I saw your post on the anxiety board. I don't know if you remember my story but it is on here somewhere. I finally saw a new doctor who I have been told is so smart and knowledgable. I dropped off my journal days before my first appt. so I wouldnt have to take 2 hrs in the office trying to explain my story (like they would let you anyway)! I'm not sure he read it. He looked at the list of symptom I had at the bottom and right away said 99% of the time its anxiety. He gave me Paxil to take if my blood work came back normal, whick of course it did. 3 weeks after taking it I had the worst attack ever. Of course they say "the medication wouldnt do that to you!" BULL!!!!! I never had an attack that bad except for when they tried to give me prozac. I stopped the paxil and feel better each day. This definitly follows a pattern. I don't understand how they can think a medication that alters your brain chemistry could not have these effects if maybe its not your brain chemistry that is the problem!! Anyway, because of the severe attack, he thinks I need a psychiatrist to work with me. I almost welcome it. My mother-in-law thinks it will be good because she thinks he will be able to determine that it is not in my head and that something physical is wrong. I told my new doctor that I read (never said on the internet)that just because the blood work shows normal for thyroid doesn't mean its normal for me. He said "I don't know where you read that but throw it out!" I am getting so fed up!!
Yes, I saw your post and had to respond!
I am wondering what kind of doctor that is. Was he an endocrinologist?
The chief of staff of endocrinology at a Houston Texas hospital, Dr. Arem, who wrote The Thyroid Solution, says the test does not tell the level YOU need to be healthy.
Hormone levels are always discovered by trial and symptoms.
Now, MAYBE you are not hypo, OK?
But I have seen medical doctors, even endocrinologists, over and over, go by tests and later on the patient manages to get treated with thyroid med (hormone) and is helped!
Right now, I am on a trial of Armour Thyroid, the natural med, because my current doctor noticed that although my thyroid tests showed that I was almost hyper (according to the tests), my pulse was low, my heart rate normal, I was cold, and I LOOK hypo (puffy in the face). All hypo symptoms!
The problem here, is even when a doctor lets one try the natural med, they often undermedicate, again, because they don't understand it. Since I began the new med, my pulse went lower than ever(64), and I am not a fit athlete. So, I probably need a dose increase trial, which I will ask for at my next appt., Jan. 2nd.
The thing about the TSH protocol, is that it was figured according to only 300 patients' scores, and then they did not even account for which ones had symptoms and which did not. So, you can see how limited that TSH test is! It will tell blood level of hormone and that is it.
Psychiatrists will not let you out of there with an OK diagnosis...everyone has some issues and any of them can be blamed, and I quarantee you if you submit to that, it will not get you a clean bill of mental health to determine the problems you have are physical.
For one thing the medical profession thinks that most illness is psychically induced anyway! I bet you didn't know that.
I know this is the pits! But there are some knowledgeable doctors out there. If I have to, I will pay out of pocket to see an anti-aging physician that won't take insurance because they don't allow doctors to treat correctly, many times. I have a friend who is hypo that lost her great doctor, because he left the practice' he was so mad at being constrained by insurance companies. He now works in the Veteren's medical field.
I finally was DXed as hypo, and have been shown to be helped with thyroid med. So, if this doctor I have now is afraid to treat me adequately, I will move on. I also have Hepatitis C, and that doc told me that every hep c patient he has is hypo, as well.
But my former endo had no knowlege of this. So, you see, medicine is NOT an exact science. They are just practicing, and many simply do not know enough to deal with hormones, because hormones are one of the least scientific issues we have to deal with. It simply is not black and white.
Don't give up, girl! TF
<p>[This message has been edited by Tree Frog (edited 12-19-2001).]
The doctor is in internal medicine. He is my new Primary doctor. It seems like a double edged sword. You're damned if you do and your damned if you don't. Go to the doctors and get frustrated over the run around and lack of care, concern, and treatment or don't go and try to deal with the unbareable symptoms.
I would not go to an internal medicine specialist for endocrinology needs. If he won't give you a referral to an endo, then you may have to change doctors again.
