[connypie]

#1060372

Hi Ive been living with Graves diagnosed for almost 20 Years and have been suffering especially with knee pain(wobbly,swollen,limping ect)and now shoulder pain.and now the wrists are so weak,i cant wash a frying pan without my wrist giving out.Is this part of Graves?I dont have an Endo right now,the last one didnt even shake my hand and sat 10 feet away behind her desk and told me my labs were fine and to basically not be such a sensitive suzy, that was a few years ago.i just had to have my levo adjusted.I felt terrible,i was loosing cognitive function,i couldnt even understand a basic form letter.my primary sent me for a head ct scan,i was so bad.when my labs came back they told me something was high(dont remember what),all i know it was 12.8.so he reduced my levo.im feeling better,i just never put it together with the graves,because i used to get really bad anxiety and panic attacks and my heart would just feel like jumping out of my chest when i got hyper.oh i had radiation 19 years ago and also have the eye thing.so does anybody know anything?

[snelsen]

#1182263

Hi Connie, I suggest take this step by step.

1. Ask your primary-or find a new endo, and tell them you have Graves’,the amount of time you have had it, and that you have not had regular labs over the years, and that you have the symptoms you described. Say that you feel so crappy, that you know something is wrong, would they do some labs, including a thyroid panel, and give you a general exam.

YOu also NEED to understand reports, and you must learn to have a basic understanding of your labs. It’s not hard. Generally, at the end of any written report, lil your CT scan, there will be a summary and impression. That is where you can get a quick idea of if it were normal (i imagine it was, or you have been referred to a neurologist, if they saw something concerning with the head CT.)

Lots of learning for you to do. Plus finding a doctor who will look at you as a total person. And part of that is YOU giving a good and complete history to them.
Part of learning labs, is looking at the normal range on the lab report. Most reports have them. THIS IS A FOR INSTANCE, ONLY, you do need to get info from your doctor. But you need to know that many people have a general understanding of labs.
For instance:
1. If there is a super low number for hemoglobin and hematocrit, a person could be anemic, and/or the reason should be explored.
2. If the number for WBC is high, white blood cells (fighting infection is ONE reason it could be high, the normal is generally 5000-10000, there are many reasons for this. Some easily explained, some not.
3. I think you have the impression that the number you mentioned, 12.8, means HYPER, BUT IN FACT, IF IT IS TSH, the higher the number the more HYPO you are.

2. First, if you have not had a DEXA scan, I suggest you get one. Ask your primary care doc, or any of your docs. It is possible that you have a degree of osteopenia or osteoarthritis. This is what it is:

The Dexa scan measures the bone-mineral density in the patient’s body. Multiple X-rays will be taken of your body to measure the amount of calcium and bone minerals in the makeup of your bones. The test will focus on areas of the body that are at risk for fractures, including the spine and hips. You will lie down on a soft surface while a mechanical device swings over parts of your body to provide bone-density images.

Read more: http://www.ehow.com/about_5042767_dexa-scan-show.html#ixzz2v6eptmqA

4. Also, a simple X-ray of your knees, wrists and shoulders will tell if you have a lot of arthritis which causes this pain. (I do.)

We are not doctors, as you know, but fellow patients, and my suggestions are from my own experience and what i have learned for my docs over the years.

**one further comment. We have Graves’ for the rest of our lives. The need for levothyroxine does NOT stay the same. You should have a good endo in your life, have at least a yearly appointment and labs, and/or call with changes in how you feel, so they can order labs to see if Graves’ might be the issue.

Most of the things I’ve said here come under the phrase “differential diagnosis” considering possibilities,t hen ruling the in our out, based on your symptoms.

Hope this helps a bit, I am so sorry you feel so terrible right now.,
Shirley

[connypie]

#1182264

Thanks for your answer snelsen.i had breast cancer 4 years ago.but the pain is longer then that.orthopedist said very little arthritis,all soft tissue and muscle involvement.shoots me up with cortizone and tells me to do physical therapy.the problem is as soon as i feel better and lay off the excercise,the pain comes back.and the weakness.i had a dexoscan 4 years ago,it was fine.went to a rheumothologist ,got tested for ra, sjorgens,ect ect everything negative.then she started using the word fybromialgia and i said no.i know somebody who uses that word as a way of getting attention(hypocondriac).so i just dont believe its a real disease.ive even been thinking about trying to get partial disability,because we need the money from my paycheck and i cant just quit.but i dont think graves qualifies for disability.i guess i have to get the lab results from my primary.

[Raspberry]

#1182265

Awesome advice from Shirley. Connie I’m sorry you are suffering too – thyroid issues if not properly treated can affect your entire body/mind. I’ll echo Shirley in that it is very important that you learn more about your thyroid labs and how to interpret them so you can be more active in your care. This is more important for Graves than for many other health conditions. There are some great books out there on thyroid disease for the public and all kinds of educational links at the top section of this forum.

To me the key is that even if you are in the normal range for TSH every person still has a “sweet spot” of where they feel best within that range. If you start keeping copies of thyroid labs and noting how you feel at the time as well as having a doctor do more frequent labs you may be able to find that better spot. Also getting another opinion is a good thing too!

[Kimberly]

#1182266

Hello – You’ve received some great comments already. On the disability issue, the process of filing for Disability is very bureaucratic and very time-consuming. If you are currently working, my understanding is that will result in an automatic denial. If you are interested in pursuing the process, though, here is a site that offers attorney referrals: http://www.nosscr.org/

(Note on links: if you click directly on the above 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).

Keep in mind that by law, a disability attorney cannot charge you until your case is settled, although they *can* bill for reimbursement for reasonable expenses such as photocopying medical records.

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