# Help! Abnormal but now normal TSH? Still no diagnosis.



## Phayah (Nov 4, 2011)

For many years I've had these strange "episodes" of anxiety, insomnia, panic attacks, trembling, diarrhea, and pain/lump in throat. About 5-6 years ago it got so bad I seriously thought I was dying. I hate going to the doctor but after a 10 day panic attack I felt as if my body was falling apart. The doctor immediately sent me to a psychiatrist who said I had a nervous breakdown.

First TSH: normal

About one year ago, not long after I had my son, I began having numb/tingling sensations when touched. One morning I woke up and my chest/head were buzzing with this sensation. I called my doc who told me to go to the ER. The ER doc said I had low magnesium and "stress". He gave me a script for a supplement and Ativan. I saw no improvement but the Ativan helped by making me not care.

At the followup with my doc she ordered a brain/spine MRI (family history of MS/autoimmune) which came back normal. My TSH came back low and she thought I might have Graves or Hashimotos but the free T4/T3 were normal. She said if I continued to have problems they would do an ultrasound on my thyroid. I moved shortly after that and forgot about it.

Second TSH: 0.25 L (0.34-4.82)
Free T3: 3.6 (2.0-4.4)
Free T4: 0.96 (0.59-1.17)

The past few months have been terrible. My hair is falling out and my periods are irregular, heavy, and almost debilitating. I'm tired ALL the time. I have constant brain fog. I went back to the doc a month ago and she ran a bunch of tests.

Conclusion: TSH, CBC all normal

Well, yesterday I ended up in the ER due to one of my episodes. Symptoms at the time: confusion, slow thinking, stumbling over words, forgetful, trembling, weak, cold hands/feet, sleepy. I almost passed out on the way there. After spending hours waiting on test results I was diagnosed with "general malaise" and dismissed. He did say my thyroid felt like it might be enlarged. However, I just saw someone at a walk-in clinic who claims it's fine and I have the "virus" that's been going around even though I have no temp (97.0) and no congestion. She also did a strep test.

TSH: 0.86

I've been seeing the same psychiatrist for the last 7 months. At my last appointment I expressed concern that I might be bipolar due to my "episodes" but he firmly disagreed. I have been diagnosed with ADHD but this goes far beyond that. My Adderall does nothing but help me keep my eyes open these days.

I have also been on and off various antidepressants since my first episode. They all make me want to sleep ALL day, even at tiny or mega doses. My psychiatrist has come to the conclusion that I simply can't take them.

To summarize: it seems like I'm having episodes of hyper/hypothyroism and a lot of discomfort/pain in my neck/throat. You can go down the list of symptoms for both and I have pretty much all of them at various times.

I have an 18 month old son I have to take care of and I have to get better! Anything that requires physical effort wears me out. It takes everything I've got to get out of bed in the morning.

The only things I can think of are: thyroid, pituitary, adrenals, sleep disorder, or some kind of autoimmune disease. I have yet another appointment on Wednesday.

Does anyone have any tips/thoughts/suggestions? Sorry I don't have all the numbers but I was putting my faith in the docs up until this point.


----------



## Lovlkn (Dec 20, 2009)

phayah,

My suggestion is to order some lab's from HealthcheckUSA.com - the TSH, FT-4 and FT-3 labs cost $85 and can be drawn locally -they can help you locate a draw site.

Have a lab sheet available for when you are having an attack, go have your lab's drawn and begin to develop a tracking sheet.

If you have hashitoxicosis which is Hashi's and graves disease happening at the same time your labs can appear normal because one antibody cancels out the other.

Have they ever done any antibodies tests on you? TSI or TPO antibodies?

I tried for 3.5 years for a thyroid diagnosis because my TSH was undetectable and just when I thought I had a doctor who could help me all my labs were normal. Nine months later I received a diagnosis of Graves from my GYN.

:hugs:I know how hard it can be, especially with a baby to take care of.


----------



## Phayah (Nov 4, 2011)

Thank you so much! No one has checked my antibodies and my T3/T4 were only checked once, last year when my TSH came back abnormal.

We are really broke right now but we have good insurance. Everything is free with no copays but it's through the military. The problem is, the docs I see on base are always in a rush so they never listen for long and I highly doubt they put much thought into it. I was hoping I'd be able to request labs, an ultrasound, or endocrinologist referral.

