Topic: "Thyroiditis", normal thyroid tests, and Lyme/Babs
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I don't get it ... my thyroid gland is tender and feels swollen (to me anyway, feels like there is a lump in my throat). PCP says not obviously swollen on exam but to me it gets so bad at times that i feel like I am choking.
Lab studies of thyroid have come back completely normal.
Is it true that you can have a case of "thyroiditis" that does not cause dysfunction of the thyroid gland itself?
I am scheduled for an ultrasound of the thyroid gland tomorrow.
Only treatment option offered thus far is a course of steroids to reduce thyroid inflammation to help me be more comfortable. some nights the choking sensation wakes me up.
I declined the steroids. Instead taking naprosyn sodium 2 every 12 hours and this is helping somewhat.
Anyone been through anything similar before? What is the potential that this is related to Lyme and/or Babs?
Any chance this is an actual infection with Lyme spirocetes and in a sense a "relapse" event?
I consider myself in remission and am on what the LLMD considers "maintenance" treatment, and have been for quite some time - over a year. No other obvious new symptoms - nothing out of the ordinary like periodic fatigue. Have noted a few more heart palpations, but I have been taking propranolol for several years.
Anyone here had anything similar happen?
I did email LLMD to ask a few questions and he said thyroid problems are VERY common with Lyme, etc, but he has not seen anyone on maintenance therapies develop these problems.
Thanks in advance for anyone with comments or recommendations.
Happy New Year to all at Lymenet.
Posts: 2276 | From NC | Registered: Oct 2000
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I was hypothyroid prior to getting first sx back in '98 sometime. July '99 is when all heck broke loose. Thyroid disease runs in families sometimes, and there is lots of history of thyroid diseases in mine going back to my great grandmother. I've been on meds for thyroid disease for 20 yrs.
Her thyroid and neck were so large, she wore all her dresses with large collars up to her ears to try and hide her still large neck area. You couldn't tell where her face began or where her neck ended.
Her neck dresses were loose around the neck due to thyroid enlarged people fell like they are choking with anything clinging to the neck or too close. I can still see that picture of her in my mind now as I type.
Do you have any body temperature control problems, weight gain/losses, other sx of thyroid disease?
I had racing heart many years ago before I found out after the dye and thyroid scan from endoc specialist...I was dx with goiter and hypothyroid.
My synthroid meds have changed one time since '99. Increase in dosage. My doc does thyroid test T3 & 4 on me two times a year. I often wonder that I'm getting enough though?
I'm at 150 mg a day, if that means anything to you. Connie, I hope you can find the answer to that scary sx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Acid reflux is very common among folks with thyroid problems. Not sure about its frequency with Lyme folks.
Reflux can also cause the choking, trouble swallowing problems that are often attributed to enlarged thyroids.
If you have your thyroid test results, would you mind posting them? Most docs have no idea how to read them and often see you're in range and think you're ok. Not so.
There are "optimal" levels vs "normal" levels. Most folks tend to feel better when their FreeTs are in the upper half of the range, usually in the upper 1/3.
And yes, I've been through all that. The bad reflux. The thyroid stuff. Only now am I beginning to realize that it all could be a kind of domino effect, caused by Lyme.
I'm also finding out that low iron levels are common in both thyroid and Lyme folks. Have you had your ferritin tested? Low ferritin can also cause palps.
I have multinodular goiter, with a very large primary nodule. While my TSH is good, both FreeTs are below midrange.
Unfortunately, I'm not on any kind of thyroid meds because my ferritin is still low and the adrenal fatigue is untreated.
Both iron and the adrenals have to be in relatively decent shape (or are at least being treated) before most people can tolerate Armour or Nature-thyroid. Otherwise, it tends to make them go hyper.
Additional note on the reflux - After 2 years on reflux meds, I found that mine went away almost completely when I eliminated gluten and dairy from my diet.
