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Joint Pain, Hair loss, lyme?
Hey there. So every woman in my family (mom, aunt, cousin and grandmother) have hypothyroidism. For the past 9 months, I started having pain in the ball and big toe of my right foot. About 3 months ago, it started occurring in my left foot. Since then, I have developed bizarre joint pain in my feet, knees, wrist, fingers.. etc. Some days my left knee and right finger will hurt.. some days my wrist... it seems to move around, and doesn't necessarily occur on both sides of my body.
I also have general fatigue, low libido, and my appetite seems to have faded. I'm 5'6 and 128 pounds and have a lot of muscle. (I lift weights and generally feel strong, but tired..) Definitely not having weight gain... but the SCARIEST symptoms I have noticed for the last 3 weeks has been HAIR LOSS. It is quite devastating. It is definitely diffuse, which means it is general thinning (no bald patches). People in my life say they don't notice, but I feel as though half my hair is gone. Every time I gently stroke my hair (not pull) I get 15-20 strands... and this happens over 20-30 times per day. I am afraid that if this keeps going on in one month I will be bald!
I'm in the process of waiting for test results,.... My TSH came back 2.18.... but I begged my doctor to test me for free T3 and free T4... so hopefully those will show SOMETHING. I thought maybe I had rheumatoid arthritis, but he said the rheumatic antibodies didn't show up... I know I have been on the low ends of folic acid, b12 and iron in the past.. so i'm wondering if I am deficient. Though finding out I am deficient isn't an easy answer. The question would be, why am I not ABSORBING all of the nutrition I eat? I often see food in my stool (greens, grains if i eat them, nuts, etc.) I eat gluten free, a lot of grass-fed ALL LOCAL meat, local eggs, all organically grown veggies. I drink tons of nutrient rich mineral teas (nettles, raspberry leaf, oatstraw, red clover), drink bone broth every day... I take cod liver oil and fish oil pills, & vitamin d. I suspected that I could be low in Intrinsic Factor? It just doesn't make sense how I could be low on these things, ESPECIALLY b12 and iron considering the amount of high quality meat and eggs that i eat. My other theory is that I could have lyme??? Although i've never even seen a tick..
Could anyone offer any help? or theories on what this all could be? Thank you!
I also have general fatigue, low libido, and my appetite seems to have faded. I'm 5'6 and 128 pounds and have a lot of muscle. (I lift weights and generally feel strong, but tired..) Definitely not having weight gain... but the SCARIEST symptoms I have noticed for the last 3 weeks has been HAIR LOSS. It is quite devastating. It is definitely diffuse, which means it is general thinning (no bald patches). People in my life say they don't notice, but I feel as though half my hair is gone. Every time I gently stroke my hair (not pull) I get 15-20 strands... and this happens over 20-30 times per day. I am afraid that if this keeps going on in one month I will be bald!
I'm in the process of waiting for test results,.... My TSH came back 2.18.... but I begged my doctor to test me for free T3 and free T4... so hopefully those will show SOMETHING. I thought maybe I had rheumatoid arthritis, but he said the rheumatic antibodies didn't show up... I know I have been on the low ends of folic acid, b12 and iron in the past.. so i'm wondering if I am deficient. Though finding out I am deficient isn't an easy answer. The question would be, why am I not ABSORBING all of the nutrition I eat? I often see food in my stool (greens, grains if i eat them, nuts, etc.) I eat gluten free, a lot of grass-fed ALL LOCAL meat, local eggs, all organically grown veggies. I drink tons of nutrient rich mineral teas (nettles, raspberry leaf, oatstraw, red clover), drink bone broth every day... I take cod liver oil and fish oil pills, & vitamin d. I suspected that I could be low in Intrinsic Factor? It just doesn't make sense how I could be low on these things, ESPECIALLY b12 and iron considering the amount of high quality meat and eggs that i eat. My other theory is that I could have lyme??? Although i've never even seen a tick..
Could anyone offer any help? or theories on what this all could be? Thank you!
