What is the difference between Fibro/cfs/ and undiagnosed hashimotos?

[cheshire]

As a hashimotos survivor, or should I say one who has been poorly managed by the medical community and suffered needlessly for many years, I often see similarities between fibro?CFS and thyroid disfuction. When I was finally diagnosed with hashimotos, here were my symptoms:

Less stamina than others
Less energy than others
Long recovery period after any activity
Inability to hold children for very long
Arms feeling like dead weights after activity
Chronic Low Grade Depression
Suicidal Thoughts
Often feeling cold
Cold hands and feet
High cholesterol
Bizarre and Debilitating reaction to exercise
Hard stools
Constipation
No eyebrows or thinning outer eyebrows
Dry Hair
Hair Loss
Dry cracking skin
Nodding off easily
Requires naps in the afternoon
Inability to concentrate or read long periods of time
Forgetfulness
Foggy thinking
Inability to lose weight
Always gaining weight
NO sex drive
Moody periods
PMS
Excruciating pain during period
Swelling/edema/puffiness
Aching bones/muscles
Bumps on legs
Breakout on chest and arms
Hives
Exhaustion in every dimension–physical, mental, spiritual, emotional
Inability to work full-time
Inability to stand on feet for long periods
Complete lack of motivation
Slowing to a snail’s pace when walking up slight grade
Extremely crabby, irritable, intolerant of others
Handwriting nearly illegible
Internal itching of ears
Broken/peeling fingernails
Dry skin or snake skin
Major anxiety/worry
Ringing in ears
Inability to eat in the mornings
No hair growth, breaks faster than it grows
Joint pain
Carpal tunnel symptoms
No Appetite
Swollen legs that prevented walking
Blood Pressure problems
Dizziness from fluid on the inner ear
Low body temperature
Tightness in throat; sore throat
Swollen lymph glands
sore feet (plantar fascitis); painful soles of feet

Do you with fibro and CFS experience any of these symptoms?

Did you know that Fibro and CFS came about around 30 years ago, after the introduction of the TSH test. Prior to that, thyroid disfuction was diagnosed by symptoms, and sometimes high cholesterol, and the patients were treated with natural thyroid meds, not synthetic T4. Now doctors rarely listen to symptoms and rely only on the lousy, TSH test for diagnoses. i wonder how many of you have been very mismanaged by your doctors, as I was, and could have been spared by a proper diagnoses of hypothyroidism. How many of you looked at your Free T3, Free t4 and antibodies results yourself. after all the Free T4 and T3 should be at the top of range, but many doctors miss this and only look for it to be "in the range" no matter if that's right at the bottom.

Surely if my pituitary hadn't have worked so well, and my TSh didn't get so high, I might be never have been diagnosed. My doctors after all (all 7 of them) don't know how to read the other tests. And if I would have stayed on synthroid like they wanted I would now still have anxiety, aches and pains, chronic fatigue, no memory...

[LazyMoose]

This origional post makes some very good points. Such as the close time frame of diagnosing low thyroid by the means of the "gold standard TSH range" (which is faulty), and increased fibro and CFS diagnosis at the time.

Fibro has many different cronic symptoms for many different people. I was Dx'ed with it once, but felt this Dr was pretty quick to just put a lable on me. Years later I was Dx'ed with Hashimoto antibodies after my body had the symptoms for decades. Much better now. Without the internet ,T3 replacement hormone , and many different suppliments , I would still be miserable.

[chicagolandtam60501]

wishing I could try armour
wishing I could work
wishing I had some health insurance
wishing I never took the Premarin
     which thru my estrogen outta whack
     which then caused my hashimoto . CFS & Fibro & such
wishing I could have some kinda life
      insteada this existence

But Glad that someone....understands  

thx for that

[Soonerman]

You mentioned some TSH levels to be concerned with, and my results were lower than the value of 1.5 you stated.  My result was 1.21, well within the "normal" range.  However I also have low vitamin b-12, and you mentioned that as a test you should get done to see if you are hypo.  How does B-12 level relate to thyroid function?  Well I have alot of symptoms that lead my doctor to originally suspect abnormal thyroid function, and I also have family members that have thyroid problems; but the normal TSH led my doctor to other explanations/tests.  Is it still reasonable or likely that something is wrong with my thyroid and I need to test T3/T4 and thyroid antibodies?  What should the levels of these be, and if they are "normal" will that prove that my thyroid is ok?
Thanks

[Curls]

Thanks for all the info.  I've been hoping to get a chance to dig up my lab results and post them for your comment.  Haven't had a chance yet - but I hope you're still checking in once in a while when I do : ).  I wouldn't want to miss something that might help me.  Hope you are doing well!

[PlateletGal]

Most patients with CFS usually have 2 or 3 of the following abnormalities: Elevated IgM/IgG
coxsackievirus B titer Elevated IgM/IgG HHV-6 titer Elevated IgM/IgG C pneumoniae titer Decreased NK cells.

[cheshire]

Farmergirl. it what city do live in/near and I'll see if I can search out a good doctor. I use a few resources for this, and there tends to be better luck with this if you live in the States. In the US, Osteopaths seem to be the better doctors for treating thyroid and adrenal issues, but you still want to do research on them before wasting time and $$. Synthroid has a bad reputation for leaving people with hypo symptoms, even when bloodwork (TSH) look great to doctors. If you have some hypo symptoms, and you are on Synth. chances are you are still suffering with hypothyroid issues. And if you are also dealing with pain and synthroid, then my gut says you will need to look at those adrenals of yours as well. Taking synthroid often leads to adrenal/cortisol disfunction.

