Will I ever stop regretting?: Hi everyone. It's... - Thyroid UK

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Will I ever stop regretting?

lau99
lau99

Hi everyone. It's been a while since I last posted here, but I hope everyone has been well these past couple of months.

Today I'm not back with any real updates, but I'm just finding this neverending journey so, so difficult. I'm not even sure where to start - there's so much I feel like I'd have to cover to even come close to describing what this has all been like. We're coming close to the horrible 2 year anniversary of my operation at age 19, and I still feel such deep, profound regret about my thyroidectomy. I wish so badly that I had never done it, that I'd backed out at the last second like I wanted to. I thought I was making the right decision for myself. I was in so much pain every day from the Graves', but even then I was still crying on the operating table as they put me under the anesthesia, not wanting to go through with it but feeling like I had to.

Still, nothing could have ever prepared me for the mental anguish that would follow after the surgery. For the complete abandonment I'd face from all of my old doctors after being discharged, for the hurtful comments from people around me who don't know what it's like to suffer in this way, for the few compassionate doctors I do have seeing that I am still visibly unwell but being unable to do anything but helplessly send me home...

I just feel so utterly betrayed. The doctors all told me I would be better now. And now that I'm not, suddenly it's all in my head and I should go to counselling to see if my symptoms improve. Obviously this predicament is ultimately my fault because I agreed to it, but...it doesn't make the gaslighting hurt any less.

Sure, there are some days, even some weeks that are better than others...I don't always feel totally hopeless and miserable. But there still isn't a single day that goes by that I'm not regretting, or wracking my brain thinking of ways to fix this horrible mess that I ultimately know won't work, and meanwhile I have to constantly hear, "just keep trying" or "it'll get better" when it never does. The last time I believed that, I agreed to have an entire organ of my body removed!!

I have so many ambitions and aspirations, but I feel I'll always be held back by this. All the nights I've spent awake crying as softly as I can so no one hears me...what will they all amount to? Is this what the 'better' life I was promised is supposed to look like? Is it meant to look like being as sick as before, but now with much less support and much more admonishing for being ungrateful? At least before my thyroidectomy I could recognise myself in the mirror, and I didn't totally hate the way my body looked, for starters. And it seemed back then, my doctors actually cared about me a little...although it was hard, particularly in the month or so leading up to the surgery, at least my body behaved in ways that were predictable for me. Now, I'm totally lost on how to cope both physically and emotionally, and I have a whole new set of anguishes that I'd never even really thought about before. I'm not well versed in medicine, but I've had to become an expert in my own illness because so few endos can be bothered to.

I'm truly sorry for such a long and depressing read, I really am. But I just feel so much worse pretending to constantly be positive and resilient in my real life when the truth is that I'm hurting really bad inside.

50 Replies

Oh lau99 imSo sorry

Have you thought any more about self medicating?

lau99
lau99 in reply to DippyDame

Definitely. I think I'm going to try taking myself to a higher dose of Levo and maybe adding some metavive alongside. I'm just not sure when I'll find the resolve to go through with it...

DippyDame
DippyDame in reply to lau99

By writing this post you have taken the first important step ....your resolve is strengthening!

This is absolutely not your fault....full stop! Your medics sound clueless and lacking in empathy. This is not "all in your head" you are physically unwell due to insufficient thyroid hormone....and need to be correctly medicated, not patronised!

You sound woefully undermedicated. Have you considered taking someone with you to appointments, that might boost your confidence and make the medic think twice about listening to you. Make a note of all the things you want to say/ ask, that used to stop me sounding like a demented duck!!

You said in a previous post that you are currently on 150mcg of Levothyroxine and 10mcg T3. I think you would benefit from more T3...10mcg is a small dose particularly following a thyroidectomy. And possibly less levo. Try asking for more T3, it is the active thyroid hormone required by almost every cell in the body in a constant and adequate dose

You are still young ....you can do this.

At your age I could not have imagined ignoring my medics so I did as they advised and ended up barely able to function....no Internet then (I'm 70!) to help with research!

If you feel self medicating is your only option then many of us do just that and we are all here to support you as best we can, which ever route you decide to follow.

Don't apologise for venting, it helps.....in fact, letting off steam is almost essential!

Taking control is liberating, The only thing you have to lose is ill health!

