I swear I have thyroid problems, but my TSH keeps coming back NORMAL. I think my dr also tested the T4 or something like that.. and was also normal. I have two friends that have thyroid problems and my symptoms are a lot like theirs, however they've had POS tests.
Is it possible to have problems with normal tests? My GP won't refer me to an ENDO cause of normal TSH labs.
Any suggestions?
Posted by coltman (Member # 21272) on :
Thyroid labs can show abnormal things but you have to know how to read them - most Dr's and endos dont have a clue . At the very minimum t3, t4, tsh and Reverse t3 are done.
Imho one of best indicators for thyroid issues is body temperature. If its lower than normal (98.6) its a sure sign of deregulated system .
Posted by Pinelady (Member # 18524) on :
Well said coltman. It is a malabsorbtion issue I
believe to be causeing normal levels with abnormal
symptoms. Right now my daughter hair is falling out
by the hands full, but I suspect she will have
normal levels and is being caused by malabsorbtion
from the cell damages from Lyme. I am getting it
checked and will let you know.
Posted by kareamber (Member # 20110) on :
I'm feeling horrible today and my temp is 96.8 and have many of symptoms. My mom is hyperthyroid too...
Posted by sixgoofykids (Member # 11141) on :
If your temp is that low, you have thyroid problems according to Dr. Broda Barnes. My own doctor monitors my thyroid by my temp not by blood tests.
My blood tests always came out in the "normal" range, but my LLMD ran the whole panel. It was all "normal" but it was all at the low end of normal so he tried some thyroid meds at low doses on me to see if it helped me to feel better and it did. It also brought my basal temperatures up to normal range, which is higher than 97.8 first thing in the morning.
Do you use iodized salt? If not, you might want a source of iodine, your thyroid needs it. Also, salt is good for the adrenals.
Posted by massman (Member # 18116) on :
Good points above. TSH means squat.
Yet many docs go by it and use it. TSH is a hormone from the pituitary, NOT from the thyroid.
So the real question is what does the thyroid do AFTER it gets the signal from the thyroid ? That is why the other tests suggested by colt are needed + better.
But an endo will get insulted if you ask them to test differently than they normally do.
Posted by granniela (Member # 17134) on :
Kareamber,
My LLMD didn't listen to hypothyroid questions from me until a gyn who is hypothyroid saw me, noted low body temp. with other symptoms and put me on porcine thyroid in spite of normal blood tests.
I asked her how to find a doc like her in another state for a family member and she gave me this site:
Be choosy as the info. shared there is opinion from others who are hypothyroid.
Another tid bit: just like with the LLMD, I have to see the gyn out of pocket because she does not participate in insurance plans since it is not the standard medical practice to prescribe when the tests are normal.
grannie
Posted by Lymeorsomething (Member # 16359) on :
Yeah, if the RT3 spikes on you for prolonged periods it will compete for receptor sites and make you feel like hell.
Wilson believed in part that illness could trigger some kind of genetic safety valve so-to-speak to throw one into a low metabolic state...especially those ethnicities that were exposed to famine in past generations.
So a T3 only protocol may reboot your body and get you running at full speed again.
Posted by Clint31 (Member # 16420) on :
I have VERY BAD hypothyroid problems. It is the only thing causing me problems anymore. It was fine in the summer, now I have the return of many bad symptoms that made me so sick or made me feel so sick when I 'thought' lyme was at its worst.
hot flashes chills/cold sensitivity dizziness brain fog
all back now even on my medication. Not sure what to do or who to see about it.
Lyme doesnt even really cause me problems anymore its all thyroid. I take seaweed and fish oil, tons of kelp, eat real well, avoid the foods I should; and nothing seems to help me feel normal. My thyroid is wrecked. Exercise helps but I still suffer several days a week badly.
Posted by Clint31 (Member # 16420) on :
I also take 15mg of armour thyroid each morning
Posted by Lymeorsomething (Member # 16359) on :
Clint 15 mgs doesn't sound like much...have you had bloodwork recently? Maybe you need more.
Posted by seekhelp (Member # 15067) on :
I was going to say 15 mg is a TEENY TEENY dose Clint. It's nothing. That's not even the lowest recommended dose! I'm sorry you're feeling bad. I hope things turn around agin.
Posted by Clint31 (Member # 16420) on :
my temp is ALWAYS 95 or 96 degrees
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Lymeorsomething: Clint 15 mgs doesn't sound like much...have you had bloodwork recently? Maybe you need more.
