Long standing Goiter

[Void1234]

I have a long standing goiter have had it for around 11 years and hashimotos . Have had ultrasounds , regular blood tests etc all tell me it is ok and to consider surgery as it is quite visible. I am 42 years and it has never gave me much bother - aside this year it appears to be acting up , im developing tickly cough etc at times and it feels like it really is swelling up at periods and reduces down in size again and there is a rollercoaster of tiredness and exhaustion comes with it and some shaking and panic attack feeling. My endo done my bloods said all ok , i am only on 50mgs of levothyroxine. But i don’t feel ok and now have decided for surgery for removal and i am concerned what the next rollercoaster will be and yes it feels like at times the Endo is not listening at all around medicating and i worry when the thyroid is gone and im struggling to get balance in meds levels will they listen. Has anyone been through similar and give me any steer? Thanks

[ShootingStars]

Hi Void1234. This is so sad that doctors have left you under medicated for 11 years, resulting in an ongoing goiter, instead of it shrinking as it does when properly medicated. I am happy to give you your requested steer: Run fast and find another doctor immediately! Oh my! Where to start about this doctor and the horrible suggestion of what he is recommending?!?

- First off, proper treatment for Hashimoto's is NOT removal of the thyroid!! Proper treatment is taking therapeutic doses of T4 and sometimes T3 until you have the least amount of symptoms, until all of your TSH is suppressed and your FT3 and FT4 are optimal (usually at least 50% of range).

- Second, you are grossly undermedicated if you are on thyroid medication and you still have a goiter. Correct dosage usually shrinks a goiter.

- Third, 50 mcg levothyroxine is just the starting dosage. 6 weeks after starting on 50 mcg levothyroxine, full thyroid tests are ran (TSH, FT3, FT4) to evaluate the effectiveness of your thyroid medication. Thyroid medication is increased every 6 weeks until your FT3 and FT4 are high enough to where you are euthyroid and have minimal symptoms. Why hasn't your medication been increased until your symptoms are nearly nonextistent, which is what is supposed to happen?

- Fourth, even if you had your thyroid removed, it's possible you will still have Hashimoto's or another autoimmune disease . You will also still need to be on thyroid replacement hormones for the rest of your life. I'm assuming that this doctor explained this to you.

- Fifth, you are correct to be concerned that since this doctor is not listening to your symptoms and concerns now, that once your thyroid is gone and you are having problems balancing your thyroid hormones (which you definitely will), that this doctor won't listen. He's not listening now and obviously doesn't understand thyroid disease, since he's kept you severely under medicated and is now recommending to remove your thyroid.

What are you doing to manage your autoimmune disease? Many people with Hashimoto's find significant relief in their symptoms by trying a diet that is recommended for autoimmune diseases: gluten free, soy and dairy free.

Most importantly, what are your current FT4, FT3, and TSH, including lab ranges? Since you have been on the starter dose for too long, you still have a goiter and you still have hypo symptoms, you blood results cannot be "OK" or normal.

[Void1234 in reply to ShootingStars]

Hi Shooting Stars, thank you for your reply , when i was pregnant the thyroid issue was found and the full thyroid panel done. Diagnosis of Hashimotos and monitoring then, as i said at start of post it has been monitored and without alot of symptoms mostly aside it being an actual goiter. I have good gluten free, limited dairy, healthy diet with lots of exercise. Happy to share the panels but i generally had felt very well at periods i had the goiter but it has not shrunk and when i asked around trialling increased levels to support my thyroid further, They advised that this may cause then hyper symptoms and it had gone beyond shrinking size.My understanding also is Hashimotos is autoimmune and removal will not resolve the issues it may actually cause more and that is the worry and yes after surgery - i will be taking my tablet everyday. I have also found that Endo’s approach thyroid problems in a ( one size fits all manner) and my local GP looks online for help ! Thus i carry a file of my medical notes with me into GP and Endo office , with all previous medical details and yes challenge them heavily. However as i now find myself in this position with the goiter acting up i am concerned - my next step may be going provate but will the endo’s listen even then?.

[ShootingStars in reply to Void1234]

Hi Void1234. You're welcome. I am almost speechless in how your doctors are mistreating you, especially when you were pregnant. Was a full thyroid panel only done once, when you were pregnant? How long ago was that? Exactly how did these doctors go about "monitoring" your Hashimoto's, and what exactly were they monitoring it for?? You already have the disease and they let your goiter get out of hand.

