# Autoimmune disease and TT for toxic multinodular goiter



## MKO (Jun 8, 2015)

Hello and thank you for allowing me to join your support group.

I am a 55 year old woman and am a patient advocate for a foundation that provides support to rheumatic patients. Many of those with autoimmunity also have an overlap with thyroid disease, but as my focus has been on the rheumatic side, I feel a bit like a "thyroid kindergartner" and would like to learn more as I make some decisions about my thyroid that could seriously impact my long term health. I was so excited to find your forum and to read the very informative posts, so thanks go out to the owner/moderators for providing this wonderful service.

I hope I can be brief and apologies in advance if this gets long, but perhaps someone else here will be able to relate to my situation.

I have had rheumatoid arthritis (RA) that was set off by Lyme disease in 2006 and discovered I also had a mix of hot and cold thyroid nodules (>1cm) at that time, biopsied as benign, and was told to take a "watchful waiting" approach. Since that time, my focus has been on controlling the painful and life-altering and disabling symptoms of severe RA. As I do not tolerate conventional drugs very well, getting repeated episodes of further disabling drug-induced lupus, and contraindications for other common immune-suppressants, this has meant that I have had to take a more integrative and naturopathic approach to controlling disease symptoms. As a result, I feel a whole lot better, am functional and go to a rehab gym several times a week, but as my RA has been so severe in the past, I will be needing total knee replacements in the near future.

To prepare for this surgery, I realized I needed to get some ducks in a row and see what was going on with my thyroid. To this day, I always test euthyroid and so my thyroid took a back seat with all docs saying "No change, all is well." However, a year ago, when I started back to the gym to work with a rehab trainer and prepare for knee surgery, I soon realized I was exercise intolerant, sweating buckets after just a few mins of doing gentle cycling on a stationary bike. My heart started to skip and jump around (at rest or any time) and I was swinging between weeks of "swift gut transit" to constipation. When the cool weather arrived, everyone was wearing layers and I was in a sleeveless T-shirt, everyone laughing at me and saying it must be menopause as my face would start blushing and I'd be sweating like a pig. I was even reasoning with myself that it must still be whacky menopause and I kept saying to my doc that all my symptoms felt hormonal. Well, turns out they have been! A routine EKG revealed that I had some serious heart rhythm irregularities and high BPM. A nagging feeling to get another thyroid ultrasound, led to me requesting one from my doc.

The ultrasound revealed one large cold nodule (4.6cm) that had engulfed the left lobe and several others, elsewhere on the isthmus and right lobe. After a biopsy (benign) and waiting 3 months to see an endo, I got a full panel of thyroid tests, checks for carcinoid - all normal - and sent for an RAI scan. This scan revealed the large nodule was cold and the other 7 (4 on isthmus and 3 in right lobe) were hot. Finally, I had some answers to my strange symptoms and, strangely, a week after the RAI scan, my palps have stopped, though I had a pretty severe reaction to it - very sore throat that lasted for several days, followed by a mini thyroid storm and flare in my RA.

The endo said she believed I had Hashimoto's, as my TPO was slightly elevated. Her recommendation was partial thyroidectomy to get rid of the left lobe and cold nodule and to have low dose RAI for the remaining thyroid tissue. After my reaction to the RAI scan, I'm not too enamored with that option. She referred me to a surgeon and I selected one at Yale who is running "percutaneous ethanol injections" (PEI) for thyroid papillary cancer, hoping she would consider doing it to try to save all or a part of my thyroid. Unfortunately (for me), she is limited to only doing PEI for her study or patients who are unsuitable surgery candidates. Her recommendation was total thyroidectomy and she changed the diagnosis to "toxic multinodular goiter."

My biggest fears are not the total thyroidectomy, but that:

(a) I am already 45 lbs overweight due to an inability to exercise and repeated cortisone shots every 6 weeks to keep my knees functional. This, in spite of rehab gym, careful diet and being gluten-free. If hormone replacement isn't ideal post-surgery (TSH is currently .41) and I gain more weight, this could be disastrous for my knee replacement surgery and the challenges of painful rehab. Anyone experience in-range labs and weight gain in spite of this form of hyperthyroidism? Am I wrong to think it might all be due to the cortisone shots?

