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Need your help/advice

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Old 12-13-2009, 10:21 AM   #1
Join Date: Dec 2009
Posts: 4
abussa HB User
Need your help/advice

Here is my background in the hope that someone can help with some advice.
I am a male in my late 30ís and I was on a medication that we later found has a leukemia connection.
In March of this year, I had some swollen lymph nodes in my neck. I was given antibiotics which did not help.
Then an Ultrasound confirmed swollen nodes and thyroid nodules. I was diagnosed with Hypothyroidism and put on medication.
In May a CT of neck confirmed a non specific swollen nodes, but none that are too large I guess.
In July noticed I am itching and I have back pain and stomach issues. My WBC came back high at 13.5 and I had a CT of chest/abdomen/pelvic which was normal.
In August after my white blood kept staying elevated and developed other symptoms like bone, muscle, and joint pain and weight loss, I went to hematologist who looked at my blood and said it is normal with only EOS slightly elevated.
In September I went to another hematologist who did a bone marrow biopsy which came back with slightly hypocellular marrow, but no blasts or abnormal cells. Since then my WBC has been in the upper range of normal and HGB, RBC, and HCT in the lower end of the range.
However, the following symptoms still persists: Fatigue, Flushing of skin, rashes, itching, pain in bones, muscles, joints, weakness, swollen behind the knees and some in the ankles. My uric acid is at 6 so may be Gout isdeveloping. I have swollen lymph nodes in neck. My temperature is starting to go up slightly that now it is in high 98 - low 99's. I feel dizzy sometimes and feel shaking in my hands.
I am at a loss of what is going on. Could this be Leukemia? I had the Bone Marrow biopsy back in early Sept. How accurate is the BMB in the case of leukemia? Any ideas on what to do next ?
Any help or advice would be greatly appreciated. I have a family and my symptoms are worrying me considerably.

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Old 12-14-2009, 04:07 AM   #2
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TopGeek HB UserTopGeek HB UserTopGeek HB UserTopGeek HB User
Re: Need your help/advice

If you had leukemia, it would have been evident to the haematologist so you should stop worrying about that possibility. The fact that the medication you were on had a leukemia connection means nothing. There are several medicines that can be used for different unconnected illnesses. The symptoms you describe are all rather general and can be due to conditions rather than diseases. For instance, itching can be due to fungal infections or to allergies to clothing or washing products. The aches and pains can be caused my mineral deficiencies, cold weather, unusual exercise, etc. The weight loss, unless it is dramatic, can be due to dietary changes, a change in the amount of exercise or simply to worrying about what illnesses you might have. Finally, all of those symptoms can be psychosomatic - if the doctors are telling you there is nothing wrong but you are convinced you are ill, the mind has a habit of creating symptoms to support your suspicions. The dilemma then becomes; who is right?
You have to have faith in your doctors. They have confirmed that you have a thyroid problem so presumably you have seen an endocrinologist. The thyroid is a notoriously difficult gland to control and it may take some time to find the right balance for your degree of hypothyroidism. Even endocrinologists often have difficulty in this field. Meanwhile, you could suffer some side effects so it would be best for you to discuss your symptoms with the endocrinologist to see if he/she can help.

Old 12-14-2009, 05:12 AM   #3
Join Date: Dec 2009
Posts: 4
abussa HB User
Re: Need your help/advice

Hello TopGeek,

Thank you so much for responding. I appreciate your opinion. I hope and pray you are right.

You are right in that any one of these symptoms by itself could be something else. What worries me is that all these symptoms started developing together just in the last 5-6 months.
BTW, the weight loss was dramatic more than 10%. However, in the last 3 months I have gained back most of the weight but I think it is due to water retaining or swelling.

I am just really scared and worried.

Thanks again for listening.

Old 12-28-2009, 08:07 PM   #4
Join Date: May 2009
Location: Atlanta, GA, USA
Posts: 51
ocelot HB User
Re: Need your help/advice


I would second a lot of what top geek has said but do think you might ask for a referral to a rheumatologist, as many of your symptoms can be early signs of inflammatory conditions. If your doctor has considered inflammatory conditions and performed appropriate blood tests, such as tests for various autoantibodies, this referral might not be necessary. Many of these symptoms can also be associated with low grade infections, so, while you're making the rounds (so to speak), an ID consult might be indicated (I say that having bounced among infectious disease doctors with very similar symptoms to those you have described for over a year before being correctly referred to a rheumatologist. Since then, over the last 21 years, it seems I have been developing set of hematologic symptoms which are now under evaluation by a hematologist).

Something that may tie many of your symptoms together could be a slight dysfunction of your lymphocytes. This is a common feature of many immune, autoimmune, infectious and hematologic disorders. A rheumatologist or immunologist may be most sensitive to these issues.

Based on my experience I would keep pushing until you find a physician in whom have a reasonable degree of confidence that he can articulate a basis for your symptoms and some reasonable form of treatment. With all respect to topgeek, psychosomatic illness has long been an overused term for symptoms the basis of which doctors haven't yet adequately investigated.

Old 12-29-2009, 01:22 PM   #5
Join Date: Dec 2009
Posts: 4
abussa HB User
Re: Need your help/advice

hello Ocelot,

Thanks for your reply. I am sorry you had to go through so much to finally get the right diagnosis.

WRT my situation, going to an Infectious disease does make sense at this point.

I have been to Rheumatologist and he ran Rheumato Factor + Uric Acid tests. I will go back and follow up with the him for sure. I have also been to an Allergist/Imunologist who actually ran quite a few tests CBC, ANA, Ferretin, Sed rate, and some others.

The problem i think is the follow through from the Dr's. Most Dr's will do the initial tests but then seem to lose interest once those come back negative. So, as patients we need to either keep pushing at the expense of being labled as Hypocondriacs or "it is all in his head" patient. Or find a Dr. who is willing to keep investigating and not give up after a few tests.

Thanks again and good luck,


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