Who Has Thyroid Issues

[darlindeb25]

I'm sorry, I lost this thread for some time, I wanted to post my results in here--the doctor told me they are all within the normal range--you tell me, please!

TSH 1.97

T4, Free 1.1

T4, Total 9.3

T3, Uptake 27.2

with the T4, Free Calculated 2.53

T3 Total 140

Everything was in the normal range except my red blood cout was a little high--I did test negative for Lyme Disease too.

Thanks, Deb

[georgie]

TSH 1.97

T4, Free 1.1

T4, Total 9.3

T3, Uptake 27.2

with the T4, Free Calculated 2.53

T3 Total 140

Everything was in the normal range except my red blood cout was a little high--I did test negative for Lyme Disease too

Deb, I'm not a Dr but that TSH looks a bit high. Its only .03 away from 2, and my Dr treats all TSH> 2 as HypoThyroid.

But I notice that Thyroid Antibodies haven't been tested. You need Thyroid Antibodies tested - cos if you have those you have autoimmune Thyroid, and all the other labs get changed by that. Once you have autoimmune thyroid - that overrules your other tests as the levels of those change all the time depending on how the Antibodies attack.

Autoimmune Thyroid is linked to other autoimmune diseases like Celiac .....

[Queen Serenity]

I have Hypo problems. I was diagnosed in 2004. gluten-free since 1995. It's 100% related!

Vicki

[cause&effect]

Well I went to my third Endo appointmeny today which did not result in any positive surprises. My last set of test show values falling in the normal range, so my Doctor said that she can not provide any prescription medication support for my pronounced thyroid and adrenal insuficiency symptoms due to legal and medical restriction. I expected this and discussed with her my self treatment following the guidelines on Dr. Rinds web site. She is behind me on this and said the over the counter supplements may well help.

On a more positive note I have started takeing an adrenal supplement two weeks ago, at a dose which supplys 20mg of hydrocortisone spread out thru the day. This has shown a more than 1/2 a degree average tempreture increase on my daily tempreture chart. I'm deffinately feeling it too, not only feeling warmer with temps peaking at 98.6 but also better mental alertness, less muscle fatigue, a slight energy increase and a slight but noticable improvement in digestive tract and urinary tract function. The next step will be to determin which thyroid supplement I will use.

So since seeking further treatment from a Holistic or Naturopathic doctor that would not be covered by insurance is beyound my budget right now, I will continue to determin my own course of treatment as I have done for the last six years.

[loraleena]

Hey Georgie,

I started Isocort a few weeks back. Have noticed my temps are up a bit and my hypoglycemia is better in control. I seem to be having some nausea that comes and goes though. Is this common??

[georgie]

I started Isocort a few weeks back. Have noticed my temps are up a bit and my hypoglycemia is better in control. I seem to be having some nausea that comes and goes though. Is this common??

Are you taking them with food? Multi dosing ? I have heard of it. There are a few extras in Isocort which upset a few. Also they are not as consistent batch to batch as regular hydrocortisone. If they are working for you I would try to find a Dr that understands adrenal fatigue. You shouldn't stay on Isocort too long due to the echinaecea in them I have been told.

[Random Guy]

hey there,

i have graves and hyperthyroidism

diagnosed with that stuff about 8 years ago

my endo has been trying to talk me into radioactive iodine for 7 years

i've never been convinced

my thyroid tests came back very close to normal a few months ago

i'm down to 5 mg (1/2 pill day) mathamizole (tapazole)

in 2 weeks i have another endo appt

i know i'm going to test normal

the last 2 times i went into remission for the thyroid, it didn't last

we'll see this time

i've been gluten free for 1 year

i don't want radioactive iodine

-rg

[happygirl]

Add me to the list of some sort of thyroid problems: normal TSH/T3/T4, but producting autoimmune antibodies (recently discovered).

[georgie]

Add me to the list of some sort of thyroid problems: normal TSH/T3/T4, but producting autoimmune antibodies (recently discovered).

There is a few of us now Its the Antibodies that will damage your thyroid and shut it down. Keep a watch on your health and levels. The current idea is to suppress the antibody activity and Armour has the best record for that. But Armour won't work properly if you have adrenal fatigue. So its all a bit of a saga But it can be controlled.

