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Old 12-25-2001, 11:02 AM   #1
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Fibrobabe...new here and need some help!

Hi,
I have been reading the posts here and everyone is so informative. Your replies have been particularly helpful information and so I am hoping you can send me some imput.

I am new, this is my first post here and am so upset I can hardly type. I had to cancel my visit to my daughter's house because I feel so terrible. It is Christmas Day and I am staying home.

2 years ago I was diagnosed through routine labs that I had Hashimoto's. This was no surprise I guess as my maternal grandmother died in her 50's as there was no medicine during her lifetime to save her. My sister developed a tumor on her thyroid which was benign but they removed her thyroid gland anyway.

In Oct.99,
my initial TSH was 6.3(0.4-5.5)
T4 was 7.4(4.5-12.0)
T3 was 115(60-180)
TPO was 62 (0-34)test for anti-bodies
I was put on .50mcg. Synthroid and have been re-rested at least 10 times in 2 years to keep them 'normal'. At one point the levels required a boost to .75mcg and then after several months he put me back to .50mcg which is where I was until recently.

In March, 2001 my labs: TSH was 5.33
Free T4 was 1.23
So he kept me at .50mcg.

Around September I noticed increasing fatigue and increasing trouble with swollen glands/sore throat always a chronic problem. My other routine labs, CBC/diff, lipid panels were all normal except my lymph percentages were still just over the high as usual.

The fatigue, glands and then increasing muscle soreness became overwhelming by November and never thought it could be my thyroid, thinking it was a flu or viral thing. By December I couldn't do anything without feeling such overwhelming fatigue, my leg muscles in the back from top to bottom felt like I had been hit with a bat. It was like a terrible flu.

He faxed me a referral to get thyroid labs, as I was too exhausted to get his office. And even then it took another week to find a morning that I managed to get there and I slept alot afterwards.

The thyroid labs done 12/17 were: TSH was 6.75(0.4-5.5)
Free T4 was .99(4.5-12.0
T3 was 112 (60-180)
(other blood labs normal)
So he increased the Synthroid to .75mcg on 12/18, today is 12/25 and I am still feeling the same as I did last week. My husband says the increase wasn't enough and so do others I know who take Synthroid.

I am so tired, it's taken me 3 times to write this. I tried to wash just 2 sheets in the machine, in the dryer and put away and I hurt everywhere. I am frightened immensely. I will call my doctor tomorrow but the thought of trying to get dressed and get there seems physically impossible.

Am I overeacting? Sorry for taking so long, but need some imput however much....thank you.

 
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Old 12-25-2001, 07:50 PM   #2
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Meep HB UserMeep HB UserMeep HB User
Re: Fibrobabe...new here and need some help!

You aren't overreacting. With Free T4 being that low it is a wonder you are able to function at all. The increase in dosage will likely help, but probaly isn't enough. It IS the right choice for now, since you don't want to cause an adrenal crisis by overstressing your already stressed body with a large dose increase. You may not notice significant improvement in symptoms for anywhere from 2 to 8 weeks, so be patient (I know it is hard, but it IS worth the wait).

My guess is that your doctor is treating you primarily to keep your TSH in the "normal" range. In your case, this doesnt appear to be enough. Getting your TSH to around 1 or so would be a good goal, if you can talk your doctor into it. An argument that you can use is that 1 is also still in the "normal" range and you would like to see if that would make a difference in your symptoms and ask if you can target tht as your treatment goal.

An alternative would be to treat to get your Free T4 and Free T3 above the middle of their ranges to feel your best. Some doctors are open to this approach, and some aren't.

If your doctor doesn't believe in treating yout until you feel well, it is probably wise to cut your losses and move on. You pay for good healthcare, you DESERVE good healthcare.

Hang in there!<p>[This message has been edited by Meep (edited 12-25-2001).]

 
Old 12-25-2001, 09:24 PM   #3
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ENUFISENUF HB User
Re: Fibrobabe...new here and need some help!

