This awful thyroid journey 😠

[birkie]

Hi everyone 💓

Firstly I hope everyone has a lovely Christmas and New year 💓 as this year is coming to a close I've been reflecting on my journey since full thyroidectomy in may 2019, and boy as it been some journey and by that I mean the medication we are put on to return us to euthyroid.

I've had my ups and downs with my GP and endo who just seem to treat thyroid patients as people who have a small cold😠, I've been on T4 and T3 trying to acquire the correct tablets which as turned out unfortunately to be T3, and I say unfortunately because it's so hard to obtain them!!!

Again after being on roma T3 which I managed to get back on after a disastrous GP took me off them!! My pharmacy are again saying they can't obtain them😠 I've been on 3 boxes at 28 tablets in each box and have 8 left, I was due to have my thyroid blood done this week ( no appointments now until after Christmas 😠) the pharmacist rang me on Tuesday to say she is trying every outlet to obtain them, I received a parcel from the pharmacy yesterday... T3 mercury pharma contains lactose 🤦 I gave them back to the driver totally discussed as I'd made it very clear it was roma T3 lactose free.

Are we who suffer from thyroid conditions and need these tables for our health taken seriously!! I think not...I have found GPS uncaring, endos couldn't care less, no one in the medical profession seem to care about us who need this medication 😠 I honestly feel like I'm going out of my mind🤯 NO ONE CARES!! I get the impression we don't count, but surely we're just as important as a diabetic who needs insulin, a heart attack survivor who needs there medication, i could go on!!!.

So her I am waiting on an appointment after Christmas for my thyroid bloods, again running out of the very drug I need to keep me euthyroid 😠.

Santa all I want for Christmas is my bloody thyroid medication 🎅

I think after these Christmas holidays I may with the help from my son write to my MP and complain of the treatment we received, because I've just about had it, talk about stressed out!!😠😠😠

[RedApple]

birkie ' I get the impression we don't count, but surely we're just as important as a diabetic who needs insulin, a heart attack survivor who needs there medication, i could go on!!!.'

Ah but the difference between us and those you mention, is that we only have to deal with radically reduced quality of life, or at worst, a very long drawn out death, whereas they might suddenly drop dead on the GPs doormat. Longevity is what matters, not quality. No gold stars for giving us a good quality of life, only for stopping us from sudden death.

[birkie in reply to RedApple]

That's just how I feel RedApple and how I'm being treated by the medical profession, "well as long as your plodding on with no real quality of life, does it really matter!!!😠 that's the impression I get whenever I question anything about my thyroid condition, I actually don't have a thyroid but get treated as I'm sure many of us do as actually having a thyroid just take the meds like a good girl...I've asked my endos..and GP why do you treat me as if I have a thyroid? One example my mother who was hypo no thyroidectomy went right on T4, treated as such!!! My GP couldn't understand when we have full thyroidectomy the loop is broken, we have no hormone's, I understand that hypo can be the same in the fact once the thyroid is burned out it may not produce any thyroid hormones ,but my GP is so ill informed she even said I was probably producing thyroid hormones!!! I said well unless it's grown back I find that statement wierd😆 this was because my T3 was 5.3 and my TSH was 0.05 on T3 medication 🤦it's a scandal we are treated like this, I'd sooner have a better quality of life than this one....one endo recently told me "well at least your being treated" but I'm sorry you don't feel well but there's little I can do for you" no 💩 Sherlock 😠😠😠😠😠

[shaws in reply to birkie]

I suspect there are many more GPs who are unknowledgeable about anything to do with the thyroid gland and that's why we are on this forum.

One of my GPs phoned to tell me that T3 twas too high and T4 too low. I said 'but I take T3 only so T3 will be high and T4 low because I take none. He then went on to state that T3 converted to T4! I said 'no - it is the other way around.

Even when my TSH was 100 I was told I had no problems.

No wonder why so many hypo patients finds it difficult to improve their health.

[birkie in reply to shaws]

Hi shaws❤️

Absolutely!!! I was so shocked last week I had a mammogram, the lady doing the procedure asked if I'd had any surgery in the neck or breast area, I mentioned my thyroidectomy.

To my suprise she also mentioned she'd also had a thyroidectomy, we had a brief discussion you know the drill... What meds are you on.. How do you feel.. I briefly told her my horror story, she said she was struggling, like me she had graves but also had thyroid cancer.

I told her about our site, that she could go on and read other people's story's with thyroid conditions, and I mentioned how helpful this site has been to many people struggling with this condition, she then asked if it was a medical site.. In that we're there medical professionals on it.. Well in my opinion I think most of us on here know more than the so called pros.. But I said no we don't have endos, ect just very knowledgeable people, she then told me those sites should not be trusted, and only to use medical professional sites🤣.. I'd given her our site name but she scrunch it up and threw it in the bin.... Her loss I thought 🤷‍♀️ incidentally the surgeon who performed my thyroidectomy is the Head of our breast screening clinic at our hospital, she sees him everyday..🙄

[shaws in reply to birkie]

As the saying goes birkie "you can take the horse to the river but you cannot force him to drink".

I've had more negatives from the the people who are supposed to be knowledgeable/exeperts (my GP) but have had more sense from the unprofessionals who actually have a 'condition' but who have found their way to good health once again

[pennyannie in reply to birkie]

Hey there Birkie

I'm with RAI thyroid ablation and it's my understanding is this toxic substance, amongst other things, burns out the thyroid in situ and yes the HPT axis, the Hypothalamus - Pituitary - Thyroid - feedback loop is broken as there is no thyroid there to complete this circuit -and why one must be dosed and monitored on Free T3 and Free T4 blood test levels.

