Hi there, I had a partial thyroidectomy 25th November this year due to nodules in my right side of thyroid. Initially the biopsy said that it could be follicular Lab results showed three nodules largest one 12mm and a papillary carcinoma wondering why one minute it was thought to be follicular now it's seen to be papillary. I remember reading somewhere about rare forms of it and was a bit scared. Anyway obviously not the news I wanted and initially felt scared and nervous. Am since feeling better and just waiting for total thyroidectomy on 23rd December. After I'm going to have to take medication and probably have rai. I'm quite nervous about waiting for the results after op and how I'm gonna feel on this new medication. As far as I'm aware my bloods are within the normal ranges but obviously once thyroid is removed am gonna be hypo so will need meds to correct this. Am I gonna feel bad, how is this gonna effect me? I had been to drs in the past saying that my hair was falling out and that I was tired etc etc but when I had blood tests done they always said that my bloods were within the normal ranges so I'm just wondering if I had an imbalance in the past and it went undiagnosed etc...also I have a hardish lump around scar tissue from the op just wondering if this is normal or if it's something to worry about?
Sorry for the longish confusing post but feeling a bit confused scared but quite happy also that they have detected it relatively early... Just would like some advice and or to chat with people who have been through the same...? Xxx
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loopyboo
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Welcome to our forum. Some of our members who have had a TT will soon comment. I myself am hypothyroid so haven't had the experience. I do know, however, how scared people are at the mention of cancer but this is quite a common procedure nowadays and you live a long and happy life as long as you get proper, adequate, thyroid replacement medication which makes you feel well again.
Don't hesitate to ask any questions which bother you and, of course, you will be hypothyroid after treatment. That will be the next step in your journey to get back to normal health and hope you have a good endocrinologist who will guide you.
Loopyboo, it's not always clear from small samples what type of thyroid cancer one has. Follicular is a slightly more aggressive variant of papillary cancer but both are easily removed and treated and prognosis is generally very good. Really, you have already faced the worst in being told your removed tumour is cancerous. Your existing scar will be reopened and probably extended by a couple of mm for completion surgery. Make sure you mention the hard bump to the surgeon and get advice to ensure the new wound heals smoothly.
I had Hurthle cell carcinoma in the nodule removed during hemilobectomy. The lobe removed during completion thyroidectomy was benign. I was put on 60mcg Liothyronine (T3) the morning after the operation until I had RAI almost 3 months later. Because my bloods had been 'normal' despite feeling very unwell I wasn't given thyroid hormone until after thyroidectomy. It was an immediate improvement being on T3. I was recovering well on T3 but was set back when I was switched to Levothyroxine (T4) after RAI. It took a long time but I am now recovering well on T4+T3.
Good luck on the 23rd and I hope you feel well enough to enjoy Christmas and New Year.
Loopy, Removing the lump during hemilobectomy meant I could breath and swallow easily afterwards but I felt as ill after the hemilobectomy as I did before it and I think it was due to the Hashimoto's and needing thyroid hormone despite bloods being 'normal' I felt a lot better after the completion thyroidectomy when I was started on T3.
First of all get Serrapeptase 120,000iu for the scar tissue, it "gobbles" up dead matter and proteins in the body, including plaque in your arteries.
While doctors both in the UK and US are trained to test and treat purely on the TSH test, people will continue to suffer from underactive thyroids. It is criminal that people are left untreated just because of a number. The parameters of normal are too broad (between 0.4 to 4) and treatment is only with Thyroxine or T4, which is a storage hormone, not the active T3 form. In a perfect world you would be given Armour natural desiccated thyroid but you will only get Thyroxine. There is a T3 drug called Cytomel but I think this is only available in the US, but it isn't widely prescribed there either. Some functional medicine doctors believe that any reading over 2 should be treated.
If they are removing your thyroid I wonder why they are also giving you Radio Active Iodine, after which I understand you should avoid normal iodine. Thyroids need iodine to work properly but if you are prevented from taking it, it is going to impede the body converting T4 to T3.
You need to include the following supplements in your regime to help the Thyroxine convert to T3: Selenium, L-Tyrosine, B6, B12, folate NOT folic acid, I take Source Naturals MegaFolinic which is reasonably priced, and zinc. I take NOW Thyroid Energy which includes these vitamins and minerals but does contain iodine so wouldn't be suitable.
I am not a doctor, just an interested kinesiologist who subscribed to the Thyroid Summit, which is an online series of interviews with functional medicine doctors in the US and have learned an awful lot from it.
Katwoo, RAI follow up after surgery means any remaining thyroid cells in the thyroid bed and any loosened by surgery take up the radioactive iodine and are killed off preventing the cancer spreading elsewhere in the body.
