Karma

Thyroid symptoms -- hypothyroid, Hashimoto's

174 posts in this topic

I promised on another thread to share some information about how the TSH reference range is defined. I found this article on About.com that explains the situation. http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

 

In a nutshell, the TSH range is arrived at by taking the TSH lab values of a population of people assumed to be healthy. Unfortunately, because of how they currently diagnose hypothyroidism, this population includes people who are hypothyroid, but who have not been diagnosed. This then skews the normal ranges and patients who are truly suffering are told there is nothing wrong with them.

 

As the article points out, the new range would allow many more people to be diagnosed and treated, but it hasn't been universally adopted. I argue that a single data point is not adequate for a diagnosis ... as this article indicates, one should test free T3, free T4 and antibodies in addition to an observation of the patient's clinical symptoms in order to determine a diagnosis.

 

Karma

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Here is a good article by a physician with citations http://hormonerestoration.com/Thyroid.html The article talks about the fallibility of "Reference Range Endocrinology." Of note, is what this physician has to say about bone loss caused by thyroid replacement therapy.

 

My bone specialist thinks that my thyroid treatment is contributing to my bone loss, but as this article points out, I was already losing bone density (as I am post menopausal and my BHRT is not optimized) ... T3 just speeds up metabolic activity and stimulates bone cells.

 

Fortunately, my bone specialist understands that I am not changing my thyroid treatment ... I am finally optimized on T3 only therapy. I suffer no aches and pains, no fatigue, no sleep disruption, no dry skin, no excessive hair loss, and no depression. You can refer to my Karma thread for more information about what I'm doing to reverse my bone loss ... and it doesn't involve bisphosphonates or other drugs.

 

Karma

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Karma,

Great resource and good to know of a knowledgeable endocrinologist in PA.

THANKS!

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Looking through old labwork. My TSH was 47.62 uIU/mL when originally diagnosed w/Hashimoto's in 1996. I know that's high, but wondered if it's offthecharts high?

 

My T3 got above normal range in 2005 - not remarkable

 

The value that was never addressed is elevated Creating phosphokinase (CPK) in 1995

CPK = 356 IU/L [26-189]

This was in bunch of labwork ordered by my pdoc. Results never discussed. It was at a time of severe pain. Husband just asked if I had a heart attack. GRRR}}}

 

Also

FANA PATTERN 1:160 HOMOGENOUS [<1:40 TITRE]

(In same box as ESR - sed rate?)

Also never mentioned.

 

Why do docs get labs and never review them??? I dont think they know what they mean. Same w/Xrays. They hold them up to the light as if they know what they're looking at. BaaaHaaaa!

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Looking through old labwork. My TSH was 47.62 uIU/mL when originally diagnosed w/Hashimoto's in 1996. I know that's high, but wondered if it's offthecharts high?

 

My T3 got above normal range in 2005 - not remarkable

 

Wow Barb, that appears to be a high TSH, but it would depend on the normal ranges that are associated with it. If it is against the standard normal range we see in the US then it is off-the-charts high.

 

T3 on its own doesn't tell us much, but Free T3 can give us an indication of health. My FT3 runs about 6.2 which is high for the normal range in my area, but 6.2 used to be the top of the range for FT3. T3 includes both the bound hormone as well as the free hormone so that isn't really helpful. Free T3 tells us what is available to the cell receptors.

 

Sed rate is an indicator of inflammation in the body. I think this FANA PATTERN 1:160 HOMOGENOUS has to do with testing for Lupus - http://arthritis.about.com/od/diagnostic/a/ana.htm

 

I'm not familiar with the significance of the other labs.

 

 

Karma

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Thanks, Karma.

Yes, the RR for TSH was 0.35 - 5.50. Just noticed it says "TSH 30 minutes" so this may have been a TRH challenge. I believe this was the first thyroid was tested. Does a TRH challenge yield a higher or different TSH than standard TSH testing? Just noticed my weight was 136 at that time. I'm at about 95 now without trying to lose.

