Lyme and endocrine - how to treat together

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jasrich
Regular Member


Date Joined Dec 2008
Total Posts : 29
   Posted 1/16/2009 3:59 PM (GMT -6)   
For those of you with LD and endocrine problems, either caused or exacerbated by LD (as I believe my Hashimotos has been), how do you go about treating the LD and thryoid together?  I've been on synthetic T4 (Synthroid and now Levoxyl) for five years now.  In 2007 I tried to switch over to Armour thyroid because I was feeling increasingly unwell on Synthroid.  I had a hard time tolerating the Armour so, after doing a lot of reading about thyroid and adrenals, I started taking adrenal glandular supplements and then hydrocortisone (HC) which I took for a year.  I didn't do well on that combo at all but I tried to stick with it and did so for over six months before giving up on the Armour and starting to wean off of the HC.  Weaning was painful and took me 6 months.  I didn't know that I had LD at the time or I wouldn't have messed with the HC but that's water under the bridge now.  Now I'm back to just taking T4 - 137mcg of Levoxyl - and I'm much worse off than I was before I started with lots of thyroid SX and neuro SX that I don't think are thyroid at all but LD.
 
I have an appt with Dr. J in SC on 3/25 and an RX for ABX from the LLMD that I've consulted with a few times and who ran the Igenex labs on me in November, but I'm waiting to start that TX until after I've been seen at the Cleveland Clinic on 2/10 (my wife and family are insisting).  In the meantime, I'm reading and wondering how I'll feel on the ABX, herxing, and with hormones unbalanced.  I've read that LD is known to disrupt the endocrine system and I believe that mine has always been a bit out of whack - hereditary - and that the last year messing with thryoid meds and HC gave the LD a toehold to do more damage than it had ever done before.

If anyone has experience to share I would appreciate it.
 
Thanks,
 
Jasrich

11/26/08 Igenex positive
Current Rxs 12/17/08: Levoxyl 100mcg, SRT3 5mcg BID, Klonopin .5mg, Seroquel 12.5mg, Ibruprofen PRN (daily), Acidopholus/Bifidus, digestive enzymes, vits B-50, B5 500mg, B-12 1cc 2x/week, Lithium 5mg, fish oil 1500mg/day


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 1/16/2009 7:31 PM (GMT -6)   

Hi Jasrich.  I am sorry you are dealing with so much.  Lyme disease can affect thyroid, adrenal, and hormone function.  I think it is a good idea for anyone with Lyme to have these levels checked by a knowledgeable doctor.

Does your thyroid doctor check your Free T3 and Free T4 in addtion to the TSH and other levels?  This is important.  Did you have your adrenal function tested?  Which tests were done?  Synthetic T4 works for some people, but it does not work for everyone.  I also have Hashimoto's.  I was started on Synthroid and switched to Armour.  It is true that some people who have trouble with thyroid meds have adrenal issues.

How long have you had Lyme?  Have you done any treatment?  Have you been tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma?  This is important.

If you have been diagnosed with Lyme, you may want to call Dr. J's office to see if you should start the meds before your appointment.

Hang in there okay?  It can take time to manage everything, but it can be done.

 


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 1/16/2009 8:51 PM (GMT -6)   
Ticker: What is Free T 3 and Free T 4? I just got my results today and all he did was TSH and T4 (says thyroxine). What does the "free" part mean and are those different from just T4? Thanks

jasrich
Regular Member


Date Joined Dec 2008
Total Posts : 29
   Posted 1/17/2009 4:48 PM (GMT -6)   

Hi Ticker, I understand from my sister, Northlover, that you're one of the vets around here and to listen up smilewinkgrin .  Thanks for responding.