Gotta be careful with long-term use of reflex meds. They're rather infamous for causing nutritional deficiencies, particularly iron, Bvits, and calcium.
You might want to talk to your doc about supplementing if you're going to be taking the reflux meds for awhile.
Again, good luck today!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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You might want to talk to your doc about testing your TPO and Tg antibodies, if you haven't had that done already.
These are thyroid-specific and can indicate an autoimmune disease (Hashi's or Grave's).
Wouldn't hurt to rule these out.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Connie, good luck at appt. I forgot to say I also remember choking, but not in the night. I was choking on food.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Thanks for the responses. Will be interesting to see how the scan comes out today. Also, tomorrow, I have an appointment with my "functional medicine" doc. He is much more in tune with alternative issues in general, and probably knows much more about appropriate and complete thyroid testing. Hope he will help me look into this and hoping I will have the scan results back by then.
posted
FYI: I also had Thyroid Goiter 5 years ago. (but not a thyroid condition) It was Thyroiditis...
It was found by my regular Dr. on a routine visit. I had no complaints.
I thought my neck was just muscular from exercising. Although I was loosing weight and eating all the time.
It was hyperthyroid, then sent to specialist who watched it with blood work regularly over several weeks and months.
I became hypothyroid, then it became normal over a several month period. All on it's own. He was conservative about not giving meds immediately.
They believed it was an immune system problem and then corrected itself. Haven't had a goiter since, but have all the symptoms of low thyroid. I have asked each year for another thyroid blood work up.
IT always comes back normal.
I have low body temp, no energy, no sex drive, no motivation, dry skin, loose hair easily, extremely britttle nails, and gain weight and retain fluid rapidly.
I was hoping to get on meds to feel better. Dr. told me to try energy drinks? I"m a very natural person...
Two years ago, same GP called me with results of yearly blood work. Said I have lupus!!! Gotta be kidding. I go to the Dr. just for standard yearly physical, not complaining about anyting but lack of sleep and energy.
HOw did I get that? He Sent me to Rhuma who specializes in lupus. Rheum said it is not lupus, or arthritis, but fibromyalgia....
he thought I had a mental problem...and I told him that I did not go to DR. complaining of anything...the Dr. sent me in to see him. My GP is finding odd things each year, not me!
Never heard of it...(fibro)so researched it all.. I do have mild pains that come and go in my muscles.
But as I have been working out for many years intensely, and always eating right, he believes I have kept my symptoms mild.
Always thought pains were from exercise, and my one left knee problem from doing aerobics for 30 years.
Also Im 50 years old...so maybe menopause coming. Hormonal changes...? WELL..
Big problem is now , 5 years later , I now know I have lyme disease.
Thank God I was not treated for a thyroid condition.
My LLMD believes this thyroid problem was caused by either the lyme or my other problems co-infections.
NOt to make this a long message...but I was diagnosed only because of my personal curiosity of all my odd symptoms.
Never putting all my mild unique quirky things together until I played Bunco with my NJ neighbors.(it's a monthly neighborhood ladies game)_
Anyway, we all started sharing our medical conditions...and one neigthbor told us her horrible story of almost dying recently of a heart condition..(a generally healthy 30 year young mother)
She said it was finally diagnosed as LYme. We were all in shock. IT caused many of us to get ourselves tested,
Everyone tested in my neigoborhood has lyme!!!
And we all have different symptoms.
I went to a different LLMD. just to make sure that it wasn't the Dr. just diagnosing everyone the same way! Although all tests were done at Igenex.
The interesting thing is that we are all transplants to the neighborhood, and we believe each contracted it somewhere else. Not in NJ! CA, NY, MA, and PA.
Just thought this may help someone who thinks it's thyroid...or just wants to be certain they do not have lyme...
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Did U have a Auto-antibody Thyroid blood test? My T#s were norm but AutoAnt was elevated indicating early Hashimotos.
