WHAT ARE MY CHOICES? GRAVES PATIENT

[NIKEGIRL]

Hi. Firstly thank you if I read this post.

Endo wants to see me. Latest bloods. Taking 116mg of PTU a day. Bloods done 20 July at 7.30am.

TSH <0.001 no suprises there

T4 7 range 10-22

T3 6.4 range 2.0-6.0

I have been told today by GP at the practice that the Endo is not happy. I thought the goal was to get to the top end of the T3 range. Today I was told the Endo wants to totally suppress the thyroid and do block and replace.

Next the Endo wants to talk surgery. I will not consider RAI. I want to stay on PTU long term. What are the positives of engaging in an appointment at the hospital?

I have been told I am a simmering pot as an analogy. If I stop the PTU then my levels will just go sky high. I do agree that. Also that PTU is not a long term solution. I thought ATD could be used as a long term solution? Have I got that wrong?

Anyone got any suggestions. Liver and CBC are good. Ive had one liver hiccup but bounced back really well and not unwell since then.

I’ve been on PTU for 5 months. Slowly chipping away.

Am I misreading this? But does anyone else think I am pressured?

Just to note. New Zealand do not prescribe T3 or NDT. Seriously serious.

[Lalatoot]

UK guidelines are that you have 2 or 3 tries of coming off meds to see if you relapse. I was on carbimazole for 5 years with 3 attempts. Relapsed each time.I didn't know enough and the endos didn't know enough to help me find a feel okay balance on anti thyroid meds . I never felt quite right and need anti D's to keep the anxiety in check

I had RAI. Am now on combo T4 and T3. Am much better with the added T3 than on T4 alone .

Yes you are being pressured to have RAI. You need facts . They need to be evidence based rather than just telling you .

[NIKEGIRL in reply to Lalatoot]

Thank u for the reply. I’m genuinely Sorry it didn’t work out for u but at least u can say u gave it a good try. I’m not even out of the starting blocks and I’m being disqualified for trying. We don’t get T3 prescribed here or NDT so would need private sourcing. Nightmare. I genuinely appreciate the reply.

[PurpleNails Administrator]

TSH <0.001 ignore TSH this may take ages to respond normally again. T4 7 range 10-22. BELOW range, not ideal but HIGH FT3

T3 6.4 range 2.0-6.0 FT3 Disproportionately high.

Medics like the TSH in range often disregarding the FT4 & FT3. Or they like the FT4 & FT3 to be quite low as of there’s a spike in levels there’s plenty of time to adjust it.

B&R might be worth considering as currently your FT4 & FT3 are not balanced.

Things which can possibly increase / boost FT3 & conversion.

Low FT4 might drive FT3 up (body prioritising production of FT3).

High calorie intake

Low activity

Zinc

Selenium

Any changes in diet or exercise? High levels of supplements which could be contributing to high FT3?

There is also Propranolol which lowers FT4 to FT3 but I know this isn’t ideal either.

Medics discourage Long term anti thyroid as they view hypothyroid easier to treat.

From what I read the the risks associated with anti thyroid medication do not alter over time. So the risks of side affects remain, but do not decrease or increase. The “time limit” is arbitrary and has no scientific basis, it’s set by protocol. (Likely cost driven).

Unless laws are wildly different in NZ in the UK you can’t be forced to undergo any medical treatment without your consent. Signed consent is required in the UK.

You can expect the specialist to try and convince you how to proceed, even imply you have no choice and assume you will just comply with his idea without any question, but you know thats not the case. My doctor didn’t discuss any options & ignored my queries saying it would be on paper work (it wasn’t). I was simply informed of my treatment plan via 2 min telephone call. So I never signed to RAI consent form. They do ask occasionally if I’m ready to go ahead & send me information leaflets on the treatment or suggest I be discharged to GP and referred back when I’m ready to go ahead. While I’m stable I’m carrying on as I am.

[NIKEGIRL in reply to PurpleNails]

Thank u for the time to reply. I’m eating about 1700 calories a day. Not like before 4,000 to 5,000 calories a day so back to normal food intake for me.

My T4 to T3 ratio has always been wildly high. At least half ie. T4 was 84 and T3 was 46.8 that’s an actual result.

I am not physically active at all. I do take a one a day zinc tablet and 150mg a day of selenium. I am not on a beta blocker. Heart rate is 65-75bpm. I feel pretty good. I get terrible fatigue as I have post concussion syndrome and get 4 hrs of sleep on a bad night.

