Thyroid Disorders Community
Highly symptomatic, but normal test results
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Highly symptomatic, but normal test results

I was recently diagnosed with Hashimoto's thyroiditis.  My test results showed normal thyroid hormone levels (I'm not sure if they did an antibody test as well).  I've been experiencing overwhelming fatigue, trouble concentrating, forgetfulness, muscle weakness, joint and muscle pain (sometimes severe), sensitivity to hot and cold temperatures, sleepiness (I never wake up feeling rested), and sensitivity to medications.  I have experienced fatigue since the age of 11, but it has worsened in the past few years. I am a 22 year old female.  I have so many of the symptoms of hypothyroidism, could my thyroid still not be functioning very well despite normal test results?

I am a senior in college and I have every intention of attending graduate school programs but I simply will not be able to effectively do what I want to do with this level of fatigue.  Even if I felt only 20% better it would be like being reborn.  I'd be a thousand times more confident about continuing my education.  Any advice would be great.
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620923_tn?1401820681
I do not have a copy of my labs, but were told they were normal?? I do have nodules they have been checking with ultra sounds....one nodule grew slightly and they r still just waiting, while I have the symptoms u described...I am not on meds at this time...if only I would wake up and it felt like I was rested...wow!! I used to want so many other things.....oh well...u r young and know what u can and can not handle.....my daughter just finished grad school and it was very draining.....unfortunatley u need to do the same as me, push for more answers from ur dr- or find a new one.
Depending on ur course load u may handle grad school with no problems....ask ur dr.

Good luck
Godspeed
"selma"
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653142_tn?1224804820
I just spoke with my GP and he's okay with starting me on some meds. It would be a low dose but I'm so miserable, I have to do something.  Grad school is draining no matter what.  I have wanted to be a veterinarian my entire life, I have a lot of schooling ahead of me, and I want to be able to make it through all of it.
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653142_tn?1224804820
Also, Selma, thank you for the good wishes.  I'm sorry you're suffering as well, I hope you find some answers too. Do you have Hashimoto's as well? I've heard that normal test results might not indicate normal thyroid function, and that treatment in such cases is still beneficial.

I just want to feel better!
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620923_tn?1401820681
U r so welcome......awwwwww I love animals..I am sure u will be very good at it especially since it's been a dream for so much of ur growing up and it didn't change....my daughter asked to take dance lessons at 2.5 and now has her masters in dance ed......yeah ...it's hashimotos.....I am confused as to y I am not on meds yet...my  skin is soooo dry...never had dry skin.....I do have other health issues adding to my list of symptoms, so maybe that'd y the drs r reluctant to put me on meds.

I am sure u will do well in school...just pace urself.

"selma"
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Avatar_f_tn
I have the same issue ... have all the symptoms but all blood work is normal.  I do have a nodule as well that has to be rechecked in 6 months and a slightly enlarged thyroid.  My doctor has suggested a very small dose of levothyroxine to try to shrink it but it seems there is some controversary as to whether or not it can be beneficial.  Supposedly it's the nodule that causes these symptoms.

agb621, I'd see about having an ultrasound done.  That's how they discovered my issues.  
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620923_tn?1401820681
How long since ur nodule was discovered?...mine were found in April....still no meds...did ur symptoms dissapate with the meds?
I just need my PC to get with the program and understand I do have symptoms...who wants a sore throat constantly?? ....not me!!..I need something done soon.

Thanks for sharing ur info.

Godspeed
"selma"
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653142_tn?1224804820
I had an ultrasound, that's how they discovered I have Hashimoto's.  I don't have any nodules yet.
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487969_tn?1249316891
I am a very symptomatic thyroid patient with perfect labs but a swelling thyroid.  My doc gave me a trial of synthroid, then I fired him after pretty much telling me I had to take the medication but did not have a thyroid problem.  Now however, I see an ENT and am still medicated.  The ENT switched my medication to Armour.  Very thankful for the medicine b/c it does help, just wish they could finally say "Kim, you have .........," that would give me a little piece of mind.  I still think I have hashi.  Anyway, you should give the trial dose of meds (especially synthroid or levothyroixine) about six weeks to take effect.  I did see a difference (at first) after about 2-3 weeks.  When I switched to Armour, I noticed the symptoms deminish dramatically within a few days (except the swelling thyroid).  Hope this helps!!!
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620923_tn?1401820681
Thanks mommy....I asked a question earlier about should I see an endo or ENT dr for Hashimotos.....cuz I am the opposite of u...know what I have, just not medicated.


"selma"
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653142_tn?1224804820
That is very helpful and encouraging, Kim.  I have an enlarged thyroid as well, my endocrinologist told me it looked like classic Hashimoto's.  She said it wasn't necessarily causing my fatigue, I guess at 22 I'm still a bit young for Hashimoto's to be causing hypothyroidism. It's so frustrating though, I've seen so many doctors and it feels like none of them get exactly how miserable I am. I hide it well, I've been dealing with it for 11 years and I'm too stubborn to let it keep me from finishing school. I hid how tired I was for a long time, I guess I didn't want people to know how bad I felt because I didn't want them to tell me I couldn't do things (like drive myself to school back in high school, when my school was 25 miles away). I didn't even realize how abnormal I was until I got mono and didn't feel all that slowed down by it, even though I was quite ill. Everyone else I knew who'd gotten mono remembered it as being the most tired they'd been and for me, it wasn't all that different from how I normally felt.  That was when I decided to really actively pursue the cause of my fatigue.  That was over 2 years ago.  But when I see doctors, I try to explain to them how detrimental it is to my life and how utterly miserable it makes me and they just shrug it off. It's so frustrating.
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479581_tn?1317761088
Hi....I had normal labs for years and, like you, just went about life no matter how tired I was.  Last March my doc (a gp) tested me for antibodies and made the dx of hashimoto.  My TSH and T4 were still within normal range.  

