# New to Synthroid - How long am I going to feel this bad?



## kris4913 (Aug 2, 2012)

So I won't go into everything but I have been miserably sick for several months - fatigue, weakness, mental fog, pain, etc and I am searching for answers & hope. Tests have ruled out Lymes, Lupus, RA, Mono, & Toxo. History of IBS, mitral valve prolapse, neurocardiogenic syncope.

Results of thyroid panel:
TSH - 2.65 (was 1.99 in 2010 - previously tested when my IBS suddenly switched from IBS with diarrhea to IBS with constipation)
Free T4 - .74 (normal .71-1.85)
T3 total - 1.23 (normal .87-1.78)
Thyroglobin Antibody - 1.0 (normal <4.0)
TPO - 1.60 (normal 0-9)
Reverse T3 - 289 (normal 90-350)
Also did an ultrasound of my thyroid b/c I was having feelings of dysphagia. It was normal - no masses, nodules, of normal size.

Doctor gave me the option to try Synthroid because of my extreme symptoms even though my values are all within normal ranges - though Free T4 is very low normal. Started on 25mcg/day on Monday. 
I feel jittery, can't sleep (going to bed at 11pm & waking around 3:30-4am), nauseous, diarrhea, I feel like my heart is pounding though pulse is right at 60bpm, no appetite. I don't know if this is just a part of getting use to the med or if these are some crazy side effects or signs that something isn't right??? The not being able to sleep is weird because I had been sleeping 12-15hrs a day with my fatigue.
Any thoughts would be greatly appreciated!!
Kristin


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## joplin1975 (Jul 21, 2011)

I felt that way when I first tried synthroid, prior to knowing my thyroid had to be removed, and I had a similar experience. My husband made me stop taking it when he found me up at 3:30am doing dishes and sweating. 

It sounds like you are caught in the crummy spot where you are starting to feel the symptoms of thyroid disease but can't yet totally tolerate the medication. I don't know if it goes away/you get used to it because I only fiddled with it for a week. But, I would strongly suggest you speak to you doctor. You don't want your heart working that hard and I know that it feels awful -- a different type of tired -- when you can't sleep/settle down.

You might be able to split the pill and take 12.5mcgs a day, but again, talk to your doctor about that.


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## Andros (Aug 26, 2009)

kris4913 said:


> So I won't go into everything but I have been miserably sick for several months - fatigue, weakness, mental fog, pain, etc and I am searching for answers & hope. Tests have ruled out Lymes, Lupus, RA, Mono, & Toxo. History of IBS, mitral valve prolapse, neurocardiogenic syncope.
> 
> Results of thyroid panel:
> TSH - 2.65 (was 1.99 in 2010 - previously tested when my IBS suddenly switched from IBS with diarrhea to IBS with constipation)
> ...


What do you mean by nodules of normal size or does that mean the thyroid it's self is normal size?

There are 3 things I personally know of that could cause a person to not be able to tolerate a low dose of T4. The patient is hyperthyroid, the patient has cancer or the patient has ferritin in the basement.

I am going to post some antibodies tests. It would be good to get the one's you did not get. Also, a FREE T3 would be extremely good to get.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Ultra-sounds can sometimes leave a lot to be desired.

And..........are you taking the name brand Synthroid or a generic?

And just so you know, I suspect hyper (believe that or not) and when a person is hyper, they become exhausted because even at rest the metabolism is in high high gear.

Plus symptoms can and do cross over.


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## kris4913 (Aug 2, 2012)

Thanks for the replies.
Sorry for the confusing wording - US of thyroid was normal, meaning no masses, no nodules, & no enlargement of thyroid.

