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in reply to: Post-RAI Gastroparesis, Anyone? #1073552

Thanks for the reply, Kimberly. Good golly, I can’t imagine having more than two AD’s – one can be disabling enough. It’s such a mystery how these Autoimmune Diseases just show up and attack different organs of the body. And to make matters worse, it generally affects women of child-bearing age, so if you’re a mom with two AD’s – hats off to you for not giving up.

My doctor has added another test for pheocytochroma (affecting the adrenals) to find out why my BP is elevated. I hope it isn’t another disease, but if it is pheo, then there’s a solution. I had my cortisol and estradiol levels checked too – but they all came out normal.

My thyroid levels have been slowly and steadily decreasing over the past two years that I’ve been on 125 mcg of synthroid. My TSH is now at 1.68 which is very normal, and my FT3 is low normal, while my FT4 is normal, in the mid-range. At these levels, I actually feel hypothyroid. I’m very sluggish and sleepy all the time. I’m gaining weight despite the gastroparesis. And, oh, the brain fog!

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in reply to: Post-RAI Gastroparesis, Anyone? #1073550

Hi. I’m back. Unfortunately, I don’t have any good news about my condition; it has only progressively worsened. I still suffer from related symptoms such as nausea and constipation.

My GE doctor checked my stomach via endoscopy and found scar tissue in the antrum of my stomach. I came out diagnosed with antral gastritis. He then checked for H. Pylori, but it came out negative. Early this year, I developed acid reflux.

I am still taking Domperidone, at 10mg 3 times daily. Liquids still refuse to drain from my stomach without the Domperidone.

I developed neuropathies. I limped in my left leg, had pounding pains in my palms and the soles of my feet, and burning nerve pain along my limbs. I experience twitches, cramps and muscle spasms all over my body including my face. I am now taking a large dose of B-12 together with my other B-vitamins. The B-vitamins have reduced the various nerve pains.

I also developed heart symptoms. PVC’s are a constant companion – especially when it gets hot like 29 deg Centigrade and above, or when I brisk walk. I always feel like I’m out of breath because of my abnormal heart rhythm. And I feel light-headed My heart feels very weak now. The Inderal I was made to take only exacerbated the heart symptoms – I felt like I was suffocating and I’d have fluid build-up in my lungs, and my joints would start to ache.

I still suffer from heat intolerance and slightly elevated blood calcium despite my normal TSH, my low normal FT3, and my mid-range normal FT4. I am still on 125 mcg of Synthroid daily, plus 100 mcg of Selenium to aid FT4 conversion to FT3.

I’m always tired, and sleepy, but I can’t get any rest at night, and I always wake up past midnight with a throbbing headache, PVC’s and high blood pressure. I now suffer from a 140/90 blood pressure. I vomit because of the nausea. I experience hot flashes in my chest, but feel like my feet are on blocks of ice. My estradiol, estrogen, progesterone were checked – but they were all normal in the mid-range. Recently, I’ve had a parathyroid hormone test with slightly elevated results, and then underwent a parathyroid scan – but that turned out negative for tumors.

I still suffer from brain fog. My short-term memory is pretty useless. I am unable to work in this state.

It’s been six years since I was diagnosed with GD, and four years since I underwent RAI. Shouldn’t I be feeling better by now?

Anyone here still struggling for as long as I have?

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in reply to: Post-RAI Gastroparesis, Anyone? #1073546

Thank you very much for all your replies.

mtbikrchick wrote:I was tested for gastroparesis a couple of months ago, but my final diagnosis is autoimmune atrophic gastritis. I’ve been researching through many medical textbooks and quality websites (NIH, Mayo etc.) and have read one single sentence a couple of places that alludes to the possibility that RAI treatment may increase a predisposition to atrophic gastritis which can eventually lead to hypochlorhydra (not enough stomach acid production) and pernicious anemia (inability to absorb B-12 in the intestines). I have to assume that your gastroenterologist has tested you for this stuff too?

