Admin - Information on understanding your blood results can be found here: cllsupport.org.uk/cll-sll/s...
with more information here: cllsupport.org.uk/article/w...
Spreadsheets for tracking blood tests (with information on the relevance of each test) are available per this post: healthunlocked.com/cllsuppo...
Our Chronic Lymphocytic Leukaemia Support Association Community Guidelines are available here: healthunlocked.com/cllsuppo...
It's not bad. I assume you are in watch and wait? The decision on treatment depends on a lot more factors than just platelet count.
Probably not. It is more important to keep an eye on your trends rather than be concerned about one low (or high) count. Platelet counts can bounce around as platelets only last around a week before being replaced with new ones. Also reproducibility (the ability of the automatic counting to get the same result on repeated measurements) is only at best +/-10 and can be up to +/-40 depending on the laboratory, test equipment, how your blood was treated prior to testing, etc. So your count of 130 could perhaps be 120 or 140 or even further afield and still be considered a 'true' measurement.
Here's a handy table to keep in mind for platelet counts:
100 – 150 Little to no risk of bleeding
50 – 99 Increased risk of bleeding with injury
20 – 49 Risk of bleeding increased without injury
10 – 19 Risk of bleeding greatly increased
<10 Spontaneous bleeding likely
Generally when your platelets get down to between 70 and 100, it is time to start thinking about treatment, with other factors also coming into consideration.
Remember too, that a percentage of normal, healthy people have platelets above or below the 'normal' range.
Neil
Neil... thank you very much for your information... I just had my first 6-mo. checkup, and my whites had dropped from 12,000 to 10,000... and I was glad, but my platelets had dropped from 147 to 119, which concerned me. Your info was verrry helpful. Thank you so much.
Barb
You are a star I was having the same problem thank you very much
Does 81thousand platelets causes the cancer?? I am really worry about my mom...
In my case its 58 . Last week it was 117. Doctor is unable to diagnose the problem. All reports are negative. Then why its happening?
There can be many causes of low platelets, so you really need to see a specialist - i.e. a haematologist to investigate the cause, which your doctor should arrange for you. Some testing can be done via a blood tests, but you may need a bone marrow test to determine what is happening.
Platelets only last a bit over a week, so I would expect that you will need a repeat blood test every week or so to see if your platelets recover. Check with your doctor about what to look for to see if your platelets are worsening. You may notice petechiae (small pinhead sized dots) under your skin, increased bruising or cuts taking longer to stop bleeding, though your current count is still reasonably safe unless you are involved in vigorous/contact sport.
Note that this community supports those with a chronic blood cancer (CLL), which presumably has been ruled out in your case. If you do end up with this diagnosis, we will be here to support you.
Neil
My phlates are above first blood test 1250 now 1300 22 y F
I presume you don't have a blood cancer diagnosis? 22 is very young to have CLL and low platelets is more often the case than high platelets. Have you seen a specialist (haematologist)?
I’m 28 years old and have gotten three blood tests done already and every time my platelet count would be in then 138-140 range. Worried I have some type of blood cancer. Going for 4th bloodwork test tomorrow morning. Should I worry?
The reference range for platelets is around 150 to 450 and that reference range covers 95% of the healthy population. In other words 5% of the healthy population has platelet counts above 450 or below 150. (These reference numbers vary from testing laboratory to testing laboratory.)
Transfusions for low platelet counts aren't given until counts drop below 20 if you have a fever and under 10 if you are otherwise well. Low platelets can be caused by illnesses, drugs, even some foods.
So you can see that your recent platelet counts are barely below the lower reference range and very safely way above the danger zone.
Do you have any old blood test results showing your platelet counts significantly higher? If so, follow up your consistently (barely) low results with your doctor to investigate possible causes. IF they started dropping I'd be more concerned, but note that I'm not medically trained. This just may be your normal. Incidentally, because platelets clump, there's usually far more variation in counts than you mention and the platelets clumped together don't get counted, giving a lower count than is actually the case.
Neil
Thanks for the reply Neil. After the third test I was sent for a ultra sound of my liver which turned out to be negative results, so it’s not the liver. Do you know if Suboxone would cause low platelet counts? And I know I don’t drink enough water, which I’ve fixed recently by staying hydrated. Sorry for taking up your time but I’m just worried it’s cancer or something life threatening. I meet with the doctor next Thursday so I’ll keep you posted.
