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in reply to: 9 months post op #1061351

Hi Ruby in Reno!
I was thinking about you this morning, remembering all the stages you experienced with Graves’. You nailed it, it is so nice to take the time to check back in, let all of us know that you have walked the walk, had your surgery, and you are beginning to have your LIFE BACK! Your experience with Graves’ has been so typical. A woman having classic Graves’ symptoms, and instead of doing a simple thyroid panel, and taking a look at her neck, the patient is given an antii-depressant and/or an anti-anxiety drug. While the Graves’ rages on.

It is the medical profession, as well as the general community, that needs to be educated in this disease. Fortunately, there has been increasing notice attention to Graves in the medical community. In the past year or two, there have been continuing ed programs about Graves’ for doctors. It can make a huge difference in awareness to share your (our) experience with undiagnosed Graves’, with everyone! You never know, the person you are talking to may have a relative, friend or neighbor, who have these symptoms.

I am so glad you are nine months out, and doing well. It is wonderful for "graduates" of this site to check back in.
Shirley in SEattle

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in reply to: another newbie (subclinical hyper TED) #1061355

He is my dismal experience with having subclinical hyperthyroidism. But I don’t think it is typical. You can see the pattern of my Graves’ at the end of this post. My TSH has been suppressed for years, but I have to have the replacement hormone or I become a zombie who cannot eat food. But that is recent.
Over the years, I have felt well, had no symptoms of being hyper (after my thyroidectomy, being euthyroid with no replacement for 30 years, then needing a little Synthroid. This is over a period of 40+ years. I am aware of the issues with having a sustained suppressed TSH. But I felt great.

So finally, a year and 1/2 ago, I agreed to decrease my Synthroid from 125mcg until my TSH was at least in the low normal range. I agreed to do this because of increased risk of osteoporosis and afib. My T3 is always normal, T4 is sometimes slightly elevated. As we decreased the Synthroid, I became pathologically cold, felt sluggish, could not stay out of bed. TSH did not change. Then I could not eat. Felt like a basketball was under my ribs. I felt very hypo, but was losing weight because I could not eat. i saw a GI doc. Had an endoscopy, was fine. Had a gastric emptying study, and the food had not left my stomach in 12 hours! Which is why I could not eat, was losing weight. Diagnosis gastro paresis, related to being hypothyroid (or not having enough thyroxin circulating, who knows? Because my TSH remained suppressed whether I was at 150 mcg or 77. As mentioned above, I did all this reluctantly,for I felt great at 125mcg, to reduce the risk of osteoporosis and slight increased incidence of afib.
I could not live not eating, and did not want a gastrostomy tube, so we increased my Synthroid.
I guess there is not much take-home message from my experience, except that i have subclinical hyperthyroidism WITH replacement, and I cannot live without it.

I completely understand about the docs not talking to each other. Assembling a team is tough. I considered going to some well know clinics who work with TED patients, but there are way too many eye appointments to consistently do that. I pretty much asked around and shopped around the city for the best people available to my knowledge. I am having this experience with TED, which I developed two years ago (50 years after my Graves’ dx at the age of 23.) I had increasing symptoms of TED, most of which you have mentioned, plus crippling double vision, horrible light sensitivity and lots of tearing. It has been my experience that endos immediately refer to ophthamologists if they suspect TED. Endos don’t follow it or treat it. But they do follow Graves, and all things thyroid.
My orbital CT showed extremely fibrosed muscles of the eyes, no surprise to anyone. If you do have TED, you definitely need to be followed by a neuro-ophthamologist, and preferable a strabismus surgeon all the way through the active phase. The surgeon follow up, will measure, and sometimes treat with prisms, if you have double vision. If you don’t have it, you probably don’t need to be followed by a strabismus surgeon (almost always a pediatric ophthamologist.
But you DO need to be followed by a good neuro-ophthamologist if you had a TED diagnosis. There are a small % of people who develop optic neuropathy (pressure on the optic nerve) which means treatment with an orbital decompression, no matter which phase you are in. Otherwise, any surgical procedures should be done after the active phase (meaning that your eyes are stable, not changing anymore.) If you have TED, I can tell you that it finally gets to a stable state, where your eyes are not getting worse. That is step #1.
I have done a lot of due diligence with both situations. It is simply hard to have Graves’ or TED. But at the end of the day, there is usually improvement, and the strabismus surgery to get rid of my double vision was absolutely wonderful.
I am not sure if any of this is specifically helpful to you, but this site is all about sharing experiences, so there may be something that is helpful.
Shirley

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in reply to: Newly diagnosed – took RAI today #1061406

Hi Gayle, welcome to the site! You can begin by reading the thread under the one you answered. Lots of good information there. LOTs! Also, use the search engine, type in RAI,and you will get tons more. I think superdaves’s last post will be very helpful to you about the future, from his recent experience. There are some really great posts from the facilitators on this subject. Welcome to this site.
Shirley

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in reply to: I chose RAI Treatment #1061708