Curls: I've noticed that reverse T3 has been a problem with the fibro/cfs people on the forums. I've never had my RT3 looked at myself as I got better on Armour and Cortef alone. And my regular doctors would never order any tests having to do with t3 -- and my family doc "doesn't know what T3 is". T3 is actually the active thyroid hormone. As far as i know RT3 blocks the conversion of T4 to T3. I've never dealt with RT3 myself, so my knowledge is limited, but i would suggest that you look into this (google wilson's syndrome) and find an MD who treats it.

By request, my Endo ran Free t3 and it was at the bottom of the range, whereas my Free t4 was at the very top. The problem was very obvious to me at that point. It only took a few hours to feel the difference with Armour. I hadn't been able to enjoy listening to music for a long time, or any loud noises for that matter. But from that point I could enjoy music, and my memory became much better. Also, I had experienced chronic hives for the past year and a half, and once I switched to Natural thyroid med, i never had the hives again (hives is a hypo symptom). Cortef was just as important in my healing process, and when i say "treating hypo properly" I always mean treating with Armour and treating adrenals when need be. You can't fix the problem without dealing with all the issues. In my case, my ferritin was very low (11) as well, and was adding to the exhaustion so I had to supplement with 200mgs of iron for a few months to get it to a healthy range (over 60).

[farmergirl]

wow! I really connect with almost every symptom you have, I take synthroid, but all my pain is explained by doctors because of my degenerative back disease, which I have had 5 back surgeries with fusions and pain continually form nerve damage.. but some of this is not from my back, it moves around and messes with my head... where do you find or what kind of doctor should I seek out to treat my thyroid perfectly.. I am 50 years old and have taken synthroid for over a decade? thank you for sharing your pain and your journey, may you help me with mine.

[Curls]

Thanks for the details.  I'll have to pull out my tests and compare.  Think I can just try some Armour and see if it helps?  I think that's what my mom's taking, and not the Synthroid.  I've had a bunch of these tests are various times.

How do you know that it was the Armour that helped and not the Cortef (hydrocortisone), and ferritin?

What is reverse T3?  Is it a standard test my regular PCP can order?  I've had the saliva and other non-standard tests done.

Thanks,

[PlateletGal]

I'm happy that you mentioned the reverse T3 test. An estimated 80-90% of CFS and FM patients' have normal TSH's, but abnormal T3 results.

[cheshire]

I distinguish Hashis as the autoimmune disorder where antibodies attack the thyroid. But I guess it wouldn't matter, if hypothyroid was caused by whiplash, childbirth, mono, high estrogen, low cortisol etc, as they have most of the same symptoms, except that Hashis causes hyper, panicky, insomia feeling sometimes.

Synthroid is synthetic T4, and as well as having a terrible time on it myself, the usual consensus is it leaves folks feeling hypo, but makes the TSH look good for doctors. I use the canadian brand of the american Armour thyroid. It's a natural hormone and it gives the body what it would normally have in a healthy situation: T1, T2, T3, T4 and calcatonin. When I was on 125 synthroid I had NO energy, and could have slept ALL day, as well as terrible brain fog, and hives, and weak muscles, and couldn't handle loud noises. My doctors were TOTALLY clued out, no matter how much research I presented them with -- they wanted to give me anti depressents for my insomnia and exhaustion, anti inflammatories for my periods, Benedryl for the hives, cortisone cream for the dry skin... very good for the pharmeceuticals but not for me! I may as well have been untreated -- that's how bad I felt. I think they could have easily diagnosed me with CFS, and been done with me.

it turned out that I had low cortisol from long term hypo, that was I treated with Cortef (hydrocortisone), low ferritin treated with iron, and I switched to Armour thyroid and increased my dose myself until i was optimized.

On the forums I've been on I've noticed many CFS and FIBRO people who, after many years of suffering, discovered they actually had hypothyroidism and used Armour Thyroid to get well. I've also noticed there are a lot of Fibro and cfs people taking synthroid, and it makes me so sad for them.

Your TSH should always be under 2. If it is above 3, and you have hypo symptoms, than you know you are hypothyroid without a doubt. However, you can have a TSH of 1.5 and still be hypo. This is called secondary hypothyroidism, when the pituitary isn't sending the message to the thyroid with the TSH. Antibodies will also throw blood tests and can make the Free T3 and Free t4 look normal. This is why it is SO important to run all the right tests and here they are:

TSH But this lab is only for diagnosis of hypopituitary, NOT to diagnose or dose your hypo by.

Free T4 and Free T3 (note the word “free”)

Thyroid Antibodies (anti-TPO and TgAb. YOU NEED BOTH.)

Ferritin (and do stress FERRITIN, not just RBC)

Adrenals Cortisol levels (I strongly recommend saliva tests, not the one time blood test your doctor will do)

B-12,

estrogen, progesterone, testosterone, DHEA

and Reverse T3

And always take a copy of your test results with you so you can do some research.

Ssaliva cortisol tests can usually be ordered through a D.O or a naturopath, or the Canary Club.

[Curls]

What are you taking instead of the synthetic synthroid?  I'm a little unclear, hashimoto and hypothyroid are different illnesses - what's the distinction you're using?  Is the drug for hypo or hashimoto - are different one's used?

For CFS there are recommendations like you're suggesting to be more careful with thyroid testing and even trying out the meds even without positive lab results to see if it makes a difference.  It does help for some people.  There appears to be a distinctive illness separate from hypothyroidism, since it doesn't do the trick in everyone with the CFS or FM symptom set.  It would be good though, if a lot more doctor's considered what you're saying!  

I've had free T3 and TSH.  Can you say more about T4?  I'm assuming the antibodies test is for the hashimoto that's shows up as that?   (I've had that tested).  My T3 and Tsh was at the edge of the high range (or low range when that was the better number), so there didn't seem to be anything more to do with it.  I haven't heard much about differences between synthetic and natural drugs though, so can you say more about that?