I was diagnosed with a non cancerous, non toxic multinodular goiter in March 2023, bloods all normal, did have chronic fatigue, hot sweats, palpitations but these have since disappeared.
The goitre (which is more visibly on the right side of my thyroid 7.2cm) was pushing on my windpipe esp at night which was waking me up choking but this has also subsided to hardly ever.
Never had any pain just the odd twang of it every now and again and feeling a pulse running through it (if that makes sense) but I was told at my last appointment that it would be a full removal which devastated me. I tried to ask questions but he just shut me down so I feel really in the dark about it all.
I had an appointment last Friday which was subsequently cancelled as soon as I arrived to discuss ‘surgical investigation’ whatever that means and now have to wait 5-6 weeks + for another appointment.
If my bloods are normal and it’s not pressing on my windpipe anymore would they still need to operate? Is it necessary or is there another option.
my anxiety is through the roof, I’m totally alone at home and have no one to ask for advice.
I’m petrified as I’ve never had an operation and also weight gain, scar size, fatigue, and all these other issues ppl seem to get when having a full removal that I’ve read online.
has anyone been through what I’m going through?
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Bonnyblue23
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Welcome to the group. If you could complete your profile it helps people understand where you are in your thyroid journey. Click on your image icon to start.
Do you have your latest blood results that you could share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can download the NHS app and ask for permission to view your results on that at GP reception.
Often what a GP might call 'normal' results are a lot less than optimal.
Goitres can often reduce with thyroid hormone treatment as opposed to surgery.
Have you had your thyroid antibodies tested? The NHS only test one type, TPO but there is also a different type (TG, Thyroglobulin) that you can test for privately.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Surrey, Sussex, Kent areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
I would recommend getting some private testing done that will include your free hormone levels FT4 & FT3. It's totally inadequate of the NHS to just test TSH which actually tells you very little about whats happening with your thyroid hormone levels.
If you're testing privately then also be sure to include thyroid antibodies TPO & Tg. Vitamins ferritin, folate, B12 & D3 are usually also part of these package tests and you could then begin working on supplementing levels to optimal which would help some of your symptoms.
Private blood test details in my previous response.
I'm so sorry you're not being heard by your doctor and have the added prolonged worry with your appointment cancelled. Living alone makes it harder, I'm on my own now too so I get that. Are there friends and family you can call and talk to, who understand, so you don't feel as scared?
I have no experience with this particular problem but I do know of a different scenario a friend went through for a surgery she was pushed into, without clear explanation of any alternatives. Since the surgery she's heard of alternatives she wished she'd known of so could have made an educated decision on what was best for her.
I hope here you can find enough info to make a choice yourself on what you feel is best for you
Since the surgery she's heard of alternatives she wished she'd known of so could have made an educated decision on what was best for her.
INFORMED CONSENT is essential when any "professional" recommends any procedure, injection etc. that has the potential to irrevocably change our lives. (that's not so much of an issue for various simple things). but unnecessarily tinkering about and removing bits of us is something other. INFORMED CONSENT includes being told of all possible negative outcomes so that the patient can make their own "risk" assessment.
(The consequences of radio active iodine treatment would be a case in point).
I wish your friend well and hope she finds way to mitigate any negative consequences.
Hello, I’m sorry to hear about what you’ve been through. I had a large multi modular goitre. Luckily I also showed up as hypothyroid when my blood was tested. Once I started on Levothyroxine my goitre disappeared. It took a few months but it just shrank away. I had a biopsy to check if it was benign or cancerous & mine was fine.
I was extremely relieved as the endocrinologist, a professor, told me that the medication wouldn’t shrink my goitre. It’s something that has always puzzled me!
I think it’s vital that you obtain your blood test results and post them here. Ideally you should get a private blood test as they’re often more detailed. But show us anything that you have from the NHS.
I think that you have the right to ask for a second opinion from another consultant so that would give you more time to decide what you want to do. Ask your GP to arrange it. Remember too that you have to give permission for surgery. You don’t have to have it. Have they done a biopsy yet?
