[AmyM]

#1060315

Ok, so here’s my story.

About 3 years ago I started noticing a tremor in my right hand, heart palps, excessive sweating, couldn’t sleep, no libido, a little weight loss, etc.

10 months after symptoms started, I lost my job of 17 years, causing tons of stress and emotions.

2 months later, heart palps and pounding got so bad, I finally went to the doctor. (My mom was diagnosed w/Graves at age 38 and I was 41). I’m female, by the way. Bloodwork showed Graves Disease.

So I was put on methimazole and propranolol. All previous symptoms stopped, but I started losing hair–it was getting SO thin and seemed to be “shrinking”. I gained about 15 lbs, very quickly. I’ve always been pretty athletic and very active so this was unbelievably hard for me. I also sometimes got a nasty rash on my face–like pimples, but more like just red bumps that you couldn’t get rid of.

I suffered with these new awful symptoms for almost 2 years, as my endo thought I might go “in to remission”. Finally, 2 years in, I couldn’t take it anymore and my #’s weren’t coming down as expected, so I told him I was ready for RAI.

September of 2013 I had the RAI. Afterwords, I felt pretty good. My first bloodwork after showed my #’s were spiked indicating still pretty hyper. Next bloodwork in December finally showed me going hypo. Here were my #’s at that time: T3free-1.59 TSH–23.50 T4free–<.30. So he put me on levothyroxine. .50 mcg for 2 weeks, then up to .75 for 2 weeks, and now I've been on 100 mcg for almost 2 weeks. I feel like crap. My weight has increased even more, now I’m up almost 30 lbs total despite working out like crazy and starting the Haylie Pomroy fast metabolism diet today. I got on the scale this a.m. and was shocked to see I’ve gained almost 12 lbs. in just the past month!!!! And these little pimple like rash things are covering my cheeks and my hair is still thinning out. I’ve been crying all morning and researching everything to DEATH becoming more and more p!ssed off that I’m paying my endo to do all this for me, and yet, I feel like I have to find my own remedies here.

SOOOOOO discouraging.

I was hoping (and I would have thought) that getting on the levothyroxine would put a halt to the hypo symptoms, but they seem to have gotten worse.

Is this normal?

I’m finding out all kinds of useful, helpful info about cortisol levels, adrenals, ferritin, iron, B12 deficiencies, etc..contributing to a person’s overall health, especially where the thyroid is concerned. I guess I’m just looking for success stories. I’m reading about Armour…and raising my T3 levels. Will this help w/the awful side effects? Obviously my health is my first concern, but, I swear, my marriage is suffering and I don’t even recognize myself anymore. My gut is so huge and my clothes don’t fit…I am getting so depressed, which it appears is a common thread w/ us thyroid sufferers.

I’m putting a list together for my endo and am going in there this Wed. to DEMAND something be done. I don’t feel right! I haven’t in over 3 years!! Isn’t that long enough to suffer?

Please, someone give me hope…..

Thank you for reading. Now I’m off to explore this site and add to my knowledge. I swear, I think I’m ready for my Doctorate Degree after all the research I’ve done!

—AmyM

[Kimberly]

#1181906

Hello and welcome – Hopefully, others who have had RAI will chime in with their experiences.

One of the challenges with replacement hormone is that dosing is part art, part science – it’s definitely not a “one pill fits all” proposition. To make things even more complicated, thyroid hormone builds up in the body over time, so it can take several weeks before you know you are on the correct dose.

Hopefully, you will see some relief once you find that “sweet spot” of replacement hormone that is just right for YOU. If it’s only been two weeks since your last dose adjustment, your doctor’s options will be somewhat limited, as it’s too soon to tell if that is the correct dose. However, it’s certainly reasonable to document all of your symptoms, explain the impact that this is having on your quality of life, and ask your doctor for some further direction.

Hoping that you can get some relief soon!

[AmyM]

#1181907

Thank you! Your support and kind words mean so much. I wanted to add that my mom went on meds for a short time, swallowed the RAI pill, and went on a 100 mcg Synthroid pill that has not changed dosage in over 25 years! And she’s never had a problem and is doing great.

Ugh. Why can’t that be everyone’s story.

[mommabear]

#1181908

sorry to hear that you are going through this. Hoping that improvement happens sooner rather than later.

[myeager]

#1181909

Boy do I understand what you are going through. My husband and I are going to my Endo appointment tomorrow to have a lengthy “discussion” about my treatment. First, I wish I had never agreed to RAI…I have felt worse since that treatment and am not totally convinced it was the right option to take. Second, my levels are now at 37.58! I feel like a train has hit me head on. I hate looking at myself in the mirror and avoid it like the plague only to get some nurse on the phone who clearly does not care to try to get some answers on my health. Everything suffers with this disease and I wish I could tell you it gets better like some can. For me, it hasn’t. Its been one year. I wish I could get you out of your rut, but I am in one too. I will pray for us all and hopefully life gets better.

[AmyM]

#1181910

Hi, there, fellow sufferer! Thanks so much for the reply. Actually, today, after about 6 or 7 weeks on 100 mcg of Levo, I am starting to feel better! I went off on my nurse practitioner at my last appointment a few days back (when I was still feeling crappy) and demanded they test my Free T3 levels. She ASSURED me SHE was the expert and they definitely WERE testing those all along.

Well, lo and behold, today I get a call that they are ”switching my meds”. I’m still waiting on my labs in the mail, but apparently they are still indicating hypo. So they are putting me on a compounded T4/T3 which I will start tomorrow. I want so bad to call her up and say, “SEE!! I told ya things weren’t right!!”

I also started the Haylie Pomroy diet which excludes all things soy, wheat, dairy, fruit juice, sweets, carbs from your diet. I don’t know if I’ve finally started adapting to the meds, or the diet has helped, but my facial rash thing has completely disappeared and my hair is starting to feel better. I’m helping that adding the T3 will help more with the belly bulge and tired feelings I get more often than not.

I guess all I can say is RESEARCH RESEARCH and track and follow your lab numbers. Demand answers and don’t be afraid to speak up.

Stay in touch
–Amy

[Kimberly]

#1181911

So glad to hear you are feeling better!

This is a good reminder for everyone to ask for hard copies of labs at each visit – and to and ask questions if you don’t understand your doc’s dosing recommendations.

I would suggest talking to your primary care doc before cutting carbs completely out of your diet, as there are risks involved; here’s some info from the Mayo Clinic:

(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://www.mayoclinic.org/low-carb-diet/art-20045831?pg=2

[AmyM]

#1181912

Thanks, Kim. I actually only am eating the “good” carbs now. Plenty of fruit and legumes/beans. The first few days I had a splitting headache weaning off my morning coffee, but like a miracle, on day 4 it all got better. I feel SO good.

Can’t wait to see how adding in some T3 will help w/my other lingering symptoms.

Gosh, what a rollercoaster!

[Author]

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