[Alyianna]

in reply to: 6 Year old son with Graves Disease #1175162

My heart goes out to you and your family. This is a struggle for me at 44 years old and my family. I cannot imagine what it would be like to go through this at age 6.

[Alyianna]

in reply to: I am so COLD all the time! #1175156

I have the opposite problem. I am always super hot… burning up all the time. I’m usually in my down coat regularly after like the end of September. Not this year. I have worn a jacket twice. I am out scraping the frost from my car windows in just some light clothes. I huddle around a desk fan at work, and sometimes it is s bad I pray for snow so I can go lay in it! LOL!

Odd thing for me is… I felt this way when I was severely hyper… but now I have been medicated to be hypo and easing off on the Methimazole.

What do you suppose can be done about our body temps being so off, yet our meds appear to be working? I don’t want to think of possibly have to deal with this issue long term!

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1175020

Thank you Kimberly! That is very interesting and I think I should bring this up with my Endo next visit.

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1175017

I have never heard anything about taking Ibuprofen (Motrin) with Graves. I know my doctors all know I am popping Ibuprofen like crazy… 800mg at least a couple times per day.

Can someone tell me why this would be a bad thing in conjunction with Graves?

[Alyianna]

in reply to: Endo appointment with a new doctor, WOW!!! #1175144

I have been on Methimazole for a few months. The doctor stopped the beta blocker after the last appointment a few weeks ago. Most of my symptoms are much better except the muscle/joint pain… but it seems not everyone gets that.

Polish, may I ask why you chose surgery after 2 years? I am just curious because it seems like you just swapped taking one drug for life for another you would also be taking for life… so I’m not sure why so many people do the surgery or the RAI after some time passes on Methimazole. Does it quit working? Is it harmful to take longterm? I want to be prepared and no one has told me this course of action is temporary, yet seeing other people’s personal experiences it is starting to seem temporary.

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1174996

I certainly have an open mind and want to explore all potential causes and such. I think the frustrating thing for me is that my life altering symptoms are being discounted. No one wants to deal with those. The endo think the rheumatologist should be handling that and sends me there… the rheumatologist spent 5 minutes with me and said it is all thyroid related and that my endo should be handling it. Meanwhile, being blown off just puts me in the position that I am just medicating symptoms and hoping it’ll just go away.

While I wouldn’t wish this pain on anyone… I am glad to hear there are others with similar issue.

And… I hope some doctor in my area will take it seriously… because Vicodin is not the answer… and that seems to be what they are going to as the default answer without even taking any responsibility to actually seek the cause.

I don’t want to research stuff… I didn’t go to med school out of choice. But I do want those who did go to med school out of choice to do a little research. It is frustrating to dump the kind of money they charge just to get some nodding heads and prescription for a narcotic before they move on to the next assembly line patient.

I live in Dubuque, Iowa… that is likely a huge part of my problem. The closest place we go for good quality care is Mayo, which is ~4-5 hours away. As often as I am going for labwork and such, it’s not feasible for me to go that far away… I don’t even have enough time off work to cover that.

So… if there is some kind of hope to be found on a website posted to a forum… I am grateful… because it sure is a hell of a lot more hope than I am receiving in the doctor offices.

Sorry for the rant, I am way beyond frustrated and so tired of popping pain pills just to be able to join society.

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1174992

Well… whether the removed link was credible or not, it really does match my symptoms VERY well. Definitely something for me to research and ask my doctor about… maybe even ask for a referral to a neurologist and see what they have to say. Thank you for posting this! It gives me hope that in due time, my levels will be evened out and I may return to some kind of normal.

The pain, for me, is the only symptom I have that I am struggling to deal with. I can handle the rest because they make my life unpleasant but they do not stop me from living. The pain… stops me from fully living.

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1174983

For me, the pain is not caused by the ATDs because I had the pain before I was diagnosed and medicated. I have went from Hyper to Hypo and the pain levels are up and down without any sort of reasoning… but even the best of the good days are not pain free.

