[misslex]

in reply to: Tapazole allergy #1180059

Hi Rbc,

While on 5 mg/day of methimazole I began itching like crazy and my eyelid swelled up. I went off of the methimazole and tried PTU which gave me mouth sores. I was taken off of the PTU and decided to try the methimazole in combination with a daily antihistamine, which knock on wood, has worked so far. I am taking 5mg methimazole in conjunction with a Clarinex every other day and so far I have not experienced the itching or the swelling like before. I would see if your doctor is willing to try PTU first, or methimazole in conjunction with antihistamines before immediately jumping to RAI.

[misslex]

in reply to: Just got diagnosed:( #1179863

Hi Moonbeam,

Welcome! I’m sorry to hear you’re in the same boat as the rest of us. I know it’s a shock to be diagnosed. I’m still reeling from my own diagnosis. The best advice I can recommend to you is to try to take it one step at a time and relax. Don’t allow yourself to spin out of control with worries, and be prepared for things to go slowly. I was diagnosed for sure in April after a sonogram of my thyroid and a Radioactive Iodine Uptake test. In that time I have:

– Been put on 10 mg/day of MMI
– Had to stop the MMI due to my eyelid swelling up after 3 weeks of great results
– Started 50 mg/day of PTU
– Had to stop after 1 week because of mouth ulcers
– Been put on 5 mg of MMI and an antihistamine every other day – waiting to see if there will be a reaction

It’s super frustrating and anxiety inducing, but with some patience and time, your doctor should be able to help you get to a point where you’re feeling good and the chances of approaching remission are better. Best of luck to you and feel free to lean on us – we’re all going through the same thing here.

[misslex]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179787

Hi Everyone,

My appointment went pretty well. My Endo agreed that I am probably not in remission since I’ve been having trouble sleeping and heart palpitations in the week or so I’ve been off of both PTU and MMI. He agreed to put me on a low-dose of MMI (5 mg/day) combined with a daily antihistamine. Fingers crossed that it works out!

[misslex]

in reply to: Double-barrel good news ! #1179805

That’s great news! So glad it’s working out for you!

[misslex]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179786

Naisly wrote:

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

It does! Thank you, Naisly!

[misslex]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179785

Naisly wrote:

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

It does! Thank you, Naisly!

[misslex]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179783

Thank you, Kimberly!

[misslex]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179781

bigad wrote:

misslex wrote:

I understand that there is an antibody test that can help determine whether or not you are actually in remission – does anyone know the name of that test so that I can request it at my appointment tomorrow?

Antibody tests (TRAb, TSI) can be helpful in predicting which patients are in remission.

Thank you!

[misslex]

in reply to: Reaction to PTU #1179736

Kimberly wrote:

Hello – I would suggest reviewing the latest medical guidance from the American Thyroid Association and American Association of Clinical Endocrinologists and printing the relevant pages out for your doctor. This is the guidance that states that for “minor” skin irritation with methimazole, you can keep taking the drug in conjunction with antihistamines. You can find the document in the second link in the “Treatment Options” thread in the announcements section of the forum. The section on skin reactions is on page 604 of the original journal article, or page 12 if you download as a PDF. As to whether your reaction was “minor” enough to warrant giving Methimazole another try, that’s a judgment call that a doctor will need to make.

Itching/hives can be a reaction to the meds, or it can also occur with hyperthyroidism itself – it’s hard to say after the fact which issue you were dealing with.

If you do decide to seek a second opinion, the “Looking for a Doctor?” thread in the announcements section of the forum has some nice search engines by city/state/zip.

As for dropping the meds entirely, antibody testing would normally be recommended before doing this in order to gauge the risk of recurrence. But the fact that you were subclinical to start with could possibly give you a better chance, as many cases of subclinical hyperthyroidism are monitored without any treatment at all.

Take care!

As always, thank you for the informed and informational response, Kimberly. Much appreciated!

[misslex]

in reply to: How to talk with friends/family about Graves’ #1179667

CycleColo2013 wrote:

Hi Misslex,
Glad to see you on the site. I am relatively new too. I joined a few weeks ago during one of my fearful pre-TT fits of uncertainty. This means most of the scrounging for articles and forum reading I’ve done so far through the site has been about thyroid surgery and what to expect and not necessarily about the emotional effects and support networks we seek.