Should I ask him for free T3/T4 and the antibodies tests? Is he going to look at me like I'm crazy? Would the ultrasound show anything?


----------



## Andros (Aug 26, 2009)

Phayah said:


> For many years I've had these strange "episodes" of anxiety, insomnia, panic attacks, trembling, diarrhea, and pain/lump in throat. About 5-6 years ago it got so bad I seriously thought I was dying. I hate going to the doctor but after a 10 day panic attack I felt as if my body was falling apart. The doctor immediately sent me to a psychiatrist who said I had a nervous breakdown.
> 
> First TSH: normal
> 
> ...


Welcome to the board!! I believe you are hyper and I also believe that you have been probably falsely diagnosed by psychiatric profession..

Please get this test.

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

Since you have had or have pain and lump in the throat, if I were you, I would insist on RAIU (radioactive uptake scan) to make sure you don't have cancer.

And if you do; early intervention is essential.

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

Here is some psychiatric info as to what a bad thyroid can do to you!

http://www.psycheducation.org/thyroid/introduction.htm

Psychiatric Manifestations of Hashimoto's Thyroiditis
http://www.drrichardhall.com/Articles/hashimoto.pdf

Graves', neuropsychiatric
http://www.ngdf.org/cms/modules/files/uploads/7699.PDF

hypo, psychiatric
http://www.biopsychiatry.com/hypothyroidism.htm

I would scream at the top of my lungs for RAIU and TSI.


----------



## Phayah (Nov 4, 2011)

Thanks, I really hope it isn't cancer! Scary stuff.

I talked to a friend of mine who is also a nurse. I was telling her my symptoms and found out she has Hashimotos! She told me everything I'm going through sounds very similar to what she has gone through.

I've had the lump/discomfort/pain off and on for YEARS. The first time I felt it was when I was 12. My friend said she gets it too so hopefully it's not cancer. If it is I might be screwed considering how long its been going on. I'm also a smoker so that doesn't help. =(

TMI!! My cycles have been getting shorter and shorter. The last was 21 days and my period lasted 8 days. I think I just started again and that would make this next cycle 16 days! So, I've only had about a one week break.

Can you be hyper and be overweight? I've struggled with gains AND losses but I've mostly stayed overweight. Right now it seems like I'm about to go through another gain. I don't have the bulging eyes either. The only thing that IS consistent is my rapid heart rate. I'm pretty much 100-130 all the time.

The ER doc freaked me out by saying its possible I have an arthritic or connective tissue problem. I don't even know what to do anymore. He ran a bunch of tests checking for inflammation but found nothing. He said my C-protein was elevated but too close to normal to indicate anything because it's a highly sensitive test? Anyone have a clue about that?

PS - I'm only 27. The guy taking my blood kept saying I was too young for those tests he was taking. =(


----------



## Andros (Aug 26, 2009)

Phayah said:


> Thanks, I really hope it isn't cancer! Scary stuff.
> 
> I talked to a friend of mine who is also a nurse. I was telling her my symptoms and found out she has Hashimotos! She told me everything I'm going through sounds very similar to what she has gone through.
> 
> ...


Oh, indeed you can be hyper and gain weight. I did and so have many others. Symptoms can and do cross over.

I hope and pray it is not either but bottom line here is we have to know. One way or the other. Glad you have a friend who is a nurse. She can help you also.

I smoked for 44 years. Right now, don't fret over that too much. You could cut down a bit maybe. Hypers smoke and here is why.......

Smoking and antibodies
http://jcem.endojournals.org/cgi/content/abstract/94/4/1324

It's a self-medicating mechanism on a sub-conscious level. Don't stress over this. When you are ready and if you want to, you will quit.


----------



## Phayah (Nov 4, 2011)

Thanks. I guess I'm just a little overly emotional at the moment. I really hate it when I'm like this. I also worry about my son because I have to stay at home alone with him all day. Also, I can't find anyone to watch him part-time so I end up having to take him with me to appointments or my husband has to take off work. I just feel like I'm screwing up everyone's life right now.

