[vanillasky]

#1059678

I have not writen in a while. I have developed purplish-red spots mostly on my face and some on my stomach. I have also found some on my arms. They fade within a few days, but then I see more!

I called my primary care doctor and he asked me to come in. Now in all honestly, he is not very good but the best I have here in upstate NY. So he said I might have ITP which is a blood-clotting problem that my mother was hospitalized for about 2 years ago. When blood platelets go below 150,000, they are concerned. The patient begins to bleed through the skin, thus leaving red pinpoint spots on the skin. It has been difficult to cover them with makeup. I just seem to bleed through!!

He also thought it could be the Tapazole and maybe Aspirin, or possibly another NSAID I take for my chronic migraines. As a result of this, I am off tapazole and too sick to get get myself to the hospital blood lab. It would be interesting to see wwhat TSH is right now.

Since Sunday, I have been feeling extremely warm, nauseated, sweating a lot and headachey. Very depressed and wonder why I’m even here on this earth. I lash out a lot and got a stupid letter summoning me to be a trial juror which I ranted and raved and was excused. In essence, I cannot cope. I think a lot about the “bridge” and I had one, I just might want to use it.

Tomorrow I will try to get to blood lab. don’t know if this is hyperthyroidism or just my ugly menopausal symptoms revving up. Doctors here know nothng. Any words of wisdom would be appreciated. I’m pretty down right now and husband is taking it too lightly. My mother is old and doesn’t understand HOW I could feel so warm.

I went outside in my nightgown and slippers. It was 14 degress and this is the only thing that seems to help.

Karen

[Kimberly]

#1176717

Hello – I wish I had some better words of wisdom, but all I can do is send cyber {{{hugs}}} and tell you that things will get better, if you can just hang in there. I’m not super familiar with ITP, although I worked with someone in a mentoring program who had this issue. She did have a couple of scary episodes with low platelet count, but went on to continue working and to get a second college degree.

If your symptoms become more worrisome, if your thoughts about “taking the bridge” become more prevalent, or if you still don’t feel well enough tomorrow to get labs done, I would really encourage you to call 911 for assistance.

Also, have you ever thought about letting your husband read these posts? You express yourself very eloquently online, and that might help really get through to him what you are dealing with and how much it concerns you.

Please take care of yourself!

[jaqeinquotation]

#1176718

I’m so sorry that you are feeling this way and I pray that you get some relief soon. I wish it wasn’t so hard to find and get quality care. Please try to get into the lab to have your blood work done. I know its hard-rest assured I know the feeling. When you speak of the “bridge” what do you mean? I think I have an idea but I hope I am wrong.

Hope these quotes help:

“The greatest act of faith some days is to simply get up and face another day”

“I am woman, I bend I don’t break”

[AzGravesGuy]

#1176719

Karen, sent you a PM.

[rae5]

#1176720

Karen,
You have every right to feel how you do, I think you have done an amazing job so far and through your posts have shown just how strong you can be. What you have been through and are going through would have broken some people already a long time ago. I quite like the famous ‘I am woman hear me roar!” then add graves, family, husbands and spots etc and really hear me roar!!!.. And sometimes, when we run out of ‘roar’ we are left with this horrible dark depression, feeling like we just can’t go on anymore.
I’m hearing you and am right there with you in thought.

Im not sure about wisdom but here are my thoughts…Karen, you might be full!! Picture a jug that gets filled over time with water bit by bit…The jug is you , and everytime you experience something thats stressful, it fills you up a bit, then a bit more, then a bit more…its gets harder to cope as we get more full, and then one day, one more thing happens and we have no room left for it. At that time, we simply cannot fit anymore in and there is so much in there it’s so hard to go on.
The question is, how can you make some room? Only just a little bit, and you will find strength you didnt think you had. Is there something nice you can do, that’s just for you? I am guessing you probably arent keen to go anywhere feeling like this, and with the spots, but can you take time out? Take some really big breaths! I have a bath with candles and incense and concentrate on just breathing when I am full. Just relieving a tiny bit of stress gives that little bit more strength at that time when you really really need it.
I dont recommend you take a bath at the moment though, but something else?

I think you can cope, you sound like an amazing woman!! Need to change the ‘I cant cope’ to a ‘maybe I can cope’…

As far as ITP goes, My sister had it many years ago, they removed her spleen and she has been in remission since.

Karen, I dont mean to alarm you but ITP can become extremely life threatening. Do you have bruising as well or just the spots that are bleeding through?

I very strongly urge you to get medical attention as soon as you possibly can, if calling 911 is the only way to make that happen then I suggest doing that.
I imagine that would also get your husbands attention rather quickly too!
There is obviously something going on with your health, the sooner you find out what that is,the better. I dont believe menopause causes spots? The other stuff could be graves, menopause or something else. There is only one way to find out.

Most important, look after you!. Everyone else can wait.
Rae

[catstuart7]

#1176721

((((Karen)))) so sorry you are going through this. Just remember even though it feels impossible and awful that your thyroid hormones are fooling your brain – there’s no way that suddenly being taken off tapazole won’t cause a spike. This will affect your emotions and your thinking so please try to remember there’s a funhouse mirror reflecting reality back at you right now, don’t trust it. I hope you can get help soon and agree with everyone else, please call 911 if it’s the only way. We are here for you.

