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Experiences with
Medium chain acyl dehydrogenase deficiency
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Chemotherapy or Pluvicto
I just completed Radium 223 treatment. PSA has been doubling since I failed Zytiga. Last scans show progression. I am offered chemo or a trial with Pluvicto. The cancer is throughout my bones. What should I do. I have had chemo at the beginning of this journey and it worked then.
I just completed Radium 223 treatment. PSA has been doubling since I failed Zytiga. Last scans show progression. I am offered chemo or a trial with Pluvicto. The cancer is throughout my bones. What should I do. I have had chemo at the beginning of this journey and it worked then.
Islandboy2021
in
Advanced Prostate Cancer
9 months ago
Complicated with NASH, looking for next step
HI, I feel so discouraged by healthcare. My story - No one can say "why," yet I appear to have fast advancing liver disease. I do have several autoimmune ds ie Hashimotos, Fibromyalgia, adrenal issue etc - but so far tested neg related to liver, no hepatitis etc but am + EBV w/o mono, No diabetes A1c
HI, I feel so discouraged by healthcare. My story - No one can say "why," yet I appear to have fast advancing liver disease. I do have several autoimmune ds ie Hashimotos, Fibromyalgia, adrenal issue etc - but so far tested neg related to liver, no hepatitis etc but am + EBV w/o mono, No diabetes A1c
NeverBeen2Spain
in
Living with Fatty Liver and NASH
11 months ago
Secondary adrenal insufficiency after immunotherapy
First of all, I am so happy to have found this forum! I`ve been searching for the last two months for an active forum where I could find somebody like me, with secondary adrenal insufficiency. Last summer I was diagnosed with Triple Negative breast cancer stage 2(no limph node involvement). I begun
First of all, I am so happy to have found this forum! I`ve been searching for the last two months for an active forum where I could find somebody like me, with secondary adrenal insufficiency. Last summer I was diagnosed with Triple Negative breast cancer stage 2(no limph node involvement). I begun
Outandabout-1
in
Thyroid UK
11 months ago
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low folate
I gave PBC for 15 years and I’m on urso. My levels are reasonable. I have acid reflux, and I’m on Nexium 10 daily. In the last few months my folate has dropped below the low end of the range. I’m wondering if anyone else has this and is it related to PBC or Nexium. I don’t have anaemia. Thank you
I gave PBC for 15 years and I’m on urso. My levels are reasonable. I have acid reflux, and I’m on Nexium 10 daily. In the last few months my folate has dropped below the low end of the range. I’m wondering if anyone else has this and is it related to PBC or Nexium. I don’t have anaemia. Thank you
Gwelos
in
PBC Foundation
11 months ago
Could I try BAT to restore sensitivity to previously used antiandrogen treatments.
I failed Abiraterone and SOC doesn't allow the switch to Enzalutamide. I was reading on the use of BAT to resensitize mCRPC. Would this be a therapy that could work or is it too late now that I have failed. I know its not SOC but I am running out of choices and looking for some clarity. Its basically
I failed Abiraterone and SOC doesn't allow the switch to Enzalutamide. I was reading on the use of BAT to resensitize mCRPC. Would this be a therapy that could work or is it too late now that I have failed. I know its not SOC but I am running out of choices and looking for some clarity. Its basically
Islandboy2021
in
Advanced Prostate Cancer
9 months ago
Advice on Medichecks and GP iron results please
On 21st June I had some tests done by GP early morning and fasting. Results were: IRON = 13 umol/l (6-35) SERUM TRANSFERRIN =2.52g/l (2-3.6) TRANSFERRIN SATURATION= 21% No range given FERRITIN = 69ug/l (13-150 or 13-300 if post meno) I am past meno
On 21st June I had some tests done by GP early morning and fasting. Results were: IRON = 13 umol/l (6-35) SERUM TRANSFERRIN =2.52g/l (2-3.6) TRANSFERRIN SATURATION= 21% No range given FERRITIN = 69ug/l (13-150 or 13-300 if post meno) I am past meno
Eton
in
Thyroid UK
1 year ago
Enzalutamide any advice/tips for dealing with side effects
Stage 4 PCA for last 3 years. Had 6 cycles of Chemo and then Abiraterone for 18+ months (PSA dropped to 0.2 then more recently rose to 58 in June '23 ). Abiraterone eventually stopped working and I was able to join Radium 223 trial. Completed 5 of 6 cycles of Radium 223, then elected to stop since scans
