[seajnt1]

#1059422

Hello all!

I’m several years late utilizing this forum and I’m not sure what I can offer/learn here.

After being diagnosed with Graves, I was on Methimazole for over 18 months without remission or adequate correction. I opted to be treated with the radioactive iodine in May of 2005. I had NO IDEA what I was getting into!

Because of mistreatment and/or misunderstanding, my thyroid levels sank so low within a few months that I was in a complete fog and sleeping 15 hours when I could. Compounding the problem was that I had started a new job at the beginning of July. I’m surprised they didn’t fire me I was so out of it. This was a very shameful, traumatic ordeal, feeling like a complete failure and fraud on the job! I also had an elderly mother to attend to.

When I saw the doc at my prescribed appointment – late July?, he was mildly horrified at the low levels. Apparently, I was to have stopped taking the Methimazole, although I distinctly remember him saying to continue taking it after the RI. At this point in my life, like many others, I was just holding on for dear life and concentrating on putting one foot in front of the other. Being a survivor has it’s downside. We are less likely to pick up the phone and make a fuss and often, do not have the funds to be running to the doctor for every little problem.

In retrospect, I figure I was diagnosed about 10 years late, suffered terribly from the delay of treatment, then the “treatment” itself, but thanks to those very same survivor habits that hindered me getting SEEN when things were falling apart, I am still here at almost 56, feeling pretty good after years of trying to retrieve 1/2 a brain back and some relative calm and vitality. I just had those giant fibroids removed that refused to shrink after menopause (endocrine connection you think?), and I’m hoping to enjoy my life a little before I croak. My eyes will just have to stay a little buggy, they’re not bad, but It’s not in the cards financially to have that procedure.

WHY IS IT SO BLOODY HARD TO DIAGNOSE THIS CONDITION?

Thanks for listening. Janine

[Kimberly]

#1174598

Hello – I’m sorry that you had to travel such a difficult road on this Graves’ journey. The symptoms of hyperthyroidism –such as rapid heart rate, hand tremors, insomnia, mental/emotional changes, etc. — can mimic other conditions, so unfortunately we hear a lot of stories about Graves’ being misdiagnosed. The GDATF is actually a co-sponsor for a CME training program for medical professionals, which will hopefully cause general practitioners to start thinking about testing thyroid function when these symptoms occur.

Also, the American Thyroid Association and American Association of Clinical Endocrinologists released some guidance last year on the treatment of hyperthyroidism (you can check it out in the “Treatement Options” thread in the announcements section of this forum) that will *hopefully* standardize treatment practices for future patients.

Wishing you all the best – thanks for sharing your story!

[seajnt1]

#1174599

Thanks Kimberly! Looks like things are looking up in the field. I’ll check out the “Treatment Options” thread.

Janine

[beach45]

#1174600

Janine,

I appreciate your telling your story here; mine is somewhat similar.

I went misdiagnosed for years; then I was told it was probably just hormonal.

Like Kimberly said that the hyperthyroid symptoms can mimic other diseases/medical conditions.

Had I been diagnosed sooner, maybe I would not have been having such a rough time; on Methimazole myself 20 months, gained 25 lbs on that; no physician could get me into remission; RAI back May 2012, gained 10 more pounds, and now struggling to get on the right amount of T4 (Synthroid). Follow rigid exercise and diet for over 2 years now and still problems as my metabolism seems messed up; also going into menopause which doesn’t help; slowly getting there yet if I had been caught back in my 30s when they told me I was “slightly hyperthyroid” and done the appropriate tests back then, maybe I would not have been in this boat; I know others caught earlier and remission on antithyroid drugs or had RAI pretty much right away, minimal issues; with the horrible Graves symptoms in 2010-2012 going hyper to hypo and back to hyper again on Methimazole I was struggling to help my 85 year old mother who had two serious surgeries as I am the only family down here in SC; yet when I look back now I survived and have moderate TED which is being checked regularly and still going strong at 53. Won’t let this thing get me!

I am now overweight, high cholesterol, constant pain in my knees and legs, and having other issues yet I believe maybe once doctors get my levels right, things will get better. This is a person 2 years ago at 51 who was in better shape than some 20 year olds and never had pain when I exercised. Yet I have to exercise even with pain to keep myself as healthy as possible.

I too have fibroids and I had an ovarian cyst removed before Graves kicked in full force back May 2009.

I read that Gail Devers, Olympic gold metalist was misdiagnosed for years and had a severe case of undiagnosed hyperthyroidism. She even was part of a Congressional investigation for that very issue to prevent misdiagnosis of medical conditions which can kill many yearly. She had her Graves treated and later went on to win Olympic Gold. I did not share the link as was not sure if I should here, yet her story is all over the Internet; her part in this investigation was back in 2000; the information Kimberly shares on this site re: guidance on the treatment of hyperthyroidism is a very good thing and hopefully in time things will even improve more with more awareness and research as more people as I hear from my ob/gyn and others are developing thyroid disorders.

My eyes have been buggy for years and only one of my four endocrinologists picked up on this that I had TED.

I hope that you are doing better now and yes I agree why so difficult to diagnose this condition yet seems that things may be improving!

