Topic: In pain, fatigue, depressed: Pull out those thyroid tests and reexamine them!!
Bugg
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posted
Your thyroid may be causing you more problems than you realize and your doctor may have missed it. I challenge you today to go find the copy of your latest labwork on your thyroid. Don't have it? Call your doctor's office and ask him to fax a copy of your lab results to you.
Look at your TSH. You may have a lab that puts it at 3.11, which looks normal, because it falls in the middle of the reference range of .34-5.6 given by the lab. WRONG!!! In 2002, the American Academy of Endocrinologists revised the guidelines to state that the normal range is .3-3.0. Anything over 3.0 is abnormal, in most cases (even if it's scored as normal on your lab's reference range of .34-5.60, for example).
In fact, PEOPLE WITH CHRONIC ILLNESSES CAN HAVE ANTIBODIES which attack the thyroid (Hashimoto's) and make it extremely difficult to assess thyroid abnormalities by looking at the TSH. Some endos are now recommending antibody thyroid bloodtests along with the TSH tests.
However, you need to keep in mind that you can still score in the normal reference range on your thyroid tests and still have hypothyroidism or hyperthyroidism...your doc needs to perform a clinical diganosis and not rely solely upon the tests.
My previous LLMD told me he doesn't even test for thyroid problems in his chronically ill lyme patients because he knows 9 times out of 10 it's going to be an issue.
But you say to me, "I treated my thyroid years ago with Armour, for example, and it did nothing to help my fatigue."....
Are you sure you had the right dosage? Are you sure you didn't need another kind of thyroid med like Synthroid?
But you say to me, "I manipulated my thyroid meds to no avail and still had the fatigue from hell."----Have you retried thyroid meds after you treated for other co-infections such as babesia which can give you bone-crushing fatigue???
This is EXACTLY MY STORY. I tried Armour years ago and all it seemed to do for me was make me even more tired....Most recently, after treating for babesia, I am NOW responding to Armour...
Two days ago I made a major discovery. I realized that I have been suffering from hypothyroidism. My LLMD has been telling me my thyroid tests were normal because he's been using the old reference ranges. Two days ago, I asked to see the results myself and I'm actually above the normal limit and I HAVE ALMOST ALL OF THE SYMPTOMS OF HYPOTHYROIDISM including muscle pain/aching/joints popping/fatigue/brittle hair/brittle nails/depression.
I started treating with Armour two days ago and already my pain has gone from an 8 down to a 3!! This is the first morning I woke-up and didn't feel like my toes were going to break-off when I starting walking on them...Believe me, I've tried EVERYTHING for the pain..all of the supplements etc and nothing has helped like this thyroid med...
But you say, "I have treated lyme and the co-infections and my thyroid and I still feel like *&^%!" Have you had tests run on your pituitary gland to see, for example, if you're short on growth hormone? Also, have you checked your adrenals lately?? (don't forget the PTA axis Burrascano talks about)...
Also, are you deficient in certain hormones like DHEA or certain vitamins like magnesium or zinc???
A great site, that's been mentioned on this forum several times, is www.thyroid.about.com.
Sorry for the long post but perhaps this will help someone. I think it's important to examine our own labwork and to remember that treating this disease is a process.....what may not have helped you two years ago could really help you now after you've been battling the disease longer...
...what you may NOT have been deficient in a year ago is something, like mag, that you may need more of now....
Hang in there!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
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posted
Someone just asked me to bump this up for others to read...
Posts: 1155 | From Southeast | Registered: Oct 2005
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cantgiveupyet
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Member # 8165
posted
good post Bugg.
My TSH was 1.98 pre lyme, now on armour its around 1.5 I have to recheck my recent labs.
Armour did help with my fatigue.
when i first got sick most of the ER doctors felt my thyroid was acting up.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
bugg,
i promptly got out my little purse book showing my ongoing test results of all the MAJOR THIGNS.
last test done 12/10/97 was 2.94
i'll make a note about 3.3 ... OVER ABNORMAL *****************************************
later, i'll look thru current labs where it shows the low/high ends for each test!
