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#1 Celticghirl

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Posted 02 February 2010 - 05:17 PM

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Hi all,

 

I was diagnosed with GD at the beginning of last yr but looking back I think I`ve had it for years.I can honestly
say the last yr has been the worst ever, started on Carbimazole Jan 09 and by Mar I had gained 4 stone, no one
told me I was hypo until at end of tether I asked for my blood results FT4 7 (range 9-21).
This was in July and on questioning docs, endo and anyone who would listen I was told these were perfect levels!
I stopped the carbimazole against their advice, wrote a letter complaining and asked for a second opinion as at
that point I actually thought it was Hashi`s I had.
I had first went to doc in Sept 08 as I was gaining weight, constipated, back pain, mostly hypo symptoms really
and they tested my Thyroid. It came back with mild T3 toxicosis so they left it and said to retest in 2 months.
The next one came back same though levels had dropped a bit, antibodies were tested (only TPO at this point)
they came back at 2095 so was referred to endo.
All downhill from there, I didn`t realise at the time my levels had actually dropped into the normal range then
but she started me on carbimazole 40mg.
She also tested for Graves antibodies which were positive but it wasn`t until I asked for 2nd opinion they ran
some more tests and found I had blocking antibodies as well as stimulating so was started on block and replace
40mg carb for 3wks then 100mg thyroxine.
To cut a long story short liver function tests went up into 1000`s eosinophils went up, I was vomiting within
5 mins of taking the carb everytime (they said this was fine and would go away) and I went hyper.
I told them I was hyper (crazy hyper lol) they said I was overanxious,I had stopped the thyroxine (again against
their advice)but ended up with thyroid storm, FT4 was elevated but FT3 was through the roof.
Started PTU same scenario with vomiting still on them at the moment but take an sickness pill 30mins before PTU.
Its now been decided thyroidectomy the way to go and though I`m scared I think its the best way for me to go now.
They can`t control it with atd`s and to be honest I hate the things now. I should get a date for it in next 6 wks
and they`ve upped my propanol to 4x 80mg a day to try get levels evened out before op.
I`ve also got pre tibial myexedema.
On reflection I think I was hyper for years on and off, any stress I had weight would drop off me, I was always on the go etc etc.
Sorry bout the long post but I`m glad I found you all. :rolleyes:




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#2 Christine

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Posted 02 February 2010 - 09:59 PM

Hi CG!

 

Welcome to the group. It sounds like you've been badly mismanaged in your treatment. This happens all too often, so the antithyroid drugs never really had a chance to work properly. Do you have copies of your labs from the past few months? If not, then request copies as soon as you can.

 

Please list your results, with lab ranges, and the drugs and dosages you were taking at the time of each testing. Maybe we can figure out what they were trying to do and why it wasn't working.

 

Best Wishes,

 

Chris



#3 Celticghirl

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Posted 03 February 2010 - 08:02 AM

Hi CG!

 

Welcome to the group. It sounds like you've been badly mismanaged in your treatment. This happens all too often, so the antithyroid drugs never really had a chance to work properly. Do you have copies of your labs from the past few months? If not, then request copies as soon as you can.

 

Please list your results, with lab ranges, and the drugs and dosages you were taking at the time of each testing. Maybe we can figure out what they were trying to do and why it wasn't working.

 

Best Wishes,

 

Chris



#4 Celticghirl

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Posted 03 February 2010 - 08:38 AM

Hi and Thanks for welcome.

 

I`ve got most of my labs now in a safe place, pity I can`t remember where lol!
These are the ones I could find (most recent and stuffed in handbag)

 

3/12/09

 

TSH 0.001
FT4 29 (9-21)
FT3 14.9 (2.6-6.2)
eosinophil count 1.80 (0-0.5x10)
The other ones out of range on this one are
Alk Phos 142 (40-125) this is ok as was in 1000`s b4.
Creatine 52 (60-120
eGFR >60 60-150) right at borderline.

