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It's Back After 2 Years In Remission


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#1 amd

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Posted 12 February 2011 - 08:19 PM

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Hi all,
I am new to this website and I have a lot of reading to do here. I wish I had found you guys my first time round with Graves.
I first had Graves around 3 and a half years ago, spent 18mths on neomercazole before becoming euro.
The neomercazole side effects were not good. The whole time I was on it I felt sick, had a fuzzy head I felt like I was living in a cloud, permanant sinus and hives. Along with the neomercazole I took panadol sinus and telfast to counteract the side effects.
the first time I got it, I was dealing with an extremely stressful situation at the same time I picked up a virus with the worse migrain I have ever had and vomiting that only lasted just on 2 days. After the 2 days of being sick I continued to feel unwell for weeks. I eventually went to the Dr. after working on the farm and noticing I was increasingly out of breath, hot when everyone one else was rugged up and cold, I was having trouble walking, my muscles just didn't want to work, my heart continually raced, I went to throw my leg over and electric fence and landed on it,oooocch, I could not keep my legs still at night when trying to sleep, the skin on my shins felt thick, pain in my shoulder joints, really hungry, eating heaps and still losing weight, I couldn't walk up the stairs at work, could not stop shaking, became paranoid, had to write everything down or I forgot what I was supposed to be doing at work...... I was in pretty bad shape by the time I got to the Dr. and then to top it off the pathology lost my results so another delay in diagnoses!!
We got it all sorted and almost 2 years to the day I stopped the medication first time round I was diagnosed again.
I first suspected something was happening back in August 2010 a month before one of my kids was having pretty major surgery. (stressful situation once again) I explained what I was feeling to my Dr (lump in my throat) and she sent me to and ENT specialist who looked down my throat and said everything was fine. Well in hindsight I should have requested a blood test or more to the point she should have given me one. I went to a different Dr. last week as I noticed I was a bit shakey and my thyroid felt enlarged. I got the blood test results 2 days later hmmmmmmmmm! Graves. She was not impressed that I had not had a blood test for 12mths she said I should have been having one every 6mths at least and if a blood test had been done in october graves would have been picked up then.
Off memory and what I could understand the blood tests consisted of the following. full blood count, liver function, kidney function, sugar, colestorol, tsh, t3, t4 there was other things on the form that I didn't know what they were. she did say one of the test showed my thyroid was "breaking down" I don't know what this means or what the effect will be at this stage.
I am having an ultra sound on my throat and thyroid tomorrow. She is working in consulation with an endocronlogist and has sent my results on to her for evaluation.
My Dr. did mention the possibility of radiation, I am terrifed of this, I do not want to have radiation if I can avoid it. if something major needs to be done i'd rather they cut it out. I need to learn more and I'm sure i will find the answers/options on this site.
Oh the Dr. has put me on to PTU.


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#2 cd3764

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Posted 15 February 2011 - 05:07 PM

Welcome!

Sorry for the reason you're here but glad you found us.

Sounds like you might have been over-medicated the first go-round.....truly, if you were medicated properly, you
would have been feeling better within 6-8 wks. after starting meds....and stayed feeling good until you entered
remission.

Please read the Thyroid 101 section here to learn as much as you can about Graves' - it is a very manageable
disease and, while it is possible to come out of remission, you can go back into remission once again.

If you make dietary and lifestyle changes (as with any disease), there's a chance you can make your remission
longer-lasting.

Here's what I consider a good read for those confused about treatment options:

http://elaine-moore....69/Default.aspx

You just might want to read around on the rest of Elaine Moore's site since it is chock-full of great information - one
of the best sources on the net for info about Graves' disease.

If you want to feel well while having Graves' disease, you will benefit from keeping track of your labs/meds doses
and symptoms......this applies no matter what treatment you choose.

This will help you "hone in" on YOUR best "place" within the ranges of normal thyroid hormone levels....too many
doctors are all-too-comfortable with levels in the normal range.....and, more likely than not, they are not YOUR
normal.....you will have to do this work for yourself if you want to optimize your health.

We'll gladly help you interpret your lab results if you post them here - please be sure to include the ranges since
they vary from lab to lab and by geographical area.

Also please let us know what dose of PTU you are taking. Hopefully, you are dividing your dose into 3/day.
(PTU has a short half-life and dividing your dose this way helps to keep your thyroid hormone levels steady...steady
thyroid hormone levels feel much better....and bode better for healing)

Good luck - we'll be here for you!

#3 amd

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Posted 16 February 2011 - 05:42 AM

Thank you for replying to my post and providing some interesting information. I had no idea the way I was feeling the first time round with graves wasn't normal. I thought it was normal to feel that way on the medication and probably more to the point my alergy to the tablet was causing problems.
I had good news yesterday the ultra sound on my thyroid and throat came back clear nothing sinister could be seen, the thyroid looked rough he said that was normal for graves and my thyroid is within normal size range. That was a suprise as I can feel my thyroid is larger than normal.

