Untreated Thal Minor in the UK. Just had hip surgey

My aplogies in advance for the long post. My story goes back 32 years. I am in the UK , born in 1981. I was diagnosed with Beta Thalasseima trait (minor) in 2005, by accident, after having some blood tests due to me feeling constantly tired. I presumed it would show I was anaemic, as I was anaemic as a child (1980’s) . I was a sickly child, I had constant tonsillitis and was underweight. They could not really find out what was wrong with me. I have distinct memories of hospital tests such as Sweat Patch tests, and blood tests (which involved being held down by 2 nurses), being weighed, and then at home I have distinct memories of being given liquid iron supplement for anaemia – and then liquid paraffin for constipation. I took iron tablets until my early teens, after this point I refused to take them as  I believed that were giving me IBS – funnily enough my IBS disappeared after I stopped the iron.
I have always felt fatigued, but I have pushed through it and managed to be pretty active, healthy outdoorsey person. Though I have felt that the tiredness I feel is not right.
In my early twenties I began to have symptoms of endometriosis, which was why I went to the GP with my tiredness, I presumed it was to do with the endometriosis. She did blood which showed anaemia, but also an extra test which showed the BTM. This was 2005. I was told it was asymptomatic but to be sure that I was not given iron tablets. I had minor surgery for my endometriosis and it has been under control since then. Around that time I also began to have a bad back.

Fast forward to 2013 and it has taken this long to get a diagnosis for my back. Turns out I actually have a problem with my hips called Femoral – acetabular impingement (FAI) I have suffered chronic pain and fatigue until I had surgery on the 2nd Dec 2013 on my right hip. I had open surgery in which they dislocated my hip joint, reshaped the ball of the femur, trimmed some acetablum and removed my labrum which had completely calcified. I am 5 weeks post op and non weight bearing on crutches for another 2 o 3 weeks. My back pain has gone.

So whilst I was having surgery, my surgeon found that my blood “pooled” a lot in the surgical site and he used a lot of swabs. He also had to place a would drain which he says is unusual for this type of surgey.  On 2 days post op I was to get up with walking frame etc, however I couldn’t make it . I was just sooo tired, every time a stood I go really hot,  my head would spin and I would feel faint. When I did make it to the toilet I was physically shivering with the effort by the time I returned to bed. I made it out in the corridor on day 3 and passed out, I was not well. I had a blood test which showed I had a Haemoglobin (Hgb?) of 7. Due to my BTM, they decided to give me a blood transfusion.
Following the blood transfusion I was able to make progress with my crutches and get home. They had wanted to retest my HgB but my veins would just not play ball and they were unable to get a sample.

So this experience got be thinking about if BTM is symptomatic after all. And I started  researching and came across this site.
So my symptoms all these years have been
1)   Tiredness/fatigue
2)   Tendency to feel faint/go light headed in hot places/when under stress
3)   Occasional Panic attacks
4)   Anxiety/depression (I have been on citalopram for 8 years)
5)   Dizzy when I stand up
6)   Low blood pressure

During  and post hip operation:
1)   Pooling of blood in surgical site
2)   Need for a would drain
3)   Low blood pressure
4)   Extreme fatigue, unable to get to the toilet with out assistance
5)   Shivering with tiredness
6)   Temperature peaks
7)   Low HgB so given blood transfusion.
8)   Once home
1)   Fatigue
2)   I can feel my heart beating in my chest
3)   Dizzy when stand up

I am in the UK and I cannot find any UK info on BTM that says its should be as symptomatic as many people on this forum report. So wondering where I go now. Is it worth getting my GP to refer me to a haematologist to look into this properly, considering my diagnosis was 9 years ago and hasn’t been reviewed since.
Should I start taking folic acid to see if it helps with my energy levels now?  I know my body is under stress at the moment recovering from surgery.
I am sorry that this is such a long post. Thank you for reading if you got this far.

It's amazing that it took so long to diagnose, as beta thal minor is usually evident from a complete blood count. A hemoglobin electrophoresis is then used to verify the diagnosis. Iron should never have been given, especially long term, as it can slowly build to harmful levels.

Yes, folic acid should be taken, as it is required to build red blood cells and thal minors have a higher than normal turnover of RBC's. I would also suggest that you look at the thread at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774 to get some more tips about which supplements may be of value. I would strongly recommend that you get tested for your vitamin D level, as many of the symptoms you mention can be related to D deficiency, which is the most common nutrient deficiency on earth. Your level needs to be at least 30, with 50 being an optimal level. I can not stress this enough, as vitamin D deficiency exacerbates almost all of the problems found in thal minors.

Thank you very much for reply Andy, it is much appreciated. I guess I should be getting my GP to refer me to a  haematologist as she seemed to know very little about it and I felt like I was telling her about it!

I think I will start taking some folic acid and B vits straightaway to try and help my post op fatigue

Do you know anybody on this forum that is the UK?