[Kimberly]

in reply to: Help with Lab Results #1184362

Hello – We are fellow patient here, not docs, so we are not allowed to interpret labs, but here are a few thoughts…

1. The lab values are only helpful in the context of your own lab’s “normal” range. Some patients do find that they feel better in a particular spot in the range – for example, in the middle, or in the upper end.

2. Starting fresh with a second opinion might help you get to the bottom of the fatigue. In particular, the heart issues would be worth checking out, as you mentioned you had a pacemaker recently installed. We also met an endocrinologist last year who said that she often finds new cases of sleep apnea when patients are feeling fatigued but thyroid levels are normal.

3. You might ask your doctor about trying a brand name instead of generic (Synthroid, Tirosint, etc.) or possibly about trying T3/T4 combination therapy. We hear mixed reviews of this from Graves’ patients, as some believe that it brought back their old hyper symptoms).

You deserve to get your quality of life back, so please continue to be persistent until you can find a doctor who will help you put the puzzle pieces together.

[Kimberly]

in reply to: Time is Running Out to Register – May 7th Mini-Conference at Shiley Eye Institute in San Diego! #1184275

We now have the final list of presenters!

David B. Granet, MD (Ophthalmology)
Don O. Kikkawa, MD (Ophthalmology)
Bobby S. Korn, MD, PhD (Ophthalmology)
Kevin Brummund, MD (Thyroid Surgery)
Karen McCowen, MD (Endocrinology)
Farshad Moradi, MD (Nuclear Medicine)

[Kimberly]

in reply to: Orbital Radiation – Expectations #1184327

Hello – I’m not aware of anything new that has become part of the standard of care, although there are a number of clinical trials going on. If you visit clinicaltrials.gov and search for “thyroid eye disease”, you can find a number of studies that are in process or recruiting.

[Kimberly]

in reply to: what do I do? #1184338

Thanks for checking back – kudos to your doctor for making sure you were in a place with the expertise to get you stabilized and treated!

Methimazole and propranolol are common for Graves’ patients, although I am not familiar with the third item. Could be a weird autocorrect issue!

[Kimberly]

in reply to: Proptosis recurrence 3 years after OD #1184349

Wow, thanks so much for sharing this important story! Wishing you all the best with this next surgery.

Reactivation of TED is indeed rare, and when it does occur is often a result of stress or exposure to smoke. I am SO glad to hear that your doctors went the extra mile to get you a correct diagnosis!

[Kimberly]

in reply to: 3 years post RAI still feel like I’m losing my mind!!!! #1184343

Hello and welcome – hopefully, those who have had RAI will chime in, but here are a couple of thoughts…

1. TSH alone is fine for patients who are stable and feeling well, but if you are still experiencing symptoms, it certainly makes sense to see where Free T4 and T3 are. If you think you might need a second opinion, the “Looking for a Doctor” thread in the announcements section of the forum includes links to several good search sites where you can locate a doc near you.

2. We hear mixed reviews from Graves’ patients on T3/T4 combination therapy, which includes products like Armour and Cytomel. Some do feel that it improves symptoms, while others believe that it brought back a return of their old hypER symptoms. Patients who do choose Armour usually take that product alone, and not in combination with levothyroxine.

The European Thyroid Association came up with some guidelines on when to pursue combination therapy. They recommend T4-only therapy for at least six months and then ruling out any other conditions (sleep disorder, other autoimmune issues, etc.) that could be causing the symptoms, as well as ensuring that the patient is compliant with dosing guidelines (which it sounds like you already are). If the patient is still experiencing symptoms after that time, they recommend a short trial of synthetic T3 (they do *not* recommend Armour or other dessicated products), with a follow up evaluation to see if symptoms improve.

[Kimberly]

in reply to: Appetite problems. #1184342

Hello – Hopefully, others who have had RAI will chime in here, but definitely report this symptom to your doctor to rule out any other possible causes. Interestingly, the National Institutes of Health lists hypothyroidism as a possible cause of reduced appetite – so it might be worth getting your levels checked if it’s been a while.

[Kimberly]

in reply to: Time is Running Out to Register – May 7th Mini-Conference at Shiley Eye Institute in San Diego! #1184274

Registration is now open! Here’s the 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).

https://www.eventbrite.com/e/graves-disease-thyroid-eye-disease-patientfamily-mini-conference-tickets-22803501888

[Kimberly]

in reply to: what do I do? #1184335

Hello – We are fellow patients here, not docs, but I would suggest getting this checked out sooner rather than later. There is no telling how long the Medicaid could take to go through!

