Forum Replies Created
-
AuthorPosts
-
in reply to: Treatment after Agranulocytosis #1184414
Hello – A couple of notes…
In Graves’ disease, the immune system isn’t weakened – it’s misdirected. Instead of defending our bodies against viruses and other foreign invaders, it mistakenly attacks healthy tissue. (Of course, with agranulocytosis, the immune system does become extremely weak, but this is a side effect of the meds).
As patients, we should all seek the advice of a qualified endocrinologist, but in the end, we are the ones who have to live with the decision! As the latest medical guidance from the American Association of Clinical Endocrinologists and American Thyroid Association notes,
“Once the diagnosis has been made, the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected
speed of recovery, drawbacks, potential side effects, and cost. This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences of the patient.”in reply to: Treatment after Agranulocytosis #1184412Hello – Have you talked to your doctor about antibody testing (TSI or TRAb) before stopping the meds? If antibody levels are still elevated, the risk of relapse is much higher.
Keep in mind that although side effects usually occur within the first 90 days of starting antithyroid meds, if you go off the meds for a significant period of time and then start back on again, the 90-day period will basically “reset” – so you will have to be extra vigilant for potential side effects after re-starting the meds.
in reply to: Terrified of Graves #1184159Hello – Yes, RAI = Radioactive Iodine. Definitely do your research and understand all the risks before pursuing this option. The “Treatment Options” thread in the announcements section of the forum has a couple of nice links that go through the risks and benefits of antithyroid medications, surgery, and RAI.
If you are feeling well and your levels are close to stable, you might even seek a second opinion before going the RAI route. We have members here who have been happy with this treatment option – but once you make the choice to do RAI or surgery, you don’t get a “do-over”!
Hello and thanks for supporting the GDATF! Yes, Graves’ Disease Foundation Inc. is the correct charity for Amazon Smile. That was the GDATF’s former name, and it has not yet been changed over in Amazon.
in reply to: Why women more than men #1184416Hello – The question of why more women than men tend to get autoimmune diseases is a good one, and unfortunately one that researchers have not been able to fully answer. Hormonal differences are certainly a prime suspect, but much is still not well understood. The guidelines from this forum (which can be viewed in the announcements section at the top of the forum) require that links come only from specific credible sources, but this is a fairly lengthy piece from the National Institutes of Health that might be of interest:
http://www.niaid.nih.gov/topics/autoimmune/documents/adccreport.pdf
in reply to: Treatment after Agranulocytosis #1184408Agranulocytosis is not to be messed around with, so it’s definitely important to check out all possible causes of a low white blood cell count and consider other treatment options for hyperthyroidism if appropriate.
However, the risk of side effects of ATDs increases with the dose. The woman in this case study was taking 15 mg/day, while vwbeatles was taking 2.5 mg a couple of times per week.
The medical guidance suggests 10-20 mg as a starting dose and considers 5-10 mg/day as a maintenance dose. So the woman in the case study was on a fairly hefty dose, considering that she was 11 years into treatment.
in reply to: Treatment after Agranulocytosis #1184406Hello and welcome – Definitely have your doctor rule out other causes before you move on to a definitive treatment option. It could be something as simple as your body fighting off another infection. Agranulocytosis almost always occurs within the first 90 days of treatment, and it would be extremely rare for that to occur on such a small dose of meds.
If you truly do have agranulocytosis (which usually comes with a severe sore throat/fever), the medical guidance does NOT recommend the use of any other anti-thyroid meds such as PTU. You can check out the “Treatment Options” thread in the announcements section of the forum for more info on RAI and surgery.
Definitely keep us posted on what you decide!
in reply to: On ATD two years-plus? #1183777@scanders – If you are very sensitive to changes in meds (which I was), you might talk to your doc about skipping doses a couple of days a week before finally going cold turkey. Also, checking antibody levels (TSI, TRAb) is helpful prior to withdrawing the meds, as high antibody levels increase the risk of a relapse.
Wishing you all the best!
in reply to: Vitamin and mineral supplements? #1184369Hello and welcome! Yes, the Internet is definitely full of bad information when it comes to supplementation. It’s always important to check with your doctor before adding any vitamins/supplements to your regimen; some can be harmful in excessive doses, and others can interfere with other meds that you are taking.
