Alright, so back when I got diagnosed with lyme disease I also was shortly diagnosed with a thyroid that wasn't performing well. I am hypothyroid as a result of the long-term infection.
Long story short, back when I first got sick the symptoms that made me unable to function were: dizziness, brain fog, confusion, hot burning skin, constant chills, sweating in the night.
Well fast forward to a few weeks ago. I ran out of my thyroid medicine and as a result of going back to work full time i couldn't travel to my doctor who prescribed my thyroid medicine to get a re-fill on my prescription. I called their office and they said "You may not need this thyroid medication anymore, the doctor has to see you to find out". I couldn't get to her office 2 hours away and get off work to travel there so I went without the thyroid medicine for about 7 days.
By day 7 I was so sick I couldn't even begin to tell you. All of the symptoms I associated as "LYME" were back.... the only difference was that I hadn't taken my thyroid medicine, and after a few months on it I felt NORMAL completely normal. As good as I felt since being sick. So I obtained an emergency prescription for my armour thyroid and started taking it again. After about a week I was NEARLY back to normal. So it wasn't really my lyme symptoms at all. it was just my thyroid, pretty interesting as I wonder how much remaining is really lyme and how much is just my thyroid. I'm 26 years old so the fact that I have to take a little pill every single morning for the rest of my life to function is VERY depressing for me. But when I take it I feel close to normal except for hot flashes.
Does anyone here have ANY experience with hypothyroidism as a result of lyme? It's sad that lyme destroyed my healthy thyroid gland.... but I'm trying to talk to others and learn more from this.
Posted by lou (Member # 81) on :
So is the armour working for you? They changed the formulation and a lot of people are having trouble with it, including me.
Posted by seekhelp (Member # 15067) on :
Wow Clint31, I thought you left forever. You mean to tell me all this time and LLMD's saying Lyme wasn't the core issue? If I could take a little pill every day to function normally, I'd kiss the cement ground and jump in joy as would most here. You should be absolutely thrilled there was a simple answer with a solution. I'm glad to hear you're better. Happy endings are nice.
I remember you were Rxed all kinds of heavy duty meds like flagyl. Wow.
The probability of being all Lyme seems remote as a thyroid pill couldn't contain a bacterial infection, right?
Would you mind sharing your lab results indicating poor thyroid function? Was it obvious or a clinical diagnosis? I'm curious as my TSH hovers at 2.0. I hear 0.5-1.0 is better. No docs touch a 2.0 number though and all other thyroid labs are normal range.
Posted by sixgoofykids (Member # 11141) on :
Yes, I have to take thyroid meds as well. At least it's treatable! Posted by Jane2904 (Member # 15917) on :
My daughter is only 13. She has Lyme, bart. erhlichiosis, Mycoplasma.....
She is borderline hypothyroid and has high thyroid antibodies.
The endo finally agreed to treat, but we had to stop after a week. meds made her very lightheaded and decided to stop Thyroid treatment.
Our daughters Lyme specialist said we should not treat. levels will get better with Lyme and Co treatment. I wonder........
Glad you are doing better Clint.
Posted by Beverly (Member # 1271) on :
I have to take my thyroids meds and I belive that Lyme attacked my thyriod gland also. On of the strangest herxes I ever had was when doxy went right to my thyriod gland.... boy did it hurt! I did not understand it then but I do now.
Lyme does do damage, some of it can be reversed but not all of it.
Good luck and glad you are feeling better with your meds.
Posted by coltman (Member # 21272) on :
I have TSH floating slight above 2, total t3 under 100. I am taking naturethroide 16x2 mg day and frankly so far cant see any difference with it
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by lou: So is the armour working for you? They changed the formulation and a lot of people are having trouble with it, including me.
Here is a whole other issue! Armour isn't really producing that medication anymore, that is the word on the street anyways..... so I found a pharmacy in Maryland which manufactures a replacement because nothing else works for me. Somehow my pharmacy locally here had enough armour left that it seemed to do the trick. But i am concerned that the armour is off the market which is really sad because it will leave many people very sick. Synthroid is garbage and has horrible side effects. Armour was the only thing that restored my health.
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by seekhelp: Wow Clint31, I thought you left forever. You mean to tell me all this time and LLMD's saying Lyme wasn't the core issue? If I could take a little pill every day to function normally, I'd kiss the cement ground and jump in joy as would most here. You should be absolutely thrilled there was a simple answer with a solution. I'm glad to hear you're better. Happy endings are nice.