 

A later test by OB/GYN shows Thyroid peroxidase antibodies at >1000 High (on RR <35). Also never addressed although I was on Synthroid at time. This OB/GYN had great reputation, but treated me dismissively.

 

The CPK is generally muscle damage, either heart or smooth muscle. I have no idea why this was never even mentioned to me. It was out of range enough that it triggered an immediate confirmatory test.

 

I don't know if looking back at these is of any value or I just want to find someone to be angry at. :o

Thanks again, Karma.

HUGS!

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TRH is thyrotropin releasing hormone - and is used to stimulate TSH - usually there is a baseline TSH test and an injection of TRH is given to stimulate the pituitary to release TSH (because TSH is a pituitary hormone). You would expect the second TSH to be taken within 20-30 minutes. It isn't commonly used any more and I don't know too much about it.

 

Thyroid peroxidase antibodies at >1000 High (on RR <35) is a clear indication of Hashimoto's thyroiditis. If you want to be angry at something - be angry at the whole western allopathic medical system which is driven by profits and prevention of malpractice lawsuits which inhibits innovative doctors from treating their patients outside of the "standard of care." As long as the doc can say he used the "standard of care" ... which usually involves a pill ... then the state medical board will back them. In a lot of states the state medical boards are trying to shut down integrative medicine - they don't want us to use diet to heal ourselves.

 

Oops, let me just step down off of that soap box :rolleyes: .

 

Karma

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Oh no... please go on, Karma. I just had blowup with DH about psychometric testing being used to determine if someone will respond to pain treatment. He said if it's "part of their personality disorder" it won't respond to pain treatment...my blood is boiling. I cant think straight.

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If you want to be angry at something - be angry at the whole western allopathic medical system which is driven by profits and prevention of malpractice lawsuits which inhibits innovative doctors from treating their patients outside of the "standard of care." As long as the doc can say he used the "standard of care" ... which usually involves a pill ... then the state medical board will back them. In a lot of states the state medical boards are trying to shut down integrative medicine - they don't want us to use diet to heal ourselves.

 

Oops, let me just step down off of that soap box :rolleyes: .

 

Karma

 

Co-sign big time!

 

Alex

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Just found this interesting article about how to heal your thyroid, from Natural News.

 

Alto, maybe you could check it out as I don't want to post incorrect information. Usually Natural News is quite ethical.

 

Thanks Debbie

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Debbie, I think the link is missing! (I forget to add links, and attachments to emails, almost without fail lol.)

 

Or am I just not seeing it?

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I'd like to see that article :)

 

Has anyone tried Coconut Oil? I don't have thyroid issues but have been taking it daily for other reasons. My daughter though has hypothyroid and I'm trying to get her to take it so I can see if it helps. She just recently had to stop taking her thyroid medicine because it was causing anxiety.

 

Coconut Oil for Thyroid

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Debbie, we need a link for that article. I have no idea if it makes sense.

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I don't know how reliable this source is. The articles are contributed by people who might be promoting their own "natural healing" programs.

 

Karma or someone else more knowledgeable about thyroid problems would be better able to evaluate that particular article.

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Ok thanks alto

X

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In general the information in this article is valid ... John C. Lowe is a pioneer in the treatment of thyroid and I have found his guidance to be helpful. Unfortunately Dr. Lowe passed away this year and we (the thyroid group that I am a member of) are heartbroken that we have lost this pioneer in metabolic research.

 

What does concern me is the idea of increasing iodine. In a situation where the individual is "just" hypothyroid iodine could be helpful. However, if an individual has Hashimoto's thyroiditis, which is an autoimmune condition iodine can be harmful. With Hashimoto's the thyroid sputters and can go from being hypo (low) to hyper (high).

 

Hashimoto's is diagnosed by the presence of thyroid antibodies. Reducing inflammation in the body is always a good idea. Avoiding processed foods and unnecessary pharmaceuticals is sound advice. Eating organic whole foods is also good advice and since there is a correlation between Celiac Disease and Hashimoto's avoiding grains ... specifically wheat, rye and barley ... can be good advice.

