Do you have insomnia with ITP?

Hey,

Since i was born i was diagnosed with ITP (to be exact XLT (X-linked thrombocytopenia)). Because i dont know how it is to live without it i can live a relative normal life. My platelets count is everytime in the 20.000 range and because i never had a severe bleeding i dont currently receive any therapy (as a kid ive received a prednisolone, immunoglobulins and cortisone therapy). That were a bit informations about me.

Since i cant do much because i have a bleeding tendency, ive found some harmless hobbys. Beside drawing, 3d modelling, virtual reality, im really interested in my dreams (intepret them and "lucid dreaming"). Now ive heard from a friend that you can have sleep dissorders with ITP. He explained me that Serotonin is made in the gut. Usually the platelets will transport the Serotonin to the cells and to the brain. Since you have few platelets, just few serotonin can be transported. Because Serotonin is important for sleep, patients with ITP are suffering from Insomnia.

That was really shocking for me since a good nights sleep is important for my hobby. Ive never suffered from insomnia but now, roughly a month after this statement, i will just get 6 hours of sleep per night. (I suspect its a placebo effect).

Now my question is: Is this really true? Do you have ITP and suffer from insomnia the same time? (I dont mean insomnia because of medication).

Sorry for my bad english.

Kind regards.

My understanding is the platelets don't carry that much serotonin.

Why not get interested in family research - keeps the mind working and is a fun "puzzle".

I'm not sure how much truth there is to that. I've heard the low platelet/serotonin theory many times, but it doesn't make much sense to me. Yes, some people with low platelets have depression and some have insomnia, but most do not. People without ITP suffer from those things too. Insomnia can be caused by many things (I have it and my platelets are fine). Getting a diagnosis and worrying about it can also be a major cause of insomnia.

Supposedly, platelets carry only 2% of the serotonin to the brain. That doesn't seem like much to me and I have never read any credible articles to support it.

My understanding is that serotonin does not cross the blood-brain barrier. Serotonin in the brain is produced at the synapses of the nerve endings.

Rob16 is correct. I was fascinated by this when I took a physiology class and a psychology class years back. Most of the serotonin in the body (around 95%, if I remember correctly) is produced and used in the gut, where vascular tone is controlled (hence the name serotonin). For instance, rapid release of serotonin by the enterochromaffin cells in the epithelial lining of the intestinal lumen is a key step in vomiting.

Serotonin does not cross the blood brain barrier, so whatever serotonin platelets may be carrying does not get dropped off into neurons in the central nervous system. Instead, those neurons make their own serotonin, then recycle it through reuptake (hence, the serotonin reuptake inhibitors used in psychiatry). Serotonin is produced in vescicles in the CNS neurons, then migrates to the synaptic endings for release into the synaptic cleft between neurons, which is how one neuron "communicates" with other neurons.

None of this has anything to do with insomnia directly. That's a separate entity, which as far as I'm aware (and Sandi said), is not related to ITP. An obscure sleep disorder runs in my family, so I'm interested in and familiar with insomnia and other parasomnias.

Thanks, guys! That is obviously not my area of expertise.

L tryptophan is needed for Serotonin synthesis. It can cross the blood brain barrier and is transported by platelets so presumably low platelets = low tryptophan = less serotonin in the brain.

This has been discussed a lot - I believe the consensus is there is not that much serotonin involved so a low platelet count doesn't really matter with sleep.

Well, does anyone want to look for articles? I'm poking around too. I've never found anything in the past, but there might be something new out there.

Excellent idea, Sandi. I searched PubMed using the keywords below and got the following results:

1. "ITP and insomnia": One article about insomnia as a side effect when ITP is treated with steroids.

2. "Platelet and insomnia": 31 articles, most of them about insomnia in psychiatric disorders, none about low platelet counts causing or promoting insomnia.

3. "Thrombocytopenia and insomnia": 27 articles, some about complications in hepatitis C, some about steroids in cancer treatment, some on clinical trials.

4. "Tryptophan and insomnia": 147 articles, mostly about the use of OTC or prescription tryptophan in the management of chronic insomnia; some on functional foods or SSRIs in the management of insomnia. (Note that tryptophan is not available OTC in the US, but 5-HTP is.)