Looking back through all of the tests we've done. Hooray for being able to log into my insurance and see things that have been tested, but boo for not being able to view results that way! I am seeing a Rheumy on 8/24 so I will be getting copies of everything shortly & can provide more info then.
ANA & titer - positive speckled 1:80 titer
Rheumatoid factor - neg
Neg for Lyme & Toxo
Sed rate <20

Tests I can see were done & normal/neg even though I don't know specifics:
EXTRACTABLE NUCLEAR ANTIGEN, ANTIBODY TO ANY METHOD, EA. ANTIBODY
DNA ANTIBODY, NATIVE OR DOUBLE STRANDED
PROTEIN, ELECTROPHORECTIC FRACTIONATION/QUANTITATION, SERUM
PROTEIN, TOTAL EXCPT BY REFRACTOMETRY, SERUM, PLASMA OR WHOLE BLOOD

Basically I have been having joint pain, extreme fatigue, mental fog, difficultly concentrating, feeling very emotional, etc. I have always wondered if I was hypo because of how I am - low BP often 90/60, low HR, always cold, dry skin, etc + history of hypo in family. It has always seemed like everything was running slow.


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## Andros (Aug 26, 2009)

kris4913 said:


> Thanks for the replies.
> Sorry for the confusing wording - US of thyroid was normal, meaning no masses, no nodules, & no enlargement of thyroid.
> 
> Looking back through all of the tests we've done. Hooray for being able to log into my insurance and see things that have been tested, but boo for not being able to view results that way! I am seeing a Rheumy on 8/24 so I will be getting copies of everything shortly & can provide more info then.
> ...


When the report says "negative", do they mean "0"? Because the healthy patient should not have any of these antibodies even if they are below the range.

You will get things sorted on the 24th.; I am sure of it. It can't come too soon!


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## kris4913 (Aug 2, 2012)

"When the report says "negative", do they mean "0"? Because the healthy patient should not have any of these antibodies even if they are below the range."

That's what I was wondering since my TPO 1.6 & Thyroglobin Antibody was 1.0.


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## bigfoot (May 13, 2011)

Welcome! :anim_32:

Another thing to keep an eye on is that pesky Reverse T3. Yours is getting up there. The idea is to have a good ratio of Free T3 versus Reverse T3. Below are a smattering of web sites on Reverse T3, compounded medications, as well as adrenal & cortisol issues. Keep Vitamin D and B-12 deficiencies in mind, too. Don't overlook things like Celiac disease (especially with your IBS) or even the runner-up, a gluten intolerance or sensitivity. Might try going fully gluten-free; FYI, it takes 3+ weeks to fully kick in. Some of us have noticed a world of difference.

There seem to be to schools of thought on the Reverse T3 issue; one is to address it with T3-only medication (either using the Wilson's treatment protocol or just low amounts of T3 itself), the other is theory is that it something your body will just deal with over time. They say stress, illness, high cortisol, etc. can bring on this change, where T4 is shunted to the inactive form of T3 (called Reverse T3), which blocks the T3 receptor sites. Bottom line is you are taking external T4 medication (Synthroid) which may possibly be exacerbating things.

http://thyroid-rt3.com/
http://www.custommedicine.com.au/health-articles/reverse-t3-dominance/
http://thecompounder.wordpress.com/2010/02/04/thyroid-madness-apparently-so/
http://www.drlam.com/index.asp

IMHO, there are a few things I would consider right now in the early stages, although you've already covered a lot of bases (which is awesome):

* Get Free T3 and Reverse T3 tested at same time
* Take saliva 24-hour test for adrenals and also gluten sensitivity
* Start taking Selenium (no more than 200mg a day)
* Avoid heavily processed foods, junk food, caffeine, and consider a gluten-free trial
* Use a liquid fish oil daily (Carlson's is a good brand)
* Take mild amount of B-12 ("methyl" variety, sublingual) if you're low
* Take moderate amount of Vitamin D (~2,000 IU) if you're low
* Find a good-quality, once-daily multivitamin (try health food stores or places like Whole Foods)
* Drink lots of water

As usual, the FDA's Recommended Daily Allowance (RDA) for a lot of vitamins, supplements, etc. is pretty low. Try and work with your doc or a knowledgeable alternative-medicine doc on this stuff. It can be dangerous to just start popping a bunch of supplements OTC on your own (as I've discovered).


