# I'm new here and really confused :(



## jesca67 (May 1, 2018)

Hi everyone, My name is Jess and I found this board after doing some research on Graves disease. I've had a lot of excellent help on previous boards (not thyroid related), so I figured I'd talk to ya'll and get some advice.

In 2016, I was diagnosed with Hyperthyroid/Graves Disease. Doctor started me on methamazole and I broke out in a rash. We then tried PTU and same thing, a bad rash. I am with Kaiser Permanente (grrr!). The Kaiser Endo then said the next step is RAI. I refused RAI in 2016 because I was preparing to get pregnant. At the time I was 36. The Endo said the only other treatment then is a thyroidectomy. She referred me to a Kaiser surgeon. At that time the surgeon said I was not a candidate for surgery because the risks were too high. My symptoms at that time were elevated heart rate (120bpm resting), severe heat intolerance, insomnia, night sweats and frequent bowel movements. I did not have any issues with my eyes or a goiter.

After meeting with the surgeon I was desperate for some relief. I finally caved and decided to get the RAI treatment. I went to get the procedure done and the technician took a scan of my thyroid and said it's working perfectly fine and you are not getting radiation today. I thought to myself "Thank goodness!". Life went on...

Now I am 38 and I have been trying to get pregnant since late last year. Reproductive docs ran some blood work and informed me that my thyroid was out of whack again and to work with the Endo.

Right now, the Endo is telling me that I should meet with another surgeon for a second opinion. I want to, but I am afraid this second surgeon is going to say the same as the first. On top of that, I may be pregnant (it is too early to tell).

I'm frustrated that after 2 years of trying to be proactive and advocate for my health I am still in the same place I was back in 2016 and still with no solution in sight. I wanted surgery 2 years ago so that I wouldn't have to deal with thyroid issues while trying to conceive. I am afraid that at this point in my life, if I have surgery and then become hypo -- it will be even more difficult to conceive, plus I am running out of time on fertility.

Has anyone run into any of these issues? I am desperate for some advice. Thanks for listening. Complete history of lab work is attached. Below are current lab numbers as of early April.

TSH - 0.02

T4FREE - 2.5

T3 - 284

TS-IGS - 316


----------



## lizzydoe (May 1, 2018)

Hello, I am a newbie too! I was diagnosed with Graves disease in 2015, and since I had already had children and a hysterectomy, I decided right away to do the RAI, because I was also told that surgery and RAI were the only way to prevent my Graves from attacking my thyroid. I just want to stress - DO NOT get radioactive iodine without doing your research, and do NOT believe that surgery and RAI are the only way to go, as it isn't for a lot of people, I just now found out that, even though my Endo told me that my thyroid is the only thing that will really be effected by the RAI, I found out that your thyroid, uterus, ovaries, intestines, kidneys, salivary glands, eyes, and a lot more absorb the iodine as well, and this can lead to cancers, and damaged tissue in these regions. I am now battling with constant kidney infections. Also, I am on levothyroxine for the rest of my life to replace my thyroid, and that in itself is a pain to manage. There is no "perfect" mcg for the pills, and they constantly have to be monitored and changed. Look into a Paleo diet, no dairy and no gluten, and no refined sugar - only fruit sugar, I hear this has been used to "reverse" Graves disease. I am not sure if it works, because I jumped the gun and killed my thyroid, but, I would go back in a heartbeat and refuse to take the RAI without trying everything else first!


----------



## Lovlkn (Dec 20, 2009)

jesca67 said:


> Hi everyone, My name is Jess and I found this board after doing some research on Graves disease. I've had a lot of excellent help on previous boards (not thyroid related), so I figured I'd talk to ya'll and get some advice.
> 
> In 2016, I was diagnosed with Hyperthyroid/Graves Disease. Doctor started me on methamazole and I broke out in a rash. We then tried PTU and same thing, a bad rash. I am with Kaiser Permanente (grrr!). The Kaiser Endo then said the next step is RAI. I refused RAI in 2016 because I was preparing to get pregnant. At the time I was 36. The Endo said the only other treatment then is a thyroidectomy. She referred me to a Kaiser surgeon. At that time the surgeon said I was not a candidate for surgery because the risks were too high. My symptoms at that time were elevated heart rate (120bpm resting), severe heat intolerance, insomnia, night sweats and frequent bowel movements. I did not have any issues with my eyes or a goiter.
> 
> ...


