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Confused!

Hi,
I am very confused by my test results. I have high Igf-1 (407), high 24 hour urine cortisol, (71.2) high TPO AB (79), and normal thyroid hormone levels - TSH .9 at the latest reading, T3 100, free T4 1.0. My ferritin is low. My symptoms are weight gain, acne, hair loss, tremors when I exert pressure on my legs (like biking or standing on my toes) fatigue, and dry skin. None of this seems to add up. My endo says they are not going to medicate me because my thyroid levels are normal, but I am having such a hard time with my symptoms.
Best Answer
Avatar universal
Need your reference ranges for your thyroid tests. But based upon the ranges we normally see.  Your Free T4 is VERY low in the range. Within the range but very low in the range.

The T3 test appears to be "total" T3 test which is an outdated test of little value. You really need to be tested for FREE T3.

Many people here report that just being "somewhere in the range" is NOT good enough.  In fact they need to be WELL up into the range meaning at or above 50% of the range.  The better target that seems to work for many people is to obtain BOTH of the following:

1) Free T4 (FT4) to be in the MIDDLE of the range (50%) or slightly higher

AND- that means in addition

2) Free T3 (FT3) to be in the UPPER 1/3 (66.7%) of the range

Your symptoms are consistent with Hypo.  You may need to find another Dr.  WHich is no surprise. Many folks here have had to go through SEVERAL Dr's before finding one that will actually treat you.  Endo's are not any better either. Most endo's these days concentrate on Diabetes and little else.

Also the reference range for TPO would be helpful But I think the test of 79 is usually above the recommended top of th range. Which would if true, indicate that you have Hashimoto's disease. This is an autoimmune condition where your body is attacking and killing your thyroid.  Hashi's is the most common cause of low thyroid in the modern world.  It is progressive which means that over time your thyroid gland will produce less and less hormone. the ONLY way to replace that lost hormone production is with medication.  So sooner or later you WILL be on medication.

Many people who are low thyroid also are low in several other things.  Additional tests you may want to consider.

Vit D
Vit B-12
Iron
You already know you're low in ferritin

Again DEMAND that you get Free T3 test done along with Free T4.  Never not get BOTH of these together.

TSH test is really a screening tool.  It is horribly unreliable and basically should not be used in my opinion and many others here. We can point you to several credible medical research documents that state that TSH is virtually useless.  But Dr's are taught in medical school that it is the end all be all gold standard perfect test.  Nothing could be further from the truth.

If you find your DR whether Endo or not believes solely on TSH. Get another Dr ASAP!  He will only keep you feeling sick.

