[Kimberly]

in reply to: PTU and Liver failure #1065638

Just to add to what Ski said, when an adverse action with a drug is reported, the reporting form asks for the start and stop dates of when the patient was taking the drug. So I’m guessing that’s where the information came from on side effects usually occurring early in treatment. Interestingly, I’ve now heard two doctors from opposite sides of the country mention 90 days as the period in which side effects from ATDs are likely to occur. However, the new FDA warning uses a 6-month benchmark. I don’t know if there is conflicting info out there…or if the FDA is trying to err on the side of caution.

I have not seen any studies that specifically addressed long-term use of PTU. I know of one study that looked at methimazole use over a 10 year period and concluded that long-term use was safe. However, it was a fairly small study.

The FDA has tracked 32 serious cases of liver injury since they started tracking adverse reactions in the late 1960s. Out of this total, if you combine the adult and pediatric cases, there were 13 deaths and 11 liver transplants as a result of taking PTU. With methimazole, there were 5 cases over this same time period, 3 resulting in death. None of the methimazole cases were pediatric. So the risk is fairly small; however, as patients, we DO need to be aware of this risk and make our treatment decision accordlingly.

[Kimberly]

in reply to: PTU and Liver failure #1065635

We had a seminar on Graves’ Disease in Phoenix yesterday, and the PTU issue came up. Our presenter re-iterated what we had heard at past conferences, which is that serious side effects *usually* occur within the first 90 days of starting on ATDs. (Keeping in mind that stopping and re-starting the meds "resets" the 90-day clock). Our presenter believed that if a patient had been on PTU long-term, was not experiencing side effects, and *chose* to continue with that course of treatment, that is an acceptable option.

[Kimberly]

in reply to: NY Times piece on thyroid disease #1065502

This piece was really nicely done. Thanks to Ski, James, and all who participated!

It’s tough to get press coverage for Graves’ Disease, as it’s not perceived as a "sensational" type of news story. However, last I checked, 100 comments had been left on the NY Times web site about this topic…so it is clearly close to many people’s hearts!

[Kimberly]

in reply to: Kidney Stone… update 5/27 #1065535

Oh, no! I’m so sorry to hear this. You always seem to deal with life’s challenges with common sense, determination, and a sense of humor…so I know you will get through this and get yourself back to 100%.

Take care!

[Kimberly]

in reply to: Having a hard time dealing with Graves. #1065673

Ski wrote: Many patients here are successfully managed on low doses of ATDs and they are very happy. Regulating thyroid hormone levels in either case can be tricky and time consuming. The only advantage to having no thyroid is that you don’t have "spikes" in thyroid hormone levels when antibodies become more active than they’ve been in the past, and I’ll let the longterm ATD patients here jump in to let us know how often that’s actually happened.

I’ve been on ATD’s for about 2 1/2 years. I’ve had 3 "spikes" — and I suspect they were all brought on by stress. (I’m dealing with the third one now). I can tell when this is happening, because my heart rate starts to go nuts again. So far, I’ve been able to get things back under control with small dosage "tweaks". (Usually 1/4 or 1/2 of a tablet). My body seems to respond pretty quickly to the meds, so others may have a different experience to share.

Agree with Ski and Bobbi that you need to keep fighting for your right to treatment!

[Kimberly]

in reply to: nausea, loss of appetite, other symptoms on synthroid #1065684

Oops, I also meant to mention that I experenced hoarseness of voice about the time I was diagnosed with Graves’, although I don’t know if there is a scientific explanation behind this. It has mostly subsided, but I still have occasional issues. It’s VERY frustrating when it happens when I am trying to speak in public!

[Kimberly]

in reply to: nausea, loss of appetite, other symptoms on synthroid #1065683

Kaeljia – I’m sorry you are not feeling well — and that no one at home seems to understand what you are going through. ” title=”Sad” /> Trust me, everyone on this board has "been there, done that" — so feel free to vent here!

