Mast Cell Disorders Forum - Elevated Heparin

deblevstern

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Elevated Heparin
05/02/12 at 16:34:51

Hi all,
I saw Dr. Afrin last week and he ran alot of tests to attempt to definitively diagnose MCAS. He doesn't have them all back but wrote me that my Heparin level was 4x the upper limit of normal and he doesn't know anything else that would do that. I am so excited that I may finally have found what is wrong with me but don't want to get my hopes up just yet.
Any feedback on this high Heparin level appreciated. Thanks so much. Debbie

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Lisa

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Re: Elevated Heparin
Reply #1 - 05/04/12 at 02:48:14

Hi Debbie!!

Elevated Heparin levels was first cited by Drs. Roberts and Oates in the late 80s. This is indeed confirmation of mast cell activation. It´s rarely asked for, however, which is why you don´t hear much about it.

I fully understand your emotions! It´s a bittersweet thing this cause at one point we´re celebrating that finally something has been found to SHUT the mouths of the doctors who keep saying "It´s all in your head"!! So sad that the medical community has come to this point of so failing us. Yet on the other point it´s a RELIEF that finally you can get some answers and with them, TREATMENT!!! With treatment comes IMPROVEMENT!!!! Cheesy

And that is truly worth CELEBRATING!! Smiley

I suggest that you do something to commemorate the victory, for you are finally on the right road to diagnosis and the light at the end of the tunnel is growing stronger!!

Hugs!!

Lisa

ps - this is confirmation that you need to be on a mast cell stabilizer. Ketotifen is cheapest.

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Don´t forget, there is so much more to life than being sick!

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deblevstern

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Re: Elevated Heparin
Reply #2 - 05/11/12 at 15:34:36

Thanks Lisa. Are you aware of anything else that could cause high Heparin levels?
I am a bit anxious about this since I have started low level H1 and H2 twice/day each and my face is stinging terribly since I started! Yes, I have had this before, but not this strong or frequent. Also Quercetin always took the sting/flush away and isn't working since I started the H1 and H2 blockers. I don't know what to think. I think I will try them once day each and see if that's any better. Interestingly the H2 blockers definately help alot with my ear pain and itching. Still the facial stinging is definately worse.
Any suggestions appreciated....I sure hope it ends up being MCAS as Dr. Afrin strongly suspects. All tests not in yet.

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Futurehope

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Re: Elevated Heparin
Reply #3 - 05/12/12 at 02:47:28

deblevstern,

I'm so happy for you and Lisa said it well. It is such a relief that there is something identifiable that is wrong, because many of us were told "there is nothing wrong", or "it is all in your head", or "are you anxious (do you need an a antidepressant?)" Now, you have medical proof.

I know Dr. Afrin said that if anything changes in your regimen, change only one thing at a time so that you know what is causing what.

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WendyH

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Re: Elevated Heparin
Reply #4 - 05/12/12 at 04:34:56

I am wondering why alot of you are having a hard time being diagnosed? I read this over and over. When I was first diagnosed w/masto it was in 1995 when I started getting all the spots. Went to a dermatologist who had seen masto before (I had never heard of it) he did a skin biopsy and it was positive. Then as symptoms progressed badly my doc sent me to MD Anderson and they did bone marrow biopsy and aspirate and again bad news. I never had a heparin test, 24 hr urine or anything like that. Is it just because I had the UP first that it was easily diagnosed. Do none of you having a problem being diagnosed have UP first?

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DeborahW, Founder

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Re: Elevated Heparin
Reply #5 - 05/12/12 at 05:35:12

I would say that it could be that the UP spots were the reason that you were immediately diagnosed. It could also be that you were simply lucky. I don't know the statistics of how many mast cell people have UP vs those who don't. I feel that on the forum, fewer people discuss UP spots as opposed to other symptoms. Does that mean they don't have spots or simply don't discuss them? Don't know.

I do know, however, that assuming one doesn't have spots, it is nearly impossible to find a doctor who can recognize it. Most of us go through doctors and ERs for years without our symptoms being recognized. It took me 10 year to get diagnoses, and I had a doctor working hard to figure out what I had. Doctors are taught to look for basic symptoms of anaphylaxis and thu don't recognize the other symptoms of anaphylaxis that we have. Once pointed out to them, then they see it, but they don't realize it on their own. Of course, before we are diagnosed, we may never have heard of mast cells, so we can't suggest it to them.

