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#1 March 22, 2012 15:49:47

adenure
Registered: 2012-03-22
Posts: 491
Profile  

Hello! Newly Diagnosed & New to Forum

Hi all,
I was diagnosed with GD last week. Funny how it all came about. I took azithromycin (Z Pack) for a sinus infection. I had a terrible allergic reaction- heart palpitations (120 bpm), anxiety attacks, crying, couldn't get out of bed, hard time breathing. After the antibiotic got out of my system, I felt better, but not myself, not quite “right”. My heart rate was still high, I was losing 1 lb. a day (a total of 13 lbs.), diarrhea, anxious (although no outright panic attacks), crying, feeling “weird” and “floaty”.

The doctor ran a bunch of tests and discovered my thyroid was off. My T3 was 171, My free T4 was 1.92, TSH- .01, and Thyroperoxidase Antibody was 19.7. Another antibody/ immunoglobulin test was 234. I'm not sure what all the tests mean exactly, but the endocrinologist said Graves Disease and has prescribed 5 mg. of Methimazole daily. He said to take 10 mg. a day for the first week to help with symptoms, and then lower the dose to 5 mg. after the first week, but as I'm really sensitive to medicine, I decided to start with the 5 mg. I've felt like this for a month already, I figured I could deal a little longer I guess. My primary prescribed a beta blocker, but the endo. said that as long as I don't have anxiety and my heart rate is under 100, I don't have to take it. My heart rate is 82 if I'm resting, sometimes 90's low 100's if I'm more active.

I don't want to take a lot of medication because I'm breastfeeding my 4 month old. The doctor said that the Methimazole should be fine for him as I'm on a low dose. I had his blood drawn today to establish a base line to make sure the medication isn't effecting him in anyway. I also have 3 other children, and I homeschool them all, so I'm hoping to feel strong, healthy, and myself again soon.

I decided to post to find support, advice, and help. I'm glad the doctor started me on a low dose, and I trust that his knowledgeable, but based on my labs, do you all feel that 5 mg. will help even things out? I don't want to take more than I need, but I want to feel well. He ordered bloodwork to be done in 2 months. (every 2 months for a year) and my next apptmt. is 3 months from now. Well, thank you for reading this and any support or advice. I'm also trying to not eat seafood or dairy (very little dairy) from what I read about iodine and hyperthyroid problems. Thank you again.

Alexis


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#2 March 22, 2012 20:13:27

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3404
Profile  

Hello! Newly Diagnosed & New to Forum

Hello and welcome! We're not doctors here, so we can't comment on dosages. However, I would encourage you to keep tabs on your symptoms and call your doctor's office to see if you can get in quicker if you aren't seeing any relief in a few weeks – or if your symptoms are getting worse. Many times we Graves' patients find that we need to be the “sqeaky wheel” in order to get the treatment that we need.

Anti-Thyroid Drugs start working right away to block the production of new thyroid hormone, but it can take some time for the body to “burn off” its existing stores of excess thyroid hormone.

It's helpful to keep hard copies of your labs as you go through this process. The levels for T3, T4, TSH, etc. are only useful in the context of the “normal” range, which can vary from lab to lab. It's good to keep tabs over time of how quickly your levels are changing.

As for diet, I would encourage you to discuss any major changes with your doctor or a nutritionist. Some patients do choose to significantly limit fish and dairy in an effort to limit iodine intake; however, you don't want to miss out on major nutrients while your body is starting to recover from your hyperthyroidism. The majority of doctors I've heard from suggest limiting exposure to *huge* sources of iodine, such as the seaweed wraps that come with sushi.

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 March 23, 2012 04:11:16

Bobbi
Online Facilitator
From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
Profile  

Hello! Newly Diagnosed & New to Forum

Hi, Alexis, and welcome to our board.

We women typically blossom with Graves at times when we are undergoing major hormonal changes – i.e. puberty, pregnancy/childbirth, or menopause. Statistically, that the the most likely time for us to get our diagnosis. I think it's particularly hard to endure when we have little ones in our care. I do hope you are feeling better soon.


[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

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#4 April 19, 2012 09:15:19

Gina
From: Ohio
Registered: 2012-04-18
Posts: 19
Profile  

Hello! Newly Diagnosed & New to Forum

Hi, I'm new to this forum and new to Graves. I came across your post here and something kinda surprised me. I too was on the z pack when my thyroid issues started. I doubt it but I wonder if there is a link to the z pack and hyperthyroidsm?

Edited Gina (April 19, 2012 09:38:23)

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#5 April 19, 2012 09:40:38

Savvyrat
Registered: 2012-04-16
Posts: 7
Profile  

Hello! Newly Diagnosed & New to Forum

Welcome, Alexis! I, too, was diagnosed last week! My symptoms started In earnest right after weaning my daughter, though may have been around the year before, starting right after her birth. It's crazy how our bodies can be so affected by hormonal changes.

I hope you find your answer!

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#6 April 19, 2012 14:36:14

adenure
Registered: 2012-03-22
Posts: 491
Profile  

Hello! Newly Diagnosed & New to Forum

Hi Gina,
How weird!!!! The z-pack thing. Looking back, I realize that I had some “woozie” light headed feelings here and there; I just figured it was me recuperating from child birth and being tired. The Z-pack though sent me into a whirlwind! My heart palpitations were terrible, I had really bad panic/ anxiety attacks (never had them before), had a hard time breathing, sweaty feet & hands- just crazy. After 2 weeks and the z-pack was out of my system, I felt better, but not myself. The first doctor was convinced I had an anxiety disorder, told me to breathe into a bag & suggested xanax and started his diagnosis with “I don't have a crystal ball, but…” okee dokee…. on to doctor #2! Although I know he was doing his best I guess. Fortunately, the 2nd doctor ordered blood work, although she didn't say anything to me about my TSH being .01. Finally, I went back a 4th time and my primary ( I have Kaiser, hence the doctor ping-pong ball game) noticed my TSH level and ordered the other tests and referred me to an endo- thank goodness! Now, I think I'm on the right path finally- almost 5 weeks into 5 mg. daily of methimazole and I'm starting to feel better. I get bloodwork done on May 16th.

