So so tired of trying to get well with such poo... - Thyroid UK

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So so tired of trying to get well with such poor results, 9 years on and I feel so depressed. (Graves’ disease) ( blood tests inc in post).

Erin60
Erin60

Is there anyone with Graves’ disease that has managed long term remission?. For 9 years I have tried and only managed 18 months remission. I try to do everything to help myself. With health, I don’t drink or smoke, eat well and exercise moderately, take vitamins etc.

Here are my latest bloods after 6 months on carbimazole 10mg and I am really getting worried that nothing will fix things.

When the alternatives are RAI or thyroidectomy, I believe neither of these will cure Graves Disease, maybe due to a lady I met at the hospital 4 years ago having bloods that told me she had a thyroidectomy for Graves, didn’t cure it but she put on 7 stone and deeply regrets the surgery. It feels so depressing to have to try and work so hard at ones health to never get well.

Does anyone have advice please. Here are my blood results:

37 Replies
oldestnewest

i could never stay in remission for long until I had partial thyroid op in my teens then I was in remission for 30 years, but then it returned with a vengeance and I had RAI.

In hindsight I wish I had had a total op as my sister did because that would have prevented the Graves kicking off again but I wasn't given the choice.

I don't understand why anyone would want to battle on with Graves when a solution is there, yes it results in being hypo but for the majority of people that's preferable.

Erin60
Erin60 in reply to bantam12

Hi, thanks for your reply and background, I appreciate it. It wasn’t even mentioned by the endocrinologist about a thyroidectomy until 1 year ago after 8 years, that’s when I mentioned the lady I’d met 3 years prior and I was told oh well it’s unusual and maybe she had other issues, but I cannot even think of putting on seven stone in weight I wouldn't cope with it I know that and that scares me so much. I also keep hoping a cure might be on the horizon.

bantam12
bantam12 in reply to Erin60

Putting on weight is not something that happens to everyone, I've never put any weight on at all, still size 10-12 and Im now 64, had Graves since I was 12 and been hypo for well over 15 years.

I don't think you should be basing any decisions on a random lady you met, she was probably undermedicated and who knows if she had other issues going on, you really can't take what she said as the norm.

Erin60
Erin60 in reply to bantam12

I believe I’ve had Graves since I was young also but it wasn’t diagnosed until I was 52 after horrendous consequences for me personally. I am also size 10-12 and am 61 . I can’t seem to get over the fear at the moment. But you are correct in that my decision shouldn’t be solely based on that encounter. I wish someone had told me 9 years ago and it maybe would have been my first option after one trial of carbimazole failed. But after such a long battle I feel so annoyed that These crappy 9 years have been for nothing and now that’s the option that would have saved 9 years of hell.

ling
ling in reply to Erin60

Frankly that's very rare to hear - someone who was not urged to have RAI or TT after a failed try at remission. Doctors seem to be forever pushing TT or RAI?!

Erin60
Erin60 in reply to ling

Well not for me, it wasn’t until October 2018 that it was suggested to me by a very well known and respected large teaching hospital .

Hi Erin

I have Graves and had my thyroid partially removed 20 odd years ago. It wouldn’t respond to treatment, was over active then under active so for me that was my only option back then. I was Young and desperately wanted to be better. I’m now on thyroxine but I struggle to maintain weight. I sleep loads. Brain fog is bad sometimes. I can get very lethargic.

I’m not sorry I had it removed I genuinely feel it has helped stabilise me. I don’t feel great all the time I have ups and downs with under-active thyroid disease. I now take 75mcg thyroxine. It’s not enough so I’ve upped to it by 25mcgs despite my GP saying I’m within the normal range. I know what I need. I got sick of arguing with GP about it so I did it myself.

I’m no expert to be able to comment on your blood results, sorry.

I hope someone else can. I just wanted to say you’re not alone.

Good luck 😊

Erin60
Erin60 in reply to earthmutha

Thank you for your reply, it feels such a hard decision to make for me, I’m totally scared of a thyroidectomy and the consequences afterwards that I don’t feel I can have any control over, I think that is what is really bothering me so much, the nhs in my 9 years experience is never about optimising health in any way it’s about crisis management and at the moment I feel a thyroidectomy is about the lesser of two evils except I won’t have any control if the thyroid is gone.

Erin, did you ever have TRAb or TSI antibodies tested? These are to confirm Graves disease.

Erin60
Erin60 in reply to ling

Yes I have, below are my results:

TRAb 82 iu/ml (0.0 - 60.0)

TSI 1.28 iu/L (< 0.56)

ling
ling in reply to Erin60

When were these taken?

