New to the group

September 23, 2007

In a message dated 9/23/07 1:36:25 AM, Buttonjo@... writes:

>

> No, not all people have to have 2nd surgeries when they have the first one

> young. I had to have a 2nd because the first one was too short, the spine

> continued to progress around it.

>

> Same thing happened with my son. First surgery at 16, 2nd surgery at 19 due

to failed fusion and continued curvature above and below the rod including

upper curve progression back to where it had been before the surgery which fused

the lower curve and (temporarily) improved the upper curve as a result. He

is 22 now and wasn't even diagnosed with scoliosis until he was 15. While

the shorter fusion was totally successful at the time, it didn't end up being

the case. For many and hopefully most cases, the shorter fusion is successful.

It seems to depend on the 'determination' of the scoliosis to keep curving.

Even in hindsight, I would have chosen the shorter fusion because of its

high success rate and its leaving most of the spine in tact.

**************************************

See what's new at http://www.aol.com

October 8, 2007

No, I don't think all people have to have the surgery in order to

correct scoliosis. I am a good example. I cannot have the surgery

because of another health issue I suffer from. My only method of

treatment is via yoga stretching that I will have to do for the rest of

my life. I have tried a bracing program and I did not like it.

October 10, 2007

Hello isso (or tabbeyo???) - Welcome to our Forum and I hope you do get all the help and support you need.

Have you yet found the information that we carry in our FILES section and LINKS. I would recommend that you go there and see if there are any documents there that will help you. We do try to cover everything but as you will see from the long list, we still add more information every week as and when we come across it. Don't worry about having too much of this information right now, take each document one at a time and take the steps you will probably need to take one at a time too - that way, you won't become confused .

What we would like from you though are your last thyroid blood results. These are yours by right and all you need to do is ask the receptionist to let you have a copy. We need the figures and the reference range for each test. We also need to know what medication you are taking and the doses and have you been prescribed Levothyroxine. When was this and has the dose been raised since you first started taking it?. It would help also to know what symptoms you are experiencing that won't go away.

It is a helpful thing to take your temperature for a week BEFORE getting out of bed and before drinking anything. Keep a note of this each day. Normal temperature is 98.4 degrees F. You may find that you have a temperature less than 97.8 (or probably much lower). Can you remember when you first started feeling unwell?

Sorry for all the questions, but we can't really help very much without knowing some answers . We are all here to help each other, so please don't be afraid to ask as many questions as you feel necessary .

Luv - Sheila

>> I would like to say hi to everyone I am new to the group, well I joined > last week and have been doing a lot of reading so I thought it was time > I Introduced myself. I have found your website very interesting and > useful. I have so much to say but at the moment my head is swimming > with it all. I would also like advice at some point. After spending > eleven days in hospital last September I was dignoised with an > underactive thyroid + Hashimoto autoimmune (think I got that right). I > feel like I have been to hell and still havent come back. I do find it > all very confusing at times but was very pleased when I come across > TPA.Think I better stop for now because otherwise I will go on and on. > Thank you for letting me join the group. >

October 10, 2007

The first thing that I would do is dump the simvastatin from my regime, they are dreadful pills and if you are given the right treatment for your thyroid problems, your cholesterol will come down naturally. I had a cholesterol reading of over 10 in 2000 but refused to take their statins, tried to bring it down with diet and supplements but never got below 7.5 - they prescribed again in April 2005 shortly after I was diagnosed, I still refused to take them though and earlier this year I had a cholesterol test and it was an excellent 4.2 - I just looked at my GP and said, I knew it would be now that I am on pretty much optimum thyroid meds.

Luv nne

medication I am on is:Levothyroxine 50 mcg x 1 in the morningPerindopril 4 mg x 1 in the morningsimvastatin 20 mg x 1 at night (was 40 but demanded to be put down to 20)betahistine Hydrochloride 16 mg x3 aday.Symbicort asthma pumpsalbutamol asthma pump