[georgie]

i don't want radioactive iodine

Read as much as you can. Have you been to Open Original Shared Link

They have forums like this , and one is about Rai and Thyroid.

[outOfThisWorld]

I also may have thyroid issues but these are yet to be confirmed as I have only had TSH and Free T4 tested.

In both cases Free T4 was very similar however in May 06 my TSH was 1.170. I have just been tested again and my TSH was 2.110. Although I am not sure I don't know that it should move this much over 7 months?

[loraleena]

I work with Dr. Lowe who is very knowledgeable. This is all they do. They run the center for Metabolic Health in Colorodo. They mainly use Isocort. I am going to check in with them regarding the nausea and echinacea.

[cccquilter]

I am new to this forum; I was directed here from a thyroid forum. I have been sick my entire life; as a child I had constipation all the time; gained weight easily, for which I was nagged about being fat, had digestive problems, fatigue and insomnia from a very young age, dry skin, and other problems. I have been blown off by doctors pretty much as all in my head. One doc did diagnose me as hypothyroid, but put me on synthroid, on which I never did well. I was resigned to living half a life until I found the thyroid boards and woke up. I have a new doc that (finally!) diagnosed me with Hashi's based on the antibody test. I have wondered about celiac, but every site mentions losing weight, not gaining it, until some said that gaining weight can be a sign also because you are eating the wrong foods and not digesting properly. I need more info and what I should ask my doc to test for. I will do what it takes to become something I have never known: healthy. I have asthma, Fibromyalgia, hereditary kidney disease that causes stones, IBS, hypothyroidism + hashimoto's. I know know from looking back that I was hypothyroid as a child, but no one, especially not the doctors, caught it. I am angry that this could happen; it prevented me from having a normal life. I am 53 soon to be 54 and need all the info I can get.

Cathy Clark

Chicago, IL

[tiredofdoctors]

Hi Cathy -- welcome to the board.

Hashimoto's is a very common co-morbid condition with Celiac. I started with a goiter when I was 13. I always had normal TSH, T3, T4 levels, but no one ever checked my antibodies. I had to change endocrinologists, and the new guy told me that you didn't have to take synthroid to control the size of a goiter. I ended up in the psychiatric unit because I was so depressed. Of course, my blood pressure was also 80/40 and my heart rate vascillated between 40 and 45 bpm. My TSH was 12.5. The psychiatrist on the unit took one look at my medical, told me I didn't have to participate in the "therapies" to be released -- I just had to find a GOOD endocrinologist. I told him who I was going to and he said, "Like I said, you need to find a GOOD endocrinologist." I told him about the insurance issue, and he said it was worth paying cash to go back to my other endo.

Ends up, that's when I converted to Hashi's. My thyroid had grown to three times the normal size on the right, four times on the left, but it also had wrapped around my trachea in the back, and down beneath my breastbone. My (new)(former)! endo did an ultrasound -- I had hemorrhagic cysts in it -- a definite precursor to thyroid cancer. I had a thyroidectomy, and it has taken two years to get my levels consistent.

I asked about Armour thyroid. She said that she isn't against using it, but she noticed that with her patients, they had a great response initially, but about five to six months afterward, they were feeling tired, and had decreased T4 levels -- and she had to supplement. She said that she had to bump it up several times. Twenty years later, there has just been a study published that it appears that the results she had experienced with her patients are pretty common. Not that Armour thyroid isn't good -- she said that it IS. It's just that, in some patients, it's hard to regulate.

I'm still on the synthroid -- and have had two consistent checks now.

I guess the reason for my response is to let you know you're not alone. It is so common in celiacs. It also appears that it is more difficult to regulate in celiacs. I'm a neurologic celiac, so you would think that I wouldn't have the same issues that GI celiacs have with absorption issues. I think it's just our make-up. For whatever reason, we just don't metabolize medication the same way that non-celiacs do.

I wish you luck -- and success. Keep getting in your doctor's face. Make appointments, call, whatever it takes. If you don't get results, or you don't care for the doctor, in the words of my endocrinologist, "FIND ANOTHER. DOCTORS ARE A DIME A DOZEN. FIND ONE THAT LISTENS TO YOU." Even SHE knows how it is . . . . . . !

