Total thyoidectomy 30 years ago, still going..

[noNode]

Hello, so glad to find such a group. I am 33 years without my thyroid, which was removed because of malignant tumor. I've been really bad about taking my meds, whether synthetic or armour/np throid. Alhough I've been lucky not to have had obesity problems, now I am having issues emerging late in life that I wonder could be attributed to thyroid lack. I can't wait to connect with others having smilar experiences.

[LeiL]

What issues are you having. I had my thyroidectomy 14 years ago. I’ve been miserable.

[Hennerton in reply to LeiL]

Same here but mine was sixteen years ago. In spite of being given T3 on prescription, which I take with T4, I am still not the person I was before I had my thyroid removed. I live on a knife edge, always waiting for the next problem to arise health wise and basically “putting out bush fires” ever since I had it.

[Batty1 in reply to Hennerton]

I definitely can relate no thyroid and Im always waiting for my next health issue as they seem to come no matter what you do… no one can truly understand what its like living without a thyroid until they experience it first hand … life sucking nightmare!!

[Hennerton in reply to Batty1]

Yes, you are right that they come whatever we do. I take all the vitamins and minerals suggested on here and cook all my own very heathy food. I walk regularly in the country side and get good sleep. I shudder to think what my health would be like if I did not nurture myself, because all the good care is still not really enough to keep problems at bay.

[Carlax]

Hi All, Same here. I had total thyroidectomy 26 years ago and I have never been the same since. I have been quite good taking my T4. However, I have lived on edge since, struggling with sadness, anxiety, massive brain fog and fatigue, mild joint pains (neck mainly) both mental and physical. My results used to come back as normal, so nothing else was prescribed by GP other than anxiety pills. I learned to live with it thinking that it was me and maybe not thyroid related (even though it was too much of a coincidence that there was a before and after that particular event).Got worse 2 years ago and I know my anxiety and melancholy is not me, since despite having struggled all these years, I managed to have an ok life.

I decided to go to a private doctor since could not get any further with NHS specialist. He has prescribed T3 and my joint pains have disappeared and my edge has been reduced. I feel I may have found the solution, although I cannot be 100% sure yet since it is too early.

I just wanted to thank this site and everybody on it that has opened my eyes and help with ny quality of life. I feel really really grateful.

Now my next step is trying to find a doctor or a way to get my T3 more cheaply, since going private to my endo is super expensive but I am sure I will get there with everyone's help here.

[Carlax in reply to Carlax]

I forgot to say that on top of the T3 I started having multivitamins to ensure conversion was properly done. I had the tests to ensure I had no celiac etc absorption issues ... so I guess what I am saying is that it is not just about taking T3 but also ensuring it is taken at the right time, right dose and after ensuring that your vitamins levels etc are ok. Best of luck everyone

[pennyannie]

Hello NoNode and welcome to the forum :

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

In order for any thyroid hormone replacement to work well we need optimal levels of ferritin, folate, B12 and vitamin D and inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing can pull our overall heath and wellbeing further down that slippery slope.

Can you give us more details on how we can help you ?

I can sympathize as I have Graves Disease and had RAI thyroid ablation back in 2005 and becoming seriously, more unwell in around 2014 and wasted over 2 years going around various O/P departments and never getting any answers that actually made sense, but did find out I had a ferritin level of 22 and that was what started my own recovery out of the big hole I had fallen into.

I see you've tried various options of thyroid hormone replacement and they all need optimal vitamins and minerals in order to work well - so maybe this is a starting point for you and if our doctor isn't able to run a full thyroid panel to include a TSH, T3, T4, antibodies, ferritin, folate, B12 and vitamin D there are a list of private companies on the Thyroid UK website who can do this for you.

This is where we all need to start off and you will be talked through all the results and ranges if you choose to share the information with other forum members once with the blood test result.

Arrange an early as possible in the morning blood test draw, do not take your daily thyroid hormone replacement until after the blood test, and fast over night taking in just water.

If taking any supplements leave them all off for the week beforehand and then we can see more easily what your body is holding and working with.

Thyroid UK is the charity who support this forum and you can find all things ' thyroid ' on their website and you too can start to take back some control of your health and we are here to support you on that journey as we have all been there before you.

[SlowDragon Administrator]

I've been really bad about taking my meds, whether synthetic or armour/np throid.

Well any thyroid replacement hormones need taking everyday without fail

Forgetting doses leads to a whole bunch of issues …..low vitamins, messed up adrenals etc etc

Get a weekly pill dispenser

Set alarm on watch and take dose every day without fail minimum 6-8 weeks and then get FULL thyroid and vitamin testing done

[blondpalomino]

Hi noNode,I had my thyroid removed 24 years ago.

I have been on T3 for quite a lot of that time, I was lucky as in those days they didn't mind giving it to you, until the price went sky high. Now you have to jump through hoops to get it on the NHS.

Recently I had to go back on just thyroxine and make myself ill to prove to my Doctor that I really needed the T3.

I honestly think that anyone who has their thyroid out can never function the same, as a normal thyroid gives you 4 hormones, and you are lucky if you get given 2, and they are synthetic. Not many doctors will prescribe NDT, and I think it's very difficult to balance it anyway.

So we get used to just existing, keep trying different things like vitamins etc,in the hope of a miracle cure, never quite feeling right, and forget how we used to be.

[Hennerton]

I read your post with sadness, because it describes all that I have been through and exactly how I feel every day. Because I don’t want to become boring, I rarely talk about the daily struggle to anyone but a close friend and in any event most people have absolutely no idea what, or where, is their thyroid. They figure that I take medication - end of story but I am a hugely changed person to the one who was eventually diagnosed with Graves in 2005. We had just bought a house in France as a holiday home. I would not dream of contemplating anything like that now. I never fly, because I loathe airports. I feel almost panicky in crowded places. I used to have parties for many friends and a busy social life. Now I am happy to meet up with a good friend but I almost fear large gatherings. We have had three funerals to attend during the past few years and it was a relief to do them on Zoom.

I am fortunate to have an understanding husband but his life is ruined too. I wonder when the true damage to health and personality will be revealed.

[Brightness14]

it's very hard without a thyroid. Mine was removed for the same reasons as yours, but only 6 years ago. At that time I was 68 years old and my thyroid was working perfectly, I swam, did Yoga and walked was never overweight and had a good healthy life, until the dreaded lump appeared all of a sudden.I was put on Levo which made me ill and useless and then I joined this wonderful site. I read about things to do with medications and put myself on Thyroid s which I still take today.

The ratio of a pigs thyroid is much higher than a humans, but I manage very well. I have never been the same though as a good functioning thyroid will be working all the day to adjust just the right amount needed for any particular task. Taking medication just twice throughout the day will never be the same, it can't be. We all do the best we can, sometimes

it's hard.