Good luck.

endomad
endomad in reply to DippyDame

Totally agree xx

LAHs
LAHs in reply to lau99

I did not see anywhere in this thread what dose of Levo you are on - it's a long thread maybe i missed it - but anyway. The name of the game is to increase your T3 and one way to do this is to take selenium (Se). Se is the catalyst for the T4 to T3 reaction so measure your Se via a blood test. If you have very little then this might be the reason why your energy is so low. I eat Brazil nuts to get my Se because some things (like metals or psuedo metals) I like to get from food instead of pills. Give that a try. Get a good quality Brazil nut (I use nuts.com, I believe they ship to England). If this works it will save you revving up your Levo to heights which may cause other side effects.

I felt so sad reading this. Sad for you but also sad recognising this in myself and many of the posts I read on here. At least you’re here though...you’re not taking it completely lying down x

I'm in the US but I feel that many doctors here do the bare minimum and often ignore people who require more care and nuanced treatment. It's emotionally exhausting to have to constantly advocate for yourself as a patient. If there is anything worse than suffering from symptoms it's going to a doctor who doesn't want to communicate, who does not recognize your needs. The interactions can be dehumanizing and traumatizing.

Regret is a very heavy feeling. Have you ever come across the term "radical acceptance?" It's sort of the opposite of denial and regret. In our case, we kind of have to accept that Graves is an illness and we are limited in our treatment options. In the end it's a disease that requires treatment for the majority of people. You could say, "well, what if I tried to stay on meds longer instead of surgery then you would be feeling better." Except you never know if that would actually be the case. You might still have needed surgery. Some people get RAI and they regret RAI. Some people regret staying on the meds too long because they feel better after surgery. Some people react badly to the medicine they have to get permanent treatment. There is and was no way for you to predict the outcome of your decision. We like to believe that everything is up to personal choice. It's a false sense of control. So many factors play into a decision. Don't feel bad about making the wrong choice when your options were unfortunately few.

This is not meant to diminish your suffering but only to say that resolving or coming to terms with the thing you regret might ease some of the emotional burden.

I had a thyroidectomy 13 years ago and agree with the posts above. I didn't want to have it and knew I would regret it, but felt there was no alternative. There was no choice to make so I have tried over the years not to regret something I couldn't really control. I have struggled with really poor health since and it has led to a lot of losses in my life as a result. However what has helped the most has been self-education and self-medication. I've found I am better on T3 alone rather than any other combination after a lot of experimentation. I have disengaged from the NHS as much as possible and won't ever see an endocrinologist again. I never met one who was in the least bit helpful! I've had some better experience with GPs and a rheumatologist I used to see, but on the whole I think our medical system is useless at helping people with complex chronic conditions. I am annoyed at having to buy my T3 online which just seems like a ridiculous situation and I do worry what will happen to me in old age when I probably won't be able to afford to do that. In the meantime I try to focus on how I've managed to rebuild my life and the positives and laugh about the stupid things my body presents me with everyday! Good luck with your journey 🙂

shaws
shawsAdministrator in reply to glossoptopcat

I do not understand why those who have had a thyroidectomy are not provided immediately with a T4/T3 combination or if still symptomatic NDT. The fact that the 'experts' withdrew NDT through misinformation - despite it saving lives from 1892 onwards just shows their disregard for those struggling with dysfunctional thyroid glands. They have chosen the wrong profession.

I am so sorry

Keep strong have faith

I'm really sorry too. I know how hard it is to live with regret and hope that you can overcome it somehow.

I have heard the same story for many years how women without a thyroid struggle to get the correct treatment afterwards. The first thing my Endo said to me was to have RAI or my thyroid removed and I am so glad I ignored his advice now. I intend to keep my thyroid as long as I can unless it becomes cancerous.

I am so sorry you are suffering so much and I am sending you a virtual hug ((((HUGS))))

Just sending you a pm x

Lau , I felt such empathy there when I read your story . It’s a very sad testimony and I’m sorry for the regret you now have . I think , like many of us, you were not told the awful truth of what may follow from your Surgeon , Doctor or Endocrinologist after the surgery to remove a very intrinsic part of your body.As soon as I was told I had Graves’ Disease I was told .. “don’t worry , you will have RAI to burn it out , or Surgery to remove it , then take Thyroxine for the rest of your life , Youll be fine “

Something , I have no idea what , inside my head , told me to say No !

My Doctor did mention , somewhat flippantly, that it was caused by Antibodies, and that’s what stuck in my head !

I remember asking him ,

then , shouldn’t I try to address my Immune System ?

at which he scoffed and said , “well , good luck with that then “

His answer infuriated me and I resolved at that point to go for it !

