Since having a total thyroidectomy in 1992, due to papilary carcinoma and being treated with thyrozine my life has been quite meaningless. Basically I seemed to have lost my enthusiasm, motivation and get up and go. Of course I was treated with cocktails of psychiatric medication which did not help all that much.
On the psychiatric meds off them nothing seemed to change. Finally I reached a point whereby I stopped taking the psychiatric meds. I just accepted myself as being a depressive person. Life stood still. I lost sight of the outgoing person I was before the papilary carcinoma.
By chance I googled thyroid depression a few weeks ago and I came across Thyroid UK site and other mind opening information. My God what a revelation......I found HOPE!
After much research I have decided I want to try NDT rather than carry on taking thyroxzine.
In my haste I made an appointment with a private endocrinologist in Manchester. The appointment is for tomorrow 2 February Oilat 6pm.
I NEED SOME HELP PLEASE
Can anyone suggest what questions I should be asking this endocrinologist doc regarding tests and NDT treatment? My head is in fog most of the time.
The thing is I have learnt after making the rash appointment with this private endo doc that I can get tests and NDT through sources offered by Thyroid UK . God knows how grateful I am to this site and all the wonderful people who share their experience, strength that gives me a newfound hope. Thank you all.
To be honest with the information I now have I don't want diagnosis, tests or treatment from the private endocrinologist doc. But I have paid for consultation with him which was expensive and I going to see him just for the sake of it.
So as it not being a total waste of my time, can anyone help me to propose some questions to put to the endo that may help me and others on this site.
I can't thank you all enough
With gratitude jean
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DizzyD
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Don't waste your time on expensive private consults. Chances are he will not prescribe ndt - and if he does, it will cost a fortune from mainstream pharmacies. You can buy it online without a prescription and self treat. Alternatively, you can get some private gps to prescribe ndt - but why bother unless you have loads of money to throw around.
I get mine online and have my own test about once or twice a year. Works for me. Most establishments endos and gps are surplus to requirements anyway.
Thank you for your swift reply. Really helped me make the final decision.....I cancelled private consult.
Now it's down to living in the solution and switching from levothyroxzine to ndt.
I have taken the liberty to ask you some questions based on self treatment. I hope you don't mind. Love your comment, that most endos and GPS are surplus to requirement anyway. My sentiments exactly.
Where can I purchase ndt?
Do I have to have TSH test done prior to taking ndt?
Considering my TSH levels have be suppressed to low or undetectable levels where would I find out about the correct dosage?
Can you recommend where to get tests done?
So sorry for bombarding you with no many questions. I just so excited and hopeful. God it feels so good taking responsibility for my own thyroid problem.
Well done. I have been down that road, spending hundreds on private consults. The establishment is the establishment, NHS or private. You can get tests done via blue horizon. Genova went downhill. Blue horizon has a confusing website but you can get tests without gp. You need t3,t4,tsh and antibodies. T3 is the most important to get in range. Have the test before you start meds so you have a benchmark. We are not allowed to say where we get ndt but I will send you a private message. Congratulations on taking control and breaking free from Nhs tyranny
You can and will feel better.
Well, you don't have to go. You could cancel. I think there'd probably be a cancellation fee though.
Hey heirloomapple thank you for your swift reply. Much appreciated. I acted on your sound suggestion and cancelled appointment with private endocrinologist.
Why didn't I think of that? Blame it on my foggy head haha
Very interesting to me how you get on as had same thing ,thyroidectomy due to cancer,as did my brother and he is on 275mcg levothyroxine and a shadow of formerself and I am on 175mcg levothtroxine and feel lack lustre.Did you have radioactive ablation as we did.Bro blames everything on being nuked as he puts it .I ws so relieved to live beyond the cancer hadn't really thought about how worn I have become.
Please let me know how you get on in the coming months so can advise my bro as he is desperately down and Gp just says he should put up with it.
Good luck and really hope it improves life for you and feedback can help my bro.
Oh dear I replied to your post with a long message then I lost it....the msg that is not the plot.haha!
I keep it simple now and short. Yes I did have radioactive ablation for thyroid cancer. It's standard procedure for thyroid cancer. The very word radioactive terrifies me.
A few years after detection of cancer and treatment with 250mg thyrozine, I saw a program on tv called, "The Children of Chernobyl" most of the children ended up having thyroid cancer.
It was one of those light bulb moments and I came to realize that I may have got thyroid cancer because I drank water from a stream in Wales that had the highest concentration levels of radioactive fallout in the the UK after Chernobyl.
Trivial info I know, but yep we can be nuked in more ways than one. Especially by some endos and GPS who simply want to ignore us, label us as neurotic or whatever. For me enough is enough. I am taking responsibly for my thyroid treatment now and switching from thyrozine to NDT. IT May not work but then again it may work and I will feel better. I have nothing of value to loose but a lot to gain. I am on a journey of recovery and discovery.
