I had a 95% thyroidectomy 15yrs ago and was in remission until I gave birth a year ago.
I went extremely hyperactive but within range and feeling fine for last 6 months.
I have a large goitre and I am due to have op in 3 months. Here it gets complicated.
They found some very small lung nodules on CT for thyroid and radiology said they were no clinical relevance no follow up.
Surgeon said he wants to be sure they haven't missed thyroid cancer and its in my lungs so CT in three months to be sure.
I have been in such a mess (posted previous on here). The watch and wait torwards cancer is making life impossible.
Soo if we went private I'd need a loan (more debt!) should I just see a decent endo? See a surgeon? Or have a PET and then just wait for NHS op? Any thoughts? X
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Wiggy29
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I was only thinking of you and the baby today and wondering how things were going. So sorry things haven't moved on much and I can understand your worry. Have you ever heard of Butterfly? Its a charity for thyroid cancer, not that I am saying that this is what you have got, but I'm sure they will have come across similar cases to yours and there is a helpine number. Please phone it as they are the experts and may be able to suggest alternatives.
Sorry I've replied in the wrong part again. Moggie I wonder also have you ever heard of people taking milk thistle or l-carnitine? I wondered if this relapse could be worse because I am lacking l-carnitine (I went vegan from vegetarian after willow was born because she had a milk allergy). Sorry if this is off topic! X
Never heard of it but did a quick google search and found this, it might help and if you want the full link let me know.
Hyperthyroidism
Enlargement of the thyroid (goiter) can be due to many causes, including cancer and iodine deficiency. In some cases, thyroid enlargement occurs without any known cause, so-called benign goiter.
Treatment of benign goiter generally consists of taking thyroid hormone pills. This causes the thyroid gland to become less active, and the goiter shrinks. However, there may be undesirable effects as well. Symptoms of hyperthyroidism (too much thyroid hormone) can develop, including heart palpitations, nervousness, weight loss, and bone breakdown.
A double-blind, placebo-controlled trial found evidence that use of L-carnitine could alleviate many of these symptoms. This 6-month study evaluated the effects of L-carnitine in 50 women who were taking thyroid hormone for benign goiter. 57 The results showed that a dose of 2 g or 4 g of carnitine daily protected participants' bones and reduced other symptoms of hyperthyroidism.
Carnitine is thought to affect thyroid hormone by blocking its action in cells. 75 This suggests a potential concern—carnitine might be harmful for people who have low or borderline thyroid levels to begin with. This possibility has not been well explored as yet
Moggie thank you! I'm going to ring them first thing, I just feel bad when I don't actually have a cancer diagnosis. I don't want to waste their time!
I've not heard or had a reply from my GP who was raising the scan as a concern or the surgeon who was apparently calling a meeting to review the CT. I've chased both up but never hear back.
I think my partner is agreed that I should see the GP and ask advice on the private route. I keep telling him its only money?! I haven't mentioned that once I have surgery ill no doubt become hypo an have a whole new list of symptoms
Willow is coming on leaps and bounds, she's started walking now and she is a cheeky monkey! Thank you for the thoughts x
Your very welcome sweetheart and please dont think that you are wasting peoples time - your worry, stress and concerns are real and you need someone to talk to who understands your situation. If/when you do have the op then you'll have us on here and if there is one thing we do understand its hypo symptoms.
If you have time please give us a quick update once you have rung butterfly tomorrow.
Thank you! It really means a lot. My partner has been incredible, there is no substitute for people who really understand though I'll be back on to update after I speak to them. Thanks again, take care x
Could you maybe pay for a private consultation with a decent consultant then hope he puts you high on his NHS list - I know people might (will?) say that is queue jumping but as you have a little baby to care for you don't want to hang around any longer than you have to. It is so hard when people don't even get back to you.
Morning Liz, I think this is the best idea thank you. I don't want to queue jump or use my daughter as an excuse but I'm really struggling with the anxiety that comes with this and you're right I have to do what is best for my family? I was more than happy to wait for the op, I actually wanted to put it off because I'm bf'ing but now they have mentioned the C word I don't feel I can wait. The endo I found in London from the list I got on here is also NHS and he sounds great. I'm going to book today! Thank you x
Good for you I'm so glad to hear that, I hope you are able to get seen really quickly, I can't even begin to imagine how anxious you must be feeling so good luck, you know we'll all be thinking of you. Liz x
I am sorry you are so worried but it is understandable. If you email louise.warvill@thyroiduk.org, she has a list of NHS Endos/private doctors and one may be near you.
Thank you, I have the list and I have been in touch with some of the more local ones, I'm just very confused with who I should see. I guess start with a good endo then move onto surgery if I have to. It's just the waiting I feel like I want it out tomorrow lol. Thanks again x
Absolutely! I've been fine with my treatment, even when feeling terrible swinging between hypo/hyper but as soon as they mention the C word Im struggling with the waiting x
It may help if I tell you I discovered a lump in my neck when in SOuth Africa with private medical insurance. I saw the GP at 10am, was booked in for a scan at 12 saw the consultant at 4pm and the op was booked for three weeks later. Very scared at the time, but so glad I wasn't kept hanging around for months. You need to know what is going on and you need to know now! End of. So if you can afford it then go private.
Wow what a difference. I was told my op would be within weeks nearly a year ago. Passed between endo & surgeon, neither wants to take responsibility for my case now I've been left so long. They just blame each other. I hope you are well and I'll be making enquiries tomorrow (I'm sure they have sales staff at weekends
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Please help, I don't know what to do
Thyroid removed 
Do I really need a biopsy?!
Advice/what would you do