Hauling an 18 month old around everywhere is a struggle even when you feel good. He wants to run around, eat stuff off the floor, and throw tantrums. So, I'm in a hurry to get this figured out. On the other hand, if I didn't have him around I might just give up on this altogether.


----------



## Andros (Aug 26, 2009)

Phayah said:


> Thanks. I guess I'm just a little overly emotional at the moment. I really hate it when I'm like this. I also worry about my son because I have to stay at home alone with him all day. Also, I can't find anyone to watch him part-time so I end up having to take him with me to appointments or my husband has to take off work. I just feel like I'm screwing up everyone's life right now.
> 
> Hauling an 18 month old around everywhere is a struggle even when you feel good. He wants to run around, eat stuff off the floor, and throw tantrums. So, I'm in a hurry to get this figured out. On the other hand, if I didn't have him around I might just give up on this altogether.


Sounds like a normally active little 18 month old boy! And mommy does not feel up to snuff. Not good.

We have to get you feeling better so you can enjoy each and every day w/your family.


----------



## Phayah (Nov 4, 2011)

I have to say, the bipolar connection is very interesting. My mother has been diagnosed as bipolar but she also has multiple sclerosis. Her sister, my aunt, has also been diagnosed as having bipolar disorder.

I talked to my aunt the other day and she told me she had episodes like mine and her hair falls out, weight changes, etc. She said she has had her thyroid checked and it was normal. I know my mother's weight fluctuates a lot as well but I don't think she's ever had her thyroid checked.

My psychiatrist seems quite certain I do not have bipolar disorder though. I do have strange episodes but they do not meet the criteria for any mental illness he has heard of (lol). I'm terrified of going insane. It seems like it's getting worse and worse.


----------



## Andros (Aug 26, 2009)

Phayah said:


> I have to say, the bipolar connection is very interesting. My mother has been diagnosed as bipolar but she also has multiple sclerosis. Her sister, my aunt, has also been diagnosed as having bipolar disorder.
> 
> I talked to my aunt the other day and she told me she had episodes like mine and her hair falls out, weight changes, etc. She said she has had her thyroid checked and it was normal. I know my mother's weight fluctuates a lot as well but I don't think she's ever had her thyroid checked.
> 
> My psychiatrist seems quite certain I do not have bipolar disorder though. I do have strange episodes but they do not meet the criteria for any mental illness he has heard of (lol). I'm terrified of going insane. It seems like it's getting worse and worse.


Your psychiatrist is a medical doctor first and foremost; he or she should be able to get to the bottom of a metabolic disorder.

Just because a test result is in normal range means nothing to me. As far as I am concerned, ranges are to establish a "baseline" and to detect any movement either up or down. Ranges are established from the mean average of a "supposed" cohort of the population.

When I hear labs are in normal range, I usually see red. That is like the biggest dismissal in the world to me!

I "knew" you would like that one site especially. It kicks butt w/credible information.


----------



## Phayah (Nov 4, 2011)

I remember my psychiatrist giving me some curious looks when I told him I would go through periods of intense anxiety lasting a week to months. Between those it seems as if I have symptoms of depression but I'm not depressed. Antidepressants just make me not care and they worsen my somnolence, sluggishness, and apathy. I also still have anxiety episodes on antidepressants.

I will be seeing a psychologist on Tuesday who should have more time to spend with me. Perhaps she can give me some insight.

On Wednesday I'm seeing a different family doc in the same clinic. He is the guy who sees my son at checkups so it's gonna be kinda awkward. I will see if he will order the full thyroid panel/ultrasound and if he has other ideas. If not, I will probably order a test myself. The inflamed feeling in my throat has gone away so I'm not sure what to think of that.

TMI - Do any of you females have bleeding after intercourse? I've only had it once right after my son was born and they prescribed estrogen cream. Now, I have a copper IUD and they're trying to blame my period/female problems on it but I've had it over a year. I don't want it removed unless it's absolutely necessary. It seems crazy to remove a 10 year birth control based on a "suspicion".

I'm currently prescribed Adderall but I honestly think it has been covering up my symptoms. I've been taking it for 6 or 7 months but about 3 months ago I noticed all it was doing was keeping me awake. I also read that Adderall can skew the results of a thyroid test. Anyone know? I tried not taking it for the last few days but I've been sleeping almost 24/7. I gave in and took 1/2 of one today so I could stay awake and spend time with my son.


