[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169966

Just a gentle bump – I’d really appreciate some feedback from others regarding their TT and whether where I’m at six months post op is about on track or whether I now need to start pushing a bit to get my symptoms taken very seriously.

How long does it take until you really start feeling better? Obviously anything is better than Hashitoxcosis and Graves but you know what I mean …

Thanks

Rebecca

[RebeccaJT]

in reply to: Thyroid Surgery #1172336

Hiya

Welcome. Yes I have, I’m six month’s post op and doing OK. Not perfect to be sure but then, I was really very, very ill by the time I consented to surgery and found a doctor I could trust.

It’s the best decision I ever made – and I say that knowing full well how not-perfect a solution it seems.

However, I’m in the UK and you are in America and your treatment options post surgery are way, way better than they are here and you have Armour readily prescribed should standard hormones not suit you, and a generally better understanding of this illness in your medical system.

You can read my whole story on ‘What to ask a surgeon re thyroidectomy’ on the board. And bear in mind, I was a bit of a ‘low bottom’ case by the time I got to surgery, my story is complex and long. And most people have a far simpler time of it. One lady I spoke to was up, out and jogging within a week of surgery – I think she’s already been mentioned, lch11 or something like that.

Good luck to you,

Rebecca
x

[RebeccaJT]

in reply to: Not Stabilizing on Tapazole #1172270

Hiya

They would bring your levels right down with Lugols iodine pre op to shut the thyroid down and slow down the blood supply. Don’t worry about that. Make sure you get a surgeon who is an endocrine specialist and has ideally done more than 1,000 operations. Ask questions, and ask who and how you will be followed up and cared for ….

I’ve had a thyroidectomy and whilst life is not perfect, like someone else has said on this thread, knowing what I know now, I’d have done the surgery at the very beginning. This is a miserable disease and it turns out I was misdiagnosed for twenty years, my thyroid was destroyed beyond repair and living through it’s ‘death rattle’ as it spat out hormones was horrific. Plus the INFLAMMATION in your gland can cause 70% of your symptoms regardless of your blood ranges. I was hammered into the ground on Carbimazole and was hypo if anything and still felt dreadful.

You say you’ve ‘had’ Graves three times. Actually you’ve probably always had it and you will always have it – whether they take your thyroid out or not as it’s an autoimmune disease that attacks your thryoid. It will in all likelihood settle down once it’s favourite attack site is removed but you will always have Graves. It might have settled down and flared up a few times over your life too, but it never left you. That’s a tough reality to face with this illness. We have Graves.

Have you had your antibodies tested for Hashimotos disease as well? In my humble opinion there are far more people wandering around with T3 toxicosis being missed in endocrine medicine, it’s what makes you feel so insane. I had both conditions running concurrently and boy was that one party you would not want an invite to! I couldn’t have RAI as I had TED (not that I’d have done it anyway).

I spent two years really trying for remission but remission is very rare and to achieve another remission after a relapse is even rarer. I did and still do all the alternative and lifestyle changes you mention (you might also want to look into Hashis and the gluten connection) but if I had my time again I’d take the surgery without hesitation the moment it was first mentioned.

That said, that’s just me and my opinion. You can read my entire story on ‘What to ask surgeon re: thyroidectomy’.

Best of luck to you

Rebecca
x

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169965

Hi Kimberley

Thanks for responding, nice to hear from you too. Yes I did know about the iron and the four hour thing. Apparently the same is true of calcium which they didn’t tell me as I left hospital after the op – I was on huge doses of calcium and nobody mentioned not to take it with thyroid meds! Fortunately that was only short term.

But thanks, yes fighting my corner. The GP has just rung and has referred me to a haematologist for the iron infusions so hoping that’s the culprit. He was extremely rude and he interupted and said, my job isn’t to listen to you, my job is to write a letter… so that’s all hope blown for the next thyroid patient he meets. He was too busy complaining that this is only the third referral for an infusion he’s ever had to make … blah blah blah.

Honestly, care in the UK is shocking for thyroid illness – they just think we are a bunch of fat, moaning, lazy, neurotic whingers … it makes my blood boil. But anyway, I got the referral so that’s what matters.

But thanks again,

Rebecca
x

[RebeccaJT]

in reply to: Dark Patches On Face??? #1172241

Might also be worth checking out your adrenals, adrenal fatigue and thyroid issues go hand in hand and I’m fairly sure darkening of the skin can be a symptom.