I thought the goal was to get T3 to 6.0 range 2.0-6.0 so I’ve been titrating my drugs. Im not clear at what point replace gets added. I have ZERO trust in drs. Like NONE.

I do appreciate your advice on consent. They picked the wrong gal to try and rail road.

I do agree about ATD and risk. That’s how I understood it also.

[PurpleNails Administrator in reply to NIKEGIRL]

You used to be very active previously so the drastic activity reduction may well be a major contribution to the disproportionately high FT3.

When you consumed more calories was it from protein or carbs. As a lower carb intake can reduce conversion also.

I think I read zinc needs to be balanced with copper levels, do you test these? You may have high Zinc? Even low daily dose might be too much.

Sleep deprivation can lead to sympathetic hyperactivity with an elevation in blood pressure, heart rate, and an increased secretion of stress hormones (e.g. cortisol, noradrenaline, thyroid hormones. So your sleep issue won’t be helping, is you doctor helping you with this?

Consider a slight reduction or temporary break from selenium. I take higher dose of 200mg but leave a few weeks between new bottles? I read a break had a benefit but can’t find the information about it & why now.

With B&R the PTU would be a high dose and replacement dose would be started at same time. How do you feel currently with your levels. Do you think B&R is something you would try?

[NIKEGIRL in reply to PurpleNails]

When I ate 3,000 more like 4,500 calories it was all carbs. No protein. Now I’m back to eating meat and veges, protein shakes, protein cookie. Gluten free. Yes I was in the gym 6 days a week. That’s why I have wanted to keep my T3 at the top of the range to allow me to gym again and my thinking was T3 would get used to some degree. My plan was 30 minutes of weights building up to 60 minutes of weights maximum training. No cardio. But no gym due to fatigue from lack of sleep which is the result of post concussion syndrome. Zinc levels have not been tested. Dr is not looking at cortisol or perimenopause, noradrenaline or thyroid hormones. All r tunnel visioned on Graves and post concussion syndrome and I don’t have the energy to bring up the possible thoughts. I already feel like a hypochondriac and also my lovely GP left today for 6 months. Who knows. Maybe his replacement will think outside the box. The thought of trusting an Endo I don’t even know to titrating block and replace terrifies me. I am very controlling and do not want to be a guinea pig. I actually feel ok right now with T4 at 7 range 10-22 and my T3 6.4 range 2.0-6.0. If I could sleep consistently 8 hrs I would be away laughing. Sorry. I have trauma. I have ZERO trust. Interesting tonight at psych I was asked “how do u build trust” the answer by giving away pieces of information about yourself to another person and over time u learn to trust a person or u don’t. I find it extremely hard to trust a dr with whom I meet for 15 minutes every 6 months. For me that is not enough. Psychologist says “these people are experts in their field” I said “I don’t care I still don’t trust them. They have no come back on them if it doesn’t work out”. I’m the one taking all the risk. I appreciate I am difficult. I really do. Trauma of 7 years from drs just isn’t erased. I don’t know what I am going to do

[bantam12]

Having had Graves from age 12 to 46, many relapses then partial op mid teens, RAI at 46 I don't quite understand why people want to stay on anti thyroid meds for life, obviously it's a personal choice but I wish I had switched to being hypo way earlier. Graves for so many years affected my heart so I'm now dealing with that.Y

You are still early days in your treatment so quite justified to try for longer but if you keep relapsing then do consider alternatives, it's just not worth slogging away with meds and trying for the elusive long term remission 🙂

[NIKEGIRL in reply to bantam12]

Hi. I do appreciate the reply and the honesty. Genuinely I do. I flip flopped on Carbimazole for 7 months. Side effects were worse than the Graves. Feb 2021 got on to PTU and it’s been a better drug. Psychologically I have been a train wreck. But have persevered with the PTU. Here I am close to being in range and I thought that was the goal but now hospital are saying to dr they r not happy. It’s taking too long to get into range and to talk about block and replace and to go for surgery as my long term option. I’ve been titrating my drugs to get into range. If I had taken the dose prescribed my T3 would be 2.0 and having had suicidal thoughts I don’t want to go there again. I would like to try and keep my thyroid. I would like to bodybuild again. I think because I have ZERO and I mean ZERO trust in drs then it is a leap of faith to have my thyroid removed and be left on T4 only. These are my options. Stay on ATD or take block and replace for a period of time before surgery and then on to T4 only for the rest of my life. It’s not easy and there are no guarantees. I like where I am for now and not being risk taker wouldn’t change right now. If my liver didn’t work because of PTU I would then consider surgery. U can’t liver without your liver. Sincerely thank u for the reply. It’s good to hear that it has worked for you and I say that from the heart

[bantam12 in reply to NIKEGIRL]

Remember that T4 works for the majority of people and they aren't generally on the forums because they don't have any problems to talk about. I tried block and replace but it didn't work, I ended up in a right mess and that's why I asked for RAI, job done ! Been on Levo 20 years no problem, so have both my sisters.

