.... I hardly dare say it.... towards a plan of action.
So here it is!.... I have mentioned it enough already!.... phase one of my plan of action.... preparing the ground before writing to my Doctor.
This plan has formulated in my mind thanks to comments received through this blog, and acquired knowledge.
Detailed below is the letter I submitted to TPA-UK (Thyroid Patient Advocacy). It has been included on the TPA-UK Yahoo Group forum.
My name is Robert and I have Hypothyroidism. Please help me with a plan of action for 2011.
First of all I would like to say a big thank you for all the work you do for those of us suffering with Hypothyroidism. It is incredible the work you and your colleagues do at TPA-UK.
I contacted you by email at the end of July for some initial advice. I have joined the TPA-UK forum in Yahoo Groups and subscribed to the automated email digest. There is so much information out there and I look at every digest received. As yet I do not have the confidence to contribute to the forum, in time I hope this will change and I can play a more active role in the TPA-UK community.
You mentioned that you had read my blog, I hope you find it “enjoyable” and will continue to follow my story. Since that first email I have finished documenting my treatment to date and continue to update the blog with day to day details of my struggle to get well. I have received too many comments to my blog that mention adrenals and T3 for it to be a coincidence.
So I need a plan of action.
I am not well and I struggle to manage the day to day details of my life, let alone exploring treatment options to find the way forward. Despite this, during 2010, I have continued to make slow progress towards formulating a plan of action. This is where I hope you can help me. I need to set out a step by step plan to follow, and not move on to the next step until the current one has been completed. One thing I have managed to retain throughout all of this is my patience so I will have no problem sticking to a strict plan of action. After all if I follow a plan, and it is successful, my general well-being and quality of life will surely improve over the next 12 months.
As you will know from my blog, I was diagnosed with Hypothyroidism in 2002, and since that time have been treated with synthetic T4 levothyroxine. I have been on my current dose of 125mcg for 6 weeks now, so I am still in the adjusting phase, it seems to take me forever to adjust to a new dose.
The problem I have is that it would appear my only option for the future is to “go it alone” and self medicate, which really is a last resort! Before doing this I intend to write a detailed letter to my Doctor outlining my findings and my intentions for my future treatment. This will include numerous appendices that I have acquired in my quest for answers, many in fact from the TPA website. I will ask my Doctor to reply, and if the treatment I ask for is not to be given, the reasons for this in writing. I want to have my Doctor on my side more than I seem able to verbalise, but if this is not possible then I really will have no option other than to “go it alone”.
There is a pattern emerging in my quest to get well: a problem that needs to be overcome results in new, seemingly insurmountable, problems being uncovered. The problem created as a consequence of my long-term ill health is that my finances are as poorly as me. I “live” at the mercy of the Welfare Benefits system. There is no way I can afford to pay for medication/tests or to be treated privately. Are there any charities out there that help people like me? I am extremely worried that my quality of life will be determined by my Doctor's reluctance to explore treatment options that are “outside the box”.
I think I have a clear picture in my mind of my treatment options but I am struggling to formulate a concise plan of action. Can you please help me with this. I will be forever thankful if you could advise me what action I need to take and in what order. If I can provide this information to my Doctor then perhaps I will have a chance. I will detail below what I think I need to do.
- Have an adrenal function test. I think I have “adrenal insufficiency”.
- Have a ReverseT3 blood test to determine if I am converting T4 into T3 efficiently.
- Is it possible to determine whether I am allergic to synthetic T4 tablets?
How do I get my Doctor to agree that these tests are absolutely crucial to my future treatment? Then, once the above tests have been completed and the results assessed I can move on to the next step: my treatment options, and which one is right for me.
- Treating “adrenal insufficiency” if necessary. I have no idea what this involves.
- Treatment with hypo-allergenic synthetic T4 and how to get my Doctor to prescribe this medication, or,
- Supplementing my synthetic T4 with synthetic T3. I need to know how to determine the correct dosage of T4 and T3, or,
- Treatment with synthetic T3 only. What dosage is required, when to take, and how to get my Doctor to prescribe this medication, or,
- Treatment with Natural Desiccated Thyroid (NDT?). What dosage is required and how to get my Doctor to prescribe this medication.
- Any other supplements that will help me live with Hypothyroidism.
It's hard to believe I'm sure, but this letter has taken me more than two weeks to write! I am experiencing a prolonged period of “brain fog” whilst my body is adjusting to the new dosage of synthetic T4, lucky me! I hope this letter demonstrates my determination to get better and illustrates the amount of thought I have given to the issue of my health, and is not too muddled!