Brondack may have been referring to me when he said Bill – unless there’s another Bill participating on the site. Us guys with GD are small in number…

I love what has been said so far… it helps to read as much as you can and to remember it does affect everyone differently. You will also find many opinions on what to do – whether it is small decisions about diet and exercise or big decisions about medication, RAI, surgery. The good news is you do not have to make any decision today, especially if you are apprehensive and uncertain.

For myself, I’ve seen some dark places some of which are thyroid related. At times it has been difficult to believe things might normalize. And I can become overcome with fear and dread which increases my anxiety even more. This happened most often when my numbers are off. It quite easy to be wound up about what to do, what will happen, and the what if. Like you, I am lucky to have a supportive partner. He has been extremely patient with my mood swings, irritability, irrationality, fear, short fuse and depression. A great source of support, no doubt but as my total support network – way too much to expect. My mother, siblings? Fuggedaboutit! In the long run it has been the therapist and two or three close friends I’ve been able to level with that have helped. If they didn’t know about GD before, they were happy to learn. With them I could rant and rave and be scared, and I would be reminded by them that it’s all o.k.

So while you seek out that support, let us here all tell you, IT IS GOING TO BE OKAY! You will find the right path for you, you do not have to do it today, and if you are not choosing today, you don’t have to worry today about what might happen with whatever path you choose.

I hope this is helpful.

One of the more surprising things I’ve experienced recently when I finally abandoned the “post-surgery Jacqueline Onassis incognito” look every time I left the house, is that I repeatedly found myself having a similar conversation with friends and acquaintances I bump into…

Friend or acquaintance: What’s up with the scar?
Bill: I had my thyroid taken out.
Friend or acquaintance: Wow, is everything okay?
Bill: Yes. For many years I’ve had Graves Disease, essentially an overactive thyroid. I’ve had success managing it with medication, but it became clear it was never going to go into remission and it was time to do something about it.
Friend or acquaintance: Wow. That’s great. What does the thyroid do?

Wow, indeed. Wishing you the best in sorting it out, hang in there.
Bill

Thanks, Bill! You all are so supportive and wonderful, I’m really glad to have found this forum.

[misslex]

in reply to: How to talk with friends/family about Graves’ #1179662

Boomer wrote:

Hey there Misslex!

Lots of great suggestions here for sure. My experience with others has been similar to yours:

My friends are interested and informed as is my sister. My folks, bless their hearts, don’t really grasp what I’m up against. While they have been supportive in some ways I feel a bit hung-out-to-dry in others. They’re both elderly and, being children of the Great Depression, they’re pretty stoic and tight-lipped. It’s okay.

I gave them a few links to some of the articles here and some handouts from my Endo and I think that will help- after all there is a LOT to absorb when learning about Grave’s. Maybe you could do the same- allow them to read at their leisure rather than overwhelm them with loads of verbal info.

No matter the case out there in the wild you can always come here for support, info, and shared experience. Good stuff!

Hang tough, be patient, and we’ll get through this. After all it’s “just” a little Thyroid issue.

NOT!

Love and health to you and yours,

Boomer

Hah! Thanks, Boomer – I love your sense of humor re: Graves’. Definitely something I could use more of. Great suggestions, too! Thanks!

[misslex]

in reply to: How to talk with friends/family about Graves’ #1179661

Kimberly wrote:

Hello – I think that sometimes the issue with getting support for Graves’ is that people either (1) don’t understand it or (2) when they find out it’s a thyroid issue, think that “you just take a pill for that”. If your family would be willing to learn, we have a number of free patient bulletins on our web site at http://gdatf.org/about/about-graves-disease/patient-education/ [gdatf.org] One that might be of particular interest is #28 – An “Open Letter to Husbands of Graves’ Patients”. We also have a lot of content on our YouTube page featuring presentations on Graves’ from nationally recognized physicians: http://www.youtube.com/user/GravesAndThyroid [youtube.com]

(Note on links: if you click directly on the above links, 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).

Talking to your family about what you need in terms of support can be helpful as well, as those around us can’t be mind readers. Some people really appreciate friends and family being very involved in attending doctor’s appointments and providing general support and encouragement. However, other patients prefer to just be left alone to manage the condition on their own. Still others fall somewhere in the middle!