My docs do check the frees, and we've checked thyroid ABs lately, but only at my urging. If my DO and endo had their way all that they would check are TSH and maybe a T4.  No one believes in checking FT3 around here, even my LLMD, who I went to not for a Lyme DX but because he's one of the closest integrative med docs to me. He just tells me to take my temps.  I have also had adrenal function tested with AM cortisols that have come in around 11 or 12 since I weaned off of the HC three months ago, and two ACTH stim tests that were "normal" in that my levels doubled, but my starting level was low normal both times, same as it usually is, so my first cortisol level would be around 11 and the last was 22.  I've also had aldosterone and renin checked a couple of times and aldo was slightly low but "normal" and renin was slightly high but "normal" both times.  I had LH and FSH tested once and they were normal.  I just had TSH, FT3, FT4 and an AM cortisol done last Tuesday in prep for my endo appt on Monday so I'll have fresh lab results on Monday.  Last labs were in November and my TSH was .4, FT4 was 1.76 with the top of the range being 1.76, and FT3 was 3.4 with a range of 2.3 - 4.2.  AM cortisol was 12.6. TPO-Ab were 705 with a max of 34.  I don't make the other thyroid ABs so at least I probably don't have Hashis and Graves.  Also, my calcium always tests normal so that should rule out a parathyroid problem.  My vitamin D and B-12 always test low so I inject B-12 2x/week now (now I test off the charts for it) and I was supplementing D3 until I started seeing my current LLMD who told me to stop b/c he's into treating with the Marshall Protocol which pretty much rules out any vit D supplementation of any kind, including from sunlight.  Ferritin has tested normal every time.

As I wrote above, not doing that well on Synthroid is why I tried Armour and then added HC so that I could support the adrenals better so that I could tolerate the Armour. I found integrative medicine docs to RX the Armour and HC b/c my docs here didn't believe in it, but none of them could ever figure out why I wasn't doing well on the combo or why it was so painfully slow for me to wean off of the HC.  Now I'm back on T4 (Levoxyl this time) 137mcg.  I tried adding SRT3 to the T4 in different combos but was bothered by increased GI SX, anxiety, insomnia (worse than usual despite my sleep med cocktail of Klonopin and Seroquel), and aching joints, especially my hands. The GI calmed down quite a bit for a few weeks which I credited to taking more probiotics and starting to drink Kefir regularly.  It fired up again, however, when I increased my Levo from 125mcg to 137mcg and it did the same thing whenever I try to add any kind of T3, whether in Armour, Cytomel or any dose of SRT3.

If I have Lyme, I've had it since I think summer of 2003 (Northlover and I have been comparing notes and trying to figure that out).  I did a one month empiric trial of Minocin+Zithromax+Diflucan starting in the middle of Oct. and ending in November, waited a week and then did the Igenex labs for Lyme and Babs.  Babs came back negative but Lyme came back with a few positives - not meeting CDC criteria for DX of course.  When I did the Igenex labs in 11/06 I did the east coast panel, or whatever, and it tested for everything and all came back negative.  This time my doc only tested for Lyme and Babs and Mycoplasma, again, at my urging, b/c I had mycoplasma walking pneumonia a few years ago. That test came back positive for Mycoplasma ABs but no active infection.  We didn't test for Ehrlichiosis or Bartonella.

My understanding from someone from this forum who sees Dr. J is that he does not test for the co-infections - he just treats for all of them.  I have spoken to people in his office and asked if he offers second opinions or records reviews and I was told no.  I get the feeling that no matter what I ask they aren't going to give any kind of direction or advice until I'm a patient there so I made the first available appt which is 3/25.  I will call and ask about going back on the ABX pending my appt there though.  I'm going to the Cleveland Clinic on 2/10 so, even though I have RX's for Minocin, Zithro, and weekly Penicillin IMs, I'm holding off until after I get back from CC so that I don't go there sick from side-effects and/or herxing. From what I have read, I don't know that Dr. J would start me on this combo of ABX, but that's what my LLMD RX'ed.  I asked him about the drug interaction warnings about Minocin and Penicillin that folks here warned me about and he acknowledged them but said that he and other docs still use them in that combo.

It often seems like this isn't manageable at all so it's good to hear that others with similar issues are managing well.  Do you think that your Hashis preceded your Lyme and the Lyme made it worse, or that Lyme started it all? Did you find that once you had the Lyme under control that the thyroid SX got easier to handle and/or that you could reduce your thyroid meds?

Thanks,

Jasrich


11/26/08 Igenex positive
Current Rxs 12/17/08: Levoxyl 100mcg, SRT3 5mcg BID, Klonopin .5mg, Seroquel 12.5mg, Ibruprofen PRN (daily), Acidopholus/Bifidus, digestive enzymes, vits B-50, B5 500mg, B-12 1cc 2x/week, Lithium 5mg, fish oil 1500mg/day


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/17/2009 9:21 PM (GMT -6)   
Please explain what you mean when you say you cannot tolerate Armour or synthyroid and why is this common? I cannot take my armour either. Even though my dose is very low, I get hot flashes and cannot sleep. What happens when you adrenals are affected?