Erin60
Erin60 in reply to ling

Both 3 months ago

ling
ling in reply to Erin60

Do you have TRAb and TSI results through the 9 years?

If yes, are they lower now than in the past?

Do they fluctuate a lot as well?

Aside from the time you were in remission and not taking your carbimazole, have you always taken your carbimazole consistently?

TSI was .99 in July 2108

TRAb was 62 in October 2018

They have both gone up. Don’t have 9 year results.

Yes i have Mostly carbimazole as propothyrocil caused neutropenia but looking at my results I think carbimazole has as well.

Were you ever checked for Hashimoto's?

Yes, the low white blood cell count is a serious concern.

No never, I did mention it once a couple of years ago and was told I didn’t have that.

ling
ling in reply to Erin60

Sorry I think I should stop here. I don't want to end up irritating you.

Perhaps a reason why it's been difficult to pin down the levels, could be that you have both Hashimoto's and Graves. TPO antibodies can point to either Graves and/or Hashimoto’s.

The low white blood cell count could be the reason you have to discontinue the carbimazole and have RAI or TT. However, if it's the case you have both Hashimoto's and Graves, the treatment protocol may be different?

I wish you all the best in your search for an answer.

Erin60
Erin60 in reply to ling

You are definitely not irritating me, I appreciate your imput and advice. Thank you

SlowDragon
SlowDragonAdministrator

Low vitamin levels are extremely common with Hashimoto's and Graves

Very important to test vitamin D, folate, ferritin and B12

Have these been tested at all?

Or recently?

What supplements do you currently take?

Are you on strictly gluten free diet?

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

All vitam levels are within range.

I do take vit d

Vit e

Vit a

Prn omega eye

Vit c liposomal

Olive leaf extract

Turmeric

I had tests for gluten and dairy and I tested negative for both, my endocrinologist told me it was not a good idea to eliminate these food groups because I tested negative?.

Hi Erin:

I am reading your post and am so sorry you are not making better progress despite your best efforts to get to remission from Graves. I am Graves and post TT 5 months now. I'll share a little bit about my experience with you. It is true that you will have Graves for life. It is also true that there is life after TT as well, and it does not necessarily involve gaining a great deal of weight. There are challenges without question - and I do not believe in sugarcoating anything. However, there are also certain benefits as well. Both sides need to be weighted before making decisions. And don't let anyone rush you into a decision about either RAI or TT. Most things thyroid move very slowly, so you have time and do not need to make a hasty choice.

There is clinical evidence to suggest that Graves patients fare better with a TT than with RAI. However, there are also people on this forum who have done both well with RAI and poorly with RAI. There are also people on this forum who have had good and bad experiences with TT as well. But - on this forum - we are usually those who have had problems with both, or are of the 20% for whom levothyroxine therapy alone does not work. SO.... here goes and sorry for the long post.

I developed Graves 2 years ago after having borderline hyperthyhroidism for 23 years and a toxic multinodular goiter. My goiter became so large late last November that it was crushing my windpipe and vocal cords. So I had no choice about surgery and it was considered urgent. My Graves also went into overdrive. I had terrible heart palpitations. I felt like a taser was being held to my body 24/7. I became so irritable and aggressive I have no idea how my wonderful husband could live with me. I could barely breathe from the anxiety. It was becoming unbearable. Not having a choice about surgery made things a lot easier in a way. I had been offered RAI when the Graves was diagnosed and before my goiter became so large and said no because I wanted to try remission. I went on Tapazole for 2 years and then became resistant to it at the same time my goiter blew up. I had no side effects from Tapazole and would have stayed on it had it not been for the goiter or my lack of response to it eventually.

Other than after my pregnancy 26 years ago, I am not and have never been heavy - although I do carry about 10 pounds more than I should - but am still considered within a "normal" weight range. Ironically, I gained 10 pounds before surgery because of the Graves - I couldn't stop eating - and then lost it before surgery because I was terrified of gaining weight afterwards. I have a serious back problem and any extra weight contributes to issues there. So, I share your terror of weight gain and inability to lose it.

So -- my TT experience -- I have a very skilled surgeon - and he did an amazing job. I had no damage at all to either my vocal cords or parathyroid glands the biggest risks - and he told me he was worried about that from the beginning in my case and considered my surgery high risk. My scar is barely visible now - it's just a little red and I use makeup when I go to work and it is invisible. I have a wonderful endo - and here's the key - I am on the right medication. Because of that, I have not gained one pound since the surgery. In fact, I lost about 3 pounds after the surgery and no weight has come back. I am at my usual weight - where I have been for the last 20 years post pregnancy. Weight gain is not a given. Please note this is NOT necessarily the experience for most people on this forum.