I was very ill at that point and at the worst point , health wise , in my life .

Many years later I now feel really well

again .

You can do many things now to help YOU

Get to a better place health wise.

You came HERE, that was my first day of recovery the day I came here .

There are many kind and generous people on this site who have been where you are at this moment .. ask and you shall receive .

It’s not the end if the world for you . You’re just very very tired and confused by the overwhelming situation , but that situation can be changed dramatically.

Start by standing up to this ‘thing’ and being strong , Empower yourself to learn everything you can regarding your Thyroid situation , so that you then know more than your Doctors. .. mine actually told me ,

“ Wow , you know a lot more about this than I do “

... beggars belief !

Hang in there , and get started on your recovery and understating of YOUR body .

The Best of Luck to you x

Luv Mx🌹

Sorry to hear your story. You're in good company here - we can all have an understanding of what you're going through. Thinking practically, can you find a new friendlier Endo? Can you test your thyroid levels and post them here with ranges for advice? Get your bloods drawn first thing in the am and no vitamins with biotin in for a week before. X

lau99
lau99 in reply to JAmanda

Thank you so much for reading my post...I'm constantly blown away by everyone's kindness on here. I'm finding it hard to respond to eveyone individually because the posts are all so touching (and I keep finding myself starting to cry!) so I hope that leaving a heart on everyone's messages to me conveys my gratitude. I was directed to a private practitioner in my area by a member of the forum, and am currently waiting for an appointment with him after taking the plunge and accepting his expensive consultation prices. Hopefully this is a step in the right direction...I don't really want to give up, but I'm just so tired of having to keep fighting...

Hi Lau, I have just passed my 2 year anniversary of RAI and I also deeply regret having it done, over the last few months I have have been very depressed about it to the point of what is the point of struggling. I often pray that by some miracle by thyroid will grow back like some do and beat myself up for being so bloody stupid, but I didn't have a clue back then, I trusted the dr when he said its just a simple pill and you will feel so much better! Yeah right. But I had to get myself back out of the slump, whats done is done, I can't live in regret and misery. I tell myself that if I hadn't done it things could be worse. The medication could have damaged my liver by now or my heart could be damaged from being over worked, tablets could have destroyed my my blood cells etc. Keep your thyroid or get rid, either way we would have health issues. I'm keeping focused on making myself feel better. I'm experimenting on different brands, (2 brands made me quite poorly)T4 and T3, taking vitamins and cutting out gluten and dairy etc to see what makes me feel better. I'm currently trying to get the lactose free meds as I think I'm lactose intolerant so praying it will help if I can get them. I wish you luck, its a long road and hopefully we will both be happy again soon. Just keep strong and keep fighting Xx

lau99
lau99 in reply to Hookie01

I'm so sorry to hear how horrible your experience has been...it's just terrible. I can't help but feel like the treatment options for thyroid problems are so slim. Thank you for your advice and your words of encouragement...I took a step back from here for a few days to try and get my head right, but I think I'm ready to start making more steps towards getting better again.

Hookie01
Hookie01 in reply to lau99

Its very hard isn't it. I wish you all the luck in the world. You can always message me if you need anything, even if its just a rant. I know exactly how you feel, you are most definitely not alone in this, it is a daily battle, we have just got to make sure our minds are strong. We can do this xx

Hi. I read your story. There have been wonderful responses here from good people who are here to support you. When you are offered RAI,surgery, carbimazole and PTU they are all choices that come with consequences and none of the consequences are yours to say ‘I made the wrong decision’. I’m pretty sure you would not have chosen this disease for yourself. I have been diagnosed with trauma from the health system, albeit in New Zealand. How you talked about your journey and the failures of professional medical doctors along the way is traumatic. I urge you to google trauma, it will enlighten and validate you and how u feel today. I am only new in my journey but what I would politely say to you is seek professional psychological help. A psychologist is trained to help u work through trauma and your feelings. It’s not just talk therapy. It more than that. All the feelings you have a valid. They are real and they are yours. Do not be sorry for how you feel. Do not put on a brave face for others. Do not apologise for your post. This is the place to put your post. You matter. Feel free to private message me anytime. You are not alone.

thyr01d
thyr01d in reply to NIKEGIRL

Whole-heartedly agree with this post, you are not getting the understanding you need at this time, and, reading your post, I think that as a consequence of the op you are suffering from depression. Forgive me if I'm 'teaching grandmother' but in depression it is not even possible to think positively. If you have people around you who don't understand this, it will leave you feeling even worse. If you can't get an appointment quickly with a psychologist then how about a counsellor in the meantime? (I am a counsellor myself yet like NikeGirl would recommend a psychologist for you as their training covers medically induced problems such as you are suffering from).I am so sorry for you Lau99 to be going through this so young but have hope. My problems started at around 13, also with surgery which left me worse off, yet from the wonderful people on here I learned how to sort myself out with support from medics and am now at 64 better than for decades. One question, whereabouts do you live? I have been pleased with my endocrinologist and wonder if you are near.