I remember you were Rxed all kinds of heavy duty meds like flagyl. Wow.
The probability of being all Lyme seems remote as a thyroid pill couldn't contain a bacterial infection, right?
Would you mind sharing your lab results indicating poor thyroid function? Was it obvious or a clinical diagnosis? I'm curious as my TSH hovers at 2.0. I hear 0.5-1.0 is better. No docs touch a 2.0 number though and all other thyroid labs are normal range.
As I got to feeling better I stopped coming here as much---reading about all the issues wasn't doing me any good.
I am not saying that the thyroid pill contains a bacterial infection. I am saying that my symptoms that bother me weren't lyme disease, they were because my thyroid isn't working. When I take my thyroid pills I feel normal or close to it.
NOW.... I still have things that ARE lyme, that show active lyme. Body aches, heart palps, muscle twitches... but they've all improved. I thought that the burning skin, dizziness, chills, cold feeling all the time, night sweats.... all disappear when i take my thyroid medicine regularly.
Posted by Clint31 (Member # 16420) on :
I have no idea what my lab numbers were--I will see if I can dig them up somehow in the future.
Posted by seekhelp (Member # 15067) on :
Thanks Clint. I guess my point was we assume all is Lyme because we're told this so often. It's refreshing, humbling and important to hear stories like yours at times.
I just asked if you had the results as it would be encouraging it is wasn't ridicously out of range and you were helped anyways by the meds. I may try harder with them then.
Also, I recall you had horribly low Vit D and testosterone. Good memory, huh? Did treating these help or were did they self-correct with proper thyroid treatment?
Posted by disturbedme (Member # 12346) on :
Glad the thyroid meds has helped you. I am also hypothyroid. I was diagnosed with that BEFORE lyme and for a long time I thought that was my only problem. The first few days of thyroid treatment I also felt normal and well. I thought "FINALLY, I am going to get better!!!!" but then back down I went to feeling just like I did before thyroid treatment.
Thyroid treatment I don't think has really helped me much at all, unfortunately. But I still treat it regardless...
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by seekhelp: Thanks Clint. I guess my point was we assume all is Lyme because we're told this so often. It's refreshing and important to hear stories like yours at times.
I just asked if you had the results as it would be encouraging it is wasn't ridicously out of range and you were helped anyways by the meds. I may try harder with them then.
Also, I recall you had horribly low Vit D and testosterone. Good memory, huh? Did treating these help or were did they self-correct with proper thyroid treatment?
I understand. The thyroid is a really important part of the body basically people don't know it until something goes out of whack with it. It regulates everything in the body. I thought it was no big deal and that it wouldn't affect me to stop taking my thyroid medicine. Aparently I was wrong. I haven't felt "normal" since, although I might be returning to normal little by little but its taking weeks to get back to it being back on my thyroid medicine.
As for the vitamin D.... it was very low. I made sure to get as much sunlight as I could this summer and now that bad weather has returned I'm back to taking supplement vitamin D. I'm not sure how much it helped my levels but I take it as precaution and to increase my chances of being 'well'.
I felt so bad for so long, there were many things in my body out of whack. Testosterone, Thyroid, Vitamin D levels, cortisol levels, all kinds of stuff. So any number of these things could have caused me to be dizzy and brain fogged, etc. and if I take care of them I can maybe return to normal. Thats just the way I think of it.
Posted by aliyalex (Member # 6976) on :
Well I just found out that I am hyper thyroid and was prescribed armour, too. does this sound right? thx
it gets compounded.
Posted by disturbedme (Member # 12346) on :
Aliyalex - No, if you were hyperthyroid, you would not be on a thyroid medicine like armour. You must be hypothyroid if you were prescribed armour.
Posted by Clint31 (Member # 16420) on :
like I said I'm concerned that armour thyroid is going off the market. It's a huge mystery right now. Its sad.
Posted by Pinelady (Member # 18524) on :
Even if you have healthy thyroid function TSH, you can have malabsorbtion from the borrelia infecting cells. That can still be aided by supplementing.
Posted by Clint31 (Member # 16420) on :
another question I'd have is... is there any chance once I am recovered 100% from lyme disease, that my thyroid will return to normal function without medication?
I have begun taking seaweed abstract every day because I heard it was good for the thyroid. I am just hoping I don't have to obtain and buy $25 medication every month for the rest of my life to take just so I can lead a normal life. I'm only 26.