Rebecca

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169963

Hi Folks

Sorry for the sporadic contact, it’s still up and down at this end. So to bring you up to speed, I’ve refused the Radioiodine remnant ablation with the complete support of my surgeon who says in the USA I wouldn’t even be offered it for such a low risk, well differentiated case of ThyCa such as mine. Plus the TT and total TSH suppression also mean my prognosis is incredibly good. Back on 9th July for more thyroglobulin and TgAb tests (so far all zero post TT) and another neck ultrasound. They will continue to monitor me and I can change my mind if I want but for now I’m happy that I decided not to do the ablation.

However, I’m really struggling generally. It turns out I have rock bottom ferritin levels despite heavy supplementation with ferrous gluconate for six months. My GP is not interested really as my haemoglobin is normal, so I’m not technically anaemic, but my surgeon has stepped in to say he agrees with me that it’s probably the cause of my energy crisis and he wants me to have iron infusions. Waiting to hear from the GP now the letter has gone from my specialist. Suspect they’ll argue first and then comply. I’m totally exhausted, not losing weight, still very foggy and lots of other hypo symptoms despite now being on T4/T3 combination therapy (150mcg T4 and 25mcg T3). I just feel like cr@p!

My vit D3, folate, calcium, and B12 are all back in range (very healthy in fact) but my TFTs are showing a suppressed TSH but mid range FT3 and FT4. This is consistent with what I’ve read about ferritin – it’s connected to thyroid hormones not getting into the cells to work properly – so I sort of feel hyper and hypo at the same time.

They are also referring me to a gynae as my periods are still heavy (so more iron lost every month) and have become irregular again since the intro of the T3 about 8 weeks ago. However I’m also getting some support from a lovely GP and holistic doctor / nutritionist who is helping me with diet and supplements and he reckons once my iron levels are sorted, my thryoid uptake and utilisation will improve, and the whole system will correct itself. I’ve been reading a lot and this does seem to be the case.

I’m also not losing any weight which is most disconcerting as I’m carting around 40lbs of extra weight for the third summer and my confidence is really low. I feel so down on myself – no doubt not helped by wonky hormones. However, I do seem to look a bit better so I’m hoping I’m putting on a bit of muscle (doing gentle yoga and walking). My hair also seems to be growing back a bit, I have a lot of short wispy hairs when I tie my hair back. Also this really odd solid type of ‘fat’ on the top of my arms (very noticeable and chunky) suddenly seems to be dissolving – I think this is connected to absorption (see below).

The good news is my diet is better – no wheat, gluten, dairy or sugar and I’m avoiding other foods that cause a reaction. It was really boring getting here but I now have a reasonable list of ingredients and am eating well. I’m loving digestive enzymes and Betaine HCL (for low stomach acid) seems to be working wonders – I’ve only been on it for ten days but my meds feel stronger, and I think I’m absorbing (my very high dose) easy iron better – I’m taking Higher Nature Easy Iron, Bluebonnet Easy Iron, and Spatone to a dose of 200mg elemental iron a day. Again I’ve been reading up and low stomach acid and thyroid illness go hand in hand.

Sorry this an essay but I just wanted to check in. I’m six months post op, am I about on track or do I need to start worrying??? Most days hope remains intact but some days are really difficult and I think, oh dear God what have I done?????

I’m really tired of fighting all the doctors – my surgeon is lovely but my access to him is limited, and I’m finding the GP is a bit clueless and not too interested, despite me taking paperwork with me… the receptionists are even worse (is there a special course they send them on????)

Anyway, I’ve missed you guys!

Love

Rebecca

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169961

Bless you shirley

I’m looking here and elsewhere

http://jcem.endojournals.org/content/early/2012/02/16/jc.2011-2512.abstract

and here:

http://www.bloomberg.com/news/2011-08-16/radioactive-iodine-risks-may-outweigh-benefit-for-some-tumors-study-finds.html

99.9% decided not to do it,

Luv

Rebecca
x

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169960

Bless you shirley

I’m looking here and elsewhere

http://jcem.endojournals.org/content/early/2012/02/16/jc.2011-2512.abstract

and here:

http://www.bloomberg.com/news/2011-08-16/radioactive-iodine-risks-may-outweigh-benefit-for-some-tumors-study-finds.html

99.9% decided not to do it,

Luv

Rebecca
x

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169957

Hi Folks

So sorry radio silence, thanks for your lovely replies. lots going on here – been sorting out my flat in London so I can rent it out again and start earning money rather than costing it. I’ve been decorating and dealing with gardners, builders, plumbers etc.