Big hugs, and keep writing on here, we are pleased to help you.

lau99
lau99 in reply to thyr01d

Thank you so much for being so kind and understanding...and yes, I am most definitely depressed. I'm on 75mg of Sertraline to help me cope, but I can't speak too much to its effectiveness, really. I've been in and out of CBT for nearly as long as I've had Graves', with my last therapist being trained to specifically deal with chronic illness-related depression. I really am trying, but it feels like no treatment is really sticking for me. I've thought on several occasions that I must be traumatized by this whole experience - even seeing words like "thyroid" or "Graves' disease" outside of this website makes my heart jump and sometimes my eyes teary, if I'm feeling particularly fragile. I definitely think seeing a trauma therapist will be a beneficial next step for me.

This was painful to read as it resonates so much - I agreed to my daughter having RAI after a couple of second opinions told me it was her only option (i was a lot less knowledgeable then) and I carry a similar burden of regret as I watch her struggle with her health, mentally as well as physically. you did what you thought best at the time on the advice of ‘experts’ and that’s all you can ask of yourself. the real experts on this site have helped my family enormously. I hope you are able to forgive yourself in time and find better health xx

lau99
lau99 in reply to Jacs

I'm sorry for what you and your daughter are going through, and I hope that you'll be okay...It absolutely wasn't an unreasonable decision for you to make, given the circumstances. I just wish we had more options :( I hope I'm able to forgive myself in time, and I wish the same for you, too x

Sorry to hear how you badly you are suffering. I still have my thyroid but don’t think it works at all now. I didn’t respond very well to thyroxine but am so much better on natural desiccated thyroid which contains T3 as well as T4. I recently had a blip when many of my symptoms returned which was very scary, but luckily a small dose adjustment seems to have sorted it out. It was a horrible reminder though.

Have you had the pack from TUK and considered seeing one of the doctors they recommend? X

lau99
lau99 in reply to Clarebear

Hi Clarebear, thank you for your kind words and advice, and I'm sorry to hear that you went through a tough time with your treatment. I'm currently trying to get referred to one of the NHS endos on the list, but am also waiting on a private appointment in the meantime...hopefully all goes well...

In a number of years someone will make a pioneering discovery...stay sane...use that anger positively...and be here to benefit from this.

We must all lobby and pressure...we must not be a silent minority

Together we CAN hasten change.

I see my endo f2f next week my blood is hot even now.

Good luck

lau99
lau99 in reply to Healthy-1-too

Good luck at your endo appointment! I hope it goes well for you. I can only hope that someday there will be some kind of medical breakthrough, as you say...

I'm so sorry you feel like this. I had my thyroid removed 25 years ago. RAI, fortunately, was not an option. I know of people who have died of throat cancer because of this treatment.

I had thyroid cancer, although the doctors didn't bother to tell me this, but I was fortunate that the tumour was encapsulated, so didn't require chemo. However, like you, my body is nowhere near what it was. I struggle with doctors and endos who know nothing, but insist that they know best.

I have to admit that I didn't know there was a pack you can get from TUK, and I must look into that. I think it would help if you did find someone to talk to about this, because you need some help. Well done for speaking out. That is the first step and I do hope you begin to find some acceptance of what happened.

I had a TT for Thyroid Cancer too - no chance of refusing. I feel that once the thyroid has been removed for any reason, we are never the same again.

I feel so very sorry for you and regret that I cannot offer any advice. Other members have expressed their sympathies so much more eloquently than I. I can identify wholeheartedly with "crying very softly so no-one else can hear". Just want to send you big cyber hugs and hope that it gets better for you.

💖x

SlowDragon
SlowDragonAdministrator

What dose levothyroxine are you currently taking

Do you always get same brand levothyroxine?

Are you currently taking any T3?

If yes, how much and do you split the dose

When were vitamin D, folate, ferritin and B12 last tested?

