Hello everyone, I am very new to forums in general and I would appreciate any advice.
In about a months time, I'm having my thyroid completely removed. This is due to chronic thyroiditis. The thyroiditis episodes happen roughly every four months and with each episode, the swelling would get so bad I would struggle to breathe and swallow and end up in A&E.
I am currently on 100mcg of Levothyroxine as these episodes left me with hypothyroidism.
The endo recommended I get it totally removed as:
1. I was taking steroids each time and it wasn't a sustainable way of dealing with the inflammation.
2. I am quite young (23) and they think this will eventually kill my thyroid and it would be best to handle it now.
3. I now have a permanent goitre which has affected my voice, that may be scar tissue from all these episodes.
So after researching, it's been a bit scary and stressful reading how people react to this surgery and levels and so on. My main questions would be:
How easy is it to regulate thyroid levels after a thyroidectomy?
Is it worth not removing it and seeing how it progresses?
Do you actually never feel the same after it?
What helped anyone with recovery?
Any other helpful advice?
Thank you for reading and your time!
Written by
LTP1234
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I am very sorry you have developed a dysfunctional thyroid gland at such a young age and - first of all - I hope your surgery goes fine and that you recover quickly from your operation.
Members who have had your condition will respond with uplifting advice.
I have my thyroid gland but cannot improve on Levothyroxine - also known as T4.
However, many people worldwide do improve their health on levothyroxine (T4) alone and they have to have gradual increases until symptoms resolve.
If their heartbeat goes too fast, they'd have to reduce dose slightly. Everything is done slowly, i.e. gradual increases or decreases till you find a dose that suits you.
I recovered my health and relieved all symptoms on T3 (liothyronine) alone, I followed Dr John Lowe who was a doctor/researcher/scientist and an Adviser to Thyroiduk but he had an accident that caused his demise and he is badly missed.
Many people split their dose but I don't as I follow Dr Lowe's advice of a once-daily dose as it also makes life more normal. He stated that all of our T3 receptor cells were saturated with one daily dose and it then sent out 'waves' throughout the day.
He was also a scientist/researcher/doctor/expert on the use of T3. He was given many awards. He stated that one daily dose saturated all of our T3 receptor cells and they then sent out 'waves' throughout the following days.
Dr John Lowe had a bad fall that caused his early demise but it was important to him that people didn't have unecessary symptoms and have a normal life.
There are two thyroid hormones - one is levothyroxine (T4) and inactive and is supposed to convert to T3. The other is Liothyronine (T3) and is active T3.
Many recover their health on T4 but I couldn't but am symptom-free on T3.
Request, at your next blood test for B12, Vit D, iron, ferritin and folate to be checked.
Is it still possible for you to look into finding out what causes the thyroiditis and then try to calm everything down so that you do not need a thyroidectomy? Doctors and endocrinologists are very quick to suggest removing it but less keen to deal with the fall out of having no thyroid
. I wish I could be positive but my experience is that I have changed considerably since mine was removed. I feel it has knocked my confidence and desire to do and try new experiences. I am probably half the person I was but nevertheless I have managed to get the addition of Liothyronine, which is not given automatically and this has helped considerably. My advice is definitely to try hard to overcome the thyroiditis before agreeing to a drastic thyroidectomy. Read as much as you can about what causes thyroiditis and also find out what will be given to you as medication after the operation, if you agree to it. If it is just Levothyroxine, say that you definitely wish to have the addition of Liothyronine agreed before you have the operation. But if you can possibly avoid it altogether that will definitely be better.
NO!! JUST NO! Exhaust all options, surgery is the last resort. Please consult a Dr. Who practices functional medicine. Maybe even add some homeopathy. Find the root cause, do whatever you can and listen to the holistic practitioners for the changes they ask you to make. MANY DONT FEEL NORMAL AFTER REMOVAL
Be cautious, surgery is (obviously) irreversible and the thyroid affects every single cell in the body.
I have found it hard to get good care on the NHS. The scales have dropped from my eyes about the medical profession, **YOU** need to take control of YOUR health, medics are overworked and bound by tradition, protocols, "professional" bodies.
My wife struggles to swallow, though not episodic or perhaps as bad. She is finally on Levothyroxine.
I had my over active thyroid zapped many moons ago and haven't really been the same since. Maybe it was the right/only option but I wish I'd done my research thoroughly beforehand as I might have tried a few other things first.
Good luck, surgery might end up being the correct option, but please do your research and fight for necessary tests, or pay for them yourself if you can afford it.