Thyroid and medical industry is at odds. That is why so many people end up here to find relief and knowledge.  You have to be your own best advocate and it is a long road and may require several Dr's and a lot of education on your part.  I'm just saying to do not be surprised if you receive resistance by Dr's but do not give up. Learn as much as you can and understand that perseverance may be required!
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Avatar universal
I do agree with you that many people need iodine, however since my body is able to produce it's own T3 when I take T4, I'm not sure that I do... I have heard that iodine can make hashi's worse. There is so much disparate information out there, what works for some people may not work for others. I do take selenium, and some people have said the real problem with taking iodine occurs when someone is selenium-deficient. I will investigate more because if it helps (and prevents cancer) it is worth it. I'm not ready to count anything out until I'm feeling better. Just got back a new set of labs and my thyroid has gone downhill again despite the larger dose of levo... they are upping my dose and we will see. I wish this were a faster process, but if wishes were fishes, etc... =)
Helpful - 0
Avatar universal
Hi Barb,
I had to find my book again.Re Iodine for Hashimoto's.
Dr. Brownstein's books discusses that and how he treats auto immune thyroid diseases..
His books are very interesting and easy to read.
" Iodine Why you Need it and Why You Can't Live Without It"
and "Overcoming Thyroid Disorders"
Just FYI,   he does explain why there is such a thing as Iodine Scare
amongst practitioners. When I was a new RN in the 70's , I remember giving Iodine drops in water as a treatment for most diseases if not ALL.. Then it disappeared. He explains WHY and a group of 54 plus Doctors with him in different states who are in a sort  of a crusade trying to raise the Iodine knowledge back. I have followed his Iodine regimen since  the last couple of years and I am fine / my labs are fine with it. i take Iodine every day. I have hypothyroid, and Dr. Brownstein  does too. According to the book, hypothyroids like me are susceptible to breast cancer after 20 years being hypothyroid.. I have fibrocystic breasts and Iodine is a treatment to lessen breast discomfort or prevent worsening etc.   Iodine is proven by where people live-- causes cancer where the soil is lacking in Iodine, and less incidence in Iodine rich soils. I hope you would read them. Good luck
Helpful - 0
Avatar universal
I use both forms of Magnesium.
Magnesium L Threonate is the new Mg that MIT discovered recently
(2010) that will cross the blood brain barrier. Been on it for 6 months. Being hypothyroid, my memory could use lots of help. I got back my memorization skills esp. for numbers - after 10 years TG.
Magnesium spray helps achiness - Fibromyalgia.. it works right away. Its one way to build up your Mg faster.Do not spray to open skin as it will burn just like alcohol. I like Ancient Minerals vs Swanson's as its less sticky. I use the flakes,its cheaper.  dilute it !:! , 1 cup flakes to 1 cup bottled or boiled water. I used it so much at the start, but I don't need it as much now. Oral Mg takes 6 to 12 months to build  to normal body levels. Blood test for Mg will not show a true picture as Mg is also stored in the brains, nerves, muscles, etc. Your body will only absorb what it needs. I use it now after my shower and keep it on. My family's results on Mg is just amazing !! Much less snoring, if any, no more grinding teeth, sleep soundly
and refreshed, like I said, my memory is improved, very minimal leg cramps, hands shaking is under control, IBS is improved, eye twitching of my cousin is less. She used to need Botox injections to control it and so many more symptomatic improvement. Mg is involved in 300 body enzyme processes that lack of it manifests in hundreds of symptoms.. Read the book> it's amazing what you will learn.. Dr. Deans 'The Magnesium Miracle. Search on YouTube re Magnesium. Its an important element also related to thyroid issues. The thyroid is a very complicated organ it affects and regulates all our body organs, hormones-
Lack of Mg also has effect on auto immune diseases. I think I reached the protective level of Mg at 6 months. No more rashes popping on me from out of nowhere- that I had for 3 years. ..
Sodium Ascorbate as powder can be just stirred in water. Its tasteless. I just prefer taking it as capsules.
Too much Calcium can cause urinary incontinence accdg. to google.
Mg will regulate how much Ca will go to the cells, Vit D3 2000 IU will push it into the cells where its needed.
Vit B complex 100 mg is also necessary with Mg. Did you hear ? They have proven that Vit B could protect from Alzheimer's .. I heard that on Fox News. That's plenty. Hope it helps.
Helpful - 0
Avatar universal
Thanks - I will try the Sodium Ascorbate - I have been taking 1000 mg C + rose hips a day, and it seems to be aggravating my urinary incontinence... ugh. Hopefully the sodium ascorbate will not since it is not as acidic.

Do you recommend taking the magnesium by mouth or transdermally?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Iodine is often contra indicated for anyone with Hashimoto's.  If the thyroid is already damaged iodine will not make start working again.
Helpful - 0
Avatar universal
Hello, I hear you, re your thyroid results. It will help a lot if you read up on Dr. Brownstein's Thyroid Book, as well as his Iodine book.. Traditional MDs won't/don't go so much into nutritional supplements. Its not part of their training.
The RX you got are pretty much the same that Dr. Brownstein  would advise except for adding Vit C in high doses up to 4000mg per day. I use Sodium Ascorbate as its the non acidic Vit. C.. I also encapsulated these myself as they are expensive if you can find them in capsules.. Also Magnesium combined with Calcium pills is not enough. Elemental Magnesium daily requirement is 320 to 400 mg per day.
"The Magnesium Miracle" by Dr. Dean is one excellent book for everyone's health.
He (Dr. Brownstein) also has a regimen on Iodine which is very helpful. According to his book, Iodine deficiency and then Magnesium deficiency (from Dr. Sircus' book "Transdermal Magnesium" could lead to auto immune diseases. It helps a lot to be informed. I am a retired RN and none of these were included in our curriculum.. Now I have lots of time to research my own health issues- and they are similar to yours. The books are easy to read. Wish you well...
Helpful - 0
Avatar universal
My only other recommendation is to demand that you start being tested for Free T3 instead of total.

if not already explained. Total T3 is an outdated test of little value.  Free T3 is the actual hormone that your body uses at the cellular level.

Both T4 and T3 can be in two different conditions.  One is were the hormone becomes attached to a protein molecule.  In which case it becomes completely useless to the body and unusable.  the other state is unattached or "free" from being stuck to a protein.  ONLY the free hormones are used by the body.

The total test counts BOTH the usable (Free) and unusable (protein attached) hormones in aggregate.  So without knowing how much or what proportion is actually available for use (free) by the body it is of little value.

Also by testing both the Free T4 and Free T3, each time. With each medication dosage adjustment you can make a deduction of how well the conversion process is working.  Some people have a conversion problem.  In which case you may have to add in a pure source of T3 medication.  

