[Kimberly]

in reply to: Need Advice #1066056

Hello – Hopefully, someone who has been in your situation can chime in, but I would start by speaking to a school administrator. The Individuals With Disabilities Act of 1997 and Section 504 of the Rehabilitation act of 1973 can provide some relief for Graves’ patients by allowing accommodations through an individually designed plan. Perhaps something can be worked out where the instructor can assign you a solo project with an extended deadline.

Your body really needs to heal right now — and getting an adequate amount of sleep each night will go a long way towards helping you recover your health and your energy. Hopefully, you will find a compromise that will allow you to finish the program and *also* take care of yourself.

[Kimberly]

in reply to: newby and questions about methimazole #1066073

kathyz wrote: can you tell me: what will happen when i start taking methimazole? might i become excessively hypo? is it possible that i’ll be inflicted with mood swings and depression? what about diet? is there something i should avoid? if the methimazole blocks thyroid production, where will my thyroxine come from? once i start taking the meds, will i have to play with the levels? kathy

Hi Kathy – I have been taking methimazole for 2 1/2 years. The trick with the meds is to find the "sweet spot" where your dose of meds is blocking just enough production to keep you out of hypER territory, but not so much that it sends you hypO. As Bobbi said, this does require a period of trial and error. Some people respond FAST to the meds, and others take longer to respond. You can help yourself by watching for hypO symptoms once you start taking the meds. Common hypO symptoms are fatigue, intolerance to cold, constipation, heavy menstrual periods, slow pulse, dry skin, and joint pain. If you start feeling these symptoms in between scheduled appointments, don’t be afraid to call your doc’s office and ask for an earlier appointment and a new set of labs.

You will read various stories online from people who claimed to cure their Graves’ with a "natural" approach. But some cases of Graves’ Disease will go into remission on their own…so there is no way to tell if these natural approaches "worked" — or whether that person would have gone into remission anyway. Still, anything that you can do to nurture your body, mind, and spirit will help you on the path to healing.

Best of luck!

[Kimberly]

in reply to: Two Different Eyes #1070926

bwrigley23 wrote:My doctor is thinking I will most likely need surgery in about 6 months to a year. But I am wondering if Prednisone would help in the meantime.

Hello – Prednisone doesn’t "cure" the eye disease, but is a *temporary* fix that can provide relief for some patients. You will want to discuss the pros and cons of prednisone with your doctor, due to the potential side effects of steroid use.

[Kimberly]

in reply to: Two Different Eyes #1070925

frefluterb wrote:Hello,
"I hate the wait and see" but cannot do the steroids… but ‘just for today’ I will wait and see

Yes, unless one’s vision is directly threatened, "wait and see" is the usual approach. Sorry you are dealing with this, but one day you will be looking back at this experience from your rear-view mirror! Sounds like you have a good regimen in place to protect your eyes. Other measures that can provide some relief include frequent use of artificial tears (and ointment at night), elevating the head of your bed to alleviate swelling, and using a mask or taping the lids shut at night if they are not closing completely. Best of luck!

[Kimberly]

in reply to: TSH levels always *out* #1066085

Hello – First of all, do you have a friend or family member who can help you out around the house and give you a bit of relief? Easy for me to say, since I don’t have kids! ” title=”Very Happy” /> But you definitely don’t want to miss any more doctor’s appointments, as getting your levels stabilized is the key to getting your health and your energy back!

Mamabear had some great suggestions on staying healthy.

In terms of alternatives to your current meds, hopefully someone who has been through hypO can jump in here. I know of some patients who have added T3 (the most active and potent form of thyroid hormone) to their regimen. However, from hearing stories of these patients, the results tend to be mixed — some feel fabulous…but some actually feel *worse*.

One thing that might help your doc to help *you* is to keep a symptom diary. For example, how many hours you slept and if you still needed a nap later in the day, if you are experiencing hand tremors, issues with constipation, weight/appetite, resting pulse rate. This specific information will be more helpful to your doctor in pinpointing any issues than just saying, "I’m tired."

Best of luck!

[Kimberly]

in reply to: New to Graves disease and Methimazole and confused! #1066096

Beths49 – Can you call the endo’s office and ask for an appointment with a Nurse or Physician’s Assistant? It sounds like you could benefit from a sit-down discussion with someone who is familiar with your medical history…*and* who is willing to take the time to answer your questions. It might even help to have a friend or family member sit in on the visit to help take notes. Sometimes hyperthyroidism can mess with our ability to concentrate! ” title=”Wink” /> Having a list of questions written out ahead of time would be helpful, but here are a few you might want to start with. Hope this helps!