LLMD said this is common in Lymies.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Foggy, hey. What's an AutoAnt?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
OK, another update-
Talked to the functional medicine doc today and he said my antibodies were tested back in June and were negative. My thyroid was in the normal range as far as other values. He suggested I wait to see how the scan comes out and go from there.
So when I got back home, I had a call from the doc office who referred me for the thyroid ultrasound scan I had yesterday. I was told the scan showed "cysts" and "lesions". I was given the choice of waiting 6 months and having another scan OR being referred to an endocrinologist.
OK, I don't really like those 2 options that are in direct conflict with one another. On the one hand, the 6 months wait implies that this is no big deal. On the other, they want me to see a specialist.
I specifically asked about the potential for cancer and was not given a straight answer. So I elected the referral to the specialist option.
I also did not get an answer to my question "what would typically cause findings like that on a thyroid ultrasound?". Certainly they must have theories.
Would love to hear from anyone who has been through something similar.
I have the feeling that this IS somehow related to Lyme or Babs. But how can I determine this for sure? Since I am not having any other symptoms out of the ordinary for me, could this mean I could be having a relapse of one or both?
Oh, and one other issue - I was referred to an endocrinologist a few years ago from some strange symptoms by this same PCP practice and I had a very cold reception when I mentioned having Lyme. She blew me off as fast as she could, and if I am referred to her again, I will cancel.
If you were in my situation, what would you do next?
Posts: 2276 | From NC | Registered: Oct 2000
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posted
I've actually been in your situation. Still in it, more or less.
Multinodular goiter. Solid small nodules in right lobe. Large solid and cystic nodule in left lobe.
Thyroid levels are more or less ok (per my docs, although FreeTs are below midrange) and antibodies were negative.
I decided to see an endo on my own for a 2nd opinion because the ENT wanted to take half my thyroid out.
The most they'll do (if this much) is to put you on a low dose of thyroid meds as a form of suppression therapy in order to try to shrink the nodules.
There are a couple of things that can nodules. Lyme is apparently one of them, from what I've been recently reading.
The other thing could be an iodine deficiency.
Considering that there are now many substances in our water and food that can replace iodine in the thyroid,
even with an adequate intake through our diet, many people find themselves deficient in this essential nutrient.
Fluoride, bromide and chlorine are the major culprits.
As I'm just learning about Lyme's impact on the thyroid, I'm not sure how to advise you there.
If you're interested in learning about iodine supplementation, then you can check out www.iodine4health.com and its sister yahoo message board.
I'm currently on 100mg of iodine daily (along with an additional supplementation protocol) in order to avoid surgery,
shrink my nodules, and fight the possible cancer lurking in my primary nodule.
If you'd like any more info, please ask.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I was dx'd with a multinodular goiter caused by hypothyroidism over 20 years ago. During the dx period I was sent for all kids of scans and other tests, just to rule out things like cancer.
As it turns out it's just what I said it was at the beginning, no more, no less. Probably related to the Lyme.
At the time I was dx'd I learned that if you are going to have cancer thyroid cancer would be a good one to have. It is easily treatable and rarely goes beyond needing to have your thyroid removed.
Seeing an endo is probably a good idea. They're the ones who specialize in monitoring such things and making sure they are just an annoyance, and not a problem.
I hope that is all this is for you.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Wow! Thanks for the excellent info!
I tried the iodine4health site and it is apparently down. But did find it in a search - someone noted how often the site goes down.
The iodine thing hit home. I was previously on Iodoral but then ran out and did not continue. Just last week I decided I should be back on it and ordered more.
Will be interested in seeing if it makes a difference.
Meanwhile, I emailed my LLMD with results of the scan and he basically said no doubt this is related. I will probably end up making an appt with him. He is an ID doc but also Board Certified Internal Medicine so should be well experienced with all this. Certainly don't want to be treated like LYME is a bad word.
Thanks all for the helpful info. It helps alot to know i am not alone.
Posts: 2276 | From NC | Registered: Oct 2000
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