But unless you test for free T3, you can't determine this.

Then there is just simple common sense.  Since ONLY the free T3 is ultimately used by the cells in your body.  Doesn't it just make sense to measure the ACTUAL hormone that is ULTIMATELY used?  DAH!

Unfortunately Dr's are generally not taught this common sense.

I personally am a little apprehensive about a Dr who is apparently trying to dose you based on a goal of TSH value.  TSH is NOT accurate enough to base and optimize dosage.  At least not for most people.

The ultimate try test is you being relieved of symptoms. And the FT4 and FT3 are used as a guide to help with making decisions.  Understanding that frequently symptoms can lag behind blood labs by several weeks. So when getting c lose to the optimized dosage, it makes sense to go VERY slowly.  Sometimes even waiting for several weeks to see what happens.  That is what the labs are really good for in addition to see what amount of increase results from the dosage increase to gauge the size of the next dosage correlated to the symptoms.

Hope that made sense.
Helpful - 0
Avatar universal
My results on 3/31/13 were:
TSH 1.33 (.1 - 5.5)
Total T3 113 (50 - 170)
Free T4 1.1 (.8 - 1.7)

This is after 8 weeks on 25 mcg levothyroxine. Up from results on 2/3/13:
TSH 1.5
Total T3 102
Free T4 0.8

She said we are going to try to get my TSH between .5 and .8, since that was where it was when I was tested a couple of years ago and had no thyroid symptoms. With how they are correlating, I think that will get my Free T4 well within the upper 50% of the range.

She is also testing me for lupus (ANA) because a couple of my joints are swollen and one of my fingers is bent funny... she said that my thyroid numbers don't really account for my fatigue levels but she doesn't mind treating my thyroid since it seems to be helping and I have hashi's, and since my TSH has been trending up over the last couple of years. She wants me to keep working on getting my ferritin and vitamin D higher and to take B12 even though that is now in the upper end of the range, she said it is good for chronic fatigue even if you have good levels.
Helpful - 0
Avatar universal
Thank goodness it sounds like you are on the right track.

Water retention is common and water in the lower legs and feet is common. So with the medication it is probably reducing the water retention and that explains the weight loss as well as the smaller shoe size.

Please post your lab results and reference ranges.  You may be on the right track but you may or may not be optimized yet for medication dosage.
Helpful - 0
Avatar universal
UPDATE: I am now on levothyroxine 50mcg. 25mcg made me feel a bit better but not quite and after labs showed only minimal change, she put me on 50. I am relieved that I am no longer incapacitated by fatigue -- still tired but I can function now. My feet actually went down a full size too after starting the meds, how strange is that? Not so cold anymore and I have lost 4 lbs, and my skin is not so flaky and dry. Thanks for all the advice -- I'm looking forward to feeling all the way better!
Helpful - 0
Avatar universal
Actually DEMAND and by US law the Dr's are REQUIRED to give you your actual test results.  So ask for them in writing and make sure you include the reference ranges.

As noted above in all liklihood they are just telling you that you are "normal" simply if the lab test fall SOMEWHERE within the reference range.

Also as noted above "somewhere" within the range is NOT, NOT, NOT good enough for many if not most people!!!!!!!!

Please note that most people don't feel well until both their FT4 and FT3 are AT of ABOVE the middle of the range.  In particular FT3 may need to get to the UPPER 1/3 (66.7%) part of the range in order to feel well.  

But many Dr's even if you are bouncing on the very bottom of the range will declare you "normal".  That is total BS for many people and may be for you as well.

What symptoms are you still having?

Going Gluten free for Thyroid is nothing proven one way or the other from what I've read here.  Some people they feel better going gluten free but is more digestion related rather than Thyroid related.  Can't hurt to try but don't expect miracles from going gluten free for thyroid.
Helpful - 0
Avatar universal
Well, my free T3 came back normal - so now I wait until March to do the next test. I don't understand how I came in with thyroid issues, they found I have Hashimoto's, but my hormones are supposedly not low. It was the symptoms of low hormones that caused me to go in to the doc in the first place. So I am taking supplements to correct my deficiencies and to try to help my body make the thyroid hormones on it's own (Rx iron, B12, selenium, Cal/Mag/D3, omega 3's) plus I have stopped eating gluten and dairy. Hopefully my body will get it together once it has what it needs. Still waiting on some testing to figure out why IGF-1 is high.
Helpful - 0
Avatar universal
Much appreciated. I will keep on working on getting treatment - if there is anything I have learned through my last autoimmune disease, it's that doctors want to put a square peg into a round hole and that I have to be as educated as possible and be my own advocate.