My thyroid, b12, and vitamin D were all messed up from Lyme. My LLMD is in family practice so she helped me with everything.
bean----- I'm a bit confused about what you said to me (cave76)
" But this may be helpful to your situation."
Although that information may be helpful to others and thanks for giving it, Perhaps others will benefit.
I had H. pylori years ago and finally eradicated it (although it took several courses, end to end). And I've had it retested several times since then via stool test (negative) since then.
Perhaps you have me confused with another member?
" But this may be helpful to your situation."
Although that information may be helpful to others and thanks for giving it, Perhaps others will benefit.
I had H. pylori years ago and finally eradicated it (although it took several courses, end to end). And I've had it retested several times since then via stool test (negative) since then.
Perhaps you have me confused with another member?
I have had several Lyme tests done and they never come positive however I have never had one sent to Iginex. But this may be helpful to your situation.
Since you have had bloodwork done try getting a test for H. Pylori. It is a stomach bacteria. The true way to test for this is through stool and not blood. This infection is very common in the general population of the United States and even more so in underdeveloped countries and very high in Asia.
Unfortunately, it is not checked for often enough.
When weight kept dropping off, severe muscle pains, joint pains, twitching, dizziness, migraines horrible fatigue, I decided to go to a Gastroenterologist as the PCP hadn't a clue.
Endoscopy and colonoscopy picked up on H. Pylori. If you are positive make sure other household members are checked. Simply by stool is okay at that point as again, this is the way to detect it however mine was picked up on during scopy.
Large antibiotic dosage erradicated this however no one seemed too concerned that my B12 was 267 so a full recovery was still not present. Went to see a neurologist because the fatigue, twitching and weakness were still present and after being reprimanded that I had seen his colleague 6 months prior and nothing found, I explained that I had H. Pylori and thought this was the cause of a B-12 deficiency. After reviewing the notes he immediately, like that moment had me run to the hospital pharmacy to pick up B12 rx and went straight back to his office where he administered the B12.
The explanation from the NL was that any B12 under 400 is prone to neurological symptoms.
Also went to Endocrinologist who after explaining that I had been tracking my TSH, T3 and T4 for the last 6 months that PCP's state are all in "normal range", I noticed the numbers were all over the map from one extreme to the next. Not just a little change but drastically all over. He started me on low dose of Levothyroxine and it sent my numbers completely out of whack then so we found a good dosage and stay at a number where I feel best at. Not everyone can be put into that "range" from the lab. This did consist of getting the bloodwork done by him every month but although annoying it was worth it.
Worth looking into and getting it checked out. Just remember if they tell you blood tell them NO it is detected accurately by stool test. Did homework on this and you know sometimes you have to prove to them !
Since you have had bloodwork done try getting a test for H. Pylori. It is a stomach bacteria. The true way to test for this is through stool and not blood. This infection is very common in the general population of the United States and even more so in underdeveloped countries and very high in Asia.
Unfortunately, it is not checked for often enough.
When weight kept dropping off, severe muscle pains, joint pains, twitching, dizziness, migraines horrible fatigue, I decided to go to a Gastroenterologist as the PCP hadn't a clue.
Endoscopy and colonoscopy picked up on H. Pylori. If you are positive make sure other household members are checked. Simply by stool is okay at that point as again, this is the way to detect it however mine was picked up on during scopy.
Large antibiotic dosage erradicated this however no one seemed too concerned that my B12 was 267 so a full recovery was still not present. Went to see a neurologist because the fatigue, twitching and weakness were still present and after being reprimanded that I had seen his colleague 6 months prior and nothing found, I explained that I had H. Pylori and thought this was the cause of a B-12 deficiency. After reviewing the notes he immediately, like that moment had me run to the hospital pharmacy to pick up B12 rx and went straight back to his office where he administered the B12.
The explanation from the NL was that any B12 under 400 is prone to neurological symptoms.
