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Gaucher disease type 1 (GD1)
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T3 only and heart rate
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Hi all, I was started on liothyronine only 6 months ago and it has been life changing. It has resolved 4 years of debilitating symptoms, including chronic fatigue. I have faulty D102 and am a poor converter. I was finally taken off levothyroxine following abnormal ECG and tachycardia. I had a scan and
Mhaire
in
Thyroid UK
3 months ago
Would you like to know more about your antiarrhythmic medication?
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
Upon diagnosis of Atrial fibrillation (AF) many are prescribed antiarrhythmic medication(s). These help to restore the normal (sinus) heart rhythm. They work by blocking specific electrical conduction channels in the heart. Some can slow the activation of the heart muscle, and others slow the recovery
TracyAdmin
Partner
in
Atrial Fibrillation Support
3 months ago
Lupus and Fibromyalgia with Sjogren syndrome
I have been dealing with Lupus for 11 years and it has been a day by day experience for me I have a lot of pain and anxiety but I am taking turmeric 3 times a day to get rid of the inflammation but I am still feeling better with a lot of pain but not as bad . My back hurts so bad and I found out I have
I have been dealing with Lupus for 11 years and it has been a day by day experience for me I have a lot of pain and anxiety but I am taking turmeric 3 times a day to get rid of the inflammation but I am still feeling better with a lot of pain but not as bad . My back hurts so bad and I found out I have
Denise1219
in
LUpus Patients Understanding and Support
4 months ago
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Atrial Fibrillation
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
I'm in the process of finding out which blood thinner is best for me. Started with bisoprolol 1.25mg twice daily and feeling ill so have changed to Edoxaban causing cold hands and feet and breathlessness. I feel that my Cardiologist hasn't taken into consideration my other health conditions, i.e. Asthma
magriff1
in
Pain Concern
3 months ago
Low O2
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They want to follow up with pulmonologist but I think it's my blood flow. My lungs feel fine! I'm on warfarin. Anybody else going through this?
grandmagigitovivi
in
Hughes Syndrome APS Forum
3 months ago
Christmas
Wishing you all a very Happy 🎄 and a prosperous New Year in 2024. Do hope you are well enough to enjoy it . I am now Covid free but still coughing , sounds like croup. Have , had to cancel our plans for Christmas. Fatigue and still contagious . Having a quite one. Thank you all for your support and
Wishing you all a very Happy 🎄 and a prosperous New Year in 2024. Do hope you are well enough to enjoy it . I am now Covid free but still coughing , sounds like croup. Have , had to cancel our plans for Christmas. Fatigue and still contagious . Having a quite one. Thank you all for your support and
Stavrou1
in
CLL Support
7 months ago
Two weeks after ablation and I'm on the list for a cardioversion
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
It's two weeks today since I had an ablation for AF. I wasn't in AF before or immediately after the procedure but felt bad on day two with racing irregular pulse, dizziness etc. I had an ecg last week which showed me to be in AF and the arrhythmia nurse has called to let me know and tell me that I've
JoDogBlue
in
Atrial Fibrillation Support
3 months ago
Orgovyx and its side effects on the heart's electrical system
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
I've been taking Orgovyx for over two years with few side effects. But I have been experiencing episodes of dizziness and light-headedness over the last few months. My cardiologist has diagnosed bradycardia (a slow heart beat that can cause such episodes). I will need a pacemaker. I know a side effect
Boonster
in
Advanced Prostate Cancer
3 months ago
INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
Hi all, I had a stroke when I was 27 years old and 10 years later I got diagnosed with Palindromic Rheumatism, a form or Arthritis. With both, current medication is Warfarin and X is required. I feel limited about the regular INR control lead by coagulation variability. Thinking to get an INR meter
HectorManzanoDiaz
in
Anticoagulation Support
3 months ago
Bevacizumab v Niraparib
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
I've had chemo/debulking surgery/ chemo, and have just come to the end of the post surgery chemo. I've been told all along that I will continue with Bevacizumab as a maintenance treatment (I've had 3 rounds of it alongside chemo, 2 before the surgery and 1 after). I caught COVID towards the end of
LovemyJackRussell
in
My Ovacome
3 months ago
Lupus participants needed for a study with The University of Edinburgh!
Do you have Systemic Lupus and currently experience disordered eating? If you're 18+ years old, we want to hear about your experience. For more information, please contact: l.bruha@sms.ed.ac.uk by email or via Instagram @thelupusexperience Thank you for your time.