MRsb04, whose profile photo is delightful, is correct about tryptopan being the essential amino acid from which serotonin is produced. However, most amino acids simply float around in the blood plasma in what is known as the amino acid pool and do not require specific transport molecules to ferry them about. As I understand it, platelets carry serotonin around because it can be used to regulate the tone of blood vessels, particularly right after trauma.

Thanks. That was fairly informative even though there really was no information presented.

Anyone else?

www.med.ucla.edu/modules/xfsection/cache/uploaded/267298.pdf
CLINICAL VIGNETTE ~ A Man with Thrombocytopenia Who Could Not Sleep
Karo K. Arzoo, M.D., and Maurice J. Berkowitz M.D.
Introduction
We discuss the work-up and treatment of a man that presented with chronic thrombocytopenia, severe insomnia, and debilitating chronic fatigue. He was eventually diagnosed with Lyme Borreliosis. Within months of initiating Lyme disease targeted therapy both the thrombocytopenia and sleep duration significantly improved.

After long researches ive found this out:

(alpha granules) Contents include insulin-like growth factor 1, platelet-derived growth factors, TGFβ, platelet factor 4 (which is a heparin-binding chemokine) and other clotting proteins (such as thrombospondin, fibronectin, factor V,[2] and von Willebrand factor).[3]

The alpha granules express the adhesion molecule P-selectin[4] and CD63.[5] These are transferred to the membrane after synthesis.

The other type of granules within platelets are called dense granules.

Source: en.wikipedia.org/wiki/Platelet_alpha-granule

Then there are "Lysosomes" which digest some substances, split them in their elements or tranport toxic substances out of the body. (It has nothing to do with trypthophan or sleep). Then There are Mitochondria which make "adenosine triphosphate" (ATP) It has a role as a neurotransmitterin the brain, but i dont know which role, yet. Then it can transport glycogen with the glycogen vesicles. The role in sleep is unclear for me either.

The dense granules of human platelets contain adenosine diphosphate (ADP), adenosine triphosphate (ATP), ionized calcium (which is necessary for several steps of the coagulation cascade), histamine and serotonin.[2]

Source: en.wikipedia.org/wiki/Dense_granule

Yes, histamine regulates the sleep cycle, but it cant pass the blood-brain barrier. (it has to be synthesized from Histidin). Source: books.google.de/books?id=6JmCAgAAQBAJ&pg=PA60&lpg=PA60&dq=histamine+blood+brain+barrier+histidine&source=bl&ots=ZRU-1S9va4&sig=SEJtAWWbh3UXMmSd8fcUVQ9N8Us&hl=de&sa=X&ved=0CCkQ6AEwATgKahUKEwj5voW4qdrGAhXpk3IKHQ4DDvQ#v=onepage&q=histamine%20blood%20brain%20barrier%20histidine&f=false

I didnt find a clue why platelets should transport l-trypthophan (Ive just found 2 websites but (one was pdsa.org )) which statet that but there wasnt a scientific explaination or proof (not even a source).

@Rob16

But the insomnia was a symptome of the lyme borreliosis, not because the thrombocytopenia.

EDIT: Ive found out that ATP and ADP just can be used in the cell where its made because its a nucleodite. It cant be provided to other cells. Lets say, ATP and ADP was made by the mitochondria in the placelets, it just can be used in the placelets. But because the neurons have mitochondrias too, it can be used just for them. The platelets have not something to do with the ATP &ADP transport to other cells. The mitochondria produce it just for the platelet function. Source: www.ncbi.nlm.nih.gov/pubmed/16515502

EDIT2:

Glycogen is abundant in the platelet cytoplasm, where it serves as
a major energy source for a variety of functions, including the release
reaction [1,2]

Source: www.omicsonline.org/open-access/a-simple-method-to-quantify-glycogen-from-human-platelets-2157-7099.1000217.pdf

So that means that the glycogen in the platelet is just used for its own function (It seems to be for the viability of the platelets (Source: www.academia.edu/247183/Factors_Affecting_the_Viability_of_Human_Platelets )) and wont be provided to other cells. The glycogen which is important for the rest of the body is made in the liver. Then it will be synthesized to glucose which will be transported over the blood plasma to other cells. Source: en.wikipedia.org/wiki/Glycogen

Over all it seems that the ITP wont play a role in sleep or other neuronal problems. Would you confirm that?

