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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
Post meningitis
Hi everyone..my now 9 years old daughter had a meningitis when she was 4 n half. She struggles at school, she became a stutter and almost not willing to talk most of the time. It's killing me to see her suffer in her childhood. She doesn't want to play with other kids because of the way she speaks,
Hi everyone..my now 9 years old daughter had a meningitis when she was 4 n half. She struggles at school, she became a stutter and almost not willing to talk most of the time. It's killing me to see her suffer in her childhood. She doesn't want to play with other kids because of the way she speaks,
Lovehope2
in
Meningitis Now
7 months ago
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underactive thyroid
I have underactive thyroid I can’t gain weight I’m on medication but more importantly my hair is thinning, any suggestions what I can do for my hair I’ve been taking biotin but no results so far Thank you
I have underactive thyroid I can’t gain weight I’m on medication but more importantly my hair is thinning, any suggestions what I can do for my hair I’ve been taking biotin but no results so far Thank you
fjh29
in
Thyroid UK
1 year ago
Hypo & exhausted...something just isn't right
Hello, I've had hypothyroidism for around 5 years. Sometimes I feel ok with it, other times not. At the moment I feel awful and I'm trying to work out why. Symptoms: - exhaustion (running out of energy by the afternoon) - waking up in the morning not feeling refreshed - dry flaky scalp (I had
Hello, I've had hypothyroidism for around 5 years. Sometimes I feel ok with it, other times not. At the moment I feel awful and I'm trying to work out why. Symptoms: - exhaustion (running out of energy by the afternoon) - waking up in the morning not feeling refreshed - dry flaky scalp (I had
Izzywizzy124
in
Thyroid UK
1 year ago
How to take meds before blood test for T3 trial, advice please?
hello lovely helpful friends, I started a T3 trial in February - sadly I don’t feel much better but maybe need more time, also perimenopause & SIBO aren’t helping! I’m seeing endo again soon to review. Booked in for 9am blood test. I normally take 100mcg levothyroxine and 10mcg liothyronine T3 at
hello lovely helpful friends, I started a T3 trial in February - sadly I don’t feel much better but maybe need more time, also perimenopause & SIBO aren’t helping! I’m seeing endo again soon to review. Booked in for 9am blood test. I normally take 100mcg levothyroxine and 10mcg liothyronine T3 at
Hopetoheal22
in
Thyroid UK
1 year ago
Suggestions please
I’ve been having irregular heart rate issues for 2 months. Lots of infections and it was a month after covid. And upping to 125 oestrogen and starting testosterone. I’d started x2 Utrogestan daily a month before. I posted a couple of weeks following feeling horrific after tonsillitis and antibiotics
I’ve been having irregular heart rate issues for 2 months. Lots of infections and it was a month after covid. And upping to 125 oestrogen and starting testosterone. I’d started x2 Utrogestan daily a month before. I posted a couple of weeks following feeling horrific after tonsillitis and antibiotics
haggisplant
in
Thyroid UK
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
7 months ago
Bioton & testing + another question....
Guys, How long do you have to stop taking biotin before doing your thyroid bloods? I've heard 2 days is sufficient..... And can someone tell me the difference in licensed T3 (liothyronine) & unlicensed? Not that I'm on T3, but I'm wondering... Cheers
Guys, How long do you have to stop taking biotin before doing your thyroid bloods? I've heard 2 days is sufficient..... And can someone tell me the difference in licensed T3 (liothyronine) & unlicensed? Not that I'm on T3, but I'm wondering... Cheers
joey82
in
Thyroid UK
1 year 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
Jarrow-BRight
Good morning all! I have been taking B-Right for a while now (few months) taking it when I remember really but not with my levo! On Thursday I took it just before lunch and about 20mins later I had a Niacin flush! Not nice as basically felt like a allergic reaction 😞 a bit worrying! I took a antihistamine
Good morning all! I have been taking B-Right for a while now (few months) taking it when I remember really but not with my levo! On Thursday I took it just before lunch and about 20mins later I had a Niacin flush! Not nice as basically felt like a allergic reaction 😞 a bit worrying! I took a antihistamine
Doris11
in
Thyroid UK
1 year ago
Am I at risk of shingles
Hello - i'm about to go and spend a weekend with my in laws and they have just announced they have shingles. Am I at risk of this having ET?
Hello - i'm about to go and spend a weekend with my in laws and they have just announced they have shingles. Am I at risk of this having ET?