Unfortunately there are no guarantees with anything in life, just have to do what we think is right.

[NIKEGIRL in reply to bantam12]

I don’t even know if replace is a good option for me. I’m pretty happy where I am emotionally. I’ve been suicidal this year, I’m not proud to admit that, I carry shame and guilt for this and I came very close to taking an overdose so the thought of messing up my mental health frightens me it really does. I’m not a crazy person but I have found Graves to be a psychological war. I think it’s the no guarantees that frightens me even more. If it doesn’t work then it’s me who has taken all the risk. It is very hard. I have trauma from drs and 7 years of two sick kids at the time and a system that didn’t care and drs who thought we were time wasters. I’m in psychology right now paying privately and the kicker is the psychologist I use works in the endocrine dept of the hospital I attend but no one gave me a referral even in the 7 months when my T4 was over 100 and T3 was 49. I wish I had a crystal ball and could take a leap of faith. I understand that potentially I am holding myself back but with no T3 or NDT it’s just not a risk I feel I am ready to take. I wish I felt differently and maybe I will need surgery if my liver does not cope.

[tattybogle]

i've waited so long for you to pop up and say . "i feel ok ish at the moment , and nothing crap has happened for a while "

I was worried when your liver did a wobble .. i though you'd be left with no option but surgery..... but it's got over itself (well done that liver !) ... and now you 're thinking about good things like body building ,instead of feeling suicidal.

and NOW they want you to change something ?

Tell em to sod off.

The time to change something is when you have to , or when YOU want to ,, not before.

[NIKEGIRL in reply to tattybogle]

Hi Tatt. It’s not good to hear from you. It’s GREAT to hear from you. Yes that liver wobble. Pretty sick for a week. GP says it could have been a virus. Bloods look good right now. Liver and CBC good. I feel like me. Pretty happy. Although I have my days when people piss me off. I’m working on sleep with post concussion syndrome. Working with a psychologist on the trauma. T3 is 6.4. Range 2.0-6.0. I’ve found my maintenance dose of PTU which is 107mg. 100mg x 5 days and 125mg x 2 days. That held my T3. I thought the goal was to get T3 to 6.0. Top of range but now my lovely GP informs me the hospital Endo wants total thyroid suppression and to continue on block and now add replace? I do agree that if I stop the PTU my levels will shoot up again very quickly. As I put it to my nice dr who by the way is now away for 6 months (big sigh and I told him he better come back, his fiancée is taking a placement for 6 months at another hospital as part of her training)-I like the grass in the field I am currently eating. This is my analogy. This grass is ok. PTU is ok. It’s doing it’s job. However. I am being told to go to a new paddock and eat new grass. This is to do block and replace for total suppression and ultimately surgery. I’m not so keen on this new paddock. It could be wonderful and it could but I like what I have currently. Analogy over. My nice dr said “please consider going to the hospital appt and see what they have to say”. I am his first and only patient on PTU. He said he is very happy with the progress made and I am out of the danger zone but to be open to consider a permanent solution. I am not in a gym right now but come October in the spring I will want to go to the gym and start lifting weights again. I can’t help it. It’s in my blood. I LOVE WEIGHTS. It makes me happy. I kinda feel if it ain’t broke leave it alone. If the liver does not cope on PTU and I got very very sick then that’s a very different conversation. I genuinely hope this finds u well. Is your daughter driving? Passed her test? And how much of a motorbike is in your kitchen? Any interesting packages arrived? Love to u always

[tattybogle in reply to NIKEGIRL]

Yes all is well here , just been out to get a pint of milk and had a late night paddle in the sea under a big orange moon, on the way home. Daughter passed test and started very impressive new job, so is driving hundreds of miles on motorway in a big fancy company car with air con... so she's very happy .. ( and i'm trying not to worry about her , without much success)

life has put you in some pretty shonky fields full of thistles over the last few years , so i say .. if you've found yourself in a decent enough field, with nice tasting grass , you are entitled to stay put and enjoy some stability while it's available ... cos sure as eggs is eggs , life will chuck you some more thistles one day, but there's no sense in going looking for them if you don't have to.

