[Kimberly]

in reply to: (Update) CDC Webinar on COVID-19 and Autoimmunity #1185708

UPDATE: Although we did not get our Graves’-specific questions answered, the audio & slides from this webinar will be posted at AARDA.org. The organizers received over 1,500 questions – and they are working on getting answers to ALL of them!

The presenters noted a specific study that looked at co-occuring (“co-morbid”) conditions and COVID-19, so we are going to look that study up and dig into the data. In general, it seems that what we’ve been told before is still holding up – that autoimmune patients *in general* are not a high-risk group, but those who are immunocompromised because of specific treatments (such as higher doses of Prednisone) *do* have a higher risk. For those who *are* immunocompromised, the statistics were stark. According to one study, 40% of immunocompromised patients were hospitalized (24% non-ICU and 16% ICU).
There was also a helpful number & text option provided for people who are feeling overwhelmed: call 1-800-985-5990 (TTY 1-800-846-8517) or text TalkWithUs to 66746.

We’ll keep everyone posted as the answers to the questions get posted!

[Kimberly]

in reply to: Synthroid to generic -what to expect? #1185668

Great news! That is crazy that a 90-day supply of Synthroid was that expensive. Wonder if it’s one of those situations where going through insurance was actually costing *more* than the cash price!

[Kimberly]

in reply to: Day 3 Newly diagnosed checking in #1185694

Hello and welcome – make sure that you are looking at the “normal” or “reference” ranges for each lab test. (That’s just for your own info – we’re fellow patients and not allowed to interpret labs, so you don’t need to post them here. )

The good news is that the majority of patients do *not* have severe eye involvement, but it is *very* common to have issues like dryness, light sensitivity, and swelling. The #1 thing you can do on your own to prevent progression of TED is to not smoke (and avoid second-hand smoke). Also, if your doctor eventually recommends RAI, make sure you know the risks of worsening TED after RAI. (Smoking status and very high thyroid/antibody levels are risk factors for worsening.)

Hopefully, you have a followup appointment with labs in the coming weeks to see if your dose needs adjusting. In the meantime, rest when you need to and don’t be afraid to defer/dump/delegate tasks that are causing stress!

[Kimberly]

in reply to: Opinions #1185653

Hello – We are fellow patients and can’t interpret labs or give medical advice, *but* I would follow up with your doctor and ask if your country has specific medical guidelines on the treatment of hyperthyroidism. In the USA, doctors are advised to base dosing off of Free T4 and T3 and *not* TSH, which can take some time to rebound. Once T3/T4 are in range, the dose is often reduced, with followup testing to see if further adjustments are needed. (Note: you should *not* adjust the dose on your own without consulting with a doctor.)

Hopefully, you are getting hard copies of your labs. If you note that your T3/T4 have fallen from being too high to being at the bottom of the “reference” range in a short time, that could definitely explain your fatigue.

As for psychological issues, that is more challenging to sort out. Many patients do find relief once labs are normal and stable – “stable” meaning that your numbers are consistent from test to test and *not* rising or falling. In other cases, there is a separate underlying condition like depression or anxiety disorder that requires separate treatment. Your first step will be to get your levels both normal *and* stable. If this endocrinologist isn’t taking your concerns seriously, do you have a primary care doc who could do a second review of your results and your current dosing?

[Kimberly]

in reply to: Methimazole side effect – terrible joint pain #1185677

@jstewart084 – Hello and welcome! This is a challenging issue. Getting levels checked would be a good start. If your labs look good, but you are still feeling fatigue at specific times of day, this short piece from Northwestern Medicine might be of interest:

https://www.nm.org/healthbeat/healthy-tips/quick-dose-why-do-i-feel-tired-mid-afternoon

If you are still struggling, a visit with our primary care doc might be helpful to rule out any other issues (sleep apnea, side effects from other meds, etc.).

