[Kimberly]

#1169951

WOW, Rebecca, what an unexpected turn of events. Sounds like it’s a good thing you went in for surgery when you did! There is a wonderful organization here in the U.S. for Thyroid Cancer survivors called ThyCa. They have a lot of great resources on their web site, which is: http://www.thyca.org/ (You will need to use your browser’s "back" button to return to the boards after viewing).

One question to ask your docs is whether they feel a course of steroid therapy is needed to help protect your eyes. For Graves’ patients, RAI is considered a "risk factor" for worsening of the eye disease; however, I’m not sure if the fact that you no longer have any functioning thyroid tissue changes the approach. It’s at least worth asking about.

Take care — and keep us posted!

[catherine]

#1169952

Hi Rebecca

Wow ~ I’ve had my head in the sand for a month and a half and you’ve been through all of this!! I’m so happy you’ve finally found the truth and are being treated with the dignity, respect and attentiveness you deserve. I can’t write what I’d like to about your previous doctors and the care you received as I may be banned from posting again!!

Yours is such an amazing story, I’ve read it from the beginning again this morning. Being told about the cancer must have been scary, I feel for you I really do. For me that is one of the things at the back of my mind that can worry me and cause me to choose to forget about my GD completely for as long as my emotions and memory allow.

I’m at work at tho mo so this is just a quickie really to check in and say hi. Sending you lots of healing thoughts. Take care, will write more later.

Catherine
xxx

[RebeccaJT]

#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

[Kimberly]

#1169954

Hi Rebecca – I’m so sorry to hear that you are struggling with finding the “sweet spot” of replacement hormone…and that you are still having issues with the web site. Hopefully, our tech expert can find something in your settings that is causing the issue.

Have you visited the ThyCa web site? They are a group for thyroid cancer survivors, and although they don’t have an in person support groups in the UK, they have a lot of online resources, including online discussion groups. That might be a good resource for you as you prepare for the RAI ablation. Their web site is:

http://www.thyca.org/index.htm

[size 10](Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

I’m sure that living with your parents right now is challenging, but at least that will certainly help with financial stress. Hopefully, you will come out on the other side of all this with renewed health and energy. Wishing you all the best!

[snelsen]

#1169955

Hi Rebecca, I just re-read your posts, want to be sure I am up to day.
I do agree with you about the new website, I am not fond of it either. It is better than it was, but I continue to write to them with issues I have had.

So, briefly-you had the thyroidectomy. I am not a bit confused why the plan is to have RAI ablation on 3 April. Of what? Are you referring to your eyes? Presume you are referring to your thyroid, but am thinking you just had surgery to remove it in December. Please get me straight on this.

I am SO SORRY you feel like crap. It must end. Your symptoms

Now, your second paragraph that says you saw the nuc med doc who increased your thyroid replacement to 200mcg? Is this correct? But, that is not very consistent with having your TSH completely suppressed, I don’t think. Maybe one of the facilitators and you can straighten me out on this.

I would think that this strict diet would add to the stress you are experiencing. You’ve had the celiac test,and you don’t have celiac disease.
It seems easier than what you are doing, food wise, to eat a reasonable diet, and eliminate wheat for 3 weeks or so. That should answer for you if gluten is a problem for you. Usually, the symptoms people have when they have problems with gluten, are a big belly ache, loose stools, just to simplify the issue. So, I am not sure of your symptoms, or if you have them. You might like to begin eliminating dairy. Don’t eat dairy for 3 weeks or so, see if you feel better than what you felt before. Aside from celiac disease, which definitely requires a major change in diet, with medical management involved, I think it is more of a trial and error thing. If you feel crappy after you eat dairy, don’t eat it, and get some lactose pills to counteract that piece of cheese. Same for gluten and wheat. How do you KNOW you have developed dairy and lactose issues? These are just questions for you think about.
You will be able to save money by living there for a while, and I am sure you will move out when you feel better, are able to work, and you get a place to live that is cuter than the last one.
Do write again.
Shirley

I have heard of the kind of exclusion diet you are on, it seems that it is a fad in the U.S, and everybody and their brother is on it, for no particular reason. Most give it up in a hurry, which to me is easy to understand.

