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Old 11-16-2009, 09:47 AM   #1
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Need advice. TSH "normal" but feel awful.

Hi everyone. I'm 27 years old and I've been having health issues since my early twenties. It started with brain fog, fatigue, major anxiety, depression, recurrent sinus infections & colds and along with that came intermittent vertigo. I've always been very motivated and career oriented but as the years have gone on, my mental clarity has decreased, I've gained 70 pounds, I have burning joint pain, stiff joints in the morning, my skin and hair are incredibly dry, my memory SUCKS...I could go on and on. I literally can't remember what I was doing 5 minutes ago. Oh and my temperature is consistently 96.7 (or around there).

Two years ago, I was on birth control and I started feeling really crappy on that. I didn't put it together at the time, but I was having joint pain, fatigue, awful brain fog and all kinds of weird neurological symptoms (numbness, tingling, etc.). I went off the BC and started feeling a lot better but had a full blood workup anyway. My TSH then was .77. Right after that blood test, I lost 75 pounds in a matter of 5-6 months. Of course, I've gained it all back and then some.

These symptoms have interfered with my life so much and I don't want to live anymore. I have a 6 month old son and things have only gotten worse in the last couple of months. I have bone-crushing fatigue sometimes. I just *have* to lay down and sleep and it's almost impossible to do with that with a baby. I can't concentrate worth crap. I can't do NORMAL stuff that I used to be able to do.

I went to my doctor on Friday and she said my neck looked swollen. She couldn't really feel anything but she ran some tests anyway. The medical assistants seemed to think it looked swollen too but I'll be honest, I really think I just have a big neck. LOL. Anyway, I just called to get my results and they said they're in normal range. My TSH was .59 (that's on the low end, right?). ***?

I've literally just been sitting here sobbing because I so badly wanted to have an answer to these problems...I thought I would be hypothyroid because two of my cousins were post-partum, I've gained MORE weight since having my baby and I've been eating decently healthy but I just feel miserable. I have to get a job and get my life going again but I have NO energy, no motivation and my ability to think clearly is gone. I can't remember words or seem to speak as clearly as I used to.

The fluctuations in my weight have been just insane as well. I remember I gained 25 pounds in a month and a half once. How!?! I don't know what's wrong with me. I don't know what to do. I don't have anyone to offer me some guidance. I'm just sick and tired of feeling this way. I can't do it when I have a baby. I just can't. I need to get better somehow. Does anyone have any thoughts on this?? I'm so worried that I might have MS or something deadly. I apologize, I'm in a bad state of mind right now and really needed to get this out. I don't know what to think.

Last edited by MissBecky82; 11-16-2009 at 09:53 AM.

 
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Old 11-16-2009, 10:01 AM   #2
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Re: Need advice. TSH "normal" but feel awful.

Ask to have FT4, FT3 and thyroid antibodies checked. Usually a TSH in the low end of the range would indicate HyperT but without those free T's it's hard to be sure.

Last edited by FinnMaid; 11-16-2009 at 10:31 PM.

 
Old 11-16-2009, 12:11 PM   #3
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Re: Need advice. TSH "normal" but feel awful.

Thank you, Finn! I meet with my doctor again on Wednesday. Do my symptoms and results sound possibly indicative of a thyroid disorder? Should I contact a specialist? I will definitely be sure to ask her for further testing. I refuse to spend the rest of my life feeling like this. I basically can't LIVE life this way. Especially with a baby.

 
Old 11-16-2009, 12:52 PM   #4
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Re: Need advice. TSH "normal" but feel awful.

You definitely need to get the testing FinnMaid recommends, I'd ask for all the antibody tests: TPO, TG and TSI just to make sure you're covered. I'd also ask to have ferritin, vitamin D and B12 levels done as well.

Your symptoms sound like thyroid or endocrine in nature. Finding a doctor who can accurately diagnose and treat is a challenge for many of us as most will only look at the TSH and ignore all the rest of your symptoms or decide you need antidepressants instead. Unfortunately specialists aren't always the best either. See if your regular doc will order these tests and see where it goes from there.

 
Old 11-16-2009, 01:35 PM   #5
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Re: Need advice. TSH "normal" but feel awful.