Take care of you,

Lynne

[darlindeb25]

Each time I read and reread these threads, I see something new! The more I learn, the more guestions I have. I have been researching adrenal fatigue and now, because of this thread, I am researching Wilson's Syndrome. Doctors are not Gods and I realize we have to pick through them to find the few good ones. Are any of you on Long Island, any suggestions of good docs here?

Georgie, I am not sure if I ever answered your guestion about antibodies. I had to beg to have the test done and it came back 69.9 with normal being <35. The endo totally ignored everything.

[mftnchn]

Hi, add me to the list. I was first diagnosed with low thyroid in college, took synthroid for a couple of years. Then nothing, until I was thirty. Since then have been on varied doses of Armour Thyroid, 20 years or so.

I'm gluten sensitive, Gluten-free Casein-free for a month. Haven't got the opportunity for blood tests and biopsy in my location, so won't likely get a firm diagnosis of celiac.

I wonder if my thyroid dosage will change eventually.

[cccquilter]

I am left still wondering if weight GAIN and not weight loss can be a sign of celiac. I have heard that it is, but all the Celiac sites I visit talk about weight loss. I do have a GOOD doc now, but he still needs educating, and I am doing that.

Also, the fact that some do not do well on Armour can be because of adrenal fatigue issues. It says that right on the Armour website and in the brochures. Docs don't take the time to read and educate themselves on this very valuable medication. It contains ALL the thyroid hormones plus calcitonen for the bones. Did any doctors every tell you that you need to up your mineral and vitamin C intake with synthetics? It is right in the literature. Synthetics are bad for your heart and bones unless you take extra minerals to offset.

Cathy C.

Hi Cathy -- welcome to the board.

Hashimoto's is a very common co-morbid condition with Celiac. I started with a goiter when I was 13. I always had normal TSH, T3, T4 levels, but no one ever checked my antibodies. I had to change endocrinologists, and the new guy told me that you didn't have to take synthroid to control the size of a goiter. I ended up in the psychiatric unit because I was so depressed. Of course, my blood pressure was also 80/40 and my heart rate vascillated between 40 and 45 bpm. My TSH was 12.5. The psychiatrist on the unit took one look at my medical, told me I didn't have to participate in the "therapies" to be released -- I just had to find a GOOD endocrinologist. I told him who I was going to and he said, "Like I said, you need to find a GOOD endocrinologist." I told him about the insurance issue, and he said it was worth paying cash to go back to my other endo.

Ends up, that's when I converted to Hashi's. My thyroid had grown to three times the normal size on the right, four times on the left, but it also had wrapped around my trachea in the back, and down beneath my breastbone. My (new)(former)! endo did an ultrasound -- I had hemorrhagic cysts in it -- a definite precursor to thyroid cancer. I had a thyroidectomy, and it has taken two years to get my levels consistent.

I asked about Armour thyroid. She said that she isn't against using it, but she noticed that with her patients, they had a great response initially, but about five to six months afterward, they were feeling tired, and had decreased T4 levels -- and she had to supplement. She said that she had to bump it up several times. Twenty years later, there has just been a study published that it appears that the results she had experienced with her patients are pretty common. Not that Armour thyroid isn't good -- she said that it IS. It's just that, in some patients, it's hard to regulate.

I'm still on the synthroid -- and have had two consistent checks now.

I guess the reason for my response is to let you know you're not alone. It is so common in celiacs. It also appears that it is more difficult to regulate in celiacs. I'm a neurologic celiac, so you would think that I wouldn't have the same issues that GI celiacs have with absorption issues. I think it's just our make-up. For whatever reason, we just don't metabolize medication the same way that non-celiacs do.

I wish you luck -- and success. Keep getting in your doctor's face. Make appointments, call, whatever it takes. If you don't get results, or you don't care for the doctor, in the words of my endocrinologist, "FIND ANOTHER. DOCTORS ARE A DIME A DOZEN. FIND ONE THAT LISTENS TO YOU." Even SHE knows how it is . . . . . . !

Take care of you,

Lynne

[georgie]

Georgie, I am not sure if I ever answered your guestion about antibodies. I had to beg to have the test done and it came back 69.9 with normal being <35. The endo totally ignored everything.