Fjdjdjdjd
in
MPN Voice
8 months ago
Biotin boosts cGMP, cGMP considered as potential treatment of Parkinson’s
Biotin boots cGMP https://pubmed.ncbi.nlm.nih.gov/29150274/ cGMP signaling pathway in striatum is considered as a potential target for the treatment of Parkinson's https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5642137/
Biotin boots cGMP https://pubmed.ncbi.nlm.nih.gov/29150274/ cGMP signaling pathway in striatum is considered as a potential target for the treatment of Parkinson's https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5642137/
Gigi216
in
Cure Parkinson's
1 year ago
questions before private endo
Recent blood tests have revealed the following. Blood test taken without medication and food at 9 am, followed protocol re avoiding biotin before etc. Medication 100 mg levothyroxine ( accord) CRP - 0.14 < 3 Ferritin 23 (30 - 150) B Active 73 (37.5 - 188) Folate Serum 31.9 (8.83 - 60.8) Vit D
Recent blood tests have revealed the following. Blood test taken without medication and food at 9 am, followed protocol re avoiding biotin before etc. Medication 100 mg levothyroxine ( accord) CRP - 0.14 < 3 Ferritin 23 (30 - 150) B Active 73 (37.5 - 188) Folate Serum 31.9 (8.83 - 60.8) Vit D
Hopeful129
in
Thyroid UK
1 year ago
Biotin may increase the gene expression of SLC19A3, SLC19A3 is associated with Parkinson’s disease
https://www.omim.org/entry/607483#1 Genes associated with Parkinson’s https://www.ncbi.nlm.nih.gov/books/NBK570369/table/dnajc6-pd.T.genes_associated_with_dyston/
https://www.omim.org/entry/607483#1 Genes associated with Parkinson’s https://www.ncbi.nlm.nih.gov/books/NBK570369/table/dnajc6-pd.T.genes_associated_with_dyston/
Gigi216
in
Cure Parkinson's
1 year ago
Thyroid and cortisol results
Hi all, just got results back from latest NHS bloods. Any thoughts? This was primarily to try and 'verify' my private blood test results showing above-range TSH (6.1) and high antibodies. Test was done just before 9am, fasting, currently not on any meds, no biotin week before. I also asked for serum
Hi all, just got results back from latest NHS bloods. Any thoughts? This was primarily to try and 'verify' my private blood test results showing above-range TSH (6.1) and high antibodies. Test was done just before 9am, fasting, currently not on any meds, no biotin week before. I also asked for serum
seveneleven
in
Thyroid UK
1 year ago
Medichecks blood 🩸 test whilst on weekly B12 injections
Hello 👋 I’ve just ordered my Medichecks advanced thyroid test . I’ve held off biotin for this test but just read that I should also avoid B12 as well but I’m having weekly injections atm…..shall I do test anyway 🙈 Any advice much appreciated 🙏
Hello 👋 I’ve just ordered my Medichecks advanced thyroid test . I’ve held off biotin for this test but just read that I should also avoid B12 as well but I’m having weekly injections atm…..shall I do test anyway 🙈 Any advice much appreciated 🙏
Kisca
in
Thyroid UK
1 year ago
Viral meningitis
My 17 year old daughter was diagnosed with viral meningitis last weekend and this was confirmed on Monday. Initially she was given antiviral and antibiotics because they was unsure if it was bacterial meningitis. She had been unwell for 5 or 6 weeks. Permanent headache that painkillers didn't touch
My 17 year old daughter was diagnosed with viral meningitis last weekend and this was confirmed on Monday. Initially she was given antiviral and antibiotics because they was unsure if it was bacterial meningitis. She had been unwell for 5 or 6 weeks. Permanent headache that painkillers didn't touch
Sylv1969
in
Meningitis Now
8 months ago
Biotin found to be helpful in Parkinson’s and Alzheimer’s
https://medicalxpress.com/news/2021-01-biotin-mitochondria-dementia-reveals.html
https://medicalxpress.com/news/2021-01-biotin-mitochondria-dementia-reveals.html
Gigi216
in
Cure Parkinson's
1 year ago
GCA-Lyme Disease Connection?
Hi all, My wife is a long-time Lyme Disease sufferer, and has recently had a consultation with a biologist/pathologist. This person takes a blood sample and then looks at it under the microscope while the patient is present -- and then comments on what has been seen. My wife had the classic signs
Hi all, My wife is a long-time Lyme Disease sufferer, and has recently had a consultation with a biologist/pathologist. This person takes a blood sample and then looks at it under the microscope while the patient is present -- and then comments on what has been seen. My wife had the classic signs
montebello
in
PMRGCAuk
8 months ago
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