Welcome to the board! Can you please edit in your (ranges) for the lab's you have had run.

I personally would opt for a thyroid removal if you have both TSI and TPO antibodies as you will never be able to regulate thyroid hormone post RAI having both antibodies.

Go for the second opinion.


----------



## jesca67 (May 1, 2018)

Hi Lizzydoe, I am so sorry you are going through that. I agree that RAI isn't the best choice for all, however it seems like that's the first and preferred choice by most doctors. It's so difficult to put all your trust in doctors and then hear about stories like yours. I have become very distrusting of doctors due to several bad past experiences. I also think it's my specific care provider that may be to question.


----------



## jesca67 (May 1, 2018)

Good morning, Yes here are my labs with the normal ranges.

TSH: 0.02

~Normal: 0.40 - 4.20

T4: 2.5

~Normal: 0.8 - 1.7

T3: 284

~Normal: 50 - 170

TSI: 316%

~Normal: Less than 140%

I agree on not having RAI and have preferred surgery, but the surgeon told me I am not a candidate for surgery. I've hit a wall with my medical care. I am going to pursue a second opinion with another surgeon, but what are my options in the event that they tell me I'm still not a candidate for surgery? Do I get a third opinion and so on? Has anyone dealt with uncooperative doctors?


----------



## blackngold (Oct 28, 2011)

it's true after TT or RAI witch I knew I never wanted RAI that your levels will NEVER be normal something to think about seriously it's very depressing you might as well do the diet changes now because if you have a TT you will have to do them anyway if you cant tolerate the methimazole/PTU I'm surprised that the surgeon said no also a lot of women go into remission during pregnancy and some lucky ones stay there there must be a reason you got turned down I'd take it as a blessing in disguise just my point of view


----------



## jesca67 (May 1, 2018)

Thanks for the response. I really appreciate the feedback.

What kind of diet changes would be recommended?

Also, is itchy skin a symptom of Graves? Past few days I've been scratching like a dog with fleas! It's all over the body itching with no rash.

My endo responded to my email and is recommending I get back on PTU and take claritin to stop the rash. I've taken PTU with benadryl and zyrtec to stop the rash but it never worked. I'm going to question my doctor on why she thinks claritin would stop a PTU rash when benadryl and zyrtec didnt do a thing.

Grrrrrrr.....I just want off this roller coaster ride


----------



## Lovlkn (Dec 20, 2009)

> TSH: 0.02
> 
> ~Normal: 0.40 - 4.20
> 
> ...


Your thyroid levels are fairly high. Have they offered you propranolol which is a beta blocker? In high doses it will help lower the FT-3 levels.

Is what you labeled as T4, the "free T-4" or is it just T4?

The surgeon won't operate because they don't want you to have a heart attack on the table as once they remove the thyroid gland there is a spill of hormone into your system


----------



## blackngold (Oct 28, 2011)

the itchy skin is most likely the antibodies I would recommend going gluten and dairy free you can try doing the elimination diet get a food allergy test done see what foods might be an issue I was suppose to do that but didn't want to pay the 600 dollars to have it done I would recommend doing A C E vitamins B complex magnesium calcium zinc selenium and omega 3's to help reduce inflammation and boost your immune system


----------



## blackngold (Oct 28, 2011)

I guess some people are allergic to the methimazole and PTU and have no choice but to do RAI sorry you are going through this good luck !!!!!! the only thing that itched so bad was my legs but it wasn't from the methimazole so idk :/


----------



## blackngold (Oct 28, 2011)

I wanted to also mention for me whenever I felt super bloated the one thing that helped me the most was those aloe vera drinks you can get at your local grocery store I guess because they have anti inflammatory properties not sure but they always made me feel better !! check out this link


----------



## jenny v (May 6, 2012)

Agreed, you are pretty hyper right now. What is your heart rate like? I would definitely push for a beta blocker if it's high, I'm surprised they didn't give you one back in 2016. And if they do and the first one doesn't work for you, ask for another kind. I started with propranolol and it turned me into a zombie, they switched me to Toprol XL and it worked like a charm. I think PTU and methimazole are your only options, unfortunately. Does it give a whole body rash right away? Is it possible to take it for a month or so to get your levels down enough to do surgery?