Stage 4 PCA for last 3 years. Had 6 cycles of Chemo and then Abiraterone for 18+ months (PSA dropped to 0.2 then more recently rose to 58 in June '23 ). Abiraterone eventually stopped working and I was able to join Radium 223 trial. Completed 5 of 6 cycles of Radium 223, then elected to stop since scans
Ronnie7C
in
Advanced Prostate Cancer
9 months ago
Iron Infusions for RLS
Another research paper showing iron infusions of Ferric Carboxymaltose improves RLS. We now have the uphill battle of convincing our GPs and neurologists. If you are trying to persuade your medical team to follow the Mayo Clinic Algorithm and increase serum ferritin as first line treatment for RLS,
Another research paper showing iron infusions of Ferric Carboxymaltose improves RLS. We now have the uphill battle of convincing our GPs and neurologists. If you are trying to persuade your medical team to follow the Mayo Clinic Algorithm and increase serum ferritin as first line treatment for RLS,
Joolsg
in
Restless Legs Syndrome
1 year ago
Is this IBS
Hi folks, I was diagnosed with Diverticulitis last year and I usually have a bout of it every month or so for 5/10 days. Then in between times, I have been fine. This latest bout was really bad for about 4 days then every day since (over a month now) I need the loo 2/3 times in quick succession first
Hi folks, I was diagnosed with Diverticulitis last year and I usually have a bout of it every month or so for 5/10 days. Then in between times, I have been fine. This latest bout was really bad for about 4 days then every day since (over a month now) I need the loo 2/3 times in quick succession first
wb54
in
IBS Network
1 year ago
AGA - American College of Gastroenterology Clinical Practice Guideline: Pharmacological Management of Chronic Idiopathic Constipation - 2023
https://journals.lww.com/ajg/fulltext/2023/06000/american_gastroenterological_association_american.13.aspx Abstract INTRODUCTION: Chronic idiopathic constipation (CIC) is a common disorder associated with significant impairment in quality of life. This clinical practice guideline, jointly developed
https://journals.lww.com/ajg/fulltext/2023/06000/american_gastroenterological_association_american.13.aspx Abstract INTRODUCTION: Chronic idiopathic constipation (CIC) is a common disorder associated with significant impairment in quality of life. This clinical practice guideline, jointly developed
Meleber
in
IBS Network
9 months ago
Time to come off Ropinerole 4 years after being on Pramepexole 7 years. What else can I try????
I've been on these and both caused augmentation and with both was increased to maximum dose yet still had restless legs causing sleepless nights, anxiety and depression.Before I went onto medication I found out I was severely anaemic, I don't know how it happened to me as I was previously fit and healthy
I've been on these and both caused augmentation and with both was increased to maximum dose yet still had restless legs causing sleepless nights, anxiety and depression.Before I went onto medication I found out I was severely anaemic, I don't know how it happened to me as I was previously fit and healthy
Maddie1000
in
Restless Legs Syndrome
1 year ago
3B and falling fast
Good day: Age 68, farm wife. BMI 25. (about 20# overweight) Non-smoker. Stage 3B kidney disease, and GFR falling every month. Right now at 30 with creatinine at 1.81. Comorbidities are Polymyalgia Rheumatica , Giant Cell Arteritis, MGUS, resistant hypertension. This morning was 185/107
Good day: Age 68, farm wife. BMI 25. (about 20# overweight) Non-smoker. Stage 3B kidney disease, and GFR falling every month. Right now at 30 with creatinine at 1.81. Comorbidities are Polymyalgia Rheumatica , Giant Cell Arteritis, MGUS, resistant hypertension. This morning was 185/107
phebamom
in
Kidney Disease
10 months ago
Ongoing issues
Hi allI am 1 year out of treatment for stage 3C1 cervical cancer. I had radiotherapy, chemotherapy and brachytherapy. I have since had a colonoscopy, bowel biopsies, a SeHCAT scan and EPI test because of terrible bowel issues. I have seen a letter to my GP saying my SeHCAT and EPI test were clear but
Hi allI am 1 year out of treatment for stage 3C1 cervical cancer. I had radiotherapy, chemotherapy and brachytherapy. I have since had a colonoscopy, bowel biopsies, a SeHCAT scan and EPI test because of terrible bowel issues. I have seen a letter to my GP saying my SeHCAT and EPI test were clear but
Dasch123
in
Pelvic Radiation Disease Association
1 year ago
any info please
My consultant has suggested I try Valproate or Levetiracetam for my RLS/PLMD. Has anybody tried either of these and had any success or otherwise?