I've been taking 50mg of levo since june and most symptoms have lessened although I'm still tired....Unlike you I'm 52; so I guess some tired comes with the territory! LOL

You might be very pleasantly surprised at how much better you will feel, even on a low dose of meds.......Good Luck  :)

Sandy
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653142_tn?1224804820
Sandy - Thanks for the encouragement, this whole thing has gotten me really depressed. I've been crying for an hour, I can't seem to relax about it. Maybe I'm getting sick or something, I don't know. I just felt like I really had my hopes on getting a real answer finally, I've missed so much of my life and I'm not getting nearly as much out of my college experience as I should and I'm always going to regret that. But if my brain doesn't feel like it's functioning, what am I supposed to do? I can't get around it.
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534785_tn?1329595808
I can really relate to you--I was always extremely fatigued during my undergraduate years (just graduated last May, so I'm a year ahead of you), my memory was going downhill, and I had consistent headaches coupled with a general feeling of malaise. I didn't get as much out of my college experience as I deserved, but I realize at this point, there's no turning back. I became really ill my final semester during senior year, and that was incredibly rough...I still haven't gotten an answer as to what's going on with me, but my thyroid panel was the first thing to show up abnormal in my bloodwork...hence, why I'm here.

I'm in graduate school right now and it's not easy, at all. But it was driving me crazy to sit around and do nothing, so I knew that it was better I moved ahead with my life, realizing how challenging it was going to be with my current health, rather than stew all day everyday, bored out of my mind and having nothing to focus on but how sick I was feeling that day. I'm glad I decided to do it, but it is tough. It's a decision you'll have to make for yourself when the time comes, but I would recommend applying to graduate schools now, and then deciding later (since the applying part needs to happen within a certain time period). I also opted to stick close to home so I could have my parents nearby, as my Mom has been a big help with reminding me to schedule my next MRI or when my next appointment with a specialist is.

There's never any easy answer when it comes to our health, since our bodies are such complex systems. The best advice I can give to you is to not let your illness become you. If you think, "I'd do that, but I can't because I'm sick," or "Well, there's no point in even trying to study because I won't remember this since I'm not feeling well," you'll feel even worse in the end. You are realizing you have certain limitations now, which isn't fun, but you're right--some of it you can't, and won't, get around. But you can adjust your life to accommodate the illness, realizing it won't be like this forever. Continue seeing doctors, trying new treatments and medication, and adjust your lifestyle to help your body repair itself as best it can (eating better, getting more sleep or getting on a regular sleep schedule, etc.) while your doctors do what they can to make you feel better. Another piece of advice I can give you is to always ask questions and don't give up--if you know something is still wrong with you, keep going to doctors until you find one who is willing to coordinate your care and fight for you. Having one good doctor (even if it's just a GP) is better than having 3 mediocre ones who aren't interested in your case, or you, as a patient.

You're still very young and you still have a lot of your senior year left, so don't look at this like it's the end all be all. You'll be a stronger person in the end for fighting through it--but you have to make the decision to do that, right now. Honestly, I felt terrible when I allowed myself to wallow for any extended period of time. Now, I feel better knowing I managed to complete the same homework everyone else did, and everyone else (in all likelihood) isn't sick! And I still find the time to have fun and do things that I enjoy in what little free time I have...granted, I have no where near the amount of energy I used to have, but I've accepted that I'm sick for the time being, so there's no use letting that drag me all the way down. It's not fun, as I mentioned, but you get used to it knowing that it won't be this way forever. I'm just glad to know I'm not worse off.....and there is plenty of hope for you; thyroid disease is very manageable! It just takes some time to really "record" how your system is responding to the hormone fluctuations, and then figure out how to best treat the problem. In due time, you probably won't even think twice about your thyroid issue except when you have to take your medication.

If you want anymore input or someone to listen, just let me know. Even though my memory has been shot as of late, I'll remember to check back here! Just hang in there, and I hope you feel better soon.
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Jules - Thank you for the thoughtful post. You're absolutely right, I should feel a huge sense of accomplishment that I've made it this far and do all right considering how sick I've been. It's just hard for me to feel proud of things that "normal" people can do, which I know is silly.

My doctor decided that starting a treatment might not be a good idea because my bloodwork indicated I'm closer to hyper (not hypo) thyroidism. This could obviously be the fluctuations associated with the Hashimoto's. I went to get more bloodwork this morning so we'll see if that shows anything.
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534785_tn?1329595808
Sounds like you're moving along with the diagnosis/treatment at a pretty fast clip. Soon you'll be right as rain! Keep us posted on how things are going--I'd be interested to hear what the bloodwork shows. Mine fluctuated a lot at the beginning of my "illness" and my doctors have since stopped monitoring it, which is a shame. Fluctuations are normal, but large fluctuations aren't, so I hope your bloodwork tells you something, even if it's just a trend.
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Out of curiosity, what are you looking to go to graduate school for?
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653142_tn?1224804820
Well, currently I'm in a classics program, but I want to be a veterinarian, so I have to do a post-baccalaureate program in order to get the requirements I need for vet school out of the way.  These programs are usually pretty intense, they pack a lot of difficult courses into a few short semesters.  I think it would be an amazing experience, I just want to be able to make it through!

This probably sounds horrible, but I wonder if putting myself into the highest stress situation possible would speed up the destruction of my thyroid so that it is clearly not working and I can begin treatment.  It's an interesting idea to toy with, especially since my doctors won't treat me.  But I'm getting a cortisol stimulation test on Tuesday (if insurance stuff is taken care of, if not it'll be next Tuesday) and either way I have a follow-up with my doctor and will probably get the results of my blood work at that point.  I'm not anticipating anything worthwhile coming from that, but we'll see.
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Avatar_m_tn
According to the recent article I read, the Hashimoto's patients with thyroid goiter [diffuse or diffuse with nodules] are less likely to have thyroid atrophy, then patients without marked thyroid enlargement.
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534785_tn?1329595808
Did you have an ultrasound of your thyroid done? I'm just wondering if maybe your thyroid is a symptom of a different issue, especially given your normal thyroid bloodwork. Do autoimmune diseases run in your family (i.e. do your parents, siblings, etc. have any autoimmune diseases, particularly any autoimmune thyroid diseases)? Muscle weakness, fatigue, joint pain, and a lot of the other symptoms you're experiencing could be attributed to many other systemic illnesses...your thyroid could just be a casualty of whatever it is you have. The thyroid antibody numbers would be useful to have, if you got those tested--if not, it'd be good to have those levels checked out.