You could try the ER, or you could look up a heath center near your zip code on the hrsa.gov site – they serve everyone regardless of insurance, and payment is free or on a sliding scale basis:

(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).

http://findahealthcenter.hrsa.gov/index.html

Symptoms for Graves’ can overlap a lot of other issues, but a simple blood test can tell you if you have hyperthyroidism. The TSH test is an inexpensive screening test, and the labs can be set up to automatically test T4 and T3 if TSH is out of range.

Hope you can get some answers!

[Kimberly]

in reply to: Time is Running Out to Register – May 7th Mini-Conference at Shiley Eye Institute in San Diego! #1184272

Hi all – after much research, we decided that the best hotel option was the Del Mar Inn:

720 Camino Del Mar
Del Mar, CA 92014

(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).

http://www.delmarinn.com/

The Del Mar Inn is several miles from Shiley, but if there is enough interest, the hotel will provide a shuttle at 8:30 a.m. and 5:30 p.m.. This hotel is two blocks away from the beach (😎 ) and was much less expensive than the options that were closer.

Conference participants will receive a special rate of $99.99/night for a Garden View/Queen and $119.99 for an Ocean View/Queen for May 6th and May 7th. To reserve, call 858-755-9765 and ask for the Graves’ Disease & Thyroid Foundation Rate. This rate will be available until April 13th or until the room block is sold out. Cancellations made less than 3 days before arrival will be subject to one night’s room charge.

Registration for the event will be $10 and will include a light breakfast and a boxed lunch. The registration link will be coming soon!

[Kimberly]

in reply to: 3 year old with graves #1177610

Hello – Sorry to hear that your daughter has relapsed. The risk of side effects is highest during the first 90 days of starting *or* re-starting the meds. So you will definitely want to keep an eye out for signs that might indicate issues with the liver (fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, yellowing of the skin or eyes) or white blood cells (sore throat with fever, mouth ulcers).

I’m really not familiar with full block & replace being used in children, where the physician prescribes large doses of Anti-Thyroid Drugs to shut down thyroid production completely, plus replacement hormone to normalize thyroid hormone levels. The risk with B&R is that you are using much higher doses of the anti-thyroid meds, which increases the risk of side effects.

What is more common in children is prescribing a consistent dose of anti-thyroid meds, and then adding some replacement hormone as needed to prevent hypothyroidism.

A second opinion might also be helpful as you make this difficult decision for your daughter.

If you haven’t already, definitely check out the videos on the GDATF’s YouTube channel on Graves’ and children:

(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).

GDATF Videos – Check out the ones from Dr. Michael Gottschalk and Dr. Scott Rivkees:

https://www.youtube.com/user/GravesAndThyroid/videos

GDATF Playlists – Videos from seminar on Graves’ & kids co-hosted by Children’s Hospital of Philadelphia:

[Kimberly]

in reply to: Teen son with Hashimoto’s and missing school #1184300

Hello – Hopefully, someone who has been in a similar situation will see this and respond. In the meantime, this bulletin was written about Graves’, but might still be of interest:

(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).

http://gdatf.org/about/about-graves-disease/patient-education/students-graves/

Hopefully, if you continue to be the “squeaky wheel”, you can get an administrator to take an interest in your son’s case. He is obviously someone very bright who has had a lot of back luck in terms of health.

Some primary care docs are very comfortable treating Hashi’s, but others are not. If your son’s levels have been fluctuating, it would certainly be worth trying to get an evaluation from an endocrinologist.

Wishing you and your son all the best.

[Kimberly]

in reply to: Orbital Radiation – Expectations #1184323

Hello – I have not had this done, but here are a couple of good resources that will hopefully be helpful:

(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).

Presentation from GDATF 2011 Conference:
https://www.youtube.com/watch?v=jy5y6gb2AHk

Info from the International Thyroid Eye Disease Society:

Radiotherapy

[Kimberly]

in reply to: Methimazole More Effective than Radioiodine for Opthalmopathy #1184308

This research out of Kellogg Eye Center also found that patients undergoing thyroidectomy had the best outcomes with the eye disease. (The finding regarding statins was a surprise and something that needs further study).

(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).

http://www.kellogg.umich.edu/news/14/thyroid-eye-disease.html

Of course, any surgery comes with risks, so this should be one of many factors considered when making a treatment decision.

[Kimberly]

in reply to: 10+ pound “weight gain” since January 11??? #1184297

@Shirley – Thanks for your post…sometimes, we can miss the most *obvious* of possibilities!

@letsgomets – I’ve never heard of oatmeal being a problem, but it should be easy enough to test by cutting it out for a couple of weeks.

[Author]

Posts