Deb, That sounds like autoimmune Thyroiditis to me! Hashimotos is one. I was dx with Antibodies of 34 - my Dr says ANY increased Antibody activity is dx of Hashis. Trace amounts of Antibodies ( 2 or 3 ) may be OK but >20 is VERY suspicious. Have you had an Ultrasound ? I was searching last night on a medical site , and they ALL talked of Antibody activity being dx - not just a range of numbers...And also Ultrasounds.

Sounds like you need a new Dr - Endos are often the worst. Wilsons treatment works for some but the best successes are with Armour used correctly ( treating an adrenal problem if it also exists). I think Armour works best at suppressing the autoimmune attack.

I am left still wondering if weight GAIN and not weight loss can be a sign of celiac. I have heard that it is, but all the Celiac sites I visit talk about weight loss. I do have a GOOD doc now, but he still needs educating, and I am doing that.

Cathy, If you go back to the toolbar on the left you will find the site index. Lots of info there re weight gain and Celiac. There is also a Forum for that topic too. Welcome !

[jerseyangel]

I'm sorry for the stupid question, but which antibodies are you all talking about?

I'm wondering if I should ask for mine to be tested--my last thyroid testing (TSH, T3 and T4) was normal, but I've had borderline readings in the past.

[georgie]

Mine were the TPO Antibodies for Thyroid but there are others.

Open Original Shared Link

Has your Dr tested you ? Mine didn't .....for 30 years all they did was the TSH test. And as that was normal they did no further testing ..... When you have an Autoimmune disease of the Thyroid - the TSH can be normal, or can fluctuate. And some of the other tests can do the same - so that is why its important to test for Antibodies, and also do the observations.

[jerseyangel]

Mine were the TPO Antibodies for Thyroid but there are others.

Open Original Shared Link

Has your Dr tested you ? Mine didn't .....for 30 years all they did was the TSH test. And as that was normal they did no further testing ..... When you have an Autoimmune disease of the Thyroid - the TSH can be normal, or can fluctuate. And some of the other tests can do the same - so that is why its important to test for Antibodies, and also do the observations.

She has not tested me for the antibodies. Thanks for the information--I'm making a note of it and will ask her to include it this time.

[darlindeb25]

My MD ignored my thyroid panel, said it's all normal. Then when I begged for the antibodies test, they called me and referred me to an endo. Obviously my MD thought 69.9 was something that should be checked into. The endo totally ignored the antibodies test. He said that just because my antibodies are a little high doesn't mean my thyroid is effected, just means I am at high risk, then told me to come back in 1 year for a recheck. He did not take any tests other than bloodwork, told me to call on Tuesday and get the results, but said he knows they will be the same as April. Totally wasted trip. He ignored all of the symptoms I had listed and when I read that checklist of what doctors should check, he didn't do half of them.

I am very disappointed. As celiacs and gluten intolerant people, most of you know how long it takes us to get noticed by a doctor to begin with and here I am, going through it all over again.

[cccquilter]

As a thyroid patient myself, I absolutely hate the word "normal" !!!!! You can have "normal" tests and still have multiple low thyroid function symptoms! Doctors just worship that little TSH test, and if you have Hashi's it is totally irrelevant! I have Hashi's and was diagnosed just this year buy a doc who ran the antibody because he had a suspicion. Try reading: Open Original Shared Link where there is a lot of info on low thyroid function, Hashi's, plus the optimal tests for docs to run. If you are paying the doc, then the doc should be running tests that will actually tell him/her something! Normal is meaningless if you have symptoms and feel like crap!

Cathy C.

My MD ignored my thyroid panel, said it's all normal. Then when I begged for the antibodies test, they called me and referred me to an endo. Obviously my MD thought 69.9 was something that should be checked into. The endo totally ignored the antibodies test. He said that just because my antibodies are a little high doesn't mean my thyroid is effected, just means I am at high risk, then told me to come back in 1 year for a recheck. He did not take any tests other than bloodwork, told me to call on Tuesday and get the results, but said he knows they will be the same as April. Totally wasted trip. He ignored all of the symptoms I had listed and when I read that checklist of what doctors should check, he didn't do half of them.

I am very disappointed. As celiacs and gluten intolerant people, most of you know how long it takes us to get noticed by a doctor to begin with and here I am, going through it all over again.

[mftnchn]

Basal body temperatures are what my doc uses to check up as well as the thyroid checks.