Also if with Graves Disease a TSH reading is a very unreliable measure of anything as we can have Graves antibodies sitting on our receptor sites for possibly - forever.

Initially these Graves antibodies drove down the TSH and the reason why we were found with high over range T3 and T4 levels - there is no way of removing these antibodies from our receptor sites - but now the thyroid isn't there so there is no natural own thyroid hormone production to be driven up into over range T3 and T4 readings as we are now on ' manual ' and need to fuel up everyday for ourselves.

[birkie in reply to pennyannie]

Hi pennyannie❤️

Interesting about the antibodies, after my full thyroidectomy my surgeon told me the antibodies can linger for between 3/6 months which could give my hyper symptoms for a while, personally I now don't believe a word these professionals say 🤷‍♀️.. But it is interesting if that was indeed the case why are we not given a antibodie blood test after say 3/6 months, just to see if they have gone? I do believe they can stay with us for life.. And I've mentioned this to my endo as my parathyroid glands have now gone over active, I asked if my antibodies could have caused this.. Much in the same way as did my thyroid, by me attacking my thyroid, wait for it... Endos answer.. Em no... 🤦‍♀️🤦‍♀️🤣🤣🤣

[pennyannie in reply to birkie]

As I understand things Graves is an autoimmune disease for which there is no treatment nor cure.

All the anti thyroid drug does is ' buy you time ' and the NHS generally allocate a window of around 15-18 months with the AT drug while they wait to see if our immune system calms down enough to come off the AT drug and hope this was just a blip and everything goes back to normal.

However for some of us it isn't such a quick fix and I was told at my very first endo appointment that even though I was well on the Carbimazole it was too dangerous to stay on long term and I was due to have RAI the following year, which was totally safe.

I didn't know any different back in 2004 and was totally compliant and only started my own research in around 2015 when I became increasingly ill but no one in the NHS was listening or supporting me - details on my profile page.

My initial research was with Elaine Moore's first book. then this forum and Dr Peatfield's first ( I think ) book .

Graves is for life and it tends to wax and wane but once your haven't a thyroid I understand this symptoms ' only chronic ' and not ' life threatening ' and that's meant to be ' ok then ' !!!

elaine-moore.com

Quite why RAI is still the first and likely only treatment offered is absolutely disgraceful and knowing of what we know now of the possibly links to cancer etc I simply do not understand how this is still considered in a ' health care ' system; ncbi.nlm.nih.gov/pubmed/306...

pubmed.ncbi.nlm.nih.gov/338... - not sure the NHS have picked up on this research paper yet.

[birkie in reply to pennyannie]

I couldn't have RAI as my thyroid was toxic and I didn't respond to AT drugs.. I went into thyroid storm, and my only option was total thyroidectomy, as my surgeon said its easier to treat a hypo patient than a hyper one.. 🤷‍♀️ It seems if your bloods T3, T4 TSH are in what the nhs consider normal range then you must be doing cartwheels down the street 🤣 they the endos and GPS have no concep of how thyroid levels work.. I asked one endo just this Aug.. When we are born do we all have the same levels of thyroid hormones" meaning is this the norm you professionals work by, because anyone with a brain would know our bodies find there own levels which make us feel well, as I said to the endo if we took each others blood when I was well (before my thyroid went nuts) our thyroid levels would undoubtedly be different, they don't like these kinds of questions 🙄.. And she bypassed it by going on to my thyroid meds 🤣 they are like politicians never a straight answer 🙄

[Jazzw]

It epitomises everything that’s wrong with “paint by numbers” medicine, doesn’t it? An analogue version of “computer says no”.

The results show everything’s fine… yes well, those blood test results were never designed for adjusting medication levels, they were designed for diagnosing the disorder in the first place. Only partially useful for prescribing. But these doctors have never been taught that. They don’t know.

It feels rather like everything’s falling apart around our ears right now.

[SlowDragon Administrator]

insist GP give you extra prescription to get two months in advance of needing it

Explain in writing to GP (and copy practice manager in too) …..that this is ongoing issue…..each month impossible to get essential daily medication from pharmacy

Would they leave a diabetic patient without insulin

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

I popped in to my surgery to complain about the pharmacy obtaining the T3 and that 28 tablets are of no use, as you said I need at least 2 months supply, but got met with receptionist who says no appointments for blood thyroid tests till after Christmas, and take the tablet issue up with the gp after Christmas, 🤷‍♀️I'm still waiting on the gp responding to the report the private surgeon sent to him stating I need further blood tests, a 24hr calcium urine test, and a pet chlorine scan, receptionist said no report as come through yet🤦‍♀️ eventho I have the copy report in my e mails... As the private surgeon said to me.. "please change your gp as this surgery is doing you no favours... I will be looking into moving after the new year 👍

But new development just received 28🙄 roma T3 tablets about 15 minutes ago🙌 so that lady as done a Stella job in getting them to me... Thank goodness, I can now get my thyroid bloods done without gaps in my meds... 🥳

[SlowDragon Administrator in reply to birkie]

Brilliant news

Suggest you print out copy of email from consultation and deliver it by hand to surgery

[Batty1]

Sadly once they take your thyroid and your levels become “wonderful” the doctors throw you away like trash and any issues you have just get ignored. Hope you get your meds sorted out fast considering you have no thyroid.