Recently, I interviewed Nanette, and we discussed the long-term medication use, her treatment with propylthiouracil (PTU), dietary changes, the importance of stress management, why we need to address underlying causes like insulin resistance and inflammation, my approach to testing and lifestyle modifications, and more. If you would prefer to listen to the interview you can access it by Clicking Here.
Dr. Eric Osansky:
Welcome, everyone. I am very excited to do a Save My Thyroid audit. We are going to be talking to Nanette here on her experience and personal journey with toxic multinodular goiter. How are you doing today, Nanette?
Nanette:
I’m doing really well, thank you. Thanks for having me.
Dr. Eric:
It’s a pleasure. Looking forward to this. If you could give a little bit of your background. How long ago were you diagnosed with toxic multinodular goiter?
Nanette:
I’m 63. When I was 16, I had a nodule on my thyroid. My dad noticed it. This is 1978, and I had that removed surgically. I went 10+ years with no thyroid treatment at all. Then I hit 30, and I got another nodule. I had that one removed. I had most of my thyroid, but I had two surgeries with two nodules removed. At 30, they put me on some Synthroid. I had been back and forth for a little while taking the Synthroid. I was euthyroid. Then I was off all thyroid medication.
Almost 20 years ago now, I had a change. I felt bruised, like I had been in a fight or something. I couldn’t figure that out. Then I went to the doctor, and they said, “Oh, I think you’re hyperthyroid.” I was moving at the time. It turns out for the last 20 years, I’d had toxic multinodular goiter. Really, only the last 10 years, I had been treated for that.
I tried methimazole, which made me crazy, not crazy but really got my heart rate up and going. My local doctor didn’t want to try PTU, so I went down to Phoenix and found a doctor there who wanted to try PTU. I have been on that for five years now almost.
I listened to one of your podcasts, which made me real nervous, that that’s not good. Just yesterday, I saw the doctor, and she said I’m really on a pediatric dose. Just enough to calm my thyroid enough. I’m actually feeling pretty good.
Nicely, she said yesterday, “I really don’t want surgery on you.” A lot of doctors are resisting it because I’ve had two surgeries with scar tissue. That inadvertently saved my thyroid. I had more than one doctor say, “Too bad they didn’t remove your whole thyroid.” I still have it. It does work a bit. If I don’t take the PTU, my TSH goes really low, like .002. I get heart palpitations, which is really my biggest and only symptom.
I’ve had sonograms every year. Yesterday, I had one. My nodules are stable. I will follow up in a year. I asked about the radio ablation. She said, “Well, you have at least three nodules we’d have to do that to, and that’s a little invasive. You’re doing well.” My liver enzymes have been well, so so far, I’m sticking with what I have. I’m hoping to learn from you.
Dr. Eric:
Wonderful. Thank you for sharing your background. We were chatting a little bit before I pressed Record about the radiofrequency ablation, how they didn’t have that years ago, and that’s why you got the individual nodules removed.
I also mentioned how they usually don’t do that, so you got lucky that they didn’t remove your entire thyroid gland. At least these days, I don’t hear much about doing even partial thyroidectomy, where they remove half the thyroid gland, let alone the single nodule. That’s not great that you had the nodules, but it’s great that they didn’t remove the entire thyroid gland.
As far as PTU, I mean, everything is risk versus benefit. When I talk about medication on the podcast, I try not to talk too negatively. Sometimes, I do get into the research about some of the negative consequences. Obviously, with both methimazole and PTU, it can put stress on the liver. Everybody’s different. That’s why there’s liver panels available to monitor that. I know you’ve been given the liver panels.
You mentioned you’re on a pediatric dose. If you’re tolerating it well, you don’t want to be on that forever, but for now, if it means preserving the health of your thyroid gland while trying to figure out what you can do, which is why we’re chatting here. Some endocrinologists will recommend surgery or radioactive iodine right away if someone is unable to tolerate methimazole. It sounds like you had to go to Phoenix to get that prescription. They were resistant in your area to switch you to PTU.
