Comments for Simon Waters http://waters.me personal website of Simon Waters Thu, 17 May 2012 17:46:25 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on UK Thyroid Information by Simon Waters http://waters.me/uk-thyroid-information/comment-page-1/#comment-23153 Simon Waters Thu, 17 May 2012 17:46:25 +0000 http://waters.me/?page_id=9#comment-23153 Both the British Thyroid Foundation and UK Thyroid operate networks of volunteers to have a rep local to you with local information. The BTF reps probably won't directly recommend someone, but they will be able to share stories they have heard, and advise on how the system work - which is often the hard bit. In the first place I would discuss with your GP, as they again often have informed views about local consultants. If you find no joy, get back to me, as I have family close to you several members of which have thyroid issues. Both the British Thyroid Foundation and UK Thyroid operate networks of volunteers to have a rep local to you with local information.

The BTF reps probably won’t directly recommend someone, but they will be able to share stories they have heard, and advise on how the system work – which is often the hard bit.

In the first place I would discuss with your GP, as they again often have informed views about local consultants.

If you find no joy, get back to me, as I have family close to you several members of which have thyroid issues.

]]> Comment on My Graves by Elayne http://waters.me/my-graves/comment-page-2/#comment-23152 Elayne Thu, 17 May 2012 17:27:34 +0000 http://waters.me/?page_id=6#comment-23152 Hi Simon having spent 2 years being told by an Endo that although I was Hyperthyroid I actually had Hashimotos Disease. I was put on PTU but only had them for 18 weeks after which the Endo stopped them and told me I was in remission and discharged from the hospital. That was April 2011 by December 2011 I was so ill but doctor treated me for a virus for 4 weeks, she then did a blood test and told me I was overactive. I seen an Endo in February 2012, who said I should have the RAI treatment but I declined unfortunately I couldn't get another appointment with her until the end of June. In the meantime the GP was upping my medication everytime I had a blood test until I could just about get out of bed. I asked to see another Endo which I did today, he has told me I have Graves disease and that the only treatment for it is RAI or surgery that medication won't work. When I refused either he agreed to monitor blood tests for 18 weeks and adjust my medication by phone. He has discharged me from the hospital and will only see me if I agree to treatment. All of this has left me feeling very confused and then I found your blog and realised I was not alone. There are so many support groups if you are Hypo but and they mention Hyper occasionally. Reading this and everyones responses has made me realise I am not alone. Thank you and everyone for your stories they have helped me I don't feel so alone noe. Hi Simon

having spent 2 years being told by an Endo that although I was Hyperthyroid I actually had Hashimotos Disease. I was put on PTU but only had them for 18 weeks after which the Endo stopped them and told me I was in remission and discharged from the hospital. That was April 2011 by December 2011 I was so ill but doctor treated me for a virus for 4 weeks, she then did a blood test and told me I was overactive. I seen an Endo in February 2012, who said I should have the RAI treatment but I declined unfortunately I couldn’t get another appointment with her until the end of June. In the meantime the GP was upping my medication everytime I had a blood test until I could just about get out of bed. I asked to see another Endo which I did today, he has told me I have Graves disease and that the only treatment for it is RAI or surgery that medication won’t work. When I refused either he agreed to monitor blood tests for 18 weeks and adjust my medication by phone. He has discharged me from the hospital and will only see me if I agree to treatment.

All of this has left me feeling very confused and then I found your blog and realised I was not alone. There are so many support groups if you are Hypo but and they mention Hyper occasionally. Reading this and everyones responses has made me realise I am not alone. Thank you and everyone for your stories they have helped me I don’t feel so alone noe.

]]> Comment on UK Thyroid Information by sandra http://waters.me/uk-thyroid-information/comment-page-1/#comment-23151 sandra Thu, 17 May 2012 16:59:06 +0000 http://waters.me/?page_id=9#comment-23151 Hi Simon can you recommend a good, sympathetic endocrinologist for a second opinion?My daughter age 20 has been suffering from hashimotos thyroiditis for several years now and is still not well. I need someone who is willing to check her completely. I live in Greater London/ Bucks/ Herts borders but am happy to travel anywhere. Thanks. Hi Simon can you recommend a good, sympathetic endocrinologist for a second opinion?My daughter age 20 has been suffering from hashimotos thyroiditis for several years now and is still not well. I need someone who is willing to check her completely. I live in Greater London/ Bucks/ Herts borders but am happy to travel anywhere. Thanks.