Do you have Systemic Lupus and currently experience disordered eating? If you're 18+ years old, we want to hear about your experience. For more information, please contact: l.bruha@sms.ed.ac.uk by email or via Instagram @thelupusexperience Thank you for your time.
michaellasmith
Administrator
in
LUPUS UK
4 months ago
chemo and genetic testing questions
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
My husband’s genetic testing of the biopsies came back. It’s 19 pages and I am having a super difficult time interpreting. His Oncologist Urologist is overwhelmed with duties and we probably won’t get reviewed at the level we need. attaching the executive summary. They said he tests positive for SPOP
Sunnysailor
in
Advanced Prostate Cancer
3 months ago
Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Wewo01
in
MPN Voice
7 months ago
Root cause of autoimmune B12 def
Hello- I was just diagnosed with PA and was prescribed injections (cyanocobalamin unfortunately). This was from a hematology referral for low white blood cells. That turned out to be ok, but the doc noticed my B12 was "low" at 310. I was already supplementing B12 so she just said keep doing that.
Hello- I was just diagnosed with PA and was prescribed injections (cyanocobalamin unfortunately). This was from a hematology referral for low white blood cells. That turned out to be ok, but the doc noticed my B12 was "low" at 310. I was already supplementing B12 so she just said keep doing that.
mchimes
in
Pernicious Anaemia Society
7 months ago
Radiation PSA, Orgovyx, Bone density
Rouge clone radiation on 10/31/23 has PSA continuing to drop to 0.85. MO plans to monitor PSA before requesting PSMA scan (insurance) unless it is increasing. Considering switch from Eligard to Orgovyx if PSA looks good in early Feb since Orgovyx apparently has less severe SE and doesn't tie me to
Rouge clone radiation on 10/31/23 has PSA continuing to drop to 0.85. MO plans to monitor PSA before requesting PSMA scan (insurance) unless it is increasing. Considering switch from Eligard to Orgovyx if PSA looks good in early Feb since Orgovyx apparently has less severe SE and doesn't tie me to
alperk
in
Advanced Prostate Cancer
7 months ago
End of Resus Trial
Hi all, The 6mth Resus Trial I was on finished in November and I was awaiting my results.. Bit gutted really. . After having 2 biopsies and 2 MRI scans the results have stayed the same. NAFLD. Fibrosis stage 3/4 verging on Cirrhosis... The trial drugs I was on ( whether placebo or the actual drug) were
Hi all, The 6mth Resus Trial I was on finished in November and I was awaiting my results.. Bit gutted really. . After having 2 biopsies and 2 MRI scans the results have stayed the same. NAFLD. Fibrosis stage 3/4 verging on Cirrhosis... The trial drugs I was on ( whether placebo or the actual drug) were
LolaBow
in
British Liver Trust
7 months ago
high heart rate at night
Anyone else out there experience something like this at night and have any idea if this is AFib or something else? Currently on 2.5mg bisoprolol daily thanks
Anyone else out there experience something like this at night and have any idea if this is AFib or something else? Currently on 2.5mg bisoprolol daily thanks
Craneguy83
in
Atrial Fibrillation Support
3 months ago
Has anyone taken Perdnisone or Prednisolone with Warfarin ?
Hello everyone, Just wondering if anyone has taken Perdnisone or Prednisolone with Warfarin ? Experienced any drug interactions ? Many thanks, Rosegardens
Hello everyone, Just wondering if anyone has taken Perdnisone or Prednisolone with Warfarin ? Experienced any drug interactions ? Many thanks, Rosegardens
rosegardens
in
Hughes Syndrome APS Forum
4 months ago
Hi everyone
Hi, it’s been a while but I’m still getting on with it , just out of hospital yet again with pericarditis again! I’m now on anti inflammatory medication and another 2 weeks of antibiotics for a kleibsom infection they haven’t cleared since December, I can’t remember the spelling but it’s a nasty bug.
Hi, it’s been a while but I’m still getting on with it , just out of hospital yet again with pericarditis again! I’m now on anti inflammatory medication and another 2 weeks of antibiotics for a kleibsom infection they haven’t cleared since December, I can’t remember the spelling but it’s a nasty bug.
Numptybrain
in
Lung Conditions Community Forum
4 months ago
Morning all!
woke this morning achey and bit shake.. not great night sleep lolmy question is please on Saturday I reduce from 9 pred down to 6...still no rheumatoid apps. how will I know if 6 is enough...Will the headaches return and if so..how long b4 they come back ? feel like opthalmology did good job but have
woke this morning achey and bit shake.. not great night sleep lolmy question is please on Saturday I reduce from 9 pred down to 6...still no rheumatoid apps. how will I know if 6 is enough...Will the headaches return and if so..how long b4 they come back ? feel like opthalmology did good job but have
Alliekat65
in
PMRGCAuk
4 months ago
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