I started on the PTU last Wednesday on 2 tablets twice a day for 6 days and then went to 3 tablets 2 twice a day as of yesterday. the PTU are 50mg

The first 4 days of the PTU made me feel really sick and tired thereafter I came good. I felt a little sick yesterday after taking the additional tablet I'm feeling okay now.

I'm not sure what "PTU has a short half-life" means. Does this mean you can only take this medication for a short period of time?
I hope there is another alternative to neomercazole

the Dr. did show me my blood test results. I was so freaked that my fears were confirmed and more to the point the thought of having to take neomercazole I can't remember what they were.
I have a blood test friday week and visit to the Dr. on the following monday. I'll ask for a copy of the last 2 blood test results.

I had a quick look at the thyroid 101 section I'll have to go back and look as not too much is staying in my head at the moment

It's comforting to know you guys are out there and understand what you are going through
Thankyou

#4 cd3764

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Posted 16 February 2011 - 07:09 AM

Great news about the ultrasound!
Half-life refers to the amount of time it takes for half of the medication to be used up within the body.

ATD's (anti-thyroid drugs) are some of the safest meds out there......if people have difficulties with these meds,
it's usually dose-related....in other words, the dose is too high. True allergies to ATD's is very rare.

I'm not sure why your PTU dose was increased after 6 days - maybe the doctor wanted to see how well you tolerated it?

In light of the PTU half-life that I mentioned, you would fare better if you could take 2 tabs 3 times/day...roughly 8 hours apart.

Please be sure to post your labs - this way, we can see if you are on the right track.

#5 amd

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Posted 28 February 2011 - 02:00 AM

Hi all
Almost 3 weeks into taking PTU and I feel great. I was so stressed about taking this medication all for no reason:-)

Okay I went to the dr today and my results are good. The down side was this endo she is consulting with plans to give me RAI. NOT HAPPY! My exact words to my Dr. were. "I will be jacking up at that and she would want to have a really good reason to suggest it" My dr was a little taken back to say the least.
Anyway below is my 2 blood test results that I have had so far

8 Feb 2011
Free T4 33.5
Free T3 24.2
TSH 0.01


25 Feb 2011
Free T4 17.7
Free T3 6.9
TSH 0.01

#6 cd3764

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Posted 28 February 2011 - 08:26 AM

Very happy to hear that you are feeling great!

Now, these labs that you had most recently - were they done after you'd been taking
a total of 150mg PTU?

Also, we really need to see the ranges with those labs since they vary from lab to lab
and by geographical area...it's important to see "where" your levels "fit" within the
ranges of normal.

I suspect the ranges for your FreeT4 might be something like 9 or 10 up to 20 or 23.

Dosing is based upon our FreeT4 levels so you will note that 3 wks. of meds did a great
job.

If you continue at the same dose, you will be driven hypo.

I sure hope your doctor reduced your dose substantially 'cuz, now that your levels are
in-range (and in a "good place"), it's time to start taking what is called a maintenance
dose.

The most common PTU maintenance doses are 25mg-100mg total/day. As you move
forward from here, you need to take the lowest possible dose to keep your FT4 at mid-range,
at least.

That will keep you feeling as great as you're feeling now....and keep your thyroid hormone
levels where they should be to promote healing.

I think I've given you enough information for you to figure out that RAI is not the optimal
treatment choice for Graves'. If you really want a permanent treatment, surgery is better.

Remember, you are the consumer - the doctor is providing a service. You have a right to
choose your treatment.

#7 amd

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Posted 28 February 2011 - 04:49 PM

I'm taking 150 in the morning and 150 in the evening. Dr wants to leave me on that dose for the next 3 weeks. In saying that may results came through late and she wouldn't of had time to consult with the endo. my dr is now away for the next 2 weeks.

I will stick to the ATD's, when and if the time comes when I need either rai or surgery I will deal with it then. I figure if I don't have cancer or anything suspect on my thryiod I don't need rai. I think surgery would be an option if my thyroid can't be controlled on ATD


8 Feb 2011
Free T4 33.5 pmol/L (9.0-19.0)
Free T3 24.2 pmol/L (2.6-6.0)
TSH 0.01 mU/L (0.3-5.0)

25 Feb 2011
Free T4 17.7 pmol/L (9.0-19.0)
Free T3 6.9 pmol/L (2.6-6.0)
TSH 0.01 mU/L (0.3-5.0)

#8 cd3764

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Posted 28 February 2011 - 05:24 PM

Thanks for posting the ranges for your labs.

As you will note, your FreeT4 level is nicely in-range....most people feel/function best with
FT4 levels towards the high end of the range so yours would be considered perfect (as
long as you're not having symptoms)

Dosing is always based upon our FreeT4 levels since FreeT3 levels take longer to move
and we have 8 times the amount of FreeT4 vs. FreeT3.

