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Making an important thyroid decision

belize44

Senior Member
Messages
1,662
I've been diagnosed as having a cyst and a nodule on my thyroid. They have been there for over ten years. Subsequent exams have shown that while they are both benign, they are growing. I have also been told I have a goiter. My neck feels swollen all the time and sometimes swallowing is difficult. My thyroid levels test within normal ranges, yet I have all the classic symptoms of hypothyroid syndrome.

The major concern at this point is that my mother died from thyroid cancer. I am seriously considering having my thyroid removed as a prophylactic measure. In the meantime I have ordered some herbs that have been reported as beneficial for shrinking cysts and dissolving nodules. I would appreciate input from others who may have had similar issues, such as what you may have tried and any success stories? I really don't want to have my thyroid removed, but in view of my family medical history I feel that I should.
 

Gingergrrl

Senior Member
Messages
16,171
@belize44 I am so sorry to hear that. Are you seeing an endo who is a thyroid expert and if so, what does he or she suggest? Did you have an ultrasound or other testing if your thyroid which showed it was all benign? I have Hashimotos but do not have any nodules or growths on my thyroid. I am hoping others can advise you here. Best wishes moving forward.
 

caledonia

Senior Member
I've been diagnosed as having a cyst and a nodule on my thyroid. They have been there for over ten years. Subsequent exams have shown that while they are both benign, they are growing. I have also been told I have a goiter. My neck feels swollen all the time and sometimes swallowing is difficult. My thyroid levels test within normal ranges, yet I have all the classic symptoms of hypothyroid syndrome.

The major concern at this point is that my mother died from thyroid cancer. I am seriously considering having my thyroid removed as a prophylactic measure. In the meantime I have ordered some herbs that have been reported as beneficial for shrinking cysts and dissolving nodules. I would appreciate input from others who may have had similar issues, such as what you may have tried and any success stories? I really don't want to have my thyroid removed, but in view of my family medical history I feel that I should.

For semi-mainstream info, go to http://www.stopthethyroidmadness.com/ for info. They can tell you about which labs to get, and what meds to take. Basically you need a full thyroid panel, not just TSH, and then a natural hormone, not synthetic.

My mother also had ME/CFS and also had nodules and several surgeries for those. Then later, thyroid cancer, which was successfully treated with radioactive iodine (thyroidectomy). However, she developed several other cancers after that and eventually died of cancer.

I was diagnosed with autoimmune thyroiditis in 2001 (not too long after becoming sick with ME/CFS). My TSH was normal, while my thyroid antibodies were sky high. It took a good doctor to catch this. I was on Armour Thyroid for 13 years. I haven't had nodules.

However, after some time on methylation treatment, my thyroid is healed. I no longer need medication, and all my labs are normal.

What I have found out is there are several factors which will impact your thyroid.

1) mercury - I have had all my mercury fillings removed and detoxed the mercury via methylation treatment.

2) lack of iodine (this is why you have a goiter - the thyroid is enlarging looking for iodine) - you can do iodine supplementation. I never tolerated very much of it. At this point, I just use iodized salt for maintenance.

3) iodine-mimicking substances clogging the iodine receptors, so you can't absorb iodine - these are: bromide, chlorine and fluoride. Bromide is in bread (they used to put iodine in bread, but not any more). Bromide is banned in the UK. Chlorine and fluoride are in water. I don't eat bread and I filter my water.

4) lack of methylfolate - this can be due to genetics, and environmental factors such as diet, lead and mercury. Methylation treatment will take care of this.

5) adrenal "fatigue" - the thyroid and adrenals work together, so one will affect the other. I believe this is due to lack of glutathione, which causes a signalling problem for the adrenals, not actual fatigue of the organ. Methylation treatment should also help this.

Poor methylation will also cause the symptoms of ME/CFS and may also lead to cancer. Methylation treatment should be helpful for your thyroid, adrenals, ME/CFS and lower your risk of cancer.

If you're wondering what methylation is, check out the Methylation Made Easy videos linked in my signature below.

So my suggestion would be to do your homework before having your thyroid removed!
 

belize44

Senior Member
Messages
1,662
@belize44 I am so sorry to hear that. Are you seeing an endo who is a thyroid expert and if so, what does he or she suggest? Did you have an ultrasound or other testing if your thyroid which showed it was all benign? I have Hashimotos but do not have any nodules or growths on my thyroid. I am hoping others can advise you here. Best wishes moving forward.
Yes, I have had Ultrasound, biopsy and an eval with an endo who said that if I elected to have surgery, the fact that my mother had serious issues with her thyroid would make me eligible for the surgery. They really had no other options but to watch it. It's been watched for years, and it keeps getting bigger, alas.
 