I had my thyroid removed six months ago after struggling with an overactive thyroids for six years. For me it has been the best decision I could make. It was a last resort but while I was determined to try anything and everything to get better over the six years, nothing worked and life was really tough. Since it has been removed I have never felt so good.
After the surgery your doctor will monitor your thyroid levels. I had a slight dip but we put the levo dose up and I’m fine. It’s really scary to face this decision and I delayed it for years, gathering opinions on here you will hear the good and the bad but please remember your situation is unique to you.
Please feel free to reach out directly if you have any questions.
I was pleased to hear your positive reply.I have been struggling to manage graves disease since 2018 and am booked to have a thyroidectomy on 14th June.I feel I have given everything a good go and I have taken this step after alot of research and soul searching.I'm going into this hoping for the best and your post has lifted my spirits alot.Hope you continue to feel well.
I’m so glad it has helped somewhat. Overactive symptoms are not pleasant and when you are trying to battle against a very diseased thyroid the medication sometimes doesn’t work. Thankfully I haven’t had any issues with levothyroxine and it’s been a very positive experience.
There was an element of recovery from the surgery which takes time but be easy on yourself and you’ll get there. It was a couple of months until I was fully back on my feet - but it just doesn’t compare to being a sweaty shaky mess with heart palpitations and all the other symptoms thrown in!
Thankyou for the advice.I am prepared to take it easy and for it possibly to take 2 or 3 months to recover and get my levels right.As long as I'm OK for my daughter's wedding in December I'll be happy.Best wishes to you.
Thank you for posting. I have just had a TT to remove large goitre having spent two decades trying to manage T3 toxicosis. I am now on Levo. I realise it is going to take time to adjust to switching from Carbimazole to Levo and allowing the body to heal and recover from the surgery. The surgery was on 25th May. Do you split your Levo dose or take all at once first thing in the morning. I am feeling pretty queasy first thing - probably result of anaesthetic still. I know - be patient. And hoarse voice too. Just trying to begin a ‘new’ thyroid life!
Please be aware that six months is nothing. Your body is still fit and coping without its thyroid. I felt fine for many years until I registered that all the odd illnesses and health problems, aching joints, poor sleep pattern, freezing but burning feet and much more were somehow connected with the loss of my thyroid. Actually it was a client whom I had known for years who looked at me and commented that I should do something positive. She mentioned T3, which no doctor had told me about, in spite of my constant visits with health problems. It was like opening my eyes and seeing a new world. I managed to get T3 by seeing a private endocrinologist and have never looked back. My GP now pays for it. So be sure to insist on T3 to be prescribed with your T4 if you begin to notice a health dip in the future. I assume you have read the other posts here, so you can see I am not alone in this view.
I would recommend you pay out of pocket for a complete thyroid panel so you have something to compare with after your thyroid is removed. I didn’t do this and I regret it.
I agree with the other members that surgery should be a last resort and a second opinion would be a massive help with a decision like this.
I'm in Australia and although not the same situation as yours, I visited and Endo as I woke up to a 'lump' in my throat. It ended up being Goitres and bleeding which would come and go frequently on my left side, after surgery for a partial thyroidectomy they found cancer and I had to make the decision on whether I remove the right side as well which I proceeded with in a separate surgery.
The reason I shared this story and my suggestion on a second opinion is that during the two surgeries, my Endo suggested I was depressed and should be on anti-depressants rather than checking my levels and adjusting medication. My Specialist/Surgeon was shocked and agreed to take over my care plan.
You can live a normal life without a thyroid but as with supplementing any normal bodily function it never beats the real thing.
After the two surgeries, I personally found it took me at least 12 months to get my levels right, get myself into the correct mindset and habit of taking medication daily (previously I never took regular medication).
I now monitor my levels at least every 6 months and have put my husband on alert if I get moody regularly he needs to tell me so I can get a check-up again.
My surgery was 7 years ago and I was 31, since then I've travelled overseas, had two kids and lived a normal life. The only visual sign that people see is the scar on my neck from the surgery.
If I was in your situation with everything I know now I would:
1. Get a second opinion
2. Investigate whether a Partial Thyroidectomy would be just as beneficial this way the remaining thyroid, if it is 'normal', would pick up any slack that medication can't provide
3. Go with your gut instinct, in the end, only you know the right decision for your body.
4. Make sure you have a good, reliable GP as they will be your best confidant
I had my thyroid removed back in 2015, it took a while to adjust my dose, first I was put ontoLevo which never agreed with me. I now source my own NDT Thyroid s and feel well walking and Yoga which I have been doing since I was 32 years old. I am now 75 years old
and feel well. I only became better after joining this site six months after my TT I asked questions and read all there was to read up. Luckily I had no other problems.
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