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Julie4848
Posts: 1128
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Can someone please answer if you can for me the following questions. Tick found on neck (not all the way in) came out easy 7-22-07. 11 days later I woke up to burning skin on check and neck pin and needle feeling. Went to the doctor he said maybe lyme, but your thyroid looks funny. Tested me for thyroid said I need an uptake scan. Just had that done and here is what it said. Finding consistent with clinical diagnosis of Toxic Multinodular Goiter. TSH of 0.017 mU/m1 and free T4 of 1.83 ng/dl. Other blood tests: Hemoglobin 15.7, HCT 45.3, Absolute Neut 8.5 T4, Free 0.012 and T3 total 2.11 He now tells me he thinks its all thyroid related and not lyme. Also can a thyroid go this bad within 1.5 months of being bitten by a tick. Plus I have no idea what Toxic Multinodular Goiter means. I have to look that up on the internet. Yes, I have an appointment with a specialist regarding Lyme, he just called and I see him on 9-26-07. I don't think its the thyroid. My doctor is just a GP. Thanks you all so much Julie Lyme will not win, we will and we WILL…
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RuthH
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Hi Julie, According to my previous LLMD, he said the Lyme bacteria attack the thyroid & that's why people have weight gain or loss. I don't know, that's just what he said. As for your blood work, here's a site that will help answer your questions. I have it saved to my favorite files so I can refer back to it if I have questions. http://www.lymphomation.org/CBC-blood-counts.htm Also, something I do all the time is to Google the name of what was diagnosed for a "definition" of the term. It helped me last night to find out what my MRI said. Ruth |
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Julie4848
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Hi Ruth: Thank you so much for the email site, good site, I have saved it. I see a specialist for the thyroid soon. My doctor said with it being Toxic multinodular goiter and being bitten just over 1.5 months ago he does not think Lyme is the cause. Plus back in 1993 I had a test done and it said Hypothyroid. I have no idea anymore. I have so many appointments with different doctors I need to get a journal... Doctor for my Thyroid, Doctor about the lyme to see if I do or don't have, and a allergist, plus getting married next sat. My appointment for the lyme doctor is not until the 26th of this month....Plus I don't want to start playing around with to many meds until after the wedding, I want to TRY hard to feel good that day... Again, thank you for the site, I appreciate it so much Julie Lyme will not win, we will and we WILL…
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erleichda
Posts: 133
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Julie, it looks like you have two different issues: Lyme and thyroid. Lyme attacks the thyroid but it would not have happened this quickly. The pins and needles feeling, plus all of the other things you have mentioned, sound like early Lyme. Last fall, I lost 100 lbs. in 6 months, 70 of the lbs. in 3 months. I am still losing and eat more than I ever have. My LLMD said that I am making reverse thyroid and gave me a prescription for T3:T4 thyroid. But I need more help with it than he can give me. He had the nerve to ask if the weight loss concerned me, and suggested that maybe I wasn't making enough stomach acid!!! Did your duck discuss hyperthyroidism with you? Your low TSH and high Free T4 could mean hyperthyroidism. Did he talk about Hashimoto's Thyroiditis or Grave's Disease (both related to low TSH/high free T4)? And I can't remember - did he refer you to a specialist based on these results? I have chronic brain fog but seem to remember something about being referred to an endocrinologist or something. Two different issues - in my opinion. But you want to kick the Lyme now so that it doesn't become chronic... |
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speedybak
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Hi gang! I just wanted to add a note as a Congenital Hypothyroid and LD patient. Although I have had my hypothyroidism since birth due to an underdeveloped thyroid gland, the Lyme Disease has thrown my thyroid levels from one end to the other. My primary doc is taking care of my thyroid needs; for I have fired 3 endocrinologists and I feel that my primary doc is handling it better than any endo. ever did. I got bit (never saw the tick nor the rash) in September 2006 while camping in the mountains in TN. I first knew something was wrong when I came down with Aseptic Meningitis. My thyroid levels went from being stable for 6 months to hyperthyroid within a week. I've had to have my thyroid levels checked every month since then, and every time my levels go from one extreme to another. When the LLMD did a thyroid test just 3 weeks after having it done by my primary doc, my levels went from hyperthyroid to severely hypothyroid. My primary doc again readjusted my thyroid meds and I will find out the recent results tomorow 09-11-07. It's been quite a roller coaster ride with my thyroid levels going from one extreme to another (from hyperthyroid to hypothyroid or vice versa). Thankfully I don't have to worry about goiters, etc; that would make it even harder to figure out what dose of Synthroid to put me on. Some of the symptoms (hair loss, joint pain, extreme fatigue) of hypothyroidism are the same as LD, so the two compounded really can be hard to deal with. I just received laboratory confirmation of being positive for LD as well as Babesia on 8-30-07. My LD labs were done through Igenex; so I have confidence that the best tests were done. Since I have to pay for the tests done by Igenex out of pocket, then send in the claim to my insurance for reimbursement (if any), I did not get all of the co-infection tests done. Eventually I will. Feel free to PM me. |
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Julie4848
Posts: 1128