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## kris4913 (Aug 2, 2012)

Even though I have been tested for celiacs multiple times (blood & microvilli samples) I did GFree for over 12weeks with no improvement, but I know a lot of people have improvements in energy & bowel function without it. Sadly no help.


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## kris4913 (Aug 2, 2012)

Just got back from Dr & he said to stop taking Synthroid so I don't have heart complications. He said that it is normal to feel funny/different when starting it but that my side effects are pretty severe for such a low dose & since they happened so quickly.

Kind of sucks! As much as being this jittery and not sleeping more than a a few hours the last few days is no good, it was actually better than how I was previously.


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## RH789 (Jul 30, 2012)

Kris, I can definitely relate to your story a bit. My thyroid TSH is 2.79 while on no thyroid hormone, very close to yours. I got on Synthroid and did not have much luck in the four months I was on it (50 mcg). I am still looking for answers, so I sadly do not have much to offer, but if you want to read my situation check my profile and my previous post. Just like you, I have a rheumatologist appointment scheduled for next week. I don't know what they will find, I suspect they will offer an anti-depressant and tell me to shut my mouth.


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## Andros (Aug 26, 2009)

kris4913 said:


> "When the report says "negative", do they mean "0"? Because the healthy patient should not have any of these antibodies even if they are below the range."
> 
> That's what I was wondering since my TPO 1.6 & Thyroglobin Antibody was 1.0.


Aha!! You see? Nothing wrong with your brain cells, that is for sure. The only reason there is a range is so that a "baseline" can be established and to detect movement either up or down based on treatment regimen or the absence of a treatment regimen.

You should have a little TPO, but no TPO Ab and the same is true for the Thyroglobulin.

Something is afoot and since these antibodies wax and wane, sometimes they are higher, sometimes lower.

Here is info.

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO.
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

Thyroglobulin Ab
A negative test is normal. A negative test means no antibodies to thyroglobulin are found in your blood.
http://www.nlm.nih.gov/medlineplus/ency/article/003557.htm
(The normal thyroid has Thyroglobulin in low titers but should not have Thyroglobulin Ab)


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## sleepylady (Mar 18, 2012)

Is it possible that she just can't tolerate Synthroid? Can you get a lower does of a natural thyroid hormone or another synthetic? Complete newbie so just wondering if this is possible.


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## kris4913 (Aug 2, 2012)

Thanks for the ideas everyone! I finally slept today. I got about 4hrs over night and took a 2 hr nap so that helped quite a bit. Even without taking the med today, my heart still pounded all day and I threw up all morning.

After being so bad so quickly I am a little gun shy about trying something else right now. I will probably wait for the rheumy appointment & see what she thinks about trying other options. 
I think my GP is getting tired of me from my appointment on Friday when we said to stop synthroid. Sent me home with a trial starter pack of Savella (antidepressant-like for fibro). It has always seemed like like a doctor is out of ideas and tired of me they throw an antidepressant at me. Not sure if I want to try it yet.


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## RH789 (Jul 30, 2012)

Kris, that is wonderful you were finally able to get some rest. I know when I am tired, every symptom I have is amplified x10. May I ask, what do you think the rheumatologist is going to have to say? Isn't this a thyroid issue for you? Or, do you have (or suspect) something else is wrong with you? Have you been diagnosed with fibro?

We sound very similar. I haven't found what works for me, yet.

Also, do you have any family history of thyroid issues? I do not.


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## kris4913 (Aug 2, 2012)

Not really sure what my problems are hahaha. After the positive ANA my GP thought seeing a rheumy might help if this is all something autoimmune. When my first symptoms started it was mostly joint/body pains, headaches, nausea, fevers, & fatigue. 
Never been diagnosed with fibro, but it is a possibility - esp since I have IBS. It sounds like a lot of people have both.


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## kris4913 (Aug 2, 2012)

My grandmother & uncle (both on mom's side) are hypo. I thought a hypo diagnosis would fit - tired, low bp, low hr, etc.


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