Posted by lpkayak (Member # 5230) on :
twice when i ran out of my armour and/or my cortef i crashed big time. i'm careful now. but i think i have these two problems plys Bb and babs and bart
Posted by dguy (Member # 8979) on :
Clint31 - I agree with what you said about hypothyroid symptoms feeling like those of lyme. I've experienced that too.
In my experience, the infection interferes with normal T4 to T3 thyroid hormone conversion, as well as blocks our cells from using the hormone. Consequently, despite normal levels of hormone circulating in our blood, we have many of the symptoms of hypothyroidism.
Unlike synthroid, armour contains T3, which I suspect is why many lymies feel better on armour. I need to supplement T3 as well, but do it via cytomel.
Posted by O2Btickfree2 (Member # 9742) on :
I have been on synthroid and hypo thyroid for 40 years. One time i had moved and didnt have a doctor and was with out t for about a month. Well finally got to a doc and had it tested and he called me at home and asked if i was okay. My level was 100 he said he had a lady go into a coma at 70 and to take it easy. My lyme doc took me off of it and just put me on t3 because have none.i got so bad didnt even have the strenght to hold my head up. Thyroid makes your skin dry , nails brittle, muscle pain if it gets to low, it causes emotional issues, eyeballs that looked bugged out. You will accumulate water but skin will be dry if you dont take meds right. You will have constipation because your body keeps the water but not using it. So never go off your meds is the point. When i first had it i could go off a week before i noticed symptoms then two days and now i cannot be off. If you get off it takes as much time as your off to get back strength. I dont have lots of energy but can tell when im off. Glad its not your lyme.
Posted by sixgoofykids (Member # 11141) on :
Clint, I'm better from Lyme but still have to take thyroid.
Seek, my TSH was somewhere around 3.8, which is within range. My LLMD then ran the full thyroid panel and all the scores were barely within range, so we did a trial of thyroid meds. I do feel better on them and when my TSH < 1.
Posted by seekhelp (Member # 15067) on :
My TSH has hovered between 2-3 for 10+ years. T3 is high normal. T4 is mid normal. No thyroid Abs and normal thyroid ultrasound. I was going to try Armour again at low titration, but it was pulled.
I'm not comfortable with the pure T3 my LLMD Rxed, especially since he only sees patients once every six months. That's way, way too long to be taking those meds w/o more monitoring of levels IMO. I don't have a local physician willing to work with this doc. They are not fans of LLMDs at all.
A TSH of 3.8 surely warranted a trial of medication Six.
Posted by bettyg (Member # 6147) on :
sorry have to scroll on by this one too since i can't read or comprehend it, please break it up into short paragraphs and double space between each one ok...
too long of paragraphs in your 1st post and NO paragraphs in o2bfreeticks -****************************
Posted by seibertneurolyme (Member # 6416) on :
A couple of points noone else has made.
Everyone needs to have their iodine levels tested by a lab or do the skin test yourself. Will bring up an old thread I posted on this a couple of years ago. For some with hypothyroid symptoms supplemental iodine (iodoral) might work as well as or better than armour thyroid.
The 2nd issue -- take your temperature. If your body temperature runs low your thyroid may not be functioning adequately (regardless of thyroid test results).
Many people do not realize how important the body temp is to bodily functions. Many enzymes in the body will not work correctly if the temp is too low.
Of special importance here is white blood cells -- do not funtion properly at low temp -- sorry but I don't know what temp exactly would be considered too low -- probably differs for different people.
Some alternative M.D's will try to raise a person's body temp by various methods. One doc hubby saw knew of another doc who used Cytomel to raise the body temp of all his patients. Another doc tried to sell us a Peat blanket for a couple of thousand dollars.
I have been doing some reading about the immune system and think the body temp issue could be a missing piece of the puzzle for many Lymies. I know hubby does much better in the summer months -- don't think it is just because he sweats some then with normal exercise.
I think a sauna could be beneficial as well as soak baths.
Clint,
My guess is that the thyroid meds raised your body temp and improved your immune system. Because you relapsed so quickly though my guess is that your immune system was more able to fight some coinfection (babs or bart or a virus maybe) while you were on the meds. Think the symptoms that improved were not Lyme symptoms but from some other infection.
Bea Seibert
Posted by Cass A (Member # 11134) on :
Dear Friends,
This is a very interesting and important discussion!!!
I first got wind of the iodine/thyroid situation when I was trying to lose weight on a "guaranteed" program, and couldn't.