October 10, 2007

hi Sheila, Thank you for replying. It all started about two years ago I had very high cholesterol and generally not feeling well this went on for a year with my health deteriorating. I ended up in hospital for 11 days in September last year due to having really bad palpitations and shortness of breath. I was treated for a heart attack (which I now know I didn't have) , on the tenth day after they had taken bloods everyday, they found the thyroid problem with the bloods. The consultant said "we will get you started on thyroxine and you will be fine in a few days." I was put on high blood pressure medication while in hospital but i believe my blood pressure was only high due to the fact that they scared the life out of me by treating me for an heart attack. Then they discharged me but wanted to do a heart stress test so I had to wait to start the thyroxine. I started taking the thyroxine (50 mcg) I didn't understand what was happening to me it was never explained to me what a underactive thyroid was. I got a phone call from my GPs receptionist to say that a doctor had phoned them from the hospital to say that once I have had the stress heart test I was to start on 50 mcg of thyroxine and that i had hashimotos auto immune and if need be, sent to a specialist. I am still waiting to feel better and be normal my GP refuses to send me to a thyroid specialist because he keeps saying to me that my bloods are normal. I am still on 50 mcg thyroxine, its got to the stage that I am questioning myself now. A few months ago I was getting really low once or twice a month and become really tearful, he kept saying to me I am depressed and he wanted to give me something for it but I told him I wasn't depressed. I did start to try and educate myself I got a book on thyroid problems it has helped me to understand a little of what is going on but i feel I still got a long way to go. I have started to read the information in the Files section and find them very helpful. I did ask for my blood results and was told I have to put it in writing and say why I wanted them and at the time I felt so deflated I didn't do the letter. with all that's going on with me sometimes I feel it is a struggle to keep fighting the doctor so to speak. its also got to the stage that i feel the relationship between the doctor and myself is getting worse. I went to see the doctor yet again yesterday to tell him how i was feeling and begged him to refer me to a specialist and once again he said no because my bloods was normal I ask him to explain to me why I am getting all the symptoms still. he said its not the thyroid. I then ask him what was causing me to get bad dizzy spells and lost of balance he said you are under the ENT for that. He became annoyed with me when I ask him to take my blood pressure to see if it was the blood pressure medication causing the dizzyness. The outcome was that i get my bloods taken, first available appointment two weeks time. I have been given an hearing aid because I have lost some of my hearing in my left ear. I am also under the neurology clinic and I am due to have a brain scan due to aching and weakness on the left side. I also have days where my brain feels foggy and I just can not function the way I would like to. I have learnt to cope with it the best I can because i am in full time work but sometimes it just gets to much and some days i just about have the energy to think let a lone work and i do worry how much longer I can continue working like this.

medication I am on is:

Levothyroxine 50 mcg x 1 in the morning

Perindopril 4 mg x 1 in the morning

simvastatin 20 mg x 1 at night (was 40 but demanded to be put down to 20)

betahistine Hydrochloride 16 mg x3 aday.

Symbicort asthma pump

salbutamol asthma pumpapart from the symptoms I have mentioned above I also feel anxious and panicky from time to time. my digestive system plays up sometimes to.

oh god i am so sorry for going on feel like I have written a book but it feels good to write to people that are going to understand what I am going through. i hope you can understand what I have written because not very good at compiling letters at the moment. I promise not to write this much again.

thanks you .

thyroid treatment From: sheilaturner@...Date: Wed, 10 Oct 2007 07:27:57 +0000Subject: Re: new to the group

Hello isso (or tabbeyo???) - Welcome to our Forum and I hope you do get all the help and support you need. Have you yet found the information that we carry in our FILES section and LINKS. I would recommend that you go there and see if there are any documents there that will help you. We do try to cover everything but as you will see from the long list, we still add more information every week as and when we come across it. Don't worry about having too much of this information right now, take each document one at a time and take the steps you will probably need to take one at a time too - that way, you won't become confused .What we would like from you though are your last thyroid blood results. These are yours by right and all you need to do is ask the receptionist to let you have a copy. We need the figures and the reference range for each test. We also need to know what medication you are taking and the doses and have you been prescribed Levothyroxine. When was this and has the dose been raised since you first started taking it?. It would help also to know what symptoms you are experiencing that won't go away.It is a helpful thing to take your temperature for a week BEFORE getting out of bed and before drinking anything. Keep a note of this each day. Normal temperature is 98.4 degrees F. You may find that you have a temperature less than 97.8 (or probably much lower). Can you remember when you first started feeling unwell?Sorry for all the questions, but we can't really help very much without knowing some answers . We are all here to help each other, so please don't be afraid to ask as many questions as you feel necessary .Luv - Sheila>> I would like to say hi to everyone I am new to the group, well I joined > last week and have been doing a lot of reading so I thought it was time > I Introduced myself. I have found your website very interesting and > useful. I have so much to say but at the moment my head is swimming > with it all. I would also like advice at some point. After spending > eleven days in hospital last September I was dignoised with an > underactive thyroid + Hashimoto autoimmune (think I got that right). I > feel like I have been to hell and still havent come back. I do find it > all very confusing at times but was very pleased when I come across > TPA.Think I better stop for now because otherwise I will go on and on. > Thank you for letting me join the group. > Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it!

October 10, 2007

There are many who live with untreated scoliosis..I, myself, being

one.

Some are not candidates for surgical intervention and some chose not

to have it. Each of us is different so the path is different.

I read where you are in a lot of pain...have you tried muscle

relaxants or other medications for relief?

