Graves disease with normal labs, is it possible

[mcurtis]

My Thyroid Peroxidase Antibodies are 441 the should  be below 35
my Thyroid Antibodies are 91 the norm is below 20
My TSH and Free T4 and T3 are normal
I am having all the symptoms of graves disease
My thyroid ultrasound showed a goiter and some small nodules.
I am having sinus tachycardia which a cardiologist gave me Cardizem to keep my heart rate down.  I am having all the symptoms of Grave's disease but the endocrinologist thinks I am having mental problems.  Has anyone else been diagnosed with Graves disease with normal TSH and T3 and T4?

[gimel]

We can better answer your question if you will tell us about the symptoms you have, and also post your thyroid related test results and reference ranges shown on the lab report.

[Laurie_N]

Can you still have grave disease:hyperthyroidism symptoms with normal thyroid lab work ?

[gimel]

Please give us a bit more background info.  Have you ever been diagnosed as hypothyroid?  Are you currently taking any meds or supplements?  If so, please list them.  Do you have any other symptoms?  Please post the reference ranges for those tests, as shown on the lab report.  

[suzannelouise]

Thank you goolara for your time taken! I appreciate it very much. Also no, a FT3 was never ordered. Ok, well tomorrow is my next endo appointment. I am a bit nervous since I haven't seen him since I canceled the RAI appointment at the hospital. I am worried at what he is going to say but like you said, I think it is time to find another endo anyway! I believe I understand a little more on the TSI now and just what it is. That will help me tomorrow. I also just bought a copy of Elaine Moore's book on Grave's disease and she says pretty much the same as you have here. Even to the point that not everyone with Grave's disease has a TSI reading above the lab ranges. I honestly don't know what anyone like me would do without these forums! I would be lost I know. Thank you so much again. Good luck to all of you out there who are going through this and finding that so many endocrinologist just either do not care or are too busy to study thyroid disorders! It really bothers me that people on these forums are so much more educated on thyroid disease than the doctors out there!

[Zman712]

Can anyone interpret these results?

Quote from: NickZ on November 12, 2016, 04:58:43 pm
TSH is 2.55
T4, free is 1.17
T3, free is 3.1
Reverse T3 is 9

All within range and normal according to Endo.

[Zman712]

I have had heart pounding at night, chronic insomnia and fatigue, anxiety for 11 months.

[goolarra]

It's tricky to interpret a TSI test.  In most tests, they give a reference range, and if you fall into that range, your results are considered "normal".  For example, your FT4 reference range is 0.8-1.8, and now that your FT4 has fallen to 1.7, you are in range.  The reference range for TSI, however, is "< 140%".  So, one would think that if your result is 89%, it would mean you don't have Graves'.  The fact of the matter is that people who don't have Graves don't produce TSI and have TSI of < 2%.  The "< 140%" baseline is where most people start showing symptoms, but that's subject to individual reactions.  So, you have an autoimmune thyroid disorder at the very least.  If you are having hyper symptoms and your FT4 is out of range, that pretty much translates to Graves' (in my opinion).  

Did they also do an FT3 test?  They should have.  FT3 is the active form of the thyroid hormones.  It usually runs higher in its range than FT4 is in its range.  So, if your FT4 is now 1.7, there's a good possibility that your FT3 is still above range.

Your FT4 is now 1.7, but you have to understand that that is a MEDICATED level.  Methimazole interferes with the production of thyroid hormone.  If your TSI is still high and you come off of methimazole, your FT4 is likely to go right back up again.  In predicting remission, they usually look for a TSI of < 20% before they feel meds can be safely withdrawn.

Your endo isn't giving me a lot of confidence (and it doesn't sound like he is you, either).  He should have tested FT3, and I don't agree with his interpretation of the TSI and he hasn't explained your options to you fully.  I'd definitely get a second opinion before committing to RAI, which will make you hypO for the rest of your life.  Many people control Graves' for years with meds.  It's only when meds no longer work that a "permanent" solution is sought.

The eye condition you refer to is TED (thyroid eye disease).  Since you've had symptoms for many years, you really should see an eye doctor who knows how to diagnose TED.  

I'd find another endo.  You can call endo's offices in your area and ask (probably through a nurse) how much of the endo's practice is thyroid disease.  Many endos only want to treat diabetes and really don't keep up on thyroid.  It's a big step (RAI) and you should be comfortable with it before you do it.  Since you feel better on the methimazole, you have the luxury of some time to ecplore the possibilities.  