This is true. Although I have had a total thyroidectomy, thyroid cancer cells were found in numerous lymph glands and so I will be getting Radioactive Iodine treatment soon. The RI treatment catches any of the little ( buggers! ) thyroid cancer cells floating around my body and kills them. Thyroid cells love iodine so will be very attracted to the RI.
I am so pleased to read that patients are actually treated with T3 after removal of their thyroid, I thought this poor lady would be stuck with just T4. I have learned something new and I am grateful!
Katwoo, T3 is usually only given if RAI is to be scheduled as it's short life means that patients only need to stop meds for 2 weeks until TSH is >30. If RAI isn't required the patient is prescribed Levothyroxine and after RAI they will be switched to Levothyroxine. It took me 18 months to persuade my endo to prescribe T4+T3 and he only agreed because my health had improved in the 3 months I was self medicating.
Loopy, Levothyroxine is thyroxine or T4 for short. Liothyronine is T3. T3 is 3 x stronger than Levothyroxine but has a short half life so usually needs to be taken 2 or 3 times daily as opposed to Levothyroxine being taken once daily.
I don't think you should worry about being on too low a dose. They usually want TSH suppressed after thyCa which usually means 60mcg T3 or >150mcg T4.
I had a TT in March and RAI in May. I too was initially put on T3 immediately post op as you can build up to complete replacement levels quickly and then they deliberately stop the medication before the RAI so any remaining thyroid cells are stimulated to take up the RAI and be killed.
Although you are not in hospital long a thyroidectomy is still a major operation and you need to give you body time to recover, your body is also getting used to synthetic hormone. I was a bit scatty and had a poor memory for around 4-6 weeks which was my brain getting used to the T3. I was also not allowed to drive for a fortnight after the op, but I understand different surgeons give different advice!
I now feel well even though I was put onto levothyroxine post RAI and very much back to how I was before. I wish you well and hope tha you wil be home for Christmas.
I'm so sorry to read that you need to go back for a TT and just days before Christmas although at least having had the hemilobectomy you have an idea of what is going to happen this time. Is this at the royal London again? I think the best bit of advice is to make sure that you get the medication right and make a fuss if you don't feel right. Some people say t3 is difficult to get prescribed but I and others have been so it is possible if you need it.
Did you managed to find the arnica pillules last time? If not please PM your address and I will send you some.
I hope all goes well and you get home to be able to be spoilt and enjoy Christmas with your two year old.
Do you think I will be back for Xmas how long were you in for. Yes, I used the arnica last time afterwards. Do you think I should start taking them now and how many a day?
Yes if all goes as it should then I think it will be day surgery like last time. How is the scar from the hemilobectomy. Mine is still a bit raised and hard so I am still taking the arnica ( when I remember) a couple of times a days and I think that it has helped. Yes I would recommend taking them now and for at least 3 weeks after.
Coming home so quick is good as long as you can rest at home - don't try to do too much.
Have you been on any replacement medication up until now? Check that you understand how you are going to be medicated before you have the op so that you completely understand that as getting to speak to anyone over the Christmas period might be difficult.
Hi I had TT in August for follicular carcinoma. My surgeon always described it as papillary carcinoma follicular variant so like clutter says it may not be a change just a different way of describing the same thing. Either way these are not the 'rare types' that are more worrying.
The second op replaced the first scar, and the new one is much neater with no lumpiness at all, gradually fading. Hopefully yours will do this too.
I was put on T3 after but now (having chosen not to have RAI) have been changed to T4. After an initial hiccup, this has been fine for me.
Hi thanks for your reply, they said they will start me on a low amount of meds to start. I have no idea what this is all new to me I know nothing about it all. Quite a bit concerned what if they put me on a low dose as they believe it will be right for me and I'm feeling terrible...? How bad is bad? Will I turn into a monster?
My original scar was a bit lumpy but too be honest it wasn't so that you would have noticed. Much better now. Haven't done anything except much moisturiser.
I was kept in overnight after the TT, and went home the next day. I was very tired for at least week afterwards though, and found thinking difficult. So do take it easy over Christmas and go and lie down when you need to.
Thanks for reply. I'm quite anxious about how I'm gonna feel afterwards I keep reading how people say they are feeling and that it was really bad etc just scared that I'm not be able to cope. Is it really that bad will I be able to function properly?
Gentle massage around the incision will help with scar tissue. I had the same problem. Went in for a partial and later came back papillary cancer. It is the most curable. It will be all okay. I didn’t have a good Dr at the time and he didn’t go back in. Now, 2 years later, I have a new growth on the side they removed! I take 150mcg now. Started at 125mcg. Have to have ultrasound and blood work every 6 months. You will do fine. Deep breathe.
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