What vitamin supplements are you currently taking

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine or T3

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Last 1/3 or 1/4 of T3 dose roughly 8-12 hours before test

Suggest you write new post with latest results and let’s see what your next steps need to be

It will get better.

Meanwhile sending you a virtual hug 🤗

Bless you lau. I know exactly how you feel and I feel the same. I’ve seen people get well on this forum. I’m sure you will too!

shaws
shawsAdministrator

It is always better to vent your feelings and on this forum the majority of members understand why we have to do so.

The fact is that the members on this forum are so helpful and many extremely knowledgeable, far more than 'supposed to be experts'.

Oh lau99. I don’t know what to say other than don’t beat yourself up over a decision I bet you were probably put under a lot of pressure to make. I was told from my second visit that should my block and replace not work then I could have RAI. After that it was every visit and at every visit I said ‘no way’. One of them even held her thumb and first finger up like she was holding an imaginary pill to show me how small it was, then when I said I didn’t want to risk becoming hypo she said there was no way I could become hypo! Stupid girl of course you will become hypo if they take out your thyroid.Anyway, what I’m getting at is that I can imagine the pressure you cane under to have it done. You are much younger than I was back then, you were desperately hoping to be made well again, you trusted that they knew all about how to fix you. So you’ve got to stop blaming yourself. You did what you thought was best for your body at the time - what you had been told by ‘experts’ what was best for your body at the time.

There are lots of people on here who will be able to give you good advice. I don’t know for sure but it could be a long and possibly slow process but there are people out there who have had your problems and who are now sorted out and living a good life so contact them and fight back.

I’d start by asking for all of your blood test results along with their lab ranges right back to the start of your treatment - say it’s for your records’ they can’t refuse you in the UK - you are legally entitled to them. Then if you haven’t had your vitamins D and B12 plus ferritin and folate tested have that done. I ended up giving up on my doctors and having the Medichecks Thyroid 11 or whatever it’s called now home fingerpick test done so that I could see how my bloods were. It also showed my antibodies were still high so I went totally gluten free which brought them down. At the same time read and learn as much as you can about your thyroid. You can easily become more knowledgeable than the average endo.

You have been treated disgracefully but none of it was your fault. So take a deep breath, gather yourself up and plan how you are going to fight back and get back to a good place - with the help from people on here who’ve done it before you. ((((Big hugs)))) to you.

Hello lau99,I am very sorry for what happened to you. Yet I ask you, please don‘t blame yourself. You are not alone and I am very sure you will get help from the nice and knowledgeable people of this forum. And I want to encourage you. I live without my thyroid for 25 years now. I was terribly undertreated for a very long time and had become very sick, unable to work, whole future shattered. The usual pain with clueless doctors and endos. Chronic Lyme disease, CFS, lame leg, terrible headaches, dementia-like symptoms. Yet with what abilities were left I read and studied and searched and tried out so many different possibilities, healing practitioners, functional doctors. To make a long story short: All this was worthwhile, after those long years of pain and struggle , I can walk, e-bike 30 to 50 km, work part-time again, make music and am very satisfied with my life and very thankful for this forum, for the love and help I get. I wish you all the best and that you can later say: I did the best with what I had!

What dose of thyroxine do you take and what are your results, including TSH, T4, T3, Folate, Ferritin, D and B12?Karen

I'm so sorry to hear how low you are feeling lau99. You mention that some people around you are not very understanding about what you are going through - maybe you could try showing them some of the posts from other members of this forum to make them see that there are other people who have or are still also going through what you are, this may give them a bit of a wake up call to be more supportive of you.As others have said I think you should take matters into your own hands by seeing a recommended private endo if you can afford to or getting some up to date blood tests to post on the forum for the experts here to advise you on your next steps to regain your health. I think you really need to get one your family members or a close friend on board though too so that you have someone to lean on on your journey. This is a lot for a young person to have to deal with alone.

There's definitely no need to apologise for your post, reaching out to people who get where your coming from is the right thing to do. I hope things get better for you soon

You sound extremely under medicated. Please post your last lab test results. Low Thyroid leads to low stomach acid which leads to poor absorption of minerals and vitamins which will make you really sick.I have learned that endocrinologists the world over are unlikely to know enough about thyroid disease. I have never met a good one. Two books worth reading, Dr kharrazian, Isabella Wentz. They will set you up for self healing. The admin here are also better than any Endo.

