no Thyroid since 2006.

[CMBR68]

Hi there

I am new to the site and was hoping to find like people who have undergone a full or partial Thyroidectomy and how they are getting on with life.

Not looking for a moan, I guess I'm looking for people to sound off and for advice.

After being diagnosed with Thyroid cancer, I underwent 2 operations and I suppose I stuck my head a little in the sand (a little) trusting those around me (doctors) for help and advice when I needed it.

Now ten years on and ranging from a daily dose of Levothyroxine of between 150mcgs to 250mcgs, at times I feel like I'm spinning round chasing my tail so to speak, as I deal with side effects from the drugs and the condition. My levels each year are always ok and the doctors dont see why I have any problems............ Tiredness, dry skin, weight gain (lots), bloated stomach, bowel pains and diarrhea (every day), food intolerances, joint pains (especially in my knees, hips and wrists), headaches behind my eyes, swollen wrists and brittle hair................ Im undergoing tests for intolerances etc and feel ridiculous that Ive put up with these conditions for so long. I dont want this to dictate my quality of life and have always smiled through and got on with it.

[Panda_26]

Aah , really understand , and know that you've come to the right place !

I too lost my thyroid to cancer in 2003 and 2 operations later put all my trust in the doctors caring for me .

That worked out ok for a while but about 8 or 10 years later I started to realise I wasn't 'fine ' like all the blood tests and doctors said .

I had and still have multiple symptoms and was not getting any answers until I found this forum

The first thing everyone will say is get some up to date thyroid blood tests and post them here for advice .

I now have switched to NDT and after years of thyroxine only am finally beginning to see the light !

it's a long slog though and I've still got a way to go to get the vibrant health back I can barely remember but I finally feel I'm finding the answers , hopefully you will do too !

Good luck X

[Clutter]

CMBR68,

Thyroidless patients can struggle to convert sufficient T3 from Levothyroxine and may need the addition of Liothyronine (T3). Please post your most recent thyroid results and ranges and members will advise whether you are optimally medicated. Hypothyroid patients often have low or deficient ferritin, vitamin D, B12 and folate which causes musculoskeleetal pain, fatigue and low mood so ask your GP to test and post the results and ranges in a new question.

[coppeen]

Hi,

I had thyroidectomy in 1997 and like you carried on for years with one complaint or another, but was told I had no options but to take Levo to prevent the cancer from returning. I did find that when I took a different brand, on 3 occasions, I became breathless, heart racing and actually passed out on one occasion. So I stuck to my brand but over recent years have had to reduce the amount as I was getting a racing heart and also numbness and painful tingling in my feet and legs. Betablockers slowed my heart but didn't stop the pounding which kept me awake and made me feel anxious all the time. They also made me groggy so I stopped them. Now on 75 and the Drs would like me to take more but even the slightest bit more and my symptoms return in a couple of days, so I know it is caused by the increased dose. I now feel well in myself, though my energy does seem to run out suddenly, like a flat battery, if I do a lot, but that may be my age, (69). However I have a lot of pain in my legs and feet recently partly arthritis, partly plantar fasciitis I think, but might be connected as it seems a common complaint. So I am trying to get hold of NDT to give that a try and see if I feel better, as after all these years I suspect that synthetic T4 alone may have caused problems.

Drs are unwilling to do many frequent tests, and it hard even to get an appointment now. Anyway the results seem to fluctuate oddly and no-one seems sure what to make of them, and I feel that anything is better than the pounding heart symptoms so I won't take a higher dose.

[faith63 in reply to coppeen]

i would cut out all grains and dairy for 30 days and see if the pain subsides.. google grain and pain and also, 30 day autoimmune paleo reste diet..i am doing this now. i have terrible muscle issues and swelling all over.

[Hidden]

Hi and welcome to this site which helped me on the road to recovery..I had my thyroid removed (two ops) in 2004...due to cancer..put on levothyroxine of-course..up until about 2 years ago was ok though never really felt brilliant but just put it down to not having my thyroid...got on with life when wallop i entered a hellish period....for whatever reason t4 failed to work for me..no help from the medical profession...long story..

So now after a lot of research and desperate to feel better I turned to natural dessicated thyroid (NDT) I self medicate with my oncologist's, endocrinologist's and doctors knowledge...it was very hard for me to get the right dosage..am now much improved.

I had to change my job due to being so ill meaning a reduction of income but I didn't have much choice...most days I went to work feeling very tired and ill...only recently things are improving for me.

I wish you well in your search for better health...you will find lots of help and support here...don't be afraid to ask for help...this site was invaluable for me.

[faith63]

with cancers, you have autoimmune issues and this would come from leaky gut and food intolerances. Look into to functional medicine..Dr. Mark Hyman, "how to sto attacking yourself"..start there for info on healing naturally.

[faith63 in reply to faith63]

yes..try ndt and see if that helps. I am sorry that you lost your thyroid.

[CMBR68]

Hi there, not been here for a couple of weeks, had lots of tests done, just awaiting the results which ill post here and hopefully get some good advice from people who actually understand xx