Having out thyroid levels out of whack can absolutely affect our emotions, so please don’t be so hard on yourself for getting sad and/or angry over things that never would have bothered you before. Hopefully, this will start to subside the further along you get in your healing process.

You mentioned that your symptoms might be psychological. Yes, sometimes our metal state *can* end up causing physical ailments. However, have you had a complete physical recently? I think you owe it to yourself to make absolutely sure that there are no other physical issues going on besides your Graves’. Also, keep in mind that the "normal" range for thyroid function tests are extremely wide. So although you might be "normal", your levels might not be at a point that is OPTIMAL for YOU.

Hopefully, you have a doctor who will work with you and keep searching until you can get some relief from your symptoms. Keep fighting for yourself — you DESERVE to feel good again!

Finally, I don’t know where you are located, but if you check the home page at http://www.ngdf.org, you can see all the different areas that have in-person support groups. If there is one near you, that would be a great way to get some extra information, support, and understanding as you are working through this process.

Best of luck!

[Kimberly]

in reply to: PTU and Liver failure #1065630

Sorry, my intent wasn’t to push one treatment option over the others, but rather to point out that I don’t think of myself as having a "diseased thyroid" — I think of myself as having a "defective immune system". My thyroid would be just fine if those darn thyroid stimulating antibodies would leave it the heck alone. ” title=”Very Happy” /> (Of course, patients who develop a serious goiter or who lose thyroid function after years of dealing with Graves’ have a defective immune system *and* thyroid).

Guidelines surrounding PTU would be an interesting subject for the next conference. The way that I read the FDA’s warning, doctors are being warned to not *initiate* PTU treatment for new patients, unless there are specific reasons that they cannot pursue methimazole, RAI or thyroidectomy. It doesn’t specifically recommend that PTU use be discontinued in existing patients. Of course, the liver issue is a real threat, so patients and doctors do need to give this serious consideration.

I would never *tell* anyone to use ATDs, in light of the potential liver and white blood cell complications. But I also know patients who have really struggled to find their "sweet spot" with replacement meds after RAI and thyroidectomy, so I wouldn’t tell anyone that’s the best choice, either. The "best choice" is the one that patient and doctor agree upon, with full knowledge of the risks and rewards.

[Kimberly]

in reply to: PTU and Liver failure #1065626

Bobbi wrote:And, throwing in another comment on PTU and liver failure issues. The reason I chose to have my thyroid removed was because I realized that by any definition of the term, my thyroid was permanently diseased. It made little sense to me to risk my healthy liver to "save" a permanently diseased organ. I offer this as another perspective.

Just had to throw in my 2 cents on this issue, as everyone has a bit different perspective. My line of thinking in choosing ATDs as a treatment option was that it was my immune system, not my thyroid, that was defective — and that I had the best shot at addressing the immune system while preserving my thyroid with ATDs. One study that was discussed at last year’s conference showed that there is a period after RAI where the antibody activity actually increases, and then the antibodies remain somewhat elevated (although lower than before treatment) for up to 5 years.

Obviously, all the treatment options have pros and cons, so this is a decision that should be made after consulting one’s doctor and doing as much personal research as possible.

[Kimberly]

in reply to: Eye Pressure #1065656

erobinson219 – Sorry, I know that I replied to this post a while back, but it seems to have gone "poof"! Weird. I picked up a book on Graves’ Orbitopathy at last year’s conference, and it states that some Graves’ patients with eye disease *do* tend to have elevated pressure. The book cited one study that 60+ percent of Graves’ Eye Disease patients had some level of increased pressure, especially when gazing upward. There are some very specific tests that can help diagnose Glaucoma, so this is likely why you have been referred to a specialist.

Hope this helps!

[Kimberly]

in reply to: Watch Illinois Support Group mtg tonight at 6:30 CST #1065645

Wow, what fabulous technology! This will be a great way to share information with patients all over the country. Congrats on getting this up and running!

One comment — it was good that Dr. Girgis repeated the questions from the audience, as they are otherwise difficult to hear.