Long story short, I’m glad that you were able to get the PTU, so at least, it buys you time, and everything seems to be stable. Hopefully, I will give you some helpful advice to put you on that road to recovery.
As far as you know, you have been dealing with it for a long time. Maybe not toxic multinodular goiter specifically, but having nodules. That all started when you were 16. Do you know of any other family members with a thyroid condition?
Nanette:
Definitely. My grandmother, my dad’s mother, had the same thing. Multinodular goiter. Her daughter, my aunt Linda, she had thyroid cancer and had her thyroid removed. Then her daughter, my first cousin, she had free thyroid cancer and had her whole thyroid removed. She is a little younger than me. Family history there definitely.
Dr. Eric:
Okay. Has the PTU pretty much controlled all your symptoms, or are you experiencing any currently?
Nanette:
It has helped my symptoms very much. I have tried to wean myself off of it before with the doctor. My symptoms just came roaring back, or I feel my heart palpitations lying in bed, thinking, “Oh no.” I can’t hold a glass of water because it shakes. It definitely helps. That’s been my only symptom, the heart palpitations. I’m just thumping.
Dr. Eric:
Is it occasional or pretty much all the time?
Nanette:
Now I’m good. Occasionally, I feel my heart fluttering in my chest.
Dr. Eric:
Before being on the PTU, that was the main symptom.
Nanette:
Yes. Tremors in my hands as well.
Dr. Eric:
Okay. I’m glad the PTU is helping with that.
My next question, looking into the future, if you had a crystal ball, ideally, what would you like your health to be like six months from now?
Nanette:
I would like to be off the PTU totally. That would be nice. I have been trying your Level 3 diet. I am about five weeks into that. The doctor was familiar with that. My endocrinologist yesterday mentioned some people try that. She didn’t elaborate too much.
I’d love for my nodules to go away and me to get off the PTU. That would be wonderful.
Dr. Eric:
Okay. The doctor was a little bit supportive of the diet, it sounds like. Many are not supportive and just say it’s a waste of people’s time. That was the endocrinologist that you’re seeing?
Nanette:
Yeah, down in Phoenix.
Dr. Eric:
That’s great that the endocrinologist wasn’t just dismissive of diet because many of them are. Obviously, it’s great that you’re following a Level 3, which is like an AIP, modified autoimmune protocol. You don’t have history of autoimmunity. On the application, you did say something about in the past Hashimoto’s, but all of your current antibodies seem to be negative, correct?
Nanette:
Right. I was told when I was first diagnosed at age 16, it was an autoimmune thing. Then I heard the word “Hashimoto’s” somewhere in the next 20 years. I really never paid attention to thyroid antibodies until you mentioned them. I guess I don’t have Hashimoto’s. If I did, it’s gone.
Dr. Eric:
It is possible. It’s also possible that they misdiagnosed you. The only way to know is by looking at the blood test years ago. If you had elevated thyroid antibodies back then, those are the antibodies for Hashimoto’s. It is possible that at least from what we see, you no longer have them. There is always the possibility of false negative antibodies, so the blood test is not perfect. That’s something to think about.
Also, one question I almost forgot to ask you until now: How did you find out about me, Nanette?
Nanette:
I think I had signed up for a health summit, and I found Dr. Amie Hornaman. I looked at her website and sent her a note. She said, “I work with hypothyroid. You need to talk to Dr. Eric. He works with hyperthyroid people,” which is rare. Most people are hypo/Hashimoto’s. To find someone who concentrates on hyperthyroidism. That’s how I found you. I signed up for your Thyroid Boot Camp. I bought your book. Here I am.
Dr. Eric:
I’m glad Dr. Amie referred you to me, and you signed up for the live event that I had not too long ago, the Thyroid Healing Diet Boot Camp, and got my book. Wonderful.