You are all so helpful!! I just feel very HYPO, not HYPER. Although I do have night sweats and random hot flashes. It's all so strange. Especially considering that I'm 227 lbs when I was 150 a year ago (yeah, I had a baby, but STILL! I gained 50 pounds from April until October and I had my baby in MAY). Anyway, any advice on how to approach my doctor about this? I tend to be a bit a of a hypochondriac so she sometimes takes my ideas with a grain of salt. I have grown up a lot since I first started seeing her in my late teens (I wouldn't even GET blood tests in the beginning! I was too scared), and I want to calmly find a way to convince her to take me seriously.

 
Old 11-16-2009, 01:41 PM   #6
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Re: Need advice. TSH "normal" but feel awful.

I think you should also request that your MD order a thyroid ultrasound in addition to the blood work.

 
Old 11-16-2009, 01:59 PM   #7
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Re: Need advice. TSH "normal" but feel awful.

Do just that, calmly ask her if she will order some labs that you think might be helpful to see if your thyroid might be out of whack. If she says no then just move on and find another doc who is more open-minded or you can order the labs yourself online.

I will also say that it usually doesn't help to tell most doctors that you've gotten your information online. Since there is such a vast amount of information and misinformation floating around in cyberspace, many docs just assume that we are unable to discern between the two. Especially if we are asking them to do things that aren't strictly adhearing to clinical guidelines.

Unfortunately most of what I've found that works insofar as diagnosis and treatment for thyroid disease falls outside the normal medical clinical guidelines, hence why I went undiagnosed for over 15 years. For a certain percentage of us, current clinical guidelines leave us hypo and only getting sicker. There are docs who understand this however and the challenge is finding one who will listen to your symptoms and work with you.

 
Old 11-16-2009, 05:24 PM   #8
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Re: Need advice. TSH "normal" but feel awful.

Thinking outside the box here, you might also want to rule out polycystic ovarian syndrome as well as depression. You might have several things going on all at once. Hope things start to look up for you. Best wishes, Lisa

 
Old 11-17-2009, 01:21 PM   #9
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Re: Need advice. TSH "normal" but feel awful.

Thank you all. I'm trying to gather as much info as possible before I speak with my doctor. She does know that I do a lot of Googling but I don't think that she thinks I'm completely stupid. So hopefully all goes well. I have to be persistent about this and find out what's wrong with me. Is it possible I could be hypothyroid but still have such a low TSH level? Weird. It also does not seem to run in my family. Two of my cousins have hypo-t but I'm not sure if they inherited it from their father's side. (They're sisters.)

CaliGirl - I definitely have always had depression issues and have been on Zoloft for several years now. However, I don't think that's the cause of my symptoms. Persistent brain fog, extreme debilitating fatigue at times, joint pain, stiff joints, memory loss, so many things. As far as PCOS goes, I don't have many of those symptoms either. (I really am a hypochondriac and have researched a ton of diseases! LOL!) My periods have always been regular (though heavy and heavier now that I have the copper IUD), I have been pregnant twice (only carried one child to term though), and I've had a c-section and lots of ultrasounds. Would they have detected any cysts on my ovaries that way? I also don't have abnormal hair growth. Who knows though. I'm not giving up until they figure out what's wrong!

I am really just very curious if this could be thyroid related or something completely different.

Last edited by MissBecky82; 11-17-2009 at 01:27 PM.

 
Old 11-17-2009, 03:59 PM   #10
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Talking Re: Need advice. TSH "normal" but feel awful.

Hi, stumbled upon your question, I do have a slow thyriod function, anxiety disorder, at times swelling of the neck, chronic fatigue and pain. Have searched for answers for years. I asked my doctors to run every kind of blood work that could cause these symtoms. I was sent to reumitologist and on my second visit (2 years apart)diagniosed with fibromyalgia. Keep on looking and don't give up, you may want to look under fibro on here and see how it compares to your symptoms. Hope you find the help you need soon. Kay

 
Old 11-17-2009, 04:00 PM   #11
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Re: Need advice. TSH "normal" but feel awful.