I suppose if you really had nothing better to do that day ,you could go along to your appointment, and just smile, (without listening to a word they say).,,,, after all, i get the impression this is how Endo's usually conduct their appointments anyway.. so they have no business being offended if you do it back to them for once...... and since they can't offer you any T3 should you need it , it seems perfectly reasonable to want to hang on to your ability to make enough of your own ( even if you do sometimes make a bit too much for their liking)

best wishes , going to bed now .xx

[NIKEGIRL in reply to tattybogle]

I can’t believe u went into the sea for a dip but it is summer for U. I think U will always worry about your kids driving. I suppose I will have to go to see the Endo. If I don’t I will get discharged out the system forever. It’s happened before. Zero tolerance. I don’t know what I will do. I have been feeling happy and now feel like it’s all going to change. I’m not happy about that. It’s hard. I laughed at your reply today. I did love it

[tattybogle in reply to NIKEGIRL]

I only went in up to my knees.. (i'm a wimp)

I remember when we were young and nieve and we thought doctors were supposed to help you feel better.. how did it come to this .. we're happy and along comes a doctor to spoil it.

Don't let them into your head ..( you can be pretty sure you're not in theirs ) Just go through the motions .. don't give it any of your mental energy...it's just a 10 minute appointment to tick a box, that says "thankyou for the information, i'll consider what you say , but for now i'm stable on PTU ,and i choose to stay on that with blood monitoring... i understand the risks and i'm Ok with them, , Goodbye for now... next patient please"

Remember you have more power than you think here .. They can't force you to have it out, or take more PTU /Levo , and if you don't, they cant stop prescribing PTU.

their only power is 'leaning on you' .. so don't be 'leant on'

Easy to say, i know.... but stay in your happy place, and if it's hard to feel powerful on the day ... if it's a bloke , just imagine him having a baby.. and you'll soon realise you're stronger than him.

[NIKEGIRL in reply to tattybogle]

Well knee depth is ok. I’ve been in the beach at Bournemouth and Poole in the summer when I did the lifeguard regatta there. Many moons ago. Ah yes as I would say. Remember when we were young and dumb. Same as naive. I won’t be swayed. They’ve met their match in me. My psychologist works at the u wouldn’t believe it “the endocrinology department” ah the Same place I go to see this Endo. My psychologist says he gets called in when people don’t take their drugs. I was like WTF. I didn’t take carbimazole for 7 months and no referral. I will go only because I don’t want to get booted out the system and when my GP returns (I actually like my GP and he said to me this week, that over the last year he has been incredibly worried about me and he actually gave me a hug, he asked if he could hug me as it was the last time I see him for 6 months) then I won’t have to explain what happened. I think Elaine Moore said u have the best chance of remission on block alone.

[tattybogle in reply to NIKEGIRL]

What a nice GP.. you deserve one .I do hope he comes back. I don't know any fact's on Block ,versus Block and Replace, but my gut says you'll have the best chance of remission by staying unstressed and being boring, in nice field of grass. and not giving your body new hormone changes to deal with.

It might not be your normal sort of thing ,as i remember you don't 'do' meditation ... i can't handle it either..., but If you can find someone skilled to teach you proper long form Tai Chi, i recommend it .. surprisingly difficult muscle work out/stretches/flexibility, but comes with breathing correctly and mental focus =unfocus... ie. all the best bit's of meditation , with none of the 'sitting still and trying to think nothing'..

Learning that was the best thing i ever did for my mental health and also my muscles... and you can do it in a field with cows watching

[NIKEGIRL in reply to tattybogle]