[suzannelouise]

I feel like I am just about to give up. I was diagnosed 3 months ago with Grave's disease by my PA. She referred me to an endocrinologist that I am actually afraid he is going to make me worse! I need some opinions from you out there who may be able to give me some info. that I can use at my next endo. appointment. First of all I have had this problem for many many years. A constant battle with anxiety, rapid and pounding heart beat, pulse rate over 100 even at resting, hair loss, high blood pressure, constantly tired, social disorders, unable to work due to fear of people and I shake so much that trying to get through an interview is out of the question, weight loss to extremes then weight gain, loss, gain etc. I worry to excess constantly with fears of people I love being hurt or killed, insomnia, racing mind when trying to sleep, profuse sweating and I could go on and on. In the past I have seen many doctors who have told me it's because I have 3 children and I am just a nervous person, to it is pretty much all in my head. No one ever tested me for anything. Now at 55 years old I found a PA who actually ran blood tests. Here are the results:
TSH            <0.02  (reference range 0.4-5.5)
Free T4        3.1    (reference range 0.8-1.8)
TSI               89      (baseline              140%

She diagnosed Grave's disease with these results and my symptoms. I since then have seeing the endocrinologist. The first thing he did was reorder a TSI because he says my TSI reading does not show Grave's disease. He also ordered an uptake test. The results of the TSI were still under the baseline. The uptake test showed 35%. He then ordered another uptake test which I did not want to do because of having to swallow the low dosage RAI pill. I however went ahead and had it done the second time because he wanted to see the scan. He then did a thyroid ultra sound and discovered many nodules (too many to count) was what he said. He did biopsy of 3 of the numerous nodules. I have results of the most suspicious one so far saying negitive for cancer. Still waiting on the other 2. He has scheduled me for an RAI ablation now and has told me I do not have Grave's disease. My TSI is not showing Grave's even though everything else is pointing to it. He seems confused and therefore I am completely confused and worried. I was supposed to go in and have the RAI ablation done 4 days ago but called the hospital and cancelled it. I just am not comfortable having it done for many reasons and one being I don't think this endo. knows much about thyroid disorders and am not comfortable with any required treatment after an RAI ablation! I just have a feeling that my next appointment which is in 2 days he is going to insist on the ablation. I have (for 3 months) been taking Methimazole 10mg twice per day and Metaprolo (beta blocker) 25 mg twice per day. I feel better than I have for as long as I can remember. My free T4 has lowered to 1.7 which is now at the high end of the reference range. My TSH dropped slightly now to <0.01. The endocrin. did not cut my meds either. I am still on the dosage of Methimazole as I started on. I think he should be cutting my dosage sine I believe my T4 is in optimal range. Sorry I am writing so much but another concern of mine is for 30 years I have had eye problems (pressure). My eye doctors that I have seen throughout these years always say they are concerned with pressure behind my eyes. They always suggest I see a specialist. I have never been to a specialist yet one of the eye doctors ordered some kind of test that showed slight optic nerve damage yet no glaucoma. I wonder if I have the grave's disease eye disorder as I read about it online. That scares me even more to ever have the RAI ablation in fear it will worsen my eye problem. I really need to know if it is possible to have Grave's disease if your TSI is only 89? If this is not Grave's disease then possibly my eye disorder is not Grave's disease related. Should I trust my endo. and believe I do not have Grave's disease? I am just so confused as to what to do. Thank you very much for any help you may be able to give me.

[goolarra]

I've heard the saliva test is the only one worth doing, too.  With it, you get four separate readings throughout the day, so you see where it might be too high, balanced out by too low, which doesn't show up on any test that averages.

Has anyone suggested you take thyroid replacement hormones to see if that helps?  Your numbers are so low.  I'd certainly ask for a trial dose before I headed off to a psychiatrist.

[mcurtis]

The 24 urine test my endo had done came back completely normal.  I have heard that the saliva test is more accurate.  With all of these test I am beginning to think maybe I have an anxiety or panic disorder.  However, sometime my whole body is trembling and I am not anxious at all (weird or maybe it's caused by the Xanax).  I have been taking Xanax and Cardizem to control all my symptoms.  The naturopathic doctor said the results of the test he ordered take about 2 weeks to get the results  which means hopefully next week I will know if I need to head to a psychiatrist.  I was really hoping I wasn't having mental problems, maybe it's time to give up the search.

