Hi all ,I have an appt. next Friday to discuss removal of nodule on right side of my thyroid. I am a bit stressed and don't want to make a bad decision. Has anyone had this OP and did it work? What sort of questions should I be asking..my mind is just blank!
I would also be grateful if you could look at my blood test result from earlier this year. The endo I saw did not seem to fully understand them (he was a junior I think) as he had to go next door and ask the boss. When he came back he said that I should continue to take my 5mg carbimazole but to take an extra one every other day as one of my results was a bit low. I did this but after about 3mths I went back to taking just the one tablet as I wasn't feeling great and was putting weight on. The last visit to endo I saw another junior..again she had to go next door to get answers. This time I have been told that I have a heart murmur and a dry kidney. I've just had an echocardiogram..hopefully results when I see my gp next week. I'm still waiting for an appointment to have kidney scan and in top of that another blood test showed I am pre diabetic! I am not particularly overweight..9st 2lb at 5ft 3" and think I have a healthy diet. All this is making me feel really low as I already take candersarten to lower my blood pressure and I have high cholesterol! I feel like an old car ready for the scrap yard .
Sorry..just needed to off load all that. Thanks for any advice offered.
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Topsy-girl
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Hi greygoose and thank you for your reply. I am taking carbi because that's what I was prescribed for hyperthyroidism. I asked endo what had caused this and was told I have nodules on one side of my thyroid. After I kept reading about Graves I asked on the next visit(different endo) if I had Graves and he was quite curt with me and just said "no". That's all I know I'm afraid. I will try and resend blood test results when I get home...dont know what happend there..I'm not very good at this I think.
Yes, I realise you are taking it because it was prescribed for you. I suppose I should have phrased my question differently and asked: why did they prescribe it for you if you don't have Grave's?
You should always, always ask for a print-out of your blood test results whenever you have a blood test. It is essential that you know exactly what is going on, what's been tested and what the results were. And, if they haven't tested for Grave's, then they don't actually know if you have it or not. Presumably, when you were first tested, your TSH was low and your FT4/3 high?
The majority of the population have nodules on their thyroid, whether they have thyroid problems or not. And, normally, they don't cause any problems. So, are they saying that you have what are called 'hot' nodules, which are producing thyroid hormone independant of the thyroid gland? That's the only way that nodules would make you hyper. And, if that's the case, all they can do is remove the lobe with these nodules on it. But, you need to be sure of that. Have you had ultrasounds and biopsies of these nodules?
Can I ask please, you’ve said above the only solution for ‘hot’ nodules is removal of the lobe, is there no other alternative? This is what I have and I’m on carbimazole, 10 mg a day. I do not have Graves’ disease, is carbi what is normally prescribed for graves?
I'm afraid I'm not an expert on hot nodules, or even Grave's. Maybe there is another way, I don't know, but it would explain what has so far not been explained in this thread, namely why the endo wants to give the OP an TT.
Carbi is the treatment for Grave's. I don't know if it's helpful in the case of hot nodules. But it might be. The problem is, endos often prescribe it for the 'hyper' phases of Hashi's - which aren't strictly hyper - and it's the wrong treatment for that. It all gets confusing in this thread because the OP doesn't actually know what her problem is. But, all this is said for her, and won't necessarily apply to other people.
Hi and thanks for reply. Yes I have been diagnosed with hyperthyroidism for about 3 years and was told I had nodules on the right side of thyroid.They kept trying to get me to have RAI treatment but I declined as I was told I would almost certainly go hypo after treatment. I couldn't see the point in swapping one set of problems for a different set.
All this suggests Hypothyroid (perhaps Hashimoto's) not hyperthyroid
Or on too much carbimazole
Strongly suggest you get FULL Thyroid and vitamin testing...privately if necessary
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies (for Hashimoto's or Graves) tested. Also extremely important to retest vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If TPO or TG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). You can have raised TPO or TG antibodies with Graves' disease
High TSI or TRab antibodies confirms Graves' disease
Private testing for suspected Graves - TSI or TRab antibodies
Hi and thank you for the links. I have not heard the phrase “hot nodules”. I don’t think they were going to mention the nodules at all..it was just because I asked the endo why I suddenly had thyroid problems.
I don’t know what I should do regarding the consultation next Friday to discuss having the nodules operated on as there is not enough time to get tested before I go. I know my vit D is ok as I have been using better you high strength spray and last result showed it was 107nmol/L range 30-300.
Topsy-girl, Having a thyroidectomy is a very serious operation, that will make you hypothyroid forever. You may be lucky and do well afterwards, or you may be unlucky and really struggle (I'd say I'm at the unlucky end of the spectrum, and I have been too ill to work or take care of myself for the 6 years since).
I'd say the minimum requirement is that you fully understand your diagnosis and agree with the decision to have the op. It may be that there are alternatives like being managed on carbimazole long term, or even going into remission. Ask them to explain exactly what the diagnosis is, how other things have been ruled out, and how your condition causes hyperthyroid. Possibly ask them their view on the options you have besides the operation.
Then go home and research the condition yourself. You could make a new thread on the forum for pointers, and seek out patient experiences.
Doctors will often railroad us down one particular path because its cheaper and more convenient for them. Once your thyroid is removed and you are hypothyroid, you'll be crossed off the books of your current doctor and seen as a success story for them. Its important to double check all that they say to us, and make our own decision.
I have Graves and had a TT 4 months ago. Let me clarify nodules for you . There are two kinds : cold and hot. Hot nodules produce excess thyroxine - cold nodules do not produce thyroxine - they are effectively dead - but cold ones are the problem because these are the ones that are potentially cancerous - 15% of cold nodules are cancerous; only 5% of hot nodules are. Do you have more than one nodule?
As to the removal of a nodule, I am assuming they are removing a lobe of your thyroid.
I have a few comments.
I would not rush to remove any part of your thyroid unless your symptoms are so bad they are affecting your ability to function.
SilverAvocado has said it well. I waited 25 years before having mine removed because I had no choice - my goiter was crushing my windpipe and vocal cords. I was on Tapazole and doing OK - and happy to stay on it as long as I could. Some people stay on Tapazole for a long time - my endo has a patient on it for 11 years.
It is possible that your doctor thinks that some of your health problems are being caused by your thyroid. You should ask about that. I would also ask directly : why do you need to remove the nodule (again I think it will be the whole lobe but that’s a question you should ask).
Thyroïdectomies are tough surgeries. The recovery time is about 4-8 weeks - but getting the meds adjusted can take up to a year. With a partial thyroidectomy, the part which is left may take over and you may not have to be on meds for the rest of your life ( so my thyroid surgeon told me). I am recovering well - but it has been hard - and it may take another 8 months before my meds have been sorted out.
Most surgeons do not operate on just a nodule - it’s an awfully big surgery for one nodule - so I would ask about that too.
Hope his has helped and wishing you good luck. All the best.
Thank you do much for your informative reply. I now feel I can go to the consultation armed with some sensible questions. The endo just said that the thyroid that was left may take over ..no guarantees, and that they would treat me with block and replace ??
Everyone is so helpful on this site and I am grateful to each and everyone for the time you have given me.
I’m so glad I could help and update us on your endo visit - I hope all goes well for you. I would also ask about a “wait and watch” approach as well and whether or not you can stay on the carbimazole a while longer.
Also ask how large the nodule is if you don’t already know. Anything bigger than 2.5 cm is considered a large nodule - that may be another issue for your doctor.
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