Also went to Endocrinologist who after explaining that I had been tracking my TSH, T3 and T4 for the last 6 months that PCP's state are all in "normal range", I noticed the numbers were all over the map from one extreme to the next. Not just a little change but drastically all over. He started me on low dose of Levothyroxine and it sent my numbers completely out of whack then so we found a good dosage and stay at a number where I feel best at. Not everyone can be put into that "range" from the lab. This did consist of getting the bloodwork done by him every month but although annoying it was worth it.
Worth looking into and getting it checked out. Just remember if they tell you blood tell them NO it is detected accurately by stool test. Did homework on this and you know sometimes you have to prove to them !
Murph said and I'll repeat:
" With your mix of symptoms, Lyme Disease is, at least, to be considered."
But you'd need the right tests and the right doctors to evaluate them. That's not your usual GP. :(
"levothyroxvin"
I couldn't tolerate levothyroxin---- made me too jittery. But that was before I learned that tablets CAN be split. LOL Levothy. might be the best med for you but if you get side effects that you can't tolerate then ask your doctor if you can split the tablet. Sometimes that's contraindicated but your doctor would know.
I just went to a site that gives the package insert for Levo. and there are a mass of warnings about it.
I tolerate Armour thyroid but our thyroid functions can be completely different. But it's one to ask your doctor about if Levo can't be tolerated.
" With your mix of symptoms, Lyme Disease is, at least, to be considered."
But you'd need the right tests and the right doctors to evaluate them. That's not your usual GP. :(
"levothyroxvin"
I couldn't tolerate levothyroxin---- made me too jittery. But that was before I learned that tablets CAN be split. LOL Levothy. might be the best med for you but if you get side effects that you can't tolerate then ask your doctor if you can split the tablet. Sometimes that's contraindicated but your doctor would know.
I just went to a site that gives the package insert for Levo. and there are a mass of warnings about it.
I tolerate Armour thyroid but our thyroid functions can be completely different. But it's one to ask your doctor about if Levo can't be tolerated.
Lyme is well known (to ILADS docs, who are open minded enough to see Lyme for the complex and varied illness that it is) to cause a variety of imbalances in the body. I don't remember what my B12 level was, but I sure felt better when I started B12 shots. My Vitamin D was surprisingly low since I live in the sunshine state. I had all the symptoms of magnesium deficiency and adrenal fatigue, too. Turns out all of these are associated with a Lyme infection.
Lyme can affect the gut, too, resulting in malabsorption and deficiencies, even in someone who eats healthy. You are wise to ask, "Why?" to your deficiencies given your good nutrition.
Ask for a copy of the Lyme test results. You need to see those. I'll take a gander that you only had a screening test and it was negative. That's what happened to me. I only got a Western Blot because I had it done at IGeneX. IGeneX found 2 Lyme specific antibodies and called it "Positive", even though I was "CDC Negative". I am so grateful for IGeneX.
Docs tend to jump on something they know how to treat, happily writing a prescription for something like a thyroid imbalance, leaving the big question of underlying cause unanswered. That's because they just don't know what it is. I think you need to find a good LLMD.
Lyme can affect the gut, too, resulting in malabsorption and deficiencies, even in someone who eats healthy. You are wise to ask, "Why?" to your deficiencies given your good nutrition.
Ask for a copy of the Lyme test results. You need to see those. I'll take a gander that you only had a screening test and it was negative. That's what happened to me. I only got a Western Blot because I had it done at IGeneX. IGeneX found 2 Lyme specific antibodies and called it "Positive", even though I was "CDC Negative". I am so grateful for IGeneX.
Docs tend to jump on something they know how to treat, happily writing a prescription for something like a thyroid imbalance, leaving the big question of underlying cause unanswered. That's because they just don't know what it is. I think you need to find a good LLMD.
Have you made any steps toward finding an LLMD?
When I was ill with what turned out to be Lyme and babesiosis (one of the common co-infections), all of the 20 MDs I saw looked at my symptoms through their own prism, like the old story of the blind men and the elephant: the man touching the leg thought an elephant must look like a tree, while the man touching the side of the elephant said an elephant must look like a wall, and so on.
Each doc who never seen the elephant that is Lyme will match up the bits the doc is trained to see in his/her specialty and simply ignore the rest as irrelevant.
