[Val]

#1074778

Hi Sarabear, Hang in there. I don’t know much about the meds you say you are taking but at least your treatment has started. The fatigue is miserable-i slept for a month and did not have the strength to move. and it took a month on meds to get past the extreme fatigue to the moderate fatigue. A year and a half into it and I would describe my fatigue now as mild.
It would be good if you could rest-you sound like you’ve got a giant plateful of obligations. If I were in your town I would come over and watch those kids for you so you could take a nap!! What I am curious about-does anyone know??-does the fatigue ever go away??? I was really happy with my treatment-every step of it seemed tailored to me-even tho my endocrinologist, highly renown in his field, thinks outside the box I am very happy with the results.
Val

[sarabear0508]

#1019883

I am SO tired I can’t stand it. I started meds 2wks ago, it’s propylthiouracil 50mg three times a day. I havn’t seen any changes yet but it must be too early. I have a VERY active three year old. He has a speech delay and is attending special education pre-school where he is getting help. I am a student and a nanny. I watch a 6 month and 14 month old girls. They are from separate families and sometimes I have them at the same time. I always have my son with me also! So my life is extremely hectic. I am 20 yrs old and use to have endless energy! I became hyperthyroid when I gave birth to my second son Landon who passed away after birth. It was the most horrific experience to loose a baby that way. So after his death I became hyperthyroid and didn’t know it. I thought I some how contracted mono. So after countless testing and anguish I was diagnosed with Graves. I am doing well in every area accept FATIGUE. I am to the point of having to quite my job. I can barely get up to change my clothes or take my son to school in the morning. I have to have the money so I have to push myself everyday to stay awake. I get home at the brink of passing out and my body hurts all over. Anyone else have HORRIBLE body aches, My body hurts all over like I’m one big bruise! It’s worse in the morning and at night. I feel like you do when you have the flu and your body hurts. So I guess I am asking for advice on what to do for energy and body aches. I am weening myself from caffeine because then I can’t sleep at night. I feel like a twig about to break. Please help!

[Bobbi]

#1074779

First off, Sara, I am so sorry for the loss of your baby. I, too, lost a baby shortly after her birth. It is hard.

The shorthand form of the drug you are on is PTU (if you don’t want to spell that long name out again). I could never spell it without looking directly at the pill container. ” title=”Wink” />

While the drug does start working right away, it can take some time before we actually feel the results. That is because the drug only interferes with the production of new thyroid hormone. Thyroid cells also store thyroid hormone for future needs. Until the stored supplies are used up, you won’t feel much of a difference on the drug.

Then, there is the possibility that you will need adjustments of the drug dose. Typically we have to wait at least a month before going back for blood tests to determine how well the drug is working.

You are very ill right now, Sara, and might indeed have to make some concessions, temporarily, in order to preserve your strength. Hyperthyroidism is devastating to the body. If you have to keep the job, perhaps your school work could be deferred until the next term? We do have to make adjustments for the period of time when we are very, very sick with this disease. We cannot continue, typically, to do absolutely everything. Something has to give, otherwise, in our weakened state, we can become sick with other problems, making the whole issue that much worse. Do take good care of you.

Another thing to discuss with your doctor, though. Sometimes the drug (PTU) can cause body/joint aches. Did these symptoms start with the drug or shortly thereafter? If a symptom starts while you are taking a drug (any drug), you need to consider whether or not you are having a side effect and discuss it with your doctor. There is another drug that does pretty much the same thing as PTU. And there are other treatment options, often.

None of our treatments, however, works instantly to give us back our energy and health. There is a process involved. First: we have to get back to normal levels of thyroid hormone. This can take some time. Second: we need some months at normal levels of thyroid hormone so that our bodies can heal from the damage done by too much thyroid . It helps, I think, to know that you need to look for progress and not absolutes. If you are seeing progress, seeing that some things are better, that is a good sign. We just need infinite patience during this whole process.

I do hope you are feeling much better, and soon.