[Kimberly]

in reply to: Looking for information to understand loved one #1185696

Hello and welcome – each patient is individual, but this piece from the American Thyroid Association might be of interest:

https://www.thyroid.org/patient-thyroid-information/ct-for-patients/april-2019/vol-12-issue-4-p-5-6/

This is a public form where anyone can read the posts (although you must be a member to post or reply). You might get more responses in our closed Facebook group (find us on FB at @GDATF and then select “Join Group” in the top right-hand corner of the page) or on our social wall at oneGRAVESvoice.com.

Wishing you all the best!

[Kimberly]

in reply to: All of a sudden I’m hypothyroid #1185703

Please call your doctor’s office and explain how this is affecting your quality of life. Ask if he/she would be willing to work with you on a dose change with followup tests. You obviously don’t want to spend the next two months feeling miserable.

Twenty years ago, there was an idea that patients could get a “goldilocks” dose of RAI that would destroy just enough tissue to leave them euthyroid. These days, patients get a “fully ablative dose”. So it’s possible you were left with a certain amount of functioning tissue after RAI, and things have since changed.

[Kimberly]

in reply to: Feelings and emotions with Graves Disease #1185687

Hello and welcome – Hopefully, you will get some additional responses, but Graves’ can *definitely* put a strain on family relationships. You can also contact us at info@gdatf.org or 877-643-3123 for additional info.

[Kimberly]

in reply to: Methimazole side effect – terrible joint pain #1185675

Hello – We see this approach more commonly used for kids, but yes, you can take a fixed amount of methimazole and then tweak a small additional dose of thyroid hormone replacement until you get to a point where your levels are stable.

A full block and replace regimen – where you take massive doses of antithyroid medications to completely shut down the thyroid and then a full dose of replacement hormone – is not typically used in the USA.

As for work, we do hear complaints from patients who struggle with issues like fatigue and computer work. This link from the Job Accommodation Network might be of interest: https://askjan.org/disabilities/Graves-Disease.cfm

[Kimberly]

in reply to: FDA Approves Tepezza (teprotumumab-trbw) #1185685

FAQ with additional information:

https://www.horizontherapeutics.com/PDFs/TEPEZZA-Frequently-Asked-Questions.pdf

[Kimberly]

in reply to: On ATD two years-plus? #1183802

Thanks for checking in! You hear a couple of different definitions of remission. One involves going 12 months with normal thyroid levels and no meds. Other docs will use the term “remission” to refer to the point where antibodies are no longer measurable.

[Kimberly]

in reply to: Hello and thank you #1172980

Wonderful news – thanks for the update!

[Kimberly]

in reply to: Thyroid problems causing “insect bites”? #1185682

Wow, that is frustrating! Hopefully, others here will chime in. I’ve heard of hives with hyperthyroidism or with antithyroid meds, but your situation is obviously different.

One thought is that I’ve heard a few anecdotal stories of patients reacting to fillers/binders or dyes in their thyroid hormone medication. It would be worth reaching out to your doctor. For people who have this issue, there is usually one dose that has no dyes, and you can adjust the number of pills accordingly. There is also a levothyroxine product called Tirosint that is a gel capsule (and also available as a liquid).

[Kimberly]

in reply to: Diet #1185679

Hello and welcome – if you have a definite diagnosis of Graves’, hopefully, your doctor has tested your antibodies (TSI or TRAb). If antibodies are still raging when antithyroid meds are withdrawn, there is a risk of recurrence. Some patients do go into an extended period of remission, although this is more likely if the antibodies are no longer present.

There are also other potential causes for hyperthyroidism. For example, in Hashimoto’s thyroiditis, patients sometimes go through a period where thyroid hormone levels are too high – and then eventually shift hypOthyroid.

Either way, hopefully, your doctor has a followup scheduled to make sure that your levels are still good. And if you notice a change in your symptoms before your appointment, definitely call your doctor’s office and get in sooner.

[Kimberly]

in reply to: Methimazole side effect – terrible joint pain #1185670

Hello and welcome – hopefully, others will chime in here with their experiences, but joint pain and swelling can be potential side effects of methimazole. That’s good that you have your doctor in the loop and are ruling out potential other causes. Hopefully, you will also have a followup discussion about going back on the methimazole or pursuing other treatment options (RAI, surgery) to make sure that your thyroid levels stay under control.

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