I like Bill’s comment about trying not to imagine the “worst possible extreme” with Graves’. The majority of patients will NOT have the most serious complications with Graves’ – and the extra worry doesn’t help the healing process!

Take care!

As always, thanks, Kimberly!

[misslex]

in reply to: How to talk with friends/family about Graves’ #1179660

brondack wrote:

Hi misslex,

Bill here and I am one of the minority (male) lol.

I would agree with all of the suggestions that Karen made about being you own advocate – but relying on who ever is close to you as well. The comment about friends / family not seeming to care is quite true since often there are no blatantly visible symptoms – so they think it is nothing to worry about. We all know how incorrect that is.

Yes, you will get a lot of support from the other members of this forum. But, I would also caution you about one thing. This disease affects everyone differently – some much worse that others, some with ‘group A (my term)’ symptoms and some with ‘group B(again my term)’ symptoms, and perhaps a very few with both and some with only mild versions of some symptoms . In your reading of all of the posts here, you might get very worried about experiencing all of the symptoms – and in the worst possible extreme. Is that possible?, Yes of course it is – but it is also very unlikely. So, take everyone’s personal statements as a fact that is true for them, but does not mean that it will be true for you.

You and your doctors need to assess your own situation and take the steps to improve it.

Read as much as you can about Graves, ask questions and take others’ advice after you have considered it carefully.

Good luck and we are all here to help you get through this – as we are going through it ourselves.

Hi Bill! Thanks! It’s good to know that not everyone experiences all the bad that comes with Graves’ – it’s definitely something that I need to keep in mind. Thanks for the support!

[misslex]

in reply to: How to talk with friends/family about Graves’ #1179659

karenz516 wrote:

Hi misslex, my name is Karen, I am 57 years old and was diagnosed with Graves Disease on 12/6/12. Please know this site helps with venting our frustrations and answering questions, it is a big help to know that you are not alone. My belief is knowledge is power, I bought every book I could on Graves Disease/ Hyperthyroidism and read, read, read. I wanted to be informed and understand what was ahead for me. My story is, I had lost 30 lbs over a few months and my husband was getting worried, my family ambushed me and dragged me to the docs who ran a bunch of blood work and immediately got me in to see an endo who immediately hospitalized me that day! Talk about being freaked out! My heart rate was 180 bpm. I was hospitalized for two weeks and received RAI on 12/14/12. It was up an down for awhile but I can honestly say that now I am feeling much better than I did. I went hypo in April and started on Synthroid. My husband has been there for me 100%!! Quite frankly, I don’t set high expectations with friends or co-workers because when people look at me I don’t look sick, but not feeling well, dizziness, headaches, extreme fatigue are not visible signs so people do not really understand all that is going on. Talking that through with your therapist is a great idea! I too was scared of what Graves would bring. I weighted 120 lbs at my sickest and probably put 12 lbs. back on and trust me, I eat a salad and yogurt every day for lunch. I went into my endos office and said “this is not happening, you need to fix it”. hah! Some people do not convert T4 to T3 and might need to add Cytomel which is my next speech when I go to the endo. You have to be your own advocate, read, ask questions, get copies of your labs, speak up. You will be amazed at how strong you will be when YOU are in control. I personally have not had any eye issues as of yet, so if you do not, don’t fret about what might happen. You will learn a lot from this site and there are people who bring great humor (boomer comes to mind), that will make you smile and feel better. We are all in the same place you are, lean on us for support!

Thanks, Karen! That’s all really great to know! I look forward to learning more from all of you!

[misslex]

in reply to: Newly Diagnosed, Reacting to MMI and Starting PTU #1179585

amosmcd wrote:

Hi!

I started out on MMI, but after 2-1/2 months I had to switch to PTU. I wasn’t allergic to MMI, but it made me feel sedated, exhausted, brain dead and very fatigued. My endo said the same thing could happens with PTU, but it didnt. Neither drug controlled my thyroid levels on a consistent basis, and I was worried about long term use and liver problems, which is why I chose to have TT.

Hopefully the PTU will work great for you. Only annoyance for me was the very bitter taste, but not everyone tastes that.

Amy

Thanks, Amy! So far I haven’t experienced the bitter taste, but I am feeling more tired and “fuzzy” than I was when I was on MMI – good to know that this is something other people have experienced. How did TT work out for you?

[Author]

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