Any particular reason you are off sugar?
A comment-I am pretty sure that 24 hours is not enough time to evaluate anything related to adding or subtracting a food.
I realize that your surgeon is the one who has turned you on to this, but generally speaking, it is not in the ballpark of knowledge and experience. I’d think a good dietitian might better serve you.

And the very first thing for you to consider, is if you have symptoms,and what are they.
Re constipation. I am wondering if this has always been a problem for you. It has been for me. I have to really watch it, eating tons of vegetables, bran and stuff, drinking lots of water, and sometimes taking a stool softener regularly, like every other day.

Regarding your TED, it really pretty independent of your Graves’ and doses of thyroid hormone will not impact the course of TEd one way or the other.

Everything I have rambled on about here, you can check with you doctors.
I just hate to see you on this brutal exclusion diet with all the stress you ahe been having, with job, moving with parents, and of COURSE that is tressful for everyone.

[Kimberly]

#1169956

Hi Shirley – Hopefully, Rebecca will chime in, but just a quick note that she was also diagnosed with thyroid cancer, which was discovered after her thyroidectomy for Graves’. That’s the reason for the subsequent RAI ablation and the need for TSH suppression.

For anyone who is having technical issues with the forum, a tech expert will contact you if you can fill out the following form. The information on the form will help speed up the troubleshooting process.

[size 10](Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://gdatf.org/about/contact/technical-support/

The GDATF is very serious about soliciting feedback from members on all of its offerings (bulletin board, conferences, etc.). The Foundation offered members of the old forum a chance to preview the new site prior to the new launch. We received very little feedback, but all of the suggestions made were incorporated. Additional suggestions can be submitted to info@gdatf.org and I can assure everyone that your suggestions will be reviewed and incorporated where possible.

[RebeccaJT]

#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

[snelsen]

#1169958

Hi Rebecca, it is so nice to hear that you are moving out to your own flat, moving forward, and definitely much, much better and happier than when you wrote your very first post.
I have two thoughts.
1. Because you have reservations, you can consider canceling the RAI, and/ or postponing it indefinitely. The choice will still be there.
2. i know you are interested in evidence based information, not crap on the internet. Have you explore the appropriate sites for learning the information you say you have learned? I’m referring to the following paragraph in your post.

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.

What/where were you reading this? Valid, accurate and evidence based?

The only other thought I have is that I know three people in similar situations as yours, and they had throidectomies, all with small tumors, and none had RAI. I will check with the one person, see exactly what her experience was, for it was about 20 years ago, she is in her late 40’s now. But all of this is anecdotal, as I am sure you realize.

Do write again.
Shirley

[Kimberly]

#1169959

Hi Rebecca – Thanks for checking in! The standard practice with thyroid cancer used to be to treat *all* patients with RAI, but now there is some controversy as to whether thyroidectomy alone should be used for patients with who are considered “very low risk”. Here is an article that was published by the American Thyroid Association, although this one was specific to papillary cancer:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patients/ct/volume3/issue9/ct_patients_v39_3_4.html

You might check with ThyCa, the thyroid cancer survivor’s association, to see if they have info that is specific to follicular cancer. You can visit their web site at http://www.thyca.org/

Take care – hope you are able to get your flat rented out quickly!

[RebeccaJT]

#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]

#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

[snelsen]

#1169962

good job. be at peace with yourself. You are not closing a door forever. But making a decision i think you have already made. Plenty of time!
Good references. I wrote to my friend in France, but she is on a holiday until 4.11, not answering emails. Good for her!
Shirley

[RebeccaJT]

#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

[Kimberly]

#1169964

Hi Rebecca – Good to hear from you! Hopefully, you will get some responses from others who have been through surgery, but my guess is that every patient’s experience is a little different in terms of when they feel they have finally “turned the corner.”

It sounds like you are doing a great job of being your own advocate and staying on top of your situation to make sure you are getting the best care possible.

One think that jumped out at me was the iron supplementation — hopefully, your docs explained that iron is one of the substances that can potentially interfere with the absorption of replacement hormone, so it’s recommended that you space them at least 4 hours apart.

Take care!

[RebeccaJT]

#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

[Author]

Posts