Karima -
Welcome! I'm sorry to hear you are not feeling well. I am glad that you found this board though. It has been a tremendous avenue of support for me and many others here.
I agree that the increase in Synthroid is enough for now. I am not surprised that you have not seen a difference in only a week. It has not been long enough to tell. My doctor waits one month before making any judgment calls about dosage changes; some doctors wait 3 months. So, (I konw you don't want to hear it) be patient! (I hate hearing that line myself, but it's all you can do.) It will get better.

I would suggest to that you get The Thyroid Solution -- you can get it online - and read the sections you feel would be helpful to you. Also, I would begin to research different thyroid medications. Synthroid may not be the best one for you, and it is helpful to know that there are alternatives out there should you decide to switch. (Synthroid is synthetic T4. There are drugs with T4/T3 combos as well.)

Best wishes for good health! I'm sorry your Christmas wasnt' so great. If it is any consolation to you, my wasn't so hot either.

Keep us posted.

ENUF <IMG SRC="http://www.healthboards.com/ubb/wave.gif">

 
Old 12-26-2001, 08:11 AM   #4
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Karima HB User
Re: Fibrobabe...new here and need some help!

Thank you to you both for replying. I am so grateful for the information if not exactly thrilled with my immediate hopes.

First though, in re-reading my original post and specifically my currentFree T4 results -.99, the menu should have read:0.61-1.76(I put the menu for T4, 4.5-12.0)

I didn't know there was a Free T4 and a T4 test and that they were different. Which means then that my Free T4 would be normal at .99? If it is, could my extreme fatigue and disability be applied to the TSH rise of 6.75 (0.4-5.5)only?

Which test is a more definitive test, the T4 or Free T4? I just slept 9 hours straight through and have been up 30 minutes and want to go back to bed? My muscles in legs and arms ache just like the flu...

THANK YOU FOR ALL YOUR HELP..Karima
I

 
Old 12-26-2001, 08:46 AM   #5
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ArtfulD HB UserArtfulD HB User
Re: Fibrobabe...new here and need some help!

Hi Karima, and welcome. Hashimoto's is such a dreadful condition! The antibodies attack the thyroglobulin (thyroid-binding protein) and the body has increasing trouble absorbing T4 until one becomes hypothyroid. Your TSH is so high right now (and T4 so low), no wonder you're uncomfortable.

Concurrent with my Endocrinologist (who says nothing can be done), I'm also working with an acupuncturist/herbalist to reverse my Hashi's and stop this autoimmune nonsense. My situation is different from yours, as I no longer have my thyroid (removed for cancer) so my Synthroid isn't fighting with my gland's natural production. But I am not advocating the removal of your thyroid. On the contrary, I think you have certain advantages that I don't.

Continue taking your synthroid. It takes 4-6 weeks for a dose to fully assimilate, so you may notice improvements with time. However, you may need even more synthroid (gradually increased) since your Free T4 is decreasing so quickly. Watch (and catalog if you can) your symptoms, paying attention to any changes with dosage fluctuations, diet, etc.

In addition, you may want to seek the help of a holistic physician (herbalist, acupuncturist, homeopath, etc.). I had chronic fatigue syndrome several years ago and eventually reversed that autoimmune disorder through nutrition and supplements. Now I am working diligently toward the same with my Hashi's. I come from a family of physicians, so I am not slamming doctors. But, unfortunately, most Western physicians are uninformed in approaches that may be useful in reversing unexplained disorders; a doctor's training focuses on treating symptoms. Holistic practitioners' approach works toward complete health.


There are several supplements and herbs that may be useful with your body ache and fatigue. According to folks on this board:

The vitamins that are needed for assimilating and converting thyroid med are:

A-8000mg
(with D)

Selenium-200mg
(The Thyroid Solution says at least 50mg)

B-100 complex
C-250mg
E-400mg

Some also take 4mg of copper and 50mg of zinc after a med dose raise, and those minerals help keep the heartrate calm and even.

Thyroid meds should be taken with water on an empty stomach.

You should wait at least one hour after your thyroid meds before taking other supplements.

Calcium, dairy products, etc. should be taken NO SOONER than 2-4 hours after your thyroid meds.

It may be helpful to eat less soy products, as the phytoestrogens may make it difficult for your body to absorb and process thyroid hormone.