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Bugg
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posted
Everyone--
I forgot to mention MAKE SURE YOU ARE TAKING YOUR THYROID MEDS FIRST THING IN THE MORNING AT LEAST ONE HOUR AWAY FROM EATING BREAKFAST or they won't work very effectively. Also, watch out for the supplements like iron that may interfere with absorption. Incidentally, recent medical literature suggests some people actually even do better taking it at night right before bed...
BettyG--
That's very close to 3.0...Have you looked up hypothryroidism??...opitmal range is 1-2 for most people....Are you especially fatigued/drepressed/hair loss/brittle hair/nails/muscle aches/aches in arches of feet and toes..... Also, don't forget that if your antibodies are attacking your thyroid (Hashimotos) that you may have a normal thyroid test but still have hypothyroidism......Just like lyme, your doc should look at the clincial signs and the tests....
Cantgiveupyet--Thanks so much for the response and for your great comments on this board...
Posts: 1155 | From Southeast | Registered: Oct 2005
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I am on Armour, have Lyme and co-infections. I don't know much about thyroid - my learning curve has been Lyme (was just diagnosed in March).
I pulled out my labs as my last blood check my LLMD wanted to check my thyroid again, and decided to up my dose.
Anyway, I am not seeing anything about TSH, only T-4 Free (mine was .9)and T-3 Free (mine was 246). I guess I'll have to read the thyroid website you noted; thanks for info.
Posts: 566 | From West Coast | Registered: May 2008
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bettyg
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posted
quote:Originally posted by Bugg:
BettyG--
That's very close to 3.0...Have you looked up hypothryroidism??...opitmal range is 1-2 for most people....
that's what i had..under/hypo until 4 yrs. ago when i went to 2nd llmd; she determined i had HASHIMOTO..
Are you especially fatigued/ 24.7 !!! ****************************
drepressed/ YES
hair loss/brittle hair/nails/ YES
muscle aches/aches in arches of feet and toes..... YES
Also, don't forget that if your antibodies are attacking your thyroid (Hashimotos) that you may have a normal thyroid test but still have hypothyroidism......
Just like lyme, your doc should look at the clincial signs and the tests....
i have my thyroid tested YEARLY; but i'll keep this in mind as this month i'll need to schedule for THYROID BLOOD TESTS ANYWAY; with so many meds i'm on; hard to keep them straight WHICH blood test i'm doing since i have diabetes 2.
disturbedme
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Member # 12346
posted
I have hypothyroidism. Didn't know it was a problem until I got very sick and was trying to find out what was wrong with me. Went to the ER and all they found out was that I had hypothyroidism.
Went to the endo and he wanted to test me again for it because he didn't trust ER results. After weeks (of feeling like I was dying), he told me that I did have hypothyroidism and he put me on medicine. This is the part that was bad because it didn't help me feel better at all. And my problem was that I truly believed it was the type of thyroid meds or something or other with my thyroid and wouldn't let it go not even when my levels were in the normal range.
Come to find out, it's been lyme disease all along. Many of the hypothyroid symptoms can easily be lyme symptoms as well.
I fought for hypothyroidism for nearly a year because I thought that was truly my problem, even after I had normal/optimal results. I wasted a year of what I could have been using to find out what was REALLY wrong with me.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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savebabe
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Yup....I recently had elevated tsh and it can make you feel like absolute %$@#!
Thanks for posting about the reference range, I had no clue that anything about 3.0 is abnormal.
Great thread!!
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Boomerang
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posted
Hey Bugg. Good to see you!
Thanks so much for the heads up. Will check it out.
Glad to hear you are feeling better!
