[supermom]

#1058792

I was just diagnosed with GD. I do not have my levels…do I just ask for a copy of them?
Also, I picked up my medications (methizmole 10mg 3x a day, as well as propanol (sp?)

I’m struggling with hand tremors, anxiety, lots of irritability, always hot….and other typical symptoms.
I know the side effects are rare, but my anxiety has me overwhelmed and I have not been able to bring myself to take my medications. They are still sitting on the counter in their untouched pill boxes.

I’m not a pill taker including tylenol or multi-vitamins at all…I hate taking medicines. Now I have to take 4 pills a day.

Also, are flu shots something that GD patients can get?

Thanks for any advice to get myself going.

[Bobbi]

#1170022

Hi, supermom, and welcome to our board.

First off, you absolutely MUST treat the hyperthyroidism. Being hyperthyroid is potentially lethal, and even when it isn’t, it drains the body of strength, and weakens it — especially the heart. I empathize with you, because I, too, hate taking pills, but this is a situation in which you absolutely must take medication of some type or other. And, also important, you must take the meds the way the doctor instructs, so that when you get new blood tests done, the results will give your doctor the proper information about HOW the meds are working. If you tinker with the meds on your own, your doctor’s hands will be tied, and you will have a much harder time of getting well again.

After you’ve been on the meds for a while, and you start feeling better (hopefully), you can give yourself some space for trying to decide whether or not you want to stay on these meds, or whether you would prefer to have your thyroid removed (surgery or RAI) and go on replacement hormone. That, too, is a pill, but it is one pill a day and it has no side effect issues if you are on the proper dose of it. (If you look up replacement hormone in a pill reference book you will see side effects listed, but if you look at them closely, you will see that they are either symptoms of hyperthyroid or hypothyroid. The replacement hormone is chemically identical to our body’s own thyroid hormone T4, so the issues surrounding taking it is simply one of dosage.)

Yes, Graves people can get flu shots. I get one every year, and that included the year when I was first diagnosed. But your doctor is the person to tell you whether or not at this moment, this year, it is advisable for you.

[supermom]

#1170023

HI
Thanks for the welcome I appreciate the information. Glad I can get a flu shot. My next question is can I donate blood?

The day I was diagnosed they did blood work here were the levels
TSH 0.007
T4 4.30
T3 351

I"m not sure what these levels truly mean. I’ve done some research and I’ve found that even my T2 can be important for some reason.
I that my body should make T4 and when it needs too it will use one and become T3, but I don’t know why my levels are not good. I have T4 and I have T3??

Thanks!

[Kimberly]

#1170024

Hello – The lab values that you received are only useful when compared to that particular lab’s “normal” range. This range will be expressed as a value something like (0.8 – 1.7) Take a look at where you are as compared to the “normal” range. Are you right in the middle? Or too high or too low? It’s also helpful to pay attention to whether your labs are moving upward or downward since your last test.

T4 is a thyroid hormone containing 4 atoms of iodine. When the body cleaves off one atom of iodine, this produces T3, which is the most potent and active form of thyroid hormone.

On the flu shot, I’m on methimazole, and I’ve been cautioned to not get a “live” vaccine or be around anyone who has had one. However, I believe the flu shot is *not* a “live” vaccine. You might check with your provider, though.

As for giving blood, I recall reading somewhere that Graves’ patients can’t be donors, although this policy might vary between different states, different facilities, etc..

[Bobbi]

#1170025

The flu "shots" are made from a virus that has been killed. But there are some flu vaccination preparations that are sprayed into the nose. These are "live," typically. What they do with this type of vaccination is weaken the virus, making it incapable (supposedly) of causing the disease. But there may be a risk to some individuals with that type of innoculation, or preparation. I believe the shingles vaccination is, currently, of the weakened, not dead, variety. Anyway, when we are on antithyroid meds, like methimazole and PTU or carbamazole, we can have a lowered white blood cell count as a result of the meds. It isn’t typical. But to be on the safe side, live vaccinations have a big caution sign on them when we take these meds.