Hi MissBecky,

I saw you mentioned having a copper IUD and heavy periods. I recently got a copper IUD and my iron status dropped severely pretty quickly thereafter. Along with the ferritin test that was mentioned, you might ask for a complete iron profile. A lot of docs will try to do a CBC and call it good, but you really need ferritin, serum iron, and iron saturation to get a good representation of your iron status. My levels for each of those tests halved after I got the IUD! I'm thinking about asking my doctor for a trial of Lysteda. It was just approved by the FDA and can apparently reduce menses related blood loss by 50%.

It sounds like you have some non-iron related as well, but if you are low on iron it could explain the degree of your fatigue at least. Good luck!

 
Old 11-19-2009, 03:23 PM   #12
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Re: Need advice. TSH "normal" but feel awful.

Hi all. Thanks for your helpful replies. I went back to the doctor today and asked for more blood work. She was honest with me and thought it was all psych related. I told her that she has been seeing me for years and yes, I have anxiety issues, but these symptoms are making it worse. I have went to counseling, anxiety classes and am on antidepressants. I feel a lot calmer than I used to. I really don't buy into the "it's all in your head" diagnosis.

Anyway, she told me she'd test me again anyway. I asked for the T3 and Thyroid Antibodies test but she said..."your TSH is normal...you don't need it." I also asked her about the Ferritin test but she said that I don't need that either because my iron is only slightly low. Here is what she tested me for today:

ANA
Rheumatoid Factor
Electrolyte Panel
Vitamin D Hydoxy 25
Creatinine
Glucose
T4 Free
BUN
SED Rate

I took many of these other tests two years ago and they came back normal so she thought I was a bit off my rocker for wanting them again. I told her that I AM NOT feeling normal for a 27 year old. I KNOW myself. I said, "What about these extreme exhaustion that I get and I absolutely HAVE to lay down and I have really bad joint pain and stiffness?" Answer:, "Depression"

Anyway, I wasn't surprised but I'm starting to wonder if maybe she's right. Maybe it really IS all in my head. Maybe I have MS (my joint pain is like nerve pain). I don't know. I don't know anymore. I just want to be a good mom for my son, go back to school, go back to work and not feel like I'm dying. Not feel brain fogged. Not gain weight in excessive amounts in a short amount of time. Anyway, sorry for rambling.

 
Old 11-19-2009, 05:01 PM   #13
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Re: Need advice. TSH "normal" but feel awful.

Sorry but I'll be blunt here: your doc is a jerk. To disregard the patient is very common and sometimes I think they take special classes in medical school to get the art down so well. She's definitely good at it and has you doubting yourself just as she was intending. It's because of doctors like this that the pharmaceutical companies are making billions on antidepressants, statins and pain medications.

If it were me I'd go looking for another doc and get the proper thyroid testing done. Without it you will never know what's going on. It's FAR, FAR more common to have hypothyroidism with a "normal" TSH than to have Lupus or RA, which she is testing you for. And when those tests come back normal she'll just tell you, "See, it's all in your head". Also, if you iron levels are low it's almost a given that you're low in ferritin. Is she at least having you suppliment your iron?

Please do keep looking for someone who will do as you ask and properly test your thyroid.

 
Old 11-23-2009, 11:30 AM   #14
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Re: Need advice. TSH "normal" but feel awful.

I agree that she is a jerk. It really pisses me off. I did get my blood work results back today but do not have the copies yet. All I know at this moment is that my T4 Free result was .69 and my Vitamin D was low at 11. She is writing me a prescription for the Vit D. I haven't had a chance to research these numbers yet but if anyone has any thoughts, they would be greatly appreciated. After I pick up the copy of my blood work, I plan on researching those numbers then looking into a different doctor. My symptoms are NOT all in my head.

 
Old 11-23-2009, 11:35 AM   #15
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Re: Need advice. TSH "normal" but feel awful.

If that script for vitamin D is for the 50,000 iu of D2 I'd pass on it. Stick with the D3 as it's more bioidentical and the D2 prescriptions are, IMHO, a drug company rip-off. You can buy your own D3 at any healthfood store, pharmacy or places like Costco. With your low, low levels you should be taking 10,000 iu a day and retest in several months.

Let us know what your Free T4 ranges are when you get them.

 
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