 

In the comments box at the bottom of this it says
"Indicitive of T3 Toxicosis, eosinophils increased 3/12/09 eosinophils increased 11/7/09
with degenerative cell changes" when I phoned for this result I was told gp had looked at it
and it was satisfactory but I`ve learned the hard way to ask where T4 ETC are.
I was on PTU here 150mg x2 daily.

 

15/1/10

 

TSH 0.001
FT4 25
TT3 10.6 (0.9-2.4) NO ft3 surprise surprise.
On 200mg PTU X3 daily and 80mg propranol x4 daily (still am)I`m seeing doc today and endo
tomorrow.
That`ll prob end up in another bout of hysteria with them asking why I`m so difficult and
me screaming/crying telling them I just want to be bloody me again.
They think I`m nuts......God I`m blubbing again lol.
I`ll try find other labs. This is a terrible disease isn`t it.
Antibodies I have are TPO, TRAB, TRAB11? is that the same as TSI, Think thats them all. :unsure:



#5 mmztcass

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Posted 03 February 2010 - 09:44 AM

You should find another doctor(s) to manage you better than this. You want to get the Free Ts at mid ranges and slowly reduce the PTU and the beta blocker until you find the right amount to keep your Free Ts at mid ranges, at least. If you take too much, you go hypO. Take too little, you go hypER and into a thyroid storm.

 

{{{hugs}}}



#6 Celticghirl

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Posted 03 February 2010 - 10:21 AM

You should find another doctor(s) to manage you better than this. You want to get the Free Ts at mid ranges and slowly reduce the PTU and the beta blocker until you find the right amount to keep your Free Ts at mid ranges, at least. If you take too much, you go hypO. Take too little, you go hypER and into a thyroid storm.

 

{{{hugs}}}



#7 Celticghirl

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Posted 03 February 2010 - 10:30 AM

Hi Linda,
Thanks unfortunately been there and wore the T shirt lol. Its been a rollercoaster
of Hypo/Hyper, they keep telling me how unstable I am, don`t know if thats levels or
me tbh.
I`m waiting for date for TT I can`t take it anymore, should be in about 6wks if they
get me stable.
I had a scan a few days ago (surgeon requested it) and though thyroids imflammed its
also shrunk..if that makes any sense??
Thyroid storm was the worst experience of my life and it scared the sh** out of my
whole family.
Are you on ATD`S

 

Best :)



#8 Christine

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Posted 03 February 2010 - 11:28 AM

Well, of course you can't take it anymore. This is one of the worst cases of doctor incompetency I've seen yet!

I've tried to decipher what your "doctors" have been doing with you, and this is the best I can come up with. It's pretty evident you have doctors who have NO IDEA what they're doing. As Linda stated, you need to find another doctor --- run, don't walk from these clowns who are messing you up!!! If you could get proper monitoring, and proper dosing of the carbimazole, you might stand a chance of stabilizing and even going into remission. Then you'll still have your thyroid. Sounds like your current doctors just want to remove your thyroid so they won't have to mess with you anymore since they don't have a clue what they're doing. But then you will have to deal with these same morons trying to get proper replacement hormone. Out of the frying pan, into the fire.

 

NOTE: If the PTU makes you vomit (and you were/are on a high dose), which it does for a lot of people, then switch back to the methimazole (carbimazole, Tapazole, neo-mercazole, etc.). Many of us do not tolerate one but do great on the other - they are 2 different meds even though they do pretty much the same thing. So why did you stop the carbimazole? If it made you sick, it could be because you were on 40 mg a day which in most cases is an overdose, especially when you don't get enough monitoring.

 


Here's the best I can figure out from your posts. Please make any changes if I've missed something.

 

** Sept 2008 - Told "mild T3 toxicosis" but no meds given

 

 

NOTE: high eosinophils are an indication of some kind of allergy causing inflammation. Mine are always high. More than likely related to thyroiditis or inflammation of the thyroid gland. Anti-TPO is also an indication of damage due to inflammation. You need TSH receptor antibody testing - TSI (Thyroid Stimulating Immunoglobulin).

