Does anyone know anything about thelemassa don't think I've spelt that right.

[1whitestar]

Does anyone know about thalassemia don't think I've spelt that right.

[Dizzytwo Moderator]

Hi there, did you mean thalamus? Never heard of it before to be honest I had to look it up. May I ask why you are interested in this. Just out of curiosity xx

Momo

[1whitestar in reply to Dizzytwo]

Its thalassemia, its a condition to do with the red blood cells . Just wondered if there any connection with fibromyalgia.

[Blue-52]

did you mean this

Helpful

[Dizzytwo Moderator in reply to Blue-52]

Morning Blue, yours sounds better than mine lol But I think between us we covered the whole body 🤣

[Blue-52 in reply to Dizzytwo]

morning hun, yeah I think we did 😂

[1whitestar in reply to Blue-52]

Thank you yes .

[LhasaMomma]

What exactly did you want to know? It is an inherited genetic disorder firstly ..... You would have a parent with it. Secondly, most people with the gene have a very unusual slightly distorted facial structure which is quite easy for a doctor to pick up. Very easy to diagnose with blood tests.

[1whitestar in reply to LhasaMomma]

Thank you

[Lovemyfamily89]

I carry the beta-thallasseamia gene and I have passed that on to my daughter. We both suffer the consequences of permanently low iron and we have both been diagnosed with fibromyalgia (my daughter was diagnosed before I was). We also both have digestive issues and my daughter also has hashimotos and other auto-immune conditions. A lot of information about thallasseamia suggests you won’t have health issues if you are a carrier, but a lot of people report otherwise. Many years ago, I read a lot on a US forum, which detailed many common symptoms suffered by carriers of the gene.

[1whitestar in reply to Lovemyfamily89]

Thank you very much for the reply. This really helps. How can they up the iron levels as this has left me out of breath etc they are treating with iron tablets but not going up alot .

[Lovemyfamily89 in reply to 1whitestar]

My consultant told me the only way to up my iron level was a transfusion, but then over a period of time, the gene would would deplete the iron, so not really worth it, unless iron level was dangerously low. He also told me ‘you are always going to feel like you are running on a battery which is only, at most, 80%’. As a child I was constantly fed iron tablets, before they identified the thallasseamia, and I’m sure that made my bowel problems worse. He told me there’s no point giving me iron tablets. I’ve had a few gastroenterologists insist on doing gastroscopies because of low iron (they think I’m losing blood internally), so much so, that I told my then blood consultant that I needed a ‘get out of jail’ card (because swallowing camera tubes is not nice) and he agreed and wrote me a letter, which explains it, and points out not to give me iron tablets or keep putting cameras down my throat! I just try to keep as well as I can. Paving is very important. After having my two children, I did try to top up my iron, to make myself feel better, and I used spa tone iron water sachets, because they are gentler on the bowel. Sorry, I do not know of a way to permanently keep the iron levels up when someone is affected by thallasseamia