[goolarra]

I tried to get a really good site for you to read about TSI.  Unfortunately, the last few times I've tried to access it, I couldn't.  To quote from my printout of that site:  "While the normal range is <130% activity, individuals who are normal do not produce TSI and have levels <2% activity.  Individuals with levels between 2 and 125%, which indicates thyroid autoimmunity, do not generally develop symptoms of hyperthyroidism until levels rise."

Hashitoxicosis is a possibility...the symptoms are very similar to Graves' symptoms.  In initial stages Hashi's can be characterized by swings from hypo to hyper.

Adrenal fatigue is often associated with hypothyroidism.  When we become hypo, the adrenals tend to step in and try to make up for the lack of thyroid hormones by boosting metabolism.  This helps the body cope for a while...until the adrenals are no longer able to keep up, and we have adrenal fatigue.  You had mentioned you were having adrenals tested.  Did that ever happen?

[mcurtis]

So the TSI norm is 2% or lower?  I can't find any data anywhere explaining this test.  I am seeing a naturopathic doctor his first instinct was Hashitoxicosis.  Before all these horrible symptoms, I do think I was hypo, I could barely make it through the day without laying down at some point, so I started drinking coffee to help me push through the day.  I am so miserable and scared.  I wake up a lot at night terrified.    The doctors have me on Xanax for now, and I don't want to be taking it but I can't seem to keep my anxiety under control without it.  I have three little kids and don't want to be addicted to drugs.  
The endocrinologist I saw seemed to think that I just have a predisposition for Grave's disease but I don't actually have it.  Have you heard of adrenal fatigue, I am wondering if I have some sort of combination of problems.  

[goolarra]

My reading has indicated that people who don't have Graves' disease don't have TSI antibodies (TSI should be less than 2% in people without Graves').  The range limit (140) indicates how high antibody levels can usually get before symptoms start appearing.  I think you're in a gray area...some doctors would say you have Graves' (or a "predisposition"), others would say you don't.  With all the usual disclaimers:  I'm not a doctor, just a fellow patient, etc, I think you have both.

One disease usually predominates, and that's the one that's treated.  Looking again at your FT3 and FT4, both are very low, and I think you are hypO at the moment.  It would be very unusual for levels that low to cause hyper symptoms.

If I were you, I think I'd get a second opinion from another endo.  While I don't think it's always necessary to be treated by an endo for thyroid disease, I think your complicated situation would make it advisable.  An enlightened endo will look beyond your low TSH to your low FT3 and FT4 and will be willing to treat.  With your high TPOab, TGab and somewhat elevated TSI, your doctor should not be dismissing you as a "mental patient".  Obviously, something is going on with all those antibodies running high.

Have you had the opportunity to discuss your TSI results with your endo yet?

[mcurtis]

Okay the TSi is 36 the range is below 140...any ideas

[mcurtis]

I feel like I"m reading and everything on the internet and trying to figure it all out myself.  My doctor and my endocrinologist have written me off as a mental patient.  I still am waiting on my results of the TSI.  I'm starting to wonder if they are right and that I am simple mental ill.  I hope that is not the case.  

[Red_Star]

I've been to more doctors than you can poke a stick at.  The rheumatologist i saw recently congratulated me on diagnosing my juvenile pernicious anaemia (100 per million) and Hashimoto's thyroiditis. After seeing so many doctors with hundreds of years of study and clinical experience between them, there is something very wrong in medicine when i am the one making the diagnoses!

[mcurtis]

You must be so frustrated, I feel your pain.  I feel like I keep going to different doctors but no one is finding the source of my symptoms.  

[Red_Star]

LOL. Okay so when i decide to go for my "first" TSI test i'll have it fully written out.  I can see how TSI and TSH can be mistaken but TSI and serum Tg? Uhhh ;)

[mcurtis]

Thank you for taking the time to answer my questions.  You are more helpful than the 2 endocrinologist I've seen so  far!  i will let you know asap what my TSI results are and what you think!