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Feel well!
DeborahW, founder

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iamnotalone

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Re: Elevated Heparin
Reply #6 - 05/12/12 at 06:30:41

Deb;
Are UP spots the same as Telangectasias ? I get the chronic hives after a flare & the facial swelling. They last about a week with the prednisone, etc. (I'd had them for almost a year prior to my acute reaction) & after reading a link on here-I think I have had at least 2 "acute urticaria" peisodes...Or would that mean I just Have it- period ?
I know my TMEP spots look very different from my hives (altho the TMEP spots vary too). Oh this is confusing. I wish my dr. knew more! Huh

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Elevated Heparin Reply #7 - 05/12/12 at 07:34:57 No, UP and telangiectasia are two different things. I've seen UP only once, and it was relatively flat, roundish dots (many). There are pictures on Google Images. Sometimes they are said to have an orange or brownish coloration or change to brownish over time. The ones I saw looked more reddish.
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cutty sark

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Re: Elevated Heparin
Reply #8 - 05/12/12 at 08:19:00

Yes Joan, they fade to brown. In my case (according to Dr Dawe) the ones that are faded are less/not active. I have on occassion been able to watch one 'happening' - the red lesion appearing and spreading. Shocked

I have a mix of both red and brown at the moment. In the past couple of years they have appeared on my face, I use Clinque Even Better Cover Foundation (shade 7) which covers them well enough for me. I'm Scottish so our skin is so light it's been described as almost blue so that shade would not suit everyone.

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WendyH

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Re: Elevated Heparin
Reply #9 - 05/12/12 at 08:33:22

My UP spots are a reddish brown all the time until I go in the sun. Then they turn blood red, raise and itch like crazy. Not sure why but just recently about 1/2 of my spots have vanished. Never heard of this but the symptoms of the SM are worse not better. Also years ago when I had my first biopsy of the UP on my back it came back UP. Then a year later another doc didn't believe it so he too did a punch biopsy from one of my thigh. It came back TMEP. I was told that TMEP kinda looks like reddish spider webs and that is what my legs look like being in the hot sun too long along with the raised red UP. Has anyone had their blood taken and tested for circulating mast cells? Last time my doc wanted to do it the lab had no idea what he was talking about so we didn't do it. I really didn't care to check how its progressing just like I refuse anymore bmb. (6 or 7 in total so far) I am not going thru it any more since the docs say its only to track the progression since there is no way to stop the progression. Also I saw on this site info about Mastocytic Enterocolitis. Wow they finally gave it a name? When I had the colonoscopy done several years ago my doc had the GI doc test for mast cells. And it came back positive but they never gave me that name. So now my question after all this blabbering, Has anyone had UP spots disappear, do they stay gone or just come back.

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cutty sark

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Re: Elevated Heparin
Reply #10 - 05/13/12 at 03:20:23

Hi Wendy

I have UP and TMEP. TMEP manifests in two distinct ways for me. I did have the 'spider like' lesisions on my face and had laser treatment for those a few years ago, that worked well. The other, and most difficult to shift, is the blotchy rash that is on my neck and half way down my chest. By blotchy, I mean it is mainly red but with a few white patches, it looks like I've had hot water spilled on me. The UVA1 light treatment I am having at the moment is masking this a little as my skin has darkened as a result of the treatment. As for the UP, I have that all over and mainly in clusters although I do get the odd random one appearing - like this morning, it starts with an itch then you can actually see it forming, freaky! I've never had any spots disappear. Sad

Sweats at night and during the day (at any time and for no reason) I know this is refered to as flushing - we call it a tropical moment LOL. I take singulair at night and that helps a little with this.

Also get very light headed if walking any distance, so have started to carry a walking stick if I know I'm going to be out and about (got a nice jazzy snow leopard print one). Fatigue is probably the worst thing I have to deal with - I work full time and it's difficult to keep going all day - by mid afternoon I really need a couple of hours rest, thankfully I can usually work around this by starting early am then working in the evening. Colleagues are very supportive so that helps.

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