Posts: 1366 | From Southeast | Registered: Sep 2005
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daise
Unregistered
posted
Hi Bugg,
I was severely hypothyroid at a TSH of 75! Here's her site: http://thyroid.about.com/ Mary Shomon's book is Living Well With Hypothyroidism. It may be at your lbrary.
posted
I have been hypo for 11 years now. It is so funny never looked into lyme because many of the same symptoms are the same, and very hard to tell apart.
I always feel great between 1 and 1.5, which I believe is the most level range. Anything over 2 I believe in the Mary Solomn book is at risk for hypothyroidism. Yes 3 is better than 5 ,but I still think it should be lower.
When I got sick 6 months ago in my thyroid panel only T3 free was high. Very strange for hypo.
All my best Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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Bugg
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posted
Yes, it can be VERY CONFUSING for lyme patients to try to distinguish between borrelia burgdorferi/co-infections causing problems versus hypothyroidism. I think some of your posts/stories, unfortunately, illustrate that fact quite well.
I think, for me, an important point to keep in mind is that if you've been treating for lyme and "company" and you still feel HORRIBLE, you might want to really examine that thyroid and your TSH levels.
As Disturbedme (the poster above) suffered through, if you don't treat the lyme and co-infections then you're not going to make much headway with the thyroid. In many lyme cases, THE THYROID IS THROWN OFF BECAUSE OF LYME DISEASE.
If you've been treating for awhile and not seeing much progress, I STRONGLY URGE YOU TO HAVE YOUR TSH level tested and the Antibodies Thyroid test. I understand that Quest Diagnostics is a good lab for testing this(bloodwork test).
IN ONLY FOUR DAYS, YES FOUR DAYS, I have gone from being in severe fatigue, muscle pain/weakness (especially in my legs)which has kept me home-bound/couch-bound to helping a friend move/lift furniture for two hours.
Please understand I'm not "cured" and that's NOT WHAT I'M SAYING. I just strongly believe treating the thyroid can help many feel better...
Earlier in my treatment for lyme when I couldn't even add or read a sentence, the thyroid meds DIDN'T REALLY DO THAT MUCH FOR ME. NOW, after having treated for lyme and babesia, I'M SEEING A BIG DIFFERENCE WITH THE THYROID MEDS...
I'm concerned many on this Board don't realize that the Academy of Clinical Endocrinologists changed the normal TSH reference range to .3 to 3.0. I'm also concerned many think a "normal" test automatically means there's nothing wrong with your thyroid.
Also, remember my severe magnesium deficiency problems I discussed in some other posts? I was reading a study recently by the NIH which discussed how HYPOTHYROIDISM CAN CAUSE MAGNESIUM DEFICIENCY (it pushes it from the cells...)
So, your bloodwork may show that your mag levels are normal but your actual tissues may be highly deficient causing severe tightness, cramping, twitching....For some, the way they tell if they are mag deficient is by loading mag.
For me, it seemed no matter how much mag I put in my system, it was never enough. Now that I'm treating my thyroid, my mag deficiency issues are slowly getting better...
I really think lyme does a number on the endocrine system. My next step is to try to find a great endocrinologist...
Take Care!
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cantgiveupyet
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Ok, here are my latest labs done in Dec 07
T3 uptake 31 reference range 22-35
T-4 total 9.5 reference range 4.5-12.5
Free t4 index (T7) 2.9 Reference range 1.4-3.8
TSH 3rd generation w/reflex to FT4 1.40 Reference range .40-4.50
this was done with Quest. and before my most recent hunger and weight loss episode.
when healthier my TSH was around 1.98
Anyone have any opinions.
Im on armour 15mg
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Bugg
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Cantgiveupyet--
It's hard for me to make any assessment based on your scores. Your thyroid tests don't really bring anything in particular to light for me...
Did they run the antibodies thyroid test? If you think you're having problems with your thyroid, were you tested for Hashimotos or Graves disease (antibodies issues with the thyroid)?
