Graves' Disease
So I had another encounter with the UK National Health Service (NHS) today. It’s all turning out to be one big jigsaw puzzle, i.e. the more appointments I go to with different specialists, the more I come to understand how the NHS works.
It seems one of the NHS’ favourite games is called “Refer Your Patient Elsewhere”. The way the game is played is very similar to Passing the Parcel, which I’m sure many of you will remember from your days of youth. All that’s needed is for any Nurse/Doctor/GP to kick the game off, and this can be done by getting a relevant Registrar/PA to write a letter requesting for another GP/Specialist to have a look at their patient. That GP/Specialist will then continue on with referring the patient on to someone else, and that keeps the ball rolling. Advanced players have even been known to use a higher-skilled technique of referring their patient to 2 or more other GPs/Specialists at the same time. This practice effectively saves the player a lot of time, by addressing receiving GPs/Specialists on a CC-ed letter, instead of individual ones.
In a nutshell, this game ensures that any treatment you need to receive will take up to a number of months to get sorted (if you’re lucky). And if you’re unlucky, you may end up like a patient that was in the same waiting room as I was this afternoon, who discovered that someone in the game made a boo boo, because she received her appointment schedule before she was officially referred on to her specialist. Poor little old lady though; her daughter took the day off work to drive her to the hospital, and they arrived to find that not only did she not have a proper referred appointment, the specialist she was meant to see wasn’t even on duty!
Anyhow, other peoples’ botched games aside, I had my first consultation with a Radioiodine specialist. The department normally deals with treatment for cancer patients, but it turns out they also deal with small-time non-cancer patients like myself. The specialist talked me though my condition (Graves’ Disease), the treatment procedure, risks, effects, effectiveness, etc. etc. etc.
For those interested in medical facts..
1) Graves' Disease (the leading cause of hyperthyroidism) represents a basic defect in the immune system; causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).
[Comments: The Endocrinologist I last saw diagnosed my right eye as slightly affected by the abovementioned condition, but the Radioiodine specialist I saw today claimed that it wasn’t evident. Both have played the “Referral” game and I will have everything properly confirmed by an Ophthalmologist at some point. Meanwhile, the skin on the front of my lower leg seems fine.]
2) Some Facts:
Graves' Disease occurs in less that 1/4 of 1% of the population.
Graves' Disease is more prevalent among females than males.
Graves' Disease usually occurs in middle age, but also occurs in children and adolescents.
Graves' Disease is not curable, but is a completely treatable disease
[Comments: Knowing that it is not curable makes me feel lots better. Not.]
3) Treatment Options:
A) Anti-thyroid drugs which inhibit production or conversion of the active thyroid hormone;
B) Radioactive iodine (I-131), which destroys part or all of the thyroid gland and renders it incapable of overproducing thyroid hormone; or
C) Subtotal thyroidectomy, in which a surgeon removes most of the thyroid gland and renders it incapable of overproducing thyroid hormone.
The first treatment is about 20-30% effective, and the latter two treatments result in about a 90-95% remission rate of the disease. In a few cases, the treatments must be repeated. In all cases, lifetime follow-up laboratory studies must be done, and in almost all cases, lifetime replacement thyroid hormone must be taken.
[Comments: I’ve tried option (A) for 3 years now with no success, and have been told t avoid option (C) because it is too risky. Hence, I will be undergoing option (B) soon, which will hopefully result in something positive. Why do I get the feeling from the last paragraph though, that I’ll be frequenting hospitals a lot for the rest of my life?]
Anyways, my job for now is to wait for the Radioiodine specialist to sort out her referrals to another consultant who will guide me through more details on the treatment before actually getting treated at some hospital far far away. So far, there’s been some pre-mention about having to sleep on a separate bed from Tim for 2-3 weeks after the treatment.. And to stay away from babies and children.. And to not sit next to the same person for more than an hour in case I emanate my radioactivity to him/her..
I’ll be like Spidey, wouldn’t I!!
It seems one of the NHS’ favourite games is called “Refer Your Patient Elsewhere”. The way the game is played is very similar to Passing the Parcel, which I’m sure many of you will remember from your days of youth. All that’s needed is for any Nurse/Doctor/GP to kick the game off, and this can be done by getting a relevant Registrar/PA to write a letter requesting for another GP/Specialist to have a look at their patient. That GP/Specialist will then continue on with referring the patient on to someone else, and that keeps the ball rolling. Advanced players have even been known to use a higher-skilled technique of referring their patient to 2 or more other GPs/Specialists at the same time. This practice effectively saves the player a lot of time, by addressing receiving GPs/Specialists on a CC-ed letter, instead of individual ones.
In a nutshell, this game ensures that any treatment you need to receive will take up to a number of months to get sorted (if you’re lucky). And if you’re unlucky, you may end up like a patient that was in the same waiting room as I was this afternoon, who discovered that someone in the game made a boo boo, because she received her appointment schedule before she was officially referred on to her specialist. Poor little old lady though; her daughter took the day off work to drive her to the hospital, and they arrived to find that not only did she not have a proper referred appointment, the specialist she was meant to see wasn’t even on duty!
Anyhow, other peoples’ botched games aside, I had my first consultation with a Radioiodine specialist. The department normally deals with treatment for cancer patients, but it turns out they also deal with small-time non-cancer patients like myself. The specialist talked me though my condition (Graves’ Disease), the treatment procedure, risks, effects, effectiveness, etc. etc. etc.
For those interested in medical facts..
1) Graves' Disease (the leading cause of hyperthyroidism) represents a basic defect in the immune system; causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).
[Comments: The Endocrinologist I last saw diagnosed my right eye as slightly affected by the abovementioned condition, but the Radioiodine specialist I saw today claimed that it wasn’t evident. Both have played the “Referral” game and I will have everything properly confirmed by an Ophthalmologist at some point. Meanwhile, the skin on the front of my lower leg seems fine.]
2) Some Facts:
Graves' Disease occurs in less that 1/4 of 1% of the population.
Graves' Disease is more prevalent among females than males.
Graves' Disease usually occurs in middle age, but also occurs in children and adolescents.
Graves' Disease is not curable, but is a completely treatable disease
[Comments: Knowing that it is not curable makes me feel lots better. Not.]
3) Treatment Options:
A) Anti-thyroid drugs which inhibit production or conversion of the active thyroid hormone;
B) Radioactive iodine (I-131), which destroys part or all of the thyroid gland and renders it incapable of overproducing thyroid hormone; or
C) Subtotal thyroidectomy, in which a surgeon removes most of the thyroid gland and renders it incapable of overproducing thyroid hormone.
The first treatment is about 20-30% effective, and the latter two treatments result in about a 90-95% remission rate of the disease. In a few cases, the treatments must be repeated. In all cases, lifetime follow-up laboratory studies must be done, and in almost all cases, lifetime replacement thyroid hormone must be taken.
[Comments: I’ve tried option (A) for 3 years now with no success, and have been told t avoid option (C) because it is too risky. Hence, I will be undergoing option (B) soon, which will hopefully result in something positive. Why do I get the feeling from the last paragraph though, that I’ll be frequenting hospitals a lot for the rest of my life?]
Anyways, my job for now is to wait for the Radioiodine specialist to sort out her referrals to another consultant who will guide me through more details on the treatment before actually getting treated at some hospital far far away. So far, there’s been some pre-mention about having to sleep on a separate bed from Tim for 2-3 weeks after the treatment.. And to stay away from babies and children.. And to not sit next to the same person for more than an hour in case I emanate my radioactivity to him/her..
I’ll be like Spidey, wouldn’t I!!