Personally, I've been helped immensely (particularly with fatigue and body ache) with an herb called Maca. I use a powdered form (Royal Organic Maca), as it is more cost-efficient. This is the only thing that has worked to stop my body ache of several years' duration.

I have also found colloidal silver to be helpful with body ache, though I suggest you only use this short-term and under a health practioner's care. I used it for a couple of weeks when the ache came back, and I have been ache-free since. But, unless you make it yourself, colloidal silver is very expensive and it has antibiotic qualities, so it should be used as directed.

Research these supplements, speak with an alternative health care provider, and see how you can best help support your immune system.

Hang in there. It's a long, frustrating process, but you will feel better!<p>[This message has been edited by ArtfulD (edited 12-26-2001).]

 
Old 12-26-2001, 09:06 AM   #6
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ArtfulD HB UserArtfulD HB User
Re: Fibrobabe...new here and need some help!

Karima:
Free T4 is a much better indicater of your body's absorption capabilities than plain T4, as the latter can be more easily changed by outside influences.


Here's a guide on how to interpret your Thyroid test results:
<A HREF="http://thyroid.about.com/c/ht/00/07/How_Interpret_Thyroid_Test0962932960.htm ?terms=free+t4" TARGET=_blank>http://thyroid.about.com/c/ht/00/07/How_Interpret_Thyroid_Test0962932960.htm ?terms=free+t4</A>


The following describes tests you may encounter during your return to health:

<B>Thyroxine (T4):</B> This shows the total amount of the T4. High levels may be due to hyperthyroidism, however technical artifact occurs when estrogen levels are higher from pregnancy, birth control pills or estrogen replacement therapy. A Free T4 (see below) can avoid this interference.

<B>T3 Resin Uptake or Thyroid Uptake:</B> This is a test that confuses doctors, nurses, and patients. First, this is not a thyroid test, but a test on the proteins that carry thyroid around in your blood stream. Not only that, a high test number may indicate a low level of the protein! The method of reporting varies from lab to lab. The proper use of the test is to compute the free thyroxine index.

<B>Free Thyroxine Index (FTI or T7):</B> A mathematical computation allows the lab to estimate the free thyroxine index from the T4 and T3 Uptake tests. The results tell us how much thyroid hormone is free in the blood stream to work on the body. Unlike the T4 alone, it is not affected by estrogen levels.

<B>Free T4:</B> This test directly measures the free T4 in the blood rather than estimating it like the FTI. It is a more reliable , but a little more expensive test. Some labs now do the Free T4 routinely rather than the Total T4.

<B>Total T3:</B> This is usually not ordered as a screening test, but rather when thyroid disease is being evaluated. T3 is the more potent and shorter lived version of thyroid hormone. Some people with high thyroid levels secrete more T3 than T4. In these (overactive) hyperthyroid cases the T4 can be normal, the T3 high, and the TSH low. The Total T3 reports the total amount of T3 in the bloodstream, including T3 bound to carrier proteins plus freely circulating T3.

<B>Free T3:</B> This test measures only the portion of thyroid hormone T3 that is "free", that is, not bound to carrier proteins.

<B>Thyroid Stimulating Hormone (TSH):</B> This protein hormone is secreted by the pituitary gland and regulates the thyroid gland. A high level suggests your thyroid is underactive, and a low level suggests your thyroid is overactive.

 
Old 12-26-2001, 09:35 AM   #7
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Karima HB User
Re: Fibrobabe...new here and need some help!

Hi ArtfulD,
Wow, thanks, there is so much the doctor never explained to me.

I noticed you mentioned my Free T4 as being so low. I thought it was in the normal range being at .99, as the lab menu reads: 0.61-1.76. or am I interpreting my figure incorrectly?

I am lactose intolerant so all dairy is out and depend on Soymilk although can tolerate only about 2 glass of it a day..hope that isn't interfering with my thyroid because I also take 2mcg of Estrace(estrogen). I take the Synthroid in the a.m. and the estrogen at bedtime.

I take 1000Mg. sustained released Vit.C, over the counter multi vitamin/mineral, 400mg. dry Vitamin E and that's it. I didn't know about the zinc and selenium needs at all. I cannot even tolerate B50's because even with food, any B complex upsets my stomach.
I know I need them but cannot figure how to get them down without the nausea and indigestion they produce...
So I only get the very little amounts in the multi-vitamin...

