Secondary Complications - Thalforum

Chadwyck · August 27th, 2008, 02:31 PM

Hello forum.

Just out of curiosity, can anyone either major, intermediate or minor give some quick advice? What secondary complications should I look out for that are not quite obvious with thalassemia? IE: joint pain, headaches, etc.

I just lost my voice at work on top of my left eye won't stop watering. I'm trying to do a process of elimination before I go to see my doctor for my next hemoglobin level check.

Chadwyck

Neel_R · August 29th, 2008, 12:58 PM

Joint Paid, mostly knees, has always been an issue when I get close to my transfusion date. Back pain, lower then rising to my head, quite painful in the mornings closer to my transfusion date. Thats pretty much it for me. I do get headaches once in a while, but I think that is due to being at work ;)

Chadwyck · August 29th, 2008, 02:23 PM

Thank you Neel R. I just saw my doctor today and again, he gave me a dose of "don't worry about it". LOL I've been getting that all my life and I should be used to that comment by now. I do get lots of back pain, tiredness and lightheaded but according to the doctor, there's nothing wrong. I can imagine what I'd be faced with if it was really something!

Neel_R · September 2nd, 2008, 10:44 AM

Ya I hear you, you never really know though what is happening in the background. For instance I have tons of back pain but I also have Ankylosing Spondylitis, so that attributes to the back pain.

Are you just seeing a General Practitioner? If so, maybe try to see a physiotherapist or chiropractor.

Chadwyck · September 2nd, 2008, 01:38 PM

Well, I went to the doctor and there are lumps that needs to be taken care of. I have an appointment to get them removed. There is a slight chance they can be malignant or benign. I'm being optimistic here cause I eat properly and get lots of exercise. However, I have heard from thal majors that part of the ongoing agony is that thalassemia in all severity stages can start triggering other illnesses later in life. I hope it's just a hit or miss situation but at least I'm being looked after. Thanks for your assistance. I still get the joint & back pains but these lumps are new to me.

Dominick G · September 3rd, 2008, 04:40 PM

Chadwyck, I have Thal-intermediate and several years ago the Doctors found a very large quanity of lumps through out my body, after 2 weeks of testing and than finally explorortory surgery, i found out that the lumps are caused from our bone marrow. I was told by Dr's in California that our bone marrow works very hard trying to keep up . When we get older, the bone marow will start producing defective cells, these cells will join together and give the impression od canceriuos cells. all the lumps i had were, thank God, benign.This could be want is going on with you. Good luck.

Schelby · September 4th, 2008, 06:00 AM

I have a strange mass of what I have been told is bone marrow tissue outside of my bones and in my body cavity sort of between my spine and lungs. I was also told that has shrunk since I started regular transfusion therapy. I have read this is common with Thal Intermedia. I also had a mass of something near my stomach found on an MRI. They did an endoscopy because they thought it was stomach cancer. It turns out is was not inside my stomach, but outside. My hematologist decided it was a mass of swollen lymph nodes and it was because of the Thal. He didn't feel it was anything to worry about. I feel I should be worried about a doctor that isn't worried about a mass of swollen lymph nodes.

I had a recent chest xray to rule out pneumonia when I wasn't feeling well last week and they didn't say anything about the lymph node mass. Maybe it shrunk or went back to normal. Of course they FREAKED out about the bone marrow mass and kept me in the ER for NINE hours.

THANKFULLY I have an appointment today with a group of Thalassemia specialists I found in my area. I am SO TIRED of doctors scaring me about things that are fine and not treating things that need attention.

As far as pain, I have advanced osteoarthritis in my left hip. It is actually bone on bone, so obviously that hurts. in the past I have had pain in my feet and hands. When I was younger I had a lot of knee pain, but that got better. My back gets more tired feeling than actually painful. Laying down flat on my back for a few minutes helps. I have notice dull headaches that never seem to go away when my Hb is way too low. My elbows and shoulders act up sometimes too, but it is usually just a day or two before it goes away.

My daughter has Thal Minor. She has complained about being lightheaded in the past. I asked her about it the other day and she said she still feel this way often but she is used to it and it doesn't bother her anymore. No pain as far as I know. She did have a fainting spell once after getting up too fast, but I think part of that is that she doesn't eat properly (she's a vegetarian) and she doesn't keep hydrated enough. I have stressed to her that hydration (and a balanced diet) is very important, but she is a stubborn 15 year old. What to do? :)

Chadwyck · September 12th, 2008, 12:47 AM

Well I went to my doctor for something new. I found lumps on my body, thinking it could be anything. Apparently, I didn't know that I could get more infections than a person without thalassemia. There must have been a virus going around at work and I was the only one that got sick. A lot of supervisors think I just love to complain, but then again, they don't have a clue what thalassmia is. Sometimes they can't even say it properly, yet alone knowing what it is.