A Lyme doc will see the elephant, not its bits and pieces. If you need help finding an LLMD, let us know. ILADS, the main voluntary organization for Lyme MDs, has a referral function, if you email to
contact [at] ILADS [dot] org
and tell them what state you live in and in or near what city, and they can give you names from their membership list. If the first one you get is a dud, get another name till you find a doc you click with. Lyme is curable, but it's not a quick fix, so it pays to be comfortable with the doc because you'll be seeing him for a while. That's just the way Lyme rolls.
When I was ill with what turned out to be Lyme and babesiosis (one of the common co-infections), all of the 20 MDs I saw looked at my symptoms through their own prism, like the old story of the blind men and the elephant: the man touching the leg thought an elephant must look like a tree, while the man touching the side of the elephant said an elephant must look like a wall, and so on.
Each doc who never seen the elephant that is Lyme will match up the bits the doc is trained to see in his/her specialty and simply ignore the rest as irrelevant.
A Lyme doc will see the elephant, not its bits and pieces. If you need help finding an LLMD, let us know. ILADS, the main voluntary organization for Lyme MDs, has a referral function, if you email to
contact [at] ILADS [dot] org
and tell them what state you live in and in or near what city, and they can give you names from their membership list. If the first one you get is a dud, get another name till you find a doc you click with. Lyme is curable, but it's not a quick fix, so it pays to be comfortable with the doc because you'll be seeing him for a while. That's just the way Lyme rolls.
So I got my test results today (over the phone) and I would have much rather had my results on paper sitting in front of me... This is what I managed to scribble down.
my Free T3 is supposed to be between 87-178 and mine was 119.. which he said was "fine".
my free T4 is supposed to ideally be around 10 and mine was 7.3
So he wants to put me on a prescription for 25 micrograms (lowest dose possible) of levothyroxvin.
What do you guys think of that?
The other weird thing though was that my Iron saturation is supposed to be over 40% and mine was 29%...
My Folic acid should be 20 or above and mine was 8
My b12 was 400
If i eat a ton of grassfed local meats, eggs, healthy animal fats and TONS of veggies including tons of greens... why are all these levels so low!?
He wants to put me on 1,000mg of folic acid but to me this isn't the answer.
my Free T3 is supposed to be between 87-178 and mine was 119.. which he said was "fine".
my free T4 is supposed to ideally be around 10 and mine was 7.3
So he wants to put me on a prescription for 25 micrograms (lowest dose possible) of levothyroxvin.
What do you guys think of that?
The other weird thing though was that my Iron saturation is supposed to be over 40% and mine was 29%...
My Folic acid should be 20 or above and mine was 8
My b12 was 400
If i eat a ton of grassfed local meats, eggs, healthy animal fats and TONS of veggies including tons of greens... why are all these levels so low!?
He wants to put me on 1,000mg of folic acid but to me this isn't the answer.
If you are unsure of what you might have, the best thing to do is continue searching until you find an answer, which isn't always easy. Sometimes the symptoms could be anything, and Lyme Disease fits "anything" or close top it. I've been there, there now and will keep trying.
As Ricobord said, testing at LGenex is the best way to find out more, along with an LLMD. With your mix of symptoms, Lyme Disease is, at least, to be considered.
As Ricobord said, testing at LGenex is the best way to find out more, along with an LLMD. With your mix of symptoms, Lyme Disease is, at least, to be considered.
Thank you everybody! And thank you cave76 for letting me know about the Falmouth doctor!
Since it's not known if you really do have Lyme or not----this is problematic. But I'll assume that you do........but could be wrong.
A doctor who will test and treat for Lyme is Dr. Sam Donta is in Falmouth MA. He's one of the best!
His information is readily found by just googling 'Lyme doctor in Massachusetts'. That is the first one I saw but I'm sure there will others just as readily found on the Internet.
But there will also be many who 'say' they treat Lyme but instead will rx supplement or herbs to do it. You want someone who follows the ILADS treatment guidelines.
http://www.ilads.org/lyme_disease/about_lyme.html
Good luck and please ask you have more questions.