[snelsen]

#1176722

Hi Karen, I agree with all that has been said. I do suggest that you express concern about having your Tapazole abruptly stopped. Certainly agree with you that you need thyroid labs, plus the other labs that would be relevant to ITP.
I have taken care of, and currently know quite a few people who have had ITP.
I don’t know if you are seeking information about it, and at this point, it seems like that it was mentioned by your primary, with little information to back it up…like LABS! So sorry he did not think to get them done when you were there. I suspect it could be a side issue, but here is a reliable, and reassuring site with information about it.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001562/

I TOTALLY know how you feel right now. Been there. Being menopausal, hyperthyroid, with your red spots, plus you just feel like crap. Tough, really tough. I wish your husband would read your posts, too. They are eloquent, and express exactly where you are and how you feel. Any way you can get a ride to/from lab? Is there a doc you can call, even the primary one, and ask him to order a panel of labs, thyroid, and others (certainly RBC, platelets, etc. This is called a CBC. But I am sure he knows all that.

I REMEMBER CLEARLY walking outside during a blizzard in Iowa, with temp hovering around 5 degrees, in shorts and a halter top. I was finally comfortable. I was also crazy hyper, and the heat was making me crazier. I get it, I really get it.

How are you feeling tonight? Will you be able to sleep. Dig out a fan, if you have one.

I understand from your posts that these spots are NOT bleeding, as I think someone thought they were, in one of the responses. If your doc has mentioned the word “Petechiae” that is the medical term for tiny red spots under the skin. If you want to read a bit about the, go to a Mayo Clinic website, there an overview there.

++**seems to me that a big concern for you is the abrupt cessation of your Tapazole. I recall that you are in a sparsely populated in upstate NY, but do not recall if you have seen an endo, and/or if the primary has initially prescribed the Tapazole. He should know not to abruptly stop it without more information and labs, I’d think. And, if you are taking a lot of aspirin and NSAIDS, I am hoping that a doctor can prescribe a different med for your migraines. You know from your mom, that you will be ok if you have ITP.

Everything, cause you are hyper, makes your real health problems more real.
I bet Azguy had some good stuff for you. Will you be able to get labs, or be seen tomorrow? I agree with others, that perhaps going to an ER is an option, but I also feel that you need continuity of care, not a shot in the dark, with multiple symptoms in an ER. Most likely, they will tell you to follow up with your regular doctor, But it might be a way to get some labs done.
If, however, your heart rate gets rapid, over 100+, and you are hyperthyroid, I think you should go to an ER.

I am hoping you get some help from your husband, and some good medical care soon. Can you get to an internist? All of this will be better in the future, but this is the NOW, and all of us care about you right now. I hope you get some sleep tonight, sleep deprivation makes all much worse. ARe you sleeping?
Shirley

[vanillasky]

#1176723

Thank you everyone for all your kind words, concern and support for someone you’ve never seen and may never meet. You are the only ones that understand this horrid disease and especially the ladies, if they are in menopause, know this is a real challenge for us.

I do spend a lot of time crying. Maybe that’s bad but it actually makes me feel better. I want time alone, but can’t get it because husband is on disability and with me all the time. Sighs……..

@Shirley: Shirley, I do not sleep well. I don’t know if it’s menopausal problems or Graves’. Doctors don’t understand and neither do I. I have night sweats, and wakeup at least 3-6 times a night. I have tried every HRT in the book and nothing works. Been to several gynecologists and hormones specialists. Pills, patches, testosterone, progesterone, creams, lotions, sprays, nothing ever helps.

So right now I am using nothing. It really makes no difference.

@Kimberly: thanks for your kind words and I owe you an apology for never getting back to you but have not spent a lot of time on the computer because I have been so disgusted with feeling so poorly, I don’t always look at the site so I’m sorry for not getting back to you. Please forgive me.

My dear Graves Guy, you are like a rock anyone could break themselves against. You write of such courage and knowledge. You have a great attitude. Thank you so much!

@Rae: You are darling! I wish we were friends in person. You are very, very kind with your explanations and visuals that really make me think.

And if I left out anyone, please know I’m writing this from memory and it’s not too good, but all of you have been fabulous.

I will tell you my primary care doctor who is here in Rochester, is not very good, but when I explained I nearly lost my mother to ITP, he did do a blood test to see if I had it. I have to wait for results. She started the same way with pinpoint purple-blood spots and her platelet count was below 100,000. It was difficult for me to see her like that. Her lips were purple, and she was urinating blood. I remember interns in the ER whispering “Leukemia.” Thank God they were wrong. I had lost my father a while before and I was not ready to lose my mother as well, but are we ever prepared to lose someone we love? Never!

She had 4 transfusions of platelets and is doing fine today.