]]> Comment on My Graves by Simon Waters http://waters.me/my-graves/comment-page-2/#comment-23148 Simon Waters Wed, 16 May 2012 07:39:15 +0000 http://waters.me/?page_id=6#comment-23148 Anne, as you'll have gathered headaches were my first and only symptom. I've seen one paper suggesting 60% of patients experience headaches before treatment, but I guess it depends how significant it is compared to other symptoms. I now think I may have had sinus pain rather than a headache. The antibody tests come in various types. Whilst little is 100% certain, if you have positive TSI, or TRAb test (antibodies that cause Graves') and hyperthyroidism I think it is reasonable to say you have Graves' disease. I've met one person who had these results and also had another complaint causing an overactive thyroid, and I've heard of the odd thyroid cancer patient with similar. But what I believe is happening there is that having Graves' doesn't exclude having other thyroid problems, and indeed there is evidence it may make them more common. In the UK it is more common to measure TPO antibodies, which are a marker for autoimmune thyroid disease, but may not distinguish Graves' from overactivity caused by Hashimoto's disease (which is usually an underactive thyroid condition). TPO antibodies also occur in a large number of apparently healthy women (~15%), and is associated with increased risk of later thyroid problems, so probably reflects a mild form of autoimmune thyroid disease. Anne,

as you’ll have gathered headaches were my first and only symptom.

I’ve seen one paper suggesting 60% of patients experience headaches before treatment, but I guess it depends how significant it is compared to other symptoms. I now think I may have had sinus pain rather than a headache.

The antibody tests come in various types. Whilst little is 100% certain, if you have positive TSI, or TRAb test (antibodies that cause Graves’) and hyperthyroidism I think it is reasonable to say you have Graves’ disease.

I’ve met one person who had these results and also had another complaint causing an overactive thyroid, and I’ve heard of the odd thyroid cancer patient with similar. But what I believe is happening there is that having Graves’ doesn’t exclude having other thyroid problems, and indeed there is evidence it may make them more common.

In the UK it is more common to measure TPO antibodies, which are a marker for autoimmune thyroid disease, but may not distinguish Graves’ from overactivity caused by Hashimoto’s disease (which is usually an underactive thyroid condition). TPO antibodies also occur in a large number of apparently healthy women (~15%), and is associated with increased risk of later thyroid problems, so probably reflects a mild form of autoimmune thyroid disease.

]]> Comment on My Graves by Anne http://waters.me/my-graves/comment-page-2/#comment-23145 Anne Tue, 15 May 2012 21:59:36 +0000 http://waters.me/?page_id=6#comment-23145 Wow, so much information...! I (35, female, hyperthyroidism since 15 March 2012) have two questions: 1. Are the headaches a symptom of Graves or a consequence of the overactive thyroid? My endocrinologist said the headaches that I'd been having for months (no other symptoms until I suddenly crashed with all the other classic symptoms) weren't a common symptom. 2. How were you all diagnosed with Graves? My endo said it cannot be diagnosed for sure, it's more an assumption.. he did test for certain antibodies, but he said the blood tests don't offer certainty. I am feeling well at the moment, after weeks of severe fatigue and mood swings. I take 10mg carbimazole/day. My endo acted as if Graves was no big deal at all, but now that I'm reading all these stories, I start to worry... Good luck to everyone and thank you for sharing your stories! Wow, so much information…! I (35, female, hyperthyroidism since 15 March 2012) have two questions:
1. Are the headaches a symptom of Graves or a consequence of the overactive thyroid? My endocrinologist said the headaches that I’d been having for months (no other symptoms until I suddenly crashed with all the other classic symptoms) weren’t a common symptom.
2. How were you all diagnosed with Graves? My endo said it cannot be diagnosed for sure, it’s more an assumption.. he did test for certain antibodies, but he said the blood tests don’t offer certainty.
I am feeling well at the moment, after weeks of severe fatigue and mood swings. I take 10mg carbimazole/day. My endo acted as if Graves was no big deal at all, but now that I’m reading all these stories, I start to worry…
Good luck to everyone and thank you for sharing your stories!