I am gradually beginning to accept that my life with Hypothyroidism is going to be a lifelong journey with many battles along the way. I have also learnt that my life and health can be so much better than it is now. This is down to the online support community I have encountered. All in all I am further ahead at the end of 2010 than I was at the beginning, this can only be seen as progress, and I am thankful for that!
It is my hope, that with your help, 2011 can be the most significant year to date in my journey through life with Hypothyroidism.
My very best wishes, Robert.
I have already received a reply from my very own "guardian angel" at TPA-UK.... the very next day!.... incredible!.... with great advice and knowledge shared.... this was appreciated so very much.... thank you.
During the next week I hope to prepare a letter for my Doctor.... which I will post on this blog.... hopefully you will be able to follow this process with me.... and continue to be a part of my journey and share in my.... joy.... success.... frustration.... and.... whisper it.... progress towards a better quality of life!
Do I dare to dream?
Good plan! I buy Isocort (desiccated adrenal) on line to treat adrenal insufficiency and I buy T3 only from mymexicandrugstore.mx. My doc supports this, but I started out on my own until I could get in to see her. It's just a way of getting it cheaply in my case. From everything I've heard about thyroid treatment in the UK, I don't see where you have a huge choice. Even natural thyroid can be purchased on line without a prescription. http://www.Nutri-Meds.com/thyroid_supplements_s/33.htm. It's not supposed to be as effective as prescribed thyroid, but it's bound to be better than T4.
ReplyDeleteYou can order a test yourself for adrenal insufficiency if you google it. It's a saliva test you can mail in.
Ditch the synthetic T4 as soon as you can.
Congratulations Robert, on deciding to take a stand! This is your first step to recovery and you WILL get there eventually even if it feels like you never will right now. I was in a very similar position in December 2009 and I have come such a long way since then and so will you.
ReplyDeleteI remember what it was like to feel shy about posting in the forums - I joined most of them in Dec 2009 but it took me a number of months to work up the courage to finally post in them - so I know how you feel there. I also know how it feels to desperately want your doctor to accept your new knowledge and treat you accordingly.
In my experience, 2 doctors, my psychiatrist and endocrinologist would not acknowledge what I had learned about treating my condition as being ok, even with the new evidence I presented to them. I got a lot of disagreement - even aggression from some of them. It was extremely upsetting, deflating and frustrating and it made me very mad, especially when I knew what was wrong with me and I desperately wanted to get well as soon as possible. I spent a lot of energy trying to convince them that I was right and that they should help me and a lot of energy at home researching for more proof, trying to work out what I could say to convince them to help me. I was told I was mentally ill by two of them and as for the other two - I just wasn't getting anywhere.
I guess my point is that, even though I hope your doctor is different (don't give up hope on that just yet), try not to let it get you down if he or she isn't, like I did. Try not to waste precious energy trying to convince them of otherwise. I found the best was to tackle it in the end was 'smile and nod' to whatever they said (for me I got things like - you need a psychiatrist! You need anti-psychotics! What you're telling me is wrong! You know nothing! I am an experienced psychiatrist and you will end up in a mental hospital if you don't do what I say! - I kid you not) and act like you're going along with them, knowing that you will not, and leave (sometimes with them thinking you are coming back by making another appointment) and then never go back! It feels really wrong to leave doctors who have known for many years – they’ve been so nice to you in the past - but if they can’t help you, after you do it, it’s actually very empowering!
Try not to waste too much energy on doctors that can't help you - use you limited energy finding a doctor who will. TPA UK will be able to help you find one - they are out there, it is possible. It's like a breath of fresh air when you do... you no longer had to try and prove anything - they already knew everything!
Read about my experience with finding a good doctor here (such a breath of fresh air!):
http://thyroidpatient200000001.wordpress.com/2010/03/18/my-first-2-appointments-with-the-good-thyroid-doctor/
As for money - it can be quite expensive - I was lucky I had help from my parents and even from friends in the end. Do you have anyone that can help you? Whether they be family or friends? If so, ask them for your help - explain to them what you have learned.
Know that you deserve to be helped – you DO DESERVE IT and that you genuinely NEED IT after being sick for so long. When you are better you WILL be able to work again and make your own money again - even pay the people back who helped you if you feel the need. If you have people who can help you then you may be surprised at who willing they are to help after you have explained the situation - write them a letter if that is easier - it's worth a try.
DO dare to dream - pretty soon your dream will become a reality - in fact, it's not a dream - this IS reality! You are sick and there is a way to treat it that works! There probably will be set backs but, with the help of the forums and hopefully your family and friends, you will get there!
BEST of luck with your doctor. Best wishes with your journey to better health. Do keep up posted with your progress!