Hi I'm based in the UK, 1st time posting. I've been advised to have a partial thyroidectomy by an ENT consultant following a Thy3 test result. It's going to happen soon, I am being fast tracked for surgery, pre-op in 2 days. Found the lump in March but it may have been there for some time. Its about 4cm. Bloods came back "normal" which I just accepted at the time. Since this bombshell I am learning that I need to get more detail on test results. I have had "long covid" symptoms for 2.5 years. Symptoms include fluctuating fatigue; low mood; anxiety; low motivation; low libido; light sensitivity; tinnitus; brain fog; migraine; feeling of pressure in temples; feeling of fullness in throat; constipation. I also seem to have puffy cheeks! I really do not want to have this procedure if it is not 100% essential.
My questions are:
1. Is it worth asking for a 2nd opinion by an endocrinologist?
2. Is it worth getting private blood tests?
3. Are there any alternatives to surgery?
4. Are the symptoms likely to improve with surgery?
5. Can my remaining half a thyroid compensate for the tissue loss?
6. Any other advice or experience would be gratefully received 🙏
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Kallew1
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I have not been in your situation, but have read a variety of posts just like yours from people before and after thyroidectomies. You can search on this forum by keyword - you may have already - but do consider that forum posts are usually written by those with issues, and there are many people who do great but they won’t be posting here.
Regardless.
Everyone is different. You must be your own advocate, learn everything you can, and never be rushed or pressured into doing something you are not educated and comfortable about.
You can always have the surgery later. But you can’t undo it after.
Doctors and hospitals are not personally invested in your outcome, and you are the one who will live with it.
Come back here with any other questions, there are so many here with shared experience that can help you.
The symptoms you mention are very familiar, are you on thyroid replacement medication? Have you had TSH T4 and T3 tested?
If you are hypothyroid now with a whole (albeit wonky) thyroid imagine the support you will need with half a thyroid.
Ask your specialists to clearly explain the specific detail (what tests, what medication, what follow up, with which endocrinologist, how often, for how long) after surgery.
I would do everything SlowDragon has suggested above, following her advice closely has helped me back to health after a lifetime of weird symptoms and no diagnosis until my late 40s. 🌱
I had a near total thyroidectomy 33 years ago. The thyroid continued to fonction normally with the remaining gland. I was given Levo- thyroxin to cut back the thyroid's work ( their words) .
I had my thyroid removed in 2015 and have feel well since. Here in France they only ever remove the whole thyroid. The only advice I can give is to make sure your surgeon is experienced in this field and that your parathyroids are retained. Testing your thyroid levels before is a good idea too.
I’m taking the holistic approach with lifestyle changes like going vegan paleo/keto style, exercise oxygen therapy, acupuncture, trauma therapy, fasting, mercury removal from teeth and lots of supplements. I’m saving for a functional medicine doctor to get to the root cause of how this happened so I can heal. Only after I have done everything I can, will I then consider chopping things off. I’ve got the lump down to 9mm.
I am very new to this group and first time replying to a post so please forgive any transgression and hope I post correctly!
My experience is, in March 23, I developed a significant swelling on the RHS of my thyroid. The previous year I had surgery to remove a cancerous tumor in my uterus so I was “fast tracked” for a diagnosis to be made on my thyroid and as you can imagine I was extremely anxious at this time.
I had previously (Dec 20) been diagnosed as having subclinical hypothyroidism and was not on any medication at the time (still not on any medication) and was on a “watch & wait” at my GP……
Only my TSH and antibodies were tested at this time and no advice given on timing of tests or on fasting….. an ultrasound was undertaken and a Fine needle aspiration on the lump. On seeing the consultant I was advised that a partial thyroidectomy should be performed as cancer could not be ruled out at this time.
While my knowledge of thyroid function and dysfunction was (and still is) limited at this time, as you can imagine I was not happy to have another organ in my body removed after my radical hysterectomy the previous year and I asked for further testing to be undertaken as in general I was feeling well. This was thankfully approved by the MDT, so grateful to have an experienced consultant who listened to me.
A core biopsy was subsequently undertaken. Thyroiditis was confirmed and it was determined that there was no need for part of my thyroid to be removed at that time and no need for medication…… I was discharged under the care of my GP who is now monitoring 6 monthly via my TSH only….. :(and bit by bit I am learning more about how to try to get my thyroid functioning better, although my TSH still remains above range
Hope this helps in some way.