Gingergrrl

Senior Member
Messages
16,171
I was diagnosed with autoimmune thyroiditis in 2001 (not too long after becoming sick with ME/CFS). My TSH was normal, while my thyroid antibodies were sky high. It took a good doctor to catch this. I was on Armour Thyroid for 13 years. I haven't had nodules. However, after some time on methylation treatment, my thyroid is healed. I no longer need medication, and all my labs are normal.

Poor methylation will also cause the symptoms of ME/CFS and may also lead to cancer. Methylation treatment should be helpful for your thyroid, adrenals, ME/CFS and lower your risk of cancer.

@caledonia I was also diagnosed with autoimmune thyroiditis around the time I was diagnosed with ME/CFS. My TSH was right on the border 3.8 but my antibodies were sky high. I've been on low dose Armour for about 10 mos but temporarily off b/c of the over-methylation incident and awaiting the results of latest thyroid blood test. I am hoping that once I re-start methylation at a lower dose and find the right combo that works for me, that I will be able to stop taking Armour permanently like you. Did you mean that your two Hashi's antibodies that were sky high also lowered to a normal level?

Yes, I have had Ultrasound, biopsy and an eval with an endo who said that if I elected to have surgery, the fact that my mother had serious issues with her thyroid would make me eligible for the surgery. They really had no other options but to watch it. It's been watched for years, and it keeps getting bigger, alas.

@belize44 It sounds like you have done a lot of testing with your doctor and was wondering if you have gone for a second opinion before doing something major like surgery? Also, do you do a methylation protocol? I am just barely starting one but Caledonia is an expert and it sounds like this may be another option to pursue. Does your doctor give you any percentages of the risk of it becoming cancerous without the surgery? I am so sorry you are in this awful situation.
 

belize44

Senior Member
Messages
1,662
No, the doctor didn't give me any percentages. I find it frustrating when they say that there is nothing that they can do except watch it. They are only willing to remove the thyroid, but not help me heal it, unfortunately. And oh yes - this was my second opinion, unfortunately. I am going to look into the methods mentioned here, though!
 

belize44

Senior Member
Messages
1,662
I have been visiting the links that you provided, Calednonia. I am also feeling much more hopeful. Now I can see that there are some actions I can take. Thanks!
 

caledonia

Senior Member
@caledonia I was also diagnosed with autoimmune thyroiditis around the time I was diagnosed with ME/CFS. My TSH was right on the border 3.8 but my antibodies were sky high. I've been on low dose Armour for about 10 mos but temporarily off b/c of the over-methylation incident and awaiting the results of latest thyroid blood test. I am hoping that once I re-start methylation at a lower dose and find the right combo that works for me, that I will be able to stop taking Armour permanently like you. Did you mean that your two Hashi's antibodies that were sky high also lowered to a normal level?

Yes.

Just so you know what to look out for - I was starting to get hyperthyroid type symptoms while I was on the medication. My notes say I was feeling anxious, sweating, having a somewhat elevated heartrate of 80 (normally 70 or below), and also a pounding heartbeat and sometimes heart pain. Not sleeping very well. Also ringing in the ears and a tingling feeling in my lower arms/hands and lower legs. I also had a scary bout of skipping heartbeats.

So we stopped the medication for a week and then tried cutting the dose in half but I was still having symptoms. So then we dropped the medication and I started to feel better.

We then retested with a full thyroid panel (not just TSH) after several months. All of my antibodies are normal, indicating no more autoimmune thyroiditis (a.k.a. Hashimoto's thyroiditis). TSH, T3, T4, and reverse T3 are also all normal.
 

belize44

Senior Member
Messages
1,662
Yes.

Just so you know what to look out for - I was starting to get hyperthyroid type symptoms while I was on the medication. My notes say I was feeling anxious, sweating, having a somewhat elevated heartrate of 80 (normally 70 or below), and also a pounding heartbeat and sometimes heart pain. Not sleeping very well. Also ringing in the ears and a tingling feeling in my lower arms/hands and lower legs. I also had a scary bout of skipping heartbeats.
That is exactly what I am experiencing now! I am unable to sleep deeply because of my heart pounding, skipping beats and actually hurting.
 

caledonia

Senior Member
That is exactly what I am experiencing now! I am unable to sleep deeply because of my heart pounding, skipping beats and actually hurting.

I can't believe that some doctor wouldn't be willing to trial a thyroid med based on symptoms alone. Surely if you did the right labs, something would show up.

I think it's criminal that you've been allowed to go untreated for 10 years, until now it's so obvious they might want to do surgery.