 

 

** Jan 2009 - Started on carbimazole - what dose?

 


** July 09 - FT4 - 7 (range 9-21) - you stopped the carb. You stopped it instead of lowering the dose? Why?

 


** Dec 2009 - FT4 29 (range 9-21), FT3 14.9 (2.6-6.2) - you are prescribed 300 mg/da of PTU? - why the change from the carbimazole?

 

 

** Jan 2010 - FT4 - 25 (9-21) TT3 - 10.6 (0.9 - 2.4)

 

So the 300 mg a day of PTU was working to drop your levels --- going from Dec 09 to Jan 10 wasn't enough time to lower it very much, but it WAS working!

 

But in Jan 2010, they increase your PTU to 600 mg a day! (DOUBLED IT?) Why couldn't they just give the 300 mg a day more time? And at that, 300 mg/da is a HIGH dose.

 

Note: Carbimazole runs about 1 to 10 ratio to PTU -- example: 30 mg carb equals 300 mg PTU (approximately)

 

And they add 80 mg propranolol, 4 times a day? WHY? Are you actually taking 240 mg a day of propranolol? A usual dose is about 30 to 60 mg a day.

 

In your first post you say (and I'm guessing this is sometime at the beginning of 2009, but I can't tell for sure........):

 

" She also tested for Graves antibodies which were positive but it wasn`t until I asked for 2nd opinion they ran some more tests and found I had blocking antibodies as well as stimulating so was started on block and replace 40mg carb for 3wks then 100mg thyroxine."

 

Does this mean you were given 40 mg a day of carbimazole for 3 weeks, then dropped that to take 100 mg a day of thyroxine, and they called this "block and replace"?

 

>>>>EDIT TO ADD: And did they give you these medications based on the results of the antibody testing (yes, you got the TSH receptor antibody testing, TSI and TBII), or did they actually run your thyroid levels (FT4 and FT3)? If they prescribed this medication based on just the antibody testing, that is REALLY medical negligence!

 

Do they ever run TSH, at least for a reference to make sure it isn't too high (which is hypO)?

 

>>>EDIT AGAIN: OK, I see the low TSH. That's probably why they are giving you such high doses of PTU and then doubling the PTU. Dosing on the TSH is foolish because when hypER, low TSH comes from the TSH receptor antibodies interferring with it.

 

Also, you say they've upped your propranolol to 4X80 mg per day to lower your levels before the operation? Propranolol will help with the heart symptoms and help suppress T3, but it should not be used to lower overall thyroid levels. Also, you better keep an eye on your blood pressure taking that much propranolol. It can lower IT more than you want.

 

++++++++
Find another doctor somehow - one who knows something about Graves'. Even if you get the TT, you still need to find better medical management for proper testing and dosing or you'll still feel terrible.

 

 

 



#9 Celticghirl

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Posted 04 February 2010 - 08:32 AM

Hi Christine,

 

Thanks for looking at my results, I`ve only skimmed the surface on whats been happening unfortunately. I have now been
through 6 GP`s though all at same practice as I live in the catchment area for this one. The one I`m seeing now I have
to say is better than the rest I have seen and although he openly admitted he dos`ent know a lot about thyroid issues
he is willing to listen. ( he`s new and was horrified at some of my results)
I saw him yesterday with no arguments/screaming lol, he told me that as well as imflammation ther was hot nodules showed
up on my scan, I`m not up to speed on nodules, first its been mentioned but I`ll ask endo this afternoon.

 

Right here we go....my starting dose of Carb was 30mg which I know now was far to high especially as labs had fell into
range.
After pleading/screaming etc it was lowered to 15mg in Mar, FT4 was about 11 here and TSH had also risen,I had gained
lots of weight,pitting edema, loss of eyebrows loads of symptoms the worst of which was chronic constipation, I was
hospitalised for this and diverticulitis 6 times last yr ( bowel surgeon has been the best thing in all this mess, he
has been on my side since first day I saw him but I`ll write all this down another time).
From the word go on Carb I was ill, liver function, eosinophils, vomiting far worse than I get with ptu, actually had
erosions on my gullet with vomiting so much. I realise now I was overdosed on it.
I stopped it in July as through bowel surgeon and eventually managing to get all my lab results I knew I was really hypo
with FT4 at 7 they still weren`t willing to lower dose or give me thyroxine and I was truly suicidal at this point. My
thyroid actually started visibly swelling as well when I was started on the carb.