My consultant has suggested I try Valproate or Levetiracetam for my RLS/PLMD. Has anybody tried either of these and had any success or otherwise?
soupersuzy
in
Restless Legs Syndrome
9 months ago
Weight gain and IBS
my story is long, so I will keep it concise. I have had IBS with urgency since I was a teenager getting progressively worse when I started work. I have tried lots of things none of which resolved things. Currently I take 4 Imodium per day if I have to go anywhere as a precaution, if I try to not take
my story is long, so I will keep it concise. I have had IBS with urgency since I was a teenager getting progressively worse when I started work. I have tried lots of things none of which resolved things. Currently I take 4 Imodium per day if I have to go anywhere as a precaution, if I try to not take
Huggit1
in
IBS Network
1 year ago
IBS symptoms?
Hi, I’m hoping someone can give me some advice on my symptoms. I have had bowel issues for a long time (around 20 years) mainly in the form of gas and bloating and cycles of diarrhoea and constipation. The bloating part was the only bit that really got me down, the rest was manageable, so I decided
Hi, I’m hoping someone can give me some advice on my symptoms. I have had bowel issues for a long time (around 20 years) mainly in the form of gas and bloating and cycles of diarrhoea and constipation. The bloating part was the only bit that really got me down, the rest was manageable, so I decided
Elliehca
in
IBS Network
1 year ago
Dialysis
Hello Just looking for some advice as we are completely stumped over the lack of information my mam has been giving.... My mam starts dialysis 3 times a week starting tomorrow she also has diabetes and we are so confused as to what she can eat after her dialysis the dietician we spoke to was completely
Hello Just looking for some advice as we are completely stumped over the lack of information my mam has been giving.... My mam starts dialysis 3 times a week starting tomorrow she also has diabetes and we are so confused as to what she can eat after her dialysis the dietician we spoke to was completely
Jk2023
in
Kidney Disease
1 year ago
Your thyroid and iron deficiency stories, please
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
My ferritin is now 7. (Safe levels being 13 and above). Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely). MCHC, transferrin, serum iron etc all out of whack, too
HowNowWhatNow
in
Thyroid UK
1 year ago
tablet advice
hi. I currently take Candesartan for HBP but I've had low blood sodium readings for a couple of years. GP says nothing to worry about. But as I've been experiencing dizzy spells and anxiety etc I would like to change to something that wont affect my sodium. I've tried felodpine and ramipril. I don't
hi. I currently take Candesartan for HBP but I've had low blood sodium readings for a couple of years. GP says nothing to worry about. But as I've been experiencing dizzy spells and anxiety etc I would like to change to something that wont affect my sodium. I've tried felodpine and ramipril. I don't
philippa1412
in
High Blood Pressure Support
1 year ago
Blood sodium levels
Stage 3b My last labs over the past year have had a decrease in my blood sodium levels. Last test was 131. Nephrologist said I need to start eating more protein as that helps to keep sodium in your bloodstream instead of getting out in your body tissue. I don’t have any edema and take a diuretic. Not
Stage 3b My last labs over the past year have had a decrease in my blood sodium levels. Last test was 131. Nephrologist said I need to start eating more protein as that helps to keep sodium in your bloodstream instead of getting out in your body tissue. I don’t have any edema and take a diuretic. Not
MGsolid
in
Kidney Disease
1 year ago
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