In general, research has linked low Vitamin D levels with autoimmune thyroid disease: http://www.ncbi.nlm.nih.gov/pubmed/21278761. So you are starting to see more endos test Vitamin D levels (it’s a simple blood test), with supplementation recommended if levels are low.
(Note on links: if you click directly on the above link, 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).
For patients dealing with mild thyroid eye disease, there is some evidence that Selenium could be of benefit, although the most well-known study was done in a selenium-deficient area, so more research is needed. Again, check with your doctor first, as Selenuim can have negative side effects at excessive levels (gastrointestinal upset, fatigue, hair loss, and mild nerve damage).
Calcium would be another supplement to ask your doctor about, as some patients experience bone loss during periods of hyperthyroidism. Of course, there are some mixed reviews out there on the benefits of calcium supplementation.
in reply to: My husbands behavior is irrational after TT #1184395Also, for future tests, have your husband check to see if the lab can send the results online. I don’t know about all providers, but with Quest and LabCorp, you can register to have results e-mailed to you directly.
Of course, you still need to consult with a doctor about making dosing changes, but this at least gives you the results right away and lets you “digest” the information before seeing the doctor.
Time is running out to register for our May 7th patient education event in San Diego! I’ve heard 5 out the 6 presenters speak at past events, and they are all fabulous – this is guaranteed to be an informative and engaging day for patients and family members!
in reply to: My husbands behavior is irrational after TT #1184391Hopefully, the fact that you attended the wedding together is progress – keep us posted!
in reply to: Synthroid resistant hyperthyroidism? #1184379Hello – Agree with Liz1967 that a visit with an experienced ophthalmologist would be in order. You didn’t mention the recurrence of eye bulging in your first post; since this is occurring in conjunction with a bout of hyperthyroidism, this should be checked out ASAP!
Also, I’m confused when you are saying the Synthroid isn’t working. If your labs come back showing hyperthyroidism while on Synthroid, that means you are getting *more* T4 than what your body needs on the existing dose. Did you mean the current *dose* isn’t working – from the perspective of keeping your labs in the normal range?
Interestingly, we had a patient meeting in Baltimore earlier this month, and two of the attendees were struggling with severe eye issues many years after treatment. The endocrinologist who was doing the Q&A noted that it’s likely that they both had some thyroid tissue remaining. He said that there *may* be some benefit to a procedure called “Total Thyroid Ablation”, which is thyroidectomy followed by RAI to destroy every last bit of thyroid tissue. (Patients with high-risk thyroid cancer go through this procedure).
He noted that this seems totally counter-intuitive, as RAI is linked with an increased risk of TED, but this is something that will hopefully be researched more thoroughly in the future. Here’s one link:
(Note on links: if you click directly on the following link, 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).
in reply to: Sub Clinical Hyperthyroid? #1184383Hello and welcome – For subclinical hyperthyroidism, doctors will often “watch and wait” to see if T4/T3 start getting out of range (too high) before they start treating. However, for patients who are having symptoms or are at risk for heart issues or osteoporosis, treatment is recommended.
Also, as someone with a past history of Graves’, it’s important to be aware that this could be precursor to a full-blown recurrence. So definitely stay in close contact with your doctor and stay on top of his/her testing recommendations.
in reply to: My husbands behavior is irrational after TT #1184385Hello – We are fellow patients here, but my first thought would definitely be to have your husband get his labs checked ASAP. It’s common for the initial dosage of replacement hormone to need some slight tweaking after surgery, and having thyroid levels out of balance can absolutely cause emotional upset – which could lead to behavior that is out of character.
Hopefully, you have friends/family in common that you can reach out to. The first priorities would be to make sure that he is taking his replacement hormone as directed and that he is following up on any lab tests ordered by his doctor.
The following resources might also be of interest.
(Note on links: if you click directly on the following 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).Video – The Emotional Aspects of Graves’ Disase
https://www.youtube.com/watch?v=CB8_5rbCso8Bulletin – What’s Wrong With Me, I’m Not Myself Anymore
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/ -
AuthorPosts