 

At this point I wrote the letter asking for second opinion and as I said was told there was also blocking antibodies and
started block and replace.
I was told I had to take the carb for 3 wks at 40mg as they were going to take control of my thyroid and thyroxine would
be introduced on wk3 at 100mg.....sorry I didn`t make myself clear on that one, I was taking 40mg carg and 100mg thyroxine
a day. No bloods taken before starting or thoughout my stint on B&R despite the fact I repeatedly told them I was going
hyper. I actually stopped taking the thyroxine again against advice but it was too late I went into thyroid storm.
I was started on ptu after this as they decided the carb hadn`t been getting absorbed because of the vomiting, it had
been 20 times worse than it had been first time around plus I think I was going hyper again before starting B&R and they
never took my vomiting into account.
They gave me high doses of ptu in hospital after storm then lowered dose to 300mg (still vomiting but was getting anti
sickness jabs in hospital which gp and endo said I didn`t need anymore after being released)

 

Same scenario I suppose levels rising fast after release, still vomiting, shaking and very very crazy (I`ll go into this
another time to)
So thats where I am now ptu dosage upped and anti sickness half an hour before I take them. Pulse was 174 here so I surmise
this was why the propanol was upped, I know it was a lot higher when I went into storm though.

 

You do have me thinking about the propanol dosage though, I`m thinking now surgeon wanted to make sure levels were ok for
op but I was already taking propanol, could be wrong but its now top of my list of questions for endo this aft.

 

Thanks again I`ll let you know outcome and hope this post a bit clearer.? :)



#10 Christine

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Posted 04 February 2010 - 12:31 PM

Hi CG - Thanks for getting back to me. I think you meant 100 mCg of the thyroxine, but that is still a high amount for B&R (modified B&R) and was very irresponsible of your doctors to "experiment" on you with this regimen without doing your FT4 and FT3 first, and often.

 

I do have one question for now: did you take the full 30 and then 40 mg carb in one daily dose? If so, that might be part of the reason it made you sick. You are supposed to split up the dose, ideally 10 mg every 8 hours (per the manufacturer's instructions). I think that slamming down a large amount at one time might make anyone sick. Same goes for the PTU - it's supposed to be taken in divided doses.

 

Yes, this post was clearer, thanks. I do understand how difficult it must be to write this all out while your levels are off. Been there!! We all have - Not easy to concentrate when hypER or hypO.

 

The propranolol is great for high pulse, but you need to keep track of your pulse rate often (you know how to count that don't you?) and try to keep your resting rate below 90 if possible. Ideally, 70 to 80 beats per minute is a good average rate. Also get a home blood pressure monitor and keep an eye on that, too. The propranolol will affect your pulse rate and your blood pressure.

 

Also, hot nodules are common with thyroid disorder. I have lots of nodules, but have never had a radioactive scan. My endo wasn't too concerned about them, so I don't worry. Don't let them do any more radioactive scans on you, though. If they want to see the nodules again, a thyroid ultrasound will suffice.

 

I look forward to hearing what you find out -

 

Chris



#11 Celticghirl

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Posted 04 February 2010 - 05:27 PM

Hi again Chris,

 