Do you know if your pituitary and adrenals are in good order? As Burrascano has written, all three work together to help you feel better (the PTA axis)..
What "clinical" symptoms are you currently experiencing???
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Bugg
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Cantgiveupyet and others looking at thyroid issues:
The antibody thyroid tests, I realize, are quite expensive and so many don't want to do them. Instead, if I were beginning to examine thyroid issues, before I did anything else, I would have the following tested:
I would also look up the clinical symptoms of hypothyroidism and hyperthyroidism.
Additionally, I would look at other facts which may be impeding the health of my thyroid. For example, if you're hyperreflexive when the doc taps your knee, that's a strong indication you may also have magnesium depletion and your DHEA is low
(Remember, though, DHEA is a hormone and I wouldn't attempt to do anything with hormones etc without doctor supervision...in fact, the only reason I would take DHEA is because I'm so low in it...there are concerns that too much of it could perhaps lead to breastcancer..etc..not enough is known yet)
In those with autoimmune problems, it may take supplementation of both DHEA as well as magnesium to get the thyroid levels adjusted.
Some endocrinologists also think that the TSH levels for those with autoimmune disorders should be even lower....anywhere from .5-1.0....there's obviously debate about this....
Don't forget to make sure you're taking your thyroid med at the right time away from food and also that you're on the right med for yourself....
Armour works well for many but some need Synthroid or Cytomel and specific supplements with them....
Good Health to you guys!!!
Posts: 1155 | From Southeast | Registered: Oct 2005
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cantgiveupyet
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Bugg- I was able to force one dr into running the antibodies and they were negative.
I had one LLMD say I didnt have lyme but had thyroid issues, he also said I had cushings. I had a MRA of the brain and at the same time an MRI of adrenals nothing was found.
The endocrinologist almost laughed at me when he heard cushings, im so thin and frail...look nothing like a cushings patient.
My cortisol is high in the AM and PM. DHEA is ok or in range.
My symptoms are,
my hair is dull interstitial cystitis, vulvodynia, complete body stiffness, severe pelvic muscle stiffness and trigger points constant hunger weight loss despite increased appetite( i literally can out eat a large man) never really feel tired symptoms flare during ovulation painful periods shortened periods with lighter flow
the constant hunger with little weight gain is what draws me to the thyroid. negative for diabetes regular and insepidus(sp)
and dr from the beginning have mostly thought my symptoms are hormonal, yet blood tests usually check out ok, except the high cortisol.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
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bugg, thanks so much for starting this post; very interesting!
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Bugg
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posted
Cantigiveupyet--
I think you may have already examined this...... but have you looked into mycoplasma h. and ureaplasma as causes for your illness?
Those, more than anything, jump out at me from your list of symptoms...
BettyG--Thanks for the kind words and for all of your hard work on Lymenet...
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cantgiveupyet
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Bugg, ive been negative for both of those thru PCR at MDL and gyn cultures PCR as well at MDL.
I test postive IGG for myco P.
Im on levaquin now and see slight, very slight improvement.
gyn appt today wasnt so spectacular, more labs, that most likely will show nada!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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I think I have Babesia, and feel horrible every day with nasty fatigue and aches..Started Armor about 2 weeks ago and feel nothing, so I am feeling depressed ( which I am anyway) that it hasn't worked for me...
My question: I am taking Questan ( a toxin binder which I am sure you know about) that has to be tahen 4 hours away from any meds/ supp. So it is hard to fit in the Armor, so I have been taking it in the middle of the night when I get up to go to the bathroom. Do you think that is ok?
Do you see anything wrong with this?
Maybe I do need Synthroid? I have not been treated really for Babesia, so maybe that first you think for the Armor to work??? I would have never thought the 2 had anything to do with each other? Are you saying your Armor didn't work until you were treated for Babesia?
