Graves Eye Disease and Hyperthyroid

Changing PTU Dosage/Frequency

A real quick post this evening.

I saw my endocrinologist this morning and explained that when he had me adjust my PTU dosage in early January from 7 days per week to 6 days per week, that a few days later after my first scheduled "skipped" dose I had Grave's symptoms reappear.  Not too severe, but I didn't feel 100% right.  I was fine in a day or so and then on week #2 of my second scheduled "skipped" dose the same thing happened but slightly less severe.  He said this was the first time he had heard of anyone having symptoms reappear when eliminating a dose by one day per week.  He went on to tell me it is much more common when reducing the dosage (lowering the milligrams that is) or going off the medicine altogether. 

Since the lowest dose of PTU available is 50mg, he suggested that the next time my lab results call for a dosage change we should consider splitting the pill in half vs. eliminating another day altogether.  One person posted a comment here some time ago advising that her doctor had her do this very thing so she could g--r--a--d--u--a--l--l--y reduce the dosage over time.  It has been suggested that the more gradual the decline/reduction in medicine and over a longer period of time the higher the likelihood you have of attaining remission, and the higher the likelihood it will last.  I should have my lab results back within 5 days so we'll see what the future holds.  More then!

Frequently asked questions regarding Grave's Disease & Hyperthyroidism

  I'm excited to share with you 31 frequently asked questions patients often have, as written by Mary Shomon on her thyroid-info site!  This is a very comprehensive list which includes everything from a broad definition of hyperthyroid, treatment for Grave's Disease, side effects of anti-thyroid drugs, side effects of RAI, and much more.  This is not just an excellent place to start for those of you who've recently been diagnosed with Grave's Disease, but Mary Shomon is a foremost author on the topic.  I recommend her books (along with several other authors) which you can find in the right-hand column of my blog for reference. 

Don't wait!  Click here for Mary Shomon's list of 31 Frequently Asked Questions patients often have about Grave's Disease and Hyperthyroidism.

 

PTU Side-Effects: Metal or Metallic Taste to Food

I've been taking PTU (Propylthiouricil) for quite some time now and I never put two and two together as it relates to the metallic taste in my mouth I have developed.  Until recently, that is.  For some reason I just noticed a strange taste to most of my food, and in my mouth in general, that prompted me to research any side effects of taking PTU and a metallic "taste."  And voila!  There IS such a thing.  What do you know. 

So I did a bit of research and found that yes, one of the side-effects of taking Propylthiouricil (PTU) does in fact include a metallic taste to food. 

Metallic taste you ask?  What is that?  Well let me just say it's a very strange aftertaste indeed.  You'll know it once you experience it. 

At this stage of Graves' Disease I'm happy to report that's the only side-effect I've experience from the medication (unlike Methimazole which I had a very hard time with) so I'm just going to enjoy my food, aftertaste and all, and count my blessings!

Questions to ask when diagnosed with Graves' Disease (#6): What are the potential side effects associated with various treatment options?

This question is closely related to Q4 that I previously posted.  It's very important that you discuss and weigh very carefully the side effects associated with each treatment option as you and your doctor consider which is best for you.

ATD PATH

First, let's start with the Anti-Thyroid Drug (ATD) path.  Here are some very basic questions you'll want to ask your doctor as you consider this treatment option.

1) What are the potential side effects associated with taking the ATD _________________.  (Fill in the blank with the name of the specific anti thyroid drug your doctor suggests.)  For example, some people experience abnornal hair loss with some (I did).  Others experience sluggishness (I did, I switched medicines).  Others experience no problems whatsoever.  What's important is you know what the potential side effects are so you know what to look for.

2) What are the possible side effects associated with taking a beta blocker, such as Propranalol?  (For those of you taking a beta blocker).

3) What if anything should I be worried about if I'm thinking about becoming pregnant?  Are there any side effects associated with various medicines I should be worried about?  (Yes)

4) What is the liklihood the ATD treatment plan will lead to permanent remission?

RAI PATH

Next, let's look at key questions you'll want to ask as you explore whether or not Radioactive Iodine (RAI) Therapy is right for you.

1) What is RAI therapy?  How does it work?  What are the long-term consequences of RAI?

2) What is the liklihood I will become hypothyroid?

3) Will I need to take a synthetic thyroid drug for the rest of my life?  What side effects are associated with those drugs?

4) Should I avoid close contact with people after the RAI procedure?  Why is this important?

5) What is the liklihood of my Grave's Disease symptoms intensifying following RAI therapy? 

6) Is there a chance the RAI procedure could worsen eye symptoms (proptosis) that I've experienced?

7) How successful is RAI?  Is there any chance I may have to repeat the procedure?

These are basic questions.  You'll want to explore them thoroughly with your doctor.  And ask many more of your own.  My goal here is not necessarily to answer each individual question, although I do write about some of them throughout my blog.  Rather, my intent is to get you thinking about the kinds of questions you will want to ask as you prepare to discuss your treatment options with your doctor. 

Grave's Disease is serious business.  Finding the right treatment option that is best for you is too. 

Remember, there is no one-size-fits-all approach.  We're all unique even though many of us will experience similar symptoms over time.  How each of us responds to treatment will vary from person to person. 

Let me leave you with a few final thoughts:

DO ask questions.  Don't hesitate for one minute.

Ground yourself in KNOWLEDGE.  Self-discovery is a beautiful thing.

Find an INFORMED endocrinologist who is willing to take the time to discuss all treatment options with you. 

Explore ALL potential side effects associated with each treatment option.

Be a PARTICIPANT in your personal treatment plan.  It's YOUR body after all.

Remember to be PATIENT.  And be a good patient.

Hope the above helps.  Meanwhile, if anyone has any other suggested questions to ask, by all means post a comment below!

Thanks!

Hair loss & Propranalol? (Inderal)

Are you subject to hair loss when taking Propranalol?  You betcha. 

Back in June of 2007, I blogged about the side effects (hair loss) I experienced while taking Methimazole.  You can click Hair Loss & Methimazole to learn more.  If that weren't enough, I felt terrible the entire time I took it.  It was after I stopped taking it that I realized how much hair I'd lost--you could see it growing back in in a large volume of short stubby growth all around my head.

You may also have read on my blog that I made the switch to PTU when I had to go back on anti-thyroid drugs.  I also went back on Propranalol (Inderal).  Now I've noticed that months after stopping the Propranalol that the same stubby growth is back!  How about that! 

Seems as though the hair loss wasn't just limited to the anti-thyroid drug.  It was also a side effect of the beta block I took.  Talk about a double whammy! 

Remember, everyone reacts differently to medicine.  This is what happened in my case.  You do need to be prepared for the possibility because, if like me your hair is thin to begin with you'll notice.  Maybe no one else will.  But you will.  That's another tough one to handle.  Two medicines causing your hair to fall out.  Top that off with bulging eyes, retracted eyelids, and, well, you get the picture.

It was much worse while it all happened to me than I realized at the time.  That's a good thing.  I just plowed on with life trying not to think about it. 

Luckily, your hair grows back when you stop taking the medicine.  Even if it comes back in in the form of short stubby growth that sticks out everywhere, especially on those balmy days when you're having one of your very best 'hair days.'

My advice--I can almost guarantee no one else will notice but you.  It could be much much worse. 

Focus your attention on your overall well being, tackling the heart issues you may be facing, and doing everything you can to be healthy outside of the medicine you're taking.  It's not just about the medicine.