I too do yoga and stretching and recumbent cycling. I am finding that

my food selections affect the way I feel too..as does staying

hydrated and receiving good sleep and resting periods.

Take care, be patient and persistent..

Ama

Adult_Untreated_Scoliosis/

>

> No, I don't think all people have to have the surgery in order to

> correct scoliosis. I am a good example. I cannot have the surgery

> because of another health issue I suffer from. My only method of

> treatment is via yoga stretching that I will have to do for the

rest of

> my life. I have tried a bracing program and I did not like it.

>

October 10, 2007

Hi

....I ended up in hospital for 11 days in September last year due to having really bad palpitations and shortness of breath. I was treated for a heart attack (which I now know I didn't have) , on the tenth day after they had taken bloods everyday, they found the thyroid problem with the bloods. The consultant said "we will get you started on thyroxine and you will be fine in a few days."

You quite probably ended up with palpitations and shortness of breath because you were undiagnosed and therefore untreated for hypothyroidism. Why they rely simply on blood results I don't know, but I guess you were lucky to get a diagnosis. However, I (and I guess many of us) would NOT agree with the consultant. If only....if only....

I was put on high blood pressure medication while in hospital but i believe my blood pressure was only high due to the fact that they scared the life out of me by treating me for an heart attack. Then they discharged me but wanted to do a heart stress test so I had to wait to start the thyroxine. I started taking the thyroxine (50 mcg) I didn't understand what was happening to me it was never explained to me what a underactive thyroid was. I got a phone call from my GPs receptionist to say that a doctor had phoned them from the hospital to say that once I have had the stress heart test I was to start on 50 mcg of thyroxine and that i had hashimotos auto immune and if need be, sent to a specialist. I am still waiting to feel better and be normal my GP refuses to send me to a thyroid specialist because he keeps saying to me that my bloods are normal. I am still on 50 mcg thyroxine, its got to the stage that I am questioning myself now.

Have you had another thyroid function test since they started you on 50 mcgs Thyroxine? If not, you need one immediately. Please ask your GP to test your TSH, your Free T4 (thyroxine) and your Free T3 (triiodotyronine). You also need to get him to test for low Ferritin (stored iron) because it is surprising how many sufferers of hypothyroidism cannot get well with thyroid hormone replacement because their Ferritin is too low. You might also wish to get the 24 hour adrenal salivary test done by NPTech Services. Have a look in our Files and scroll down until you see NPTech Services and this will show you the tests they do and the prices they charge. If your DHERA and Cortisol are out of range, this could be another reason you feel so unwell. You cannot, though, expect Thyroxine to have an immediate effect. Thyroxine has a very long half life and takes at least 6 weeks to get into your body 100%. You might also not be converting the 'inactive' T4 into the 'active' T3. T3 is needed to get into every cell in your body to make it function. This conversion takes place through the liver and this is the reason it is essential for your GP to test for Free T3 to see whether or not this might be a problem.

A few months ago I was getting really low once or twice a month and become really tearful, he kept saying to me I am depressed and he wanted to give me something for it but I told him I wasn't depressed. I did start to try and educate myself I got a book on thyroid problems it has helped me to understand a little of what is going on but i feel I still got a long way to go. I have started to read the information in the Files section and find them very helpful. I did ask for my blood results and was told I have to put it in writing and say why I wanted them and at the time I felt so deflated I didn't do the letter.

One of the best books you could read to educate yourself is the one written by our Patron and Medical Adviser Dr Barry Durrant-Peatfield. He wrote this book for both patients and doctors and gives a thorough and easily understood explanation of what is happening and why and what we can do about it to help regain our normal health. I would highly recommend it. We have a 'lending library' and you can find details of this in our FILES. This enables anybody to borrow certain books which some of our members have kindly agreed to loan out. You can find all the details there. You DO NOT have to give an explanation of why you need your blood results. THESE ARE YOURS BY LAW and every patient has the right to their medical notes and nothing should be hidden from the patient. I would write to your Practice Manager simply stating that you wish to ohave a copy of all your thyroid function tests (and any other blood tests you might need) and that you will be collecting them on such and such a date. Don't let these people try to tell you you cana't have them. You can report them to your local PCT if they insist).

with all that's going on with me sometimes I feel it is a struggle to keep fighting the doctor so to speak. its also got to the stage that i feel the relationship between the doctor and myself is getting worse.

