Endo appointment today (By way of a 14 month up-date....)

[Billyboy2u]

I’ve my appointment today. Only waited a month and under the current conditions think that’s a good response time. In-between I’ve seen my GP twice. Both times taking my bloods and treating my swollen legs and feet that’s just about all gone now

[shaws Administrator]

Good luck for your appointment and am glad GP was successful in enabling your feet and legs to become less swollen.

[Billyboy2u in reply to shaws]

Wow hit with a bit of a shock at the hospital. Endo talks about looking for a long term approach “just because I’ve rep-lapsed”. It’s surgery or iodine. Either way I don’t fancy losing my little thyroid.

I asked what if I bc don’t want it out. He said it’s up to me but what we’re finding is the pills don’t work bc as good the longer it goes on.

Anyhow I’ve got 6 months to have a think about it.

[shaws Administrator in reply to Billyboy2u]

I think I'd wait myself - if we rush into things we might well wish we hadn't.

There's not much good in rushing into a decision made by a doctor when all considerations may not have been considered. After all, he is working on a 'maybe' for the future.

Not all of us want to make a decision that would mean we cannot change our mind after an operation. We should be allowed to dwell on our decision for a while - don't be rushed into a decision.

Many on this forum who've had their thyroid gland removed regret the decision. They will respond when they read your message.

The fact too that our 'old fashioned and original thyroid hormone replacements' which saved thousands of lives from 1892 onwards (before that we just died) were withdrawn without any notice to patients, or even considered that those who felt well on NDT were not included in the final decision to remove it from being prescribed. They also withdrew T3 (the active thyroid hormone) without notice and caused mayhem amongst those who were well upon it.

It is quite clear - and we don't expect all Endocrinologists to have their thyroid glands removed - that they have no clue as to how very unwell patients can be when options have also been removed from being prescribed. There's no going back so everything has to be considered with thought and careful decisions.

[pennyannie in reply to Billyboy2u]

Hey there again :

I think the pills do work irrespective of how long you are them :

I think this comment shows a total lack of understanding of Graves and suggesting that primary hypothyroid caused by a medical intervention is an " easier fix " nonsense.

All this drastic action does is switch you out of hospital management and back into your doctors surgery, and dependant on your doctor's understanding of how to treat hypothyroidism.

Graves is an autoimmune disease that is stress and anxiety driven - loosing your thyroid doesn't mean you loose the Graves - all you loose is this major gland and now with primary hypothyroidism, needing another mix of medications for the rest of your life, which may or may not, restore your well being and health.

After initial diagnosis manstrean medical do not seem to pay much attention to the level of antibody interaction and this is essential. If your antibodies are still high there is little point looking for " remission " - antibodies will lower in their own time, and it's a waiting game. I'm guessing pressure on mainstream medical dictates their treatment plan rather than managing you until your antibodies calm down and your body resets itself.

If you are reasonable well on the AT drug stay put as recent research out of Korea is showing that the longer the patient stays on the AT medication the better the chance of finding remission.

The first phase of this disease can be anything from 4-11 years dependant on which Graves antibodies are dominant with some patients finding resolution in a 2-5 year period which now seems a reasonable length of time for treatment with continuous AT drugs.

I'm sorry - I don't understand this cut and paste thing - I've paper copies but both these papers were printed on here recently - maybe you can use the search engine to find them - sorry :

[Billyboy2u in reply to pennyannie]

Many thanks for that and I’ll look up all the information I can.

I spoke to the junior doctor first who told me flat out, as I had told him I don’t want my thyroid removed or burn out, the pills will stop working in time so that does limit your options. But it is your choice in the end.

I’ve read a lot already and there are a lot who regret having it taken out. As I told the endo when he came in I can’t understand why I can’t stay on the meds. I’ve went two years without an episode then this time it was in my view a very small upset where I sat about for a few days without any energy after that and being before to going on carbinazole I started feeling better myself.

I’m still in shock to tell you the truth. My body’s been very good to me over the years and although 64 look 45-50 so other people say. I honestly don’t recognise myself anymore from a young kid. I never catch colds never have the flu. Not ad any broken bones. So yeh. Thought my body would right itself. That’s why I’m against of having it removed. It does so many important things for you going over active in my body I think couldn’t be helped.

Stress and not being able to work are my killers. It kills me waiting for something to happen. Run down with doing nothing.