----------



## Enigma (Jun 13, 2011)

phayah-

Wow, this sounds like me. Even to the ADHD diagnosis. The only difference is that my TSH was 15.4 (scale .4-4.0) and TPO antibodies were 869 (0-9). That got me the Dx of hashimotos (after 10 years of elevated TSH that no one cared about, anti-depressants, and ADHD meds). ADHD meds help, but I think that a big underlying problem is my not optimally treated thyroid. ADD meds seem to mask how I really feel and I totally CRASH if I don't have them.

I had a TSI drawn this past Thursday, hoping it will be back by tomorrow. I don't want to have Grave's antibodies, too, but it would explain everything I'm going through since starting thyroid meds.

I'd check into adrenals if I were you, too. Treating those have helped me tremendously. I'd also look into Rhodiola Root.

Here is some info that really helped me:

Hashimoto's Misdiagnosed as Bipolar
http://drknews.com/when-hashimotos-is-misdiagnosed-as-bipolar-disorder/

Rhodiola Root
http://www.amazon.com/Rhodiola-Revo...294X/ref=sr_1_1?ie=UTF8&qid=1320606798&sr=8-1

Adrenal vs. Thyroid
http://www.drrind.com/therapies/metabolic-therapy#repair

Really in-depth review of adrenal symptoms and causes 
http://www.drlam.com/articles/adrenalexhaustion.asp

From this board's creator, info on people with both Graves and Hashi's antibodies (sounds familiar to your story and mine)
http://www.thyroidboards.com/hashitoxicosis/


----------



## Phayah (Nov 4, 2011)

In that article you linked they talked about gluten and dairy. Well, for the last 6 months I've been on a very low carb diet. I have been eating dairy the entire time but not gluten.

A few months ago I started adding some low carb products that contain gluten/soy. Well, that is around the same time I started having a "flare up". Most notable is the immense brain fog and throat tightness. At first, I thought it was a food allergy but then I read about Celiac disease (gluten intolerance). So, I've been reading about the gut-brain connection. Very interesting stuff...

Anyway, I'm contemplating going on an elimination diet. I had never heard of food sensitivity or intolerance before but it makes a lot of sense. I've also had chronic migraines and digestion problems since childhood.

Either way, I think it's worth a shot if it might make me feel better. I just don't have the energy to do it right now. I pretty much abandoned my low carb diet a couple of weeks ago because I can't make myself go grocery shopping or cook.


----------



## Enigma (Jun 13, 2011)

Phayah,

I also started a gluten free and (recently) dairy free diet. I had some IgE food allergy tests done and came back with extreme sensitivity to casein and whey. I've had celiac blood testing and biopsy (though the biopsy was done after being on a GF diet for several months, but they were "down there" so thought they'd check anyway). Both were negative. Since going dairy free i have felt much better and many of my skin problems have cleared up. I slipped and ate dairy last weekend and could feel myself become worse and worse over the next several hours. I was jittery adn couldn't sleep, moody, and had stomach/bowel issues. My doc explained that many people become addicted to what they are allergic to because of the adrenaline rush that the body releases to combat the allergic reaction. I definitely could feel this when I ate the dairy.

But it has been really hard to do these diets- a whole new level of stress in and of themselves. But it has really helped.

If you can afford it, I would highly recommend getting a food allergy test done. That way you can kind of focus more on what seems to really be causing the problems rather than just trying things here and there. Of course, you'll find things that don't "show up" that still bother you, but the major things should come back with results.

I have had many stomach problems too. To the point of waking me up in the middle of the night every night. I have found that antacids didn't help, or made it worse, and that digestive enzymes with betaine HCl have helped. I had low stomach acid, not high, which the Nexium et al. were making much worse.


----------



## Enigma (Jun 13, 2011)

I'd also search of a list of goiterogens (spelling?) - foods that make your thyroid inflamed. I had been eating sauerkraut to help with my stomach issues, and found I was becoming more and more symptomatic and my thyroid was really hurting. I have stopped for the past several days and my thyroid doesn't hurt as much and my symptoms are a bit better. The same things happened with Omega-3 flaxseed supplements.