In brief – I’m due in hospital on Tues for my I131 ablation to – as I understand it – zap any remaining cancer cells and tissue.

However, the more I read, the more doubtful I am about this course of action. I’m seriously considering not having the treatment. From what I’m reading, given I was a stage 1 tumour, with no margin involvement, it was follicular, it was under 2cms (just, at 18mm), I’m young and it wasn’t in my lymphatic system and i’ve had a TT – the odds are extremely good that I will a) not have a recurrence and b)not die from it if I do. There seems to be some controversy on the use of RAI in patients like me.

I appreciate there are risks and benefits with something serious like cancer but I’ve been reading taht RAI is taken up by cells other than the thyroid (breast tissue, the brain etc), and people report hair loss, skin loss, gut issues, serious allergy issues, immune problems, loss of taste, tiredness, and on going problems.

I want to know – what evidence is there (not what the doctors say, but what evidence) that I am better off having it than not having it – bearing in mind the above and that I’ve already had a TT and I’m TSH suppressed?

Sorry to be so brief, but I realise I’ve been trying not to think about it and now I have to make a decision. The other HUGE thing scaring me is I’m nearly 40 and don’t have kids. I appreciate the medical profession don’t think there’s an issue but I’m reading about women who do think it’s been a factor in their not being able to conceive.

I’d really like to hear some experience and read some data.

Thanks

Lots of love to you all, will write properly soon.

Rebecca
xxx

[RebeccaJT]

in reply to: Methimazole: How much is a lot? #1170735

Hi both

First of all let me begin with a caveat, I am NO WAY suggesting that you should not take your meds or that your doctor has your dose wrong. Being hyper is seriously dangerous and needs to be controlled.

However, here in the UK I was told that 40mg is usually the dose they use to totally shut down the thyroid. We have a treatment here that is less common in the States called block and replace – where they block the thyroid with one drug and artificially replace the missing thyroid hormones with synthetic hormones like levothyroxine. The dose normally required to shut the thyroid down entirely is 40mg.

At one time I was on 60mg of Carbimazole (the UK equivalent). This is a very high dose. I was very, very toxic indeed – my thyroid was really out of control.

I would suggest if you are on 40mg or 60mg and your T3 still is going out of range you ask your doctor to test for hashimotos disease as well as Graves. I had hashitoxicosis, which meant I had intermittant T3 toxicity. So my T4 dropped like a stone and my T3 was still swinging around. This could not be controlled with drugs.

Keep taking the meds but ask your doctor what the game plan is – in my case I wish I’d pushed harder for a really really clear diagnosis. Also I had a very seriously inflamed thyroid and thyroid cancer so a lot of my symptoms were not related to my blood levels – so even when hammered back into normal ranges by very high dose ATDs I still felt very, very unwell and indeed I WAS dangerously unwell.

If my endo had listened to my questions about Hashis (I’d worked it out myself way before he did) and done the tests I’d have been spared over a year of hell on a drug regime that had no chance of working for me. Again I’m not saying this is the case with you at all but there’s no harm in asking questions.

I hope that helps.

Rebecca
(Thyroid warrior! )

[RebeccaJT]

in reply to: A question about Thyroid Storm before my dr appt tomorrow #1170619

Sarah

Just to wish you well and to chime in with others. I really identify with your story but you sound like you have a kind, caring and competent doctor. I was on ATDs for a long time and I wish now I’d taken the surgery route much, much, much sooner as chances of remission with Graves are low, and my thyroid was so badly damaged and destroyed and swollen and inflamed it was beyond hope of repair.

I did get a lot of pain in my neck – if you imagine, your antibodies are like an invading army that are attacking your thyroid. So no matter what your heart rate, or your thyroid blood levels, those pesky antibodies are still attacking. That can cause inflammation and swelling in your thyroid and can cause you pain. Your doctor is already on the case I think, as you mentioned you are having an ultrasound next month.