And or medical groups. I have done so many times.
It is worth it.
Don't give up! There are ways to deal with this.
Yes, it is a shame, that we have to work so hard to get the care we need, pay for, and deserve. Unfortunately, it is true that men docs listen to men patients much more than female ones, too. Many docs will not admit they are not up on thyroid. My PC openly admits he doesn't know enough about it.
One thing you need to do is go to the Information Archive on this board and print out the symptom checklist, and stick with that.
Using a log of symptoms and when they began, etc, does not speak to the problem directly enough. You have to point the doctor's mind in that direction FOR him. Ladies in particular may try to communicate too vaguely, expecting a doctor to put it all together. But, they don't have time to sort through our long lists, and hormonal problems are not scientific enough for most docs to understand how to deal with them or to recognize them, unless tests indicate an extreme problem.
So-called borderline cases can make one extremely ill, but not seem worth dealing with, if looked at only according to the tests.
If your symptoms match the hypothyroid checklist, take that in or write a short letter with a copy of the checklist, and tell the doctor you want it added to your records. You could explain that your log seems to have have given a false impression of what is wrong with you. That you want a referral to an endocrinologist now, for another opinion. If he resists, then there are still other options.
You also can always fire this doc, if unresponsive, and/or report him to your insurance as unresponsive to your request for a second opinion by a specialist, though you have most/all of the symptoms. I have done this and it works.
If you seem black-balled in this medical group, you should ask for the second opinion outside the medical group. Find out the doc's name and send him the checklist ONLY, and your most recent thyroid lab results.
BTW, do you have copies of those? If not, you need to get them. What are the results?
If you are too ill to deal with all of this, ask your mother or someone to help you.
But don't give up! There is no reason you could not at least TRY thyroid med.
<p>[This message has been edited by Tree Frog (edited 12-20-2001).]
My mom is on a low dose of thyroid meds. I am almost tempted to try hers. This is her doctor I started seeing because she liked him a lot. It is funny, she is borderline hypo and has NO symptoms and he gives her meds but I have all symptoms and I get nothing other than a referral to a shrink. My symptoms seem to go between both hypo & hyper. A part of me is afraid to see an endo doc because what if they say everything is fine.
Hi FibroBabe. Meep has posted a really comprehensive list of interview questions to use BEFORE you see a new Endo. Sort of a short-cut to making sure you find someone caring who is going to listen. Look for the post of 11/2/01:
<A HREF="http://www.healthboards.com/ubb/Forum118/HTML/000005.html" TARGET=_blank>http://www.healthboards.com/ubb/Forum118/HTML/000005.html</A>
I don't know which part of Pennsylvania you're in, but you can search through this link from the AACE directory of Endos who specialize in Thyroid Dysfunction to see who's in your area.
<A HREF="http://www.aace.com/memsearch.php?action=doSrch" TARGET=_blank>http://www.aace.com/memsearch.php?action=doSrch</A>
These are docs registered with the American Assn of Clinical Endocrinologists. It is not necessarily a list of Top Docs. For that, you may wish to check out the Thyroid Info (.com) discussion forum. It's the commercial site that Mary Shomon (thyroid.about.com) runs, so I can't post a direct link.
Hang in there. You WILL find a doctor who cares enough to listen. If not at first, well, you hired them and you can fire them just as easily.
I found a test I had done in 6/98 when I was about 2 months pregnant and OK: () = normal ranges
Thyroxine 11.4 (4.7 - 11.4) = Normal
T3 uptake .69 L (.76 - 1.23) = Normal
Free Thyroine index 7.9 (3.6 - 14) = Normal
TSH 1.3 (.5 -6.9) = Normal
A test done on 1/01 when this sarted up but was feeling better:
TSH 1.62 (.4 - 4) = normal
Free T4 1.53 (.8 - 1.9) = normal
Another test on 2/01 by the ob/gyn:
I had a Thyroid Scan done 6/01. It said it was not enlarged and there were no nodules or goiters but the thyroid uptake was in the hypothyroid range at 11.2%.
