[Beth41109]

#1018587

Hello,
I posted first to another thread but I think I should introduce myself on a new thread.
I don’t have a Graves diagnosis yet.

My TSI was first tested when I was about 20 weeks pregnant it was 95. I was in the midst of heart failure.
After my pregnancy I had symptoms of peripartum cardiomyopathy and then at 4 months postpartum symptoms of Dresslers syndrome and I made the cardiologist retest my TSI- it was 99 at that time.
My baby is now about a year old and I’m euthyroid at the moment. (I t3/t4 get tested every 3 months or sooner if I feel I need it)

There are only a few symptoms of Graves I haven’t had over the years…skin-vitiligo prominent hair follicles, weight loss, alopecia etc etc…

I had terrible photophobia in 2007/2008, but the pregnancy seems to have put my eye symptoms into remission. I’ve had some of the less common symptoms…vasculitises with blood clots come to mind…I have osteopenia, I’ve had a bad fracture…

I have pretty bad vision at night, stop signs look gray to me at twilight…I have keratosis in my eyes but I haven’t seen an eye doctor about any of this yet…

Anyway I don’t know what it will take for me to get a Graves diagnosis if heart failure didn’t…I was thinking maybe an eye doctor could give me a diagnosis?

But the symptoms that are currently bothering me are cognitive problems and my rib cage and upper spine/neck…I have dementia like problems with memory and word recall and just attention problems…and I feel like my ribs and spinal column are thinning…it hurts to lay in the bed, like my ribs can’t support my weight when I lie down, and my upper vertebrae kind of slip in ways that are disconcerting…I’ve had bone problems in other places in the past…lower back, slow to stand up straight, an instance where my spinal column seemed to fall off itself, jaw coming unhinged at slightest kiss…

Anyway I was curious if these are symptoms you all have had from your Graves disease or If you think I ought to be looking for a new kind of doctor to get a diagnosis….my internist believes I have Graves but I think she is deferring to the endos at this point…have any of you looked to an autoimmune specialist to get your diagnosis?

Are people with Graves likely to have other autoimmune disorders? If so which ones?
Thanks!
Beth

[Bobbi]

#1065843

I am sorry for what you have been going through. It has to be quite scarey.

To answer your question: A diagnosis of Graves typically comes about in one of two ways (although sometimes someone exhibits both). The first way typically comes with a blood test that shows thyroid levels that are too high out of the range of normal, accompanied by a suppressed (usually non-readable) TSH which is the hormone that comes from the pituitary gland. Thyroid hormone and pituitary TSH are companion hormones — when one rises, the other falls. The second way we get a Graves diagnosis is if we develop Thyroid Eye Disease (TED) — also known as thyroid associated opthamopathy. While the symptoms that you mentioned can occur because of hyperthyroidism (but not the eye disease alone), unless hyperthyroidism is present, Graves will not be considered the underlying cause. So unless you have had abnormally high thyroid levels, your doctors will be looking for another cause for your medical issues.

A second question you had, which is not limited to Graves but can apply to any autoimmune disease: we are told that when someone develops one autoimmune disease, they are slightly more likely than another person to develop a second one. It’s not a guarantee, just a slight increase in probability.

I hope this helps. And good luck finding out what is going on with you.

[Kimberly]

#1065844

Hello – I would definitely review your TSI results with an endocrinologist, as the "normal" range is somewhat misleading for this test. My understanding is that positive TSI *is* indicative of thyroid autoimmunity. (i.e. our own immune system’s antibodies are mistakenly attacking the thyroid). Exceeding the "normal" threshold means that your Graves’ autoantibodies are causing enough stimulation to make you hypERthyroid. Being below the "normal" threshold means that you still have some level of thyroid autoimmunity, but the antibodies are not causing enough stimulation to make you hypER. A truly "normal" person (i.e. with completely normal immune systems) would not show a positive result at all. (By the way, the folks that invented the TSI test generously sponsored our GDF conference last year, so maybe someone else here can jump in with better information!)

Unfortunately, the process of treating autoimmune patients is pretty fragmented according to which part of the body is under attack. Graves’ patients can end up with one doc for the thyroid…one for the skin…and one for the eyes. And then if you have a second autoimmune condition, you end up with a doctor for the kidneys, liver, etc., etc.. Hopefully, you can find a caring endocrinologist or primary care physician who will work with you to get to the bottom of your symptoms — and who can refer you to another specialist as needed.

Best of luck!

Best of luck!