According to Drugs.com, thrombocytopenia (low platelets) is an uncommon side effect from taking suboxone (0.1 to 1% incidence). It's listed under the hematologic section: drugs.com/sfx/suboxone-side...
Hi Neil your answers have REALLY helped me not panic because I had a test it came as 130 then another in a month and now 90 count. I have been taking these tablets called Xenedtine - weight loss tablets. Could this be a cause? These are the ingredients: can any of these cause low platelets?? Because the Dr said STOP whatever I’m taking now! I have to go for another test in 7 days. I’m really panicking because I’m the healthiest person I know.
Ilex paraguariensis (Verna mate): Capsule: 168mg, Serving (2 capsules): 336mg
extract equiv. dry leaf: Capsule: 840mg, Serving (2 capsules): 1.68g
std. equiv. caffeine: Capsule: 2.52mg, Serving (2 capsules): 5.04mg
Levocarnitine Tartrate: Capsule: 125mg, Serving (2 capsules): 250mg
equiv. levocarnitine: Capsule: 85.25mg, Serving (2 capsules): 170.5mg
Paullinia cupana (Guarana): Capsule: 142.5mg, Serving (2 capsules): 285mg
extract equiv. dry seed: Capsule: 712.5mg, Serving (2 capsules): 1.425g
std. equiv. caffeine: Capsule: 21.375mg, Serving (2 capsules): 42.75mg
Coffea arabica (Coffee): Capsule: 70.86mg, Serving (2 capsules): 141.72mg
extract equiv. dry seed: Capsule: 3.543g, Serving (2 capsules): 7.086g
std. equiv. caffeine: Capsule: 69.44mg, Serving (2 capsules): 138.88mg
Caffeine anhydrous: Capsule: 16.65mg, Serving (2 capsules): 33.3mg
Ascorbic acid (Vitamin C): Capsule: 10mg, Serving (2 capsules): 20mg
Rubus idaeus (Red raspberry): Capsule: 3.13mg, Serving (2 capsules): 6.26mg
extract equiv. dry leaf: Capsule: 12.5mg, Serving (2 capsules): 25.04mg
Ongiber officinale (Ginger): Capsule: 2.5mg, Serving (2 capsules): 5mg
extract equiv. dry root: Capsule: 50mg, Serving (2 capsules): 100mg
Chromium picolinate: Capsule: 66.77mcg, Serving (2 capsules): 133.54mcg
equiv. chromium: Capsule: 8.3mcg, Serving (2 capsules): 16.6mcg
Cyanocobalamin (Vitamin B12): Capsule: 8.3mcg, Serving (2 capsules): 16.6mcg
Folic acid: Capsule: 8.3mcg, Serving (2 capsules): 16.6mcg
Tumera diffusa (Damiana): Capsule: 54mg, Serving (2 capsules): 108mg
extract equiv. dry leaf: Capsule: 540mg, Serving (2 capsules): 1.08g
Salix alba (White willow): Capsule: 2.35mg, Serving (2 capsules): 4.7mg
extract equiv. stem bark: Capsule: 235mg, Serving (2 capsules): 470mg
Other Ingredients: Capsule (Gelatin, Purified Water, Titanium Dioxide), Ethylcellulose Calcium Hydrogen Phosphate, Silicon Dioxide, Magnesium Stearate, Hypromellose.
Hi Emilykate,
I see that you have just joined us and I presume that you don't have a diagnosis of Chronic Lymphocytic Leukaemia. If you did, then your doctor's advice to stop taking anything is even more important, because low platelet counts are common with this disease and what you are taking will further increase your risk of bleeding and bruising. Irrespective, there have been cases of liver damage with weight loss herbal supplements, which in the worst cases have resulted in the need for liver transplants and even deaths. Supplements are generally poorly regulated (varies by country) - you don't know that what you are taking is accurately described on the label.
I don't have the time to go through the ingredients of what you are taking, but one ingredient stands out, not for causing low platelets, but reducing their effectiveness.
mskcc.org/cancer-care/diagn...
Drugs.com states "Avoid using guarana together with other herbal/health supplements that can also affect blood-clotting."
More here:
"Guarana seed extracts possess a strong ability to inhibit human platelet aggregation in response to a variety of agents. Current research supports the concept that unique complexes of catechins, epicatechins, their dimers, and caffeine might be responsible for the anti-platelet aggregation properties of guarana seeds."
sciencedirect.com/science/a...