Stressing your body would definitely speed up the destruction of your thyroid, but it will also speed up the destruction of a lot of other things, which may complicate the situation (hormones will go crazy, you could develop headaches, more fatigue or insomnia, heart arrhythmia, etc.). I wouldn't recommend it since there is no guarantee you'll target the thyroid or cause enough of a problem for it that it'll show up in the bloodwork.

Good luck with your post-baccalaureate coursework; I know how difficult those classes can be... Veterinary school is a great goal to aspire toward. Is a "classics" program the study of literature and its applications to language, mathematics, and the like? I haven't taken any humanities or social science classes in quite some time, so I'm not entirely sure what that means, but I'm interested to hear about it.
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653142_tn?1224804820
Yes I did have an ultrasound, she said I have classic Hashimoto's. It seems there is really no doubt with regards to the diagnosis, only as to whether my symptoms are caused by my thyroid or something else.

The classics program I am in is essentially a history of Western math, science, philosophy, and music with intense studies of ancient Greek and French.  We read everything from Homer, Plato, and Aristotle to Dante, Shakespeare, Tolstoy, Marx, Hegel, and Twain with stops in between at Augustine, Pascal, Descartes, Bacon, Hobbes, and Rousseau, to name a few.  Math and science are almost primarily original sources. In math we start with Euclid, we learn about algebra from Descartes, we learn calculus from Newton, and we learn non-Euclidean geometry from Lobachevsky.  In science, we learn biology from Gaelan, Harvey, and Dreisch, chemistry from Lavoisier, mechanics from Huygens, electromagnetism from Faraday and Maxwell, and atomic theory from Thomson, Einstein, Rutherford, Planck, and Bohr.   It's very interesting but a lot of thinking work, which is not very conducive to what is only a semi-functioning brain. Not that any schooling really is, but this kind of work is especially difficult.
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534785_tn?1329595808
An ultrasound won't tell you if you have Hashimoto's; it'll only tell you if your thyroid is exhibiting an appearance characteristic of a patient suffering from Hashimoto's. Typically, that means an enlarged thyroid with a heterogeneous echotexture. The thyroid antibodies, measured via bloodwork, are really the indicator for autoimmune thyroid disease. I asked about your familial history because autoimmune thyroid disease, like Hashimoto's, typically runs in the family (usually seen in women). If your antibodies aren't indicative of Hashimoto's and you don't have a family history of it, your ultrasound results would have to be interpreted differently--meaning you're likely suffering from a temporary bout of thyroiditis, which lasts a few weeks to several months, as a result of another disease afflicting your system. I wouldn't settle on this diagnosis if your bloodwork is normal (especially the antibodies). Because then, no amount of thyroid hormone is going to make you feel 100% better until you treat the underlying issue.

If you do have Hashiomoto's, it's likely you have another autoimmune disease that's causing some of the other problems. If it's not actually Hashimoto's, then you have something else, and may need to do a lot more bloodwork in order to figure it out. What have you been tested for? Lyme disease? Epstein-barr virus? It wouldn't hurt (besides the needles) to have a few more things tested while you're waiting for your thyroid to crash, if it ever does. You might also want to ask about getting an MRI of your head to look at your pituitary gland and hypothalamus; though, if you don't have fluctuating TSH levels, chances are your pituitary isn't the issue. I'm glad they're ordering an adrenal insufficiency test--it's definitely a smart thing to do.

The program you're in sounds rather interesting (especially coupled to your veterinary school aspirations), but I can understand why it would be difficult given your present condition, and past fatigue. Have you asked your doctor(s) what can be done about managing your symptoms until they get a handle on what's really going on? I'm not saying I think medication is the best way to treat things, but if this is only for a short period of time, and they don't seem to entirely know what's going on, there shouldn't be much harm in giving you an NSAID for your joint aches/pains and potentially trying out a drug like Provigil for your excessive daytime sleepiness.
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I tried Provigil, it was baaaaaaad.  I'm bipolar as well, stimulants are definitely not the way for me to go. I am on Neurontin for the pain, we've increased it a lot recently though.  When it comes to managing the fatigue, we've been looking for a way to do that for 11 years. I'm not optimistic that we'll find anything that will alleviate any of my symptoms.  I can't tolerate stimulates (caffeine or otherwise) in even tiny amounts.  I can't even drink anything that's decaf, I will still feel the caffeine.  Have to go with caffeine free, always.

I was unaware that the ultrasound wasn't a definitive diagnosis, my doctor sure sounded like it was.  She did find the classic heterogeneity and enlargement.  She came very highly recommended from another doctor so I'm reluctant to say she didn't know what she was talking about when she diagnosed me, or had an insufficient amount of information but it's always possible.  I assume my antibodies were tested, I'll ask my GP at my follow-up on Tuesday.  If they weren't, that's kind of weird.

As for family history, my family is incredibly tiny so it's a bit hard to say.  (We were kind of thinned out during WWII.)  I told my mother she should get tested, but she doesn't exhibit any symptoms at the moment.

There's some suspicion that I have Crohn's Disease as well.  Last spring, I got a horrible intestinal infection as the result of taking some antibiotics and needed to be hospitalized.  A colonoscopy showed ulcerations consistent with Crohn's, but with the seriousness of the infection it was difficult to be certain.  I took a 7-week course of powerful antibiotics and an anti-inflammatory medication.  A second colonoscopy looked clear so my GI doctor stopped the medication.  He told me he still suspected Crohn's but wanted to try taking me off the meds for awhile.  A few weeks later, right before classes started, I began having symptoms again.  I ended up needing another ER visit but since my doctor was convinced it was just a Crohn's flare-up, nothing more than a bit of blood work was done and I was doped up on an anti-emetic, which I learned last year during my illness will make me feel really tired and drugged for a solid 2 weeks, but I felt so awful I didn't care.  I still ended up missing my first day of classes three days later, I was up all night and completely dehydrated and depleted.  My doctor put me back on the anti-inflammatory and I started working with a nutritionist and my stomach seems to have settled a little.

Crohn's can also cause fatigue, but any doctor who is going to jump to that conclusion has to keep in mind that the fatigue preceded the (potential) Crohn's by 11 years.  That makes it a little unlikely that they're connected.