[Beth41109]

#1065845

Thanks Bobbi…thanks Kimberely…

I guess I should have given my levels at the time I was sickest…
My TSH was undetectable…
My serum thyroxine was 17.5 (hi end of reference range was 12.5)

By the time I realized how sick I was I had already transitioned from just left sided heart failure (complete intolerance to any exertion…into right sided heart failure…fluid issues…ascites, pulmonary edema)..it only took me about a week to go from one to both…

A symptom from BEFORE I got pregnant (alopecia) was what tipped off my regular OB to test my thyroid.
She also did a lot of urine and kidney tests because nocturia was one of my main symptoms besides being bedridden, pain in my back (liver probably), headache, flu like symptoms…

My regular OB had never had a HYPER pregnant patient but her feeling was that my serum thyroxine wasn’t that high so she thought the TSH was a lab mistake, all my urine/kidney test came back "normal" according to her judgment, so she didn’t call me…she thought I just had really bad morning sickness…

I found this very ironic because mornings were actually my best time of day…my fever was on a circadian rhythm and my temperature would be normal in the a.m….

She let me languish for a week before iIinsisted that the TSH could not be a lab error because I was the sickest I could imagine being…But she still insisted on re-testing my TSH and she added the FT3 test, before she would refer me on to another doctor…

The TSH was undetectable again and the FT3 was 222 (upper end of reference range was 170)…

The high risk OB she referred me to seemed as clueless about hyperthyroidism as she was because he ordered a bunch more blood tests that had nothing whatever to do with the thyroid. When I asked him why he didn’t pursue the thyroid as the cause of my symptoms he told me I was only "slightly" hyperthyroid and thus my thyroid could not be the thing making me so sick.

I guess I did not have bad hypertension, and my fever was never high in the early part of the day, and in fact it was never really high…I didn’t have any pedal edema because I was so dehydrated and bedridden that my fluid losses were into my abdomen not my extremities…but I did tell them I was too sick to stand for more than a minute or two at a time…

He did point out to me a hand tremor I hadn’t noticed and upper right quadrant pain (I didn’t guard when he pressed there because I didn’t expect it to hurt…I felt my pain in my back) but he thought these signs were slight…he thought I was only slightly hyperthyroid and slight hyperthyroidism is normal for the first trimester of pregnancy…

That is something I have wondered about ever since and I was hoping you all could help me figure out.
I know my TSH couldn’t get any lower so that would indicate my brain thought I was pretty hyper,
but what about my FT3 being 222 (with the high end of normal being 170) is that only "slightly" hyperthyroid as he said?

My understanding is that when someone has a temporary thyroiditis the thyroid spills stored T4, so when a person has a depressed TSH but only a slightly elevated or even normal FT4, but the FT3 is high that is indicative of Graves…

And I’ve read that some TSI antibodies do a better job of molecular mimicry of TSH so some people can be very sick with TSI less than the lab value given as diagnostic for Graves…on my TSI test 125 was listed as diagnostic for Graves…

But the two endos I’ve seen don’t seem to know any of this because they are still leaning towards a pregnancy related thyroiditis…which is absurd since the alopecia prior to the pregnancy was what tipped of the regular Ob to do the initial round of thyroid testing, plus all the symptoms that have been accumulating since I was a teenager…I’m 41 now.

What are your thoughts…have I misunderstood how the TSH, FT4, FT3 levels indicate Graves or thyroiditis?

What about my neurological problems…since I don’t have a Graves diagnosis I think my neurologist is thinking stroke or seizure disorder and I will be having some tests, but I would like to know something about Graves’ neurological dimension before my follow up appointment to discuss the test results.

Any input would be greatly appreciated,
Beth

[Bobbi]

#1065846

OK — you have been or are hyperthyroid. When I was hyperthyroid, demanding a diagnosis, the test that did it wasn’t an antibody test. I know Kimberly mentioned the TSI. In my case — and in lots of others — we were given a thyroid uptake and scan. With this procedure, you take a measured quantity of a minor radioactive isotope of iodine (not the treatment form), and then go sit with your throat in front of a wee geiger counter either a few hours or one day later. The only place in the body iodine goes is the thyroid. So, knowing how much of the iodine isotope you were given, they can measure the amount that made its way into the thyroid. Then, they do a scan, taking images of WHERE the radioactive substance went in the thyroid. This test cannot be done on a pregnant woman, most likely. But from the images the doctor can see how the radioactive iodine spread in the thyroid. Sometimes the iodine comes in clumps, with large parts of the thyroid showing that it is inactive. With Graves, the iodine will be everywhere — all of the thyroid being over-active, not just clumps of it.

While I would vehemently argue with any doctor that indicated someone was only "slightly" hyperthyroid (can someone be only "slightly" pregnant???), I think there were so many different issues going on that the doctor believed something else had to be at work. This, actually, is really important. Very often, we Graves patients will go to our doctors with something wrong, and our blood levels will be tested, and the words "It’s not your thyroid," will emerge from the doctors’ mouths. Those words are most often a sign that the doctor has figured out what ISN"T going on, but has ceased to try to figure out what IS going on. We do get other illnesses, even if we have Graves. So having a doctor that recognizes one problem, but goes on to try to figure out if there is something more at work, might be helpful.