Drugs.com and the MSK site are reputable sites for your further investigations.
Neil
Oh wow Aussie Neil! You are the best. I bet it’s that. You’re a gem. Thank you so much for the quick response I really do appreciate it.
It’s strange because sometimes in the past I felt like water was trickling down my legs. I’d itch them because I thought it was an ant or something. It was the strangest feeling. I also had vertigo / a bit of a drunk feeling (when I wasn’t drunk) hence having the blood test in the first place. I’m not sure if the weird leg feeling, the dizziness, sometimes forgetful, has anything to do with low platelets. I’m not a dr and have zero clue. I only just learnt that I have platelets last month. 
any advice would be further appreciated thank you Neil.
I'm not medically trained either and my interest in supplements is specific to CLL. That said, the product you are taking is full of stimulants, trying to boost your metabolism. We live in a time poor world, where we look for timesaving shortcuts, by which we often miss out on other benefits. I recommend that you look for more opportunities to build more physical activity into your day, a lot of which you can do with minimal additional time. Check out incidental exercise:
exerciseright.com.au/does-i...
Neil
Thanks Neil! Appreciate it. have a good one! If I ever hear about CLL I know who to come to for answers!
I understood the normal platelet level to be 150 - 450. Do they vary across countries at all?
I appreciate Neil's point that laboratory measurements are subject to variance however and platelet count is only one of many factors to influence start of treatment.
It's difficult not to worry Elizabeth but clearly your physicians are not overly alarmed with your levels at the moment. Have you been experiencing any problems or excessive bruising etc?
I had blood tests done today in readiness for my haematology consult next week and I'm a mass of small bruises from the numerous attempts to extract blood from me, including my hands! I'm clearly not designed for illness! It's so easy to be at the mercy of our 'numbers'.
Regards,
Newdawn
Yes, just had blood taken today as well. Different nurse from usual. She started tapping around on the back of my hand and I felt the need to point out the huge vein in my arm that never fails to give copious amounts of blood on the first attempt.
A comment on platelets....mine have just increased to 80 after hovering in the 50s for a long time and my Hb, which was 11, is now 13.5. I also have had swollen spleen and multiple swollen lymph nodes for the last two years but have avoided treatment since my WBC and Lymphocytes are only creeping up slowly.
Hello mikeje, I am interested to know how long you have had cll, and whether you have had a ct scan to find out if you have swollen nodes in your abdomen etc.
First indications of CLL were at 47 from a company medical in 2007 where WBC and Lymphocytes were only just outside limits. I had another blood test two months later in Venezuela and was told that it was probably nothing -maybe glandular fever - and not to worry about it...so I didn't.
In 2010 dec I had another medical, more abnormal bloods and a swollen spleen that was detectable (palpable) by the doctor along with many other swollen lymph nodes in neck, groin, and armpits, detectable by hand.
Jan 2011 I had a bone marrow biposy and CT scan which confirmed spleen and all the swollen lymph nodes including others in my chest and neck, which they hadn't previously found......today still W & W.
Thanks for your reply. I was diagnosed in March 2010 with MBL and progressed to CLL in late 2011, but like you had lmphocyte and WBC a little above normal for a few years before I was diagnosed. I am 58 and female and like you now have several swollen nodes. My platelet count has been in the low 100's for nearly two years, which has always made me nervous, but when I read your platelet count and saw you were still on W&W it made me feel a little better.
May we both be on W&W for a long time. I try to have a positive attitude and lead a normal life as much as possible.
Thanks for all of the responses. I was only diagnosed in March this year so am still very anxious. I am on watch and wait but have no relationship at all with my GP- my previous GP retired at end of April so feel that I have to be my own specialist. Was told in May by replacement GP " You do not need to worry as your immune system will only be compromised after you have started chemo". This is why I am worried.
Good grief, where do you live? Consider getting to a good hospital with a cll specialist.
Absolutely agree Mark! That statement by the GP would worry me greatly. Never mind professional sensibilities Elizabetha, ask for a referral to at the very least, a good haemotologist and preferably a CLL specialist.
Newdawn x
I further agree, GPs know little about CLL from my experience. Cancer patients get 'slotted' to oncologists, but for CLL we are best served by a haematologist or haematologist/oncologist.