In my case I also had thyroid cancer (which is eminently treatable I might add) and my doctor told me that the Graves disease and other autoimmune thyroid diseases I had would, left untreated, have killed me far sooner than the cancer! I don’t say that to scare you but to help you perhaps see that you are really, really very poorly – Graves disease at the level you are experiencing it is a very serious illness and you deserve all the care and attention you need to get better.

Without re-reading your whole thread I can’t remember if you’ve had antibody tests to check for Graves and Hashitmotos thyroiditis? I had something called Hashitoxicosis as well as Graves which means my problem couldn’t be controlled with drugs and I needed surgery – my thyroid had gone completely beserk and was spitting out hormones of its own accord despite a hammering with ATDs. If I had known this sooner I’d have made different decisions. An ultrasound and a full screen of Graves and Hashis antibodies would have made this clear.

Also the inflammation of your thyroid can cause all sorts of symptoms independent of your blood results, so this again can make you feel ill. My thyroid surgeon said that 70% of symptoms are caused by the inflammation in the thyroid, this means you can get all kinds of confusing symptoms even when your blood tests are back in normal ranges. This is when less competent doctors start blaming the patient rather than putting their thinking caps on!

Finally, our bodies don’t like our hormones being messed around with and for people like us, with very high and toxic levels it’s like being in a 20 tonne truck, going 100mph and then suddenly slamming on the brakes. You can imagine the hiss, and burning rubber, and sudden, grinding halt. That’s what’s going on in your body, as you screech to a halt – your brain chemistry and body chemistry will be all over the place. I felt very weird on ATDs – so that’s normal. Some days I just went to bed.

Sorry, I’ve written you an essay. But I just wanted to say please give yourself huge, huge, huge doses of love and nurturing, you are very ill, you deserve special care and attention. As others have said, there is no wrong way to do this, that’d be like telling someone with kidney failure or heart disease to pull themselves together. Everything you are going through is part of the illness, and it’s all allowed. This is an important time.

Take good care,

Best wishes

Rebecca
x

[RebeccaJT]

in reply to: Hair loss #1170408

Just to chime in that low iron (ferritin) levels are also a cause of hair loss and I have chronic low iron and will be on life long iron support. Low iron goes hand in hand with thyroid issues, particularly as a lot of us seem to have issues absorbing all the nutrients we need from food. It might be worth asking your doctor to do a ferritin test.

Rebecca

[RebeccaJT]

in reply to: I need advice with my unaproachable and condescending doctor #1170442

Hi

I am in the UK and I have had one hell of a time getting diagnosed and then getting treated. I’m sorry to be direct but given care in the UK is so appalling I’m going to just come out with it – you sound under-treated to me – the symptoms you list are hypo symptoms – and also I’m wondering why you’ve not had scans etc to see whether you also have thyroiditis and I agree that antibody tests are crucial to see whether you have Graves and / or Hashimotos disease – another form of autoimmune thyroid disease.

I have an utterly brilliant doctor who is based in London – he sees people in a private clinic (think the hit US TV series House, his clinic is to help people get the right diagnosis) and he is also the consultant endocrine surgeon at a world renowned teaching hospital. He is also human, humble and has a brain like a giant computer. His exact words to me ‘GPs and endos don’t know what they are talking about’ – seeing him was like going from night to day! Given that I had a ferociously inflamed thyroid and thyroid cancer to boot, that man saved my life.

You could see him privately in a matter of days and I promise you he will sort you out, the man is a genius. You can also read my story on the thread, ‘What to ask surgeon re thyroidectomy’ – there are still a few bumps in the road but let me tell you right now, THE ONLY THING THAT IS WRONG WITH YOU IS YOUR THYROID YOU ARE NOT MAD, MENTALLY ILL, NEUROTIC, HYPOCHONDRIAC or any other patronising label that lazy doctors slap on patients they don’t know how to treat. Plus in my humble opinion fybromyalgia is a junk diagnosis given by incompetent doctors who don’t know what they are talking about.

I’m sorry if that is a bit forthright but I get so angry at the way thyroid patients are treated. I’m afraid you are going to have fight to get the right care, and you will need to get your head around all the ins and outs so you are an ‘expert patient’ but you are most definitely in the right place to get sorted out – there are some wonderful people on this forum and some great advice.

Don’t give up, it is possible to feel well and that is your right, this disease is VERY treatable, it just requires your doctor to get off his backside and do his job. And if your GP won’t do that, get another GP.

Best wishes

Rebecca
xPS feel free to send me a private message if you’d rather.