I have taken it upon myself to stop aspirin and I try not to take Naproxen 550 but the headaches are soooooooooooooooooo bad, if I don’t take it, I will have to spend the entire day in bed,

As far as me being strong, people tell me I am, but I’m not so sure. I get down in the dumps a lot and feel like it’s a communication problem with the few friends I have, certainly the husband and mother, I can’t blame. She is 87 and not understanding all of this because she never encountered any of it. She just knows alot about thyroid cancer because my father battled that.

I must get into that lab tomorrow and it won’t be easy feeling the way I do. There are always strange women there and they are not very accomodating but that is the only place my insurance pays for the largest portion of bloodwork.

BTW, my primary care is telling me to go to a dermatologist when I know it’s certainly not a rash. I have nightmares of waking up with a bloody nose and bloody urine like my mother did.

[adenure]

#1176724

Hi, I’m sorry you’re going through so much. I don’t have a whole lot of advice, but you mentioning the migraines made me feel like I should share the information I got from my own doctor when I was dealing with headaches. I don’t have the info. right in front of me, but I’ll do my best to remember as much as I can.

I went to a headache class that talked about all the different types- like tension, migraines, and cluster. You said you’re taking high doses of NSAID’s. I remember being told that things like Advil & Tylenol should only be used 2 days a week or the body gets used to it, expects it, and will have rebound headaches. The neurology department had different medications that, after being taken for 4-6 weeks, are supposed to help prevent headaches (including migraine). The drugs are FDA approved for migraine relief and prevention even though that isn’t their primary purpose. The drugs were from 3 groups: anti- seizure medications, anti- depressant medications, and betablockers. I don’t know the doses or the specific names, but that is what this neurology dept. prescribes for headache prevention. Naturally speaking, I guess B2 & Magnesium are supposed to be helpful as well. Acupuncture was also recommended. Maybe your primary would know of any of the above approaches instead of the NSAID’s?

I’m sorry I can’t remember much else, but maybe another approach to treating your migraines would help?

[Robboford]

#1176725

Hi Karen,
Hang in there. I am sending you cyber hugs and kisses from down under and my heartfelt best wishes. The last 6 weeks of my Graves’ journey has been the worst of this flamin’ good for nothing disease so far but please know that I have drawn great strength and inspiration from your posts. I am sure that I am not alone and there are many other Forum Members out there who would agree. You have been through so much so far (and triumphed – you Warrior you) and I truly believe that this time for you is one of those speed bumps (not sure if you call them that in the States) in life that we have all encountered and in most of our cases – will conquer or are in the process of conquering. Battle on!
Love hugs and kisses,
Debbie

[Kimberly]

#1176726

Hi Karen – Please let us know how you are doing today…did you feel well enough to get back in for a set of labs? You definitely want to stay on top of this since you are currently off the Tapazole. And did you hear back on the platelet test? Wishing you all the best!

And many thanks to all of our caring members who took the time here to share an encouraging word!

[vanillasky]

#1176727

Hi Kimberly, I was all set to go to blood lab today. However, got a letter from my primary care doctor and it kicked back the medical insurance. I don’t understand this because I paid the co-payment when I was there, but the insurance company won’t pick up the rest so now I owe more $$$$.

My husband said they put the wrong code on my new policy. (I had to spin off of his because he has started Medicare) and I am not eligible for another 10 years or so to be on his.!!! This is more frustrating and upsetting.

My last bloodwork cost $460.00 but my co-payment was about $60 so we could swing that. If I go today, it will be $460.00. The COBRA plan they are trying to spin me on is giving up the wrong policy numbers so they are rejecting my plan.

They have told me not to see a doctor or get blood drawn until next Tuesday. The health care in this country stinks!!!!!!!!!!!!!!!!!!!!!:mad:

[Kimberly]

#1176728

Hello – I can imagine this is the last thing you *feel* like doing, but it’s really important to be assertive in getting the care that you deserve. Perhaps your husband would be willing to help.

You definitely want to stay on top of the fact that you are off the Tapazole, since you don’t want your hyperthyroidism to get worse! If it was me, I would repeatedly call the insurance company, call my doctor to tell them that the insurance company won’t cooperate and ask for suggestions, and maybe even call one of those local “on your side” news programs.

If insurance continues to be a problem, there is a group called the Patient Advocate Foundation that assists patients who are uninsured and underinsured — and also some clinics around the country that can provide free/low-cost care.

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

http://www.patientadvocate.org/

http://www.hrsa.gov/index.html (you have to scroll down a bit to get to the “Find a Health Center” option).

Hopefully, one of these options will help you get the care that you deserve!

[vanillasky]

#1176729

Thanks for the information, Kimberly, I appreciate it….

They want me to wait because they “claim” they are sending me new insurance cards. Right now, I have United Health Care and am on husband’s policy, but since his permanent disability, he is forced for Medicare A and B and they threw me under the bus. We have problems paying for it, but are going to tackle this. I do not work because of the Graves.’

I am really anxious to find out what my TSH is. They just don’t take anything seriously. It’s nice for them. They don’t have Graves’ and I really don’t think they care about their patients. Or subscribers, if you will.

[catstuart7]

#1176730

Hi Karen, I just sent you a PM with some info. Wishing you well, I hope all this can be sorted soon for you!

[Author]

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