Low platlets

[Shazz1958]

Hello...my husband husbands platlets have dropped from 132 to in 116 in a month..his GP refered him to a hemotoligist..this doctor looked at the report and said he will see him in 3 months non urgent...i was not happy with this and aired my concerns...they have now phoned back and said they will do a blood test next week to keep an eye on it...because of MY concerns..this sounds strange to me..should we be looking to get a referal to someone else? Thanks in advance

[AussieNeil Administrator]

Platelets are the hardest to measure accurately, because they naturally clump together. That's why it is particularly important to monitor trends, rather than become alarmed at an apparent drop that may well reverse next test. It is good that your concerns have been taken in account and your husband's platelets will be checked sooner, but perhaps you can now appreciate and be reassured that your husband's specialist is not all that concerned.

Neil

[Shazz1958 in reply to AussieNeil]

Thank you Neil...I am afraid that I am a half empty girl...though I do try to be a half full girl😊

[Cllcanada Top Poster CURE Hero in reply to Shazz1958]

You need to determine WHY plarelet counts are falling.. is it CLL bone marrow involvement or an autoimmune condition..

Further platelets like to hand out in an enlarged spleen, so the blood counts can be artificially low.

With CLL counts dropping below 100 usually triggets a pretreatment discussion, but usually treatments don't start until counts drop into the 80s.

Get it checked out as soon as possible byba hemetologist.. GPs and oncologists are poor choices.

~chris

[Cammie]

Yes I agree with Neil!

I’ve been in partial remission since 2015 and have visited my heamotologist every six months.

My January tests showed platelets down to 78 so to be on the safe side I was called back in six weeks.

The result platelets back up!

This happens to me from time to time.

My platelets always hover around the 100 mark with no problems and it is trends you should be looking at.

116 platelet count would be a good reading for me !

Your husbands consultant is obviously not concerned as mine would have similar outlooks even when drops occur. Should the drop continue treatments such as steroids or blood transfusions could be considered but at this stage I don’t believe you should worry too much especially as your concerns have been listened to and monitoring is taking place.

Geoff

[Shazz1958 in reply to Cammie]

Thanks Geoff..I feel better after yours and Neils replys...wish I found this site first instead of googling

[Cammie in reply to Shazz1958]

Shazz

Should be compulsory for all medics to point newly dx patients and their carerers to such support sites.

Glad you found us anyway.

[Jm954 Administrator]

Hi Shazz1958,

you don't say if your husband has a diagnosis of CLL. If he does then Neil is correct but if not you need to see a specialist asap.

[Mosaicgigi]

If your husband has been diagnosed with CLL and is not seeing CLL specialist, my first suggestion would be to see a specialist. I’ve been told by both my hematologist and CLL specialist that they don’t really get too concerned about platelets until they start dropping below the 100 mark consistently. Best to keep an eye on it though. Kudos to you for being an advocate!

[Dell49]

Hi Shazz

My last count was 19 but neutrophils are fine which is the one they really would be worried about , as long as he feels ok in his self he should be fine, but still good to monitor monthly at least until they steady.

[MsLockYourPosts Passed Volunteer]

Snazz - As JM pointed out, you don't say whether your husband has been diagnosed with CLL. I agree with her that if he has been this is probably just part of the roller coaster ride. Now is the time to start looking for a CLL specialist who you would be comfortable with long term. If not, I would be asking about possible reasons for the platelet drop if the count is still down when it is rechecked and how often it should be monitored moving forward.

[starsafta]

My platelets have lived between 117-126 through almost 4 years of treatment. While it takes longer to stop bleeding if I do something stupid while using a knife, I’ve learned to embrace the numbers, and my oncologist is unconcerned.

[hanskloss]

First, from what I know the critical threshold for platelets is around 50. Second, platelets lifespan is short and number fluctuate from one test to another. A single measurements, particularly in the range you describe, should not be a cause for alarm. It is a trend that is important so follow up testing would be perhaps in order.

I am in a similar range ever since my original FCR, although had individual tests going into high 90 range from time to time. These days back to 120-130 range and quite happy if it stays this way or goes higher.

[CAGIULIANO]

While on watch and wait my platelets were between 150 and 100 for 8 years

Now on my 3 cicle of treatment they are around 80.