About the recovery - it has not been easy. There are times it has been truly awful. I cried incessantly for the first 2-3 weeks - and then once or twice a day until about a month ago. I broke out into huge hives 5 days after surgery and those continued until about 3 months ago. I had panic attacks so severe for the first month after surgery I thought I was dying. I was very weak and had to stay in bed for about 2 weeks after surgery.

It became evident about 3 months after surgery that I was not converting T4 to T3 and that Synthroid was not working alone despite increasing doses - so my endo put me on Cytomel (T3) and finally - I am so much better. I am not quite adjusted meds wise yet, but I am very close to finding my "sweet spot". I did not really start to feel well until about 3 weeks ago. Recovery can be very long. I am only just back at work - and it's not really there quite yet. But, I am hopeful because I can see progress and moving forward. It is still hard, though, to interact for long periods of time with people. But I'm better than I was a month ago, and continue to get better.

I never gained weight, even on levo monotherapy, though. I, like you, eat a good diet. It is low carb (I can't do gluten free - impossible for me), moderate protein, and lots of fruits and veggies. I drink 2.5 liters of water per day. I walk about 45-60 minutes a day when I can - but lately back is acting up from all the sitting I had to do while recovering from surgery, so I'm down to about 30 minutes. But I am working on that other project now too - I can only tackle one health issue at a time.

I wish I still had a working thyroid - but here's the thing - it wasn't working. Here's the good news about the surgery for me -- I no longer have heart palpitations, the anxiety attacks have disappeared, my skin has returned to normal (I had developed white pimples on my face and an awful rash on my back as well as skin so dry it was falling off my body and leaving white flakes everywhere), my hair is coming back (I was getting ready to buy a wig before surgery) and I do not have severe anxiety any longer. I can finally breathe. My sleep apnea has improved to the point where I may no longer need the machine because that huge goiter is gone. It is a relief. My husband told me yesterday that he thinks I have finally turned the corner - because he says I seem much closer to my old self than he has seen me in years and certainly since the surgery. The road has ben so long, but I see the results happening now and am so relieved. I have my bloodwork coming up next week - and I am so curious to see my thyroid panel and antibody tests. I hope they are good. Previous antibody tests were all excellent (none) so I remain hopeful. On balance, I do not regret the surgery.

I hope you feel better - and that you do more research here on this site and elsewhere about your alternatives. Graves is a very tough disease, as you well know. And there are no right decisions about what to do. I would never advise anyone whether or not to have surgery or RAI - that is a decision only you can make and a very personal one. It is so dependent on your health condition and what your doctors advise you to do. Please read the posts of pennyannie - she has great knowledge about RAI. And read the posts of fruitandnutcase who has gone into remission by changing her lifestyle and diet. ling also has a wealth of experience with Graves and great knowledge about the disease - check her posts.

Wishing you well and sending you positive thoughts today.

Wow, seriously thank you so much for such a detailed reply, I am blown away that you have explained so much to me, I appreciate it very much and really wish you well in your recovery and also fingers crossed for your blood work.

( just a point T3 isn’t available on the nhs and even when ones body doesn’t convert they are still experiencing such problems getting it prescribed in UK)

Greekchick
Greekchick in reply to Erin60

You are so welcome. And thanks for your good wishes - I really appreciate them!

I know how hard it is to get T3 in the UK just from what I read here. It seems that lots of people self source T3 from outside the UK. Some people also say here that you can get a trial of T3 in the UK under certain conditions. I live in Canada so I am not an expert on this. I hope someone else will post a proper answer for you.

Thanks again! All the best to you and keep us posted on your progress.

Hi, I think there are a few horror stories about weight gain after a TT. I didn’t have Graves, I had Hashis, so not sure if applies to you, but I have lost weight after my surgery. I have a lower appetite than I did before and can go much longer without eating. Before, if I didn’t eat for a couple of hours I’d be in pain. I also find I don’t crave rubbish foods like I used to. Immediately after the surgery you will probably find swallowing an issue and I just craved fruit, so that kick started the weight loss for me. If there is one thing I have learnt from this forum it’s how different we all react. I’ve just been for a scar make up lesson. Most things can be dealt with. I was told if I did put on weight there would be T3 to try. Mind, I have a high T4, as I had cancer, so that might be part of the reason I am slim.