A doctor who will test and treat for Lyme is Dr. Sam Donta is in Falmouth MA. He's one of the best!
His information is readily found by just googling 'Lyme doctor in Massachusetts'. That is the first one I saw but I'm sure there will others just as readily found on the Internet.
But there will also be many who 'say' they treat Lyme but instead will rx supplement or herbs to do it. You want someone who follows the ILADS treatment guidelines.
http://www.ilads.org/lyme_disease/about_lyme.html
Good luck and please ask you have more questions.
I just noticed you're in MA, which is one of the worst places in the country for Lyme Disease. If your doctor hasn't already tested you for Lyme Disease based on the joint problems, I'd wonder if s/he's is competent. It's possible you were already tested and the screening test was negative.
You need to get a copy of every test ever run. You need to know what the results are. I've been appalled at some stories of what patients have seen in their results that their doctor never told them, things that were important, yet inexplicably dismissed by the doctor.
Having copies of everything makes it much easier to see another doctor, too. They don't have to wait days for official copies from the prior doctor. LLMDs are few and far between in MA. Don't be afraid to go out of state to get treatment. Do what you need to get well. The longer someone has Lyme, the harder it is to treat.
P.S. "Brain fog" is a nearly universal symptom of disseminated Lyme Disease.
You need to get a copy of every test ever run. You need to know what the results are. I've been appalled at some stories of what patients have seen in their results that their doctor never told them, things that were important, yet inexplicably dismissed by the doctor.
Having copies of everything makes it much easier to see another doctor, too. They don't have to wait days for official copies from the prior doctor. LLMDs are few and far between in MA. Don't be afraid to go out of state to get treatment. Do what you need to get well. The longer someone has Lyme, the harder it is to treat.
P.S. "Brain fog" is a nearly universal symptom of disseminated Lyme Disease.
Yeah, Lyme is a real possibility for you. Migrating joint pain is very common in Lyme DIsease. Your doctor should be willing to test you for Lyme based on this symptom alone.
Unfortunately, the screening test (either ELISA or IFA) misses 30% or more of Lyme cases, which means they don't even run the Western Blot, a better test. But that can be false negative, too. This is one of the big controversies, and biggest tragedies in my opinion, about Lyme Disease. The tests miss way too many cases, and yet the people in charge of deciding these tests blindly insist they're highly reliable. This said, you can test positive for Lyme and still have it.
This is why we recommend going to see a Lyme Literate physician. These are doctors who are willing to look beyond the narrow guidelines and see Lyme for the more varied and complex illness that it is. They also order testing at IGeneX, a lab that does more advanced testing than the standard ones. If I hadn't been tested at IGeneX, I don't think I would ever have been diagnosed correctly. IGeneX found my Lyme and Bartonella.
Hair loss and loss of libido are less common symptoms, but LLMDs (Lyme Literate Medical Doctors) are familiar with these symptoms, even if most "mainstream" doctors are not. Lyme likes connective tissue, and the thyroid is full of connective tissue. Many people with disseminated Lyme develop thyroid problems.
Lyme can also affect the hormone control center of the brain, resulting in imbalances. I had a complete loss of libido for a while. I only had one slightly off thyroid level, though. My Lyme seemed to prefer my adrenals, instead. I have had low B12, Vit D, and magnesium as well. I still supplement all 3.
Your healthy eating and supplements sound terrific. Keep it up! It's critical for a well functioning immune system. Don't think, though, that healthy diet and body can always fight off Lyme Disease. Plenty of really healthy people have gotten extremely ill from untreated Lyme when it wasn't caught early.
If you do have Lyme, you've had it for at least 9 months. It's unlikely a 3 week course of Doxycycline will cure you. You'll need months worth, which only a Lyme Literate Medical Doctor will give you. You can find one in your area by contacting a local Lyme support group for a list of names. Also, ILADS or a state Lyme Disease association could be helpful for referrals.