Maybe you would be better off with a functional medicine doctor or naturopath. They would be more likely to prescribe Armour or another natural thyroid hormone anyway.
 

belize44

Senior Member
Messages
1,662
I have asked my doctor to let me try thyroid medications, but he says that if my labs are showing normal levels, the medication could cause a heart attack. I am very symptomatic, but they seem to only want to go by the labs which from what I have read on the links you provided, are not very thorough tests anyway. My insurance won't pay for naturopaths, or anything but traditional stuff (Medicare). Also although removing mercury fillings and chelation sounds promising, once again I haven't the means to pay for it. Seems that insurance willingly pays for invasive and unnecessary surgeries, but don't give a hoot about prevention and healing. :(
 

Gingergrrl

Senior Member
Messages
16,171
@Belize, Wow, I misunderstood and thought you were already on thyroid medicine! You should look at the Stop the Thyroid Madness website (if you haven't already) and many people have TSH right on the border who can benefit from Armour. I take 1/2 of the smallest dose of Armour 7.5 mg and it actually helped my tachycardia vs. making it worse.

I had heard of people many yrs ago taking high doses of thyroid for weight loss which can cause heart attacks but that is not what we are talking about in your case! I'm surprised your doctor would say that unless there is something more going on? I forgot, have you had the Hashimoto's antibodies tested? Because if they are high, even if TSH on the border, Armour can help the situation from worsening per my Endo.

So, sorry you are getting the run-around from your doctors.
 

Gingergrrl

Senior Member
Messages
16,171
Yes. We then retested with a full thyroid panel (not just TSH) after several months. All of my antibodies are normal, indicating no more autoimmune thyroiditis (a.k.a. Hashimoto's thyroiditis). TSH, T3, T4, and reverse T3 are also all normal.

@caledonia Wow, that is incredible and what I am also hoping for! How long were you doing methylation before your Hashimoto's reversed?
 

belize44

Senior Member
Messages
1,662
@Belize, Wow, I misunderstood and thought you were already on thyroid medicine! You should look at the Stop the Thyroid Madness website (if you haven't already) and many people have TSH right on the border who can benefit from Armour. I take 1/2 of the smallest dose of Armour 7.5 mg and it actually helped my tachycardia vs. making it worse.

I had heard of people many yrs ago taking high doses of thyroid for weight loss which can cause heart attacks but that is not what we are talking about in your case! I'm surprised your doctor would say that unless there is something more going on? I forgot, have you had the Hashimoto's antibodies tested? Because if they are high, even if TSH on the border, Armour can help the situation from worsening per my Endo.

So, sorry you are getting the run-around from your doctors.
I am not sure if my antibodies were tested. I had a lot of blood work done recently, and I don't recognize a lot of the abbreviations. There were some T readings that I recognized, but they test within "normal" limits. I know that I am hypothyroid, because I have the classic symptoms, some of which are hair loss, thinning hair, half my eyebrows gone, weight gain although I don't eat much, etc. Does anyone know what the abbreviations would be for thyroid antibodies?
 

Gingergrrl

Senior Member
Messages
16,171
@belize44 Yes, one is called anti thyroid peroxidase antibody (TPO) and the other is called anti thyroglobulin antibody (not sure of the abbreviation?!)
 
Messages
2,565
Location
US
A lot of patients regret having their thyroid removed. Google for forums and blogs, or see Facebook groups.

I also recommend stopthethyroidmadness.com and most of us have to self-medicate without a doctor, or get a better doctor.
 

belize44

Senior Member
Messages
1,662
A lot of patients regret having their thyroid removed. Google for forums and blogs, or see Facebook groups.

I also recommend stopthethyroidmadness.com and most of us have to self-medicate without a doctor, or get a better doctor.
I have been hearing the same advice, about just watching my thyroid or having it removed, from not only my GP but from two different endocrinologists, and this was even at Mayo clinic, which seriously disappoints me because they gave me such good advise about my autonomic issues.
 

caledonia

Senior Member
@caledonia Wow, that is incredible and what I am also hoping for! How long were you doing methylation before your Hashimoto's reversed?

I'd say about a year and a half. I spent about 3 months of that on a CBS protocol prior to getting into methylfolate and B12. Then some time after that I waffled around for about 6 months before I figured out I needed potassium. Then after that, positive things started happening. So if you took out those two roadblocks, it was really more like 9 months.
 

Gingergrrl

Senior Member
Messages
16,171
@caledonia thank you for the info. I do take Potassium every day (in capsules and additional in Salt Stick & Nuun) so should be okay in that regard. I forgot what CBS protocol means (I know I asked before so I will look it up again- no worries) and I hope to be able to re-start methylation soon and some day reverse my thyroid issues like you did.