My next question: Do you feel like there is anything preventing you from reaching your goals, from getting off the PTU, from restoring your health? Any roadblocks?
Nanette:
I don’t think so. The diet is a little tough. I miss potatoes and rice and bread. That’s harder than I thought.
I don’t think so. It’s really hard to believe how much I have learned in the past month and a half. I’ve paid attention to my lab results. I’ve had thyroid problems for 46 years. I don’t think there’s anything stopping me from reaching my goals.
Dr. Eric:
Okay. Awesome. Have you done comprehensive testing at all besides getting thyroid panels? I’m sure you’ve gotten CBCs, metabolic panels, maybe lipid panels. I don’t know if you’ve had Vitamin D, iron panels, other types of blood tests.
Nanette:
Yes. Those are all good. I had follicular lymphoma 10 years ago. I was diagnosed with that. I don’t know where that came from; it just showed up. My bloodwork is followed closely, especially my liver, because the lymphoma was in my spleen and bone marrow. I was a bit nervous about taking some PTU because that can affect your liver. Everything has been very good. My panels are great.
My immune system is a little squished because of the chemo, which I had because my spleen was so enlarged. My bone marrow was affected greatly from the non-Hodgkins lymphoma. Besides having a low IgG level, my panels have been good on everything.
I take Vitamin D. I’m out in the sunshine. I live in Arizona. I’m outside every day. I go for walks every day. I try to do all the good stuff.
Dr. Eric:
I’m sure they have done fasting glucose as part of a metabolic panel. Have you looked at hemoglobin A1C and fasting insulin in the past?
Nanette:
I don’t think I’ve ever had that done. My glucose has always been good. Did I get that done?
Dr. Eric:
Well, if you read some of the materials on my website as well as the podcast, when I speak about goiter and nodules, whether it’s multinodular goiter or just goiter without the nodules or just nodules without the goiter- In your case, it’s toxic multinodular goiter. There is a few different factors.
One could be blood sugar imbalances, such as insulin resistance. Fasting glucose of course is usually tested as part of a metabolic panel. That is far from a perfect test. Hemoglobin A1C is the average blood sugar over 2-4 months. A lot of doctors do test for hemoglobin A1C, but most don’t test for insulin, which could also be helpful.
If someone has maybe a hemoglobin A1C that doesn’t look too bad—it might be on the higher side but within range—then we want to see insulin ideally less than 5 in a fasting state. If we see that in double digits, or even an 8 or 9, and the hemoglobin A1C is creeping up, like 5.5, 5.6, which is still within range, but on the higher side, it’s not officially an insulin resistance or type 2 diabetes or prediabetes diagnosis until someone’s A1C is 5.7.
Most endocrinologists, if someone has a hemoglobin A1C of 5.5 and a fasting insulin of 9, which they usually don’t test, they usually won’t say anything. That usually is not optimal when it comes to blood sugar. That could at least be a factor. Doesn’t mean it’s the only factor. That is something to look into.
Yeah, I would at the very least test those two markers and see what those show. Hemoglobin A1C ideally, you want that less than 5. Even if it’s 5.1, 5.2, that’s still really good. If insulin is less than 5 or even honestly 5 or 6, it’s still not too bad. If you see those numbers on the upper end, or at least hemoglobin A1C on the upper end of the range, 5.5, 5.6, and insulin above a 7, that’s when you might suspect blood sugar imbalances.
Nanette:
Okay, I’ll follow up on that, thank you. I never thought about it.
Dr. Eric:
You’re welcome. Another potential factor when it comes to nodules and goiter, problems with estrogen metabolism. I think you said you’re 63. It’s been a long time since you cycled probably. As we get older, both men and women’s hormones are going to decrease.
You still have some estrogen. Even if you have a smaller amount of estrogen, which you do compared to 20/30 years ago, you still have to detoxify that estrogen. You still have to metabolize it. Some people have problems metabolizing the estrogens.
