MY HOPE IS GONE & I AM DONE 😔

[NIKEGIRL]

Sorry. I am feeling quite low and more than a little broken. I have Graves. I have been taking PTU. My T4 vs T3 has never been balanced and my Graves is T3 driven. Apparently 30% of people who have Graves’ disease are T3 thyrotoxic dominant/driven.

For 3-4 months I have been titrating my own PTU drug levels because when I take large doses of PTU I don’t feel like me. I lose my spark. When my T3 is just over the range (7.5) range 2.0-6.0 then my T4 just scrapes into the bottom end of the range (12) range 10-24 or T3 in range (3.5) and T4 way under (5) Never being able to find balance with my numbers. But I promised my GP I would take the 150mg of PTU for 6 weeks to suppress my thyroid to prove to endocrinology I could comply with their protocol. A comment made from Endocrinology in June 2021 that came back to me via my GP back to me was “this process is taking too long”.

Today my T4 was 5 range 10-24 and my T3 was 3.5 range 2.0-6.0. TSH <0.001. How do I feel? Physically bed bound for two days and emotionally/psychologically broken. Not wanting to get out of bed. Not wanting to be around people. It takes too much energy.

My GP has advised me that endocrinology admit they have overshot my PTU dose making me temporarily hypothyrodic. It may take a few days or weeks to feel ok again. Endocrinology have advised the GP there will be no block and replace and that I am to find wellness by balancing my T4 with my T3 naturally using only PTU. I have a formal appt with endocrinology next week to discuss their decisions. I live in New Zealand and we don’t do block and replace here. We don’t prescribe T3 either or NDT.

I worry that at next weeks formal endocrinology appt I will be berated for not sticking to their drug protocol and in essence I have wasted months of time. But in my defence it potentially turns out I was right to not take huge doses of 100mg, 125mg and 150mgs daily as advised and by me titrating my dose based on how I feel has been the right thing to do.

So that’s me. I feel defeated and very done😔

Also worth noting. In my notes today at the hospital it said T4 is irrelevant. Good to know we wasted tax payer money testing that today.

[Cavapoochonowner]

Hello there, Don't really know what to say.I too have graves which is proving difficult to control.I have come to my conclusion that I am fed up of feeling unwell and have opted for a referral to ENT for a thyroidectomy. I know this is my personal choice but I have been on medication now for 3 years and unwell for quite a long time before diagnosis.i am just sending you all my best wishes.My thinking for me is that people come on a forum when they have problems or want advice.There will be people out there having successful treatment with thyroxine only.A person can only cope with so much. We all have our limitations whether it be financial or treatment options offered or just our own ability to cope healthwise. Sometimes we have to look at the options we have and make a choice based on that.That is what I have decided.If it doesn't work out I will have to look at it again until it does.Best wishes to you.

[NIKEGIRL in reply to Cavapoochonowner]

I think it is such a hard disease. The cost physically and emotionally is very high. I think if only I could try some T4 replace and it didn’t work then I would consider my options again but when there is such an imbalance between T3 and T4 and you don’t get offered some replace then I feel I am being treated unfairly. I don’t like that.I don’t want to go through a thyroidectomy and look back and think “what if this and what if that”. If I needed surgery it would be my last option. Remember New Zealand don’t prescribe T3 or NDT. Honestly we seem to do “@@ck @ll”.

[Cavapoochonowner in reply to NIKEGIRL]

Yes you are right, it is very hard.I can understand you not wanting to risk a thyroidectomy without ever having the chance to try thyroxine to see if it suits you.At least I have had the chance to take it and it seems ok for me though no-one can tell if it will suit them forever.Hopefully seeing how unsuccessful large amounts of PTU have been for you and your willingness to try even though it has been so detrimental to your health they may be willing to listen to you . They surely must see that it's not all about numbers and your health and wellbeing are equally as important.Wishing you luck for your appointment.Some people on here seem to get through to a stubborn doctor by suggesting a trial of something( an increase or decrease of medication or a trial of something) maybe that is something you can try.A trial of block and replace to see how your body reacts. You've tried everything else and tried it their way.Maybe you could say you can't consider thyroidectomy unless you've had a chance to see if thyroxine suits you.Grasping at straws I know but sometimes that is what you have to do.Best wishes again.

[NIKEGIRL in reply to Cavapoochonowner]

All I am asking for is the chance to try some T4 to try and find some balance between T4 and T3. I have been advised to not even dare say “block and replace” because New Zealand don’t do this treatment protocol. So even before I go to this appt I am walking on egg shells. I would like the chance of some T4 but today I was told via my GP and ED dr that this is not going to happen. I accept and am aware I will need higher PTU to suppress the dominant T3 in order to combat the conversion of T4 to T3. All I am hearing right now is “No, it’s not your treatment option” so it now begs the question of “Why is not a suitable treatment plan for me?” Also worth noting on the medical notes today was “T4 is irrelevant” patient is “T3 dominant”. There is every chance block and replace may well work and there is every chance it may not work BUT before I commit to an irreversible surgical intervention I would like to try this method. Remember I have been told New Zealand don’t do B&R.