----------



## Phayah (Nov 4, 2011)

Hm, I've been reading up on Grave's disease. I was originally thinking Hashimoto's for sure, but it really could be either one or both, or something else entirely. =|

Even though I don't have bulging eyes, I wake up with my eyelids literally stuck to my eyeballs because they are so dry. I sometimes have blurry vision/irritation from the dryness and was prescribed some natural tears at my annual eye exam. My eyelids have felt puffy the last few days though.

I also have vitiligo but I'm so pale now you can't see it anymore. When I was a teenager I was determined to even out my skin tone but failed. I gave up and refused to get out in the sun because my shoulders and upper arms would never tan or burn. It looked awful but its undetectable now.

It still doesn't explain everything. While I do have an intolerance to heat, sweating for no reason, and prefer cool temperatures I still get really cold hands/feet. I can't STAND for my feet to get cold so I wear socks a lot. I have problems losing/gaining weight but it seems rather sporadic, as if it has a mind of its own. My face is puffy, particularly under my chin.

I really hope this doc will run all the tests and do the ultrasound. He is probably going to think I'm crazy. Surely he will do the tests? I will be a little disappointed if he just refers me to an endocrinologist and I end up having to wait a month or more. It's better than being dismissed though.

I keep reading the TSH test is very accurate however current thyroid patients disagree so I'm confused! Perhaps I should ask for some kind of adrenal or pituitary screening as well?

My appointment is Wednesday morning and I have no patience at all. I will update. =D


----------



## Phayah (Nov 4, 2011)

Enigma said:


> I'd also search of a list of goiterogens (spelling?) - foods that make your thyroid inflamed. I had been eating sauerkraut to help with my stomach issues, and found I was becoming more and more symptomatic and my thyroid was really hurting. I have stopped for the past several days and my thyroid doesn't hurt as much and my symptoms are a bit better. The same things happened with Omega-3 flaxseed supplements.


I remember reading somewhere that the highly processed soy used in the US can negatively impact the thyroid. I've also read there is a strong connection between dairy and multiple sclerosis, which my mother has.

I'm going to set up an appointment to discuss Celiac or other food allergy/intolerance screening. I've read a lot about it and it really seems like everyone should get screened for it, particularly people with digestive issues. It seems like a lot of health issues might be prevented through that. If I could fix my problems by changing what I eat I'd be all over it! I'm planning to try it anyway, just to see how I feel. =D

I had always considered food sensitivities to be "voodoo nonsense" until I went on a very strict meat, veggies, and dairy diet. My problems didn't go away but I noticed when I started adding certain foods back in I got significantly worse.


----------



## Phayah (Nov 4, 2011)

I really wish I knew why Adderall seems to irritate my thyroid. I've had to lower my dose or simply not take it. If I don't take it I will sleep all day. I'm so screwed. =(


----------



## Andros (Aug 26, 2009)

Phayah said:


> Hm, I've been reading up on Grave's disease. I was originally thinking Hashimoto's for sure, but it really could be either one or both, or something else entirely. =|
> 
> Even though I don't have bulging eyes, I wake up with my eyelids literally stuck to my eyeballs because they are so dry. I sometimes have blurry vision/irritation from the dryness and was prescribed some natural tears at my annual eye exam. My eyelids have felt puffy the last few days though.
> 
> ...


Vitiglio could suggest Lupus. Have you been tested? Anti-DNA, C3, C4.

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


----------



## Phayah (Nov 4, 2011)

Andros said:


> Vitiglio could suggest Lupus. Have you been tested? Anti-DNA, C3, C4.
> 
> You can look this stuff up here and more.........
> http://www.labtestsonline.org/


I have looked at this possibility but it seems too scary to consider. =(

What is C3 and C4? I know the ER doc thought I had an arthritic/connective tissue condition and he did a CBC, C reactive protein, ESR, and some other stuff checking for inflammation.

I'm fairly certain he didn't do an ANA. I was experiencing confusion at the time but I think I asked him about that.

Also, he said the C reactive protein was slightly above normal but too close to be conclusive. He said it was a highly sensitive test. I left before the results of the ESR. I will ask my doc about it on Wednesday, he should have all the results.

What do you think? Still possible?


----------

