Hi! I have to agree with all the new members in saying that this is an amazing site. I have found much needed information and help in the few hours that I have spend on this site!
I have to apologize in advance. I may ramble. I may give a lot of unnecessary information but I am pretty known for giving too little information and not being able to get reliable help based on insufficient information. It may seem as if I am a hypochondriac. but these are real issues that I am having and just looking to find answers, parallels, etc.
That being said, a little background about me. I was diagnosed with thal minor when I was a baby. I was born in India and by 6 months old, I started developing severe symptoms and had to be brought to America for treatment by the age of 10 months to have any hopes of getting better. Throughout my life (I am 27 now) I have been susceptible to many different illnesses and my mom has always been over cautious and paranoid with me. I could never even gain a pound and that really worried her.
When I was 18, I was diagnosed with hypo-thyroid. I had a significant upshot in my weight as well as minor depression, hair loss, even more fatigue than usual, even more aches and pains and shortness of breath than usual. I have been taking levothyroxine since with my dose increasing every year. I was taking folic acid in the past for thal minor but the combination of the levo and the folic acid was making my hair fall out so I stopped with the folic. My hemoglobin levels were pretty steady at around 10.7 for a while. I just got tested and my levels have fallen to 9.
I also have always had pain in my joints. I have gotten numerous tests done to figure out what the problem is but no carpal tunnel or arthritis (the usual culprits). My back is constantly tense and hurting (I can get a professional massage for over an hour but 15 min after I leave, I feel the same, all tense and achy). One doctor has told me all my pain is from being double jointed (I quickly stopped seeing him) and another said that I will have to try trigger point injections for my back. Reason being that my muscles in my back constantly think that they are injured and lay down scar tissue on top of each other and over time it hardens my back and muscles. (I'm sure that I probably am not describing it correctly but that's the basic idea of the 'condition'.)
Also, I have a wine stained birthmark covering my entire left arm. There are no complications there, just discomfort and excessive sensitivity to cold on that arm. Probably irrelevant but feel as if I need to give my entire history just for a good idea of what is going on with me and if my symptoms can be something else NOT related to thal minor.
Recently, I have developed chondromalacia patella (knee caps won't stay on track and is wearing away the cartilage underneath) as well as excessive back pain to the point where it is tender to the touch. I also am just under extreme stress in my personal life that is affecting my diet, sleeping habits, etc. I have had a severe case of insomnia for the past year and a half (go through phases every year or so but this is the longest).
Symptoms other than what I have already listed: extreme fatique, forgetfulness, lethargic, depression, short tempered, achy all the time, headaches, nose bleeds (last week had 4), etc.
I'm really sorry if all of that was too much information and a lot of unnecessary but I don't know what could be potentially telling to what is going on with me or not and what is due to thal minor and what is not.
I am going to go a hematologists for the first time soon and I am (surprisingly) not sure if I am alpha or beta.
I guess I haven't been very clear on what I am looking for. Sorry! I just wanted to know, given everything that is going on with me, what do you guys think is due to thal minor and what isn't? My PCP is an old family friend and I have been going to him for a long time so he is very quick to push aside 'little' symptoms as nothing. I am definitely changing to a different doctor but in the meantime I was looking for some help and support.
Thank you all in advance!