First a big thanks for telling me about the propanol, you were right, far too high a dose. Endo assumes same as me that gp looked at surgeons
letter and never took into account the fact I was already on beta blockers.
Now lowered to 2x 80mg daily but if I feel I need another one thats fine but 4 too much. Todays visit was actually quite enlightening, I`ve been
laying blame entirely at her door because as far as other gp`s I`ve seen it wasn`t their fault blah blah they were following her instructions.
Turns out as she was getting no feedback from gps she assumed I was doing ok, she was actually horrified that B&R was started without bloods
and not monitored. BTW I would probably have forgotten about that fact, I only remembered as I was writing about the B&R.
Anyway I was highly suspicious that she was maybe trying to pass the buck ( or paranoid) and said as much. She told me she has a file on her pc
for every patient and every call/email/test results from primary care go in it, mine had about 5 things in it.
She then opened up another patients which was full. She did admit that she got things badly wrong at first, I was her first GD patient and she has
learned a lot from my case, that the letter I had written asking for the 2nd opinion opened her eyes more.
I don`t buy it all but it may help if she ever gets another GD patient. She also gave me her card as could not believe that I was literally begging a
gp to test my thyroid,if anything like that happens again or I need anything call her.
They took more bloods and she will call me with results,she is also going to get something drawn up and sent to primary care regarding communication
as they are the first line support.

 

Regarding the carb no I never took them in one dose, I split them into 2 doses though no one told me to, think I read it on internet. The ptu I take
in 3 doses a day. I take my pulse 2-3 times a day since the storm, it has never went below 100 (resting) since then even on the propanol. My mum
has a blood pressure monitor so I use that.....I`ve had some weird readings with that as well lol.
Endo said same as you regarding the hot nodules, she asked if I still wanted to go ahead with op or wait a bit and think about it but agreed when I
said I thought I`d be better off getting the op done especially with the vomiting and the fact that the rash I got with carb has started with the ptu
now as well (forgot to write that in post to you) she also said something about my antibodies count showing that remission was unlikely?? I should have asked about that, forgot seems to be the most used word in my vocabulary this past yr. Op can`t go ahead till levels are stabilised though, I told her
I def wasn`t as bad ( I`ve not had a physcotic(sp ?) episode for at least a wk lol but she said to take a look when I went back to waiting room at the
people with scarves etc still on and me sweating in a tshirt, that alone told her I was still hyper before I even entered her room.

 

Are you in remission now, have you been diagnosed for long time? I`m still getting the hang of the site and getting round to looking at all the great
stuff but I have a short attention span just now. God its taken me nearly an hr to write this post, sorry its long again.

 

Oh yeah are you in UK? I looked up the B&R protocol here ( think it was patient.co.uk) and what they had me on seems to be the norm here, high
dose atd at first then thyroxine 100 mcg added in. This is in order for them to completely block the thyroid then give it enough thyroxine and then
they are completely controlling the thyroid. Sounds good on paper lol but I guess testing levels before and during this regimen is the biggest part
of it. As you rightly said it was irresponsible God I`m blubbering again and angry at myself for not realising it at the time,.
Hope you are doing ok and thanks again.

 

CG Posted Image



#12 Christine

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Posted 04 February 2010 - 11:10 PM

Hi CG - Sounds like you had a fruitful doctor's visit today. I better understand all the problems you've had with the different meds. I can understand why you are tired of it. If you have decided on the thyroidectomy, then I wish you the best of luck. At least you have explored your options and know that this is the route you want to take.

 

Just for the benefit of others on one point: the level of your antibodies doesn't necessarily mean remission would be impossible. There is no way to tell from that because the antibody levels do change.

 

I'm glad you've found a doctor who sounds like she will work with you. That is of utmost importance no matter which treatment you go with. At least she will be willing to get you the proper testing to determine the proper amount of replacement hormone to give you the best quality of life after the TT.

 

I'm in California, USA. I have never achieved remission and I don't really care, but that doesn't mean I'm giving up trying. I've taken Tapazole for over 30 years and have had great luck with it. I still experiment with diet to see if I've missed something. My signature is below. You will note my levels are different from what most people feel comfy with. My FT4 is very low, but that is the only way I can keep my T3 at the right level. But I'm working on getting those levels closer in ratio. Presently trying to go with an anti-inflammation diet. I think inflammation has a lot to do with my thyroid problems.

 

Please keep in touch and let us know how your journey is going. I'll be watching because I think you are going to finally get some good medical care (now that you've gotten that doctor mess straightened out) and it will be nice to see your life turn around and become better all the time!