Hi Dave, nice to hear from you again! That is what this site is all about. Helping others. You are so correct, there is so much incorrect and inflammatory garbage on the web. This site is such a standout from the rest, in every way.
I am glad it was helpful to you, and I know you will be helpful to others, so do check back to tell us how you are doing, and when you feel 100% again, check back to say hello now and then. You have made a lot of progress, making decisions, acting on them, worrying about them, waiting for (what seems like) FOREVER to see some progress and improvement. Sounds like you are on your way! Great.
Shirley

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in reply to: ANA and ALT #1061400

HI, NICE TO HEAR FROM YOU!
I am sorry that you have all this stuff in your life, but at the same time, so grateful for you that you have good people following you, and even better, they will be communicating with each other! To top it off, you are seeing three departments on the same day! Amazing.
Do write to give an update on how things are going for you. Glad your LFT’s are doing in the right direction. Very good news.
Shirley

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in reply to: Pediatric Graves – My 6 year old son #1061441

Hi, this is a suggestion for you to pursue. I have worked in medicine in the adult health care field for 5 decades.
One thing I have learned, and I include myself, is that docs and nurses who work with drugs for adults, don’t know a darn thing about pediatric doses. Ideally, it would be marvelous if you can find a pediatric endocrinologist for your son, for this will be a long relationship. Is this possible?
I walked over to our pharmacy, talked to the pharmacist about pediatric doses of Tapazole, and learned from this pharmacist that the calculation for kids is as follows:
Pediatric
Initially, the daily dosage is 0.4 mg-.7 mg/kg of body weight (NIH National Institute of Health web page plus my pharmacist.

So I am suggesting that you do call his doctor tomorrow morning. It will be VERY important for your to have blood draws (lab tests, of TSH, T3, T4 and liver function studies (LFT) as he takes this drug. If you doctor has told you all of this, I suggest reviewing it again, to be sure you are on the same page. This is a lifetime situation for you, so it would be so nice for both of you if you ask the endocrinologist to contact the parent any other pediatric patient in his practice, and ask permission for you to contact them. Just another suggestion. It is SO HELPFUL to have support, and know people who are going through the same thing and I realize that this is exactly what you are looking for.
Of course it is very upsetting to have your son so sick. I think it is very important for you to call about how he is doing, and definitely mention the bruising on his legs. It is true that when we are hyperthyroid, that rage, anger, anxiety,
are all part of the process, plus most of the other symptoms you have mentioned.
Here is another beginning reference for you re children and graves
http://www.ngdf.org/pages/45

The good good thing is, that FINALLY, there is a diagnosis. Your soon WILL get better. I am so sorry that this was missed since he was two years old. This is not that uncommon, unfortunately, for doctors not even think of Graves’.
There is a lot of effort to make that a better situation. The longer he is on the drug, the better he will probably feel.
but the labs and your reporting are super important.
Do write again.
Shirley

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in reply to: HIGH TSI–normal for Graves? #1061423

Short answer? No. Not relevant. The ADT’S (and beta blockers for too fast heart rate and other cardiac stuff associated with too much thyroxine circulating) are to put a brake on the crazy production of thyroid hormone. And the symptoms, and move toward being in a normal state, so you can decide a further treatment plan. The super important stuff when taking ATD;s are:-
1.reporting your symptoms and changes
2. and frequent labs TSH, T3 AND T4. and Liver function studies.
Keeping in good touch with your endo.
When you see your endo, you discuss this, too, for clarification.
Shirley

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in reply to: HIGH TSI–normal for Graves? #1061421

HI, yes, it is common to have a high TSI with Graves’. And, just checking back in the search engine just for a few seconds, I found a post from someone with a TSI of 5735.
In summary, it means you have an autoimmune condition called graves’ The TSI gets whacky and tells the thyroid gland to go crazy and produce enough thyroxine for the whole neighborhood! Well what I mean is, TOO MUCH, and you already know that..

Some doctors think that it MIGHT be helpful in following the progression of TED. Probably more doctors do not feel that it helpful for treatment decisions, relating to the active and inactive phase of TED. What I mean by that is, if a person has TED, and their TSI is going down, but they know their eyes are changing every week, and the measurements are changing frequently as well, a lower TSI is not a reason to proceed with all the surgical procedures that are not indicated when the patient is still in the active phase.
And here is a short conversation about it from an NIH website. Basically, don’t worry about it, if you are super worried, call and leave a message with your concern before your appointment. If you can wait until your appointment, put that on your list of things to discuss.

I put the sentence in bold that addresses this.

NIH-Graves’ disease is an autoimmune disorder, meaning the body’s immune system acts against its own healthy cells and tissues. In Graves’ disease, the immune system makes antibodies called thyroid-stimulating immunoglobulin (TSI) that attach to thyroid cells. TSI mimics the action of TSH and stimulates the thyroid to make too much thyroid hormone. Sometimes the antibodies can instead block thyroid hormone production, leading to a confusing clinical picture. The diagnosis and treatment of Graves’ disease is often performed by an endocrinologistóa doctor who specializes in the body’s hormone-secreting glands.

