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Those with Multinodular Goiter - Questions
My ultrasound showed 5 nodules and endo mentioned at time of biopsy there were more present than ultrasound showed and that they had likely picked the largest to mention. 2 of the nodues they wanted to biopsy were two deep and I couldn't make it through the biopsy. After they poked around in there multiple times, I broke out into a cold sweat and almost threw up and had to make them stop.
I'm curious of those with Multinodular Goiter -
how many nodules did you have?
Were they in both lobes?
Did you have biopsy?
Were any too deep to biopsy?
What was your diagnosis and treatment?
Did your nodules cause any symptoms like nerve pinching, neck stiffness, hoarseness, pain etc.?
For those that had TT, did you have a great relief from those symptoms?
I'm curious of those with Multinodular Goiter -
how many nodules did you have?
Were they in both lobes?
Did you have biopsy?
Were any too deep to biopsy?
What was your diagnosis and treatment?
Did your nodules cause any symptoms like nerve pinching, neck stiffness, hoarseness, pain etc.?
For those that had TT, did you have a great relief from those symptoms?
The answers from redheadaussie are almost identical to mine!
Large nodules on both side. 4.2 largest on left side, 3.7 largest on rt. side.
Several biopsies over several years. Lot's of warning flags including suspicous biopsies, calcifications, sudden growth. One difficult biopsy that caused a "vasovagil" reaction. In otherwords i passed out..... the rest were not difficult.
Patholigy after surgery was no malignancy. Just very large multinodular goiter causing compression.
I didn't realize until after surgery how much stiffness I had been experiencing, as well as difficulty swallowing. I am extremely pleased at how much range of motion I have!
My surgery was january 3rd and I returned to work on Day 5 after surgery feeling pretty darn good. I am having a few aches and pains in my joints.... but overall continue to be relived that the surgery is over and things are moving toward normal!
Large nodules on both side. 4.2 largest on left side, 3.7 largest on rt. side.
Several biopsies over several years. Lot's of warning flags including suspicous biopsies, calcifications, sudden growth. One difficult biopsy that caused a "vasovagil" reaction. In otherwords i passed out..... the rest were not difficult.
Patholigy after surgery was no malignancy. Just very large multinodular goiter causing compression.
I didn't realize until after surgery how much stiffness I had been experiencing, as well as difficulty swallowing. I am extremely pleased at how much range of motion I have!
My surgery was january 3rd and I returned to work on Day 5 after surgery feeling pretty darn good. I am having a few aches and pains in my joints.... but overall continue to be relived that the surgery is over and things are moving toward normal!
Hi, I'll answer your questions in point form.
how many nodules did you have?
Too many to count! One was 4.5 cms
Were they in both lobes?
Yes, the largest was in the right lobe
Did you have biopsy?
Yes, left side, then 5 months later the right side, had 2 FNA on that side.
Were any too deep to biopsy?
One largish one at the very back of the thyroid was very difficult to get to but was able to get a FNA done.
What was your diagnosis and treatment?
Left side was Indeterminate, so hemithyroidectomy done. Had Follicular Adenoma with cellular changes.Also noted in surgery severe damage to thyroid caused by undiagnosed (read, untreated and misdiagnosed!) Hashimoto's. 6 months later, right side showed Hurthle Cells, so that side came out. It was then shown to be a Hurthle cell adenoma with follicular changes.
Did your nodules cause any symptoms like nerve pinching, neck stiffness, hoarseness, pain etc.?
Yes, I had severe discomfort, the large one was forcing my oesophugus to the left, and I could not breathe nor swallow nor talk. To talk I had to take big gulps of air every 3 or 4 words. (think Christopher Reed on his ventilator but worse) No pain, no nerves pinching. Mostly discomfort of the large goiter and the nodules pushing in my throat.
For those that had TT, did you have a great relief from those symptoms?
It was obvious once it came out that the relief was immediate. However the follow up of medication is still an ongoing saga. I cannot express how wonderful it was to wake up from surgery and breathe easily!