Finding a doctor who treats a large number of CLL or perhaps leukaemia and lymphoma patients, in a large university research and teaching hospital would be the very best choice...
If you give your location there may be a CLL specialist close to you, although they tend to be in larger cities... perhaps others can offer recommendations..
~chris
My gp referred me to an oncologist. She checked my platelets and they were in the 100's. She said I was cured. I left thinking she didn't know much about CLL.
There are many of them out there unfortunately 😱😕😬
Thank you for reassuring me that I am not paranoid. I have requested an appointment with consultant at hospital to discuss my case and will be changing GP practice right away.
Excellent move Elizabetha,
The Australian Leukaemia Foundation recently worked out that the average GP would see on average about 6 or 7 lymphoma patients in their career. That's patients with all types of lymphoma of which SLL/CLL is just one. On that basis, becoming your own 'specialist' is definitely a wise move and this community can certainly help you there.
I and I am sure many others in this community would love to be in the situation of not having our immunity affected by this condition until after treatment, per your erstwhile GP's comment. Unfortunately SLL/CLL is well described as a cancer of the immune system, which treatment can exacerbate - which is probably the major factor justifying the watch and wait approach. Your immunity may well be fine now and for many years to come and you may only need treatment, if at all when kinder treatments become available. Checking your immunity is one of the questions your haematologist consultant should answer for you by checking your immunoglobulin (antibody) levels. It would also be prudent to get all your non-live vaccines up to date as the ability to generate a good response to vaccinations decreases with progression of CLL.
Should you find your immunity is under par, there's plenty of advice on this site on how to reduce your risk of infection.
Let us know how your consult goes!
Neil
Hi yes agree that the best way forward is to get an appointment with a CLL specialist. Also I too changed GP after CLL and I'm glad I did. You do have to consider the area you live in ( I live in the greater London area so am spoilt for choice). Best of luck.
I'm so glad that you are changing doctors, and are looking for a consult! My Ig levels were all well below normal before treatment. My first treatment was IVIG to boost my IgG , which was in the low 200s. Your former GP must have missed the lecture about Ig levels.
Pat
Thanks again for the advice and support. Had telephone consult with the "better" GP in my practice and again was advised that I have nothing to worry about and that my tiredness may be down to the time of year! I live in Glasgow, Scotland so if there is anyone out there who could recommend a GP practice with CLL expertise please let me know.
Your tiredness may be due to the time of year or many other things not related to CLL. However, if you search for 'fatigue' on this or other CLL sites, you will find that fatigue is a commonly reported problem - even in early stages. The reasons aren't understood and unfortunately complaints of fatigue are often quickly dismissed as not related to CLL and nothing to be concerned about by the medical profession.
I'd recommend you have your vitamin D levels checked to see if you need to take a vitamin D3 supplement. Vitamin D levels can be lower than normal if you have CLL and I doubt you get much sun in Glasgow even at this time of the year! Boosting your exercise can also help. This has made a big difference to my quality of life and many others. Do site searches for both exercise and vitamin D so you can learn from our collective experience.
Neil
Hi Neil,
Checked this out and been taking D3 since your suggestion,feel much better. Had 10 days break from work, some sunshine and no access to work emails so reassured to see that my fatigue has reduced. GP tested blood for underactive thyroid and diabetes but pleased to note that there are no indications of anything other than CLL. Would suggest that others try vit D3. Thanks again.
Hi Elizabetha,
I'm happy this worked out for you so quickly - thanks for letting us all know. Hope it lasts when you go back to work - the real test!
Neil
wow, everyone has so much info and experience to offer ! I'm thankful I found this site and wish each and everyone of you the best news all the time !! My IgG is within normal range but my IgM is below normal. Does the IgM have much to do with anything?
I'm pretty sure your doctor would tell you if it's an issue. At one point I had to be hospitalized because I only had 7.
Just passed my 20th year with CLL. My current platelets are 30 and the good news is that have not been above 100 in 11 years. The 10 sessions of chemo, primarily Rituxin, over the 11 years I am sure did not help. At 79 the good news is that I feel fine with no other serious illness.
A Reminder of the Symptoms of Shingles including the pre Rash phase. 
Free speech - a clarification
Ordered my Home PCR Test to access new treatments (Sotrovimab and Molnupiravir)
Skin problems at the end of a clinical trial