[Kimberly]

in reply to: PTU and Liver failure #1065617

kristenb – The information about liver failure with PTU isn’t new; however, the FDA sent out a news release this week regarding new guidelines and labelling requirements, so that is probably what your doctor is referring to. The guidelines don’t specifically say that existing patients need to switch meds; however, it does recommend that doctors not *initiate* treatment with PTU unless there are extenuating circumstances (such as pregnancy). I’ve listed the patient info from the press release below.

Also, the statistics on deaths and transplants aren’t annual — they go back to when the FDA first started tracking adverse reactions, which I believe was in 1969. While severe liver damage or failure is a RARE side effect of PTU, the reason the warning was issued is that the incidents with PTU occured with significantly greater frequency than with methimazole.

Additional Information for Patients

* Be aware that severe liver injury has occurred in patients taking propylthiouracil.
* Read the Medication Guide when picking up a prescription for propylthiouracil. It will help you understand the potential risks and benefits of this medication.
* Contact your healthcare professional if you have fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of your skin or eyes while taking propylthiouracil.
* Propylthiouracil may be the treatment of choice during and just before the 1st trimester of pregnancy (weeks 1-12). Talk to your healthcare professional if you are pregnant (or plan to become pregnant) and are taking a medication to treat hyperthyroidism.
* Tell your healthcare professional about any medication you are taking or medical conditions you may have before taking propylthiouracil.
* Do not stop taking propylthiouracil unless told to do so by your healthcare professional.

[Kimberly]

in reply to: Watch Illinois Support Group mtg tonight at 6:30 CST #1065643

FYI – This link is for a streaming presentation by an endocrinologist that will take place on Thursday, 4/22 at 6:30 p.m. Central Time. The presentation is being conducted at the GDF’s Belleville, IL support group. I believe that if we access this site on Thursday, we should be able to access a link to the presentation. Obviously, they are FAR more technologically advanced than I am!

[Kimberly]

in reply to: Graves and Stomach Issues #1065658

Hello – When we are diagnosed with one autoimmune condition, we are statistically more likely than the general population to have a *second* autoimmune issue, so it wouldn’t be unheard of to have both Graves’ and Celiac Disease.

If you truly suspect Celiac, there are blood tests that can screen for Celiac without requiring a biopsy. However, in some Celiacs, the blood tests aren’t conclusive.

I experienced bloating issues for the first few months after my diagnosis of Graves’. I can’t say for sure that they are related, but I’ve heard stories from other Graves’ patients who had numerous digestive issues when they were still hypER.

Another issue to consider is a possible food allergy/sensitivity, such as to dairy and eggs. There are blood tests that can check for these sensitivities, although they are NOT cheap and NOT 100% accurate. However, they can sometimes point you in the right direction if you truly suspect an allergy.

I did one of these programs for 90 days following my diagnosis. The diet was very high maintenance and very stressful…and it didn’t really have an impact on the course of my disease. I’m not sure I would do it again, although I *did* find that my digestive system seems to be happier if I don’t load up on tons of wheat and dairy all at once.

My advice to someone who is considering a restrictive diet as a way to manage their Graves’ is that if it makes you FEEL better, go for it. But I would be wary of any food program that is super high maintenance and doesn’t appear to be giving you any benefit. (Of course, if you do have Celiac, you MUST avoid gluten for life — no exceptions on this one.)

[Kimberly]

in reply to: ATDs #1065739

Hi Corinne – Everyone’s experience is a little different. I actually felt the worst during my first 10 weeks on Methimazole, as my levels fell from hypER to the bottom of the "normal" range during that fairly short period. I felt very fatigued and could barely make it through the workday. I finally started feeling better when my doctor reduced my dose and my levels moved closer to the middle of the "normal" range.

Are you receiving copies of your lab reports? It’s possible that you are in the "normal" range, but your current level is not OPTIMAL for YOU. The "normal" range is pretty wide, and different people might feel better on the low end, mid-range, or high end.

Best of luck!

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