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D-bifunctional protein (DBP) deficiency
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Clarification of blood results
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hi Could anyone give me some clarity on my anaemia test results received today. Test was done by Monitor My Health but no reference ranges included so all components just say "normal" which is very uninformative and irritating. I know from this forum results need to be optimal. Results: Haemoglobin 128g
Hollybushroad
in
Thyroid UK
1 year ago
DBS should I or should I not??
I'm sure everyone goes through this question over & over again!! Ten times, or more like 100 times in our heads when trying to make a decision and be happy with the choice made. I went for my assessment for dbs this week in Southmead Hospital,Bristol. I went through the test and just kept on thinking
I'm sure everyone goes through this question over & over again!! Ten times, or more like 100 times in our heads when trying to make a decision and be happy with the choice made. I went for my assessment for dbs this week in Southmead Hospital,Bristol. I went through the test and just kept on thinking
MARC1
in
Cure Parkinson's
9 months ago
No more earwax
It sounds weird, but I noticed in last year no more earwax. Does anyone else with PD have the same issue or know why this would happen? Dx 8 years ago, DBS 1/2023, only take c/l
It sounds weird, but I noticed in last year no more earwax. Does anyone else with PD have the same issue or know why this would happen? Dx 8 years ago, DBS 1/2023, only take c/l
Lbi1608
in
Cure Parkinson's
9 months ago
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i know this is going to sound weird but…….
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
jeeves19
in
Cure Parkinson's
9 months ago
Iron low
Hello, I just got back my blood work test and the iron read a little low, so I was wondering if anyone else here on the panel with pernicious anemia has had low iron. My iron binding is within range. Iron level is in range but iron percent transferring saturation is reading slightly low
Hello, I just got back my blood work test and the iron read a little low, so I was wondering if anyone else here on the panel with pernicious anemia has had low iron. My iron binding is within range. Iron level is in range but iron percent transferring saturation is reading slightly low
25092
in
Pernicious Anaemia Society
1 year ago
blood test back - any thoughts?
So now I am off all my meds, and started taking 200mg iron a night a month ago, my ferritin level just came back as 80, which I was quite surprised. The last one in 2020 was over 120. Should I double the dose and split it through the day or take 2 tabs before bed? Also my white blood count came back
So now I am off all my meds, and started taking 200mg iron a night a month ago, my ferritin level just came back as 80, which I was quite surprised. The last one in 2020 was over 120. Should I double the dose and split it through the day or take 2 tabs before bed? Also my white blood count came back
Phantom38
in
Restless Legs Syndrome
1 year ago
B1 Therapy #Case 2 *Andreia Peres
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
9 months ago
Personal insights into late stage PD thoughts
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
beehive23
in
Cure Parkinson's
9 months ago
Iron Deficiency Without Anemia (IDWA)
In my "I'm Alive!" post yesterday I discussed my crashing with effectively no iron in my system with a condition called Iron Deficiency Without Anemia (IDWA). As promised here is a more detail discussion of that condition that anyone with autoimmune PA/AIG should keep their eye on. Knowing that iron
In my "I'm Alive!" post yesterday I discussed my crashing with effectively no iron in my system with a condition called Iron Deficiency Without Anemia (IDWA). As promised here is a more detail discussion of that condition that anyone with autoimmune PA/AIG should keep their eye on. Knowing that iron
Rexz
in
Pernicious Anaemia Society
1 year ago
B1 Therapy #Case 1 * Manuela Correia
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
9 months ago
B1 and anti anxiety pills
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
JeanieBeanie
in
Cure Parkinson's
9 months ago
Iron tabs.help
Hi fellow suffererers, I've just been reading the posts re.Iron supplements. I take two Gentle Iron 20mg every other night, I notice that the first ingredient listed on the bottle is a Bulking Agent(Microcrystalline Cellulose),I was wondering if I can purchase a Gentle Iron without any Bulking Agent,
Hi fellow suffererers, I've just been reading the posts re.Iron supplements. I take two Gentle Iron 20mg every other night, I notice that the first ingredient listed on the bottle is a Bulking Agent(Microcrystalline Cellulose),I was wondering if I can purchase a Gentle Iron without any Bulking Agent,
Whymelord
in
Restless Legs Syndrome
1 year ago
Does anyone use ‘Active Iron’ in UK?
I searched for ferrous bisglycinate on Amazon UK which came up with Active Iron 25mg. I’ve now received it and found it contains ferrous sulfate 25mg! Now I don’t know if this is the right product or dose. Can anyone help?
I searched for ferrous bisglycinate on Amazon UK which came up with Active Iron 25mg. I’ve now received it and found it contains ferrous sulfate 25mg! Now I don’t know if this is the right product or dose. Can anyone help?
Dires
in
Restless Legs Syndrome
1 year ago
Iron supplements dosage
Is 20mg of gentle iron each night enough? It worked well the first night. What a wonderful relief it was. The second night it did work within 70 mins but returned within 3 hours.. I wonder why it didn't last as long? Would a slow release be better, like ferrous sulphate 325mg? Or will it need to be
Is 20mg of gentle iron each night enough? It worked well the first night. What a wonderful relief it was. The second night it did work within 70 mins but returned within 3 hours.. I wonder why it didn't last as long? Would a slow release be better, like ferrous sulphate 325mg? Or will it need to be
pennygates
in
Restless Legs Syndrome
1 year ago
Let's share your DBS settings
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
limcheeese22
in
Cure Parkinson's
9 months ago
Minoxidil
As most of you can relate to, I have given up so much in my life due to RLS. Every possible RLS trigger is in fact a trigger for me. I have given up HRT, SSRIs, statins, caffeine, alcohol, spicy foods (I used to put fresh jalapeno peppers on EVERYTHING), sugar, all processed foods, most carbs, and the
As most of you can relate to, I have given up so much in my life due to RLS. Every possible RLS trigger is in fact a trigger for me. I have given up HRT, SSRIs, statins, caffeine, alcohol, spicy foods (I used to put fresh jalapeno peppers on EVERYTHING), sugar, all processed foods, most carbs, and the
Birdland
in
Restless Legs Syndrome
1 year ago
swelling around DBS battery 5 weeks after surgery
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
Nurse7
in
Cure Parkinson's
9 months ago
DBS energy
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
jeeves19
in
Cure Parkinson's
10 months ago
Has anyone ever had an Iron infusion?
Having suffered from underactive thyroid for years and taking Levothyroxine with mixed results, I also suffer from low iron and ferritin and Vitamin D. I find it hard to get my levels of iron up despite eating red meat and green veg and supplementing, and wondered if anyone had tried an iron infusion
Having suffered from underactive thyroid for years and taking Levothyroxine with mixed results, I also suffer from low iron and ferritin and Vitamin D. I find it hard to get my levels of iron up despite eating red meat and green veg and supplementing, and wondered if anyone had tried an iron infusion
doingitfordad
in
Thyroid UK
1 year ago
Blood results
Hi, i have now received my blood results and would like some advice please Sue/Jools. Transferrin Saturation 44% Serum Iron 25umol/l (normal 14-29) Serum Transferrin 2.28g/l Serum Ferritin 50 I hopefully have an appointment today
Hi, i have now received my blood results and would like some advice please Sue/Jools. Transferrin Saturation 44% Serum Iron 25umol/l (normal 14-29) Serum Transferrin 2.28g/l Serum Ferritin 50 I hopefully have an appointment today
Dires
in
Restless Legs Syndrome
1 year ago
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