The authors said if you didn't lose weight, to take your temperature 3 hours after getting up, and do that for several days. If it was averaging below 98 degrees, you had a thyroid problem, and no diet was going to work.
They said if it was low, to do the Wilson Thyroid Syndrome handling (or Wilson Temperature Syndrome--that's how you can find it on the internet now).
So, I took my temperature--average 96.8!!!
I did the Wilson Syndrome handling, which involves taking compounded T3 and T4, and my temperature NEVER stabilized at above 98 degrees--IN ALMOST A YEAR!!
Now, I know that I had Lyme Disease during that time--actually, had it for sure for at least 4 years prior to starting that diet.
After my Babesia treatment and some rounds of Allergie-Immun, my temperature was staying 98 degrees and up. Now, unfortunately, it's back down into the 97.8 degree area much of the time.
So, this is still not resolved.
One interesting datum, to me, is that many people on the Marshall Protocol report having to lower their dose of thyroid medication (if they're taking it when they start) very early on in that protocol.
I'm about to start an organic food supplement that is supposed to naturally boost iodine, as well as having other benefits.
I'll report on it (the recipe is simple, and anyone can make it at home) and the results on another thread after I actually start!
Best,
Cass A
Posted by Shosty (Member # 12232) on :
Thyroid problems seem to be a complicated mix"
-"sick euthyroid syndrome" means problems, not with hormone production, but with absorption/use by the body, due to infection usually (like Lyme), which usually is not treated with thyroid meds
-thyroid antibodies might indicate autoimmune problems like Hashimoto's, which is treated with thyroid meds
-primary hypothyroidism for a variety of reasons, which would require thyroid meds
Armour, I believe has 20% T3 and 80% T4. Some MD's are treating with much lower amounts of T3, like 5% (as I remember), and in that case, the T3 is made up at a compounding pharmacy, while the T4 can be commercial levothyroxine. I think you can also "dilute" Armour with more T4.
As side note, I had a TSH level in the 5's. Most doctors wanted to treat me with meds, but one doctor said to first work on my adrenal function, which is low. I didn't do anything, frankly- too much going on with my kids' health. The next time I was tested, it was back to the low 2's. So apparently, thyroid tests fluctuate.
I am happy to hear Clint's news, especially since many of my symptoms match his (and I hav elow D, low testosterone etc.). I am on the cusp of deciding whether or not to go back on abx, with which I have a lot of gut and yeast problems, so maybe I will look into thyroid treatment again. I am doing a lot of D and going back on DHEA too.
Thanks!
Posted by Clint31 (Member # 16420) on :
good responses. keep them coming... keep the discussion going.
Posted by jamieL (Member # 16563) on :
I was diagnosed hypothyroid seven years ago after nearly a decade of fatigue.
I am also taking Armour. I felt fine after first treating but have had to increase the dosage about once a year.
Two years ago, I started to get Lyme symptoms. I suspect I've had Lyme my whole life.
IMO, I think the Lyme bacteria either attack the thyoid directly or prevent the thyroid hormones from entering the cells.
I ran out of Armour for two weeks and crashed fatigue-wise but not in other Lyme symptoms.
So Forrest Pharmaceutical is mo longer making any Armour? Is this true? What are we supposed to do?
Posted by jamieL (Member # 16563) on :
I looked on the Forest Labs website. They didn't mention not making the Armour any more...
Posted by cantgiveupyet (Member # 8165) on :
i was pulled off Armour when my reverse T3 came back slightly elevated and put on cytomel and crashed...could barely life my legs...temps dropped to 94, heart palps shaking...i really thought i was dying.
I havent been on thyroid meds for months now..my TSH is back to 1.83, which it was pre Armour...was lower on armour.
When i first went on Armour my temps did improve and so did my fatigue my CD57 also went up...and I gained much needed weight.
Clint- this is a great post because I wonder now that I really dont notice a difference off meds if I really even need them.
Ive had 4 mainstream doctors say I dont. One thought for sure that I did but my temp was actually normal 98.4 at the visit.
What are some of you taking instead of Armour?
Posted by KaitlinB (Member # 11718) on :
I think many of the symptoms those with TBIs suffer from are due to hormonal deficiencies.
Dr. B's guidelines state that Lyme disease affects the hypothalamic-pituitary axis, resulting in hormonal dysfunction.
He recommends supplementing those deficient hormones, along with abx treatment for Lyme.
It amazes me how many LLMDs neglect this important part of the treatment process.
Some (maybe most) LLMDs say that treating the illness with abx will result in the hormonal deficencies correcting themselves (this was the opinion my 1st LLMD).
