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PCOS

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10 years 6 months ago #47170 by Diana68
PCOS was created by Diana68
Has anyone heard of a connection between PCOS and ITP? I am a nurse researching this. My daughter has both and I see this is far from an isolated case. Has there been any research at all on this co-morbidity? How often are they concurrent and does this give us any clues to the source of either disease process?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 6 months ago #47171 by Sandi
Replied by Sandi on topic PCOS
Diana:

I have seen many, many people with ITP in my 17 years on the Forum, but only a very small number have had PCOS and ITP together. I have never read anything to indicate that there is a connection. The most common disorders that are seen with ITP are thyroid disorders, Lupus, Autoimmune Hemolytic Anemia, etc....mostly autoimmune disorders.

This is an article that details the most common disorders/causes associated with ITP. This can give you some idea as to the disease process with ITP, but my guess is that there is no connection between the two.

www.bloodjournal.org/content/113/26/6511.full?sid=8c7ef2e2-6124-4b2b-9ab8-2eb9dd71d8ef&sso-checked=true
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 6 months ago #47182 by Rob16
Replied by Rob16 on topic PCOS
My wife has ITP and her daughter has PCOS. Does that count?

I see from a quick Google search (PCOS AND autoimmune) that there is a higher than normal rate of autoimmune thyroiditis among PCOS patients. The same is true among ITP patients. So you might be onto something!
The following user(s) said Thank You: Diana68
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10 years 6 months ago - 10 years 6 months ago #47185 by Diana68
Replied by Diana68 on topic PCOS
I think having her thyroid tested, really tested with free and total and re-uptake counts for the T3, T4 and TSH. I'd also like to see her liver's thrombopoietin. There has to be a way to narrow down the source before an irreversible splenectomy.

Any advise? My daughter's doc put her on massive doses of prednisone, which did help her platelet counts, for about a year. The second time he recommended the splenectomy. Aren't there any steps in-between? I'd like a little more than a 60% chance it will work...and for how long is an unknown....before doing something as permanent as that.
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10 years 6 months ago #47186 by Rob16
Replied by Rob16 on topic PCOS
Diana, I don't know who else is actually up, so let me give you a quick response and then let others chime in when they are able.

A normal workup for ITP catches most of the causes of secondary ITP, and unfortunately, beyond that, a primary cause is usually not found. You will find some information on possible causes here:
pdsa.org/about-itp/causes.html

You are right to want to avoid a splenectomy, and as you rightly point out, you never know how long the benefit will last. There is a lot that can be done in the way of treatment before splenectomy is done. In fact, the foremost ITP specialist in the world does not do splenectomies at all. I am sure Sandi will provide you a link to his video... well worth watching.

The most common treatments we see here, after prednisone, are high-dose dexamethasone pulse(HDD or HD-DXM for short), Rituxan (rituximab), WinRho, and the thrombopoietin receptor agonists (TPOs for short): Promacta (eltrombopag) and NPlate (romiplostim). The TPOs aid in platelet production, while the other drugs help lessen platelet destruction. I am not mentioning IVIG as it is not a lasting treatment, but it is useful if platelet levels need to be increased urgently.

For many, not treating is also an option (AKA watchful waiting) if platelet levels don't fall too low, and symptoms are not too severe. ALL treatments have a downside! Platelets at 30k are generally considered safe, unless major surgery is anticipated. We have some on this site who do not treat even with single digit platelet counts.

Some people swear by gluten and/or wheat free diets, paleo diets, and other natural treatment methods.

As far as the thyroid is concerned, I have read conflicting information. There is some correlation between ITP and hyperthyroidism, but there is disagreement as to whether fixing the thyroid levels does or does not help the ITP. But checking thyroid levels should be part of an ITP workup.

What are your daughter's counts? How much prednisone has she been taking?
The following user(s) said Thank You: Diana68
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 6 months ago #47189 by Sandi
Replied by Sandi on topic PCOS
Here is the video:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I'd like to add that sometimes, a primary disorder is not found for years. In my case, I developed Lupus 8 years after ITP, but all tests upon ITP diagnosis were fine. ITP can be a first symptom of something else that may not show up for a long time. Most of the time though, ITP is the primary disorder.

It's normal to want to connect disorders and symptoms to each other, but sometimes, lacking evidence, they are two separate things. If there is a common thread, I would think it could be hormones.

Yes, there are many steps in between and you need a doctor who will present other options. All Hemo's are not well-versed and up to date with ITP.
The following user(s) said Thank You: Diana68
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10 years 6 months ago - 10 years 6 months ago #47229 by Diana68
Replied by Diana68 on topic PCOS
Thank you both so much! I add this to the never ending amounts of information I am collecting. I don't have her information with me right now but will look. I appreciate your input very much. We have just started this journey.
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10 years 6 months ago #47319 by Diana68
Replied by Diana68 on topic PCOS
I believe the first episode was in Sept 2012, her platelet count was down to 7 thousand with almost no symptoms. A little mental fuzziness and some mild bleeding. She was hospitalized her and given Steroids IV. I am still waiting on her file to confirm the numbers and prednisone doses.

Her second episode was discovered 10-2014. If her memory is correct she began at 60 mg Prednisone and is still taking them at 20 mg. They are pushing into all the signs and symptoms of Cushings disease.

Her splenectomy was scheduled for 3/17/2015 but she decided to look into other options. She loves her doc but if I am understanding all this it would seem we skipped a lot of steps straight to surgery. Thank you for all your information. We are still learning......
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 6 months ago - 10 years 6 months ago #47325 by Sandi
Replied by Sandi on topic PCOS
Symptoms of Cushings are pretty common while on steroids. They should go away as the dose is tapered.

That is a long time to be on Prednisone. There are other options.
The following user(s) said Thank You: Diana68
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10 years 6 months ago #47332 by Diana68
Replied by Diana68 on topic PCOS
We are headed to the Doc on Tuesday to look at options. I have read about 8 scholarly journal articles and spoke with two docs and 4 nurses at work. I think we will see how open he is to another course of treatment. Thank you for all your help!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 6 months ago #47346 by mrsb04
Replied by mrsb04 on topic PCOS
Are there any fostamatinib trials in your area. I have been on the UK trial for 4 weeks. Am really hoping it works as I do not want a splenectomy
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10 years 6 months ago #47350 by Diana68
Replied by Diana68 on topic PCOS
IDK, I'll check around. Thank you!