Experiences with

Sickle-cell anaemia

If anyone of you would be willing to share your personal experience with Vitamin D that would be appreciated. All good with what is thought to be true in the medicial field I am well versed in that angle. I have taken D3 with K2 and the results were not definitive so I discontinued. I have lived

I have just noticed a new NICE guideline has been started. Only a skeleton at present - in the guideline scoping state. It will probably be years before it is completed. It is good that it has been selected for further work but must be devastating for anyone suffering TED to see how far away this (potential

I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications

Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating

I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance

My Platelet count on my three monthly blood test has gone from 201 to 160 do they increase again or keep going down.? WBC is now 57.8 and Lymphocytes 53.5 Heamoglobin 140 Neutrophils 3.6 Basophils 0.2. Thanks

As some of you on the forum will know from my earlier posts I have been able to successfully block my severe RLS with buprenorphine patches (10-15mcg/hr). What I have not been able to prevent has been the nausea side effects. Initially I seemed to have found a way to block the nausea by halving the

5th November 2024 Serum TSH level - (amr) - 14.9 mu/L 0.27 - 4.20mu/L Full blood count - FBC - (amr) ! Haemoglobin estimation 157 g/L 120.00 - 150.00g/L Total white cell count

My platelets are now under 600, just! A big improvement from when they were over 1000 a few weeks ago. Local doctor wants me to carry on with Momelotinib and hydroxy, plus EPO injections. My haemoglobin had dropped from 109 to 98 though, still a lot better than the 75 - 85 it was for a very long time

Thanks to advice on here (particularly   SlowDragon, many thanks) I've got my act together and bought the below and wondered if there's anything I need to know about what time to take them. I've got: Bioactive B12 (Nature Provides) Basic B Complex (Thorne) - I recall advice to add in a week after

Hello, my medication was switched to Teva, I’ve never really taken notice before of what brand, but I’ve been taking for 5 days and feel like all my symptoms of having an under active thyroid have returned. The only change I’ve made is the different tablets. Could it be the brand? I’m on exactly the

https://youtu.be/9lb_Js5KMq4?si=0sBd0Bc8XxZA4NqUI watched this and wondered are our problems, fatigue, inflammation etc. to do with toxic build up of homocysteine? I already take B12, of course by injection, B9 l-methylfolate and B6 (though not p5p sort in a larger dose). I take a methyl B complex too

Hi everyone My Dr is starting me on Belimumab Benlysta and I just wanted to ask what people's experiences have been, particularly with the physical injection and pain side of things. As I have been on fragmin in the past for pregnancy and really did not enjoy that and struggled doing it / had to get

I’m still trying to recover from a health crash from Covid in May, better results now and I’m looking better and a lot of symptoms better but I’m still struggling in a lot of ways too. I believe iron and folate supplementation has now made my thyroid dose become too high so I’m knocking that dose

I am sick of consultants who only look at figures. Just spoken to an gastroenterologist. He refused ..or couldn't answer my questions. Won't give me an iron infusion because my iron is within range. But no explanation as to why it has plummeted. All other symptoms..'must be due to something else.' Doesn't

Some of you may have seen a post about this survey or will have received an email from the Pernicious Anaemia Society. For clarity we are posting this again separately and hope that many of you will sign up to membership and take part. We are also running a seminar on this topic this month https

Haemoglobin estimation -123g/l (120-150) Haematocrit -0.362 L/L (0.36-0.46) Platelet count 120 (150-450) Red blood cell count 3.88 (3.80-4.80) MCV 93.3 (83-101) MCH 31.7 (27-32) MCHC 340 (315-345) Red cell dist width 12.2 (11.60-14.00) Neutrophils 1.72 (2-7) Lymphocyte 0.8 (1-3) Hi the above

hello , Anyone have anxiety after starting high dose of iron pills. I already take b12 injections every 12 weeks. Potassium levels are in the range too. My recent Folate level is 8.8 ug/l. Took supplement for 3 months last year as it was low too. Ferritin is 59 ug/l . But i have a feeling ferritin will

I’ve been trying to get to the bottom of some horrible symptoms (dizziness, weakness, fatigue, feeling jittery, brain fog) and have resorted to a private blood test as not getting anywhere with GP. test shows high FT4 under thyroid section and high cystatin C under kidney section (which I believe is

Hello everyone. I've not posted before as only diagnosed in May and been struggling with the drugs, steroids, fatigue and feeling awful. I've been put on adalimumab as a single drug as I couldn't tolerate methexotrate injections and lefludomide. Had 2 onjections so far, third one this Friday, but