]]> Comment on My Graves by Kay http://waters.me/my-graves/comment-page-2/#comment-23137 Kay Mon, 14 May 2012 20:36:56 +0000 http://waters.me/?page_id=6#comment-23137 Hi, I was diagnosed with Graves disease 2 years ago but thankfully am currently in remission, although it is early days as I am less than 1 year off treatment. Leanne - it sounds from your symptoms as if you might be under active, if you can't get hold of your specialist then maybe speak to your GP and see if they will do a blood test for you? Anne - my opinion, for what it is worth, is to consider the radioactive iodine treatment; I suspect that this is what I will choose if I relapse. There is a small failure rate but most people become under active within 6 months and go onto thyroxine. The only other down side of the radiation is that you have to be prepared for a few weeks/months of not feeling great whilst you get on the right dose of thyroxine, but this won't last forever. The advantage of surgery seems to be that you can go straight onto thyroxine and you avoid the potential of feeling rubbish with under active symptoms until your thyroxine dose is right. But it does have more risks (albeit small) of damaging your parathyroid glands which messes up your calcium metabolism and damage to the nerves that supply your voice box (which is irreversible and potentially serious). If I do ever have to have surgery for whatever reason though, I will definitely opt for a total thyroidectomy rather than subtotal as at least with a total thyroidectomy there is no chance of going overactive again (short of being on too much thyroxine). I appreciate that once you have had either treatment you are substituting one chronic illness for another, as you will need to be on thyroxine for life, but it seems easier to control levels on thyroxine than it can be on anti-thyroid drugs, and personally I would rather try and manage on thyroxine (I have a number of friends who feel very well on thyroxine) than put up with the side effects that I had from long term carbimazole. Good luck to you all, hope you start feeling well soon. Hi,
I was diagnosed with Graves disease 2 years ago but thankfully am currently in remission, although it is early days as I am less than 1 year off treatment.
Leanne – it sounds from your symptoms as if you might be under active, if you can’t get hold of your specialist then maybe speak to your GP and see if they will do a blood test for you?
Anne – my opinion, for what it is worth, is to consider the radioactive iodine treatment; I suspect that this is what I will choose if I relapse. There is a small failure rate but most people become under active within 6 months and go onto thyroxine. The only other down side of the radiation is that you have to be prepared for a few weeks/months of not feeling great whilst you get on the right dose of thyroxine, but this won’t last forever.
The advantage of surgery seems to be that you can go straight onto thyroxine and you avoid the potential of feeling rubbish with under active symptoms until your thyroxine dose is right. But it does have more risks (albeit small) of damaging your parathyroid glands which messes up your calcium metabolism and damage to the nerves that supply your voice box (which is irreversible and potentially serious). If I do ever have to have surgery for whatever reason though, I will definitely opt for a total thyroidectomy rather than subtotal as at least with a total thyroidectomy there is no chance of going overactive again (short of being on too much thyroxine).
I appreciate that once you have had either treatment you are substituting one chronic illness for another, as you will need to be on thyroxine for life, but it seems easier to control levels on thyroxine than it can be on anti-thyroid drugs, and personally I would rather try and manage on thyroxine (I have a number of friends who feel very well on thyroxine) than put up with the side effects that I had from long term carbimazole.
Good luck to you all, hope you start feeling well soon.

]]> Comment on My Graves by Anne http://waters.me/my-graves/comment-page-2/#comment-23130 Anne Thu, 10 May 2012 21:05:12 +0000 http://waters.me/?page_id=6#comment-23130 Hi I have read these comments and cried. It is hard to explain to someone how awful and desperate you feel but to read that others feel as I do gives me some crumb of comfort. I am in my third episode of Hyperthyroidism, Graves, and am in a mess. I have been off work for the last two months, I had a thyroid storm which I believe was triggered by having a Yellow Fever innoculation. Its funny, people on here talk about the headaches, the crushing, 'helmet style' headaches, but when you mention it to the medical profession they don't associate it with the disease at all??? I am currently on carbimazole and beta blockers, but the symptoms are still there and my levels are still rising. I am considering the Radiotherapy treatment and am seeing my consultant next week. Reading here though I'm not sure whether I'd be better to have surgery?? and I read that it's possible for it to reccurr afterwards?? I had assumed that if your thyroid is removed/ killed off, you would just be put onto thyroxin and that would be it?? Any advice re surgery v radiotherapy treatment? Hi
I have read these comments and cried. It is hard to explain to someone how awful and desperate you feel but to read that others feel as I do gives me some crumb of comfort. I am in my third episode of Hyperthyroidism, Graves, and am in a mess.
I have been off work for the last two months, I had a thyroid storm which I believe was triggered by having a Yellow Fever innoculation. Its funny, people on here talk about the headaches, the crushing, ‘helmet style’ headaches, but when you mention it to the medical profession they don’t associate it with the disease at all???
I am currently on carbimazole and beta blockers, but the symptoms are still there and my levels are still rising. I am considering the Radiotherapy treatment and am seeing my consultant next week. Reading here though I’m not sure whether I’d be better to have surgery?? and I read that it’s possible for it to reccurr afterwards?? I had assumed that if your thyroid is removed/ killed off, you would just be put onto thyroxin and that would be it??
Any advice re surgery v radiotherapy treatment?