You are not alone and this is one of the reasons I opened Thyroid Patient Advocacy. If people were getting the treatment they needed within the NHS, there would be no reason for all the thyroid support groups (both locally and on the Internet) that there are. We do find the for a lot of members, at the end of the day, they feel the need to take their health into their own hands and that way, they do mainly regain better health than staying with tne NHS and all the distress that causes. If your doctor refuses to work with you, he should be reported. All doctors who are registered with the GMC have to work with their patients and if they refuse, this is another reporting matter. I am not saying he should be reported, that would only cause more distress for you, but just a little reminder about these things in his little ear, just might make him sit up and think. GP's CAN, sadly refuse to refer you to a specialist, but you could remind him that specialists are there for patients who are not regaining their normal health under their GP amongst other reasons.

I went to see the doctor yet again yesterday to tell him how i was feeling and begged him to refer me to a specialist and once again he said no because my bloods was normal I ask him to explain to me why I am getting all the symptoms still. he said its not the thyroid. I then ask him what was causing me to get bad dizzy spells and lost of balance he said you are under the ENT for that. He became annoyed with me when I ask him to take my blood pressure to see if it was the blood pressure medication causing the dizzyness.

I think you might need to write to your Practice Manager about your treatment. Write down all your symptoms, your signs (look at these in our website www.tpa-uk.org.uk and tick off each one you suffer). Write down what you have asked your GP and his responses. Both the GMC and the DoE state categorically that to reach a diagnosis of hypothyroidism you should be given a thorough physical examination - your symptoms and signs should be taken into consideration ALONG with blood tests and these should all be taken into account. Your dizzy spells and loss of balance could be adrenal related or could be that you are not on the right dose of Thyroxine - or you could be suffering some toxicity if the thyroxine is not converting to T3 and it is not being used by your body. I would be tempted to get your Free T3 and 24 hour salivary test done by NPTech Services, because not all labs. will test the Free T3. All not done to save the NHS money, sadly.

The outcome was that i get my bloods taken, first available appointment two weeks time. I have been given an hearing aid because I have lost some of my hearing in my left ear. I am also under the neurology clinic and I am due to have a brain scan due to aching and weakness on the left side. I also have days where my brain feels foggy and I just can not function the way I would like to. I have learnt to cope with it the best I can because i am in full time work but sometimes it just gets to much and some days i just about have the energy to think let a lone work and i do worry how much longer I can continue working like this.

We will try to give you all the help and support you need here . There are many of us who have come through what you are suffering right now, and believe me - there IS light at the end of the tunnel - but sadly, at the moment, there appears little light within the NHS.> > medication I am on is:> Levothyroxine 50 mcg x 1 in the morning> Perindopril 4 mg x 1 in the morning> simvastatin 20 mg x 1 at night (was 40 but demanded to be put down to 20)> betahistine Hydrochloride 16 mg x3 aday.> Symbicort asthma pump> salbutamol asthma pumpapart from the symptoms I have mentioned above I also feel anxious and panicky from time to time. my digestive system plays up sometimes to.

Sadly, many people do NOT do well on prescription BP medication or statins - in fact, I simply hate statins. My husband was put on statins and became worse than he was without them. He had all the BAD effects and had muscle twitches with quite severe pains so we stopped them. He now takes natural CoEnzyme Q10 and Niacin (Vitamin B3) and doctors recommend these are safer and more effective than statins. > > oh god i am so sorry for going on feel like I have written a book but it feels good to write to people that are going to understand what I am going through. i hope you can understand what I have written because not very good at compiling letters at the moment. I promise not to write this much again.

Hey - stop worrying about writing long message and spilling everything out. This is why we are here - where else can you go ? We DO understand what you are going through. The compilation of your message is excellent, and if necessary, please feel free to write as much again any time. You are going to be asking a lot of questions as you there is so much to learn, but take everything one step at a time, because right now - I bet you feel completely over-whelmed.

Have a look at the photograph of me taken 9 years ago for my Passport and then take a look at the one after I had been treated properly and with the right medication. I feel wonderful - but the memories of what I have gone through to get here will never leave me.

> thanks you .

Luv - Sheila> >

October 10, 2007

hi sheila, thank you for the reply it was all helpful. I will write a letter to the doctors for the blood results. I will also ask him to do the blood test you mentioned.

I started the thyroxine (50 mcg) in September 2006. I have had blood test since then but because they come back within the normal range the GP has kept me on 50 mcg thyroxine ever since. All blood test was taken without stopping the thyroxine. So it will be interesting to see my results and what the range is. I am not sure if the TSH, T4, and T3 was done but i will find out. Three questions for you, is T3 & T4 the same has free T3 & T4. is it safe to stop the thyroxine for 24 hours before the blood test I do want to get a correct blood test and if need be I will stop it. Can you take natural supplements while taking thyroxine because I think I read in a book that you cant. I would much prefer to take natural supplements for the blood pressure.

thanks maria.

thyroid treatment From: sheilaturner@...Date: Wed, 10 Oct 2007 16:20:56 +0000Subject: Re: new to the group