There was a time when I went from being in such high pain I was requiring narcotic pain relief to a lower pain and getting by using ibuprofen and tylenol only… that occurred just a few days after I quit taking the 100mg of Atenolol. My doctor didn’t wean me from it, just told me to quit taking it. The following two days were nearly unbearable pain-wise… but then there has been some improvement.

Now, I consider myself as feeling MUCH better… and I do feel much better… but the joints/muscles/bones still hurt, it’s just more tolerable… but still at a level I should not have to tolerate I also have swelling.

I was sent to a rheumatologist. He quickly looked me over, said there wasn’t anything he could do for me, and added he thought it was all Graves related. The Endo says he cannot do anything for me because it is not Graves related… and the only person who will even listen to my symptoms is the Infectious Disease doctor I was set up with when I first went to the GP before diagnosis! Oh it can all be so frustrating and maddening!

I’m going to try the Tonic Water. I have nothing to lose

Thanks for reading my vent if you made it this far

[Alyianna]

in reply to: Joint/Muscle Pain – How common? #1174973

I have had severe pain. It is hard to tell where it comes from most of the time. Sometimes it feels like my joints, sometimes I think it is muscular, sometimes it feels like my bones are inflamed! I have even had inflammation testing which does reveal I have inflammation… whatever that means!

This was debilitating and what took me to the doctor to begin with. I was put on Vicodin which I would take as soon as I could possibly take the next dose and was also taking a regular dose of ibuprofen just to get through the day.

It’s been over 2 months now and I have went from 30mg Methimazole to 15mg and now, these past couple weeks 5mg. I still have aches and pains just as described but nothing NEAR as severe. I am not taking the Vicodin anymore but still do take the ibuprofen… only as needed though, not constantly.

The doctors I see do not seem to be concerned with the pain at all. They just seem to think once my levels are stabilized it will just go away. I am really hopeful this is the case. My body feels like I am 95 years old when I am only 44!

Lets hope someone here has a success story to share that will give us some hope.

Aly

[Alyianna]

in reply to: Husband’s definition of support… #1174908

Very well said, and some wonderful advice Naisly! I think things would become much easier once you get medicated, regain the logical, lose the overemotional caused by Graves. It couldn’t hurt to try Naisly’s approach to getting your husband educated either. I am pretty sure that would work on most men I know.

The one thing that frustrates me is… there isn’t a quick, easy fix. We don’t just get tested, get a prescription, take a pill and are feeling better within a day or two. I just had my very first day in over 2 months where I didn’t need some kind of pain med to make it through the day! Fortunately, today is another good day! Try to be patient with yourself and I wouldn’t suggest making any big decisions regarding anything until you are really feeling well again. Our minds are more affected than we think while we are still sick.

[Alyianna]

in reply to: Stop Atenolol at once? #1174880

Thank you! I took some Hydrocodone and Benedryl and went to bed last night. I woke up feeling better so maybe it wasn’t related to abruptly stopping the Atenolol. So far, I am still feeling better.

It’s a rollercoaster these days… never know how I’ll feel day to day, sometimes even hour to hour. I really miss my old self and hope she is still in here somewhere.

Thank you again for the responses… it’s nice to know there are people out there who can relate.

Aly

[Alyianna]

in reply to: Stop Atenolol at once? #1174878

Thank you so much for your replies. I was on 100mg of Atenolol. I took that dose all at once in the morning. This morning, I didn’t take it, just as the doctor said (I had him clarify I was to just stop, instantly, all at once).

I was ok this morning but starting late afternoon I am not feeling very well. My neck hurts, like the muscles up the side and glands? under the jaw. My jaw feels tense, and I have a headache.

I am not sure if it’s related to not having that medication or not, but I’m feeling badly enough that I am thinking about taking a half-dose or something. I am trying to just hang in there for another hour or two and hopefully sleep it off without taking anything aside from some ibuprofen. Maybe it’s not even related.

[Alyianna]

in reply to: Methimazole question #1174811

I am impressed with your cutting skills! I wasn’t even very comfortable cutting them in half to come up with 15mg (down from the original 30mg). I just called my doctors and told him I would like to switch to 5mg pills. It is SOOO much easier now. I would recommend it.

As a side note, this is my first post, so hello everyone

[Author]

Posts