I feel like I have a million things wrong with me.  I wish it was just one thing, then it would be easier to diagnose and doctors would be less likely to throw the blame around.  
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Avatar_n_tn
Sounds like you need a good dose of preventative medicine... Naturopathic MD that is. I started going to one when I was 20, with the same symptoms you have.  You probably don't have time to cook quality meals, are you eating fast food alot?  Blood work can determine what vitamins you need to take.  Your Naturopathic MD can also test for toxic metals in your blood.  My tests showed variable levels of lead, nickel, aluminum, among others.  If your Thyroid tests were normal look elsewhere. Hypoglycemia was my problem.  Tired all the time, craved sweets, coffee all day, low concentration, blurred vision, weight gain, and diet soda (very bad for you!!)  Just make sure the Naturopath you choose is also a medical doctor so he/she can write prescriptions.
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534785_tn?1329595808
Hmmmm...thanks for the information. I have a midterm in a day I have to start studying for eventually, so I'll think about all of this and let you know if I come up with any worthwhile thoughts.

I did immediately think of vitamin levels--have you had your B12 level checked out recently? How about any of the other levels? I'd also be interested to hear about your blood counts--were any of them abnormal, by any chance?
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I don't think vitamins are the problem.  As I mentioned, I also have bipolar disorder and the medication I take for that (which is highly controversial, mostly because it's a threat to the drug companies to have something that works so well) is a multivitamin, but large amounts of it.  So, in every pill there are 60 mcg of B-12, for example, and I take 19-20 per day (depending on the time of year), which according to the daily value listed on the side, amounts to about 20,000%.  I can get those levels checked as well, but it seems unlikely that I need so much more B-12 than I'm already getting.  I'd really like to get a better look at my blood work, but I think my doctors assume that as a layperson, I can't possibly know what the results mean.  There was one thing that was low in the most recent test but I can't remember what it was.  My cold cortisol level was elevated, but that's meaningless without the stimulation test, which I will (I hope) have done tomorrow.

To Healthyforlife, NO WAY I never ever eat fast food.  I cook for myself nearly all the time...leafy greens, brown rice, fish, chicken, fruits, vegetables. Now that I'm on a gluten-free diet, I basically have to cook for myself all the time.  I've heard of other people following your route with getting all those levels checked with limited results, but it's an avenue to pursue.  Unfortunately, any medication or supplement I take will have to be cleared by my psychiatrist since subtle changes in some of those amounts could lead to destabilization.  I'm getting more thyroid tests done, and I think I will seek a second opinion, particularly if I can find a doctor who specializes with the thyroid.
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534785_tn?1329595808
You take large amounts of B complex vitamins? This could really be a problem, although it might not seem like one at first. If you take too much of a particular vitamin, it can cause an insufficiency with another one (analogous to competing species). Was your medication/vitamin regime designed and/or approved by a doctor? I'm guessing it was, but I'm checking, just in case, to be helpful since I know treating bipolar disorder with vitamins isn't standard procedure. Insufficiency of certain vitamins or too much of particular vitamins (especially if they're fat soluble, they hang around in your body until they're needed and you'll get a build-up) can wreak havoc on your system. Are your levels consistently monitored? I'd hope so, because believe it or not, overdosing on vitamins can be pretty dangerous for your system.

Your cortisol level being elevated is actually very useful. This strongly suggests an adrenal issue, likely a result of your body's response to stress, which can cause excessive weight loss in individuals, as well as mood changes or mood swings--like developing depression and then suddenly becoming irritable. Decreased motivation, loss of appetite, and loss of muscle are additional symptoms of elevated cortisol levels.

May I ask how your bipolar disorder was diagnosed? I wonder if maybe your cortisol levels are really to blame for your mood swings. If you think I sound crazy or something, just let me know and I'll stop with the interrogation and suggestions lol.....

I hope your cortisol test goes well tomorrow (assuming you're able to get it)!
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Ok it does seem necessary to get a few facts straight. They might be scattered about in other posts but let's get them all in one.

The bipolar disorder may not be helped by whatever is causing the fatigue, but trust me when I say that it is a diagnosis in and of itself.

I am under the care of an excellent psychiatrist, one of the top in his field, who I go to for just about everything, whether it's related to the bipolar disorder or not.  He's been working with these vitamin treatments for 15 years, he knows his stuff, I get yearly blood work specifically to monitor things that could be influenced by these medications.  I understand the dangers of over-vitamining (it's a new word!) but I trust this doctor implicitly.  If you're interested, I can tell you the story of how he came to use these nutrients, it's actually a pretty interesting story.  He was very incredulous at first, now he's the foremost specialist on their utilization (though how much that really says is unclear as so few doctors use such an intimidating alternative treatment.)

A lot of doctors like to pin the problems on the meds I take for the bipolar disorder.  My meds are NOT the problem, I am 100% certain of that.  The fatigue has preceded every one of my current medications by at least 7 years.

I maintain a far better diet and sleep schedule than the average person.  If diet is to blame, it would not be due to irresponsibility, it would be due to a subtle problem as yet undiscovered.  I also think it is highly unlikely that my sleep is to blame.  I know what good sleep feels like, even though I don't feel refreshed when I wake up.  Still, I find it unlikely that sleep alone is the problem.  

I'm still in the dark about what all my blood work showed, and a bit confused as to whether the diagnosis of Hashimoto's was premature, but if there is anything significant I will certainly mention it.

In short, the following things have been ruled out or nearly ruled out as causes for the fatigue:
Depression related to the bipolar disorder
The medications related to the bipolar disorder
Poor diet or sleep habits

My symptoms include:
Fatigue
Drowsiness
Waking up without feeling refreshed
Needing lots of sleep (typically 9-10 hours, but I've been known to sleep 13-14 hours for weeks in a row and not feel any more refreshed)
Pain in my lower back,  hips, thighs, and knees
Fogginess and a sense of slowness in my brain
Poor concentration
Difficulty with learning (a newer development, post-high school)

The brain symptoms are the most frustrating.  Whenever I sit down to do homework, I literally feel like I want to run an electric current through my brain to give it a jump start.  I've been known to hit myself on the forehead with my fist in the vain hope that jostling things around in there could get things moving again.  It doesn't work.  It's a fatigue I can literally feel, it's like my head is full of cotton.  If I try to focus for more than 20 or 30 minutes, my brain feels like it's expended every bit of energy it has and I just want to curl up and sleep for awhile.  I used to love reading, it was my favorite pastime.  Now I can't pick up a book and feel like I can make the mental commitment to reading it, even if it's by an author I love or a topic I'm really interested in.  I used to devour a new book every couple of days, this is a hugely drastic change for me.