[RebeccaJT]

in reply to: What to ask surgeon re thyroidectomy? #1169953

Hi Everyone

Long time no speak, I confess (no offence to all those lovely technical people slaving away behind the scenes) that I really don’t like the new forum layout and find it incredibly annoying so haven’t been logging on. They ruined our forum!!!! I have finally emailed the technical people to see if there is something wrong with my settings.

I am struggling. I saw the nuclear medicine lady yesterday who was brilliant, and they are putting my dose up to 200mcg as I’m so used to being toxic that she feels I’m not on enough thyroxine. Also I need to be totally TSH suppressed. I am not feeling well on thyroxine I have to say (alternating dose of 150mcg and 175mcg) and I’m still constipated and not losing any weight.

I’ve seen other posts on here that I need to read in detail and reply to at length, but I think I mentioned that my surgeon believes that there is a strong connection between autoimmune thyroid disease and gut and food intolerance problems. Indeed my friend who also had hashis, graves, cancer and total thyroidectomy also sees a bowel surgeon and he agrees that a negative coeliac test does NOT rule out gluten and wheat issues, it just means you are not a coeliac, or your antibodies are just under the threshold for a positive test. I also seem to have developed severe dairy and lactose issues. My surgeon says food will have a profound effect not just on mood and emotions but absorbency. This means I’ve been on a gruelling exclusion diet on and off since November – some allergen is creeping in and I can’t work out where it is coming from. I need to perhaps try some different forums if anyone can recommend one but I’m currently sugar, wheat, gluten, and totally dairy free. It’s very boring.

There is definitely something in it as when I eat just potatoes and avocados – the baseline elimination phase – I can most definitely feel my metabolism go up. So I know he’s right but even adding in one item a day seems to not be clear enough – I think some reactions take longer than 24 hours to show up, so I’m getting muddled.

I’m also due for my Radioiodine ablation on 3rd April and will be in hospital for two days. They will be giving me Thyrogen (recombitant human TSH) injections thank God, rather than taking me off my meds (because of my TED). My eyes look a lot better and my double vision is improved but seems to swing around with my diet (absorbency)?

I’m still not working and it’s now about 10 or 12 weeks since the procedure and I’ve just been through the heartbreaking process of giving up my home and moving back with my mum and dad (not the most stressfree environment).

I saw the doctor yesterday and sobbed my heart out – I’ve been ill for the WHOLE of my thirties, I’m now poor, out of work, fat and cross eyed and living in my parents spare room. I HATE IT. I HATE IT. I HATE IT. I’m really at the very end of my endurance and I need it to get better.

Some words of encouragement and some help would be most gratefully received.

Thanks, sorry to take so long to reply.

Rebecca
x

[RebeccaJT]

in reply to: Too many meds, no relief. #1170077

Hi

I am writing from England and it is very late here so I will be brief and I will write again tomorrow but yes I identify! I also have hashimotos disease, hashitoxicosis, serious inflammation in the gland itself as well as wonky thyroid hormone levels. This meant I was turning up normal results and feeling INSANE. Incompetent doctors were also telling me that it was all in my mind.

Please do not lose heart. It sounds like a proper screen of your antibodies, and scans etc are needed if they have not been done already. I’ve also just had all my sex hormones checked and they are connected, mine are low, which creates havoc with my monthy cycle (I am not quite 40 so not yet at peri-menopause).

I have a (very long!!) thread called ‘what to ask surgeon re thyroidectomy’ but the earlier posts, when I first sought a second opinion might help you. Please feel free to ask any questions – on the board or by PM.

You are not crazy. I’d spent years in therapy being told I had panic and anxiety disorder. All rubbish, there’s nothing wrong with me apart from thyroid illness!!! Also my surgeon told me that there is a massive link with autoimmune gut problems and GD / Hashis – they’ve mapped the genome and the weak spots are the same for both. You therefore may well have a proper autoimmune gut issue like coeliacs or Crohns, or a food intolerance or absorption issue (your doctor should also be checking your calcium, vit D, B vits, ferritin as well as gut antibodies).

I hope that helps. If you have an inflamed and toxic thryoid, as I did, then it wont’ really matter what your blood results say, 70% of your symptoms will be from the gland itself. I’d been ill for so long that my thyroid was destroyed beyond repair.

More tomorrow,

Best wishes

Rebecca

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