Thanks for your help! Laura
Posts: 232 | From MN | Registered: Jul 2007
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posted
are more people hypo as opposed to hyper thyroid?
can adrenal issues coincide or share similar symptoms as hyperthyroidism?
i don't have the exhaustion, but do share with cantgiveup's symptoms of not being able to gain weight, plus i have the heart palps, low blood pressure, and low temps.
i assume that i'd be hyper or depleted adrenals, but maybe it's babesiosis?
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
So the antibodies test is what you use to test for Hashimoto's? What are the indications you could have that?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Bugg
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posted
Hi all--
Cantgiveupyet: Unfortunately, I'm just not that familiar with CPP disorders and interstitial cystitis issues. As I'm sure you're aware, doctors don't yet have a "cure" for this. So, I'm assuming you're trying to find the best way to treat/ameliorate the symptoms. I'm assuming you've tried different antidepressants to no avail...
As for your endocrine issues, I do find it curious that your adrenals are high in the PM...As you're aware, your adrenals should be higher in the morning and lower in the evening....Are you having problems sleeping at night? Have you spoken with your doctor about taking something like Melatonin in the evening to try to lower your cortisol levels??
Laura Miller--I'm reluctant to comment on "when" you should take your thyroid med because, as you know, this is really a question for your doc. In general, I can say that CONSISTENCY is key. Also, if you have problems with your adrenals, then treating your thyroid may prove no benefit. The thyroid hormone controls the adrenals through the pituitary hormone. They work synergistically. Some who don't respond to thyroid treatment are suffering from adrenal fatigue which they need to address. Obviously, I don't know your situation but this is, perhaps, another avenue to explore.
Finally, yes, you're correct about my experience with babesia. In my particular case, I did not have luck treating my thyroid issues/responding to thyroid meds until after I treated for babesia. That said, though, during my first attempt at thyroid treatment I did not test/treat my adrenals either.
Additionally, earlier in my disease when I took the thyroid meds, I was sooooooo sick/disoriented that I could not make a cogent assessment of anything. This, again, is really something to discuss with your doc...Logic, however, would seem to dictate that treating a stressed thyroid/adrenals should at least ameliorate some of your symptoms which are endocrine-based....
NYJohn: Yes, generally speaking, most people suffer from hypothyroidism versus hyperthyroidism. However, don't forget though, that people with thyroid issues, can, on occasion fluctuate between the two as the thyroid gland/adrenals "sputter into action" to overcompensate.
If you think your endocrine system is an issue, I would encourage you to have your thyroid and adrenals tested (yes, they work synergystically)...I, of course, can't tell through an e-mail whether you have these issues..I can say, though, that the medical literature I've studied states that you can have weight loss and heart palps with hypothyroidism (generally, these are more commonly associated with hyperthyroidism)...
Also, don't forget that thyroid issues can cause magnesium depletion which can impact the heart (cause arrythmia)...You might want to have your magnesium levels checked as well..Your doctor must order a special bloodtest for this to look intracellularly at your tissue concentration....
Lymetoo: Yes, there is a bloodtest in which your antibodies can be tested to see if you have Hashimoto's. With Hashimoto's, the antibodies are attacking the protein in the thyroid gland. Additionally, your doc can perform a physical examination and an ultrasound to see if you have a goiter (large nodule) located in the area where your thyroid is (below the Adam's apple) area...(you don't have to have the goiter to have Hashimoto's)....
The symptoms of Hashimotos are very similar to those of hypothyroidism. Keep in mind, though, that some people with Hashimotos as revealed through testing actually exhibit no clinical manifestations. People with Hashimoto's will often have cyclic periods where they fluctuate between hyothyroidism and hyperthyroidism. If you're going to have these tests run, I would suggest examining the adrenals as well.
Guys--I hope this addresses some of your questions....Remember, I don't want to steer anyone in the wrong direction...just trying to put some ideas out there that you want to discuss with your doctor and explore...Just want you guys to feel good again and get off this board!!!