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/17/2009 10:13 PM (GMT -6)   
My doctor said his toughest patients to treat are those who are hypothyroid.

Luckily, my endo and Lyme doc are in touch about my case.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/18/2009 12:26 AM (GMT -6)   
I believe this article will answer the Free T3/Free T4 question:
 
 
Also, visit http://www.thyroid-info.com/ to understand more about thyroid/hypothyroidism.
Mary Shomon has done a wonderful job in the past 20 years of advocating/educating thyroid patients.  Search out T3 supplementation for hypothyroidism, as well.
 
I am a Hashimotos girl.  My daughter, sadly, inherited this weak link and the Lyme and co-infections have wreaked havoc causing incredible and indescribable suffering.

When hypothyroid, we attempted a couple years ago, a minimal dose of T4.  Reacted.  Went hyperthyroid w/in a week.  This was just before we found the root culprit to be Lyme and a very late dx.  Today, we are addressing her thyroid w/a licensed naturopath in CT who specializes in women's health care, esp. when disease has complicated the healing and balancing of such.  Pure European homeopathics and roots and shoots of herbs specific for the patient who has suffered adrenal exhaustion in addition (which can be common) seem to be what Heather's body absorbs well and is nourished with.  She is on an all natural form of thyroid support (NatureThroid).  It likes her alot!
 
So many of our ILAD physicians tell me that hormones are the most difficult to address for Lyme patients.  We do have a couple of experts on the east coast who address hormones for Lyme patients.  They are rare and brave souls, but they do understand the endocrine system in the midst of the pathogen.

We are seeing slow, but steady progress here and are hopeful. 
Ticker may have more to add to help.
Blessings, Sojourner
 

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 1/18/2009 7:48 AM (GMT -6)   

Hi!  Welcome to HW.  I too believe that my (inherited) adrenal issue became apparent to me after getting Lyme/Mycoplasma.  Of corse, to most docs my adrenal 'issue' is non-existant (it is not addisons or cushings).  But my levels are skewed, and I was diagnosed with late onset CAH.  The existence of diagnosis (the one for 3 beta CAH late onset) has been 'debunked' by the experts.  So I have a relative defficiency in cortisol regulation, is what my former endo ended up saying.  So with that, he won't see me, because of the lyme.  He's a reproductive endo anyway, who happened to do his dissertation on 3 beta.  Like you, I feel like I should've never gone on dexamethasone or hydrocortisone (didn't know I had lyme), it made me start a series of adrenal crises after I got off of them. 

As far as how to answer your question on how to treat concurrently, I have the same question. I cannot handle antibiotics because my adrenal poops out and continually wakes me up with severe dehydration throughout the night.  And I cannot take steroids, because they will make the lyme worse.

What I'm thinking about doing is seeing if I can get a picc line put in for lactated ringers, see if that will stabilize me.  I'm also supplementing for methylation detox pathway issues/mutations, hoping that this will help.

I hope we can get some answers plugging away at this.  Hey, just a note for you: I applied to the Cleveland Clinic about 2 years ago.  I was denied because of having a positive lyme test (LP/spinal tap).  They said that Lyme is not their specialty.  Did things change?  If not, I really wouldn't recommend you going there.  The mayo clinics are not known for alternative treatments or addressing lyme disease appropriately.

I would love to have an endocrinologist following me, but I cannot find one.  I work with an integrative physician, but he too would love for me to have an endo.  Since I have two reportedly 'controversial' diagnoses (Late onset CAH and Lyme), I haven't found one who will work with me.  If anyone here has any suggestions (NY/NJ/CT area), I'd really appreciate it!

Tracy


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/18/2009 8:41 AM (GMT -6)   

Well, I'll just send you that life line on a little email, Tracy!

Blessings! ~d


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 1/18/2009 11:14 AM (GMT -6)   

Hi Dowa.  In my experience, the majority of doctors will not run the Free T3 and Free T4 unless you request them.  It is my understanding that these levels indicate the amount of hormone acually available.  I suggest having these tests run along with the thyroid antibody tests.  They are all simple blood tests.  Do you have a thyroid disorder?

I have not had good experiences with endocrinolgists.  Many of them go only by the TSH result instead of considering all results combined with the person's symptoms.  Thyroid disorders can cause many symptoms that are similar to Lyme.  I have seen several endos, holistic doctors, and regular GPs regarding my thyroid.  I finally found a doctor who is willing to work with me by bringing up my Free T levles.  Many people who have a thyroid disorder feel their best when these levels are in the upper 1/3 of the range.  I take a combo T3/T4 medicine and an additional T3 med, and it is helping.