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in reply to: YOUR T.E.D. onset #1061477

Hi Krisann,
I had ALL of that, plus light sensitivity! After dentist, a stretch and weight exercise class, will write this afternoon PNW time!
Shirley

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in reply to: YOUR T.E.D. onset #1061475

Hi, welcome to the boards. I am a TED pro, and will be happy to share my TED life with you. I will write later in the day, off to the dentist at this time. When my TED began, I did not realize it, neither did the eye doc, who repeatedly kept prescribing new RX for glasses, with slight changes in the RX. I wasted a lot of money on those glasses, for they did not help. I suspect I had what might be called "mild TED" during that time. IT was not until I began to have double vision, which was so intermittent at first, I was not sure that I had it, (for when I looked again, I saw only one tree!) More later, Shirley

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in reply to: Light Sensitivity and Pressure? #1061498

Hi Candi, I can at least commiserate with you, but have no answers.

I have EXTREME LIGHT SENSITIVITY! I live in Seattle, and even on overcast days, and we have many ” title=”Smile” /> I have to wear sun glasses. I feel like a freak. Love sun, but keep blinds closed. My eyes tear and stream a lot, most of the day, a little less toward evening. I tried REstasis thinking it might help me with tearing, but don’t really notice much difference. I have one slightly bulging eye, but no way will I have an elective surgery for it. Had one OD cause I had to have it. Had the plugs, made no difference at all. Also have glare from sides and up. Got a visor with the widest brim that exists, but does not take care of the sides. I use gel and lubricants at night.
I don’t have halos. Not sure of your age, but have your or your eye doc considered cataracts?
My lower lids are very retracted,a nd a palatal graft to both lower lids has been suggested. I ask over and over and over again of the oculofacial surgeons, if it will help light sensitivity and tearing. They evade the question.
Some people say that does help…..?Shirley

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in reply to: Thyroid hair question #1061501

Hi Krisann,
My experience is that I had some hair loss after I switched to generic to Synthroid. I went back to Synthroid, no more problems. I also felt (imagined or not) that I " better" on Synthroid. That is really hard to assess, even for myself! I did not have extreme hair loss, not in clumps, but it was noticeable-to me, not to others. Synthroid is definitely is more expensive.
Try putting this subject in the search engine, I know this topic has been discussed.
Shirley

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in reply to: Have decided on the RAI #1061521

Hi, CONGRATULATIONS on making a decision! It is very empowering,and your ticket back to being "normal," albeit it is a slow one (: It does take time to get the right dose, but not everyone waits a long time, it could be a short time!!! There are wonderful posts about RAI, and a couple of the facilitators have had RAI. There are some good posts about recent guidelines from facilitators. Toss RAI in the search engine, and you will find lots of good info and people’s experiences.

Re bone loss. Bone loss is associated with HYPERthyroidism. So, pretty soon, you are not going to BE hyper. Not sure of your age, but that is probably more relevant, plus being female. The risk if higher if you have been hyper years and years, but it seems that is not the case with you. When everyone is talking about bone loss, they are talking about osteopenia (beginning mild bone loss) and osteoporosis, which is more bone loss.

I am wondering if you have done anything different, to perhaps cause your back to hurt more. As you said, your back acts up now and then, and perhaps, because you have been hyper, and have done a lot of reading, you might be more aware of your back hurting. (

Some of the factors that make a difference for osteoporosis, are:
-your genes-good ole’ heredity-for better or worse
-weight bearing exercise, walking (good) Weight bearing walking increases bone growth.
-being sedentary (not so good.
-being female.
-menopause (estrogen protects our bones)
-age (related to menopause, plus all this other stuff, being frail
-hyperthyroidism, uncontrolled for a long time.
-Causian or Asian
-lack of Vitamin C and D
-long term steroid use

It is VERY EMPOWERING to take action, and know you have a plan, and will be better. Keep writing!
Shirley

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in reply to: Allergic reaction to Methimazole #1061538

Quick note. I took PTU, was great. The other one made me itch, I knew I had a choice, so I switched. Up to me. Ski’s comments pretty much sum it up, and beautifully. Thought you might like to know my experience. Ultimately had a thyroidectomy, also my choice.
This is a great board, and so glad you found it!
Shirley

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in reply to: getting labs done and taking meds #1061562

Well, I have a very curious mind, and am very interested in "Evidence based research.) I know many on this site have the same thoughts. So I would like to pursue more information about why Kimberly’s doc (or is it the lab, Kimberly?) has stamped this direction on the labs slip for thyroid labs. So now I want to know if this is a "standard of care, " and a change in practice.
Is this a lab decision, or a doctor decision? I have not heard of this before, and checked with my endo and several labs, and they have not heard of this.

There are so many variables that impact taking thyroid meds so that our labs are accurately reflected. Regarding taking thyroid hormone, the most important ones we need to do to have our Grave’s managed properly are:
-take on empty stomach
-with glass of water
-no supplements for 4 hours
-labs AT LEAST 6 weeks apart, 8-12 weeks even better.

Shirley

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