Don't blame yourself, channel your energy into working with what you have, that is getting properly medicated with thyroid meds, even if that means self sourcing T3, supplementing your diet with vitamins and iron if you test low (you always want to be OPTIMAL with your levels), taking betaine pepsin HCl with meals if your stomach acid is low. Google home test for that with baking soda- very simple test.

Getting well takes a long time, just take one day at a time x x

Hey there Lau ;

I secretly wished that during this period of lockdown you had found some help and support :

Jusy to say that in spite of having had RAI thyroid ablation for Graves Disease and despite having been refused anything other than T4 thyroid hormone replacement I've gone on to do it for myself : as you already know :

For me, there came a time when I thought it couldn't get any worse than staying in an unflexible system that left me so ill and wanting ;

So, not going to the doctor turned out to be the right decision for me :

When you have exhausted all the legitimate channels open to you, and been turned down, and offered anti depressants and anything other than what you need - this will be the time when you too will feel able to take this forward for yourself.

When we last spoke, I think there was one more endo on the Thyroid Uk list that took private and NHS referrals.

I don't know if this is still an option for you or what your plans are, or even where you are currently living but I shall pick up my thinking cap once again.

None of this is your fault - please stop beating yourself up, and forgive yourself, you have done nothing wrong, as all you did was trust the doctors, and the system, just as I did, and it's all the more ironic seeing the situation that we all now see ourselves in.

Most people don't want to understand as the whole issue is bound up their very being, so just move on and turn this into energy to resolve issues and move forward.

So sorry to read what you are going through. I echo what others have said- they have also given great advice and virtual support. I know it’s easy to say but try to be kind to yourself. Your feelings of hopelessness and regret will be heightened by the fact that you are lacking thyroid hormone or if you are on replacement your hormones may not be correctly balanced for you. So your anxiety feelings will be compounded by this.

If you don’t have a good doctor then with this group of so many experts you may be able to self treat.

If you can get some NDT or something like metavive that - it may help you get much needed T3 (and T4). Or perhaps Levothyroxine may work for you - not sure if you have tried it ? Tends to be the first point of call of GPs.

Like others have said then get your levels tested and adjust your treatment accordingly.

When I was at my most sick in 2018 with Lyme disease and lots of hypo symptoms my T3 level was too low - I had so much regret about decisions I had made eg why did I walk that route on that day across a field with long grasses - I blamed myself for getting sick. I had dreadful neurological symptoms and 2 specialists I also heard “could this be in your head ?” It was devastating to hear this from experts you have spent time and money to see on the Hope they can help you.

I had no clue about Hashimotos even though I had been on Levothyroxine for 16 years.

Looking back I know my chronic colds, sore throats, lethargy, insomnia, dental and gum issues and anxiety were all related to poor thyroid function. I’ve learned this from the wonderfully knowledgeable people on this forum.

I know my situation is nothing like yours and having a critical organ like the thyroid removed is a significant/traumatic event.

But what I’m trying to say is your feelings about your “decision “ to have the surgery will feel much much worse because of the lack of thyroid hormones in your system - ie it’s a vicious circle.

I too think having therapy or counselling would be good as you have suffered a traumatic event - seeing the right person is key though. I saw a practitioner who used the emotional freedom technique about 4 times and it really helped me.

I wish you only the best. You have a long life to live and you deserve to live a healthy and happy life.

Virtual hugs xxx

Don’t be sorry you nailed my past 4 miserable years living without a thyroid.

Prior to my thyroidectomy I was a fitness instructor and worked in a gym (fit and healthy) I was told you have cancer and once your thyroid is removed life will continue on as if nothing ever happened “all lies” Wasn’t long after the thyroidectomy that I developed psoriatic arthritis and you top that along with being thyroid less it just destroyed my body and my outlook. Im unemployed now and obese because I can’t even walk a block without my legs locking up.

I feel for you but your young got a lot of good times a head of you the deed is done so you can’t keep looking back its time to look a head and make a plan to turn yourself around .... start with getting a new endo and don’t let anyone tell you what your going through isn’t real ... it is real and coming here and venting and getting good advice might just be what you need.

shaws
shawsAdministrator

I believe if the 'experts' are going to remove thyroid glands, they should tell patients exactly what could happen if levothyroxine isn't restoring their health. Hypothyroid patients who're not recovering should be offered NDT or T3/T4 or T3 regardless of the stupid/nonsensical 'rules'.

