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A recent consultation with a CLL specialist, and confirmation of genetic markers
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
My wife had an appointment with CLL specialist Dr. C. Chen yesterday. We also performed other blood tests. I had a pleasant consultation with Dr. Chen. I was perplexed because of the TP53 mutation, whether it was discovered or not. I posted an earlier post that she has a TP53 mutation. I am sorry for
Sagarcanada
in
CLL Support
1 month ago
Beatsons Glasgow RAI
Sorry, reposting due to stupid autocorrect! Have had total thyroidectomy and removal of lymph glands. Now waiting for appointment for RAI at Beatsons, Glasgow. Can anyone tell me what to expect and what it's like staying as RAI patient in Beatsons?
Sorry, reposting due to stupid autocorrect! Have had total thyroidectomy and removal of lymph glands. Now waiting for appointment for RAI at Beatsons, Glasgow. Can anyone tell me what to expect and what it's like staying as RAI patient in Beatsons?
HelenaJ
in
Thyroid UK
1 month ago
Bastions Glasgow
Hi, I'm due to get radioactive iodine soon. Can anyone tell me what to expect and what it will be like in Beatsons?
Hi, I'm due to get radioactive iodine soon. Can anyone tell me what to expect and what it will be like in Beatsons?
HelenaJ
in
Thyroid UK
1 month ago
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Test results and advice for appointment
Hello, can anyone help me prepare for my endocrinologist appt later? i've summarised results attached and my symptoms are below. fatigue and brain fog are making this difficult for me. What do you make of these results? what should i ask the end for? in addition to the above I have DHEA/cortisol disfunction
Hello, can anyone help me prepare for my endocrinologist appt later? i've summarised results attached and my symptoms are below. fatigue and brain fog are making this difficult for me. What do you make of these results? what should i ask the end for? in addition to the above I have DHEA/cortisol disfunction
Laundry
in
Thyroid UK
7 months ago
combined therapy help
Hi a little advise if possible: normally levo 125mg and thybon 5mg. A new endo has taken me off thybon to try and work out if I have diabetes inspidius (water balance issues). I think I was slightly too hyper but 3 weeks later and I feel terrible - weight gain, constipation, no apetite. I don’t think
Hi a little advise if possible: normally levo 125mg and thybon 5mg. A new endo has taken me off thybon to try and work out if I have diabetes inspidius (water balance issues). I think I was slightly too hyper but 3 weeks later and I feel terrible - weight gain, constipation, no apetite. I don’t think
DancerLisboa
in
Thyroid UK
2 months ago
Devastated
I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am pissed and scared. I had 3 months on Wait and Watch. Chronic was supposed to mean 3 years or 10 years before treatment. My wife and I are driving
I went to my first three month blood test today. I am at Rai 0. I feel great. My WBC and Lymphocytes doubled in 3 months. I am starting V and O on Monday. I am pissed and scared. I had 3 months on Wait and Watch. Chronic was supposed to mean 3 years or 10 years before treatment. My wife and I are driving
Hidden
in
CLL Support
2 months ago
Surgery or not.
Hi everyone.Had my one year appointment with consultant yesterday in hospital which was a change from the last year as all over phone. I knew something was coming. She basically said wasent happen as throughout the year never found right dose or balance for it. Had gone from hyper to hypo very quickly
Hi everyone.Had my one year appointment with consultant yesterday in hospital which was a change from the last year as all over phone. I knew something was coming. She basically said wasent happen as throughout the year never found right dose or balance for it. Had gone from hyper to hypo very quickly
JoMax
in
Thyroid UK
2 months ago
long term carbimazole
I currently take 5mg Carbimazole alternate days. I have toxic nodules so stopping meds is not an option. Like many people on here I have been pushed towards RAI or surgery TT. Every time I feel I get near to a decision I learn something new! I am interested in what people have been told about staying
I currently take 5mg Carbimazole alternate days. I have toxic nodules so stopping meds is not an option. Like many people on here I have been pushed towards RAI or surgery TT. Every time I feel I get near to a decision I learn something new! I am interested in what people have been told about staying
Platypus8
in
Thyroid UK
2 months ago
Carbimazole and severe bloating
I've been taking carbimazole now for 3 weeks but have been having extreme painful bloating in my abdomen. Not feeling sick and bowel movements are normal if not less regular. I cancelled my appointment for RAI to opt to try tablets first but this tummy ache is debilitating. Do side effects wear off
I've been taking carbimazole now for 3 weeks but have been having extreme painful bloating in my abdomen. Not feeling sick and bowel movements are normal if not less regular. I cancelled my appointment for RAI to opt to try tablets first but this tummy ache is debilitating. Do side effects wear off
Spagbol24
in
Thyroid UK
2 months ago
constant running nose
have had graves for over 10 yrs . Had RAI only wish I had never had this this treatment . On Levo 100mcgs and 75mcgs alternative days . My results have been normal . Have even been able to try T3 to no avail . My problem is constant fatigue have to push myself in the morning as so so tired . Although
have had graves for over 10 yrs . Had RAI only wish I had never had this this treatment . On Levo 100mcgs and 75mcgs alternative days . My results have been normal . Have even been able to try T3 to no avail . My problem is constant fatigue have to push myself in the morning as so so tired . Although
annie123
in
Thyroid UK
2 months ago
constant running nose
have had graves for over 10 yrs . Had RAI only wish I had never had this this treatment . On Levo 100mcgs and 75mcgs alternative days . My results have been normal . Have even been able to try T3 to no avail . My problem is constant fatigue have to push myself in the morning as so so tired . Although