We truly do have to build our knowledge base with the help of such great groups as this one and advocate for ourselves. Hope you can gain more confidence and trust in yourself as you gain more knowledge and as someone has already mentioned - take some time to put your ducks in a row and don’t be pressured into anything.
Often, our medical professionals have a very blinkered view of the support they can offer and there is so much more available to us when we look at things holistically. Sending best wishes and hope you can manage your health anxiety xx
I had a partial thyroidectomy two years ago due to size and position of nodule and the presence of suspicious cells. Have they stated the reason for your need to have a partial thyroidectomy? Also reasons for fast tracking?
I asked about ablation but was told I wasn't suitable due to suspicious cells.
Don't rely on the hospital to do full range of tests required as they may not. So best to test privately before your op so you have a baseline to work on.
I was hypothyroid before my op and had been for many years before then but was unable to get an help from my GP. Post op my remaining thyroid didn't cope and I was eventually prescribed levothyroxine for tiredness by the endo nurse. I've been slowly titrating up my dose since then as I struggled to initially tolerate levo.
hi Kallew1, I had a partial thyroidectomy in 2014. I am in Uk. I was previously diagnosed with under active thyroid in 2001 and subsequently with hashimoto’s when Levothyroxine doses were not getting rid of all the symptoms. I had a needle biopsy and ultrasound of my goitre when it first appeared and lived with it for several years. I noticed it was a problem when I was hanging out the washing - arms raised made me feel like I could not swallow. I recognise the full throat you mentioned. Obstruction was not that bad but as I had a CT but I asked for surgery which was acceptable to the surgeon when I saw him- my argument was that I wanted the surgery whilst I was young to minimise recovery ( I was late 40’s) and the goitre was eventually going to be a bigger problem. The surgeon was excellent and explained all the pros and cons and that they don’t like to remove both sides if they don’t have to but I was told the remainder would continue to grow and may eventually need to be removed. My advice per everyone’s comments is to ask why you are being pushed in this direction - I find when I am well medicated my newly formed goitre becomes less problematic ( so I assume it shrinks) - your symptoms may be Covid related but correct bloods will indicate if they are driven by thyroid not working as it should. It’s a big decision. I never regretted it but I think I was pretty ignorant at the time.
There will be a very good reason your consultant is fast tracking you for a hemi thyroidectomy after a THY3 test. In your shoes, with the information you have given, I would do everything purpledragon has suggested, giving thanks your op can be done so quickly. I know it’s a scary thought, I’m facing the same op but with a year long wait. Best wishes, I shall be thinking of you 💐
I had half a thyroid removed in 2021 after a needle biopsy showed that the nodule was "suspicious" for cancer. I had two other opinions and they concurred that there was a 30% chance of cancer. Following the surgery, I felt unwell for months, could hardly function and felt dizzy and faint. I also struggled with low iron. I was placed on 75 mcg levo which I still take. the nodule turned out to be benign. I did feel pressured by the doctors to have it removed. Now I have to take a medication the rest of my life and my thyroid had been functionally normally before the operation. I did it for two other reasons. The nodule was partially displacing the breathing tube and I didn't know if I could survive the operation at an advanced age.
Hi Kallew1Please have a look at my last post titled "Ethanol Ablation" which is being offered to my husband. He was originally referred on a 2 week suspected cancer referral. Apparently this procedure is only offered in 3 UK hospitals, Newcastle being the latest.
Well let me add my experience. I live in the US. I had a partial thyroid ectomy in 2009 due to extreme swelling. My PCP or general doctor watched it for nearly a year. I remember going for my scan and the technician said why did I wait so long? Thyroids do not shrink. It is typical for the other half of the thyroid should be removed within 5 years if on certain medications as I was. For me it was only about 3 years. At that point the swelling and ability to breathe swallow eat or lay down was not something I could ignore. I was grateful to have the same surgeon do the second surgery. Whether you've had a half or whole you will need thyroid medication. Mine was suspicious for cancer had three biopsies which could not determine so that's why the first one was done. The thyroid controls so many things in the body. You cannot take anti-inflammatories with thyroid medication. There are a lot of things to get used to changes in the doses but it's not the worst that I deal with. I think you will be fine. Keeping your TSH in the optimal place of about 1.0 is always the goal. It's not just a number it's that and how you feel regardless of what your physician might try to Pawn off on you. Best of luck. Janet
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