Hope that helps!
how many nodules did you have?
Too many to count! One was 4.5 cms
Were they in both lobes?
Yes, the largest was in the right lobe
Did you have biopsy?
Yes, left side, then 5 months later the right side, had 2 FNA on that side.
Were any too deep to biopsy?
One largish one at the very back of the thyroid was very difficult to get to but was able to get a FNA done.
What was your diagnosis and treatment?
Left side was Indeterminate, so hemithyroidectomy done. Had Follicular Adenoma with cellular changes.Also noted in surgery severe damage to thyroid caused by undiagnosed (read, untreated and misdiagnosed!) Hashimoto's. 6 months later, right side showed Hurthle Cells, so that side came out. It was then shown to be a Hurthle cell adenoma with follicular changes.
Did your nodules cause any symptoms like nerve pinching, neck stiffness, hoarseness, pain etc.?
Yes, I had severe discomfort, the large one was forcing my oesophugus to the left, and I could not breathe nor swallow nor talk. To talk I had to take big gulps of air every 3 or 4 words. (think Christopher Reed on his ventilator but worse) No pain, no nerves pinching. Mostly discomfort of the large goiter and the nodules pushing in my throat.
For those that had TT, did you have a great relief from those symptoms?
It was obvious once it came out that the relief was immediate. However the follow up of medication is still an ongoing saga. I cannot express how wonderful it was to wake up from surgery and breathe easily!
Hope that helps!
Hi, I have several goiters, Hot nodules. Very tired, losing hair, gaining weight and very dry skin. I have low TSH and slightly above normal Free T3. I seem to get worse as it goes. I have been fighting with this for nearly 4 years now. My goiters/nodules are also benign, however, I am just ready for them to get my thyroid out. How do you convice the doctor to take it out?!
Hi oscarmaya, You kind know my story, but I too am looking for other people with Multinodular Goiter. I have "Toxic" Multinodular Goiter. 6 "Toxic" Cysts the largest one about the size of a small marble. "A 0.6 cm x 0.4 cm hypoechoic and I believe predominately cystic nodule ..." All considered too small to biopsy.
This diagnosis was that I was Hyper, however all my symptoms are Hypo. TSH was low and that is about all the Endo was looking at along with FT4 was on the high end. (my blood work and Ultrasound results are posted in my Journals)
So these cysts I have are called "Toxic" because they operate on their own, uncontrollably producing as much or as little hormone as they wish, probably depending on how much iodine and tyrosine I have have in my diet to enable them to go whacky. I am on Methimazole they put me on 5 mg AM and 5 mg PM but 10 mg of the stuff a day made me useless could not function at all sleeping neck swelling more, muscle aches, sleep problems, more weight gain etc. So it woudl seem to me that this medication with my symptoms don't mix. In any case, early on I cut back to only 5 mg of the Methimazole and radically changed my diet to exclude Iodine and Tyrosine as much as possible. Cut out all fast food. cut cafeen way way down etc. That helped a bit but I am no better off.
My Endo wanted to do an RAI Ablation to kill off the nodules and possibly the thyroid and whatever else might get affected. The treatment option was Surgery to remove the thyroid. I did not care for either option so I opted to take the medication while I study the whole scenario and make some sensible changes to my diet etc.
In your case though, If I remember right you had some solid nodules ?
Does anyone else have Toxic nodules?
McMIllan
Snipit::
Opinion: The thyroid gland is enlarged. Multiple thyroid nodules are present, none of which meets Society of Radiologist’s in Ultrasound criteria for strong consideration to fine needle aspiration biopsy and at least three of which appear to contain colloid.