I always love to hear other’s journey with this disease as we are all so different!….beach

[Kimberly]

#1174601

@Beach45 – Please feel free to post if you have a good link to Gail Devers’ story. The restrictions on posting links are in place to make sure our members are not subjected to product sales pitches — or to web sites with questionable medical information.

We actually mentioned Ms. Devers in our latest e-newsletter, as she was inducted into the U.S. Olympic Hall of fame this summer!

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://hosted-p0.vresp.com/1262355/5aa806c371/ARCHIVE

Thanks!

[beach45]

#1174602

Thank you Kimberly!

I have here three links as I thought they were pretty good and find her a great inspiration.

The one with the video with mention about a Synthroid shortage it is not occurring not to worry as this was made a while back.

Hope you all enjoy!

Beach

http://www.empoweryourhealth.org/taxonomy/term/43

http://espn.go.com/olympics/summer/2012/espnw/story/_/id/8074063/2012-london-olympics-where-now-gail-devers

http://wrongdiagnosis.healthology.com/hybrid/hybrid-autodetect.aspx?content_id=3085&focus_handle=thyroid-health&brand_name=wrongdiagnosis

[beach45]

#1174603

P.S. thanks for sharing that Kimberly as I get the GDATF newsletter and I missed the part on Gail Devers….beach

[faithastar]

#1174604

Hi everyone I’m new to this site, am diagnosed with hyperthyroidism since 2008 and was taking meds…i’ve changed several medications these past years because whenever I take one kind of anti thyroid medicine for a long time I develop these itchiness and on and off rashes. Right now I still have those on off rashes except the wounds from my scratching. I could take those meds for years and years…..but right now I have to decide which is better RAI or just have it partially removed by surgery. The last time I checked, the doctor said my gland had doubled in size but that was last year. Now I can feel it in my neck, its becoming uncomfortable so could u pls give me some personal info about RAI & thyroidectomy. Thank u so much…!

[gayle]

#1174605

Hello to all. First of all I want to encourage you to have faith and hope. Things will get better. We all have our stories – and I mention this because Graves is such an incidius disease and it affects each of us differently. There are so many vague symptoms that mimic other diseases and conditions. It is very difficult to find a good doctor who will properly diagnose.

Now that I properly understand my Graves – I think back to when it actually started. I am presently 58 y/o and my first symptoms occured when I was 27. I can trace everything from that point and I am able to see its progression. I can’t tell you how many doctors missed the diagnosis. I am blessed to have a wonderful family doctor who listened to my issues and decided to check further. Initially they found a cyst on each lobe. Then the scan light up like a Christmas tree! He sent me to a wonderful endocrinologist who suggested RAI immediately. I tried to take the methmizole but had horrific gastric side effects and stopped it immediately. Took the RAI 1 month later. Best thing I ever did. I had to deal with the roller coaster for awhile until I went hypo.

I felt strongly about avoiding Synthroid. I prefer a more natural medicine. My doc put me on Armour thyroid and has been wonderful about working with me until we found the proper dosage. She believes in the idea that the dosage is right when the patient is doing well. She actually listens to me!!!

The best advice that I can give you…………… You know best how you are doing and how you feel. Keep accurate notes or a journal daily about hope you feel. Be very specific. I keep notes on my calendar. I summerize those notes when I have an appointment- which is about every 4 months. If I am not doing well I get an earlier appointment. DON’T WAIT!!! I also have a spreadsheet of all of my blood test result. I keep a comment section with my notes. This way I remember from one appointment to the next how I am feeling and how I am progressing. When I look back over the past year I see the huge strides that I have made. One of my problems is short term memory so this reminder is very important.

You must be your best advocate. This forum was the best thing that I found when I was first diagnosed. I was scared and didn’t know where to start looking or what questions I needed to ask. These wonderful folks helped get me pointed in the right directions and gave me the hope that I needed. I was diagnosed and took RAI in June, 2011.

God bless you in your journey. You will get better.

Gayle

[beach45]

#1174606

It is important to be our own health care advocate; I also do keep an excel spreadsheet of all my blood work results with symptoms and levels, etc.

I would love to give Armour a try some time as I am more of a believer in natural.

My issue is that my current endocrinologist only goes by lab values; he is completely against Armour as he said it is inconsistent. Against any T3 especially for over 50 year old people.

The other endocrinologist I went to one time is also against adding T3.

My internist who I will be turned over to soon by whichever endocrinologist is on a fence about Armour and said he will more likely go by what my endocrinologist recommends. I guess people cannot make a choice in some cases?

I personally do not know where I will end up as I am too new on Synthroid yet having some struggles being on it 1-1/2 months; maybe too early to tell. I just know some people do really well on Synthroid (T4) alone and some actually seem to do better with a little added T3 or a T4/T3 combo. I just believe it is good if a doctor is willing to work with the patient’s symptoms in addition to lab values and choose whatever is best for the individual patient and not dictate yet then again it is said that too much T3 can also be dangerous. I’m still very new at this thyroid hormone game post RAI.