My doctor's office said their normal range is 5-15 or 5-20 so it was normal for them. I called the hospital where it was done and they said their normal range is 15-40 or something like that. They said lab ranges vary. So I don't know who to beleive.
Do you have any take on these numbers. They all do look normal. I dont know what to think of the T3 uptake being low in 98 and that is when I was feeling good but I don't know if pregnancy effects that. I think I am going to try the basil temp think every morning. I tried once for about 3 days but it is too hard with the kids. My husband works tonight but will the be off until Thursday, so he can get them while I take the temp. My temp is usually low. I rarely reach 98 degrees orally and after I had my second daughter both my breasts became severely infected and before the doc saw them she didn't think they were infected because my temp was only 97.1. Then she saw them and almost fell over. I have read about post pardum thyroiditis and it makes sence, I have read about a connection with rhubella and graves disease and I wonder if the rhubella shot that gave me the day before this started had anything to do with it. I have read that if someone in your family suffers from autoimmune diseases you are more likely to have a thyroid problem and I have 2 brothers with possible MS and my mom has meniers (?spelling) syndrom that I just found out is considered an auto immune disease. Sometimes I think I read too much, but sometimes its the only think that calms me although I hate to read. But I guess because it is something I can relate to it makes me feel like I am helping myself. I read the boards on the people with anxiety and they all seem to be afraid of things (places, people, dying, etc...). This is not me. I am not afraid of anything other than what is happening to me. I still go out, I still take care of the kids, I still make dinner, etc... Something got messed up when I had my daughter 3 yrs ago and I just want it fixed. I am afraid it will turn into depression.
And thank you ArtfulD. I did find an endo doc on the list who has been recommended to me. Dr. Tavani. I have heard she is really good and now that my husband started a new job and got new insurance, she is listed in their plan.
Fibrobabe<p>[This message has been edited by fibrobabe (edited 12-21-2001).]
I was going to stay off the board for a few days, being holidays, but I woke up before everyone else, so here I am!
I was on state disability at TSH 2. I am not well-versed on the other test meanings, and I put little value on tests to tell what level anyone needs to be at. Artful and Meep may respond with their knowledge about your other test results.
Personally, I am too ill to function if my TSH is above one. That TSH may be too high for you. You may very well need more thyroid than your body is producing.
My body temp was never above 97.6 for years, (though when I was well, my body temp used to be 98.6).
I could be deathly ill and not have a temp above 98 or 99. Doctors told me that was normal. I knew it wasn't normal for me. I did not used to be that way. If I became ill, it took forever to get well again.
I went from an energetic and slender person that could eat as much as I wanted, to 80 pounds over weight, no muscle tone, no energy, hair falling out, painfully dry skin, etc. etc, and still I was told I was normal.
I knew it was NOT normal for me. I tried every kind of supplement. I ate almost nothing. I worked on every concievable inner and outer imbalance.
I had physical panic attacks. I say physical, because like you, I was not specifically afraid of anything.
My heart raced and I could not breathe, at times, for no apparent reason. When I did finally get refered to an endo, the chief of staff was positive that I was hyper.
A TRH test revealed that indeed I was not hyper, I was hypo! My hormones had crashed. The thyroid balances everything in the body and mine was not doing it's job.
The TSH revealed the level of thyroid activity I was at when not well. Someone else may be perfectly well at the same TSH. I beleive the same is true of you.
What is confusing is when we read and see things that pertain to us and can't find adoc that sees the same thing.
Don't quit reading. Don't box yourself into anyone else's view of you. You alone know your body and what is normal for it.
Are you actually going to get to see the new doc????
I am so happy for you!
All you need is a thyroid med trial to see if it makes a difference.
Then you can work out tweaking the dose from there!
<p>[This message has been edited by Tree Frog (edited 12-22-2001).]