My tests turned out negative for hypochlorydia, and my stomach lining is normal. The doctors said there’s nothing "structurally" wrong with my GI tract. Thankfully, my stomach is responding to medication now, otherwise I won’t even be able to eat a thing. My endocrinologist did mention something similar to what you have, and he said it’s even rarer than gastroparesis. He also had to consult a book to look up my symptoms, and admitted that he hasn’t come by anyone else with my set of problems. We’re a bunch of overachievers, aren’t we? Anyway, I will continue to do more research on my condition. Good luck to both of us.

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in reply to: Medication Dosage Lowered, Not Feeling Well #1073722

lkmanley wrote:But now I am feeling nauseated again after eating and sometimes I feel hot and then cold. I often have a flushed feeling. I talked to my endo about it, but this didn’t sound common. The "sick" feeling also comes and goes. I will feel okay for awhile and then not so good. It is tiresome and I am confused about what is going on with my body. I’m not sure if the lowered does has something to do with it and I am sure a new blood work up would not reflect what I am experiencing off and on. Anyone else have problems like this?

I too have experienced these sick feelings. I thought I was going through early menopause. Yes, it is tiresome, confusing, distracting and disturbing, but there is a way of dealing with this.

First of all, my endo gave me a disclaimer about bloodwork, saying that just because it shows up normal doesn’t mean it’s always normal. The hormonal system of a person with GD can be very erratic, and various daily stressors, and even the things you ingest, can trigger fluctuations that can cause us to feel sick one moment and fine the next. Even in a normal person, thyroid hormone levels change throughout the day. It calmed me down a bit, accepting this reality, and knowing that my endo wasn’t just dismissing my symptoms.

The other thing about thyroid hormones is that they affect multiple systems in the body (to quote my endo), so eventually, my doc had to refer me to other specialists as the "uncommon" symptoms arose. The other specialists treat me on the basis of my (digestive, neural, cardiovascular, reproductive system) symptoms (mostly to suppress the unpleasant symptoms) while referring to my thyroid bloodwork. Our bodies are adjusting to our hormones at every instant, and multiple systems are affected by this, producing a variety of symptoms.

Maybe the solution to your flushed feeling and nausea is just another harmless pill. The important thing is that you are sticking to your thyroid management plan, avoiding stress, and eating the foods allowed in your condition. The rest of the "uncommon" symptoms (like nausea) can then be handled by other specialists better trained to address your needs.

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in reply to: muscle/joint pain #1073744

Jake George wrote:When we are hyper with Graves’ disease we experience muscle mass and bone mass loss. Those two things by themselves are enough to cause muscle pains.

This really sounds consistent with costochondritis. I was not diagnosed with this specific condition, but I know someone who was, because of muscle mass loss.

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in reply to: muscle/joint pain #1073743

mwshore121 wrote:I have recently been diagnosed with costochondritis, so my right rib area hurts as well. I have also noticed that there are periods during the day that my blood pressure drops, which is a huge change. Has anyone ever changed their dosage so drastically and had as many "issues" as I’m having? Could the muscle/joint pain be related to GD?

I was diagnosed with GD in 2004, but the pain in my ribs began in 2001.
It began as a recurring cramping pain that "seized" me and took my breath away.
My endo looked at my medical records and attributed the recurring pain to an undiagnosed case of GD.
Between 2004 and 2006, I suffered severe muscle seizures in all muscle groups below the neck about 5-8 times a day.
I felt like my legs and arms were being wrenched out of their sockets.
I was under observation in a hospital and they did all sorts of tests.
Eventually, the muscle seizures were pinned down to the rapid fluctuation of my thyroid hormone levels.
In my case, rapid fluctuations were triggered by : physical fatigue (even just light walking), emotional stress (hearing someone shout at me), sudden heat (like stepping into a garage where car motors are running), and adjustments to my medication.
The rapid fluctuation of thyroid hormone levels can set off an electrolyte imbalance that can cause muscle pain, or in my case, an abnormal brain chemistry that mimicked epilepsy.
From time to time, I still feel muscle and joint pain that takes my breath away, but it is no longer as severe as it used to be after I took my RAI.

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