In the mean time, I will supplement, exercise, and do what I can. Thanks again for taking the time to respond to my post.
Helpful - 0
Avatar universal
I have gained much if not most of my knowledge by reading and learning here on this forum list.

Probably the best web site I have found is: The National Academy of Hypothyroidism.   Here is the link: http://nahypothyroidism.org/

The entire series of articles tabbed along the left side are outstanding.  They are referenced to extremely credible medical studies etc and thus can be used pretty persuasively with Dr's.

The "stop the thyroid madness" site is also informative in the general sense. But that site in particular really pushes natural dissected thyroid medication. There is nothing wrong with that medicine but it is not the only possible solution.  So keep this in mind as you use this particular site.  It is thought provoking.

This is also a pretty good site: http://www.hormonerestoration.com/Thyroid.html

If you really want a Thyroid 101 tutorial sort of thing. I actually wrote a long document about that. It sort of just came together as I was cutting and pasting things for me to remember and then I had to put things into my own words to understand what was going on and also try to explain to my wife in a way she would be better able to understand.  Then I just refined it over time.  Like I said it is long like 13 pages in MS Word format.  If you want it, you can Private Message me and we can exchange e-mails off line of this forum as it is far too long to cut and paste.

Understand that I'm not a Dr. I'm just a person who self educated myself on this to help myself and my wife with this "thyroid thing".  I do not want to misrepresent myself in any way.
Helpful - 0
Avatar universal
As I stated above. people who have hypo symptoms while still in the normal range usually need to be further up in the range. Which makes perfect logical sense. However Dr's seem to not understand perfect logical sense. They seem to only look at your results and if they are "somewhere" within the normal range they ignore anything else.

As noted many people find the better target to begin to shoot for is:

Many people here report that just being "somewhere in the range" is NOT good enough.  In fact they need to be WELL up into the range meaning at or above 50% of the range.  The better target that seems to work for many people is to obtain BOTH of the following:

1) Free T4 (FT4) to be in the MIDDLE of the range (50%) or slightly higher

AND- that means in addition

2) Free T3 (FT3) to be in the UPPER 1/3 (66.7%) of the range

You do not have a Free T3 test. But your T3, Total 100 (50 - 170) ng/dL which is 41.6% of the range.

Your test result for Free T4 1.0 (0.8 - 1.7) ng/dL which is only 22% of the range  Significantly below the above target of 50% or slightly higher

Your TPO AB 79 (< 35) IU/mL does indicate that you have Hashi's as the test is elevated above the top of the range of 35 or less.

Hashi's really isn't that big of deal so don't get freaked out.  It is common.  All it really means is that as the progression of attack on the thyroid occurs, you will periodically have to increase your medication dosage to make up for the loss of hormone the thyroid gland produces.  It also may make it a bit trickier to fine tune the dosage to make you feel well. As you slowly step up the medication dosage, the disease makes the gland less efficient and thus you can be chasing behind the curve and not catching up.

Your D3  could be higher.  

I would encourage you to get blood testing again and DEMAND Free T4 and really, really push for Free T3.  I think also getting tested for Vit B-12, iron & Ferritin again would also be good.

If your Dr refuses.  Try to find another Dr who will.

Before I forget, what are the symptoms that you are experiencing?
Helpful - 0
Avatar universal
I forgot to finish my thought... that happens a lot lately! I like this doctor, but I am used to needing to poke and prod and down right demand in order to get proper care. It is frustrating to say the least. So you think my T4 is low? She said it was high, which doesn't make any sense to me at all considering that it's right near the bottom of the range.
Helpful - 0
Avatar universal
Thanks for the info! The following tests were done 11/7/12 at 8 a.m.

Free T4 1.0 (0.8 - 1.7) ng/dL
TSH 0.95 (0.10 - 5.50) uIU/mL
T3, Total 100 (50 - 170) ng/dL
TPO AB 79 (< 35) IU/mL
VITAMIN D, 25-HYDROXY 29 (20 - 79) ng/mL
Parathyroid hormone intact 21 (10 - 65) pg/mL
Calcium 9.7 (8.5 - 10.3) mg/dL
HGH 2.5 ( 200 pg/mL

Last 2 IGF-1's were both right at 400, I am waiting for the results of the third.
TSH (from a month ago) 1.43 (0.10 - 5.50) uIU/mL

I like this doctor, she at least is not treating me like there is nothing wrong like my primary did at first. I already have a history with autoimmune, I was paralyzed years ago by ADEM and have had a long and incomplete recovery. I am a little upset to hear that my immune system is turning on me again, but not surprised and ready to do what it takes to fix. Do you know if taking fish oil will help slow the progression?
Helpful - 0
Avatar universal
I'm impressed with your thyroid knowledge, what have you been reading?
Helpful - 0
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