[sarabear0508]

#1074780

Thanks Bobbi!
I’m going to look through my schedule and start planning ME time, because if I don’t I’m just hurting myself. I haven’t seen an endocrinologist because my doctor feels she can handle it and the truth is she doesn’t know enough. A asked all these questions and got vague answers. When I looked up the answers to the questions I asked I got all the answers books and the internet. I was reffed to a new pc doc yesterday by a friend who is hypo-thyroid. I just called the office and have an appt on Tuesday! That way this new doctor can give me the referral needed to see an endo. How do you explain to family and friends what your going through? My friends think I’m depressed or lying to them because I don’t want to hang out. Truth is besides being unbelievably busy, I don’t have the energy to take a shower let alone give up a nap to hang out with them. I mean my family knows I’m sick but they get exacerbated when I sleep more than usual or I move as slow as snail. My three year old can run circles around me. He makes so many messes because I can’t chase him. Then because my body hurts all over I don’t get up to clean it! I’m living at home with 7 siblings until I can save enough for a new apartment. So when it gets messy ( even tho my mom is the sweetest) she freaks out and forgets that I’m not being lazy, I’M IN PAIN or TIRED! The other bad thing is I called to talk to the nurse at my pc, because I don’t see the new doc untill tue. I asked the nurse if my PTU could be causing the body aches. THE NURSE DIDN’T KNOW WHAT A PTU WAS! SHE HAD NEVER HEARD OF IT. So …ummm.ya I’m definitely excited about this new doctor. My friend she is up on the very latest in thyroid!

Thanks for your response!

[Bobbi]

#1074781

Pharmacists are a very good resource for you right now. They typically will give you a print-out of the side effects of prescriptions you receive; they can also answer questions that you have about the drugs you are on, and whether or not something might be a side effect. I use my pharmacist a lot.

One of the problems many of us had with this disease is that we do not "look" sick. As a result, our family and friends can be less than supportive. They do not realize just how very sick we are. The closest any of my friends or family came to understanding was my best friend who told me that she thought I was "depressed." I became so angry: "I am not depressed; I am SICK!!" So, I do understand. I would print out comments from the medical resources on the web about the seriousness of the disease to give my husband. He didn’t get it, either. They all got it when I was feeling much, much better (ironically). When I had had the treatment, and gone hypothyroid, I had an allergic reaction to something, and my eyes got swollen to the size of apricots. And the skin turned mauve. I looked like a battered wife! THen, they all "got it." So, I’m glad you found us: we do, indeed, "get it."

Good luck with your new doctor.

[Kimberly]

#1074782

sarabear0508 wrote: How do you explain to family and friends what your going through? My friends think I’m depressed or lying to them because I don’t want to hang out. Truth is besides being unbelievably busy, I don’t have the energy to take a shower let alone give up a nap to hang out with them. I mean my family knows I’m sick but they get exacerbated when I sleep more than usual or I move as slow as snail.

I posted this in a thread a while back — it’s a great story written by a woman who is living with lupus. This might be helpful in getting the discussion going with friends and family.

http://butyoudontlooksick.com/the_spoon_theory/

Best of luck!
Kimberly

[shadowrider]

#1074783

Hi
I’m sorry you are feeling so terrible. My sincere condolences on the loss of your child. I was diagnosed with Graves in June’08. I had unbelievable fatigue, muscle wasting, and aches in my joints. after my diagnosis I began seeing a Dr of Naturopathy to help with lifestyle changes and nutrition. One of her recommendations that really helped in the long run was increasing my intake of protein. Because your metabolism has been on hyper drive-your body is using up nutrients faster than you can supply it with fuel. I was told to consume protein every 2 hours, as a meal or snack. I bought protein powder and mixed it into shakes, and also ate Kashi protein bars, slices of turkey or chicken. Along with that I also committed myself to taking vitamins every day, and not forgetting! By August I had gotten a lot of my strength back, and previously I could not even walk up stairs or lift anything. This despite having no normal bloodtests, and I am still on a very high dose of methimazole (30mgs/day) All of the other posters are very correct in saying this is a whole body issue, and it effects all of your cells.
Do try to give up the coffee, or drink green tea, so at least you are getting some benefit from your beverage. Try to eat throughout the day so you don’t fall into the pattern of being too tired to eat when you get home from work.Think of food as part of your medicine. The disease has depleted your body, and now you have to try to build it back up. Don’t lose hope, there is a light at the end of the tunnel. If you have any friends or family that will offer you help with your son, now is the time to take them up on their offer. Now is also the time to let messes stay where they are as much as possible, and only do what is absolutely necessary. I am 52, and I never was sick before I got Graves. I am hoping I will be able to get well, and see this into remission. All the best to you. Susan