Just got it done this past Saturday, hoping it shows something and doesn't test false normal like you guys!!! I think I might need more, been told 15mg is nothing.
Also armour works for me, but I had to try naturethroid and it didn't work at all even though its supposed to be the same!!
Posted by seekhelp (Member # 15067) on :
Mine too. Usually 96 deg on a digital thermometer. All my thyroid labs are perfect though.
Posted by Lymeorsomething (Member # 16359) on :
Consider T3 only therapy...if you can find an MD to play along...not as easy as it sounds...
Clint, if the Armour works for you just bump it up...maybe that will take care of things.
Best.
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by Lymeorsomething: Consider T3 only therapy...if you can find an MD to play along...not as easy as it sounds...
Clint, if the Armour works for you just bump it up...maybe that will take care of things.
Best.
Thing is, Armour is on backorder, there is a shortage! I am freaking out! No clue when they'll start making it again regularly or if they will.... bad bad news for me I had no idea a thyroid (hypo) could screw someone up this bad but it can ruin your life
Posted by Lymeorsomething (Member # 16359) on :
Well, Clint, if you haven't already, you could try a Synthroid/Cytomel combo. It works for some and is generally always available.
I use this combo but am trying to get myself on a T3 only protocol sometime soon.
Posted by Clint31 (Member # 16420) on :
I heard that synthroid is awful and doesn't work. I'm afraid that it wont work for me. A lot of people say synthroid let all their symptoms come back and gave them cancer and stuff. read here:
people saying that armour must be made bc of the reasons I stated
Posted by Lymeorsomething (Member # 16359) on :
Synthroid works fine for some especially when paired with Cytomel (T3) at an optimal ratio.
Anyone can relate cancer to anything...the drug's been around a long time though.
The best way to find out if it's useful or not is to give it a try.
Plus I've heard the new formulation of Armour isn't working out too well for some people.
Good luck. Let us know how things go.
Posted by lymie_in_md (Member # 14197) on :
I think a lot of hypothyroid issues go back to eastern medicine of a cold body. And to supply your body with herbs and supplements that increase body heat. Also lots of detoxification, but I also believe a warmer body detoxs better. How many folks feel better in the hottest part of summer versus the coldest part of winter?
It was mentioned about malabsorption causing her daughters hair to fall out. Although, her tsh is normal. Whether normal tsh or not, malabsorption may be found to play a role in both nutrient loss and tsh levels in some way.
Including specific herbs while also exercising as much as you can stand might all increase overall body heat. Low sugar higher fat diets might help metabolism.
I'm guessing a lower basal body temperature contributes to malabsorption. And malabsorption contributes to lower body heat.
I started a while ago to increase body temperature about 9 months ago when my TSH was 72. After month my test was under 60 for tsh, another month it was 45, I fired my endo and stopped testing. My waking body temperature was about 96, is now about 98. I chose for myself, not to supplement t3 or t4. I found from my tests the t3 free and t4 free were close or in the normal ranges. I have very few symptoms now, but I've done lots of things to get where I am. So, I'm not advocating using the same path I did.
Posted by sixgoofykids (Member # 11141) on :
Clint, if your body temperatures are that low, you are undertreated, IMO. Do you use salt? Salt is good for the adrenal glands and helped me get my temperature up.
I just switched from Synthroid/Cytomel to Nature throid ..... I started the NT at a half grain in addition to the others. Then I cut out the 50 mcg Synthroid and went up to a whole grain of NT (yesterday). I still take the Cytomel ... it's only 5 mcg, so we'll cut that out once I adjust to the new source of thyroid.
My doctor is going to monitor my dosage by basal temperature.
Oh, and listen to Bob (as he said, you can still supplement thyroid, but maybe try his other ideas), I took a lot of his advice the past year on other issues and it's helped me get to full-remission .... cured??
Bob, who won? You or me? I've had no symptoms since August.
Clint, Under Our Skin is going to be in Yellow Springs, did you see that? I'll be there, I'd love to meet you!
Posted by merrygirl (Member # 12041) on :
My thyroid was low normal, but doc put me on cytomel. feeling better on it.
melissa
Posted by Clint31 (Member # 16420) on :
Wouldnt you know it, results back to the doctor and despite all my horrible hypo symptoms I listed; results are NORMAL! I dont know what to do. I know its my thyroid causing this stuff.
Posted by sixgoofykids (Member # 11141) on :
Ask him for your test results, Clint. You need to see a copy. You might be barely in range, that's how it was for me. With further testing, all my numbers were barely in range, so we started treating.