If you have a thyroid disorder, I highly recommend learning as much as possible.  Mary Shoman's site has a lot of great information and a good forum.  Some books I recommend are "Living Well with Hypothyroidism:  What Your Doctor Doesn't Tell You..." by Mary J. Shoman, "Thyroid Power" by Richard L. Shames, M.D., and "What Your Doctor Many Not Tell You about Hypothyroidism" by Ken Blanchard, M.D.


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 1/18/2009 11:29 AM (GMT -6)   

jasrich, you are lucky to have Northlover as your sister!

I agree that most doctors will not run these tests which are more important.  Was the corisol testing you had done blood testing?  Can you post the ranges for your results?  You may want to consider having saliva testing done.  Some doctors believe this is more accurate, some do not. 

There is room to increase your Free T3.  It seems like you may do better adding a T3 only med, such as Cytomel, so that you do not further increase your Free T4.  What dose did you start on?  Maybe it was too high to start with.  As far as I know, positive antibodies--and yours are very positive--indicate Hashimoto's. 

Being Vitamin D deficient can cause a lot of symptoms.  I suggest reseraching this.  I believe if somone is deficient, they should supplement.  This is only my opinion.  Many people who have Lyme are Vitamin D deficient. 

You may want to consider having the co-infection testing done before your appointment with Dr. J.  It typically takes about three weeks to get the results and then you would have them for your appointment. 

I was not diagnosed with Hashimoto's until after I was diagnosed with Lyme; however, thyroid problems run in my family. 

Lyme disease can definitely affect multiple systems of the body.  It is important to have all of these things checked so you can get individualized treatment that will most benefit your case.  It seems overwhelming, but it can be managed!


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 1/18/2009 11:36 AM (GMT -6)   

nefferdun, what dose of Armour did you start on?  Have you had your levels checked recently? 

Have you ever had your adrenal function tested?

 

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 1/18/2009 11:52 AM (GMT -6)   

Hi Tracy.  I am not familiar with CAH.  Have you tried contacting a support group or organization for a doctor recommendation?  You may also want to try calling a compounding pharmacy in your area to see if they could recommend a doctor. 

I hope you can get things sorted soon.

 

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/18/2009 2:15 PM (GMT -6)   
Ticker, I used to take only 15 mg of armour. That is a very low dose but it did wonders for my energy etc. I had radiation to shrink my adnoids when I was a child which causes problems with the thyroid and I was exhausted most of my life with a serious hormonal imbalance. My tests were "within normal" but I wasn't, so I was given medication which changed everything. After having my first child 24 years ago, I got thyroiditis (hyperthyroid) for about 6 months - so I know what that feels like.

Now if I take the armour I feel hyperthyroid within days. I would rather be fat, cold and sluggish than hyper, nervous, sleepless, irritable and HOT.

Are you guys saying that lyme can cause a problem like this? I would never have thought to tell the LLMD about it so glad you brought it up.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 1/18/2009 9:58 PM (GMT -6)   

Hi,

So sorry to hear about the thyroid struggles.  :-( Yes, Lyme can underlie a lot of systemic dysfunction.  In my mind though, it seems that lyme brings out some 'carrier' symptoms, or dormant ('opportunistic') infection.  So for folks who might be within range of something but closer to the cutoff, lyme can push you over the edge.  It seems to me that lyme can affect the areas of the body that struggle the most.

Thanks for asking, Ticker.. Yes, I have been involved with the CAH foundation, have gone to conferences and have visited with the few specialists there are on it.  They disagree with each other, sadly enough.  Most are pediatric, as LO-CAH is usually diagnosed during infancy or childhood.  It is unfortunate that the two in this area who will see adults, do not want to get involved with someone with Lyme.  They just say that it is not their specialty; like the mayo clinics, didn't even want me to schedule an appointment.