Yes, it is thought that the antibodies we develop when we have Graves, attach themselves to the TSH receptor in thyroid cells and mimic the action of actual TSH. So the cells think that they are being called upon to create more hormone. The real TSH is being blocked from the receptors. That is one current theory. But what level of these antibodies is required to make someone ill is something I have no knowledge of. A friend of mine — a research MD in fertility and immunological issues — told me once, long ago, that she had found a percentage of the patients who came to her had these antibodies, but their thyroids still performed within normal range. When it comes to the antibodies, there are still lots of unknown factors.

Tremors was one of my symptoms prior to my Graves diagnosis. In fact, it was a neurologist who took stock of the symptoms I was telling him about, and asked me if my thyroid had been checked. So, there is a neurological component to things which gets fixed when we regain controlled normal levels of hormone.

[Beth41109]

#1065847

Thanks, Bobbi…

I will get an uptake scan when I’m no longer nursing and when I get hyperthyroid again which I know I will be soon enough.

I agree with you that people with Graves can of course get sick with something else, but my problem has been that the OBs thought it couldn’t be the hyperthyroidism making me so sick, and they did not think I had Graves because my TSI was under 125.

And the three cardiologists I’ve seen had opposite opinion. Their opinion was that the hyperthyroidism alone, is enough to put anyone into heart failure, especially a pregnant woman because blood volume increases by a third during pregnancy.

This makes sense, but I have had symptoms that have not gone away since I became euthyroid again.

My heart function while not bad has not returned to normal. I have borderline left ventricular ejection fraction (50-54%), and restricted global wall movement, and I can tell I am not the same person I was before all this happened.

Now the cardiologists are not concerned- they are treating me like I had peripartum cardiomyopathy-they feel as long as I don’t get pregnant again I will not have heart problems again, which would be true if I had only had heart problems in the last trimester.

But strictly speaking I did not have peripartum cardiomyopathy, because I went into acute decompensated heart failure in when I was only 7 weeks pregnant.

I actually got a little better after the first trimester although I remained in heart failure until well after my son was born. This is consistent with an autoimmune cause of heart failure, but was it only Graves disease or another autoimmune disorder as well?

When he was almost four months old I developed symptoms of Dressler’s syndrome, which is actually something that happens when a heart is healing. So based on that, I think that was when I was recovering from the heart failure.

Most days I have the feeling a person has the day before they will be sick in the bed. I feel like I am coming down with something.

When I do really work hard one day, the next day I will feel like I have a mild case of the flu-which is what mild heart failure feels like. (Bad heart failure feels like a flu that is going to kill you with urinary and liver symptoms)

And a new symptom I’ve developed is a flushing type rash on my forehead, shoulders, a V-shaped on my chest, elbows and inside of my forearms. This comes the day after I’ve made myself sick in the bed from over-exertion.

I guess what I’m trying to say is I’m still sick even though I’m euthyroid. I have arthritis-like symptoms, dementia-like symptoms, and my heart doesn’t seem to me to be functioning well.

And I can’t get a diagnosis-and I can’t get any treatment because I can’t get a diagnosis.

I need to find the right kind of doctor so that if I get really sick again, I can get a prompt treatment.

I think I need a Graves specialist, not a regular endo that only thinks he/she knows about Graves. I have encountered two of those already, and they know less than I do about it.

I’ve had this disease so long that I have had many of the atypical symptoms-EAC rash, vasculitis, blood clots, osteopenia, Colles fracture, vitiligo, nystagmus, poor night vision, a washing out of the color red at twilight etc. You tell these symptoms to a regular endo and they look at you like you are a mental case.

My internist is the only doctor i’ve seen who has gone through my medical records with any care, so she sees these things in my records- except for the eye stuff- I haven’t seen an ophthmaologist- so she doesn’t think I’m crazy.

So of course the last thing I want to do is tell the endos about the dementia…that will only confirm their suspicion that it’s all in my head.

I have told my internist about the dementia but I think she thinks it might be from depression, but I’m not depressed.
This is probably hard for her to believe given that I endured almost a year in heart failure without any help.

I was terribly despondent at that time, but since I got a diagnosis of heart failure, and my heart function has improved, I have not been depressed, just wanting answers and possible therapies for my remaining symptoms.

I’m still hopeful I can be 100% well again, if only I can find the right doctor.

My internist did refer me to a neurologist but the neurologist didn’t have anything to offer about Graves neurolopathies, and I really want to explore that before we start going down the road of other causes of dementia.

Who are the top Graves doctors?

Now that I’ve had heart failure, and I have dementia-like problems, I am ready to travel anywhere to see the best Graves doctors there are. I think I’ve exhausted the resources in my hometown, unless a rheumatologist could be knowledgeable about Graves…that is one kind specialist I have not seen.

Beth

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