Posted by Pinelady (Member # 18524) on :
Thyroid is like a lot of things. It has to be ramped up or major system shock can ensue.
Synthroid, Cytomel and Armour. If you give a maintainence dose to a severe hypo you are going to
cause shock. It took my husband 6 mths to get to normal level with major pericardial effusion. So
take it slow. Don't try to fix it all at once.
Posted by lymie_in_md (Member # 14197) on :
You won six, for me its been since early october. It was quite a race though.
I made my anouncement at support group meeting in my area.
Clint there are lots of hormone dysregulations which can be going on in the body. It could be your liver isn't function to par, there could be problems with fat metabolism. I think some of the areas Dr. K. in washington covers, like KPU (deficiencies in zinc and b6), vitamin K (to increase blood flow), amino acid deficiencies. I orchestrated many of these on my own, including targeting biofilm in the gut. Using LED technology to increase ATP. Supplementing with various NO components such as cirtrulline, ornithine, arginine. Supplementing with whey in the morning.
Signs you are well, you don't shiver in the afternoon. Tinnitus goes away. Pains like tennis elbow are gone. Stiffness in calves have gone away. Complete clarity in thought. Don't miss the headaches. No longer have carpal tunnel like feelings. Tingling in the feet are gone. Always cold is gone. Sometimes having too much energy. My workouts are aerobic and I do them for 2 hours a day. Heavy lifting and running, calisthenics, and stretching. My recovery is about an hour after exercising. I could do the routine all over again. Yes you can get well.
Posted by seekhelp (Member # 15067) on :
Bob, you make me jealous with this line:
"Signs you are well, you don't shiver in the afternoon. Tinnitus goes away. Pains like tennis elbow are gone. Stiffness in calves have gone away. Complete clarity in thought. Don't miss the headaches. No longer have carpal tunnel like feelings. Tingling in the feet are gone. Always cold is gone. Sometimes having too much energy. My workouts are aerobic and I do them for 2 hours a day. Heavy lifting and running, calisthenics, and stretching. My recovery is about an hour after exercising. I could do the routine all over again. Yes you can get well."
One can dream right?
Posted by coltman (Member # 21272) on :
I am going to try Wilson's prot. My T3 is lowish and my Reverse T3 is above range (high).- RT3 excess is what Wilson's addresses as far as I understood it
Posted by lymie_in_md (Member # 14197) on :
Coltman -- here are some thoughts to consider hope they help.
I found the following to be true. Its a post from the following link:
On the conversion tests... RT3 can be associated with a conversion issue - but it is only one sided. A reverse T3 is the test to determine if the T4 conversion is storing the active hormone and really turning it backwards into RT3 - that is why the idea of removing the patient off T4 meds and putting them on a T3 ONLY med is given. To eliminate the reverse T3 hormone and release it to active T3 - with only a T3 med used.
On the conversion issues - that is pretty simple. An educated look at the Free testing can determine if you have a conversion issue. a high FT4 reading and a low T3 reading on any thyroid meds - could determine a conversion issue. That is simple math. BUT a range of testing on frees is look at and if you fall within the normal limits then usually a doctor will only look at one test or the other to determine the increase or decrease of meds to balance it out - of course with the TSH being their guide more so than the others.
You have a high enzyme count when it comes to the bulirubin results. It is enzymes of the liver that is creating that. Can Hashimoto be associated with that? Most definately.
AMA tests and Alkaline Phosphate, AST and ALT determine different issues of the liver and what is faulty. Can it peg out thyroid levels - no I don't think so.
But you have to always keep in mind that the liver is our filteration of us as living beings. What we take in - must be purified for our bodies to live well. Meds in any form - if swollowed - must be filtered through our livers and this will caused disruption. Keeping the body cleansed is the best and BTW - a good lemon and water drink is wonderful to keep that organ clean.
Now - with Hashimoto hypothyroid - we swing into rages of hyper and hypo. Where are those hormones going? You guess it - the liver. the liver will fall responsibile to filter out the bad hormones- access - so where to those excess hormones store. Liver.
Slow production (hypo) causes the liver to become starved too. It knows it must filter the bad - but it won't work properly when nothing is feeding its way. What will it do? It (as weight is for hypo's) stores the bad stuff inside and becomes ill itself - because the body is not moving in the right gears to keep everything well.
Hense - high tests
Flush your livers - it's our life filtering machine.