Possibly related symptoms:
Sensitivity to cold, fluctuations in comfortable temperatures (my fingers and toes turn blue frequently, other times I feel overheated)
Sensitivity to many medications (my meds for the bipolar increase this, but I am very sensitive regardless)
Gastrointestinal symptoms, including nausea, pain, general stomach unrest, and some other unpleasant things
Anxiety
Depression

Depression is a weird one...I'm very sensitive to different kinds of depression: circumstantial, stress-related, chemical due to a problem with my medications, chemical due to interactions with other medications, and what I am experiencing right now which feels like a combination of stress and something else I can't quite pinpoint, it feels chemical but not bipolar-chemical, if that makes any sense.

Ok this is really rambling but I hope it clears up some questions.
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I haven't heard from my endocrinologist what her opinion is regarding the ACTH stimulation test but my primary care physician seemed to think the results were not significant.  My levels were initially 36 and they rose to 43.  I don't know what constitutes a normal test, so if anyone has any input that would be great.
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534785_tn?1329595808
In a normal test, your levels should double over the course of approximately one hour. Since you began with a level of 36, your level after the injection of ACTH should've been around 72. The fact that yours only rose 7 points in an hour (I'm assuming it was an hour) suggests that you have primary adrenal insufficiency (your base value of 36 less than doubled over the course of the 60 minutes), likely a result of your cortisol production having all-but-ceased over time. What is confusing about your results is that typically people with primary adrenal insufficiency begin with a cortisol level that is in the low-to-mid teens, like 10 or 15. You began with a 36. Was your test done early in the morning, or in the afternoon? Either way, I strongly recommend that you get an MRI of your pituitary gland done promptly, if you can. Your cortisol initial cortisol level was high and this might mean an ACTH-secreting pituitary tumor or another neoplasm in that region of your head. This would explain your thyroid going haywire, too.

I guess the bottom line is that from what I read, your ACTH stimulation test results aren't normal...and that means a problem with your adrenals or a problem with your pituitary. I'm inclined to think it's the pituitary since you're having thyroid/hormonal issues. Hope this helps...
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534785_tn?1329595808
Sorry, the second-to-last sentence in the first paragraph of my last post should read: "Your initial cortisol level was high....." I had one too many "cortisol"s in there!

By the way, if your doctors weren't surprised or worried by the results, then they might know something I don't know--like how the medications (vitamins, too) you're currently taking might affect the test. I didn't take that into account, so it's quite possible your results are normal for you, if even they don't seem normal, in general.
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One last thing, I promise--was this a urine or blood test? This would definitely affect how the results are interpreted.
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Sorry to get in on the end of this thread, but I couldn't refrain from putting in my two cents.  I always get concerned when I read that someone who has a possible thyroid problem is told by doctor that their test results were normal.  In the medical community normal covers an enormous area, subject to the particular lab that ran the tests and the doctor's knowledge and acceptance of the new range  for the primary test used for  diagnosis - TSH.   Did you see the actual test results?  If not, I would request a copy of the data and find out what tests were run that resulted in the decision of "normal".  Then considering the symptoms that you mentioned, I would also  do my own testing of body temperature.  If that interests an academic like yourself, then here is a good link.

http://www.drrind.com/scorecard.asp

Bring this info back to the forum and I'm sure you will get some very useful opinions and experiences that might relate.
P.S. Please start a new link as I am now totally fatigued myself, just reading through this one.   LOL

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The cortisol test was supposed to start at 8 am but we didn't actually start it until 8:45. I'm not sure if that's really all that significant (I'm not a morning person anyway, why do people think that everyone's pituitary gland should be tested at the same time?  Isn't it at all significant that I have a delayed circadian rhythm, which was diagnosed by a sleep specialist?)  Anyway, it was done through a blood test.  I also thought the increase seemed unusually low, but these tests I understand typically are used to diagnose the extremes (Addison's and Cushing's) and it can be complicated to diagnose any subtle issues in the middle.

I had an MRI done a few years ago that was normal, but I suppose things may have changed or become more pronounced since then.  But if everyone thinks things are normal, they're not going to let me get the MRI. I would like a second opinion though, I just hate having to wait 3 months to get into see a doctor. I am having trouble finding anything besides Wikipedia that gives me any information on what the "normal" results would entail.  Jules, have you come across any worthwhile information in that regard?

My stomach issues have worsened lately too.  I've been eating about two small meals a day, but almost never actually feel hungry. I've been dropping weight, I'm at the lowest weight I've been at since middle school (10 years ago). I'm nauseous and my stomach hurts all the time.  I have an appointment in about 4 weeks with my gastroenterologist, I might try to get in sooner if things don't start to feel better, but I doubt there's much he can do.

Gimel: Thank you for the link, it was very interesting.  According to the "scorecard" I'm leaning towards adrenal fatigue or mixed.  I don't know that I'll really be able to do the temperature tracking since my schedule is highly variable, but I do typically have a very low body temperature.  It's typically about 97.5 but it can get as low as the low 96s.  My hands and feet are always cold, my nailbeds often turn blue.  I also occasionally feel hypoglycemic, sometimes to the point where I'm so shaky I can hardly walk (though this is rare).  I was surprised that one of the symptoms of adrenal fatigue is to startle easily.  Strangely enough, I've noticed an increase in that recently as well.  Also, every time I go to my doctor he remarks on the bags under my eyes, another symptom they listed.  My old doctor used to remark on my pallid complexion, another symptom on there.  I also bruise easily, at the moment I look like I've been beaten up from the last two times I got blood work done.  I have two huge disgusting bruises.  One has been there for nearly two weeks.  I don't know if by "slow healing" it also implies cuts or scrapes, but even a small scratch might take weeks or even months to heal, and I scar easily.