Do you have any history of uterine fibroids, ovarian cysts, endometriosis, any breast cancer? I know you mentioned follicular lymphoma, but not breast cancer history or fibroids or cysts?
Nanette:
Not in me, no. I had some endometriosis toward the end. Didn’t bother me. I should check for estrogen metabolism?
Dr. Eric:
Something to consider. The problem with testing for it is you can’t do it through the blood. There is a dried urine test called the DUTCH test. There are a few dried urine tests; the DUTCH is the most well-known test that looks at adrenals, hormones, but the big thing is looking at how you metabolize your estrogen. With your history and background, you might want to consider doing that type of test.
Nanette:
Will do, thank you.
Dr. Eric:
There is more information. Even if you just do a random search, you’ll see a lot of practitioners who do that test. There is a lot of information out there. Those are two areas. Inflammation in general could be a factor.
There is the controversial iodine. Too much iodine isn’t good, but too little iodine can cause problems. This can lead to nodules and/or goiter. With toxic multinodular goiter, you want to be careful. Have you tinkered at all with iodine on your own?
Nanette:
No. It’s in a multivitamin I take.
Dr. Eric:
Sometimes, the iodine can worsen, like exacerbate the toxic multinodular goiter. That’s where you might want to consider working with someone if you look into that. Even doing something like DUTCH testing, maybe consider working with a functional medicine practitioner.
With iodine, there is urinary testing if you were interested in doing that. Blood testing is not too accurate. Even urinary testing is not perfect. There is a lab, Hakala Labs. They have different types of urinary iodine tests. Iodine spot test is what a lot of people choose.
There is also the loading test, but that involves taking a 50mg tablet of potassium iodide, which many people do fine with, but some people might not.
Usually, with patients, I start with blood sugar, problems with estrogen metabolism. Most of the people I’m working with have some type of inflammation. The iodine, it depends. Some people are gung-ho and hear a lot about iodine and want to look into it. Others, based on what I say, they might be a little bit nervous.
I personally had a good experience with iodine, so I am not anti-iodine. I have worked with a lot of patients over the years, and I have seen both good and bad. You just never know how someone is going to respond. I can’t say it’s something I test for in everybody but wanted to make you aware of it.
Nanette:
Okay.
Dr. Eric:
Diet and lifestyle. You are following a Level 3 diet, which is more autoimmune-focused. It won’t hurt for you to do that. You said you have been following it for five weeks?
Nanette:
Yes.
Dr. Eric:
You can keep that up. A lot of times, for non-autoimmune thyroid conditions like yours, I might recommend AIP, if you’re having gut issues. Otherwise, a Level 2, which is a modified paleo diet. You have already followed it for five weeks, so if you want to continue for 2-3 months, like another 3 weeks, or make it a full 90 days, that’s fine. It won’t cause harm to do that. But if you’re finding it really difficult and challenging, and you wanted to transition to a regular paleo diet, a Level 2 diet, as I talk about in my book, you definitely could do that.
Nanette:
I get to move up then! Yay!
Dr. Eric:
There you go. You got my book and attended the Thyroid Healing Diet Boot Camp. If you do that, you might still want to do the reintroductions, which I talk about in the book, rather than just make the transition. Since you have already done it for five weeks, it’s up to you.
Nanette:
I’ll go back to the book.
Dr. Eric:
Diet and lifestyle for any thyroid/autoimmune thyroid condition is important. You’re already doing everything you can from a dietary standpoint, it sounds like.
Are stress and sleep okay on your end?
Nanette:
Yeah, I’m good there. My husband and I are retired. We do a lot of volunteer work. We do a lot of church work. I’m at a stress-free side of life. My kid is all grown up; he’s good.
Dr. Eric:
I can’t advise you to get off the PTU, but first of all, what we mentioned here, hopefully by addressing the cause of the problem, over time, you will see changes.