I think it is why Dr. Max Gerson had his patients do so many coffee enemas. These enemas actually do a good job of cleaning out the liver. The problem for lymies, its a great place to find lyme situated. If you read some of the detail behind his patients outcomes they are 3 times longer then chemo. So he had the right idea to health, but not to the AMA, which is not about health but profit.
Posted by kareamber (Member # 20110) on :
You are all confusing me with this lingo! So if I feel I really have thyroid problems with normal TSH how do I get a dr to treat me? Will it hurt me to treat if my Thyroid really is normal?
Posted by lymie_in_md (Member # 14197) on :
In the medical playbook the insurance companies will only allow most doctors to treat based on a lab result.
Instead, we find most of our solutions come from our own research. Ask a doctor if they had ever heard of Max Gerson. Ask them what they think of his approach to patients.
So to advocate or help ourselves is to become informed. And to believe in our own innate ability to become well.
If your liver is perfectly clean and functioning perfectly would there be any t3 conversion issues. Lets look at your situation, ask the doctor could a congested liver cause what would appear t3 or thyroid issues (depends on whether its a duck or a doc). Fire the duck, hire the doc. A great many people here have to do go through a great many duckters to get to a doctor.
Sorry, I luv lingo -- isn't that something you try to get under a stick? Posted by nefferdun (Member # 20157) on :
There are doctors out there that treat based upon symptoms rather than lab tests, just like with lyme. Ask your pharmacist and friends and just make calls around till you find one. Usually the doctors the prescribe bio-identical hormones are more open minded.
TSH comes from the pituitary gland and tells the thyroid there is not enough T4 in the blood so it needs to produce more. T4 must be converted to T3, what the cells can use, so if your doctor is not testing the conversion to T3 and those levels, you can still be hypothyroid.
But hot flashes are not a sign of being hypothyroid! It is an indication of high thyroid or an infection like bartonealla or babesia. And lyme disease lowers you body temperature.
Check out symptoms on the net so you can tell the doctor yourself why you feel hypothyroid. Dry skin, brittle hair and fingernails, poor memory, gaining weight, low energy, outer third of the eyebrow falling out, indentations of teeth on tongue in morning (swelling tongue), swelling in face and elsewhere, depression. . . . It does not hurt you at all to try thyroid medication to see if you feel better. Your thyroid will stop producing whatever amount you are taking so it is hard to overdose unless you just take a huge amount to start with. My daughter sees a doctor that does not even test. He just gives her the amount she feels she needs that is within a normal range. It has done wonders for her. I suffered all my life with thyroid related problems so I hope you can find help.
Posted by Lymeorsomething (Member # 16359) on :
quote:Originally posted by coltman: I am going to try Wilson's prot. My T3 is lowish and my Reverse T3 is above range (high).- RT3 excess is what Wilson's addresses as far as I understood it
Same here...and certainly an intriguing experiment to undertake. The key will be running it long enough to see results. It may take some patience.
It's worth a shot as thyroid symptoms are wide-ranging and tend to overlap a lot of the lyme symptoms. If these two are in play together, then the hammer is really coming down hard...
Posted by brooke (Member # 16606) on :
If you're taking Armour then you should read this. Sorry if this is old info.
My doc is having trouble getting Naturethroid AND Armour. How do we remedy this? I dont want to have to pay for compounding...sigh.
Also....I just found out I have low ferritin (12). So I want to start supplementing that. Anyone know a good brand/source of this, nonconstipating, that will help get the ferritin up?
So tired of having to do this detective work on my own...youd think some of these IN NETWORK docs would have a clue, but nope...
Posted by brooke (Member # 16606) on :
Get some of Erfa's Thyroid from Canada. It's like $19 (plus $7 shipping) for 100 60 mg pills and it's basically the same thing as Armour. All your doctor has to do is call/fax in the prescription and you'll get it in 1-2 weeks.
As for the ferritin...my level was 7 and I took 3 of the Slo-Fe per day for about 2 months and it went up 50 points. I didn't have any side effects but it is a little pricey. I think it's around $14 for 60 pills.
If you want the name of the Canadian pharmacy I used just let me know.
brooke
Posted by Sammi (Member # 110) on :
kareamber, I have not yet read all the replies so I apologize if I repeat information already posted.
I had thyroid problems for years and kept being told my results were normal and nothing was wrong.
Finally when one doctor ran the thyroid antibody tests (years later) one of the antibodies was over 1000 and normal is 0-34! This indicates Hashimoto's Thyroiditis which is an auto-immune thyroid disorder. Some people who have this have normal test results but treatment is still warrranted.