Take Care!
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Peacesoul
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Thi is very true and the rates in Canada differ than in the US
My level is 3.50 and in the US I would be treated but in canada he level has to be over 5. 00
More proof that most dr's are clueless to proper health
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posted
Just curious would Hashimoto disease which I have effect the CD57 test ? Which mine is 48. Thanks Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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posted
I have Lyme and Babesia and have been treating both and have been dealing with some heavy depression. Been working on treating that, but then it dawned on me to ask my doc for a thyroid panel. It came back
TSH: 3.79 Free T4: 0.8 Free T3: 2.2 no antibodies
So we're starting slow on levothyroxine 25 mcg. and T3 5 mcg baby doses because I tend to react to everything.
So far ok, and looking forward to bumping it up and see what happens. I'm hopeful that it will help with some of my fatigue and depression issues.
Now that I look back, I can see how this has probably been a problem for awhile, there's just so many things to think about and try and treat!!!!
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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Bugg
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Member # 8095
posted
Peacesoul--I wish you could get some treatment for your thyroid issues through a U.S. phyisician...I know there are some LLMDs in the New York area who work with Canadian patients...
Teresa--"an increase of NK activity is associated with exacerbation of autoimmune thyroid disease both in Hashimoto's thyroiditis and in Graves' disease and suggest that NK cells might have an important role for the control of disease activity in autoimmune thyroid disease."...from the Journal of Immunology....
Desertlily--Sure hope you find relief soon...sounds like you've got a good game plan...Yes, I realize now that my "never-ending herxes" were acutally most likely die-off exacerbated by a whacky endocrine system...
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
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posted
To those exploring endocrine issues: Please, please, please don't forget to examine your adrenals....Some hypothyroid patients may actually make their adrenal fatigue worse by just treating their thyroid (you need to look at both; some doctors are now saying you need to treat/examine your adrenal issues before starting thyroid treatment):....
For optimum results, please look at both...
SIGNS OF ADRENAL FATIGUE:
1) Do you have a hard time falling asleep at night? 2) Do you wake up frequently during the night? 3) Do you have a hard time waking up in the morning early, or feeling refreshed? 4) Do bright lights bother you more than they should? 5) Do you startle easily due to noise? 6) When standing from sitting or from lying down, do you feel lightheaded or dizzy? 7) Do you take things too seriously, and are easily defensive? 8) Do you have difficulty "recovering" (are really sore)from exertion/exercise?
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Treatment of Hashimotos will involve a change in diet.
Hypothyroid symptoms with a normal TSH and negative antibody tests is an iodine, L-Tyrosine, or selenium deficiency or a combination of any of those. Normal TSH is .3 to 2.5 AND the absence of Hypo symptoms.
Other halogens (bromide, fluoride, chloride) can disrupt iodine metabolism and therefore thyroid function.
White flour has bromine in it.
Prozac has 3 fluorine atoms, I'll bet that is why people gain weight on it, their serotonin levels improve but their iodine/thyroid balance is disrupted.
vitamin D is intimately related to thyroid & adrenal function.
Tyrosine, the amino acid that thyroid hormone is made from is the same amino acid that adrenaline is made from.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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bettyg
Unregistered
posted
bugg,
wow, i've got adrenal problems galore; will add this to my list to see pcp this month!
thx for additional leads! ****************************
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Bugg
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posted
BettyG--
Make sure you do your own research on the proper testing of adrenals before you see your PCP so she/he doesn't give you a worthless test. It's ALL UP FOR DEBATE but most integrative physicians will say that saliva tests are best or secondarily, 24-hour urine tests....with bloodtests being in third...Again, though, you should do your own research and find out what you feel comfortable with...
If you're going for this testing, I would ask for my adrenals tested; thyroid tested (tsh, free t3, and antibodies--Quest is a pretty good lab for this and this is bloodwork); and hormones (this is a bloodtest)..
Good luck...
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