My second LLMD tested for deficiencies in all hormones and supplemented those that were low. This improved or eliminated many of my symptoms.
It just seems so obvious to me that supplementing low hormone levels would help a weakened and overburdened immune system to better fight Lyme & coinfections.
Hormone supplementation is complex though and I think that's why many docs don't want to take it on.
I am hypothyroid and take time-release T3 (wilson's protocol). I have in the past taken Cytomel (worked, but not as well as TR T3) and Armour (didn't work for me).
I also produce sub-optimal levels of cortisol, HGH, aldosterone, testosterone, estrogen & progesterone and supplement for all.
Time will tell if I'll be able to stop some or all supplementation and to think I'll never be able to is a bit depressing.
On the other hand, I think it is well worth the time, cost & effort because of the improvement in my symptoms.
IMHO it is so important to investigate the hormone angle as part of Lyme & coinfection treatment and I think many could benefit.
Posted by seekhelp (Member # 15067) on :
One problem is some LLMDs play endocrinologist w/o a good understanding of how tough it is. Some are good at it, others may not be. I compare it to would you like your Endocrinologist to play LLMD? Posted by cantgiveupyet (Member # 8165) on :
Kaitlin- I agree and wish more LLMD tested for these or had a better understanding of how to supplement. I feel some of my symptoms are hormonal...which hormones are off I dont know.
Seek- I agree many dabble in it and I was overprescribed Armour at one point in my treatment. The problem is most endocrinologists just go off of lab results and if they are ok then you are fine.
I had one endo say to me...test results dont mean much..if it is elevated(in reference to my cortisol) it just means it is elevated at that time ....the resident working with him told me that hormones change all the time.
I should have asked why then based on those statements they were running labs and using them to diagnose me. Ive had three endos say that my labs are fine.
Posted by Shosty (Member # 12232) on :
I wrote that my TSH was 5+ and many wanted to treat me, but then the next time, it was 2+, and I did not need meds. Just to repeat, these things fluctuate and don't seem to mean much. My cortisol changes too, from very low to okay.
I think symptoms are a better guideline.
Some docs don't like to treat hormonal problems because they are afraid the function of the gland will decrease as the body depends on the supplements.
Armour is made up of T3 and T4. Insurance covers compounding of T3 if your MD writes a note that it is needed and not available at the dose you need, commercially. The proportion of T3 should probably be much lower than in Armour.
Posted by Gert (Member # 13584) on :
quote:Originally posted by Jane2904: My daughter is only 13. She has Lyme, bart. erhlichiosis, Mycoplasma.....
She is borderline hypothyroid and has high thyroid antibodies.
The endo finally agreed to treat, but we had to stop after a week. meds made her very lightheaded and decided to stop Thyroid treatment.
Our daughters Lyme specialist said we should not treat. levels will get better with Lyme and Co treatment. I wonder........
Glad you are doing better Clint.
Same thing happened with me......Once I treated LD I actually went off my AT. I never felt good on it and the same with Cytomel.
Posted by notkrazybrian (Member # 10621) on :
Clint, I was diagnosed with hashimoto's hypothyroidism when i was about 12. Thyroid problems are not uncommon with lymies, not at all. Very odd im hypo, yet so all the signs of hyperthyroidism. back in 01 when i was away at school i stopped taking my thyroid medication (im a lifer with this med) i got depresed, gained weight, very sluggish, but nothing compared to what lyme has done to me. I never thought about having a thyroid problem, i just knew i had to take my meds every morning, and that was about it, but like i said for me anyways having a thyroid problem, is nothing compared to having a bad case of Lyme. I think it would be a safe bet to say that the lyme disease, created your hypothyroidism, Brian
Posted by disturbedme (Member # 12346) on :
notkrazy - exactly!!! When I was first diagnosed with hypothyroidism, my endocrinologist didn't believe I had hypothyroidism as most of my symptoms point to hyperthyroidism. But the blood test showed I was hypothyroid.
Posted by canefan17 (Member # 22149) on :
I think the reason for this ^^^ is because even hypo's can go through hyper stages.
Especially Hashmitos. Their hormones will fluctuate up and down and depending on when you test your blood... you may show up hypo but have hyper symptoms.
It's all very complicated. Bloodwork is hardly an indication anymore.
Take your temp and follow your symptoms.
Posted by massman (Member # 18116) on :
Good points cane. Often it will waffle between high + low, like it does not know where to go.
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