1. Clarification on the interaction between your methimazole and bp meds. (Note: I’m not familiar with an interaction warning between bp meds and methimazole…although being hyperthyroid can lead to an elevated blood pressure).

2. Confirmation that the dose should be taken all at once. (Most of the patients I know tend to split up the dosing, unless it’s a *very* small dose…but your doctor may have a reason for his instructions.)

3. Clarification on what "fine" means as related to your labs. Does this mean your thyroid levels are back in the "normal" range?

4. Clarification on why your dosage is being increased. Is it because your labs aren’t moving in the right direction? Or perhaps because your doc started you off with a smaller dose than needed, to make sure you didn’t have an allergic reaction?

5. Find out when they are going to re-check your White Blood Cell Count — hopefully, soon to make sure your WBC count doesn’t dip any lower. Also, definitely report signs of infection, such as a sore throat or fever to your doctor ASAP.

[Kimberly]

in reply to: Side Effects From my antithyroid medication #1066119

Beths49 – There’s certainly no harm in getting your General Practitioner’s input. Some GPs are comfortable with helping Graves’ patients adjust dosages on anti-thyroid drugs or replacement hormone, but others are not. It’s at least worth asking, since you were unhappy with the results of your last doctor’s visit.

As Ski said, this is a long process, and you can expect to have visits with your doctor every few weeks until your levels stabilize. So you definitely want someone who communicates clearly, and who makes you feel comfortable when you ask questions.

I find that it’s helpful to get labs done a week or two *before* my doctor’s visit. Then we can spend the visit discussing the results…instead of me having to wait for a call after the fact with dosing instructions.

Best of luck…keep us posted on how it goes today!

[Kimberly]

in reply to: Graves disease in the funnies #1066130

Thanks for your post — you are teaching your kids such a valuable life lesson! I know that Jake has lots of "funnies" — I will have to try and think of some. ” title=”Very Happy” />

[Kimberly]

in reply to: update on Ava and Ella who were born with Neonatal Graves #1066135

Valarie – Thanks so much for the good news. {{{Hugs}}} to you and your family…hopefully, we will get more positive reports as Ava and Ella develop into lovely young ladies!

[Kimberly]

in reply to: Neonatal Graves Disease #1071105

jmarvin – I don’t have children, but I have heard of cases where kids “outgrew” early allergies. However, I wouldn’t introduce a suspect food back into your baby’s diet without proper medical supervision.

PTU can occasionally cause hives as a side effect, but since the problem cleared up when you eliminated soy and peanut butter, hopefully the food was the culprit.

I don’t know that scientists fully understand the link between food allergies and autoimmunity. We *do* know that in both cases, the immune system misfires and launches an all-out attack when it shouldn’t. The attack is either against a harmless substance (food allergies) or our own healthy tissue (autoimmune disease).

Not all docs agree, though, over whether “sensitivities” or “delayed” allergies really have a part to play in developing or healing autoimmune conditions. I’ve done some “sensitivity” testing myself, and my conclusion is that if cutting out certain foods makes you (and your baby!) *feel* better — and is making your labs move in the right direction, then go for it. My only caution would be to talk to a doctor about finding a way to replace any nutrients that you might be missing out on.

[Kimberly]

in reply to: Normal or hypo with these labs? #1066138

Hi Elise – I’ve been on the methimazole see-saw for about 2 1/2 years now. When I was first diagnosed, my endo’s office only wanted to order TSH tests…I had to fight to get them to order Free T3 and Free T4 tests. Now, they routinely test my Free T3 and Free T4, as research is showing that TSH can remain supressed for an extended period of time in some Graves’ patients. For these patients (and I’m one of them), the "Frees" are better indicators for determining dosage adjustments.

No one on this board is qualified to make dosing recommendations, as we are not doctors…and we don’t know your entire medical history. However, I would encourage you to speak up and ask your doctor about dosing questions during your office visit. For example, "My Free T4 has decreased from X to Y in Z number of weeks. Are you sure this reduction in dose is enough to keep me out of hypO territory?" Then you can get a dialogue started with someone who *is* qualified to make dosing decisions.