Also, DEFINITELY make sure you are or aren't pregnant before starting any meds.


----------



## blackngold (Oct 28, 2011)

has anyone tried Thytrophin PMG??? suppose to help reduce antibodies by sending them to your gut ?!


----------



## Lovlkn (Dec 20, 2009)

blackngold said:


> has anyone tried Thytrophin PMG??? suppose to help reduce antibodies by sending them to your gut ?!





> *Proprietary Blend: 109 mg* Magnesium citrate and bovine thyroid PMG™ extract† (processed to substantially remove its thyroxine).


I personally wouldn't take this -


----------



## blackngold (Oct 28, 2011)

I am super curious how my antibodies are looking now that I have had my thyroid removed when I was first diagnosed they were in the 800's


----------



## jesca67 (May 1, 2018)

My thyroid peeps! It's been a few days since I've been on here. It's been a little crazy on my end. I apologize for being away.

On Thursday a close colleague passed away and I have been grieving the loss. Also, on Thursday I had to go to urgent care. Thought I was having a heart attack. Racing heart, dizzy, couldn't catch my breath, sweating, shaking and blood pressure was all over the place. My resting heart rate was between 136-150 bpm and blood pressure was 153/104. I was treated for tachycardia and hyperthyroid. I was given propranolol, PTU and Claritin. That was an episode! Since this ordeal I have been feeling really tired and so far I haven't gotten a rash from PTU and really hoping it doesn't come. My mysterious all over itching stopped after starting the medications.

At this point I still am not sure if I'm pregnant. Still a little too early to tell, but the Doctor's are treading lightly until we find out.

To answer a few questions from above.

Lovlkn: The T4 is T4 Free.

blackngold: I am watching my diet to see if anything triggers my itching spells again. I am taking prenatal vitamins plus omega's on a daily basis. I will keep you posted! I will also look into the aloe vera drink and see if it's ok to take while trying to conceive.

jenny v: I think you're assumption is right about trying PTU for a while, bring down thyroid levels and then see if I would qualify for surgery then. I did this same regimen in 2016, taking anti-thyroid medication and then surgery consultation and I wasn't a candidate. I don't want surgery, but RAI is not an option at this time. Every time I take methimazole or PTU I slowly break out in a rash on random places on my body. I tried a few times stopping and then taking the medication thinking it was in my head but nothing worked. I have been back on PTU since Thursday and had some itching yesterday, but no rashes. Maybe my body's becoming old and forgetful and cannot remember if it likes this medication... kind of like how I forget where I put my keys every gosh darn day!


----------



## blackngold (Oct 28, 2011)

sorry for your loss and episode hope things calm down for you


----------



## Lovlkn (Dec 20, 2009)

I'd like to mention - when I was in the final DX phase for Graves I had hives really bad. This was prior to my starting any anti thyroid med's and it was discovered to be an almond allergy and at the time I was eating Hershey Hugs ( with almonds) and also drinking almond chocolate coffee.

I had taken allergy shots for environmental ( grass and trees primarily) for 8 years prior to this event and never could get past the 1/2 a dose without a reaction. Then I was tested 8 years later and had a bunch of food allergies that had developed and the grass pollen ones were just as bad so I was dumbfounded. I believe it was related to my immune system and possibly my thyroid dysfunction.

Post TT and stable on thyroid hormone replacement I no longer have this allergy, no any others ( except dogs, cats and dust) that I tested positive for just prior to my DX of Graves.

I wonder if your issue is simply your immune system being out of wack.


----------