 

There is nothing here that I see that is "wrong", but taking this steps may not be enough to resolve a thyroid condition. I looked at the Body Ecology links and their advice is ok, except that I would avoid the Dong Quai.

 

I hope something here is helpful and apologize for not responding sooner.

 

Karma

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I had to switch to T3 only because my reverse T3 got so high that I was in a perpetual state of hypothyroidism.

 

This is so confusing to me. I have one doctor who thinks I need T3 because my T3 was too low. A second doctor thinks I will need hormone replacement but not T3 because the low T3 is a false low caused by faulty conversision. The conversion problem is due to the elevated RT3 which is primarly caused by inflamattion.

 

The second doctor says taking T3 will alleviate my symptoms but a preferable strategy is to reduce the RT3 using an immune modulating protocol. After RT3 is lowered I will be able to convert T4 more effectively.

 

Currently, my TSH/T4 have been fairly normal. TSH 1.6-3.2 usually in the 2's.

 

It's confusing to me that a treatment for high Rt3 is T3. Wilson's?

 

Alex

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Currently, my TSH/T4 have been fairly normal. TSH 1.6-3.2 usually in the 2's.

 

It's confusing to me that a treatment for high Rt3 is T3. Wilson's?

 

Alex

 

I admit that i'm thoroughly confused about rT3. Ive never had that measured nor have i seen it on a lab order.

 

RE: Wilson's Temperature Syndrome. I read another thread about it and it sounds a little sketchy. Is this a valid diagnosis?

 

While im being skeptical... the article posted says that the thyroid controls other glands, like the adrenals.. I think it's important to steer away from that cascade effect thinking and remember that the entire endocrine system is made up of feedback loops. Correct me if im wrong, but I don't *think* any one gland controls the others aside from the pituitary, master gland.

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I got interrupted, but I had a question for Karma.

 

Karma, is your Reverse T3 lowered now that you are on hormone therapy?

 

Thanks

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Currently, my TSH/T4 have been fairly normal. TSH 1.6-3.2 usually in the 2's.

 

It's confusing to me that a treatment for high Rt3 is T3. Wilson's?

 

Alex

 

I admit that i'm thoroughly confused about rT3. Ive never had that measured nor have i seen it on a lab order.

 

RE: Wilson's Temperature Syndrome. I read another thread about it and it sounds a little sketchy. Is this a valid diagnosis?

 

While im being skeptical... the article posted says that the thyroid controls other glands, like the adrenals.. I think it's important to steer away from that cascade effect thinking and remember that the entire endocrine system is made up of feedback loops. Correct me if im wrong, but I don't *think* any one gland controls the others aside from the pituitary, master gland.

 

I don't know about Wilson's protocol. It does seem he attributes A LOT of health problems to elevated rT3. But I really have no informed opinion.

 

The good thing about Hashimoto's is that there seem to be effective treatments such that it rarely has dramatic health consequences once it is treated. I think, anyway.

 

And, I don't think it's a valid diagosis according to the establishment, but Barb ... we all know by now how little that means...

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I remember what struck me about Wilson's... it sounds like there's significant overlap with adrenal insufficiency and it's concerning that T3 be given in absence of lab values and only on 3 temperature reads/day (per other thread). I DO feel that T3 makes more sense than T4 since it is the form of thyroid used by the body (doesnt have to be converted).

 

 

Also, just caught the warning about treating as HYPOthyroid if it is actually Hashimoto's..? I should know this, but I'm still confused about how Hashi is treated differently than hypothyroid. Is it because Hashi tends to go from hypo- to hyper-?

 

Again, please correct any wrong assumptions!

 

EDIT: My thyroid makes me cranky. :o

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I got interrupted, but I had a question for Karma.

 

Karma, is your Reverse T3 lowered now that you are on hormone therapy?

 

Thanks

 

Hi Alex

 

Sorry for delayed responses - I've been buried again this week ...