]]> Comment on My Graves by Ann Fisher http://waters.me/my-graves/comment-page-2/#comment-23127 Ann Fisher Wed, 09 May 2012 16:35:38 +0000 http://waters.me/?page_id=6#comment-23127 I have just had a call from my doctor confirming I have graves, I went to the doctors last week with terrible headaches, blood tests were taken, and the result is Graves. I have just read what the systems are and I have most of them! I thought it was my age, (49). So tomorrow I am going to the doctors first thing in the morning and he is going to tell me what my options are. One hour ago I had never heard of Graves disease. I have just had a call from my doctor confirming I have graves, I went to the doctors last week with terrible headaches, blood tests were taken, and the result is Graves. I have just read what the systems are and I have most of them! I thought it was my age, (49).
So tomorrow I am going to the doctors first thing in the morning and he is going to tell me what my options are. One hour ago I had never heard of Graves disease.

]]> Comment on My Graves by Leanne moss http://waters.me/my-graves/comment-page-2/#comment-23125 Leanne moss Mon, 07 May 2012 10:45:58 +0000 http://waters.me/?page_id=6#comment-23125 Wanting your opinion. Was diagnosed with graves dec 10. Usual symptoms, hair loss, sweats, shakes, palpitations, weight loss, frequent bowel movement, insomnia etc. endo put me on ptu. Developed thyroid eye disease may 11. Was put on prednisilone, but dosage was not working so started methyl prednisilone in dec 11, and still receiving treatment fortnightly. Eyes seemed to have settled down from treatment and I have my thyroid checked at hospital. Now 2 and half weeks ago my t4 and tsh was apparently normal. Can I just add I have been on ptu now since dec 10. And have been on 50mg a day for quite some time. But over the past few months I have put on over a stone. I eat healthy exercise every day. Yet I am still gaining weight. Over the past few weeks my alopecia has returned, I am cold all the time, joints aching, headaches, always tired. I can't get hold of my specialist, this is why I am turning to you. Do you think I have gone under active? It's the only explanation I can think of for all my symptoms. I appreciate your advice. Wanting your opinion.

Was diagnosed with graves dec 10. Usual symptoms, hair loss, sweats, shakes, palpitations, weight loss, frequent bowel movement, insomnia etc. endo put me on ptu. Developed thyroid eye disease may 11. Was put on prednisilone, but dosage was not working so started methyl prednisilone in dec 11, and still receiving treatment fortnightly. Eyes seemed to have settled down from treatment and I have my thyroid checked at hospital. Now 2 and half weeks ago my t4 and tsh was apparently normal. Can I just add I have been on ptu now since dec 10. And have been on 50mg a day for quite some time. But over the past few months I have put on over a stone. I eat healthy exercise every day. Yet I am still gaining weight. Over the past few weeks my alopecia has returned, I am cold all the time, joints aching, headaches, always tired. I can’t get hold of my specialist, this is why I am turning to you. Do you think I have gone under active? It’s the only explanation I can think of for all my symptoms. I appreciate your advice.

]]> Comment on UK Thyroid Information by Denise Fleming http://waters.me/uk-thyroid-information/comment-page-1/#comment-23123 Denise Fleming Sun, 06 May 2012 17:26:25 +0000 http://waters.me/?page_id=9#comment-23123 Dear Simon: As a thyroid advocate and person of influence, I would like to ask you to read this thyroid advocacy petition and to share it with your members, asking people to sign. Change is needed and we need more signatures! Millions of people are suffering from undiagnosed thyroid conditions because the current practice of doctors failing to stay current in thyroid testing. The petition will be sent to the American College of Endocrinology and the American Board of Internal Medicine as well as four other well-known endocrinology organizations. Sixteen doctors later in 3 different states, I finally received a diagnosis. And there are millions who share my story. A crying shame! Thank you for sharing this information. Facebook is a powerful communication tool, too! Petition link is here: http://www.change.org/petitions/board-certified-endocrinologists-should-be-proficient-in-and-mandated-to-be-current-on-thyroid-disorders-treatment?utm_medium=facebook&utm_source=share_petition&utm_term=share_page_mobile Sincerely, Denise Fleming Dear Simon:
As a thyroid advocate and person of influence, I would like to ask you to read this thyroid advocacy petition and to share it with your members, asking people to sign. Change is needed and we need more signatures! Millions of people are suffering from undiagnosed thyroid conditions because the current practice of doctors failing to stay current in thyroid testing. The petition will be sent to the American College of Endocrinology and the American Board of Internal Medicine as well as four other well-known endocrinology organizations. Sixteen doctors later in 3 different states, I finally received a diagnosis. And there are millions who share my story. A crying shame!

Thank you for sharing this information. Facebook is a powerful communication tool, too!

Petition link is here:
http://www.change.org/petitions/board-certified-endocrinologists-should-be-proficient-in-and-mandated-to-be-current-on-thyroid-disorders-treatment?utm_medium=facebook&utm_source=share_petition&utm_term=share_page_mobile

Sincerely,
Denise Fleming

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