[sarabear0508]

#1074784

Susan,

WOW! That’s awesome! It makes perfect sense! I usually have my day care girls here in my home so it would be very easy to make some snacks for myself. I’m going to try exactly what you said, and see what happens. I didn’t think about timing my meals to have fuel for the day. Considering I can’t gain weight…WHY NOT! I use to be 120lbs. I dropped down to 100lbs when I was first afflicted with Graves. I’m back to 114lbs and look much better! I would like to gain more, but I just can’t. I’ve never found a protein drink that I liked. Most I had to gag down, and then I felt nauseous. Any suggestions? Thanks alot for the advice. Do you think I should get into see a dietitian?

Thanks so much

[shadowrider]

#1074785

HI Sarabear
The health food stores near me sell different kinds and flavors of the protein powder in single serve packets; so you can try a few to see what tastes best to you before you commit to a whole jar. The one I like is made from whey powder-which is derived from milk. It is vanilla flavor, so it can go in chocolate milk, or juice and not taste strange. It is a personal choice.
Or if you have a blender; whiz it up with fruit and make a smoothie- you really can’t taste it at all-I think it is the texture of some of the protein powders that get to people. If you can tolerate milk products., the whey powder is pretty smooth.
It couldn’t hurt to see a dietitian if you don’t think you have a good handle on healthy eating. Maybe getting a book on it to begin with, so you have something to reference from?
Does any one on the board have any suggestions re: a recovery diet?
Susan

[sarabear0508]

#1074786

Thanks Shadowrider!

I stay away from milk because it doesn’t agree with my stomach. But I am going to the health food store this weekend to see what they have. I forgot about that store! I’m sure I will be able to find something I like!

[TaraPetit]

#1074787

Oh I have to agree! I forgot about whey powder. I always used a blender, and it mixes up smooth, not lumpy. And it doesn’t have that strong over-taste that so many powders have. I’m a chocoholic, so I got chocolate. With frozen raspberries whipped in, mmmmmmm!!! ” title=”Smile” />

TP

[sarabear0508]

#1074788

I’m really hungry now! I LOVE chocolate.
Actually I ‘m eating Dove chocolate now!!!

And nothing goes better with chocolate than raspberries!

[TaraPetit]

#1074789

sarabear0508 wrote:I’m really hungry now! I LOVE chocolate.
Actually I ‘m eating Dove chocolate now!!!

And nothing goes better with chocolate than raspberries!

Amen sister!!! ” title=”Very Happy” />

TP

[sarabear0508]

#1074790

Tara,

I’m eating raspberries and thinking of you! The raspberries are much better in the summer though! Just wanted to say hello….and see how your doing.

Hugs….

[TaraPetit]

#1074791

Thanks SaraBear for asking about me! Enjoy those raspberries!!! I am hypo at the moment, and drug free for the next two weeks to see where it actually goes. I’m feeling a lot better without the tapazole, but am getting symptoms of the hypo – anxiety about the most ridiculous things. The other day, my dh came home from work and asked me how I was? I wasn’t feeling good, felt like I was coming down with a cold. Jokingly, and I knew he was joking, he asked me "What did you go and get a cold for?"

And I burst out crying, torrentially, and apologisng profusely, for getting sick. And as I’m doing this, part of me is asking myself "OMG! Is this really me apologising for getting sick, and crying like a soap opera queen?"

How embarassing!! My dh is trying to sooth me, and luckily only a few days ago the Dr had qued us in on the symptoms of being hypo, so it didn’t floor him like it could have. If sure as heck floored me though!!

How are you?

Love,

TP

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