1) A goiter is a huge sign of thyroid disease. If a goiter grows or remains large while a person is on thyroid medication, it's a sign of improperly treated and undermedicated thyroid disease. Goiters are always received ultrasound to determine if thyroid cancer is present. I'm hoping that since you've had you've goiter for so long, by now you've had it ultrasounded several times to rule out thyroid cancer, nodules have been measured, and you've possibly had nodules biopsied?

2) Hashimoto's is an autoimmune disease that is not monitored, it is treated. Treatment is thyroid hormone replacement for the rest of your life. Even if you had your thyroid removed, you'd be on thyroid hormones for life.

2) Your doctor is grossly misinformed about thyroid medication. 50 mcg is the starting dosage. Hashimoto's is treated with thyroid meds to suppress TSH, raise FT4 and FT3, decrease symptoms AND to assist in reducing thyroid antibodies. Left untreated or undermedicated and antibodies increase. If he had properly increased your medication at 6 week intervals, your goiter would have shrunk. There is never a point where a goiter cannot be shrunk. He never even gave your thyroid a chance to be properly medicated so that your goiter could shrink!

3) Now I am really curious about your levels and how your doctor thinks that increasing your meds would give you hyper symptoms. Are your levels at the top of range? Is your TSH suppressed? Your thyroid hormone levels will be reflective of your thyroid disease and being undermedicated.

If you create a new post "Hashimoto's 11 yrs, goiter, endo wants to remove thyroid", since this is the real question at hand, you'll get a lot more replies than just mine. You will likely be asked to post your blood results and ranges, since that is part of how successful thyroid treatment is determined. I agree with going private, since you're not getting the tests you need, and you might also need to buy your own medication if they won't provide the right levels of medication for you. Other members of this forum might be able to direct you to a new GP and new endo who know how to treat thyroid disease. The ones that you have are severely misguiding you.

[KT77]

Goiter will shrink given the amount of sufficient thyroid hormone. 50 is nothing. When I took 50 my body didn't even notice it. No change at all. I too was told the only way was to have a surgery and apparently thyroid hormone wouldn't help. So I self medicate and goiter is getting smaller and smaller. If you going to have your whole thyroid removed after the surgery you will have to take much higher amount of thyroid hormone than 50mcg. So why not just try it now and see if you can avoid surgery altogether? Honestly when it comes to thyroid doctors could be idiots.

[Void1234 in reply to KT77]

Hi , KT77 what are you self medicating with ? I am in Northern Ireland and getting reviews through Royal which is probably one of the biggest endo units in NI . They are doing another thyroid panel wednesday at clinic and ultrasound. I will get full results can post . My goiter has got noticeable and large and thats probably why they want surgery. A surgeon took a look at it and said it needed removed urgently. Its very frustrating and i am worried as i head towards menopause it will play up further.

[KT77 in reply to Void1234]

I had mild goiter when I was 19 and my endo back in my home country put me on 75mcg which I took for 2 years. Goiter gone and then she took me off the medication. Few years later swelling came back and then it got bigger and bigger. You could see it in long distance pictures. Plus 3 nodules. Biopsies came back ok. I'm 42 now and to see the goiter shrinking I need to take at least 100mcg levo or 1.5 grains NDT. If I lower the dose the goiter simply starts coming back. And all my symptoms with it. I understand you are in difficult situations and hard to decide what to do. Personally if its not thyroid cancer I would try every other option first. If you can get hold of your full thyroid panel and see your ft4 and ft3 levels and post it here ...

[Void1234 in reply to KT77]

Thanks KT77, mine is a diffuse goiter , they picked up some nodules over years in it , but couldnt get a good clear biopsy on. I had a thin swan neck previous and now it looks terrible i think, NDT in NI trying to get it is like pulling teeth a friend has went through this process and with little luck. I believe they will probably do another CT of my neck at clinic to check if goiter pressing on airway and yes i do worry cancer risk. However i also worry-if they remove it fully my body could react to the shock of the removal and i could have bigger problems. Will keep you posted of my clinic this week and my results. I notice it does swell up alot more when im stressed etc but again i feel it is not being correctly monitored.

[Void1234 in reply to KT77]

Also to note i really didnt want to head down the surgery route at all and just feel so upset by it all .