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Hi: Thank you both for the email. Yes I'm seeing a specialist for the thyroid to see what is going on. The pin and needle feeling only lasted for a week and that is gone. The biggest problem is the burning feeling I have in my neck, chin and neck and the shoulder pain. I had to stop the axomc. due to hives, so my doctor is going to try doxy very low dose until I see the Lyme doctor on teh 26th. Plus I see an allergist Friday to see what drug I can take if I have lyme. Thanks again Julie Lyme will not win, we will and we WILL…
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erleichda
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Speedybak, last year I had a 110 lb. weight loss very quickly for no reason. My GP (whom I have not been with that long - I haven't been able to find anyone any good to replace my GP that retired) just scratches his head. My thyroid is checking out okay, but something is having an effect on my metabolism and that is almost always thyroid. And since LD hits it hard, I'm just very suspicious. What should I be looking for? My bad LLMD said that I am making reverse thyroid, but for the weight loss he just shrugged his shoulders and said that I am probably not making enough stomach acid. What??? He also said "Does the weight loss concern you?" I have only seen him a couple of months, but he's messed up in a big way, so I'm biting the bullet and driving 15 hours to see someone good. Anyway, not many LD sufferers have the weight loss - it's usually weight gain, which I had four years ago, after the onset of symptoms. Then last year, wham! It all came off and then some. My usual weight was around 170 and I looked good at that weight. I went up to 240 after my symptoms set in. I now weigh 130 and only because I eat a TON. If I ate like a normal person, I would weigh much less. As it is, I look like my dad did when he had cancer. I have other symptoms more pressing, but I am afraid that the weight loss signals something serious and I wondered if you experienced anything like this, or if you know about it. I would love to keep the new metabolism but I think I have to give it back. (I wish I could afford the loose skin surgery though!!!) |
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Julie4848
Posts: 1128
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Hi: I never knew I had a thyroid problem until last month when they found the toxic goiders, I'm not sure if it has anything whatsoever to do with lyme, not sure I have lyme going to see a specialist next week regarding the lyme and the week after about the thyorid. Yes I've lost 23 pounds since August, no want for food. Lyme will not win, we will and we WILL…
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jaime1978
Posts: 963
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I had thyroid issues too.... found a tumor on the left half of thyroid, had it removed, 4 months later, felt another tumor on the other half, had it taken out... lyme causes thyroid issues...and now I wonder if had I known I had lyme at the time, I might still have my thyroid, now I will be on meds for thyroid my whole life. Definitly find a LLMD (lyme literate doctor).... I would be willing to be you have lyme. Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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speedybak
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Hello Lori! I would have to go with Jamie1978's bet that your thyroid issues are most likely being caused by Lyme Disease. How does the one particular doc know that you are making too much reverse T3? Has he actually measured your Reverse T3? As far as your weight loss goes, I know that it's NOT due to lack of or too much of stomach acid. Stomach acid has nothing to do with weight loss whatsoever unless you have a eating disorder such as Bulemia or Anarexia. I would get copies of any and all labs that any doctor has done since you have felt ill, such as when you suspect that you may have started feeling Lyme Disease symptoms. I know personally that Lyme Disease messes with the thyroid hormones, as well as the pituitary hormones, which includes TSH. My thyroid levels have taken me on a real funky roller coaster ride since I became ill with my first sign/symptom of Lyme Disease, which happened to be Meningitis. My levels may be normal or high and very low a couple of weeks later without even changing my dose of synthroid. Before LD, I had to take both T4 and T3 supplementation; now both are going haywire and my doc has had a challenge just keeping the T4 dose regulated. In fact about one month ago, my TSH went sky high and my T3 and T4 levels hit rock bottom. Within two weeks after making a very minor increase in my Synthroid dose, my T3 and T4 levels are above normal, but my TSH is normal. I'm having my GP taking care of my thyroid needs because I haven't been able to find a competant Endocrinologist. My GP has been having me testing my thyroid levels every two weeks due to the LD. The loss of appetite and weight loss can be contributed to thyroid disorders and/or Lyme Disease. Even though my thyroid levels are hyperthyroid right now, I don't have any appetite and I have gained weight despite lack of appetite and the increased metabolism. You want to make sure that whatever GP you see or whomever you decide on letting checking your thyroid, that they test the following: Free T3, Free T4, Total T3, Total T4, TSH. They may also want to do the following: ANA, Reverse T3, Reverse T4, CBC, CMP. I hope this helps and I hope you are able to find out answers soon. Keep me informed of your progress. I am happy to announce that now that I have been diagnosed with Lyme Disease, my GP is going to use Igenex Labs to test some of her other patients in which remain a mystery diagnosis. She said that maybe they have had Lyme Disease all along. She welcomed the reading material I made copies of for her so that she can educate herself further on Lyme Disease and how to help her patients get correctly tested, diagnosed, and treated. I wish all GP's were like mine; open minded and listen to the patient. Like I said, keep me informed. Barb |
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