Rob16 wrote:

www.med.ucla.edu/modules/xfsection/cache/uploaded/267298.pdf
CLINICAL VIGNETTE ~ A Man with Thrombocytopenia Who Could Not Sleep
Karo K. Arzoo, M.D., and Maurice J. Berkowitz M.D.
Introduction
We discuss the work-up and treatment of a man that presented with chronic thrombocytopenia, severe insomnia, and debilitating chronic fatigue. He was eventually diagnosed with Lyme Borreliosis. Within months of initiating Lyme disease targeted therapy both the thrombocytopenia and sleep duration significantly improved.

Should be more appropriately titled "A Man with Lymes Who Could Not Sleep".

My search words were "Platelets and Serotonin" and "Thrombocytopenia and Serotonin". Didn't come up with anything. I'll search more tomorrow.

For everyone who is interested, ive edited my post:

pdsa.org/forum-sp-534/6-general-itp-discussion/28799-do-you-have-insomnia-with-itp.html#49907

Darky wrote: @Rob16

But the insomnia was a symptome of the lyme borreliosis, not because the thrombocytopenia.

The insomnia and the thrombocytopenia were both symptoms of Lyme Borreliosis; the thrombocytopenia was an immune reaction to the Lyme. The patient presented with thrombocytopenia, and if the Lyme had not been diagnosed, the patient would have been diagnosed with ITP.

Darky, you need to give details of your quotes. It's the done thing for the writers of the papers to be acknowledged. It also means that anyone reading your post can go look directly at the source. It also enables people to see if it's old or current thinking.

You are right. Ive editet it in.

Darky wrote: Over all it seems that the ITP wont play a role in sleep or other neuronal problems. Would you confirm that?

Yes, until something comes up that proves otherwise.

I guess i´m the living proof that ITP wont play a role in sleep. Today i´ve had a day off and ive slept 12 hours. But it would be great to hear from other people with ITP how their sleep is.

I always slept great, even when I was on high doses of Prednisone. I was so exhausted by my job and my kids that sleep was never an issue. I never got to bed before midnight and was out like a light in seconds.

Now is a different story.

My thought [always] is we give way too much credit and authority to ITP.

Hi

As always my unscientific input, - I never have / had trouble sleeping, in fact the reverse. When counts low, preceding any flare up I feel / felt drained nodded off at any time of day or night.

When on Prednisone, I had to go on sleeping tablets, as I felt wired. I felt like I was climbing the walls 24/7 couldn't wait to take the sleeping tablets to put me to sleep, the way I was on that drug, my wife happily remembered that I needed my sleeping tablet, and it was funny how she bought the time I took it forward each night!!

Not sure my comments are valid to the topic as I work nights! So my sleep/ wake pattern is pretty messed up. When i'm working I pretty much do nothing but sleep between shifts. Mind you at the end of my shifts when I have a couple of days off I've been know to pull 24hr days!

That said my platelets are not constantly low. I usually respond to treatment that without notice just start to bottom out and than need to treat again.


When my platelets are low I can sleep 24hrs a day.

I always sleep better than usual when my counts are low. In fact one of the first signs of a platelet count drop for me is falling asleep early and sleeping in the morning, which I never do with normal counts.

Interesting ..the lower my counts the worse I sleep

mrsb04 wrote: Interesting ..the lower my counts the worse I sleep

That's just it - nothing is for sure and we are all different. And again, I always say we give ITP way too much credit. So far the only thing I can blame on ITP is lower than normal counts. I think we get something in our head and think ok that's because of ITP and then it becomes a "symptom", who knows we may have had that whether we had ITP or not.

And on that note, I worry that other problems may be undetected or ignored because many assume that ITP is the cause of a particular symptom. It happens all the time, especially since Vitamin deficiencies and other autoimmune disorders are common with ITP.

@Sandi

I dont think that ITP itself can cause Vitamin deficiencies (why should it?), but i think that Vitamin D can cause ITP. I have Vitamin D deficiency but i guess its because i dont go outside very often.