Jono is my GP. Young guy. The first time we met him was because of our son. Our son was 20 at the time. Our son was on prescription nerve blocking drugs and had become suicidal on the prescription drugs and had lost all hope and trust in our GP of 17 years so we interviewed Jono as he was taking on patients and is in his early 30’s and having used our current psychologist previously we knew a young man being our son would be a good fit with a young male dr. At that interview we talked and then he sent my son and husband out of the room. I remember very distinctly Jono sitting me down and him standing in front of me saying “do u know how sick U are?” I said “yes I do and I really don’t care”. That was the first time I met Jono and now after a year with Jono I look back and think “he may never have seen me ever again but he took the time to TRY and connect with me. Don’t get me wrong. Jono and I have not seen eye to eye and I have written him 3 page letters explaining why I behave the way I do. In fairness Jono has rung the house on several occassions predominantly on an evening to say “he is very worried about my blood work and please to take the drugs being carbimazole” at the time. So it hasn’t been plain sailing. It was me in January this year who said about PTU being an alternative to carbimazole. I am Jonos first and only patient on this drug. Jono has looked after me incredibly well. He has pissed me off. I have cried in front of him. I have laughed with him. I have lied to him. I have been unwell. And all through this process he has said “I am here for you no matter what you choose to do”. He has been calm. He looks me in the eye and engages conversation. He listens and remembers and 4 weeks ago he asked me “do u want to bodybuild again?” No one and I mean no one has ever asked me that. I have said I will probably never stand on a stage again but I do want to go to the gym and put muscle on. In fairness Jono does not know everything. I’m ok with that. Because he cares I am tolerant of him not knowing everything. I wrote Jono a goodbye card and bought him a small house warming gift. I wanted to ask him if “I could give him a hug” but I thought no, he may not be comfortable but how kind it was that he asked me “could I give u a hug”. For me he has shown me kindness, compassion and he is “one of the good guys”. Jono has gone to the top of the South Island as his fiancée Lucy has not finished her training and Lucy has taken a 6 month placement. Jono says he will be back in February because Lucy will be back at Christchurch hospital for another 2 years finishing her training. After that Jono may leave altogether. I don’t think that far ahead. Ezra is my dr for the next 6 months and studied with Jono. Jono has said Ezra is nice. I said to Jono “it’s not about being nice. I have trauma. This is not personal against you Jono I said. I have trauma from drs and it is the position you hold that causes my trauma”. I will miss Jono deeply. I do need to do relaxation. I live in rural New Zealand with fields full of sheep. Everything will work out. I will have to go and see what the Endo has to say but I understand it’s my choice. It’s my body. It’s my life to choose what I want for me. Right now I don’t know what that is and my life experience has taught me that when I don’t know what I want then to stop and sit and think.

[tattybogle in reply to NIKEGIRL]

well sheep will do to stop and think with, if u can't find any cows.. they are less nosey anyway... cows do tend to stand in circle and look at you like you're a nutter...

i think a Doctor who you can fall out with, but still work with , if you've got the feeling they have actually seen 'who you are' is far, far better than one who agrees with you.

I have had a big row with mine , and i get the distinct feeling he doesn't like my attitude and never will .. but i'm keeping him.. because i know he's 'seen me', and he's genuinely concerned.

I'd far sooner have a difficult argument with someone who knows me but thinks i'm wrong (cos sometimes i might be) than be ignored by someone who doesn't know me well enough to care.

That's what 'real' doctoring is about.. My dad eventually found a good one . who went to the trouble of researching obscure medical phenomenon, and found out what was actually making him fall over, rather than blaming it on the pub like every one else.

One day that Doctor asked me to have a quiet word after i'd taken my dad to an appointment.... "i'm really worried about your dad today....he's just said 'thankyou' " he knew my dad well enough to know it meant he must be feeling really bloody awful.

[NIKEGIRL in reply to tattybogle]

There are genuinely good people in the world. They are like nuggets of gold. Rare. Yes fair point. Better to have a working relationship with a person who is engaged with u and sees you as a real human being. Jono holds a firm line on what his training as a dr has told him and I have to respect that. I don’t have to agree but I do have to respect him that he has trained for at least 7 years. With Jono I find there is a level of human connection that allows tolerance. How kind that was of your dads dr. No one is asking for perfection in drs. It’s doesn’t exist. They are human like all of us with positive attributes and flaws but I always say to people I work with and others. If u don’t love the work u do then go out the workplace door and find work that u r interested in. I better let u sleep now. Thank U for chatting. Pleasure as always.

[NIKEGIRL in reply to tattybogle]

I’m going to go to bed now. Thank you for being so kind and amazing. After 7 years I do deserve a good dr. The psychologist is amazing. I trust him implicitly. We r doing good work in psychology. I’ll be there a while but the psychologist is worth his weight in gold literally. Another great young guy. In New Zealand we would say he’s a LEGEND. Enjoy the day. Maybe a package will come today who knows.

[tattybogle in reply to NIKEGIRL]

nite nite .. don't fall out of bed .. remember you're upside down in NZ

[NIKEGIRL in reply to tattybogle]

Good point. Not only r we upside down but we r bloody backwards as well with thyroid drugs. I would say “Jesus” but he’s got world issues to solve

[nellie237]

I want to second EXACTLY what tattybogle has said. 🤗

[NIKEGIRL in reply to nellie237]

I know. It’s a classic tattybogle answer. Love it