It can be tricky to define the difference between a symptom and an idiosyncrasy.  My body temperature might run low, it might not be anything significant at all.

And I probably should start a new link, but all the important info is on this one already.  I probably will pretty soon though, maybe once I have a little more information from my doctors.
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Avatar_m_tn
Low body temperature is definitely significant.  Also, how about following through on my other suggestions regarding finding out the actual test results and supplementing with other tests, as required.   Also, here is another site that might be of interest.   Keep giving us info and we'll probably give you more info/suggestions than you even want.  LOL   But there is no way you should have to be going through all that.  

http://www.altsupportthyroid.org/tsh/tshmedrefs1.php
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Oh yeah I forgot to address that. I did look through my test results, there were a couple of things of questionable significance.  The first is that my carbon dioxide was one point below normal.  My doctor didn't think anything of it but I feel like I've seen things about it in reference to the adrenal insufficiency. Secondly, there was a test in which my thyroid levels were very slightly elevated (by maybe a point) but I was told that wasn't at all significant because it wasn't the "right kind" of thyroid test to be significant (so why do they do it?!).  There was a certain antibody whose name I did not recognize at all which was within normal range but seemed to be "borderline borderline".  In other words, normal was 120.  Mine was 97. Maybe it means nothing, but I don't know.

The only other thing that I thought was significant was that my white cell count was actually normal in my last round of blood work.  My white cell count has been consistently elevated for at least 8 years or so.  It's typically 12-13, this time it was 9.6.  Strange that this normal test should seem odd to me, but when something is consistently abnormal it makes you wonder what it means when it's suddenly normal.

I've not mentioned this before, but I do have one other symptom which may or may not be relevant to everything else.  I have a consistently inflamed bladder/urethra.  I feel like I have to pee constantly, I get up 3-6 times a night, I pee about 15 or more times a day, I've had more times that I've felt dangerously close to an accident than any adult should.  There was a time recently when I was stuck in traffic, it hadn't even been an hour since we'd left (and I had peed immediately before leaving, as I always do), but I had to go so bad it was actually making me nauseous.  This has happened more times than I care to admit.  It feels utterly unrelated to everything else, but I figure it's worth mentioning just in case a light bulb suddenly went off in someone's head and they said, "Ah, now it all makes sense! I know exactly what's wrong with you!"  I doubt that will happen, but better safe than sorry.

My fingernails are blue right now. It's not even that cold, I know that objectively, but I'm freezing.
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Ok a whole line got erased in my post, that's what I get for not proofreading...In the part that says "normal was 120", it should read "normal was 120.  Mine was 97."
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Why can't you edit posts!!!!  Apparently there's a problem with coding.  I will not use greater or less than signs in this one then...I was blaming my cat who loves to walk on my keyboard for erasing that line, but it was probably just some screwy html thing.

It SHOULD read "normal was LESS THAN 99, borderline was between 100 and 120, and positive was GREATER THAN 120.  Mine was 97."

There we go.
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534785_tn?1329595808
Blue nailbeds suggests a cardiac issue...the CO2 levels being abnormal is definitely important...and the urge the urinate (especially if it is independent of any actual bladder inflammation--was this measured or noted on a CT scan or something?) would indicate a neurological problem. If your bladder really does swell more often than it should, that could be musculoskeletal in nature, or potentially even some type of vasculitis. Have you ever had your Erythrocyte Sedimentation Rate (ESR) measured? This is good for measuring, in general, whether or not there is significant or systemic inflammation occurring in your body--just another generally useful number.

I'll get you a website or two regarding your cortisol results, because I've definitely found some in the past...but if your level started out at 36 and didn't increase much within the hour, I would definitely say that's an issue. It looks like primary adrenal insufficiency, but if you have TSH values that are out of whack, it's likely to be your pituitary.

Elevated white blood cell count would suggest infection...over several years though...did your doctors ever think this was strange, and order further tests?

I'll think about all your symptoms/test results and get back to you with any ideas. The information is very helpful! The value of 97 that you speak of is probably not signifcant. I'm trying to think what it could be...maybe one of the cholesterol levels? Or one of the ions (like potassium).
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Avatar_f_tn
I just found this site again and read your posts. My old computer crashed and I lost everything.   I just have to comment, of course.  I was finally diagnosed in 1963 with Hashimotos.  I was diagnosed by biopsy in Chicago by a Dr. that flew in.  I was young then and remember most but not all.  I had radiation treatment, I believe also after but not sure.  I was mostly stable until I hit 40, now I guess hormones kicked in and I can not get stable in my tests.  I am now on Synthyroid 300mcg, up from 275mcg.  Their site offers great info and coupons. I have symptoms still as you though and can not seem to get "normal" lately.  Unfortuneately, I have gained 50 lbs since going on the Effexor XR and am not happy about it.
It's great you are eating well and on gluten-free. Celiac disease runs in my family and Gluten-free is what you have to be to be without the digestive trouble.   http://digestive.niddk.nih.gov/
I too am bipolar, have colitis, nerve damage,and am highly hyper most of the time, or completely drained to the point I can not get up for days.   I take meds for ADHD but not sure if they work well.  The amphtamine type worked better but made me feel too drugged.  I have a few other things but I am not writing to talk about myself now.  Don't know if you know that you have an autoimmune disease or not.  I am a member of that society and have found out the thyroid goes hand in hand with the others many times.  I've done extensive research on the thyroid disease and think it is the root of my other problems.  Check out the Mayo Clinic site, it has alot of great info. and up to date testing suggestions.  I also would try to find a good Endocrinologist that specializes in your diagnoses.  I think Synthyroid is the best, the generics are just not the same and made from different things.  One is from Sheep hormone, one is man made, and one other is from something else. I wouldn't mess with high levels of B-12.  It could be toxic to you, I believe.  Some is good, too much I'd be leary.
One thing I do know from experience is don't EVER stop taking the meds.  I did 30 years ago when I was pregnant due to some quack saying I didn't need them, and I was barely coherent and on the verge of coma by the time I was treated by a specialist.  I've never met anyone with the disease who's had it longer than I, so, I guess I was one of the first ones.  I was about 6 or 7 only.  But now I go every 3 months for blood work and have completely changed my diet. 1200 mg of salt sodium a day was the hardest, I think but now am used to herbs and spices instead.  
Good luck to you with your battle.  I hope you are feeling better soon.  Also, try to find a DMDA group( I think they changed the name) for the bipolar.  It helped me alot knowing I was not crazy, and not alone.
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Thank you both for the advice.  Jules, the 97 value was of some antibody, but I didn't recognize which one.  I thought it was maybe the one associated with Hashimoto's.  The bladder inflammation was looked at briefly with an ultrasound by a urologist that I really didn't gibe with. He recommended a weird over the counter medication I'd never heard of and the way he told me to try it, it felt like he had to be getting kickbacks from the company.  I did try it, but soon after I started to have a flare-up of whatever my GI problem is.  I don't think they were related, but I don't want to risk it.  I'd like to see another doctor about it.  My GP suggested an interstitial cystitis but didn't offer any suggestions to either confirm the diagnosis or treat it. My GP also thinks I have something called neurally mediated hypotension, I'm gonna try andget into see a cardiologist and get a tilt table to confirm that because it could explain my symptoms as well, it's just really tricky to treat.