Erin60
Erin60 in reply to JaneyJaney

Thank you, I am going to ask again about being tested for Hashi before I have to make a definitive decision. I’m sorry you had cancer and hope it was all caught in time and you’re all fine now.

JaneyJaney
JaneyJaney in reply to Erin60

Awh thanks. Honestly for me Hashis far far worse than the cancer.

ling
ling in reply to JaneyJaney

Janey, would it be alright to share how your cancer was diagnosed?

And how the Hashis is worse than the cancer?

Thank you.

Hi there Erin,

We talked a little some 5 months ago, and I was secretly wishing things were looking up for you.

So, it's not like you haven't tried is it ? This must have been very wearing on your whole body both physically, mentally and psychologically and emotionally.

Nine years is an awful long time living with the debilitating symptoms this disease can throw at you, and ultimately this is your decision time.

Probably just having posted this, has formulated your thoughts about your next step.

I know you will have done the research and accept that a thyroidectomy is the better of the two options open to you.

No one looks forward to surgery, a vaccine would be wonderful, but it's the here and now we are looking at, and we don't know when, if ever, it will appear, and every year puts additional, extra strain on your body.

It is true the NHS is loathe to write prescriptions for anything other than Levothyroxine.

Is it worth discussing your concerns with the endocrinologist, asking if your ability to convert the T4 to T3 is compromised and you are unable to find a acceptable level of wellness, can he confirm, in writing, that you will be offered both T3 and T4 thyroid hormone replacement.

Ultimately Erin, you need to make the decision that is right for you at this point in time in your life.

Take good care, and thinking on, if nothing else, I've a source of NDT that is doing very nicely for me !!!

Thank you very much for your reply, ultimately my definite decision would be thyroidectomy as I don’t want RAI. I just have to get over these 9 years of trying before I succumb.

I stayed in remission for about 9 years and the all of a sudden graves came back with a vengeance. The endocrinologist said that once it came back for a second time, then it was here to stay. Once a goiter appeared with nodules I was basically given a choice of surgery or RAI. The carbimazole was just masking the symptoms in the end and my mental health was suffering so I chose the RAI route. It wasnt pleasant because it worked instantly which noone was prepared for as it can take 6 months to stop the thyroid completely. If I had to choose again I think I'd go for surgery. I'm digressing bit there may come a point when you have to choose the best route for you. None of them are pleasant and the symptoms of being hypo are far worse I found than being hyper, but the alternative of leaving it untreated could have been even worse.

10mg is a relatively low dose so maybe you need another blood test if it isn't working. Hang in there as my graves went into remission the first time after being on carbimazole for a year and it lasted for 9.

ling
ling in reply to FarmerDJ

What was it like when you relapsed after 9 years?

FarmerDJ
FarmerDJ in reply to ling

At first I didn't notice the graves come back as it was a slow and gradual shift. It was only after a blood and liver function test for another long term medication that I'd been on that they found my liver wasnt functioning properly so I was sent for a scan. It all got a bit complicated after that as they found an ovarian and adrenal cyst as well as very high thyroid antibodies. My moods had become very stressed and eractic and the sweating had returned. That was when I was referred back to an endocrinologist to see if it was the adrenal gland or the graves causing the issues. After a year of different pee collection tests and various scans they decided it was just a fatty lump and that it was the graves causing the problem with thyroid and I decided that it needed dealing with for the safety of those around me. I was feeling increasingly violent and sleep was a problem making the anxiety worse so I knew something had to be done. I chose RAI as it was the least invasive or so I thought. I wasnt prepared for what followed with the hypo phase but I am looking forward to the day the meds have it under control, hopefully by my next adjustment. It's been a long and mentally draining haul to say the least.

ling
ling in reply to FarmerDJ

Man, that's some journey! Thank you very much for sharing it.

Was there any trigger/s for the Graves?

The goitre developed after the relapsed Graves was diagnosed?

FarmerDJ
FarmerDJ in reply to ling

There was no noticable trigger, possibly due to a virus but who knows really. It wasnt anything I'd specifically done or could have avoided. The goiter seemed to develop quite late but I'm guessing was there around the time of the relapse but wasnt so obvious to me until it was pointed out by the endocrinologist. It wasnt huge as only the right side was enlarged.

ling
ling in reply to FarmerDJ

Thank you.

Was your thyroid panel out of range before your relapsed Graves was diagnosed?

Is it alright to ask what your other medical condition is, the one for which u are on long term medication?

I have no idea about the thyroid panel as the citalapram I was on for severe PMS had wrecked havoc with my liver so I had to come off of it.

ling
ling in reply to FarmerDJ

Thank you very much.

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