Of course it's a good idea to ask your regular doctor to test you. I'd start with that. But if you do test positive, just know that your regular doc will most likely only give you the "standard" treatment, which will most likely be inadequate.
Unfortunately, the screening test (either ELISA or IFA) misses 30% or more of Lyme cases, which means they don't even run the Western Blot, a better test. But that can be false negative, too. This is one of the big controversies, and biggest tragedies in my opinion, about Lyme Disease. The tests miss way too many cases, and yet the people in charge of deciding these tests blindly insist they're highly reliable. This said, you can test positive for Lyme and still have it.
This is why we recommend going to see a Lyme Literate physician. These are doctors who are willing to look beyond the narrow guidelines and see Lyme for the more varied and complex illness that it is. They also order testing at IGeneX, a lab that does more advanced testing than the standard ones. If I hadn't been tested at IGeneX, I don't think I would ever have been diagnosed correctly. IGeneX found my Lyme and Bartonella.
Hair loss and loss of libido are less common symptoms, but LLMDs (Lyme Literate Medical Doctors) are familiar with these symptoms, even if most "mainstream" doctors are not. Lyme likes connective tissue, and the thyroid is full of connective tissue. Many people with disseminated Lyme develop thyroid problems.
Lyme can also affect the hormone control center of the brain, resulting in imbalances. I had a complete loss of libido for a while. I only had one slightly off thyroid level, though. My Lyme seemed to prefer my adrenals, instead. I have had low B12, Vit D, and magnesium as well. I still supplement all 3.
Your healthy eating and supplements sound terrific. Keep it up! It's critical for a well functioning immune system. Don't think, though, that healthy diet and body can always fight off Lyme Disease. Plenty of really healthy people have gotten extremely ill from untreated Lyme when it wasn't caught early.
If you do have Lyme, you've had it for at least 9 months. It's unlikely a 3 week course of Doxycycline will cure you. You'll need months worth, which only a Lyme Literate Medical Doctor will give you. You can find one in your area by contacting a local Lyme support group for a list of names. Also, ILADS or a state Lyme Disease association could be helpful for referrals.
Of course it's a good idea to ask your regular doctor to test you. I'd start with that. But if you do test positive, just know that your regular doc will most likely only give you the "standard" treatment, which will most likely be inadequate.
Sorry, I have what is called Lyme brain, a fog with memory loss.
Many people don't remember a tick or getting a rash, I never did.
Many people don't remember a tick or getting a rash, I never did.
Forgot, when I first found out I had Lyme my b12 levels as well as magnesium and vitamin D were very low. I had to take prescription meds until they got normal. Now I can take OTC supplements.
Hi there,
If you just said you had hair loss, I would say no Lyme. I had terrible hair loss when I became hypothyroid from Lyme. When you find the right dosage of thyroid meds, it will lessen a lot.
As for your other problems, it could be Lyme. If it were me, knowing what I do now, I would find an LLMD pronto (Lyme literate Dr). You can contact ILADS.org and ask them to send you names of LLMD near you or just google your city and LLMD.
LLMD use the only lab that tests correctly for Lyme and its co-infections. That's right, you may get a bonus infection called a co-infection. Most of us have at least one. I have 3.
Regular doctors don't test for Lyme correctly and they definitely don't give you long term antibiotics.
Let us know what other questions you have. You are very smart for asking about Lyme in your situation.
If you just said you had hair loss, I would say no Lyme. I had terrible hair loss when I became hypothyroid from Lyme. When you find the right dosage of thyroid meds, it will lessen a lot.
As for your other problems, it could be Lyme. If it were me, knowing what I do now, I would find an LLMD pronto (Lyme literate Dr). You can contact ILADS.org and ask them to send you names of LLMD near you or just google your city and LLMD.
LLMD use the only lab that tests correctly for Lyme and its co-infections. That's right, you may get a bonus infection called a co-infection. Most of us have at least one. I have 3.
Regular doctors don't test for Lyme correctly and they definitely don't give you long term antibiotics.
Let us know what other questions you have. You are very smart for asking about Lyme in your situation.
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