I'm not sure if my sed rates have been tested, but they probably were and looked normal, I think I remember seeing them.  As for the elevated white count, what do you do if I don't have any distinct symptoms but my white count is high?  Doctors noted it but it was never high enough for them to be particularly concerned.  They usually just asked if I'd been sick lately and even if I said no they just shrugged it off.  I began to just assume my white count was naturally high (which maybe it is).  I did have mono a couple of years ago (long after the high white count started, by about 6 years), but I didn't notice an increase in fatigue after, like the infection never cleared or something.  It's a route I'm also just really afraid to go down because there is very little you can do for a virus that won't clear your system.  I do probably carry it, my boyfriend came down with it about six weeks to the day after we started dating.  But things were going really downhill even before I got it, the fatigue that accompanied it was hardly the worst I'd ever had.

The fatigue did actually get worse back in high school when I took up gymnastics again and landed on my head trying to do a back flip.  (The spotter thought I had it.) It was a subtle change, more weakness than anything, but I did notice it.  I put it together later when I had a brain-scan done and they said it looked like I'd had an injury.  I tried some treatments called neurofeedback, which were utterly ineffective.  Though the brain scans did show what I've been feeling: a lot more slow waves that are associated with sleep, a lot more fast waves associated with anxiety, and a lot less middle waves associated with concentration and focus.

As for the bipolar, it's under good control.  I don't think I'm crazy.  I accept that I have it and even see it as an advantage in some ways.  I experience life more intensely than most people, it helps me be creative.  I appreciate the suggestion for joining a support group for it, but the few I've looked at just depress me.  I have plenty of support.  My brother is also bipolar, and my mother has been with me through the treatment so closely that there isn't the usual divide between those who are bipolar and those who are not.  My boyfriend is learning.  (Actually, if there's anyone who needs the support group, it's probably him.  He needs to see how good he has it that he has a girlfriend who takes care of her meds, never stops them carelessly, doesn't get psychotic, takes care of her mental and emotional needs, and recognizes when she's suffering from irrationality associated with instability! I started therapy at the age of 9 and I wasn't diagnosed until I was 17.  The therapy was at times extremely intense, and given the improper medication I was being spoon-fed, it was the only thing that let me regain any functionality.  I am extremely self-aware.  Not much in my psyche slips by unnoticed.)
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I'm getting lost in all these posts.  What thyroid test was run?  What was the actual result?  Don't ever accept from a doctor that it was "normal". Always get a copy of the results.  By the way, are you aware of the relationship between thyroid problems and bipolar disorder?  If interested, check this link.
http://www.psycheducation.org/thyroid/introduction.htm

Have you started on any thyroid med. yet?  If not, why not?
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I first had an ultrasound.  The doctor saw what she claimed was "classic Hashimoto's", though I am questioning that diagnosis based on the blood work.  I don't have the exact numbers, but my thyroid levels were basically all mid-range normal.  Like, I think the T4 was something like 3.2, when normal is .5 - 5.  I'll ask my doctor to give me the test results so I can bring them to new doctors.

I haven't started any thyroid meds. I had one thyroid level that was closer to hyper- rather than hypothyroidism, but still well within the range of normal.  If my thyroid is fluctuating a lot (which is possible) it seems a bit risky to give me more of a hormone I potentially have too much of.  I mean, how do you treat a fluctuating thyroid without taking it out or otherwise disabling it?  I think I'd like more information about what exactly is going on with my thyroid before I start treatment.

I wasn't aware of the relationship between thyroid and bipolar, I'll check out the link, thank you.
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That result of 3.2 sounds like TSH, rather than T4, since you gave a range of .5-5.0.  By the way, that is the old range for TSH.  About 7 years ago, the Amer. Assn. of Clinical Endocrinologists decided that based on actual data, that a more correct range would be .3-3.0, which would place your result in the hypo area.  Unfortunately it seems that very few labs and doctors have even adopted the new range.  In addition, with your other symptoms and your temperature, I would confidently make a bet that you are hypo, and the sooner you find a doctor that recognizes that and prescribes meds. that you need, the faster you will get better.  Since you are in the process of finding another doctor, I suggest that you try to find one that does not determine dosage by testing TSH level only.  In my opinion you also need free T4 and free T3, along with your symptoms and body temperature, in order to make good decisions.
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I did get free T3 and T4, they looked very middle of the range normal, but I really don't remember what the numbers were.  I want to say that the TSH was lower, actually more around 1.5, so again very middle of the range.  I should hear from my endo about the ACTH stim test tomorrow, maybe she will have something to offer.  My GP is willing to put me on a small dose of thyroid medication, but I think I'd like a better idea of whether this is really due to my thyroid or something else.  I'm also going to get a tilt table (eventually, gotta actually remember to call the cardiologist) as well as some allergy testing.  I will also call my GP tomorrow and ask if I could get a copy of my blood work so I can show it to other doctors (and give people on here more details, but I won't tell him that because he seems to believe every bit of information on the internet is bogus).
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I also have "normal" TSH levels of 3.8.  But have every single symptom of Hypo.  I also had RAI for a nodule/hyperthyroidism 16 years ago.  My paternal grandmother was hypo as well.  Yet it literally took years for my doctor to even TRY synthroid-which I just started today.  