No real consequence for the moment

[newyork8]

Ditto. The numbers move around. However if they steadily drop it may be a sign of bone marrow losing production ability. I've been below 100 and over 100. No problems re bleeding

[jettyguy1]

I am surprised that none of us mentioned that for some CLLers it would appear that diet and nutrition seem to impact platelets. The Platelets Disorder Support Association(USA Based) has a website and much is devoted to discussing what foods and supplements have been shown to impact platelet proliferation. They recommend several diets and the Macrobiotic diet has had the best results for either increasing or stabilizing platelets for their members. They also discuss foods, as well as other substances that interfere with the functionality of platelets. The PDSA has at least ten contributing medical experts that help shape their policies (they are primarily medically trained doctors and also some holistic trained healers who guide recommendations. Personally, I have seen my platelets become stabilized after switching to a macrobiotic diet; they had been diminishing steadily for a period of nine years, before I began my dietary regimen. I remain at the 120 level now for the last two years. I find that by including vitamin B-12,vitamin K,Vit-D,vit- A and folate rich foods in my diet that my platelet level seems to benefit. As importantly,I personally find that the functionality of my platelets seems to have improved along with my diet.

[Jm954 Administrator in reply to jettyguy1]

No one has mentioned diet and nutrition because there is no rigorous, controlled scientific evidence I'm afraid and none of the trials listed on the site you quote are looking at foods, diets or supplements.

The website you mention is mainly about ITP and we don't know the cause of her husband's low platelets so it's difficult to give any advice or opinion at all, they could have been low all his life. It could be ITP but it could be a host of other reasons including bone marrow failure and other platelet disorders (Glanzmann's, Bernard Soulier to name a few).

It's important to get specialist advice and a correct diagnosis before pursuing any complimentary therapies or diets.

[jettyguy1]

First there is plenty of anecdotal evidence that supports that certain foods impacts platelets. Secondly right on their website the PDSA explains that they are an advocacy group that also works with other platelets disorders besides ITP. I know because they worked with me, personally to help me and to guide me. They do their own surveys with their membership and they are guided by many medical doctors who consult with them,listed right on their website. So it is incorrect to imply that the PDSA does not offer advice about other platelets disorders. They absolutely do and they say so, right on their "ABOUT US" page. And frankly they most certainly are looking at foods and the platelets connection---they devote quite a few pages of their website to describing what foods can influence platelet proliferation,what foods to avoid and what foods may actually contribute to platelet dysfunction. And if you do your due diligence and actually read their website you'll see that they have surveyed their membership and that they recommend several diets based on their membership reporting good results including improved platelets counts stabilizing and functioning better. Obviously people should ask their CLL specialists about dietary protocols. I asked mine and they loved the results. And there is plenty of evidence that indicates that B-12,vitamin K,vitamin A and folate foods can influence platelets. For anyone to suggest otherwise, would be wrong. But just as importantly--I'll take the advice and the guidance derived from people who suffer from various platelets disorders including CLL -- who have had to experiment with their diet to get actual results, mainly because medical researchers have not YET spent enough effort to follow most nutritional regimens as aggressively as they could--- yet these CLLers have reported good results with stabilizing platelets due to changing their diet or by supplementing. Just because something isn't methodically medically studied or adequately medically researched, does not mean that it hasn't been holistically studied or studied by other healing modes and found to be somewhat effective. On the CLL support Facebook forum, one of the administrators there, dramatically increased and stabilized his platelets by supplementing with a sesame oil supplement. After nine years of diminishing platelets, as soon as I started adding key foods that some have found to increase platelets, my platelets stabilized and have remained higher than ever before in recent history. So I would think that there is a subset of CLLers on this forum who could possibly benefit by considering making changes to their diet. And why would all the "medical doctors" featured on the PDSA website who are listed as advisers, lend credence to a group that advocated both medical and nutritional protocols, if they weren't behind the notion of an integrative effort being helpful? There are a percentage of CLLers on HEALTH UNLOCKED who may benefit from the regimens depicted on the PDSA website. I hope they go to it and possibly pick up some helpful suggestions. For information about scores of other types of Platelet disorders other than ITP,which may include some interesting information for CLLers as well..just google OTHER PLATELETS DISORDERS, PLATELET DISORDER SUPPORT ASSOCIATION.

[Shazz1958 in reply to jettyguy1]

thank you everybody for you imput...Andrew has his blood test tomorrow...will post the results...you have all been wonderful...yes I do believe I was lucky to find this site

[Loriliveswell]

Find out if the platelet testing includes hand counting if results change suddenly. My Dr. at Johns Hopkins said that what looks like asudden drop may be a clumping together that the machine counts don't pick up. Just make sure of both count methods are in play.

Knowledge is power but hope goes a long way!...and prayer that all is well!