It can be tough with nodules. I can’t say everybody who has toxic multinodular goiter, moreso the nodule part, all the nodules shrink and go back to normal on an ultrasound. But everybody is different. We do sometimes see some really good changes. Other times, we’ll see changes, but it depends on the person.
We do get people with both Graves’ and toxic multinodular goiter to the point where they don’t need it. The only way to know is by incorporating these changes. If you don’t need the PTU, eventually the numbers on the thyroid panel should be hypo. Then the doctor should gradually wean you off.
You might have heard me talk about natural agents like bugleweed and L-carnitine. Have you tried those at all?
Nanette:
I have not.
Dr. Eric:
That’s something to consider. It depends on the person. If someone is taking methimazole or PTU, and they’re tolerating it well, and they’re okay with taking it, there will be people who will continue taking it.
Your situation is a little bit different because you have been on it for five years and are tolerating it well. If you have to take it for good, you will, but if there is an alternative, then you’d rather do that.
The thing about bugleweed and L-carnitine. A couple things actually. They’re also not doing anything to address the cause of the condition. You would just be managing your symptoms naturally while still trying to address the cause of the problem.
Also, they don’t work for everyone. If someone is taking a medication, I can’t tell them to stop it. Even if I could, I wouldn’t tell them to do that because I don’t know if the bugleweed or L-carnitine would help.
Commonly, what I tell people to do is if they are taking antithyroid medication and are looking to get off of it as soon as possible, I can’t tell them to do that, but I could say to continue doing what you’re doing. Let’s add some bugleweed to that, like half a teaspoon, twice per day, for example. The dose depends on the person and the levels. Some people might be a full teaspoon twice a day. According to the literature, 2,000-4,000mg per day of divided doses of L-carnitine tartrate.
If it’s working, and you’re on PTU and bugleweed, then a few months from now, you do another thyroid panel, and it tends to be on the hypo side, then the goal is for the endocrinologist to say- If you don’t tell them what you’re doing, he/she might not know, but if you’re more hypo, let’s cut the PTU further. Eventually, if you continue that pattern, get to the point where you’re just relying on the bugleweed and/or L-carnitine.
As you’re addressing the cause of the problem, hopefully get to the point where you don’t have to rely on anything. That’s the ultimate goal.
If someone had to rely on a choice, where they were taking long-term bugleweed or long-term PTU, I’d rather them take bugleweed. Everybody is different. Some people would prefer the medication since it’s covered by insurance, whereas bugleweed is not. They are paying the money for that.
Like I said, the ultimate goal with all these conditions, whether it’s Graves’ or toxic multinodular goiter or Hashimoto’s, is to address the cause of the problem. It’s different with Graves’ because Graves’ is autoimmune, and we’re doing things to address the autoimmune component. Even with toxic multinodular goiter, there is an underlying cause behind that.
I gave the more common causes according to the literature and my experience working with patients. The insulin resistance, problems with estrogen metabolism, inflammation, sometimes iodine deficiency. Those are some of the things to look into.
I’ll wrap up by saying obviously, I will be biased because I am a natural health care practitioner. Some things you could do on your own, like the Level 3 diet. Testing the hemoglobin A1C, fasting insulin. You could get that through your doctor.
As far as doing some of these other tests, one thing I didn’t mention is the dried urine test will look at estrogen metabolites, but also the gut plays a role in metabolizing estrogen. Some people could benefit from doing a comprehensive stool panel to see what’s going on. If they have a lot of imbalances in the gut, then they might need to do things to improve their gut health, even if they are not experiencing gut symptoms.
The point is, it can get complex. You try to do as much as you can on your own. Take advantage of my book and the information you gained from the boot camp. But if you feel the need, there is me and other functional medicine practitioners; consider working with them.
Any questions on your end?