[pingpong]

I'm interested in your post as I have Graves and have had a goiter to the right side of thyroid for many years. I know that when I am very stressed my goiter enlarges and when I feel relaxed it is smaller. I am on Carbimazole but think the time is now right to get full bloods done to see where I am at. I wouldn't go down the surgery route if medication can be got right. Good luck.

[Void1234 in reply to pingpong]

Thanks Pingpong , yes the swelling flare up happens when i am extremely stressed and also if i have a high intake of caffeine interestingly and i would get panic attack symptoms with that it’s horrible and soreness in neck area i believe that is when your antibodies are playing up. Selenium has worked well for me.

I am very nervous of surgery never had a GA before and with thyroid problems and any swellings in the neck area your nervous of anyone aggreviating it and being able to breath after and your windpipe.

[pingpong in reply to Void1234]

I shall take a look at selenium. Just my personal opinion but I would not go for surgery. These "expert" consultants don't know as much as they should and I feel that we are better listening to our bodies and finding what makes us at our best. I am currently reducing my carbimazole (by myself) from 25mg back in August to current of 10mg. I tried 5mg but did not suit, so might try 7.5mg if I can cut the tablet! Anyway, wishing you the best of luck. Don't enter into something because someone says it's what you are going to do. Only do what you want to do XX

[Void1234 in reply to pingpong]

I think my goiter is so large it may be my only choice surgery sadly as i am having symptoms of tightness in throat area when it flares up and until they take it out they cannot rule out cancer 100 % . Some believe selenium will improve conversion of T4 to T3 , i am sure more users on the forum can guide you more on it. Good luck with the meds reduction,

[ShootingStars in reply to Void1234]

I had throat tightness when I had a goiter. My goiter was very, very small and I didn't even know I had it until a physician was palpating my neck and said that my thyroid was swollen. This was before I had a diagnosis of Hashimoto's. I had an ultrasound and then an ultrasound guided biopsy. One nodule was very close to my windpipe and it was difficult to biopsy.

I went on meds (T3 and T4). My nodules reduced in size, and so did my goiter, to the point where there was no visible swelling. For several years I had a yearly ultrasound with no increase in nodule size. Years later, I started getting tightness in my neck again. I knew that my thyroid hormones were probably getting too low so I tested them and I knew I needed to get another ultrasound. Blood tests showed lower than optimal (for me) thyroid hormones and ultrasound showed an increase in the size of my thyroid and in the size of my nodules. My meds were increased until I was optimal once again. The tightness in my throat went away. I followed up with another ultrasound, and my thyroid and nodules had both reduced in size.

If I were in your shoes, I'd do everything in my power to not have my thyroid removed. Your doctors have not even given your body a chance to shrink your thyroid and your nodules because they've kept you under medicated for years. This has effected your emotional well being, as well as compounded your Hashimoto's. They have never treated your disease properly and yet they are wanting to remove your thyroid?!? This is such a crime! I cannot believe doctors like this still have their licenses.

If you self medicated with additional T4 (and possibly T3 if your FT3 indicates) on top of the 50 mcg they give you for even 3 months, your goiter will reduce in size. We don't know how far from optimal your FT3 and FT4 are. If they are at the bottom of range, it will take 3-6 months for you to become optimal. At 6 months you should see significant improvement. At 1 year you will likely not have much of a goiter. IF after a year of being properly medicated you are not satisfied with the reduction in the size of your goiter, then you could consider surgery.

[Void1234 in reply to ShootingStars]

Hi ShootingStars, it is such a frustrating process. The endo told me whilst pregnant when a goiter gets large like mine sticking out of my neck . They are unshrinkable. I did notice mine increased significantly in size when pregnant. When you say self medicate with T4 ? Where do you obtain that? I will post my previous ranges and blood panel i get wednesday.

[ShootingStars in reply to Void1234]

Hi Void1234. That endo is harmful! Pregnancy can trigger thyroid disease, make an existing disease worse and untreated thyroid disease can cause the loss of pregnancy. He should not be attempting to treat thyroid disease patients. Goiters are not unshrinkable.

I've seen people on this site from the UK post about having to purchase their own meds. I'm not sure where they buy them as I'm not in the UK. You can search on here for where to buy T4 or thyroid medication, or you could also create a new post requesting info.

That would be very helpful to post your previous and current blood results. Very good that you just conducted new tests.