Endo Diagnosis:
• Hyperfunctioning thyroid nodule (toxic adenoma, toxic multinodular goiter, Plummer's disease)
This diagnosis was that I was Hyper, however all my symptoms are Hypo. TSH was low and that is about all the Endo was looking at along with FT4 was on the high end. (my blood work and Ultrasound results are posted in my Journals)
So these cysts I have are called "Toxic" because they operate on their own, uncontrollably producing as much or as little hormone as they wish, probably depending on how much iodine and tyrosine I have have in my diet to enable them to go whacky. I am on Methimazole they put me on 5 mg AM and 5 mg PM but 10 mg of the stuff a day made me useless could not function at all sleeping neck swelling more, muscle aches, sleep problems, more weight gain etc. So it woudl seem to me that this medication with my symptoms don't mix. In any case, early on I cut back to only 5 mg of the Methimazole and radically changed my diet to exclude Iodine and Tyrosine as much as possible. Cut out all fast food. cut cafeen way way down etc. That helped a bit but I am no better off.
My Endo wanted to do an RAI Ablation to kill off the nodules and possibly the thyroid and whatever else might get affected. The treatment option was Surgery to remove the thyroid. I did not care for either option so I opted to take the medication while I study the whole scenario and make some sensible changes to my diet etc.
In your case though, If I remember right you had some solid nodules ?
Does anyone else have Toxic nodules?
McMIllan
Snipit::
Opinion: The thyroid gland is enlarged. Multiple thyroid nodules are present, none of which meets Society of Radiologist’s in Ultrasound criteria for strong consideration to fine needle aspiration biopsy and at least three of which appear to contain colloid.
Endo Diagnosis:
• Hyperfunctioning thyroid nodule (toxic adenoma, toxic multinodular goiter, Plummer's disease)
I was diagnosed with a multinodular goiter last Fall. I requested lab results just recently so I could better keep track of things. The report tells me that there are multiple, less than 5 mm, cystic nodules throughout both thyroid nodules. The thyroid gland is mildly enlarged. I was put on Synthroid, 125 mcg. I did not have a biopsy although I'm not sure why. I have had symptoms of low thyroid for a few years now, but I attributed them to perimenopause. My periods were coming every 3 weeks instead of 4, I was tired all the time, I couldn't get things done. I felt depressed at times too, which was never the case before. My hair would also not perm. As if it was too dry and would become damaged instead of taking curl. After being on Synthroid since October, I am feeling better. More energy. I sleep through the night, whereas before I kept waking up. My bowels are more regular (sorry) and my periods are back ato 4 weeks, but I have noticed a couple days between some slight bleeding. Maybe at the 2 week interval. Please keep us updated as you go through this. It's all new to me too.
I "had" a multinodule goiter...too many to count i guess. My largest was 3.3cm, but due to the cells that were biopsied, i was recommended to have a TT (although the biopsies were all benign). It's a great possibility that nodules are missed when biopsied which is why a Thyroidectomy is recommended.I had no symptoms except for uncomfortability when wearing anything around my neck. I had no problems thus far with the surgery (4 weeks post)...I started synthoid last week and so far so good (although it takes time to kick in). Everyone including the doc's are saying that as long as the medication is at the right dose, a person shouldn't have any symptoms...Hope this helped.
I have multinodular goiter also...
I have 3 nodues, one on the right which was .2cm under the cut off for biopsy, then two on the left that were slightly smaller. My endo said we would just reassess at my next ultrasound and if they didn't shrink then they would bio...luckily they all shrunk some
As far as the diagnosis, it was hypo with multinodular goiter...they started me on 75mcg of synthroid, and we have been working to find a good dosage that actually lets me feel better.
When I first noticed the nodules i felt like my neck was "getting bigger" or "swollen" and I did notice that I was getting more hoarse than normal. Occasionally I had sore throat pain.
Hope that helps some...good luck
I have 3 nodues, one on the right which was .2cm under the cut off for biopsy, then two on the left that were slightly smaller. My endo said we would just reassess at my next ultrasound and if they didn't shrink then they would bio...luckily they all shrunk some
As far as the diagnosis, it was hypo with multinodular goiter...they started me on 75mcg of synthroid, and we have been working to find a good dosage that actually lets me feel better.
When I first noticed the nodules i felt like my neck was "getting bigger" or "swollen" and I did notice that I was getting more hoarse than normal. Occasionally I had sore throat pain.
Hope that helps some...good luck
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