If you still have concerns about your doctor’s dosing recommendations, I would encourage you to keep a close eye out for symptoms of hypO and tell the doc’s office that you want a new set of labs ASAP if these symptoms start to appear. (Symptoms of hypO can vary by individual, but common ones include fatigue, cold intolerance, slow pulse, constipation, dry skin, weight gain, and heavy menstrual periods). If you truly don’t feel well, don’t feel like you are stuck waiting until your scheduled appointment to get a new set of labs. The squeaky wheel gets the grease!

Best of luck!

[Kimberly]

in reply to: How do people cope with the nasty comments and laughter ? #1066153

JBartlett – Bobbi is correct that your hyperthyroidism needs to be treated, no matter the cause. You might ask your doctor, though, about the cost vs. benefits of getting a TRab or TSI antibody test to confirm the presence of Graves’ Disease. Autoimmune conditions tend to cluster in families, so if your hyperthyroidism *is* due to an autoimmune issue, this is good information for you and your family members to know. *If* one of your family members were to develop Graves’ or another autoimmune condition, this might help them get a quicker diagnosis. In fact, the American Autoimmune Related Diseases Association (AARDA) had a campaign a while back to encourage people to "know their AQ" — or Autoimmune Quotient. They are working to make it standard practice to have docs check for a history of autoimmunity in the family, just like they ask about family history of stroke, cancer, heart disease, etc..

You didn’t mention what drug you are taking, but I assume that it is PTU, methimazole, or tapazole. Liver complications are potentially VERY serious, but fortunately, this is a rare side effect of anti-thyroid drugs. The good news is that getting a regular Complete Metabolic Panel (CMP) as part of your regular blood tests can help monitor liver function. When a liver issue is identified, most patients see an improvement once the meds are reduced or discontinued. One of the presenters at our conference last fall mentioned that the most serious side effects tend to occur during the first 90 days of treatment. So definitely check with your doctor on any symptoms to watch for, and contact their office ASAP if you experience any of those issues. Another potential side effect of anti-thyroid drugs is a severe reduction in White Blood Cell count. This can be monitored with a regular WBC test — and you should call your doctor’s office ASAP if you experience a severe sore throat with fever, as this can be a sign that this condition is occurring.

As Bobbi said, once you have selected a treatment option, you will eventually be able to get back to enjoying your life!

[Kimberly]

in reply to: How do people cope with the nasty comments and laughter ? #1066146

First of all, you should know that you are not alone. At the last two GDF conferences I have attended, we had a speaker who was a psychiatrist and also had Graves’ himself. He shared some research that had been done on patients with Thyroid Eye Disease, which confirms that many TED patients experience depression, anger, tension, fatigue, confusion, and a perceived lower quality of life. Although there is no one-size-fits-all approach to dealing with these issues, following are some of his general suggestions…one or more of these will hopefully provide you with some relief.

* Maintaining a good diet
* Exercising
* Strengthening social supports and relationships (including seeking group support)
* Using stress reduction techniquest such as yoga, meditation, or Tai Chi
* Counselling or psychotherapy

Also, have you seen an ophthalmologist? If so, did he/she recommend proceeding with the OD? It sounds like you are really having serious concerns about this procedure. There are many members on this board who have been through the procedure and can answer any questions. Nearly all of the patients I’ve come in contact with have been pleased with the results of their OD. However, all surgeries carry the potential for complications…so I would make certain that you are doing this for yourself.

Finally, sometimes when we *think* that people’s actions are directed at us, that isn’t always the case. I’ve had people misinterpret my actions and think I was angry with them when that was absolutely not the case. Yes, there are some rude and ignorant people in the world…but we can’t let those folks dictate how we live our lives.

[Kimberly]

in reply to: Scared, frustrated could use help #1066545

Hello – I’m sorry you are still struggling with this. Is there any way to contact your state’s Health Department to check on options for residents without insurance? Even if your daughter isn’t Medicaid eligible, the state could potentially have some other resources and suggestions, such as local medical schools.

If your daughter does have a pituitary issue, she will feel SO much better once the issue is formally diagnosed and treated…and her thyroid levels are stabilized. Perhaps your other daughter can run interference and encourage her to seek treatment, since they are so close.

Best of luck…please do keep us posted.

[Kimberly]

in reply to: ER visit #1066164

Hello – Yes, heavy menstrual periods can be a symptom of being hypOthyroid. But I would encourage anyone who is experiencing this to get it checked out (like you did) in order to rule out any other underlying conditions that might be causing the bleeding.

That’s great to hear that you are getting some energy back!

[Author]

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