[Beth41109]

in reply to: Newly Diagnosed — How Sick were You All? #1065841

Hi Bluewave,
I’m sure there are more knowledgeable people about graves on this list…I’ve gotten help here, but I thought I’d try to give a little back…

Depending on how long you had the Graves just getting your thyroid levels down is only going to be the start of getting better…

I believe your muscle wasting tells you about your heart health..your heart is the muscle that was most beat up by the Graves…not only was it wasted away it was beat like a horse into a gallop by the excess thyroid hormone…

Now that you know what the symptoms of hyperthyroidism are, tell your doctor how long it has been since your first symptoms appeared and discuss the possibility of getting an echocardiogram…

I was in undiagnosed heart failure for about a year, including 5 weeks of acute decompensated heart failure…AFTER I got a diagnosis of hyperthyroidism…doctors cannot tell be looking at you how sick you are…they can’t hear what your left ventricular ejection fraction is with a stethoscope…

So don’t hold back…if you feel really bad ask for some heart tests…24 Holter monitor and echocardiogram…nausea can be caused by heart problems…

One more thing having insomnia, trouble sleeping, or even discomfort lying flat and especially if accompanied by more copious nighttime urination are heart signs not to be ignored.

Beth

[Beth41109]

in reply to: Graves neurology #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

[Beth41109]

in reply to: Graves neurology #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

[Beth41109]

in reply to: Husband died of Graves #1066347

Hi Aimee,
I am so sorry hyperthyroid induced heart failure robbed you and your child of a husband and father.

I had acute decompensated heart failure from hyperthyroidism after having had undiagnosed Graves disease for over many, many years.

Because I am a woman and have had many pregnancies the high hormone levels would put me into remission for periods of time but eventually the on and off again Graves disease damaged my heart enough that when I had a relapse of T3 thyrotoxicosis I had heart failure.

I had an apathetic thyroid storm which usually only happens to elderly people. Elderly people don’t have the high fevers and hypertension that usually accompany a thyroid storm so often they die before anybody realizes they were in a thyroid storm.

I think my thyroid storm was apathetic rather than the normal storm because I already had years of heart damage from undiagnosed untreated Graves disease.

Graves disease causes hyperthyroidism and hyperthyroidism damages the heart muscle by making it work too hard.
And when the hyperthyroid state remits the heart tries to heal itself. People who have only one acute bout of hyperthyroidism from a thyroiditis that is not Graves disease usually go on to make a full recovery.

But in people with long standing undiagnosed Graves disease every time the heart tries to heal itself after a hyperthyroid bout, a feature of the Graves disease is that too many fibroblasts are put down at the site of injury.

After my most recent bout of heart failure which lasted 8 months I developed restrictive pericarditis symptoms because while my heart was healing the Graves disease was putting down too much fibrous tissue.

But I firmly believe I already had a fibrous heart prior to this most recent bout which is why I had 5 weeks of acute decompensation rather than only 8 days of acute decompensation like I did the previous time (and I had months of heart failure after the acute phase both of these last times during which I couldn’t get a diagnosis.)

The time prior to this most recent time, I though I was sick.
The time prior to that. I just thought I was aging badly.
Only this most recent time was I so sick that I knew it wasn’t age or an infection but heart failure.

The doctor who examined your husband’s heart said he could not tell how long the fibrous tissue had been in your husband’s heart which probably is technically true…he can’t say if it was months years, or even 20 years, that it took for your husbands heart to get fibrous, but my guess would be that it likely was not just from the last 4 weeks of your husband’s life.

Although it is not impossible that your husband had some other underlying medical condition,
everything the autopsy revealed fits entirely with long standing undiagnosed untreated Graves disease.
And probably if you look at symptoms list, or if you husband were here to do it, he would find that many of the symptoms he had for years before he felt sick. He may have complained to a doctor about them, or he may not have.

In my own case some things I did seek treatment for, and other things I let go, but even when I did seek help no one thought to check my thyroid. Every symptom I thought was bad enough to complain to a doctor about was explained away by the doctor as somehow normal or not that bad…nothing to worry about…

Now my feeling is that TSH testing is so cheap, Graves disease so common, and the outcome of long standing undiagnosed Graves so bad, why not test everyone like we do routine cholesterol screening?

Again I’m so sorry you lost your husband this way, and it is especially heartbreaking because there are treatments that could have saved his life had he been diagnosed earlier, and he was just getting to the best part of his life with you and your new baby.
Beth

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