 

Best Wishes,
Chris



#13 Celticghirl

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Posted 05 February 2010 - 12:45 AM

Hi CG - Sounds like you had a fruitful doctor's visit today. I better understand all the problems you've had with the different meds. I can understand why you are tired of it. If you have decided on the thyroidectomy, then I wish you the best of luck. At least you have explored your options and know that this is the route you want to take.

 

Just for the benefit of others on one point: the level of your antibodies doesn't necessarily mean remission would be impossible. There is no way to tell from that because the antibody levels do change.

 

I'm glad you've found a doctor who sounds like she will work with you. That is of utmost importance no matter which treatment you go with. At least she will be willing to get you the proper testing to determine the proper amount of replacement hormone to give you the best quality of life after the TT.

 

I'm in California, USA. I have never achieved remission and I don't really care, but that doesn't mean I'm giving up trying. I've taken Tapazole for over 30 years and have had great luck with it. I still experiment with diet to see if I've missed something. My signature is below. You will note my levels are different from what most people feel comfy with. My FT4 is very low, but that is the only way I can keep my T3 at the right level. But I'm working on getting those levels closer in ratio. Presently trying to go with an anti-inflammation diet. I think inflammation has a lot to do with my thyroid problems.

 

Please keep in touch and let us know how your journey is going. I'll be watching because I think you are going to finally get some good medical care (now that you've gotten that doctor mess straightened out) and it will be nice to see your life turn around and become better all the time!

 

Best Wishes,
Chris



#14 Celticghirl

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Posted 05 February 2010 - 01:48 AM

Hi Chris,

 

Could the fact that the antibodies have significantly increased have any effect on achieving remission? I`ve pulled
the house apart tonight/this morning (no sleep yet again) looking for those test results.
What I did find were some letters from endo and on the one she sent me regarding B&R she has written that my
levels of TgAB, TRAb and TPO had all greatly increased.
I also forgot to say that its suspected I also have Hashi`s as well as Graves.

 

I looked at your signature, your FT4 is very low, thts one of the things I can`t get my head around, my FT4 has
only elevated in the last few months before that it was sitting between mid and top range (apart from hypo )
yet T3 always elevates quickly. Does this mean we convert the T4 too fast? GD and thyroid just confuse me full
stop.
Gosh 30yrs on Tapazole ( thats same as carb right?) I was under the impression atd`s could only be taken for 2
yrs, I really wish they had worked for me, endo told me also today thats its rare to have the reaction to both
ptu and carb that I have. I`m quite worried about the thyroidectomy, I don`t particularly want an op but I honestly
don`t know what else to do. I need a colon resection which has had to be put on hold until thyroid stops swinging
between hyper/hypo, thats what my decision was mostly based on, the thought of going through all this again
trying to get things levelled out with replacement meds. Nightmare!!

 

Do you have Ted or Pretibial myexedema or any other symptoms, at the moment I actually have no fingernails
left, I have pretibial myedema and gritty eyes but no TED. I wish I found this site quicker.

 

You mentioned inflammation, have you tried Low dose Naltrexon, reason I ask is I was given a trial of it for my
bowel disease last yr and it actually helped my thyroid symptoms but as it was only for a trial ( don`t think its
approved here) I couldn`t get it again when trial finished.

 

Have you had better luck than me with doctors, God my heart goes out to you 30yrs suffering with Graves is
scary.

 

Thanks again for taking the time to help me.

 

Best

 

CG



#15 Celticghirl

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Posted 05 February 2010 - 06:02 AM

Hi again,

 

I`ve found labs, after turning house upside down I found the safe place lol. I had put them in a spreadsheet on computer,
I`ve been trying to copy to signature but I`m doing something wrong?
I`ll type them in, brain fog evident when I looked at dates etc, I`ve put all wrong dates in posts lol. I did notice however
There is a kinda hyper result from 2006 which I knew nothing about.

 

I`ll go try signature again. Posted Image



#16 cd3764

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Posted 05 February 2010 - 07:59 PM

A belated welcome!

