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Experiences with
D-bifunctional protein (DBP) deficiency
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Next NoSilverBullet webinar on 12th of February: Dr Raul Martinez on “The role of Focused Ultrasound in the management of Parkinson's”
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
Michel0220
in
Cure Parkinson's
6 months ago
T3 much better but feeling worse again!
I'm on a high dose of levo, 200mcg per day (I weigh 80kg right now), and just got test results back that show my T3 levels are much improved. However, of course, my TSH is now below range and my T4 way over. My ferritin, etc, is as bad as it's ever been, despite taking 210mg of ferrous fumarate each
I'm on a high dose of levo, 200mcg per day (I weigh 80kg right now), and just got test results back that show my T3 levels are much improved. However, of course, my TSH is now below range and my T4 way over. My ferritin, etc, is as bad as it's ever been, despite taking 210mg of ferrous fumarate each
crabapple1
in
Thyroid UK
1 year ago
Terrified
I’m in a complete mess. In 2011 I was diagnosed with vitamin B12 deficiency, my level was 154 and I also had vitamin D deficiency and iron deficiency at the same time. I was given loading doses of B12 and felt so much better and then went onto 3 monthly injections. I found that towards the end of the
I’m in a complete mess. In 2011 I was diagnosed with vitamin B12 deficiency, my level was 154 and I also had vitamin D deficiency and iron deficiency at the same time. I was given loading doses of B12 and felt so much better and then went onto 3 monthly injections. I found that towards the end of the
Hayley31
in
Pernicious Anaemia Society
1 year ago
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Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
nednedned
in
Cure Parkinson's
6 months ago
Advice on latest ferritin, VitD, vitB12 please
Latest results, TDL 5.7.23 (in image)
• Vitamin B12 256 nmol/L (25.1 - 165) 165.0% HIGH • Vitamin D 96 nmol/L (50 - 200) 30.7% • Ferritin 241 ug/L (13 - 150) 166.4% HIGH
NHS iron panel 3.7.23
• Ferritin 133.2 ug/L (10 - 291) 43.8% • Serum Iron 16.6 umol/L (9 - 30.4) 35.5%
Medichecks
Latest results, TDL 5.7.23 (in image)
• Vitamin B12 256 nmol/L (25.1 - 165) 165.0% HIGH • Vitamin D 96 nmol/L (50 - 200) 30.7% • Ferritin 241 ug/L (13 - 150) 166.4% HIGH
NHS iron panel 3.7.23
• Ferritin 133.2 ug/L (10 - 291) 43.8% • Serum Iron 16.6 umol/L (9 - 30.4) 35.5%
Medichecks
Insomania
in
Thyroid UK
1 year ago
augmentation pregabilin
Hi I have been taking pregabilin 150 mg early evening which has been very effective up until recently, for my RLS. I have complex medical issues and have recently had an iron infusion. I have a 12 hour abdominal surgery due on 26 th September. I would just like clarification that augmentation is
Hi I have been taking pregabilin 150 mg early evening which has been very effective up until recently, for my RLS. I have complex medical issues and have recently had an iron infusion. I have a 12 hour abdominal surgery due on 26 th September. I would just like clarification that augmentation is
Esme2007
in
Restless Legs Syndrome
1 year ago
Please help with blood results for iron status
Hi everyone, I hope someone can tell me what's going on with my iron status and whether I need iron supplements ( hair loss, fatigue).My GP isn't that attentive and I was told all was OK with now explaining about markers. Serum Tibc 45 umol/l (range 53-85) Serum iron level 27 unol/l ( range 12-36) Serum
Hi everyone, I hope someone can tell me what's going on with my iron status and whether I need iron supplements ( hair loss, fatigue).My GP isn't that attentive and I was told all was OK with now explaining about markers. Serum Tibc 45 umol/l (range 53-85) Serum iron level 27 unol/l ( range 12-36) Serum
sasha_nico
in
Thyroid UK
1 year ago
AAV-GAD Gene Therapy
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
JohnP65
in
Cure Parkinson's
7 months ago
Understanding listening time at certain Db?
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Fulltimemuso
in
Tinnitus UK
7 months ago
8 week bloodtest
After my last bloodtest I reduced my levothyroxine dose to 137.5mcg, i am still supplementing with B Complex, 1 ferrous fumarate iron tablet a day with vit c capsule, 5000iu vitamin D and a magnesium capsule. These are my latest test results after 8 weeks, i stopped the B complex and iron tablets a
After my last bloodtest I reduced my levothyroxine dose to 137.5mcg, i am still supplementing with B Complex, 1 ferrous fumarate iron tablet a day with vit c capsule, 5000iu vitamin D and a magnesium capsule. These are my latest test results after 8 weeks, i stopped the B complex and iron tablets a
catpurple7
in
Thyroid UK
1 year ago
Ferratin level
Hi. Probably in t he wrong section but all thoughts welcome. My ferratin is in the 'normal' range but low and dropping, even though I have been taking oral iron spray daily, liquid iron supplement given by my doctor, high iron foods in my diet. I get days of complete fatigue, other days I can cope but
Hi. Probably in t he wrong section but all thoughts welcome. My ferratin is in the 'normal' range but low and dropping, even though I have been taking oral iron spray daily, liquid iron supplement given by my doctor, high iron foods in my diet. I get days of complete fatigue, other days I can cope but
fiftyone
in
Thyroid UK
1 year ago
Has anyone tried “compassionate use” or “right to try” laws?
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
LeharLover62
in
Cure Parkinson's
7 months ago
Treatment for severe OCD
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
languageteacher
in
My OCD Community
7 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
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
DBS stopped working
I’m looking to see if anyone has experienced similar DBS results, I had my DBS(GPI) surgery on 7/31 and immediately had positive results before the switch on. It felt like I was cured but I knew that this was the honeymoon phase. After a week or so my symptoms returned until I had my first programming
I’m looking to see if anyone has experienced similar DBS results, I had my DBS(GPI) surgery on 7/31 and immediately had positive results before the switch on. It felt like I was cured but I knew that this was the honeymoon phase. After a week or so my symptoms returned until I had my first programming
robclem
in
Cure Parkinson's
8 months ago
DBS on the leg trial
https://parkinsonsnewstoday.com/news/noninvasive-way-deep-brain-stimulation-parkinsons-trial/
https://parkinsonsnewstoday.com/news/noninvasive-way-deep-brain-stimulation-parkinsons-trial/
MARC1
in
Cure Parkinson's
8 months 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
serum iron
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
While seeing a Dr at Leicester hospital I was asked to have a blood test, it wasn’t a fasting one. I have just had a letter, my serum iron was 12 there is no mention of anything else. The registrar has written “ Low iron can make restless legs worse and therefore I would be grateful if you could investigate
Elsie77
in
Restless Legs Syndrome
1 year ago
DBS update
So gang. 3 months following DBS. I had it done because my dystonia was getting so bad and the reliability of the meds was open to question. I might thrive on a particular dose of Madopar and then the next day would be stuck whilst on a walk after having taken the same. It was very hard to plan anything
So gang. 3 months following DBS. I had it done because my dystonia was getting so bad and the reliability of the meds was open to question. I might thrive on a particular dose of Madopar and then the next day would be stuck whilst on a walk after having taken the same. It was very hard to plan anything
jeeves19
in
Cure Parkinson's
8 months ago
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