Well first I guess I need to get my doc to refer me to an endo doc. I don't know how they do that if according to them, they have no basis if the blood work shows normal. It's just hard to get things done because of the holidays. I hope will start the new year with the goal of fighting for myself. I usually don't because I don't want them (the docs) to think I am a pain in the *** . I am also afraid if you tick them off they may write something bad in my file (like in that Seinfeld episode (if you watch Seinfeld)). I am going to try the psychiatrist against your better judgment. It's just to have someone to talk to for an hour. I feel better when I talk (or type) but how much can my family stand to listen!!
There is never anything wrong with seeing a counselor/
It can't hurt.
I am just saying it is unlikely it will get you a DX that your pain is not mental, but is purely physical.
Maybe the ccounselor can help you become more assertive of your real need to be taken seriously by medical doctors.
I agree with wait til after the holidays to sort these things out and take some steps toward what you need.
I doubt a doc would be listening very well right now!
If you read the Info Archive here, you will get lots of info about how to get a referral, etc.
The worst part will be learning how to go about it.
You can always ask for a second opinion, with an endo outside your medical group.
That puts the docs on notice that they better take you & your case seriously.
Listen, sweetie, you pay the bills. You are the consumer.
You can ask for copies of the doctor comments about your illness, and submit information of your own choice to be added to your rescords...such as that your physical complaints, family history of thyroid imbalance, and list of hypothyroid symptoms have never been taken seriously by that doctor! His thyroid protocol is not the latest or last word on the subject!
We do have to be our own healthcare advocates. We have to be proactive. Even the most caring and senstive docs don't have enough time or energy to "take care of" us.
They can't be under our skin, knowing what we need and are going through. only we know that.
It IS hard to be assertive when we are taught to let docs be the authorities over our healthcare needs. And when we are already ill, it is very hard on us to have to take care of ourselves. But we have to! I wonder why your mom didn't ask her doctor exactly why he is not allowing you a trial of thyroid med?
Some of us understand very well, so feel free to vent, and express yourself here. Most of us have had a struggle getting what we need, and you are definitely not alone!
We are here to help you with the process and to listen.
Your test results DO appear to be mostly "normal":
Here's a link to some descriptions of what the tests mean. It is a little technical, but it is good info to help deccipher what tests measure what. <A HREF="http://www.muhealth.org/~daveg/thyroid/thy_test.html" TARGET=_blank>http://www.muhealth.org/~daveg/thyroid/thy_test.html</A>
The T3 Uptake test that was low in '98 indicated that at that time you had relatively little T4 in your blood that wasn't bound to proteins compared to what WAS. Though your Total T4 (aka Thyroxine)was bordering on hyper at that time, your Free Thyroxine index (a calculation of free T4 not to be confused with the Free T4 test) was firmly in the middle of the range. FTI (Free Thyroxine Index) Is calculated by multiplying the T3 Uptake by the Thyroxine. There was a bit of binding going on then--probably due to the fact that you were pregnant at the time. There was not a Total or Free T3 test done, so you could still have been havig hypo symptoms at that time if your T3 was low, but your T4 and TSH indicate otherwise.
Later tests are still very close to where most people feel well, but it still might not be where YOU fell well. I know that personally, I have to have Free T3 and Free T4 both above the middle of their ranges in order to feel well. My doctor ignores the TSH unless the T3 and T4 are out of range.
Your Iodine Uptake was low on the "normal" scale and could indicate borderline hypo.
If you can get your doctor to test Free T3 and Free T4 as well as TSH, that will give a better picture of what is going on. Before you do that, though, stay off of any soy products for a month so that the thyroid hormones it has bound in your blood will have a chance to clear. It is not unusual for your test results to be normal, but your symptoms to be AWFUL if you are on soy because of the way it interferes with the metabolism of your thyroid hormones.
Geting the temps can help, too, though there are other things that can cause a low temp like adrenal fatigue and anemia. Some of the other symptoms you describe also sound like possible Adrenal fatigue--especially the anxiety, so that may be worth looking into.
Meep<p>[This message has been edited by Meep (edited 12-27-2001).]
I don't think I have every had soy so there is no problem staying away from it. Your explanation of the test results was welcomed and helpful.