But as said thank you I don’t want to lose my little butterfly. My GP has been great too. Whenever he’s not sure he rings the endo. Keeping me waiting but I don’t care as it shows he at least trying to help me.

[pennyannie in reply to Billyboy2u]

Hey there - are you in the Uk - I can't remember ?

[Billyboy2u in reply to pennyannie]

Yes. Newcastle upon Tyne.

[pennyannie in reply to Billyboy2u]

So, I think curently, the NHS allocate a 15-18 month window for treatment with the AT drugs irrespective of where your antibodies are at any point in time after diagnosis.

There has always been pressure put on hospitals to reduce O/P waiting times and read a while ago of O/P waiting times being target driven - so that seems to imply to me that it's a question of moving people through the system as quickly as possible.

The current situation must be very difficult to manage - and in my area normal service has not been restored either in hospital nor GP's surgery - and the back log of patient's waiting for even a diagnosis growing by the hour.

The other issue is however once deemed primary hypothyroid you are discharged out of the hospital and back to your doctor and there is just one thyroid hormone replacement treatment on the table - T4 Levothyroxine :

A fully functioning thyroid would be supporting you with T1. T2 calcitonin + around 10 mcg T3 + around 100 mcg T4 and not everybody does well on just T4 :

Living without a thyroid is no fun, living with Graves and no thyroid is a reality :

I know it's difficult - you have identified your stress as not being able to work - ok - I totally get that, as I would dearly love to be gainfully employed for a few hours a day.

I'm 73 and worked and paid into the " pot ' for 40 odd years -

I'm with Graves post RAI thyroid ablation in 2005 and now I manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.

I became very unwell around 8 years after RAI thyroid ablation and have been refused both Natural Desiccated Thyroid and T3 by my doctor and CCG area.

I now self medicate to have any sort of " life " going forward.

I self medicate with full spectrum thyroid hormone replacement and am much improved but need to finance this myself from my single woman's state pension.

[Billyboy2u in reply to pennyannie]

Wow. My heart goes out to you. What a terrible place to be in. I would hate to be there. Don’t get me wrong. The feeling I get is very mild. So much so I don’t notice it. My partner does.

In my case it’s as if I’ve ran a marathon and couldn’t be bothered to cross the line. That’s the extent of my illness. The other stuff I consider as mental that I should be able to put right.

Hope things turn around and you find that magic fix. You never know with modern outlook on this things may improve.

[pennyannie in reply to Billyboy2u]

I guess you are referring to my profile page -and of course everyone would hate being where I was, and I just thought the NHS would have been able to help me through this period but there were no answers, nor solutions though I found out later all I was dealing with were known symptoms for some Graves patients afer RAI thyroid ablation.

Having been refused anything other than T4 - thyroid hormone replacement and housebound I started self medicating with full spectrum thyroid hormone replcement and I am much improved and have back my independance though at a slightly reduced level.

The mental aspects of Graves are not well understood in the mainstream medical but Graves can impact you in many ways including your physical, mental, emotional, psychological and spiritual well being.

If I haven't mentioned it before you might like to dip into Elaine Moore's Graves Foundation website for a fuller understanding of all things Graves, autoimmune and thyroid.

[helvella Administrator in reply to Billyboy2u]

Suggest you have at least a brief look at this post I made a while ago:

The longer the antithyroid drug is used, the lower the relapse rate in Graves' disease: a retrospective multicenter cohort study in Korea

healthunlocked.com/thyroidu...

[pennyannie in reply to helvella]

Thank you - getting frustrated and angry with my inablity - " need a neice " :

to show me :

Just feel 7 all over again and not 73 - struggling to read and write and feeling humiliated :

[helvella Administrator in reply to pennyannie]

It really is quite simple - usually. But can be ridiculously difficult to explain! Especially remotely using only text.

What sort of machine do you use? A tablet? A phone? A computer with a mouse?

You could try the description here:

computerhope.com/issues/ch0...

[pennyannie in reply to helvella]

No please - thank you - I'm glazing over just thinking of what I've got - my neice set it up for me - and that's as far I got understanding anything :

The easier I'm told this is - the harder it is for me to grasp anything - it's just me - I'll get there when I see a neice with a little patience, and "do it ' in front of me :

[Billyboy2u in reply to pennyannie]

Lol. I’m lucky. I grew up with Windows and beta tested the first windows operating system. A good few years before it came out.

[Billyboy2u in reply to helvella]

I use all. Phone for quickness surface pro for research