I think it all depends on individual needs….interesting thoughts….beach

[snelsen]

#1174607

To Beach, nice post, and you reflected very nicely the T3 T4 topic.
I have a feeling you know this, but you have been on Synthroid a VERY short period of time. You’ve barely been on it long enough to have a lab drawn. Getting the right amount is frustrating, and it takes time.
Of course an endo or other doc should listen to how you feel. Having said that, when you are getting the “right” amount of Synthroid, or other thyroid hormone replacement, generally, we feel pretty darn good.
My endo at an academic center, says that there are very few people who actually feel better on the combo. He said that adding T3 to Synthroid, done properly, the T3 must be taken twice a day, to prevent a rush and then a dump. and few patients were willing to do that. This pretty much reflects his thoughts about Armour, for the T3 dose is not divided in time. Having said that, there are people who have done well on Armour, like Gayle.

Gayle, your post is so helpful to folks beginning on this Graves’ journey, or those of us who have been on it a long time. With people over 50, there is an added risk of atrial fibrillation (if too much thyroid hormone, or dumps of it) which is where that thinking came from.

In my own experience, my TSH is ALWAYS suppressed. Way back in my chart it says, “iatrogenic hyperthyroidism” which means it was caused by the medical profession. In other words, I was taking too much thyroid hormone for too long. On the other hand, my new endo and I have tried to slowly taper it over two years, and my TSH did not budge. But I became very hyPO
clinically, and could barely lift my head off the bed, and developed gastroparesis. So now I am on 125mcg. Was on 150mcg for years, and we tried to decrease it, got to 77mcg. No good.

Our bodies, before Graves, did all this thinking for us. Now we have to have docs and ourselves figuring out what to do.
It can be very discouraging. But it all we have.
Shirley

[beach45]

#1174608

Thank you Shirley; I love what you say here as that summarizes it well how this post RAI/TT thyroid hormone issue works.

What really hit me was when you said, “before Graves, our bodies did all this thinking for us.” It is not perfect science as I am realizing and we do have to rely not only on ourselves to stay healthy yet on a good doctor too. Which is where my battle is getting a doctor to really listen; getting there somewhat yet my current endo and I have this real love / hate relationship where I also know he hates to see me coming probably! Yet he has gotten me through some rough patches here and even if a very difficult doctor at times, he is very intelligent and knows this thyroid business. It would be nice if there were more “thyroid specialists” in this country.

Well yes, I started 75 mcg Synthroid August 20 as I was at the point of feeling like death of a TSH of 54. I knew it was coming yet my endocrinologist would not test me earlier than the once a month he has been doing thus far. I thought I was going to die, yet of course not, yet I felt like that and my potassium levels had gone low too.

So 75 proved to be too little so I got increased to 100 mcg; then TSH was 30 yet the FT4 was 1.08 in range (ranges .85-1.77). So we discussed increasing me somewhere from 112 – 125 mcg as my endo goes by the AACE recommendation of 1.6 mcg x kg of weight. Of course for the beginning as I know that doesn’t work later on when dosages are tweaked according to lab values and how the patient feels (latter which my endo as I mentioned does not go by!). So only on 125 mcg since September 20th; yes too short of a time yet feel just okay and the weight thing is my issue; I only have concerns over that because it made my cholesterol skyrocket and my blood pressure went a little high which I never had issues with bp in my life and my sugar is now borderline; all over night now going hypothyroid and on this Synthroid stuff. Yet I feel well let’s be patient as you said Shirley it takes time. I for one do not want to go on a bunch of medications for now newly founded problems or like trading one problem for another.

I even read on a site of an internist up north where I came from (US) who specializes in using natural thyroid hormone yet is still a regular MD and teaches at a Medical University by Rutgers University, and he even said if people are over “50” to be very careful with even thinking about using T3 due to what you talk about potential for afib and then there is that issue of bone loss over time. There are cases of people on T3 for a while where this has occurred and I do realize myself who is into natural more this is very tricky business. So I hope that the T4 alone works for me in time and that I will hopefully lose the weight as this is not a superficial thing for me at 53 as it is just for health reasons and I need to give this thing more time; because I do not want to go to just some doctor who is willing in time to give me T3 who really does not know how to dose properly.

I always find I get the best advice from people who have been living this being on thyroid hormone post RAI or TT for a very long period of time. You all put things into perspective. Wish I could go to the conference yet cannot due to circumstances yet hoping there will be videos like with 2011 conference.

That is very interesting your experiences Shirley; thanks for sharing. The fact too that you became hypo too with TSH staying low and developing issues. I hope you are feeling much better now….beach

[Kimberly]

#1174609

@faithastar – Hello and welcome! If you scroll through the last couple of pages of posts, there are actually several different threads from patients asking about RAI vs. thyroidectomy…you can check those out and read personal experiences from other patients.

You might also look at the “treatment options” thread in the announcements section of the forum, as that includes a couple of good resources that go through the pros and cons of all three treatment options.

Finally, a quick note that total thyroidectomy is currently the preferred procedure vs. removing just part of the thyroid gland. The concern is that there is a higher risk that hyperthyroidism could recur after a partial thyroidectomy.

Take care!

[Author]

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