Read "The Thyroid Solution".  Every page was a "lightbulb moment" for me.

Take care and best wishes.
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I'm not usually one to quote Wikipedia as a good source, but they do a good job of summarizing the cortisol stimulation test, as well as what the results should be:

http://en.wikipedia.org/wiki/ACTH_stimulation_test

Let me know if you need another website, because I found a few others. Wikipedia just does a great job describing it concisely.

How've you been doing lately? Any new symptoms or clinical breakthroughs?
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Ugh, I've been doing absolutely horrible.  There's some tension with me and my boyfriend right now, and a few other things that are making me feel incredibly stressed out, and as a result I've been feeling depressed, anxious, and overwhelmed.  The night before last I woke up every half hour with my heart pounding most of the night, and last night I woke up with a full-blown panic attack after only two hours of sleep, which kept me up for close to 3 hours.  I feel like I'm in a state of crisis and something has to be done quickly or else I'm worried about my ability to continue school right now. Hell, I'm worried about my ability to function at all.  I can barely eat, I've been losing weight, I'm nauseous all the time, the pain in my lower back, hips, thighs, and knees is overwhelming, I can't concentrate or study, I always feel out of breath from anxiety, and the depression just further exacerbates the fatigue.  I feel like I'm in a downward spiral but no matter what I do, it keeps getting worse.  I feel completely lost, I don't know what to do next.  And I don't think my symptoms are strictly anxiety/depression-related.  The fatigue still overwhelms me even when I feel quite stable psychologically, and it's unusual for me to experience this level of mood instability without a clear meds-related cause.  Maybe it is just anxiety and depression, but they probably exacerbate whatever is causing the fatigue, I don't think they alone are the culprit.

I found this online: "during a thyroiditis attack, common symptoms are anxiety, panic attacks, heart palpitations, swelling in the thyroid area, problems swallowing, and frequently, problems sleeping."  I've had terrible anxiety and panic attacks for a long time, but it wasn't until within the past year that I've actually woken up in the middle of the night with a full-blown panic attack.  I'd occasionally wake up anxious if I was particularly stressed, but that's different than waking up with your heart about to pound its way out of your chest, your stomach clenched up and needing a trip or two (or several) to the bathroom, intense overwhelming nausea, shortness of breath...to have it happen so out of nowhere like that feels like more than just my psyche telling me there's stuff I need to think about (though I know that's part of it).  I didn't have problems swallowing, but the nausea was "located" it felt right around my sternal notch (that small indentation above your ribcage), which is around the area of the thyroid.  And this type of nausea, feeling so localized in this area, started within the past year as well, right around the time I was coming down with the bacterial infection that put me in the hospital last spring.  Maybe it's just coincidence, but if something seems even remotely significant, I figure it's worth mentioning.  You never know what seemingly benign or irrelevant symptom will cause the "a ha!" moment for someone else.

And yes, links to other sites that describe the cortisol test would be great, wiki is the only site I've found which gives me any details whatsoever.
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Some good websites explaining the cortisol stimulation test and what the results mean:

http://labtestsonline.org/understanding/analytes/cortisol/test.html

http://www.drugs.com/enc/acth-cortrosyn-stimulation-test.html

http://www.wardelab.com/Appendix09_ACTHa.pdf

http://organizedwisdom.com/ACTH_Stimulation_Test

http://www.ucsfhealth.org/adult/adam/data/003696.html

Sorry it took me awhile to get back to you; the past two weeks I've had midterms, so I've been swamped with work. I hope you're doing better by now, but I'm sorry to hear you felt really sick. It could be thyroiditis (likely not thyroid storm) caused by whatever underlying illness it is that you have. Any new symptoms, or are you still feeling pretty much the same?
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Jules - My endo says the cortisol test I had was definitely normal.  I asked about the Hashimoto's diagnosis and the nurse I spoke to (since so few doctors actually speak to you directly) said that my endo still thinks I have it.  I asked about the normal tests, including the normal antibodies and she seemed very insistent that my doctor, who is apparently a thyroid specialist, believes that I have Hashimoto's based on just the look of the gland.  I'm getting a second opinion though, from a thyroid specialist at Johns Hopkins.  We'll see what he has to say.

The anxiety is a little better, but I think I might have what seems to be a classic hypothyroid symptom.  I'm not positive, but it looks to me like I might be losing the hair on the outer portion of my eyebrows.  I'd noticed that some of them were sticking out in a way they never have before, and it really feels to me that the outer third of the length of my left eyebrow in particular is becoming more sparse.  It's one of those things that's too subtle to be really certain of though, I keep looking at them closely but if you don't spend a lot of time staring at your eyebrows it's hard to notice if they're changing.

My psychiatrist believes a substantial portion of the fatigue is caused by my anxiety issues.  He is not suggesting I stop looking for a physical cause, just that we tackle the anxiety a bit more head on.  I'm fine with that, I hate having such a severe anxiety problem.  But I know from experience that it isn't such a good idea to chock up physical symptoms to something psychological and leave it at that.  Last year, I remember saying several times that I was concerned that my stomach pain and loss of libido could be indicative of a problem in my relationship with my boyfriend but I wasn't sure how much was physical and how much was psychological. It turned out to be 100% physical, that was the beginning of the infection which put me in the hospital last spring.  At least exploring the causes of my anxiety and learning how to cope better isn't going to be wasted, whether it's contributing to my fatigue or not.  It's not like I'll be working on a problem that isn't there.

I don't think I should start any thyroid treatment before I see this specialist, I don't want to cloud any symptoms he'd be able to pick up on.  Hopkins is an excellent hospital though, my hope is whoever I see there has something more to offer.

It always amazes me how little doctors look at the patient and how caught up they are in just the labs.  If the numbers look okay, you must be crazy if you still have symptoms.  It's really depressing, I want to believe that most doctors know how to think outside the box.  But even the ones who say they can't help me almost never have any advice about what I should be pursuing next.
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