If you do have to have surgery don’t be scared. My sister had her thyroid removed & takes a dose of thyroxine every day. She is skinny as a rake, very active & has a tiny scar across her neck that is hardly visible. Many people do well on levothyroxine, the people who are on this forum are the unfortunate ones who have problems. The majority of hypothyroid people aren’t here as they are fine taking a small tablet every day.
Keep in touch here, we understand how you are feeling. Many of us have experienced the same feelings that you’re having now. I hope this helps.
I am sorry that you are going through this at present. I originally presented with multinodular goitre with completely normal blood test results and was offered surgery. Like you I was extremely reluctant to accept this without further consideration. Please remember you have to sign consent for any surgery. I was vocal in saying that I wasn’t happy. I first had fine needle biopsy to rule out cancer and then agreed to yearly ultrasound to monitor any growth. I was advised that multinodular goitres do often increase in size. I had yearly ultrasounds for 5 years, but by that time the nodules had increased and I had swallowing and minor breathing difficulties. At this point I accepted surgery was the only option. I had my thyroidectomy 10 years ago and I am doing well.
My advice would be don’t rush into making a decision. If necessary ask if you can record your consultation to review again later. Do investigate if there are any less invasive options now available on the nhs, Ask your surgeon what happens if you delay surgery? You need to take time to become fully informed before you can move forward. Good luck
Hey there. Many Many people here have had what you have. Probably most are Graves disease patients. You might benefit from looking for posts on Graves. Basically Over active people (hyper/Graves) and under active people who either started hyper and are now hypo or were always hypo. It's scary but it's not cancer. The treatment is pretty disappointing, for all of us, for you they want to remove your thyroid altogether and put you on replacement drugs. On the upside you get free prescriptions now, for life.
People have varying success over the years with replacement drugs with periods of great and periods of not so great.
Those of us with Hashimotos the autoimmune issue that seriously screws with lots of things including the thyroid have issues with gluten and are generally oversensitive to changes in environment or diet.
I know you're scared but it's a routine operation. I've never heard of ANYONE having complications, and I've been on this forum for years. Read what you can on Graves, stand up for yourself with your GP and change GP if you don't think they're taking you seriously.
You should get an endocrinologist to sort out your meds after the operation. Try to stay with the endocrinologists for as long as you can because your GP will quite possibly know less than you do about your condition. You will be OK. We're all here to support
it's a routine operation. I've never heard of ANYONE having complications, and I've been on this forum for years ... 'routine' yes. but far from simple ... it can be a long and complicated surgery. There are definitely a few people on here who have had complications, i've come across one or two who have ongoing issues with weak voice afterwards .although this is unusual , and a few more where their parathyroid glands were affected and didn't recover, leaving them with Hypo-Parathyroidism as a result.
(there are 4 tiny Parathyroid glands very close to the thyroid gland, which regulate calcium levels in the body ,if parathyroid glands are all removed , or damaged and don't recover , it means they need to take calcium for life) .
You will note from members comments above how common multinodular goiters are.
They form when the thyroid gland is struggling to produce enough hormone, generally when Hashimotos has destroyed partial gland and/or upset the general production of thyroid hormone. The anxiety and 'pulsing feeling' is fuelled as hormones fluctuate, which can also generate flu-like symptoms.
If the goitre is non-toxic, I guess your consultants biggest concern is if it were to swell again and start pressing on your wind pipe. However, having said that it may not and most shrink when thyroid activity is reduced through thyroid replacement meds.
If this were me I would firstly establish true thyroid hormone levels and thyroid antibody levels (TPOAb + TGAb). I would write to the consultant explaining my wish to avoid surgery if possible and request to be monitored, and try to shrink the goitre through use of Levothyroxine as soon as hormone reduced enough to allow.
Meanwhile, check nutrients and iron levels as you are going to need to keep yourself in good health what ever happens. Ask your GP to test ferritin, Vit B12, folate and Vit D. A doctors interpretation of ‘normal’ isn’t always what could be optimal. If you supply your test results complete with ranges (numbers in brackets) members will comment.
Read Isabella Wentz book called 'The Root Cause' for ways of managing thyroid autoimmune issues.
but I was told at my last appointment that it would be a full removal which devastated me. I tried to ask questions but he just shut me down so I feel really in the dark about it all.