Hi Savvyrat, I'm still breastfeeding my 5 month old- yeah, those hormones really do us in sometimes! It's amazing how they can really screw you up! We have 4 boys, and I don't think I'll probably have anymore children bc I don't want to go through this again if I can prevent it. I guess child birth can trigger Graves. I am happy with my family and just want to be well.

Alexis


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#7 April 22, 2012 11:01:42

Jml55
Registered: 2012-04-21
Posts: 4
Profile  

Hello! Newly Diagnosed & New to Forum

Hi,
I am a new mom as well to a 7 month old. Started losing all this weight and feeling really depressed which led me to doctor who diagnosed hyperthyroidism and sent me to endo. I'm breastfeeding so I'm on ptu 50mg three times a day. I'm also on Zoloft 100mg for the depression but feeling worse rather than better. When will it get better?

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#8 April 22, 2012 11:07:58

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3404
Profile  

Hello! Newly Diagnosed & New to Forum

Hello and welcome! Every patient is different, so it's hard to predict when you will start to see some relief.

Anti-Thyroid Drugs (like PTU) start working right away to block the production of new thyroid hormone, but it can take some time for the body to “burn off” its existing stores of excess thyroid hormone. This can typically take a few weeks.

Just from a personal perspective, I started on Anti-Thyroid Drugs in early October, and it was around the first of the year when I started feeling more like myself again. One thing to watch is to make sure that your doctor is making dosing decisions based on your Free T4 and T3, and *not* just on TSH. You can read more about this by checking out the “Treatment Options” post in the announcement section of this forum and reviewing the section on Anti-Thyroid Drugs in the ATA/AACE guidance listed. It's only a few pages and is fairly easy reading.

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#9 April 22, 2012 15:17:10

adenure
Registered: 2012-03-22
Posts: 491
Profile  

Hello! Newly Diagnosed & New to Forum

Hi JML55,

Welcome I'm breastfeeding too and am taking methimazole. Just in case you ever needed to switch meds, methimazole is considered safe for breastfeeding (up to 20 mg. daily). I take 5 mg. It is an L3 and not an L2 (like PTU), but it is still considered safe. Also know that many times, a medicine is considered L3 because the studies aren't as prevalent as with an L2 (or L1 medicine). My pediatrician did a lab for my baby to establish a base line of his TSH and he'll have his blood done again in a month or 2 to make sure everything is okay, but she said (as well as my endo) that it shouldn't cause any problems. Our babies wouldn't have any liver issues to worry about because they don't actually metabolize the drug. Also, a friend of mine who is a LLL consultant breastfed all 4 babies on both methimazole & PTU at one time or another & they are all fine.

I started to feel a little better after 2 weeks on the methimazole, but I can say that it's only been in the last few days (5 weeks into treatment) that I'm starting to feel better all around, more like my old self, but not completely.) I'm hoping that in mid-May when I get my labs done, my numbers will show improvement. The hardest thing is being patient and realizing it's a long journey. Try to stay positive and take each day at a time- accept any help that anyone is willing to give. I couldn't have made it through the last 2 months without my family & in-law's help and my husband too. I was pretty useless for a good month- almost 2 months before I got on the methimazole and it started to work. I have 3 other boys besides my 5 mo. old, so I needed help! Plus I homeschool; fortunately, the boys are ahead in their school, so I was able to take a few weeks off and my mother in law worked with them some & they read a whole lot! But now, I'm able to teach them again about 2 hours a day and they do 2 hours a day of independent work as well. Only one month left in our school year, so fortunately, summer break will be soon upon us!

Do you think your depression is PPD? I had PPD with my 1st son; I never treated it though. Actually, my 2nd son was born 15 1/2 months after my first, and believe it or not, his birth healed me of my PPD! My 1st son's labor and delivery was traumatic and very difficult- plus, he never was able to breastfeed, so I felt like a total failure as a mom. For me, the hyperthyroidism didn't make me depressed, but it did make me anxious, panicky, and I felt a lot of despair as if I'd never get better and this would be my life from here on out. It was pretty debilitating for a month or so; that is why I am so grateful for my family. Being on methimazole now, and feeling better, I know that the way I was feeling was due to the hyperthyroid, not any real depression or anxiety separate from Graves. It's pretty crazy how our thyroids can really mess us up like that. I'm grateful to finally be on a path to wellness & normalcy- here's to good numbers and tolerating the medicine!

Stay strong and positive & let us know how you're feeling as the weeks progress.

Alexis


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#10 April 23, 2012 06:56:39

Gina
From: Ohio
Registered: 2012-04-18
Posts: 19
Profile  

Hello! Newly Diagnosed & New to Forum

Alexis, I've been through the same thing with the doctors. I've seen an ENT, a GI doc, and of course my primary and was diagnosed with other things before I was properly diagnosed with graves. Diagnosed April 16th.
I've had panic attacks and anxiety for quite a few years so I don't link that to graves.
As far as the z pack goes, I've taking it numerous times before and I was fine. It's weird how it made you feel. Maybe you are allergic to it. Take care, Gina

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