 

Yes ... my RT3 lowered significantly to basically nothing ... by taking T3 only to the suppression of TSH my body no longer produces its own T4 and therefore, there is nothing the body can convert to RT3. T3 only therapy over 12 weeks allowed the existing RT3 and T4 to decay and ultimately allowed my T3 receptors to free up and accept active T3.

 

The body converts T4 to active T3 and RT3. Low iron, adrenal issues, excessive dieting can cause the body to produce excess RT3 ... when that happens the RT3 which is a mirror image of active T3 attaches to the cell receptors and blocks active T3 from attaching to the cell receptors.

 

Not a medical professional ... just sharing what I've learned

 

Hashi's does swing from HYPER to HYPO ... when treating with natural desiccated thyroid to the suppression of TSH the body no longer produces significant thyroid and the patient no longer experiences swings form HYPER to HYPO.

 

I'll write more later ... cite some sources ... exhausted.

 

Karma

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Thanks Karma, That explains a lot.

 

Doc reran my labs because this last time things went way off baseline and I've been worse than ever so I expect some janky results. Frequently it's the rT3 that's been off for me, a couple times I've had a high/low TSH but never outside the labs range.

 

What I eat seems the most critical component. Since I've been out of the house (4 weeks now) I have been eating so irregular, I'm just getting worse.

 

I twice thought I found an apartment but am still here, the hotel.

 

Thanks for the info on the thyroid.

 

Alex

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A neighbor of mine has suffered with depression CFS and EBV for years.

 

Her idiot doctor put her on Effexor and abruptly took her off of it several times and tried every med under the sun. The doctor does not know about severe WD symptoms from Effexor.

So it seemed like nothing was working when it was actually WD.

 

Her Endocrinologist never bothered to look deeply into her thyroid issue.

 

She finally found a doctor who's wife has Hoshimotos.

 

Hoshimotos is an autoimmune disease. CFS is considered and autoimmune issue and Epstein-Barr Virus is as well.

 

Apparently one of the tests (deeper ones) was 99 and the normal number is 35. There are other tests and then a treatment plan will be implemented. Using meds and a holistic approach.

 

They discovered that she has (Barb this made me think of you) an adrenal issue which is autoimmune as well. This poor woman was being treated by a Psychiatrist who sent her for 11 ECT treatments and she was worse off. She was Baker acted for telling a psychiatrist that she wanted to end her life from the depression.

 

After all of these years she may finally be getting to the root of her depression which was further compromised by all of the autoimmune disorders. And like Barb, she she has little, if any adrenal function.

 

I believe she was properly diagnosed.

 

Many A/D's over the years, the biggest culprit being effexor which she is still on. she can't sleep without Ativan.

 

Barb you may not be alone....I will find out the name of the group she is seeing.

 

Very sad....

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There is something that can help, Low dose Naltrexone.

 

Myself I am using it with some good results. It's amazing what it does to people, really.

 

Read more here: http://www.lowdosenaltrexone.org/

 

Also cut caffeine, and up Magnesium, B vitamins, with Omega-3/Coconut oil, good diet etc

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LDN is potentially helpful to a lot of people. Charles Whitlock MD recommends it in some cases of withdrawal as well...

 

Just to let people know though...it MESSED me up good...total intense stimulation...AWFUL...

 

BUT...I have a close friend with MS and her life was transformed on it...

 

in general I'd say it's one of the safest and most truly therapeutic drugs out there...if it works for you and it's potentially very helpful for all sorts of auto-immune issues.

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I have been really curious about LDN for a while... in the desperate search for a cure, and because I hear it can help with CFS (which I have neverbeen diagnosed with but suspect I could be... had chronic mono in my early 20s), I have wondered if there is any chance it could help me.

 

That is very interesting that there is a doctor attempting using it for withdrawal. I am skeptical of a "cure-all" drug, but maybe it is like magnesium, which can help a bunch of issues.

 

I wish I could get it in my country. I would be willing to try it, as it seems it is fairly innocuous.

 

GiaK, did the bad effect it had on you last a long time?