Too many doctors rely soley on TSH results. From what I understand, the Free T3 and Free T4 (not T3 and T4) tests are more important indicators of thyroid function. Many people who have symptoms may be in the low normal range. I fell into this category. There is a lot of room to work and still be in the normal ranges.
I finally found an excellent thyroid doctor (a regular GP) by calling a compounding pharmacy in my area and asking if they could recommend someone who considers the Free T results and symptoms. This doctor has helped me more in one year than all others combined have in several years.
Finding a good doctor can make all the difference. You may find some helpful information at http://www.stopthethyroidmadness.com/ Posted by canefan17 (Member # 22149) on :
I read this entire thread and there is no mention of supporting your adrenal glands?
My first line of duty was getting my adrenals back up and functioning. That has helped TREMENDOUSLY.
Now I am joining this thyroid game and it becomes a bit confusing.
I KNOW I'm hypothyroid. I have all the symptoms.
I just don't know where to start. I love treating things the natural way. natural supplements, diet, "salt", etc.
Anybody got a good place to start?
Posted by Pinelady (Member # 18524) on :
I think Blood Sugar may be a good place to start.
If you know how your body reacts to BS altering
foods you may be able to access how your thyroid
reacts also. I know for me I can't do certain foods
as they lower my BS. Just a thought.
Posted by canefan17 (Member # 22149) on :
So my body temp was 96.9 this morning.
I'm gonna start throwing some iodized salt into my foods : )
Guess that's a start.
Posted by Sammi (Member # 110) on :
Another site with good thyroid information is http://thyroid.about.com/ Posted by Keebler (Member # 12673) on :
- Labs cannot possibly tell us everything about thyroid or adrenals. Most people with lyme have challenges in all aspects of endocrine dysfunction and most endocrinologists have no clue about all this. I'm not sure the tests even exist to tell us all we'd like to see on a page in black and white.
Also be cautious with any "challenge" tests if hormones or steroids of any kind are used.
A good LLMD is really the best to answer these questions and any endocrinologist seen should be a referral from a LLMD so that the specialist is sure to be lyme literate. Lyme patients cannot be treated like patients without lyme. No much just does not work the same once lyme is involved.
So much information comes from how we feel and our patterns.
I also know we deserve to feel better but our expectations can derail us. I should feel much better but I don't. And I probably won't for a while. Treating infection is always number but support is required to do that. Rest is vital as well.
And adrenal dysfunction affects thyroid, too. If the adrenals get better, so will the thyroid. For details:
This doctor is revolutionising treatment for the condition.
He says that the immune system mistakes the gluten molcule for the thyroid molecule and turns on the thyroid instead, and if one takes gluten, and casein out of the diet, the attack will stop.
I started the diet a few weeks ago (I also have Lyme and mercury poisoning) and there is a noticeable difference but only since I went very strict.
My energy levels have improved a lot but no sign of increased temperature as yet.
Posted by Clint31 (Member # 16420) on :
I just cant cure this. I ordered erfa thyroid from canada in hopes that it cures me like the old armour did.
I feel like I'm dying. I'm depressed. I'm cold. I just cant win or beat this part of the disease.
Posted by canefan17 (Member # 22149) on :
Clint
Adrenal stim + adrenal calm And add an adrenal support supplement Vit C + b5 + cordyceps
You need to recover your adrenal glands first and foremost.
Posted by Pinelady (Member # 18524) on :
I have this theory. Just thinking out load here so take it with a grain of salt and a shot of OJ.
But what if we are looking in the wrong place for the low body temp. thing. Since no one can define it for us. Skin is the body's largest organ.
What if it is directly caused by the skin being invaded by borrelia.
Meaning skin the the most common site to find them on autopsy, so they must like the components there. So cells have to be altered.
I know burn patient freeze to death in loss of skin also.
What if it was discovered that it is this that is causing our lowered body temp. by the loss of cellular function of the skin not enabling our bodies to be able to retain heat?
I know don't hold your breath.
But it seems like a easy theory to test. Simply don a thermal wet suit and see if the temp goes up. LOL
[ 12-27-2009, 10:45 PM: Message edited by: Pinelady ]
Posted by Clint31 (Member # 16420) on :
My body temp is always like 96 now and that's my worst symptom. I believe it's hypothyroidism and not Lyme
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Usually 96 deg on a digital thermometer. All my thyroid labs are perfect though.
![[lol]](graemlins/lol.gif)