(b) I have trolled for research and could only find 1 study that followed TT patients with toxicosis (Finland in 1954), and co-existing RA, and the outlook looks bleak in terms of worsening disease. Taking into account that it is an old study and perhaps that thyroid medications and surgical procedures in those days weren't as refined as they are today, it's pretty common for anyone with autoimmunity, even today, to experience disease worsening after any shock to the system. Interesting to note is that even some in the control group (without pre-existing RA) wound up getting RA after TT.

www.ncbi.nlm.nih.gov/pmc/articles/PMC1006742/

Does anyone here have any words of encouragement or personal experience of autoimmunity and TT to share? I am considering flying to Italy to seek PEI and thermal ablation of my nodules and where these treatments are attempted more frequently prior to surgery. It's a risk and an expense the family doesn't need, but with the added concern of RA worsening, after fighting to gain some symptom stability for the past ten years, it is daunting to think I could wind up where I started, or worse.

I have found a couple clinics in the US that do PEI, but have had no response from them after making inquiries.

Thanks, especially if you managed to read through to the end of this long missive! Anyone with RA or another autoimmune disease who has had TT or anyone who has some insight to share, I'd be very grateful.


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## Octavia (Aug 1, 2011)

Hi, and welcome! Glad you found us.

I'm not sure I understand what the goal of PEI is. Can you explain further?

I don't have any firsthand experience with autoimmune conditions, but I'd be willing to bet that you'll hear from several folks here. I'll hold my prediction on what they'll advise/share with you.


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## Lovlkn (Dec 20, 2009)

I would encourage you to have the total thyroidectomy and go on total replacement.

Removing a portion of your thyroid will make it hard to stabilize on replacement med's.

I actually weigh the same I did when my thyroid was removed so if replacement med's are dialed in properly weightgain should not be an issue.

The cortisone shots probably have alot to do with your weight gain??


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## MKO (Jun 8, 2015)

Hi Octavia and Lovlkn,

Thanks very much for your replies. Very kind of you!

Octavia, you asked about the goal of PEI. Do you mean how it works, in general, or my goals in seeking this treatment for myself?

If anyone is interested, I could paste study links to PEI, but I'm having trouble copying/pasting into my posts here and had to type in the one above. Is there something I'm doing wrong or a setting I'm aware of in this regard?

Lovlkn, my thoughts exactly about the cortisone shots, but each time I mention it to any doc, they all deny it, saying that the cortisone remains local to the joint capsule. If that's the case, then why do they warn patients of sugar spikes and diabetes, salt and water retention, cortisone flares, cataracts, osteoporosis, thinning skin and poor wound healing, etc? Also, why does my systemic RA feel like it's in complete remission for weeks, the day after a knee shot, although my hyper symptoms ramp up to the max? I think this must be one of the best kept secrets in medicine!

I also think you're wise with regard to your comment that partial thyroidectomy, followed by RAI, makes no sense in terms of trying to find a stable dose post-surgery, quite apart from the nasty reaction I seemed to experience after the RAI scan. Endo denied the radioactive iodine for the scan (I had both oral and IV) could cause my symptoms, but am I mad in thinking that iodine exacerbates hyperthyroid symptoms? Is this type of reaction denied in the same way that cortisone shots cause weight gain?

I think I may be shooting for the moon to be looking at PEI and fine needle thermal ablation my nodules, because it's just not a standard of care in the US and I'm yet to find anyone who has had it performed here. I just feel I need to check this out in case I regret it later.

Before I press the button to move ahead with TT, it would be so helpful to know how other RA, lupus or other autoimmune patients have managed in terms of disease worsening/improving after surgery. So many autoimmune folks find their disease starts after some traumatic event, a shock, accident, or long-term stressor, illness, infection, surgery, etc. As I have some other major surgeries coming up that could also potentially worsen or improve my situation, I am worried that of the potential for worsening and that this would preclude me from knee replacements. I'm not currently housebound, but I will likely be in a wheelchair within a few years, if I don't get my knees done.

Thanks again, folks!


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## Andros (Aug 26, 2009)

You really have some serious issues and challenges.

My rheumatologist and I have found that keeping my TSH barely detectable, keeps all antibodies at bay. I do have Lupus, and Sjogrens.