 

I just realized this section of the site existed (the format was changed recently and this ol' dog doesn't learn new tricks too well).

 

Anyhow, Chris is doing her usual great job so I will not interfere.

 

I'd like you to know, though, that it IS possible to go into remission with high antibody levels - please take a peek at my signature
and you will see I am one example.

 

Endo #2 treated me, or shall I say overmedicated me, for the bulk of my Graves' journey - as you might have noted, my TSI is
higher now than at time of Dx!

 

My TSI went over 500 at one point - the time my TSH was over 3.

 

I've been posting on thyroid forums for awhile now and it has become clear to me that all too many docs don't know how to medicate.

 

My advice to any new patient is to make sure their doc knows how to medicate properly before choosing a permanent treatment.

 

It's bad enough when a patient is on ATD's (anti-thyroid drugs) and the doc Rx's too much......at least the patient can take a lower dose.

 

When a person no longer has a thyroid, that person needs thyroid hormone replacement meds. A doc that doesn't know how to medicate
will not Rx enough meds - very hard to get more.

 

I wish you the best of luck moving forward - you found a great place to get information and support here....and it sounds like you finally found
a good doc!



#17 Celticghirl

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Posted 05 February 2010 - 11:18 PM

Hi,

 

Thanks for welcome. First of all Congratulations on remission :-) long may it continue for you and it just shows that it can be done
patience and perseverance plus it gives hope to other people on the board. I`m so glad I found this site, like yourself I`ve been
on other thyroid sites but the most of the ones I was on didn`t know a lot about GD so when I came across this one the other
day I couldn`t believe it.
I don`t know how I`ve missed it before as I`m always trawling about looking for info ( how much of that info actually penetrates
is another matter lol)
Chris has been really welcoming and informative, I`ve been getting through the posts and stuff today and everyone of you do a
great job and its so much better when people know exactly what we`re going through OMG had to go for another blubber, I`ve
been blubbering all day today, just soooo tired think `i`,m on day3 of no sleep, well actually had 15mins at one point pulse at
148 just now. Endo actually called me earlier (wow) and said she wants see me again regarding my adrenal glands, I asked her
about the antibodies and I actually picked her up wrong ( not like me lol) what she said was she agreed with me as (just went
and woke my daughter as I forgot again, not popular) both hashis and graves abs attacking me, bloody war more like.
I think I`m going more hyper today trying to stay calm here as sometimes I make myself worse when your heart races does
your throat ?? flutter only way i can describe it. ok have took another propanol and a diazapam.
You know every forum I`ve looked at everyone tells the same story, overmedicated,undermedicated crappy arrogant docs
telling us we`re fine when we`re so blatantly not. Sorry rant over.
I wish the atd`s had worked for me, I mean they work but the side effects I can`t handle, I always thought I`d never go for
the surgery or rai but I`d actually cut it out mysef at this moment, I`m having to put an anti sickness pill between my gum and top lip 3x daily just so I can take the ptu
Has copper anythng to with GD, endo also said on phone my copper was high and normally depleted in GD or is that
adrenal maybe she was talking about...who knows....there was asomething low in range as well God I wish my brain
would function. Do you take thyroxine or just atd`s or do you go off all meds when your in remission (thats a lovely
word isn`t it) I`m rabbiting on here sorry. Thanks again I`m going to try get lie down again my heart booming in my ears. God I just want to be me again :-(
Stories like yours show there is light at the end of tunnel jsut a bloody big long tunnel lol

 

Posted Image



#18 mmztcass

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Posted 06 February 2010 - 01:56 PM

Hi,

 