As for my hemoglobin level... I have no idea what it is now since I last checked. Every time I go to see my doctor about something I ask him to check my blood for my hemoglobin level, iron level, etc. and he keeps refusing to do it. I guess with the amount of patients that go in and out of the place... I should walk in with a bullet lodged in my leg to make it worth his time. LOL I'm just tired of it all.

Schelby · September 12th, 2008, 01:05 AM

Quote:

Originally Posted by Chadwyck

As for my hemoglobin level... I have no idea what it is now since I last checked. Every time I go to see my doctor about something I ask him to check my blood for my hemoglobin level, iron level, etc. and he keeps refusing to do it. I guess with the amount of patients that go in and out of the place... I should walk in with a bullet lodged in my leg to make it worth his time. LOL I'm just tired of it all.

You need a new doctor. You have a condition that can cause you to be anemic and he won't check your hemoglobin or iron? DUMP HIM.

I so hate egotistical doctors. Yes, they may be doctors, but that doesn't mean they know EVERYTHING. There's a reason why they call it a "Medical PRACTICE".

sunny1313 · September 13th, 2008, 06:56 AM

Hi Chadwyck!

( Schelby is absolutely right! )

I can totally understand what you must feel! I have been to a million doctors for about 20 years before it hit someone that i maybe thalassemic. All because my reports were for some reason - borderline.

It might be a good idea to try to find a new doctor who actually has the patience to listen to you and feel what you are saying. And then accordingly help you out in the best possible way.

I do think once u get older all sortsa problems come up so you need to also figure out what works best for you.

My body aches/backaches/neckaches/migraines have finally been helped by an unexpected visit to a new physiotherapist. And some more simple stretches i picked up off the net!!!

The other thing i have experienced is - i needed a doctor who doesnt just specialise in one field but is 'atleast' knowledgeable about the entire body upto a satisfactory level.

Otherwise what happens is we will be looking for all sortsa specialists all our life - for each and every single issue that comes up! I did that for a long time and it didnt help me much.

At times i look beyond the obvious and simply figure out what helps me. Since i am often tired, superheated and in pain, i realised that burning less calories helps the body in a big way. I am already underweight, but even then it never stuck me to slow down my routine till my doc mentioned it.

For me it is worth the compromise if it means i can be less in pain!

And i said this elsewhere too .. it is better to focus on preventives also ... to atleast not let things get worse than they already are! Once some damage is done it gets harder to reverse it.

Do take care and stay well!

Chadwyck · October 14th, 2008, 07:00 PM

Thank you! Another thing that's been happening to me lately is vision problems. I'm just assuming that this is just based on the fact that I'm older and not thalassemia. Then again, because of so many issues, anything is possible. I'm gonig to get my eyes checked soon anyway.

kiki · October 21st, 2008, 02:24 PM

Hello,

I am thal minor...I never really had symptoms due to my condition until 2 yrs ago. That is when I had fainting/shaking episodes, as well as issues with my vision (increase in floaters), and a general increase in anxiety. I originally attributed my new symptoms to just getting older and having thal minor....BUT now I feel that I've made some headway as to what has caused my symptoms. 2 yrs ago I took an antibiotic for a general cold....my new symptoms started one week after i took the antibiotic. This antibiotic is called cipro and it's a fluoroquinolone...these are very strong antibiotics (used for stuff such as anthrax poisoning!) and all my new symptoms point to this drug. So, have you taken any antibiotics, around the time your symptoms began? Just something to consider. Good luck.

Schelby · October 21st, 2008, 04:10 PM

Good point. I had a very severe reaction to a flu vaccine and everything got worse for me after that. My allergies to other things became very sensitive. I guess these things are never considered.

Pear · October 21st, 2008, 05:16 PM

Kiki, I experiences also 'floaters'. My eyes were already bad. I have since i can remember glasses.I dont know that antibiotics. I always have amoxiciline (spelled right?). I hate it! Those pills are so big; suffocate.
Schelby, you are the second person of today we had a severe reaction to a flu vaccine. The other person believes it's from the iron, but I am not sure. My new gp lost his papers by his movement to a new building, i think. I still haven't heard anything of him... Flu vaccine really helps.

kiki · October 21st, 2008, 07:18 PM

i have just recently put two and two together and just know this is the cause of my problems. Perhaps it is something to consider for other thal patients (especially since our body systems may be weaker in general against such things)...this is just wikipedia info on these antibiotics, but a good starting point if anyone is interested in learning more:
http://en.wikipedia.org/wiki/Quinolone

you will notice that it lists various (some severe) side effects; furthermore, the FDA in 2004 put a black box warning (their most serious warning) about how these antibiotics can lead to tendonitis and/or tendon rupture.

Here is the FDA website:
http://www.fda.gov/cder/drug/infopag...es/default.htm