Any explanation as to why these so called "anxiety attacks" seem to revolve around my period?
There is such a wealth of information between your posts, I always learn so much by reading everything I can.
I just wanted to add. When I first started complaining of my symptoms, they did a TSH, Free T4 and T3. The TSH was in the high end of the lab 'normal' range..so the endo said everything looked fine. The symptoms continued to worsen and I went back, but this time I asked for the TPO(antibody test)
and it came back tripled the norm and now my TSH was over the 'normal' of course.
Had I had the TPO done with the first tests, I wouldn't have had to endure all that time without meds.
Elevated antibodies, however low the number, indicate trouble down the line.
Why isn't the TPO mandatory in the initial testing routinely?
Fibrobabe, soy is in NUMEROUS things you likely have in your pantry or fridge. Just a few things that contain large amounts of soybean oil are margerine, most salad dressings, most peanut butters.
Many foods that have vegetable oil in them contain soybean oil, since it is one of the least expensive oils the food manufacturers can buy. Reading labels is time consuming, but it is in your best interest to limit foods that have soy in them, and the payoff is worth it.
This is my theory about your anxiety around the time of your period: If you are suffering from adrenal fatigue, your adrenals won't be able to produce enough cortisol in times of higher stress. (The hormonal changes around the time of your period are stresses like any other.) When there isn't enough cortisol, the adrenals try to make it up by producing more adrenaline. Higher ammounts of adrenaline lead to anxiety.
The result of not enough cortisone in times of lower stress is that you tend to be fatigued, achy, exercising leaves you exhausted for days, you are prone to anxiety attacks, probably fair skinned and have thin/wispy hair, Intolerant to cold or heat, crave sweets but then crash (you are likely hypoglycemic), get light headed if you stand up quickly, and you are thin or if not thin, your weight fluctuates--you gain weight quickly, but can lose it. (Pure hypothyroidism makes you gain, but you CAN'T lose it.)
Fibrobabe, I just re-read your initial post, and have another angle on your anxiety that your doc might well be overlooking.
If SRI antidepressants like Paxil and Prozac make your anxiety WORSE, then the problem may be true anxiety rather than depression. SRI means "Seratonin Re-uptake Inhibitor". They work to increase the amount of seratonin in your brain. Some people have anxiety attacks because they have TOO MUCH SERATONIN.
If too much seratonin is what is causing your anxiety, then of course these antidepressants will make your anxiety worse. What might work better for you is the anti-anxiety medication Buspar. It LOWERS the amount of seratonin thereby helping to alleviate anxiety symptoms.
Knowing that, it sounds like your doctor may be taking the wrong approach.
I took it several years ago and it did help me to deal with some anxiety at the time, but I ended up on a higher dose that caused some depression as a side-effect. Had I been taking the proper dose, I am sure the depression would not have been a side-effect. When I came off of it, the depression disappeared, but by that time, I had dealt with a really ugly relationship and job situation that were causing the anxiety, so the anxiety was no longer a major problem either. It WAS still there, though. Getting my thyroid and adrenal hormones in line like they should be has all but eliminated it at the source.
It worked, is what I am saying, but if you take it and it makes you feel depressed, slightly lowering the dose would likely get you back on track.
It might be worth discussing this with your doctor as a treatment option.
Please do not try to sneak in disallowed websites!<p>[This message has been edited by moderator1 (edited 01-01-2002).]
Some of what you have said does sound like me. I have been having problems with heat and cold intolerance. My hair is thick but I have been loosing more lately I notice when I shower. Since the birth of my second daughter (when all of this started), my hair has become dry and frizzy. I am slightly over weight. I really don't try to loose the weight so I can't say "I can't loose it!" I do go thru times of chocolate cravings, which does tend to leave me feeling sleepy after. (I have a brother who is hypoglycemic).
So much of everything sounds like me. I don't know which to look at. I just strongly feel like it is not anxiety (as in the sense that somethink from my past is lerking in my head or that I don't know how to handle life.) There is a connection with the birth of my daughter, I just don't know what!