To my way of thinking, shutting you down is an act of abuse. Despite your very understandable fear (causing anxiety), RESIST this bully creature's "advice".
Please take a m moment of two to breath deeply - shoulders should stay in place, tummy should expand on the INHALE and then deflate as we breath out. This gives a nice exchange of gasses and helps calm the mind.
As Tinkerbell says:
Living alone makes it harder, I'm on my own now too so I get that. Are there friends and family you can call and talk to, who understand, so you don't feel as scared?
If you don't have friends/family for support that is very tough - I hope there is someone because I think it would also be very useful to be accompanied to your next appointment. Does the UK have volunteer groups for that kind of thing?
has anyone been through what I’m going through?
No directly related to thyroid but dental related. "You have the mouth of a 60 year old (I was informed at age 22) - I have to grind down 8 of your top teeth, and cap them and at the same time I will have to make your a very expensive bridge made from gold" - this will fix the problem" (LIAR LIAR, pants on fire!!!).
The consequences of "complying" (and paying through the nose) were devastating for me.
I was severely deficient in various trace minerals (magnesium for one). By age 22 I'd had "opportunities to learn" one after the other for 12 years - a horrible HYPER episode when I was 17 that took months to burn out) - I never saw a doctor and that was probably a blessing!
How are you sleeping? Are you eating well and keeping hydrated - drink some calming herb teas throughout the day perhaps. We always need simple things and PRACTICAL solutions but even more so when we are emotionally disturbed.
Hi, I understand your fear. I have a goitre - very visable but not cancerous and according to Drs my blood results are normal, but according to Medichecks Very high TPO. The Dr will not give me medication and the only answer they had was to have surgery. That would be a last resort for me and so I just walked away. In the meantime have been gluten free. It does not seem to have made a difference yet to the goitre - so probably dairy free next. The major thing that seems to make the goitre feel intense and larger is stress! So as others have said - try to breath, let the stress go and know that you do not have to do anything urgently. Take time to do the private tests and look at all options - then decide.
I really feel for you. I have some parallel, at 16 I was told I needed my tonsils removed having had very painful sore throats for years. Like yours the surgeon would not discuss a non surgical approach, his reply was a sharp reprimandal: "I wouldn't have said you needed them out if you didn't would I!" Ever since I have regretted the consequences. It's your body, you will live with any consequences so it's for you to choose what is or isn't done whether the medics like your choice or not. The way I see it now is that if you don't have surgery but try other things that are not a success then surgery remains an option. The other way round they can't replace what's been removed!
Hello dear. I will complete my profile afterwards, but I wanted to reply first cause I can fully relate with your story. Never had an operation and frankly I am scared of it. About 10 months ago, I have been diagnosed with a non-toxic benign multinodular goiter, with the right side a lot bigger than the left. I had 2 ultrasounds, a scintigraphy and a biopsy of the biggest nodule, which was benign. I have been proposed a subtotal thyroidectomy straight away, although I had no symptoms. I am not a candidate for radioactive treatment cause the lower part of my thyroid doesn't absorb enough of it. Like always, I try to do my own research. As I live in Belgium where they do not perform RFA (ablation with radiofrequency) I went to a clinic in Holland. In June they did another ultrasound. Results totally different from the ultrasound in March : left 2 nodules, one of 1,5 cm and a calcified one of 9 mm. I seem to have a big nodule of 4,8 cm on the right, tirads 3 and a nodule top right of 2,5 cm with calcification, tirads 4! I will have those two biopsied somewhere end of August. If benign, they could treat the big nodule with RFA. Still having vacation now, with the notion that I have a slightly suspicious nodule...I decided to do what I have to do and have this thing sorted out before Christmas! Hang in there and try to find out if you are not a candidate for RFA.
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Hi, I’m a new member and know so little about my thyroid condition. I’d like some advice!
scared with my lab levels. I’m told I’m in danger, but I don’t feel horrible? Looking for advice. I’m confused and anxious 
I’m awe of this site. 
Feel so Disappointed I’m back on Levo 
why are docs so scared by low tsh?
