New here - just wanted to say hi and share my story

Hi to everyone here! I am a member of a canadian thalassemia forum but found this through google and thought I would drop in. I am 33 and mother to 2 daughters and live in the UK. I have thal minor and have known about it since I was about 11. At the time I was given the usual information and told that it was asymptomatic. However the reason I had the blood test in the first place was to rule out rheumatoid arthritis as I was experiencing knee and wrist pain which was preventing me from playing the piano and PE at school. The arthritis was ruled out, thankfully, and put the lumps on my knees and wrists, which would flare up at different times, down to growing pains.

I was always a lethargic child since before I can remember and have always felt tired, a little depressed, often unmotivated, and a bit foggy. My blood count has been as low as 6, at which point my haematologist prescribed folic acid and 200mg of ferrous sulphate 3 times a day, but when my iron count failed to go up significantly I was investigated for coeliacs disease to see if that was the reason my body wasn't absorbing the iron. Not surprisingly I don't have coeliacs or any other food intolerances or allergies. I nearly always cook from scratch and eat a well balanced diet which includes meat.

I haven't seen my haematologist for about 5 years as we moved but he seemed to think that it was fine for me to be on 600mgs of iron a day forever more, however I didn't continue with this as I didn't feel it was really helping and had my own concerns about iron overload, especially as I then fell pregnant. Since then I have had 2 daughters and the lowest my blood count has been is 7.

More recently I have started to feel rubbish again and will have a blood test on Monday to check my levels. I will then see if I can be referred to a haematologist as I'm really feeling at the end of my tether with all this. I find the biggest issue I find is that doctors and even hematologists just do not accept that thal minors do experience symptoms. Yet when I come on to these forums and read accounts from other thal minors, we all seem to have similar symptoms and have been pushed down the same routes in order to explain our problems - yet the one thing we do know we have is ignored!!!

I wanted to share my story with you as I feel it's important that as many thal minors as possible can contribute their experiences, just to provide support to others and to reassure us that we're not hypochodriacs and we do experience real symptoms as a result of our genetic blood make up.

Hi Nadia and welcome,

Are you sure you're not intermedia? Hb levels of 6 and 7 would indicate intermedia. Are your Hb levels normally higher than what you mentioned here? I think you are right in not taking iron. Unless iron studies show you are truly deficient, it's just a bad idea to take more iron, especially since you strive for a balanced diet and most likely have enough iron already.

Hi Andy, to be honest I really don't know regarding the intermedia possibility. I was first told about the thal minor more than 20 years ago now. My father was Arab, (mother english), and I grew up in an area with few ethnic minorities so I'm guessing I was quite a rarity to actually have it. Since then I have been met with indifference regarding the thal minor in the sense that is largely ignored but lots of other things have been suggested to explain my low levels, such as the coeliacs etc.

I'm very interested to find out what my results will be after my test on Monday and I will ask to be referred to a consultant. I now live in a more ethnically diverse area so I am hoping, (fingers crossed), that any consultant I see will be more familiar with the condition and open to discussing it.

Also, I don't really know very much about intermedia but I'll have a look on this site.

 

Hi Nadia,

If the Hb in the 6-7 range is not your normal Hb and your normal Hb is more than 9, you are most likely minor. With your background, it is unlikely that you would have two thal genes, so that would reduce the likelihood of intermedia. If you can, let me know what your test results are once you receive them.

 

Nadia,
I hope you find the answers to your worries and  meet with our wonderful group .
Kathy

 
   Nadia to ThalPal   

welocome nadia to the Thal community ...
I Hope you will find Answers of all of your Question here ...
dont hesitate to ask anything  ... feel free to ask anything about thalassemia ...
Keep posting here  ...

take care

I will post my results when I get them. Whilst I'm feeling very tired at the moment, I would be surprised if my count was as low as it has been in the past and having read more about Intermedia I don't think I fall into that category.

I have however just read about the 'chipmunk face' and funnily enough I had a lot of othodontic treatment when I was younger as my top jaw protruded with gappy teeth, and from the side view my chin receeds a little. My top jaw still overhangs my lower teeth as they couldn't fully correct it. Probably just coincidence.

thanks for the welcome and I will post my results when I receive them.

Hi Andy,

I am new to this site and just wanted to respond to this Post , I  have the same problem I have been diagnosed with beta thal minor but for years my blood count ran between 6-9 and they made me take iron and it did not make a difference it just made me ill.  and now it has started to come up to normal range,  but now I have Diabetes,  which is controlled through my diet because I started eating everything wheat and raw sugar.

I also have problems with my spine and joints,  my cervical spine and my lumbar spine has degenerative disc disease this has also caused me to have sciatica needless to say I have chronic pain and have been reduced to only working 4 hours per day permanently. During an MRI they also found that my bone marrow had decreased my doctor told me this was due to the Thalassemia.  This disease also makes me test positive for the autoimmune diseases but further testing rules it out.  My question to you, could Beta Thalassemia minor cause  all of these problems or could I have intermedia?

I was born in 1955 and they did not know about this disease back then, I  inherited this disease from my mom that is what my doctors told me, she was only diagnosed with type 1 diabetes and low iron anemia  could it have just been thalassemia she died when I was 9 years of age at the age of 56.

Hi Twinn and welcome,

An Hb level of 6-9 would be considered intermedia, not minor. What is your Hb level now?

If your Hb level has been below 9 for significant periods of time, it would likely have a negative long term effect on your bones, because the bone marrow would be overactive which causes the bones to expand and weaken. A DNA analysis would confirm if you are indeed an intermedia. You should also have a group of blood tests called iron studies done. I am concerned about the possibility of iron overload from a combination of taking supplements and excess absorption of iron in your gut, as this commonly happens in low Hb situations. The body will often absorb up to 100 times the normal amount of iron from foods when there is a chronic low Hb condition. High iron stores could also be a factor in diabetes. You have had many tests but the DNA analysis and iron studies would answer many questions.

I find the biggest issue I find is that doctors and even hematologists just do not accept that thal minors do experience symptoms

They are really arrogant on that point. To be honest. I think there is still a lot of information missing about these blood diseases. It's so annyoing that they won't accept this.

Do you mean ferritin with iron count? In both cases you should let it check again. Also, try to find  (an other) hematologist.

Twinn, you should let your ferritin level check as well!

Hi Twinn ,
i m replying to this post to SAy Hello & to Thalpal , i hope you will find answers of your concerns , i hope you will this site as a big source of info on thalassemia and thals .. soo please dont hesitate and fee free to ask watever you wana know about . i hope you will find your answer within hours ...  soo, keep in-touch and keep posting, keep asking and keep busy to all site members ( but not me ) hahaha ....   best of luck ....

Best Regards
Take Care
Umair

Thank You,

i will see my doctor Monday and I will discuss this with him.