They should also ensure he/she will have medication suitable to replace a thyroidectomy. This would be NDT (recently removed from being prescribed through misinformation) from those we'd expect to know more than we, (the patients) or T4/T3 or T3 alone.

How do they expect to prescribe levothyroxine alone to restore well-being and enable the patient to feel well again that puzzles me enormously.

For straightforward hypothyroidism thousands seem to do o.k. on levo but there are always others who are left stranded, especially if you don't have internet connection.

The fact that few doctors seem to have been educated of the purpose of the thyroid gland and, if it is removed, ensure we are given trials of options, i.e. restore health by prescribing again NDTs (natural dessicated thyroid hormones) (proven safety since 1892 onwards and restored many people's health)as it contains all of the hormones a healthy gland would do) Some people might still not feel well. Alternative is a T3/T4 combination or T3 alone.

Why are the 'organisations' making False Statements in order to remove certain replacement thyroid hormones which have proven time and time again since 1892 to restore patients' health and without the need for blood tests? Especially as it was the first to be prescribed and contained all of the hormones a healthy gland would have.

Why are so many GPs poorly educated - even endocrinologists? The fact (and I don't believe the following statement I was given is the only doctor to state/believe) that I was phoned to tell me that my TSH was too low - T3 too high and T4 too low.

I said 'but doctor I take T3 alone so my T3 will be high and T4 and TSH low' because I don't take T4. His response " but T3 converts to T4". Well what can one say after that statement so I said 'I'm sorry doctor that is not the case, T4 converts to T3 not the other way around.

madge1979
madge1979 in reply to shaws

🤦‍♀️

Mx🌹

I am sending you love ❤️ I often wish I had known more, not trusted my drs and kept my thyroid but tbh I had no idea what I set myself up for. I was told I would feel so much better. Well I didn't and it took 5 years of suffering and trusting my drs before I got a 2nd opinion, Dr peatfield bless him, I cried my eyes out and he said forget all that from today you will get better. Still took some time, my nutrient levels were low, desperately low cortisol and I was so ill on levo. I had gained 6 stone in 2 years, I was in constant pain, couldn't stay awake more than an hour and thought of ending it all. Things did get better, never back to the super fit sports woman I had been but a million times better. I am much older than you, mine was removed age 49 and I went straight into menopause, I am now 60! This really is a self help illness. You will get support and good advice here. Mine was not graves but having no thyroid is not easy. It does get better, not as quick as we would like but there is life after thyroidectomy. Xxx

I was very sad to read your story lau99. I don't know if this will help at all but usually a TT patient should be put on T3 only for 3-4 months. I say this because that is what my Endo put me on - but that was the only thing she did right. I then moved into a couple of years which appeared to be very much like what you are suffering. After my T3-only time ran out she said that she was going to now prescribe me "the good stuff". By this she meant Levothyroxine (T4-only) and it wasn't. She diagnosed me by TSH alone and when it reached about 2.0 (IU/ml) she said that her work was done and that I had been "cured" and that my symptoms were due to something else. Well, duh, yes they were I suppose, I couldn't convert T4 to T3 (the stuff you need for energy). She could have fixed this problem but for many reasons (to be found in this website) she chose not to. So, effectively, she abandoned me. I took matters into my own hands - going crazy and manic at times - and finally found a doc who would prescribe T3 as well as T4 in the form of NDT. It took me two years of studying, experimenting and blood tests which my sweet GP reluctantly agreed to do to get myself back on track.I would say that your first move is to get yourself some T3. Read up on how to get to the right dose - it is documented a number of times on this website. Get a source of blood tests (eg Horizon), monitor your progress and work it all out for yourself with help from some amazing people on this site. It sounds as if you have been plunged into hypothyroidism and you need to lift yourself out of it with T3 then perhaps NDT. This is indeed a horrible and frightening path to take but many of us have taken it. Many of us have no medical history/education but we have to read up on it and struggle through as if our lives depended upon it, because it does.

Keep posting here and take every step one by one. First step, get a blood test, publish it here so that you get the right information, second step sounds like find some T3 - but only do that when you have confirmed that you need it (from the blood test). Keep us posted of your progress.

Just want to add, please, please go through your doctor/endo before striking out on your own with treatment. The reason is that it gets the medics backs up if we assume they won't help or won't know how to . It's better for you for the medics all to feel that they are helping you, that you don't blame all medics for the 'faults' of those who treated you so badly. I posted above about my endo and think getting your own tests done is a good idea, but we have to be very tactful with the doctors to keep them on side. Unfair I know, they should be apologising to you, but we are looking at your whole future here and you sound a lovely person, I am sure you can handle this situation with tact and diplomacy for your own good.Sending you love and strength, we are here for you.