[Barb135]

Maybe you need to write that out, rather than use the abbreviations; maybe they will realize it's not TSH.    lol

[goolarra]

"Not even sure i'll request a third TSI test."  No, I think you're still requesting your FIRST TSI test!  LOL  Pathetic, isn't it?

[goolarra]

From what you've had tested so far, it looks to me more like you have Hashi's than Graves'.  Elevated TPOab and TGab usually indicate Hashi's.  However, both of those can be somewhat elevated with Graves' as well, and it's rare, but possible, to have both Graves' and Hashi's.

Also, your FT4 is quite low in the range, which indicates hypOthyroid.  Your FT3 is even lower in its range than your FT4 is in its.  All this indicates hypO.  Your TSH is on the low side, but TSH is a very poor indicator of thyroid status since it can be influenced by any number of variables.  Keep in mind that TSH is only a signal from your pituitary to your thyroid telling it to produce more thyroid hormones...TSH in and of itself causes NO symptoms.  

It's possible to be diagnosed with both Hashi's and Graves' with "normal" FT3, FT4 and TSH.  Especially in the case of Hashi's, it takes the antibodies a while (can be months or decades) to destroy enough thyroid function to cause FT3, FT4 and TSH to go out of range and for symptoms to appear.  In the case of Graves', if TSI isn't too high, labs may not go out of range and/or symptoms may not appear.

Nodules are often present in both of these diseases.  If they're small, they're usually just monitored for changes.  Many of us have them.

Early stages of Hashi's, which is basically a hypOthyroid condition, can be characterized by swings from hypo to hyper.  So, the TSI will help you sort out what's going on there.  It gets even more complicated because many symptoms "cross over" and can be caused by either hypo or hyper - any imbalance in thyroid hormones will bring them on, e.g.

Heart Palpitations
Chest Pain
menstrual cycle changes- shorter periods
insomnia, especially inability to stay asleep all night can be hypO
Toe nails keep cracking
tremors
anxiety
panic attacks
moody
weight loss - some people lose hypo or hyper and some gain hypo or hyper
start trembling in stressful situations - that's probably adrenalin  
episodes of extreme weakness, feel like I’m going to faint

Most feel that there is an inherited component to autoimmune disease, but we often see both Hashi's and Graves' (as well as lupus, RA, PA, type I diabetes, etc.) in the same family.  So, it seems the propensity to develop autoimmune disease is passed down, rather than the specific disease.  

Once you get the results of your TSI, you'll have a much better idea of what you're actually dealing with.  If you'd like, post your TSI results, and we can help you interpret those.

Good luck with the tests!

.

[Red_Star]

I have quite a few hyperthyroid symptoms but i also have hypothyroid symptoms too.  I have requested a TSI antibody test twice and it must of been swap a thyroid lab day lol as i received back thyroglobulin serum (which was high actually due to hyperthyroidism - was in the middle of hashitoxicosis at that point) and another TSH test.  I have pretibal myxedema and i've read that is due to TSI antibodies. Not even sure i'll request a third TSI test. May come back with TSH again.  Like i need another TSH test pfft lol.

[mcurtis]

My symptoms seem to get much worse when I eat high sodium foods, which I am guessing is the iodine

[mcurtis]

My Thyroid Peroxidase Antibodies are 441 the should  be below 35
my Thyroid Antibodies are 91 the norm is below 20

Free T3 2.41 range is (1.80-4.70)
Free T4 1.14 range is (0.89-1.76)
TSH 0.58 range is (0.400-4.00)

I am having my adrenals checked and TSI on Monday.

My primary care physician swears I have Grave's disease but the endocrinologist just says I have a predisposision because my mother had Graves. He said that my labs are normal.  He said I may have cancer but the nodules are to small to biopsy.  

My symptoms
Heart Palpitations
Chest Pain
menstrual cycle changes- shorter periods
insomnia
Toe nails keep cracking
tremors
polydipsia - really thirsty during panic attacks
polyuria- peeing a lot during panic attacks
anxiety
panic attacks
moody
weight loss
start trembling in stressful situations
episodes of extreme weakness, feel like I’m going to faint

[goolarra]

Have you had a TSI (thyroid stimulating antibodies)?  TSI is the definitive test for Graves'.  Has the doctor diagnosed you with Graves'?

Please post your actual FT3, FT4 and TSH resilts with reference ranges (they vary lab to lab and have to be posted with results).

Please list your symptoms.