Sorry about all these questions but this board has given me so much help and relief in just one day then all the time spent with the doctors...

I am so grateful to all of you...Karima

 
Old 12-26-2001, 10:27 AM   #8
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Meep HB UserMeep HB UserMeep HB User
Re: Fibrobabe...new here and need some help!

OUCH! Did I read that correctly? You are drinking Soy milk? Soy interferes with the way your body metabolizes thyroid hormones and can make you feel AWFUL. In addition to that, if your thyroid gland is still functional, Soy suppresses its action as well, so it is a double whammy on your well-being.

Your labs are "normal", but "normal" is not a word I like to use when referring to lab results. What is "normal" for you may not be normal for someone else, and that's the reason there is a range rather than a single number. If you aren't feeling well at the low end of the range, then perhaps you need to be at the other end of the range, or right in the middle, to feel better. Like I was saying before, see if your doctor will work with you on that.

Meanwhile, STOP the soymilk (and any other soy based food) for a month, and I would bet that you will feel much better. At that point, add soy back to your diet and notice the effect that it has on how you feel. If you need a milk alternative, rice milk or coconut milk are both MUCH more thyroid friendly.

Here's a link to some good, solid reasons why soy is not good for you: <A HREF="http://thyroid.about.com/cs/soysdownsides/" TARGET=_blank>http://thyroid.about.com/cs/soysdownsides/</A>

...and my favorite soy website that has loads of information backed up by research: <A HREF="http://www.soyonlineservice.co.nz/" TARGET=_blank>http://www.soyonlineservice.co.nz/</A>

Please, for your health, stop the soy.

Meep<p>[This message has been edited by Meep (edited 12-26-2001).]

 
Old 12-26-2001, 10:46 AM   #9
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Re: Fibrobabe...new here and need some help!

Hey Karima. Sounds like you're on the right path. First, I agree with Meep. Try drinking a nut or oat milk instead of soy. It really may make a significant difference in how you're feeling.

Re: the T4 result. I was looking at the wrong normal range, so thanks for the correction. But it is still on the low side, and the fact that it's been decreasing shows that your Hashi's is rather active right now. And your TSH is still way too high for comfort. Most of us feel best somewhere between 1-2, although it varies with the individual(some feel best when it's closer to 0).

For B-complex, you might want to try a product called "B-Total." It's a sublingual liquid that you hold under your tongue. Has a bit of a niacin (B-12) kick to it, so I sometimes get a *****ly, itchy red flush for about 30 seconds, but it subsides. It's the best absorbing product I've found -- vitamins and minerals upset my stomach as well. Tastes okay. It's "fruit flavored" but you can stil taste the B. Fortunately, you only need to keep it under your tongue for about 30 seconds or so.

I also find it helpful if I take supplements at night a few hours after dinner. Less nausea, and I can absorb them in my sleep. But I take the B-complex in the AM, because it gives me energy.

Maca naturally contains selenium, but also helps balance all the body's hormones so it may be worth trying as well. If you're skeptical about herbs right now, however, do start with some selenium.<p>[This message has been edited by ArtfulD (edited 12-26-2001).]

 
Old 12-26-2001, 11:06 AM   #10
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Karima HB User
Re: Fibrobabe...new here and need some help!

Hi,
I had no idea that 2 glasses of soy milk could make such a difference with the thyroid gland and med. Will stop immediately and try the other 'milk' options mentioned.
So I am figuring that the .99 on the Free T4 might not be low enough? Prior to this test, it always came back in at about 1.17 to 1.23 and stayed in that area. And I was not very zippy at those levels either but this fatigue is just over the limit even for me.
Frankly the whole Free T4 and TSH figuring is confusing and frustrating under any circumstances but worse when you brain is functioning on sloooooow mode.
I have to keep re-reading my previous posts to remember what I wrote within the last 30 minutes!
And while I am at it, I have been experiencing panic episodes recently(few months)which are terrible and sometimes even in my own house!
Geez, I don't know what to expect next!