When the pupil is ready the teacher will appear! We are both teacher and pupil at any given time. I have learnt at lot from this site and other relevant research involving the thyroid and adrenals. With my foggy brain I am slow but determined to learn and move in the direction of my choice and not that of my endo or Gp
I will inform them that I am planning to treat myself with NDT....
watch this space!
We are individuals, human beings who are suffering. It's natural to want to feel better and not "just put up with it"!
I suggest you do more research regarding thyroid and treatment then you can make an informed decision as to which path you want to take regarding your brother.
Yeah he is down any info you put to him May not go in if his mind is closed off. Believe me as you keep planting the seeds his mind will open.
Whoops said I was going to keep it short haha! Think my brain is coming to life cos of passion I feel for recovery of myself and my fellow man.
Good for you, it always makes me happy when I see people taking control. My problem was I trusted doctors for too long; once I figured out how corrupt the NHS is, i was staggered. The NHS actually encourages GPs to be corrupt eg financial incentives for meds that we don't need as opposed to ones we do need.
Anyhow i just wish i had taken control earlier - i only "Woke up" in 2012 and started self medicating at the end of 2012.
As i always say - there is no time to waste - we NEVER get back the years the NHS steals from us and no one is every held accountable for the staggering negligence.
Remember it can take a while to settle on a dose, it took me around 4 months. I sent you a private message which I hope is informative
Ohhhh I am really ignorant when it comes to technology and I have no idea how to gain access to your private message. Can't blame that on my brain fog or can I?
You suggested I get T4 and T3 tests done including antibodies as a baseline record. Do I do this through a private laboratory or with my gp? If nhs taken out of the equation I assume it's best to get them done using the online lab you suggested.(Can't remember their name)
I have to be honest I would have no idea how to interpret the lab results.
Oooh I have not trusted nhs for years. Grateful to them for detecting thyroid cancer but even when they did they left me with it for 18 mths and the cancer spread to my lymph glands in neck. They are a business at end of day. Rant over!!!!
It really does feel amazing taking control. Thank you for your help and support.....it's priceless am so grateful. Been so out of touch with my power and emotions. Eureka I am getting them back.
Now how do I get to your private message? Can't wait to read it.
I was nuked 6 weeks after op my brother only had it 12Years yep years after op after finding out from me that most folk are meant to.
We used to live in Wales holidaying in Anglesey ,beautiful place and people ,didn't know about the fallout though 8 (
I will try and find as much simplistic info as poss and attempt some suggestions to him.Feel the try it first myself might end up being the only answer though.As I have Systemic Lupus with liver,spleen,heart and kidneys affected,Rheumatoid Arthritis,Sjogrens,Eds,raynauds ,fibromyalgia,and Crps I will have to give a verbal kicking to my specialists to agree due to other multiple meds.
Not going to give up as even 1 level better is worth it .
Good for you....taking control. I have Hashimotos disease, and feel dreadful. Am on 175 mcg of Levothyroxine, and my GP refuses every time to take my antibodies, she says I don't need them taken. I was diagnosed by a private consultant, but went back to NHS and the consultant there and he told me i was to go away and enjoy life, as there was nothing wrong with me. My antibodies were 691, and I am meant to have 0.
Everything is so expensive and I am afraid to go alone with NDT. I live in Northern Ireland and feel isolated
Don't be afraid. Many of us here do very well on ndt and have never looked back. It is more affordable than you think, especially if you buy the 1000 tab jar. Please don't waste your life away.
Thank you for your post. Yes it's about taking control of my treatment. I do not know anything about Hashimotos disease apart from it being related to thyroid.
I totally understand and hear you regarding being in fear about going it alone with NDT. Courage is fear said its prayers. You are not alone believe me. I only came to this site yesterday and the help and support I have received is priceless. I was a lost soul in despair and isolated, living in fear before I found this site. Now I feel empowered and determined to do things my way and not endos or GPS way. But this is me and you are you an individual in your own right.
As human beings who are suffering, be it mentally, emotionally, physically and spiritually it is natural to seek a way to feel better.
My advice to you is to do lots of research, make notes, communicate on this site, ask questions.....stay connected! Take it easy. Give yourself time The more you learn the more your mind will open up to the possibilities of taking control of your disease and you will come to live in the solution rather than stay stuck in the problem. The answers are in you....they just have to be woken up. At end of day you will know what is best for YOU!
Voice your fears and concerns to people who understand you.
For me I know I am taking a risk self treating myself with NDT But I have to take that risk if I don't I will never know if it works for me or not.
Be vigilant ,cautious and astute.....but do your research.
I plan to let my endo and gp know that I intend to take NDT. I hope they will monitor my progress or decline with the usual tests which will help expense. If they totally reject me.........! So be it.
Finance is a problem and you have to be realistic as to what you can afford. NDT very cheap but as for test prices I not to sure.
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