I have no thyroid as it was ablated and I am glad about that because like you, I was gaining weight. Since I got on the proper thyroxine replacement and dose for me, I lost all that weight. What a blessing!

Take a deep breath here and let us help you through addressing one issue at a time. My humble opinion is that it is in your best interest to get a Total Thyroidectomy.

Welcome to the board and do know that we are here for you!


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## joplin1975 (Jul 21, 2011)

A couple of thoughts...

I seriously hope you doctor isn't really suggesting a *PARTIAL* followed by RAI? RAI is tough, tough, tough...especially when you have residual thyroid tissue. There's swelling and discomfort that, for me (I had significant residual tissue) knocked me on my butt. Whereas I re-roofed the house 11 days after surgery.

Moreover, while RAI is a great option for those of us with thyroid cancer, suggesting that it be used following a partial OR total thyroidectomy on a benign tumor is really not wise, in my opinion. RAI is associated with a small but real increase in secondary cancers, including breast and leukemia. Why on earth they would suggest that for someone who does not have cancer is mind boggling. If that IS what they were really suggesting, please, please, please get a second or third opinion before letting this doctor touch you.

I've read a bunch on PEI and while I'm no expert, it doesn't make a load of sense to me to do it on nodules. Nodules aren't discrete structures. They are part of the thyroid. PEI will destroy that tissue (assuming you are lucky and assuming it works), in effect destroying your thyroid. Which means you will still have thyroid tissue left for your antibodies to attack. I'll agree with the others and say that a TT seems like your best option.

Finally, while I realize this is completely different, my arthritis (which is *NOT* RA) has significantly and profoundly improved since surgery. I did gain 27 pounds after surgery but ONLY because I was improperly medicated. I have since lost the weight and feel like I have regained my life back. No more aches and pains. I feel 10 years younger. Did this happen immediately? HECK NO. This is very much a long term result.


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## VFRgrl (Feb 15, 2015)

Hi MKO;

I'm getting a TT tomorrow for a toxic multinodular goiter. I GAINED >40# being hyperthyroid. Yep. Despite exercise (2 hours a day) and low calorie diet. I have lost almost 35# of that in the last 6 months while on Methimazole (anti thyroid drugs) so yes, it IS possible to GAIN weight hyperthyroid. I now have no choice regarding the surgery. My largest goiter is now displacing my trachea  I have been on a rollercoaster the last few months with getting my levels o.k. so my advice- get it OUT while you can.

I'm hoping for a positive outcome like many here, but being realistic that there are lots and lots who don't have a positive outcome- but I'll cross that bridge when I get to it. It can't be worse than the up and down every few weeks and I've been sick for YEARS now undiagnosed..

Lori


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## MKO (Jun 8, 2015)

*Lori*, thanks so much for your post in reply. I had just read your thread below and was so grateful to read that I'm not the only one feeling I'm nuts and that weight gain can be caused by a crazy toxic multinodular goiter, in spite of a low level TSH and otherwise normal labs. I have found no one else who could explain this - doctors or fellow sufferers. Thank you so much, especially as you are preparing for your TT tomorrow. Very thoughtful of you to reply (I almost posted on your thread, but didn't want to hijack it with my ramblings) and I wish you all the very best. I think with the kind input that I'm reading selflessly offered by the lay-experts here that you'll be feeling your old self in no time! Please don't be put off by my concerns, as these largely revolve around my RA. If my case was like yours, I'd have no reservations about TT. So, go into surgery tomorrow and feel confident you are making the right choice for you. I have only just met you, but I send you all good wishes, grateful to have met you, and will keep you in my thoughts tomorrow!

Isn't it the strangest thing that you lost weight on anti-thyroid meds? Seems these autonomously functioning toxic nodules literally suppress normal thyroid function, because they function independently of the pituitary, so I half wonder if there is an element of hypothyroidism going on. Either that or the exercise intolerance they cause just make doing any form of exercise impossible? When I saw my RAI scan on the technician's computer, he showed me all the lit up areas, indicating the 7 toxic nodules...the rest of the thyroid was dark as night and looked dead. I'm beginning to see the light with the upsides of TT, but with the added concern of RA, I am in quite a bit of fear that my autoimmunity could go crazy afterwards. The positive side is that it could improve and my thyroid has been making the RA worse all along, of course, or that it remains stable, but as no one seems able to predict this (even the experienced Yale endocrine surgeon), it's really an unknown for me at this point. Are there really so few autoimmune patients (other than autoimmune thyroid) who have TT?

