CLL Support Association
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Introductions

Hi All, I was diagnosed with CLL Oct 2016, age 44, with a Lymphocyte count of 106. A bit of a shock at the time but now a year on I am learning to live with it whilst on W & W. At the time all the other blood counts were fine and no major swelling of nodes or spleen. I have been really impressed with everyone on this site, such an amazing community full of brave warm and generous people. Its also been a great source of information to help me understand the CLL better and I only came across when researching green tea after my consultant suggested it when I asked if there was anything else I could do apart from being as healthy as possible.

I have just had a consultation and my Lymphocytes have jumped from 113 to 161 which was a shock, though all other counts remain within normal range and the consultant couldn't feel any swelling that should be of concern with nodes and spleen. For now he says not to worry and we will see potentially what's happening in January with my next consultation and an ultrasound.

He did mention to me that my thyroid is having to work very hard and may need help in future. At the time I didn't ask about it further as my Dad and Sister have thyroid problems and my Brother is borderline. But I wondered if anyone knows if the thyroid is affected by CLL or if there is anything I should be mindful of?

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The thyroid is a regulator of all body systems.

If by "working too hard", your Dr. is suggesting hyperthyroid, if I were you, I would see an endocrinologist to have a thyroid test. Especially, with your family history re: thyroid issues, please seek to get it looked at.

(I was diagnosed with Graves Disease many years before I was diagnosed with CLL--Graves Disease is an autoimmune disease.)

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I agree with cllady01.

I had the same experience of being diagnosed with Graves years before CLL. Fortunately it went into remission after a year on PTU and stayed there. I still have regular monitoring of both T3 & T4 to keep an eye on it.

I had a negative biopsy on an enlarged node just before I began CLL treatment, but the CLL hasn't seemed to have much effect so far, knock wood.

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Thank you for your advice, I will certainly look into that with my GP.

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Hi Calvin and a warm welcome to you. I’m glad you’ve been finding the site informative and supportive. Whilst your ALC has jumped a bit, the numbers are not the only factor all other things being equal and with other counts in normal range, that’s a very good sign. With no palpable nodes and the spleen not noticeably affected, you could be carrying most of your tumour burden in the peripheral blood which is why your ALC will be increasing. I’m largely in the same position although my spleen is slightly enlarged. Obviously without scans, it’s impossible to know internal involvement but things sound quite stable for you presently.

You obviously have a familial history of thyroid problems and it’s amazing how many CLL’ers mention thyroid and auto-immune connections. However, I have no personal experience of this so will leave it to those similarly affected to advise and share experiences with you. Good to hear your Consultant is on the ball though.

This link may help a little;

patientpower.info/how-does-...

Glad to have you with us and let us know how things progress.

Just on an administrative issue, I’m not sure if you’ve used your own name Calvin but if you have, please consider restricting your post to the community. It means that this and all the responses don’t find their way onto the internet. You’ll see the option when you post an original thread (not for replying to others), and by ticking the ‘only followers of this community’ it restricts it and the little padlock appears on your post.

I can do it for you if it’s a problem.

Warm regards,

Newdawn

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Hi Newdawn, thank you for your warm welcome and encouraging words. It’s funny really I have read many times on this site that it’s important to consider the overall picture, but as soon as you get a number that doesn’t fit your hopes the mind wonders.

I do wonder though having read another post that it’s the green tea and ECGC I have been taking since the last test that has aggravated it (or as I think in my mind, poked the beast!).

I am a low CD38 expression (1%) and deletion of one copy of the chromosome 13 (13q14) with no evidence of ATM TP53 or Trisomy 12 deletions, which as I understand is generally a good prognosis.

In the meantime I will keeping being positive which helps me make the most of everyday.

I will make the post private to the community, thank you for your advice.

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How to make your post private is covered in this post: healthunlocked.com/cllsuppo...

You can also change your username for greater anonymity, unless you've joined via Facebook or Google+, in which case you can better maintain your privacy by joining this community anew.

Let us know by a reply if you need assistance.

Neil

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I was diagnosed 5 years ago and like you my WBC has climbed to 160 without any other symptoms- yet! I also have a sister and 2 nieces with thyroid and allergy problems .

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