Hi was wondering if anyone has had same sypmtoms that i am goin through.been seeing doc for last 18mths as wbc has been raised

This last month i have had 4 fbc tests done all staying at 15 only symptom was feeling really tired,but last few months not been really hungary i have noticed that i have red pin prick spots on my arms and chest few on legs.i am currently on antibiotics to be on safe side to get another fbc next wk.im getting referred to see a haemotoligist starting to get worried now any help would be great..also sweating really bad during the day to point it dripping of me also night sweating waking up with my hair soaked.

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13 Replies

  • I'm glad you are being referred to a haematologist, the red spots might be Petechia. If you are taking fish oil capsules, try stopping them...

  • thank's for replying no im not taking any fish oil.i'm at the stage now that i will be happy to finally find out what is going on esp bein tested for so many things like rheumatoid arthritis thyroid all coming back negative.

  • The symptoms you list are classic CLL symptoms and the fact that your WBC is "only" 15 is not unusual. As suggested, you need a hematologist (or haematologist in UK spelling). A hem/oncologist (specialist in blood cancers) and even a CLL specialist is strongly recommended, as our disease is rare, even the doctors are uninformed about treatments and diagnosing the type of symptoms you have.

    The numerous blood tests in one month is unusual, I hope one of them was flow cytometry- (http://en.wikipedia.org/wiki/Flow_cytometry ) a diagnostic test to identify exactly which flavor of Leukemia or Lymphoma you have. If CLL is confirmed and since your symptoms are getting worse, your hem/onc may also decide to run a FISH test ( en.wikipedia.org/wiki/Fluor... ) to begin choosing possible treatments for you.

    There are lots of online references and e-booklets your can read to understand CLL, its symptoms and treatments. Ask us if you can't find them.

  • THe symptoms you describe are very interesting including your WBC. I have had CLL these last eight years but none of your symptoms apply to me, however they do apply to my wife in each and every respect. I am not aware that CLL is contagious. After countless examinations by appropriate consultants it was concluded that the symptoms were due to certain drugs that she was taking, Amtrypteline, Prucalapride, clonazopam and a host of others but more importantly severe anxiety and depression.

    I am wondering if any of this applies to you.

  • Hi berrytog just seen post.no its not contagious.i was on amtrypteline for a yr as been told i have arthritis in back these can cause sweats though i had sweats before i went on them thought it might have been the menapause as i had a hysterectomy 7yrs ago but hormones were fine..doc kept sayin it was tablets but i forced myself offthese tablets as ive heard to many stories at how bad they are can chance ur mood personality etc!! So been of them now for 6mths and still as bad..i would try and get your wife off these tablets.all i can say is tell her to go back to doc and maybe try different tablets and ask for tests..good luck

  • Hi lenkeck thank you for your reply will have a look at the links.every month for 18mths now i have had a fbc done mainly as wbc has been high doc was bein on safe side as 6yrs ago i had septiciama but had no sypmtoms only had a red knee so was surprised when doc send me upto hospital i got put onto antibiotic drip straight away was in for a wk.but this last month she has been getting me to get blood done once a week but lab red flagged my bloods this time which im glad as feel i would still be gettin bloods done but getting no where.its the sweating and being really tired that is getting me down anytime i see doc and mention a sypmtom its always put down to something else.my inflammation in blood had been up for months as well but last 2mths it has stayed down.its just a case of waiting now till i see someone hopefully wont be to long.

  • THere is even more common ground as my wife also had a hysterectomy ten years ago and has had some these problems since in particular the sweating and mood swings. Antidepressants can cause all sorts of problems but the amtrypteline in small doses is taken for nerve pain. I have spent £20K over the last two years on investigations and got nowhere so at the moment my faith in the medical profession leaves a lot to be desired.

  • Hi berrytog i would def think about the tablets i was on 150mg taken at night. i was referred to pain clinic doc there wasnt happy said that they werent good for me and to get off them asquickly as i cld though u cant just stop them need to gradually do it he ended up giving me a 3wk course of pain injections in bottom of spine and have been great.there is another tablet you can take that is better and has none of the bad side affects though many docs dont give out as they are expensive i will find out name for you and get back to you.i have been same loosing faith as keep getting told that nothing is wrong just have high wbc but i know my own body and know something not right plus im only 37 no way its right to be this tired but im hopeful that in finally getting somewhere.i would keep going back to doctor and stand your ground as we all know our own bodys and whats right and not right

  • It took me 5 years of pushing the issue, while two doctors wrote off my symptoms before I got my diagnosis. I almost lost my kidneys in the process. In retrospect, I would recommend seeing another doctor, and another one after that, if necessary, until you find one who pays attention to you. It was a cardiologist who looked at my labs and told me he thought I needed a Bone Marrow Biopsy and a new doctor and got both for me.


  • Hi pkenn thanks for replying.i have been feeling the same getting no where fast!!.im glad that the lab red flagged my results to get referred.ive been seen by the medical team they signed me off saying cldnt find anything wrong put it all down to having a bad back and tablets making me feel this way.i have now stopped tablets and still the same.my gp has taken my wbc every month always up with no sign of infection she asked to see me 3wks and checked me over and sent me for chest xray which at time thought was weird kept asking if i felt ok.hopefully im on the right road now and thanks to everyones comments i now know what to ask.

  • Definitely insist on Flow Cytometry! It would rule a lot of things in or out. People here can explain the numbers when you get the results. A basis CBC and Metabolic panel should also be done if your doctor isn't doing them.


  • Hi I was 50yr when diaginosed with CLL. Was told that my symptoms were not CLL and I tried HRT. It made no difference to tiredness or clammyness/sweating at night. I came off them when a gyno said if them made no difference to stop taking them and I always had the tablets so I could easily start taking them again. It made no difference. Stress does effect my CLL badly and i go to healing once a week to help with that. I would certainly try to get a second opinion from a CLL specialist.

  • Hi jangreen.im hoping to finally get to bottom of my illness.i never thought for 1 min it could be cll but everything is all slotting into place now just felt i was banging my head against a brickwall!! Nobody taking me serious always blaming it on something else.im just hoping i wont have to wait long to see heamotoligist.being constantly tired is driving me nuts!! Got nurse nxt wk i now know all questions to ask thanks to you all will keep you posted...good luck to you all x

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