Speaking of which, *Andros*, thank you for sharing with me that you also have lupus and Sjogren's. I was so touched by your warm welcome and reassurances. How wonderful that you have found your sweet spot with hormone replacement. Lupus patients can be so sensitive to meds and I seem to have a proclivity to getting the drug-induced lupus variety. It's why anti-thyroid meds just aren't an option for me. If you don't mind me asking a few questions, did you mean that the thyroxine HRT is keeping your lupus and Sjogren's autoantibodies at bay or your thyroid autoantibodies? Also, are you taking anything for your lupus and Sjogren's? Do you think the thyroid ablation with RAI caused any systemic immunosuppression of your rheumatic diseases? I'm noting some commonly-used NSAID interactions with thyroid meds and wonder about this, too. Thanks again!

Hi *Joplin*, thank you for your posted reply! Yes, the endo's initial recommendation was partial thyroidectomy for the large cold nodule and low dose RAI ablation of the hot nodules. Her opinion was that low dose RAI would only get sucked up by the hot nodules and leave the remaining thyroid tissue alone to regenerate. She said she has patients in the same situation who then did not need any thyroid HRT. Apparently (my assumption), these autonomously hyperfunctioning nodules suppress the rest of the thyroid, so when they are treated with RAI, the remaining thyroid reawakens. That was her explanation, anyway. I am not at all keen on RAI due to the reaction I had to the "tiny" dose of RAI used for the scan! :sick0012: My Dad had total RAI ablation in the late 70s for hyperthyroidism (my Mum had Grave's) and I don't recall him being isolated from the family, at all. He became skeletal and was having thyroid storms before his docs realized what was happening. Sad to say, the surgeon believes, as I was a teen at the time, that my exposure to the radiation he received may have something to do with my whacky thyroid now, although Lyme can affect endocrines pretty badly, too. I totally agree with you re: RAI. I really felt resistant to having another RAI scan as I already knew I had hot nodules from years ago, but it was a necessary step to reach diagnosis as no one could identify what was going on for so long with my in-range labs. My poor Dad reached the end of his life with pulmonary fibrosis and prostate cancer and I always wonder if the RAI ablation had something to do with this...the lungs and breasts are rich in iodine and soak up radiation, too. As I have RA, I have to be so careful to protect my lungs as "idiopathic" lung fibrosis can be a risk factor and a side-effect of many immunosuppressive meds used to treat rheumatic diseases. I spend a fortune doing IV pushes of glutathione and IV Myer's Cocktails to help keep them healthy. I don't recall what treatment my Mum had, as she never talked about it. She was a pretty woman and it affected her self-esteem badly, because she had to wear thick prism glasses for her Grave's ophthalmology due to double vision, and, later, she passed from aggressive breast cancer. So, I really do appreciate your confirmation of my concerns about RAI. Some docs can be so cavalier about their recommendations and I've run the gamut of flakey docs who just follow dictated "standards of care" and seem unable to look outside this box with more complex cases. This has turned me into a firm (some think stubborn) believer of self-advocacy.

Re: the PEI for hot and cold nodules, what you're saying is similar to what the surgeon said. Her opinion was that I have so many nodules that my thyroid would be totally ablated anyway. Fine needle thermal ablation is another targeted technique being used in Europe and is also very successful for nodules. My feeling on this is that it might be safer to risk full PEI or thermal ablation of my thyroid than to do RAI or undergo surgery, due to my RA. With any of the options, it's likely I'll need replacement HRT, but I'm rationalizing that the actual method of destroying or removing my thyroid could be pivotal in terms of the outcome of my RA. I do fear I won't tolerate the thyroid meds on offer due to my poor drug acetylation and how they seem to build up to toxic levels in me. I hope this makes some sense. I must seem like a real whiner to you pros. It's been such a battle to control my RA that going back to that place of excruciating, wanting-to-die pain, is pretty scary.

It's actually helping a lot to talk this through with you gentle folks. I'm slowly getting there with your thoughtful, experienced insights. Thank you!


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