I keep plugging away, and look forward to when there will be less controversy and more education on the MD level with illnesses such as these.


jasrich
Regular Member


Date Joined Dec 2008
Total Posts : 29
   Posted 1/21/2009 3:30 PM (GMT -6)   
Hi Ticker, I've had many AM cortisols done - last was last week and it came back at 13.6 with a range of 4-22.  I did saliva labs last year and they came back somewhat depressed for AM and 5PM, normal for noon and 11PM.  That's what got me started on treating my adrenals with glandulars and then hydrocortisone (HC).  Of course, now I know that HC was probably a big mistake if I have Lyme.  I'm now supplementing with licorice root extract and looking for a good adaptogen blend to support the adrenals.
When I originally asked my endo to give me Armour he refused and gave me 5mcg of Cytomel instead and reduced my T4 from 125mcg to 112mcg.  I did not do well on the combo - it really fired up my GI SX, made me anxious and made insomnia worse. I also sweat a lot.  In hindsight, that's the same reaction that I have had every time I have tried to add anything with T3 to my regimen, including Armour and SRT3 (several different dosages).  Posting about this on some thyroid forums I was told that T3 is hard on the adrenals, have I had them checked, done saliva testing, taken HC, etc., and that's what started me down the path of trying to find docs that would RX HC.  Recently I have tried the following (RX'ed by either my endo or my integrative med doc/LLMD)
Dropping the T4 and just taking 22.5mcg of SRT3 BID - crashed and burned, horribly hypo, freezing cold, tired but couldn't sleep, depressed;
100mcg of T4 + 5mcg of SRT3 BID - pretty much the same result as above;
112mcg of T4 + 5mcg of SRT3 BID - same;
125mcg of T4 + 5mcg of SRT3 BID and then reduced SRT3 to 2.5mcg BID - this was more like the Cytomel - GI got bad, more anxious, worse insomnia, and, a new SX, hands aching horribly like over-night arthritis in addition to my usual back, knee, etc pain.  The difference here is that I started this a couple of weeks after I finished the month trial of ABX for Lyme so maybe some of the SX, and especially the aching hands, was herx.  At least that's what my LLMD thought.
So, I stopped with the SRT3 for now and went back to just T4 (137mcg) so that I can get relatively stable before my big adventure at the Cleveland Clinic in two weeks.  My last labs were:
TSH: .5 (with a range of .4 - 4) and FT4 1.76 (with a max of 1.76).  I asked for a FT3 but the endo ordered a total T3 instead (typical) and it came back at 118 with a max of 300 something (don't have them in front of me).  With my TPO-ABs, there's very little doubt that I have Hashis.  I just wonder how much worse it is now since I did the year on HC and the Lyme has gotten worse.
I was on vitamin D but LLMD took me off of it b/c he believes in the Marshall Protocol which says that D is bad.  I've tested low for it every time except for after I had been supplementing it for a few months.  Since I'm not doing the MP maybe I should start it up again. I intend to ask Dr. J about it when I see him in March.
I'm told that Dr. J doesn't test for the co-infections but he treats for all of them.  Are you saying that I should go ahead and get them done anyway?
Thanks again.
jasrich
 
ticker said...

jasrich, you are lucky to have Northlover as your sister!

I agree that most doctors will not run these tests which are more important.  Was the corisol testing you had done blood testing?  Can you post the ranges for your results?  You may want to consider having saliva testing done.  Some doctors believe this is more accurate, some do not. 

There is room to increase your Free T3.  It seems like you may do better adding a T3 only med, such as Cytomel, so that you do not further increase your Free T4.  What dose did you start on?  Maybe it was too high to start with.  As far as I know, positive antibodies--and yours are very positive--indicate Hashimoto's. 

Being Vitamin D deficient can cause a lot of symptoms.  I suggest reseraching this.  I believe if somone is deficient, they should supplement.  This is only my opinion.  Many people who have Lyme are Vitamin D deficient. 

You may want to consider having the co-infection testing done before your appointment with Dr. J.  It typically takes about three weeks to get the results and then you would have them for your appointment. 

I was not diagnosed with Hashimoto's until after I was diagnosed with Lyme; however, thyroid problems run in my family. 

Lyme disease can definitely affect multiple systems of the body.  It is important to have all of these things checked so you can get individualized treatment that will most benefit your case.  It seems overwhelming, but it can be managed!


11/26/08 Igenex positive
Current Rxs 12/17/08: Levoxyl 100mcg, SRT3 5mcg BID, Klonopin .5mg, Seroquel 12.5mg, Ibruprofen PRN (daily), Acidopholus/Bifidus, digestive enzymes, vits B-50, B5 500mg, B-12 1cc 2x/week, Lithium 5mg, fish oil 1500mg/day

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