[gatorgirly]

#1170026

Hi supermom,

For what it’s worth, even when my Graves was under control with ATDs and propranolol, my endocrinologist advised me against the flu shot. I work in health care, so I had to wear a mask during flu season whenever I was working in the hospital… hospital policy.

I had RAI in February 2011, and have since become hypo and now take Synthroid. Even still, he doesn’t want me to get a flu shot. So it’s a mask again this flu season. Fortunately, the mask and obsessive personal hygiene seemed to prevent the flu just as well as the flu shot. Good luck, and take those drugs. You need them!

[supermom]

#1170027

Ok well I didn’t know there is a "lab" range. I will have to figure that out. I know that over the phone the results were higher than they were on the previous blood draw.

Sounds like I need to make a list of things and call the office to get some clarification.
1. flu shots
2. lab ranges (I don’ understand this at all!)
3. donating blood

p.s. I work in a school so I’m around all sorts of germs.

[Bobbi]

#1170028

Just to be on the safe side, gator girly, since you work in health care, I would suggest you get a second opinion about the flu shot. And, I will double check with my docs. Again. But what I’ve been told is that when we are healthy again, on replacement hormone (not ATDs, but replacement hormone) there is no contra-indication for the flu shots. My doctor is even advising me to get the shingles innoculation, which is the attenuated (live)variety. It may come down to a judgment issue: which is safest, the vaccine or the disease? Doctors will vary on judgment issues sometimes. Or there may be another reason in your case, that doesn’t exist in mine. Anyway, it doesn’t hurt to press the discussion a bit further to find out what the reasoning is, and whether it has any universal validity.

[gatorgirly]

#1170029

Hi Bobbi,

Thanks for the suggestion, but since I work in health care, I have received numerous "second opinions" from endocrinologists and other physicians. I don’t actually work directly with patients. I work in marketing for a large health system and occasionally travel to and from different hospitals and physician offices within the system. I did just fine last year without it and am going to follow his instructions again this year. Personally, I’m a supporter of the flu shot. Until my diagnosis, I always got one and never got the flu. However, I’ve been a mess this year with other health issues, both related to Graves and not, and so I’m not going to mess with one more drug in my body unless it’s a matter of life or death (or TED) ” title=”Smile” />

Supermom – I’d be interested in seeing what you find out about blood donation. What state are you in, by the way?

[supermom]

#1170030

HI,
Yes I will post what I find out about blood donation. I’m in the land of Oz! ” title=”Smile” /> Good ole Kansas.

Gatorgirly, I’m curious what health issues you are having related to Graves.

I have to be honest people. I’m freaking OUT! I’m very worried about gaining weight and just saw the poll of people voting that weight loss has become EXTREMELY DIFFICULT after being diagnosed with graves. I do not want to gain weight. (I know it’s better to gain than be unhealthy with Graves) I just don’t feel good about myself when I am at a higher weight. It makes me feel so bad about myself. I think I’m at the perfect weight for me, and it’s making me nervous that I won’t be ME! ” title=”Sad” />

So anyway. I’ve only been taking these pills for a week so I’m sure by Halloween next year I’ll be able to dress up like an oversized pumpkin. ” title=”Smile” />

[sassymom]

#1170031

Hi,
I love how we all have received such varied opinions of things. My endo told me yes, get the flu shot, regardless, but I’m asthmatic (allergy related) and can only get the shot, so…

My TSH has never read above 0 at this point. I was just recently diagnosed, too, in March of this year. I’m on a very low dose of methimazole, and was on atenolol due to my heart rate. I was totally freaked out–I had historically low blood pressure, was rarely sick, and had this crazy sinus infection, and that lead me to the Dr and there I was diagnosed. I had been in for a physcial not three months prior and was fine.