I want to talk about surgery but I want an honest and unbiased talk about success on T4 only treatment after surgery and what happens to the margin of people for whom T4 is not enough. To me this is informed consent. So hard. Hence I’m taking 2 people with me who are watching my life slowly dwindle to bugger all and naff all.

[Cavapoochonowner in reply to NIKEGIRL]

It does seem unbelievable that block and replace is not even considered , as it was given to me as one of my treatment options at my first NHS endo appointment.Also recommended by my opthamologist as the best treatment as I have thyroid eye.I have also read about ladies on here who have succeeded in getting treatment when they took their husband/partners to appointments saying such things like "you'll have to do something , I can't cope with her like this anymore" Scandalous but it seems to do the trick.Sometimes you have to do what you have to do if everything else has failed.Perhaps changing tack might have a different result and if we have to play the part of the little woman to get it so be it.Here's to a successful outcome for you.

[NIKEGIRL in reply to Cavapoochonowner]

My mother is coming. My husband is coming. Both to show solidarity. Both to advocate for me. We r in level 2 so we have to wear masks but also I may only be allowed one support person so I will need to read the hospital letter so as to ascertain numbers who can attend.

If we don’t offer B&R then I don’t see me making headway with that option. So the appt will be about adding some T4. PTU alone based treatment and surgery. Each topic needs to have a discussion on success rates, obstacles, problem solving issues that arise.

I am expecting this person who is supposedly an expert to be able to articulate their objectives and back up their objectives with fact based evidence.

So far the “we have overshot the mark on PTU” is a poor start. But I have to be open and not biased. If I go in with a negative mindset all I will see is the negative outcomes. I need to be open and ready to challenge the information that comes and not accept whatever I am told. Ask for facts to back up their advice and where are these facts gathered from?

So hard to do when your numbers are crap.

[Cavapoochonowner in reply to NIKEGIRL]

Yes I think you are right.I know it will be difficult but to go in with a fresh mind and open attitude is a great idea.Try to take it as it comes and if they say something you don't agree with try not to jump straight in but say something like"Just give me a moment to think about that." I always get caught out like that and can't think straight away. I always find the right answer too late.You are going to do really well with your supporter by your side I think it will really alter the dynamic of the appointment.I am very hopeful for you with this change of tack.Best wishes to you.

[NIKEGIRL in reply to Cavapoochonowner]

You are too kind. I am not hopeful but I am also prepared to be assertive and if I don’t like their tone or language I shall say that to their face. We live in a democracy not a dictatorship. Both parties have the right to be heard. Both parties deserve to be treated with respect. But. I do not have to accept being talked down to nor belittled. I am looking for informed consent and choices. So hard. Easy to write. Hard to carrry out. I will need my head on my shoulders and my two hencemen beside me like crutches as support in case I fall over like the leaning tower of Pisa. A beautiful mastery to behold (that’s me) but not pretty to look at as she leans over (me not coping with the endocrinologist and their views)

[Cavapoochonowner in reply to NIKEGIRL]

A beautiful analogy of you and your supporters.Yes you do have the right to be heard and as I said I'm hopeful the appointment will be totally different with your supporters by your side.They have to take into account your symptoms and how you are feeling mentally and physically well as keeping an eye on numbers.It has to be a balance. You have to have a quality of life.

[NIKEGIRL in reply to Cavapoochonowner]

Couldn’t have said that better. I’m going to sleep now. Not to be rude in anyway. I’ve taken a sleeping tablet and my bed is calling me. Love to u. Chat again

[Cavapoochonowner in reply to NIKEGIRL]

Night night.

[NIKEGIRL in reply to Cavapoochonowner]

You have to do what is right for you. It’s your life to live. No one can live it for you. No one can tell u what is a right or wrong choice. But an informed choice would be good.

[Cavapoochonowner in reply to NIKEGIRL]

Totally agree.

[pennyannie in reply to Cavapoochonowner]

Sending a hug or seven ;

Take good care ;

[Cavapoochonowner in reply to pennyannie]

Maybe this was meant for NIKEGIRL?

[pennyannie in reply to Cavapoochonowner]

No darling - oop's sorry, no offence intended

But I've followed you for most of your journey as well as many others on here and care.

I'm just saddened but totally get it, as the treatment options, skill and knowledge base doesn't seem to be in the system to even understand the true implications of how Graves Disease can affect the patient.

Just looking at print outs of numbers on a computer screen doesn't really say much about the person sitting there least of all the patient's well being .

[Cavapoochonowner in reply to pennyannie]

Thankyou for that.

[pennyannie in reply to Cavapoochonowner]

No worries - whatever you decide, you are not alone with all this, and part of the family on this forum, and you'll find support which ever way you choose to go and where ever the cookie crumbles :

[Cavapoochonowner in reply to pennyannie]

Exactly.