Thanks for welcome. First of all Congratulations on remission :-) long may it continue for you and it just shows that it can be done
patience and perseverance plus it gives hope to other people on the board. I`m so glad I found this site, like yourself I`ve been
on other thyroid sites but the most of the ones I was on didn`t know a lot about GD so when I came across this one the other
day I couldn`t believe it.
I don`t know how I`ve missed it before as I`m always trawling about looking for info ( how much of that info actually penetrates
is another matter lol)
Chris has been really welcoming and informative, I`ve been getting through the posts and stuff today and everyone of you do a
great job and its so much better when people know exactly what we`re going through OMG had to go for another blubber, I`ve
been blubbering all day today, just soooo tired think `i`,m on day3 of no sleep, well actually had 15mins at one point pulse at
148 just now. Endo actually called me earlier (wow) and said she wants see me again regarding my adrenal glands, I asked her
about the antibodies and I actually picked her up wrong ( not like me lol) what she said was she agreed with me as (just went
and woke my daughter as I forgot again, not popular) both hashis and graves abs attacking me, bloody war more like.
I think I`m going more hyper today trying to stay calm here as sometimes I make myself worse when your heart races does
your throat ?? flutter only way i can describe it. ok have took another propanol and a diazapam.
You know every forum I`ve looked at everyone tells the same story, overmedicated,undermedicated crappy arrogant docs
telling us we`re fine when we`re so blatantly not. Sorry rant over.
I wish the atd`s had worked for me, I mean they work but the side effects I can`t handle, I always thought I`d never go for
the surgery or rai but I`d actually cut it out mysef at this moment, I`m having to put an anti sickness pill between my gum and top lip 3x daily just so I can take the ptu
Has copper anythng to with GD, endo also said on phone my copper was high and normally depleted in GD or is that
adrenal maybe she was talking about...who knows....there was asomething low in range as well God I wish my brain
would function. Do you take thyroxine or just atd`s or do you go off all meds when your in remission (thats a lovely
word isn`t it) I`m rabbiting on here sorry. Thanks again I`m going to try get lie down again my heart booming in my ears. God I just want to be me again :-(
Stories like yours show there is light at the end of tunnel jsut a bloody big long tunnel lol

 

Posted Image

 

Hi CG:

 

Your signature turned out great. Would it be possible to add the amounts of PTU and Prapranolol to each of those dates so we know where you were at currently?

 

Also have you considered getting a small notebook to record everything you nave eaten such as preservatives, foods/drinks, chemicals, etc. that's been a part of your diet? If anything makes your heart rate shoot up or stays up high, it is most likely diet related.

 

Do you take a multivitamin without Iodine, at least?

 

Do you know how high your Copper level is to your Zinc? For me I had high Copper to low Zinc levels. This kept my Free T3 up consistently.

 

Do check here at the board Thyroid 101 and read the common triggers that sets off and gets our Free T3 up.

 

{{{hugs}}} :-)



#19 Monica

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Posted 06 February 2010 - 04:08 PM

Most people with GD are low in Copper and some NDs recommend supplementing with Copper as part of their treatment protocal. It is very important to have your copper levels checked first because both you and Linda are actually already high in copper. Some people can bring down their copper levels by supplementing with Zinc which is antagonistic to copper. Check with your doctor or ND about this.

 

People who are in remission will not be on any medication. Some people eventually become hypothyroid either through a permanent treatment option (surgery or RAI), inflammation and damage to their thyroid or from hypO causing autoantibodies and they would need to take thyroxine. People who are hypER would take ATDs or a combination of ATDs and thyroxine called block and replace.



#20 Celticghirl

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Posted 07 February 2010 - 02:16 PM

Hi again,

 

I don`t know how high my copper result was yet, endo told me on phone but I will ask about it and also zinc when I see her. I`ll keep
this short as really not doing good at the moment.
Yeah Linda I take multivitamin without iodine, as far as diet..............I have always had a reasonably healthy diet.........no preservatives
I`ve had Crohns disease since I was a child so have to be very careful what I eat, learned the hard way about food triggering it.
Also (people think I`m weird with this one..........I don`t like fizzy drinks cola etc) just drink water- I did drink a load of coffee before
but cut that out months ago.
I am under a good bit of stress lately which unfortunately is a ongoing problem so its more this than a food problem with me. I also take
Magnesium and vitaminb compound.
Thanks for the input Monica its much appreciated. I will update signature next time but at the moment I`m on 600mg PTU daily and 2 - 3
x 80mg propanol and it just ain`t working at all!!







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