At the time of my diagnosis, I was exercising daily, raising my heart rate, and sitting in a sauna afterwards, raising my blood pressure–my endo said just keep doing it. My body had obviously adjusted well. He was shocked at how well I was handling it, and well, here we sit. I’ve been able to maintain my weight, not lose, but not gain, but being conscious of it all.

I’ve even been one of the few that have the Graves’ eye disease, where my right eyelid has slightly retracted, and I’ve learned to deal. I totally wigged when I saw that, called my endo at like 7am freaking out about it. I was pretty vain when it came to my eyes.

Give the meds some time, do some research, keep talking to people and asking questions, and tell everyone. You’d be surprised at how many people are educated on the subject. You’ll get through it, we all will.

[Bobbi]

#1170032

Hi, Sassymom:

Upper eyelid retraction can be strictly related to thyroid levels — unlike the rest of the symptoms of TED. Many of us see it go away completely when our thyroid levels get controlled back in the normal zone. No guarantees, sadly, but you might see your appearance revert to your pre-Graves look if there is no actual protrusion of any significance going on.

[supermom]

#1170033

Ok the flu shot was not a problem. I even went ahead and got the Tdap too!

I totally forgot about the donating blood(seems to be pretty common theme with me) and I requested my labs but I had to leave a message for that.

So here is a question:
1. My current doctor is the only one is his office, the receptionists are unprofessional and I can NEVER talk to anyone. Anytime I call I have to leave a message. They have an on call line that I’m sure I could get to in an emergency, but other than that all my questions are left via message.
Should I seek out a new place to go? I’ve heard mixed review on him and that some say he doesn’t listen and is totally old school(not up to date on current research) others say that he is totally helpful. I’m so confused and have gone back and forth on the issue. Any advice?

[Bobbi]

#1170034

I think you need to evaluate your doctor on your own criteria, and not listen to the complaints of others. Unless those complaints involve serious malpractice issues. For example, "Old School" may mean that the doctor trusts scientifically proven treatment options to alternative suggestions, in which case the doctor is giving the patient the best treatment available, but the patient isn’t happy about not being able to experiment. It might mean something else, too — I could speculate all day. But the important thing is that you need to try to figure out the doctor on your own. I have an endo I consider fabulous, while others consider her to be a awful. She’s intelligent, pays attention, makes herself available to patients when needed. But she doesn’t have a warm and fuzzy "bedside" manner. I don’t care about the warm and fuzzy. I care about her listening and giving me thoughtful commentary. And while she may not be warm and fuzzy, she makes herself available to her patients, and that counts for a lot.

I understand how the office staff at can leave a horrid impression. Receptionists ARE from time to time frustrating. They are receptionists, not nurses or doctors (at least in my endo’s practice), not "professionals". At times it seems to me that they see their function as "protecting the doctor from those pesky patients." But, it is possible that your doctor has installed very "picky" rules about the way the receptionist behaves, in order to keep said receptionist from giving out bad information (because the person is not medically trained) and unintentionally hurting a patient. My endo has done that in order to (in her words) keep the reception staff from doing something "totally stupid."

So, again, if you can try to evaluate the doctor based on how he interacts with YOU and whether or not he provides you with what seems to be good,thoughtful caring doctoring, you will be better off. And, if you cannot get past the dragons at the gate, to talk with him, or get questions answered, tell HIM about it the next time you see him, and see what type of response you get.

[supermom]

#1170035

Thanks that makes total sense.

My next appointment is coming up but I want to test the waters here.

I’ve been on the medication for about 2 weeks now. The past 2 days I have felt horrible.
My heart has slowed and the hand tremors have dissipated, but that’s about it. I’ve been so irritable and frustrated the past 2 days and the end of the day I’m so overwhelmed I end up in tears. I can’t handle any new problems or ANYTHING and have a frustration breakdown!

Is this just me? Is it the hormones? Is it the medications? Is it (C) all of the above?

[Author]

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