have had graves for over 10 yrs . Had RAI only wish I had never had this this treatment . On Levo 100mcgs and 75mcgs alternative days . My results have been normal . Have even been able to try T3 to no avail . My problem is constant fatigue have to push myself in the morning as so so tired . Although
annie123
in
Thyroid UK
2 months ago
Update on my CLL diagnosis
Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai stage 3. My oncologist at the Cancer Center put me on the O and V treatment which started in Dec 2022. I finished the O in May 2023 and the
Hello, I was diagnosed with CLL in Oct 2022 and was told I had # CLL/SLL with extensive bone marrow involvement, trisomy 12, p53 wild-type, IgHV-mutated, Rai stage 3. My oncologist at the Cancer Center put me on the O and V treatment which started in Dec 2022. I finished the O in May 2023 and the
tenniselbowz
in
CLL Support
2 months ago
Question for thyroidectomized patients: iodine processing issues?`
Hi, it seems to me that if I eat a bit too much seafood, I see some adverse issues. I do not have a thyroid, and wonder - since the thyroid is by far the organ with the highest need for iodine... how does iodine get processed in the body of someone who does not have a thyroid? If you also lack a thyroid
Hi, it seems to me that if I eat a bit too much seafood, I see some adverse issues. I do not have a thyroid, and wonder - since the thyroid is by far the organ with the highest need for iodine... how does iodine get processed in the body of someone who does not have a thyroid? If you also lack a thyroid
Arrigo
in
Thyroid UK
4 months ago
T3 Trial continued
Medichecks 20 March 2024 History:
Hypothyroid (after RAI in c2004)
Spent 2023 improving folate, B12, Vit D although ferritin still poor. Came off PPIs and now take Gaviscon twice daily. Gastritis issues ongoing though. Officially a poor converter (dud DIO2) so really wanted to try T3 Gluten
Medichecks 20 March 2024 History:
Hypothyroid (after RAI in c2004)
Spent 2023 improving folate, B12, Vit D although ferritin still poor. Came off PPIs and now take Gaviscon twice daily. Gastritis issues ongoing though. Officially a poor converter (dud DIO2) so really wanted to try T3 Gluten
Rambling9
in
Thyroid UK
3 months ago
Endo finally tested FT3! Thoughts?
At my last endo appt early Dec, the consultant kept his same stance that my blood tests were all in range and my symptoms were all due to perimenopause. He said there was slight room for a small increase in levothyroxine so ive gone from 125x5/100x2 to 125x6 /100x1 and told me to speak to my gp and
At my last endo appt early Dec, the consultant kept his same stance that my blood tests were all in range and my symptoms were all due to perimenopause. He said there was slight room for a small increase in levothyroxine so ive gone from 125x5/100x2 to 125x6 /100x1 and told me to speak to my gp and
JUUJOO
in
Thyroid UK
3 months ago
sea moss
my 30 year old daughter had been treated for hypothyroidism for the last 8 years and takes 125 mcg Liothyronine. Recently a friend in Hong Kong where she lives as suggested sea moss supplement and she feels she has more energy and less brain fog. I’m concerned about the iodine in it but other components
my 30 year old daughter had been treated for hypothyroidism for the last 8 years and takes 125 mcg Liothyronine. Recently a friend in Hong Kong where she lives as suggested sea moss supplement and she feels she has more energy and less brain fog. I’m concerned about the iodine in it but other components
59Blue
in
Thyroid UK
8 months ago
ERFA with added iodine
Hiya.I have recently sourced a batch of ERFA via a private pharmacy, but after reading the fine print on the bottle, I have noticed it also contains 0.2 % of iodine. I thought this would be counterproductive, as iodine supplementation is not recommended with hypothyroidism? I am now concerned about
Hiya.I have recently sourced a batch of ERFA via a private pharmacy, but after reading the fine print on the bottle, I have noticed it also contains 0.2 % of iodine. I thought this would be counterproductive, as iodine supplementation is not recommended with hypothyroidism? I am now concerned about
Hidden
in
Thyroid UK
4 months ago
to take iodine or not ?
hi i have hashimotos and once again I have been looking for a way to reduce the tpo antibodies, im seeing conflicting reults some people said it lowers the tpo but other say not to take iodine any advice ?
hi i have hashimotos and once again I have been looking for a way to reduce the tpo antibodies, im seeing conflicting reults some people said it lowers the tpo but other say not to take iodine any advice ?
ali2341
in
Thyroid UK
3 months ago
Alternatively this information may be helpful
Hi here is some information that might be useful black strap molasses for iron Moringa for iron and sleep with many nutrients Mangosteen for anxiety and depression Paw paw capsules for anxiety Okra Greek vegetable with many health benefits and helps the liver and kidneys how to possibly get off thyroxine
Hi here is some information that might be useful black strap molasses for iron Moringa for iron and sleep with many nutrients Mangosteen for anxiety and depression Paw paw capsules for anxiety Okra Greek vegetable with many health benefits and helps the liver and kidneys how to possibly get off thyroxine
RLSSCARER
in
Restless Legs Syndrome
8 months ago
T3 Trial and feeling worse
Medichecks end Jan 2024 Hypothyroid (after RAI in c2004) Spent 2023 improving folate, B12, Vit D although ferritin still poor. Came off PPIs and now take Gaviscon twice daily. Gastritis issues ongoing though. Officially a poor converter (dud DIO2) so really wanted to try T3 Dec 2023 - Trial of T3
Medichecks end Jan 2024 Hypothyroid (after RAI in c2004) Spent 2023 improving folate, B12, Vit D although ferritin still poor. Came off PPIs and now take Gaviscon twice daily. Gastritis issues ongoing though. Officially a poor converter (dud DIO2) so really wanted to try T3 Dec 2023 - Trial of T3
Rambling9
in
Thyroid UK
4 months ago
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