Nanette:
That was interesting about how I might have gotten this in the beginning. I grew up on a farm, inland, West Virginia. Maybe iodine deficiency, I’m not sure.
Dr. Eric:
Could be pesticides. If you grew up on farmland, I don’t know your farm, but other surrounding farms, being exposed to the toxins that could also act as endocrine disruptors and could affect the metabolism of estrogen as well. There is a lot of possibilities. Maybe you don’t do this now, but drinking water out of plastic bottles for a period of time. Could get exposed to the xenoestrogens that way.
This happened when you were really young, as far as the start of it, the nodules. It does seem like something happened prior to turning 16.
Nanette:
Right. Maybe some trauma, too. When I was about eight, I was pushing a chair into the table, and I slipped. I hit myself right here with the table. Maybe that was a little trauma. Certainly was trauma. Maybe that contributed over time.
Dr. Eric:
Yeah. That definitely could have caused inflammation. You formed the nodules when you were 16. Chances are the doctors that you looked at didn’t think about the cause. They just said, “You have a nodule. We need to remove it.” Then you got another nodule and needed to remove it.
That’s the problem with most medical doctors, including most endocrinologists. They never ask what the cause is. That just comes down to the training in medical school. There are some who go on to focus a little bit on functional medicine and open up their minds. Unfortunately, that’s not the case with most doctors.
Nanette:
Things have improved. Of course, I want to know why I got this and where it came from. I will check for insulin resistance.
Oh, you mentioned gut tests. I actually did do a gut test. For the most part, that was good. I had some high H-pylori. I took some mastic gum to get rid of that. I don’t know if it’s gone, but I did the mastic gum. I have been taking a lot of supplements to build up my gut. I am still doing that along with your diet.
Dr. Eric:
Wonderful.
Nanette:
I’ve been working really hard to get better. I would love to get rid of my nodules and the PTU. You don’t think that being on PTU at a low dose for five years is alarming? I seem to be tolerating that well. You’re not telling me to run away.
Dr. Eric:
I have an episode on my podcast on low dose antithyroid medication for a long time, talking about this. Most of the research out there is on taking lower doses of methimazole. There are people who have been on methimazole for 10-15 years, even longer, without a problem. It’s been a little bit since I put together the episode.
There wasn’t a lot on long-term PTU. It really comes down to monitoring the blood tests. It’s not ideal. Even being on methimazole, if someone works with me, and the end result is them on methimazole, that’s disappointing to me because I want to get them to the point where they’re not on medication. That’s why they’re coming to see me, not for me to tell them to get off, but to get them to the point where their thyroid is working properly, and their immune system is working properly. Their endocrinologist, based on the results, will wean them off.
It’s not ideal to be on PTU for five years or longer, but risk versus benefits. If you’re monitoring the liver enzymes, and if the white blood cell count is remaining okay, because sometimes the antithyroid medication will affect the white blood cell count. If your liver, white blood cell count, kidneys all look okay, and you’re on a lower dose, then let’s put it this way.
If I was in your situation, and if I had to choose between low dose PTU and getting radioactive iodine or thyroid surgery, I am pretty confident I would be doing what you’re doing and staying on the PTU, as long as my bloodwork continued to look okay. I wouldn’t be happy that I’m on the PTU, but that’s why we’re having this conversation, too. If you were happy, you wouldn’t be doing this audit.
From a risk versus benefit standpoint, yeah, if I had a choice, if the option was being on low dose antithyroid medication or getting surgery or radioactive iodine, I am pretty sure I would choose low dose antithyroid medication.
Nanette:
It’s nice to keep your thyroid.
Dr. Eric:
Exactly. That’s obviously the goal: try to help people save their thyroid.
Thank you so much, Nanette, for doing this. I really appreciate this. Hope you found the feedback to be valuable.
Nanette:
I did. Thank you, Dr. Eric.
Dr. Eric:
Thank you. Take care.
Nanette:
Okay, bye.