 

Mixter, what did you first take the LDN for? Maybe we should have an LDN thread?

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I think it lasted several days, but I was in the worst hell of hells when I tried it too...and most people don't get as sick as I was even among us...so my sense is if one tries it very very carefully starting at the very lowest low dose it most likely wouldn't be a huge set back...but I've also not seen it used in our communities so that is really just a wild guess...

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I have just been to a naturopath who - next visit, after some hormonal tests come back - is planning to "treat the Hashimotos". I am a skeptic... But will see what she says.

 

\

B

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I'm very interested in LDN for autoimmunity, also. I'm an AI mess, including CNS vasculitis, and NOT tolerating even low dose hydrocortisone. The next step is to use chemo drugs to suppress immune system and I will not do that at this point. There is too much overlap with onset of withdrawal symptoms and CNS vasculitis (perceptual disturbances, mostly) that has been present for many years per MRI.

 

Bubbles, how is your Naturopath planning to treat Hashimoto's?

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Barbara, I didn't ask. It was a long appointment and we went overtime as it was. I figured we'd wait until we got the saliva hormone levels and see then what she suggested and discuss it then. Next appointment is in about a month, assuming results are in by then.

 

B

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Mixter,

 

Can you tell us more about your experience with LDN? What are you using it for?

 

Anyone, Any information, anecdotal or other, very much appreciated. I am awaiting approval to join the Yahoo group.

 

I'm intrigued because it works with endorphins and opiates. I never responded to serotonergics except with worsening mood over the years. I felt *normal* on opiates. I was on very low dose Suboxone (related to naltrexone) for a few years and stopped it in fall of 2011 when I ran out. It was about a month after that that protracted withdrawal really hit me. I can't imagine the low dose I was on was doing anything (1/2 tab 1-2x per week prn). But... I'm curious.

 

My MRI showed lesions in white matter but not with MS pattern.

 

A longshot, but worth a look.

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Yes, I want to know more, too. Let us know what you find out, Barb. My dad had vasculitis, but a different kin as yours,, both my sister and mom have thyroid disease, and my niece has ulcerative colitis. So autoimmune stuff is on my mind a lot.

 

I might make a trip to California to see someone who could help me, if I can manage it financially with no health insurance.

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One can have thyroid inflammation, which leads to the diagnosis of Hashimoto's, until you die, without enough thyroid disruption to warrant treatment with thyroid hormone.

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I've recently been diagnosed with Hashimoto's and then, by another physician, undiagnosed. Autoimmune issues recently became a big problem for me.

 

I agree with Alto in that testing for antibodies doesn't necessarily mean that a person needs hormone replacement. It is totally possible for immune system to dysregulate and then re-regulate. There is a point for that, when glands are unable to meet demand, but antibodies should appear well before that point arrives.

 

When I not too disoriented, I've spent time reading on various treatments and causative hypotheses. The leaky gut hypothesis is pretty popular among alt-health bloggers. But there seems to be two camps. The first, leaky gut allows food proteins to activate immune response and the second, leaky gut fosters chronic infection.

 

I have no expertise here, but I am glad I got a stool test back in May. Unfortunately, it was misinterpreted for months and my infection is actually difficult to treat. However, it is also rare. Most early stage patients would probably do well, IMO, to examine GI for evidence of viral/bacterial/fungal infection. Down the road, like in my case, it becomes more difficult.

 

For me, I feel uneasy about LDN and it's towards the last resort side of the curve. I don't see how it remedies any underlying, and I am personally trying to address the underlying as I am not so symptomatic that symptoms need immediate attention. Hopefully, I can treat my infection and see better what problems remain.

 

I've been reading an interesting blog lately, perfecthealthdiet.com ... Maybe confirmation bias, but I find the writers' views compatible with my own thoughts about, for instance, the GAPS diet. perfecthealthdiet.com tends to stress the infectious component of poor health, which probably has influenced my thinking. I also tend towards the infection explanation because I am suffering from an infection which affects me every moment.

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