[NIKEGIRL in reply to pennyannie]

I need a rugby team full of muscular men hugging me.

[pennyannie in reply to NIKEGIRL]

Well, all I've got are 2 arms but they are yours for as long as you need them :

[NIKEGIRL in reply to pennyannie]

Your arms have been the most reassuring and tender that one could ever have wished for. Heaven sent my dear Penny is what u are. You know I think the world of you. You’re my thyroid mum and bestie.

[fuchsia-pink]

I'm so sorry, Nikegirl. It sounds very miserable. Can't say anything helpful - but sending you a big hug from the English south coast x

[NIKEGIRL in reply to fuchsia-pink]

Just the support is good to feel. Thank you.

[Hidden]

I know it's not very helpful but I am apoplectic at the injustice. It is simply not fair that you can't even try B&R but also that they won't explain why.

I am raging on your behalf.

I sincerely wish there were something practical I could do to help you.

[NIKEGIRL in reply to Hidden]

Next Thursday is my chance to ask the endocrinologist directly face to face where I will actually have his or her bum on a chair in front of me to listen to their explanation as to why I cannot try some T4.

I am not allowed to mention “block and replace” as it is not a treatment protocol here in New Zealand. My understanding so far is that I am “T3 dominant” and by giving me some T4 it will create more T3 hence make me more thyrotoxic. I understand the mechanics of that.

However I am not going to be able to balance T4 with a dominant T3 ever on PTU alone. The hospitals endocrinologists opinion is that T4 today at 5 range 10-24 was “irrelevant” due to being in range on the T3 at 3.5 range 2.0-6.0.

I understand I will need a larger dose of PTU to suppress the dominant T3 so that when the T4 gets added the T3 can stay in the range.

I struggle to understand why I cannot be given the chance to try. And what I am being told is New Zealand do not do this treatment protocol. However in July my GP said at my next Endo appt we would be discussing adding T4. Now that appears to have changed.

So I am now being told that I am to half my dose of PTU from 150mg to 75mgs and now titrate and find where I am happiest. So I would argue if T4 ended up at 15 range 10-24 and T3 ended up at 8.0 range 2.0-6.0, would endocrinology be happy with those levels of I presented as a happy and balanced person who could gym and gain muscle? I think not. But can’t have your cake and eat it too. You either treat the person based on ranges or you treat the person based on how they feel and in that lies some of the real issues at play.

[NIKEGIRL in reply to Hidden]

Please do not take my reply to heart. I am trying to be fair and not woooo me. I have cried a million years today and none of them helped me achieve my goal of some elusive T4. Hence the why I am done.

[PurpleNails Administrator]

You did stick to their protocol and it made you very unwell & hypothyroid.

If T4 is irrelevant, what exactly is relevant? They obviously have no clue!

Don’t give up. You know yourself & you have written an articulate post even though you are unwell & I know how badly you are affected when your FT4 is so low.

( ( ( hugs ) ) )

[NIKEGIRL in reply to PurpleNails]

A warm hello to u 👋. Such a hard day. Yes I agree. If T4 is so irrelevant then why r we always testing it? Yes I do accept I am T3 dominant. But also because of that, it goes some way to explain why I cannot find the balance between T4 and T3. On PTU alone I will never have balance.

In the past my T4 was 21 range 10-24 and my T3 was 18.4 range 2.0-6.0. And then today T4 was 5 and T3 was 3.5. There is no balance. There is no opportunity being offered either to find the balance. I was told today I am not technically hypothyrodic as my T3 is still in range. Seriously?

Then the ED dr said that the endocrinologist has admitted that they have “overshot the mark” on my PTU treatment. They’ve made an error. I said to the ED very clearly “do u understand the ramifications of this mistake?”. “I am bed bound alone all day with my thoughts on how shit my life is and how easy it would be to take an overdose?”. At this point the ED dr said he would get Mental Health Support services to me. I said a prescription for some T4 would be a whole lot more help. The answer was No. The ED dr said “it will take a few days to come right”. R u sure I said. Because thyroid drugs and medications take 4-6 weeks to come through the body? The ED dr then said it could take a bit longer and maybe a few weeks. At this point I said “you don’t know how long it will be do u”? No was the answer. Again I said “do u understand the ramifications of the endocrinologists mistake”. The Dr said there are some things we don’t know. It is so hard. I can see why people just give in and surrender.

I’m really done. Next Thursday’s appt is pivotal to how my treatment plan will progress and I have to be calm and cool and pick my words wisely. So hard.

[NIKEGIRL in reply to PurpleNails]

Sorry. That was a harsh reply but in no way aimed at you personally. You’re too sweet. I really cried today at the hospital. I showed the dr how I am suffering and that it is not ok. He agreed it’s not ok. Essentially an endocrinologist should have turned up and fronted for his dept but they didn’t. Apparently they finish work at 4pm and this was 4.10pm. I was as important as the dirt on the floor. Just done.