 
Old 12-26-2001, 11:20 AM   #11
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Re: Fibrobabe...new here and need some help!

I know it's confusing. You're hypo (low) thyroid when your T3 and T4 levels are low and your TSH is high. As the T3/T4 decreases, TSH increases.

The panic attacks are probably related to thyroid as well. It's a hyperthyroid symptom, but many of us notice a combination of hypo and hyper symptoms, particularly when we're assimilating a dosage change of our meds. Breathe through them, but note when they occur (time of day, what you've eaten, etc.), if they increase or decrease, get worse or better, etc. It's likely that they will go away as you adjust your medication to a level that works for you. But if you see additional hyper symptoms, it may indicate that you have to hold at this dosage for a little while.

Have you had a chance to read through the Information Archive yet? There are really comprehensive lists of hypo and hyper symptoms that are useful as reference.<p>[This message has been edited by ArtfulD (edited 12-26-2001).]

 
Old 12-26-2001, 11:33 AM   #12
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Karima HB User
Re: Fibrobabe...new here and need some help!

Hi ArtfulD,
Information Archives? Are you referring to all the other posts that have appeared here? Because I have started doing that and have read backwards from page 22 through 20.
If that is not right, then let me know how to locate that site.
So if the Synthroid increase is doing its job right, when I am retested, my TSH should have come down and my free T4 back up. I realize that how far down on the TSH and up on the free T4 is determined on how I am feeling. Whatever point that I am able to function will be 'normal' for me.
The sublingual Vitamin B you mentioned sounds very good, is there a brand name I should look for?
You are going to need a Tylenol by the time you finish answering all my questions...thank you again, Karima

 
Old 12-26-2001, 12:04 PM   #13
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Re: Fibrobabe...new here and need some help!

Karima: Welcome to this forum. There is so much information and support here to help people with our disease. I just wanted to add that soy is hidden in so many of our foods. I have been diligent in reading labels and it can add up to quite of alot of soy intake each day if we don't watch it. I can also add that it was making me feel pretty awful but now that I'm aware of the problem I've had much improvement by simply watching out for soy in my diet. I was not advised by my doctor or anyone regarding soy - I learned it here and fortunately so. Best Regards, Blondegal

 
Old 12-26-2001, 12:08 PM   #14
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Re: Fibrobabe...new here and need some help!

By jove, I think she's got it! Hopefully, you will see a decrease in your TSH and increase in your Free T4 next time 'round.

The Information Archive is a thread to which we all contribute useful bits of info. It gets bumped up to the top of this board every so often (as does our "Tell Our Stories" thread), and we try to keep it on the most current page. I see it's down toward the middle right now. Here's the link to it:
<A HREF="http://www.healthboards.com/ubb/Forum118/HTML/000005.html" TARGET=_blank>http://www.healthboards.com/ubb/Forum118/HTML/000005.html</A>

A Link to Our Stories: <A HREF="http://www.healthboards.com/ubb/Forum118/HTML/000045.html" TARGET=_blank>http://www.healthboards.com/ubb/Forum118/HTML/000045.html</A>

The B-complex liquid is actually called "B-Total sublingual" and I believe that is that name that will help the health food store folks find it. I can't mention the manufacturer because we can't make commercial references on this board, but it's not a big name. You can find also the product on the web if you do a search for "B-Total sublingual." It often comes in twin-packs (two bottles for the price of one) -- a good savings.

As for your questions, ask away! That's what we're here for. A lot of folks were here for me (and still are) during my critical moments. I'm sure you'll be posting back to tell your story and help others in no time.

 
Old 12-27-2001, 09:18 AM   #15
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fibrobabe HB User
Re: Fibrobabe...new here and need some help!

Hi Karima,
I am so sorry not to respond right away, I was not on line for a few days. Although, I see the more qualified people have responded to your inquiries. I'm not sure how to reply. No one knows what is wrong with me yet. My new doc thinks it just anxiety but I don't think that is all. I think anxiety is a symptom I am experiencing from something else that is wrong. I really don't know anything about thyroid meds since the docs don't think my thyroid is the problem. Tree Frog is the best person to respond.
Good Luck!
Fibrobabe

 
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