So sorry to hear you have been struggling and about the lack of support. I can completely sympathise with this post. On advice of endocrinologists I had RAI for a toxic thyroid nodule nearly 20 years ago, which damaged my thyroid, and I have often regretted it. I regularly think “if only I’d had surgery to remove the nodules” as my GP advised (so opposite to endos) then I wouldn’t have had all these long term health issues including longstanding insomnia. It feels as if I have had short shrift over the years from doctors who haven’t understood and dismissed as an over anxious woman. This is partly because of not knowing things and not finding out till later on, such as the affect caffeine has on thyroid medication. Unfortunately you have to educate yourself with this disease because the doctors don’t seem to know enough. And reading the comments on here there are many stories of regret and lack of good advice/support from healthcare providers. So you are really not alone. But like someone so rightly pointed out maybe there would have been long term issues with the other option. We just don’t know. The thyroid is such a complicated little thing and controls so much so all sorts of things can happen when it goes wrong. There’s a lot of sound advice on here, so I’ve got nothing more to add, but I really do hope things get better for you. ❤️

shaws
shawsAdministrator

Well lau99,

I am so very sorry you have reached a plateau in which you feel life is so hard that it is unbearable for you.

The majority on this forum agree with you as, once diagnosed, we are more or less left to get on with the disabling symptons because if optimally prescribed - with whatever suits the patient - our health should be restored. If not they are ignored and left in the lurch - doctors' faces fall if we enter the surgery. Many will be offered antidepressants instead of both 'frees' being checked (i.e. FT4 and FT3).

The fact is that doctors in a surgery - few, in any, have any knowledge of clinical symptoms or anything to do with the thyroid gland. I can confirm that for a fact, by what the doctor stated to me and I told him he was wrong. TSH of 100 being ignored and told 'nothing wrong'. Thankfully it was due to Thyroiduk - before this forum that paved a way for me to become symptom-free.

Another fact, too is that your gland was completely removed and I believe that someone who's had this procedure should be prescribed - at the very least NDT (natural dessicated thyroid hormones). This contains all of the hormones that a healthy gland would do but have been withdrawn despite it helping thousands of patients from 1892 onwards.

If still not improving and on an optimal dose then a T4/T3 combination should be trialled. Then T3 alone. They've withdrawn T3 being prescribed - except by an endocrinologists and many of those still wont prescribed T3.

It is not our fault that whomsoever the NHS sources from are making huge profits.

Unfortunately, through complete misinformations from those we'd imagine were knowledgeable T3 and NDT has been removed - without notice and no care and attention given to patients for whom the standard 'levothyroxine' does nothing to improve health or relieve awful clinical symptoms.

We used to get treated/prescribed due to symptoms but the 'modern method' is to look at the TSH alone. Considering this is from the Pituitary Gland why do they rarely test a Free T4 and Free T3 blood test as a 'right' as it is these two that can relieve disabling symptoms. Why do they insist that T4 is better than T3 i.e. T4 inactive - T3 active.

Why aren't GPs trained as our retired doctors were, i.e. knew all symptoms - sometimes just by 'looking at the patient' and prescribed NDT- no blood tests then. Just like when our young child isn't yet able to speak - we KNOW there's something wrong and they're unwell.

The last two of these doctors were Dr Skinner and Dr Peatfield (hunted like a criminal after years of restoring patients' health). He could no longer take the pressure so resigned his licences but could still 'advise' patients who sought him out and whose health he restored.

Both Dr Gordon Skinner and Dr P were pursued around the same time.

It certainly wasn't their patients who reported both doctors. So it must have been 'organisations' who made the decisions. Organisations you'd imagine were au fait in why they decided to become endocrinologists but somehow have lost the way. Just because a section of the human race cannot restore their health with levothyroxine, why have the 'options' (NDT since 1892 and saved lives from then on) been removed and T3 now forbidden so that patient can no longer trial T4/T3. or T3 alone. T3 being the Active Thyroid Hormone required by our millions of T3 receptor cells.

We don't have T4 receptor cells as it has to convert to T3 but a section of society cannot recover on T4 but those who have will certainly not be searching the internet for help/advice/support.

They should reinstate NDTs, T3 and/or T4/T3 to allow patients to trial them if they are still unwell on levothyroxine.

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