Continuing with your current dose will drive your levels down much, much further.

When are you due for your next set of labs?

You obviously had a great response to ATD's - I'd hate for you to go hypo (which is what
I think happened to you last time you took ATD's)

Glad to hear you're choosing to stay on ATD's - certainly no rush for you to do anything
permanent right now.

#9 amd

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Posted 01 March 2011 - 06:05 AM

Thanks cdsh3764
No I didn't go hypo last time but it took an awful lot longer for everything to start settling down. I am absolutely amazed at how quick my levels have gone down this time and how much better I am on this medication although you have mentioned I was possibly over-medicated on the neomercazole and I think you're right.

I have taken 2 instead of 3 tablets tonight and I'll continue to do the same for morning and evening until my next blood test in 3 weeks time.

I will also post on here to see if anyone on this forum is near where I live and can recommend and endo that doesn't think rai or surgery is the only solution to graves.

#10 cd3764

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Posted 01 March 2011 - 07:22 AM

Anytime :)

From what I have read, after a relapse, it's not uncommon to have things go a bit easier the next time one takes ATD's.

Just so you know, on this board, when we say going hypo on ATD's, we are also referring to being overmedicated on ATD's.

You see, when we are overmedicated on ATD's, our thyroid hormone levels have been pushed down too low for our body's needs.
Yes, our labs might still be in the normal range but, the levels are too low for us.

When our levels are too low for us, this causes an increase in antibody production. Well, antibody production is what got us
sick in the first place.

I have a couple of suggestions for you in your doctor search....

Check this site:

http://www.thyroid-info.com/topdrs/

And/or call your pharmacist for contact info for doctors that Rx Armour and/or Cytomel. Now, these meds are thyroid hormone
replacement meds that one would take when dealing with hypothyroidism as a result of RAI/surgery or Hashimoto's disease.
But, not all doctors recognize the benefits of these meds......"with-it" doctors often do and seem to be more inclined to look
at the most-important FreeT4 and FreeT3 levels rather than TSH.

Please be sure to post your next set of labs when you get them.....200mg/day PTU is still a pretty high dose.

If at all possible, it would be best for you to divide your dose into 3/day due to PTU's half-life......stable thyroid hormone
levels bode best for healing and sense of well-being.

Best of luck to y ou - we're rooting for you!

#11 amd

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Posted 21 March 2011 - 04:40 AM

Good blood test results today.


25 March
Free T4 11.9 pmol/L (9.0-19.0)
Free T3 5.0 pmol/L (2.6-6.0)
TSH 0.01 mU/L (0.3-5.0)

I took 2 tablets twice a day for 4 days until I noticed I was starting to shake again so I went back up to 3 twice a day.
I've had a couple of days where I have been very tired and yesterday "WOW" was I grumpy, I'm okay today and I wondering if it was just a bad case of PMT's in the lead up to monthlies
Dr. has kept me on 3 tablets twice a day until the next blood test in 3 weeks. I questioned this and mentioned my concern of becoming underactive she has assured me I won't but told me to watch for symptoms just in case!!!

#12 cd3764

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Posted 21 March 2011 - 07:50 AM

Nice to hear from you!

Dosing is ALWAYS based upon our FreeT4 level.....and, the goal is to take the lowest possible dose
to keep the FreeT4 level at mid-range, if not higher.

Mid-range for your lab is 14 so you can see that your FreeT4 level is lower than that....you are already
heading underactive and your body is trying to compensate for this by producing more FreeT3.

Also, please know that we can have transient hyper symptoms after a dose decrease.

All of this said, you were probably better off staying on 2 tablets twice/day (I'm thinking this means
a total of 100mg PTU?)...

You might want to call your doctor....staying on 3 tablets twice/day will definitely make you hypo.

#13 amd

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Posted 21 March 2011 - 10:33 PM

Stupid me I should have posted back here sooner. My Dr hadn't spoken to the endo before my appointment this time which is a concern and also I don't trust the endo. I feel I'm winging it at the moment which is really dangerous with my levels getting down. I am actively trying to find another Dr that knows about graves disease that is local. the link you posted in an early post lists endo's/Drs roughly an hour and a half to two hours away ideally i would like to find one closer, one can only hope.
Okay I took 2 this morning and I'll continue to take 2 twice a day and if I start feeling odd I will post back here:-)

Thank you for taking the time to reply to me, you are a wonderful knowledgable support

#14 swelligant

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Posted 22 March 2011 - 09:44 PM

Hi all,
I am new to this website and I have a lot of reading to do here. I wish I had found you guys my first time round with Graves.
I first had Graves around 3 and a half years ago, spent 18mths on neomercazole before becoming euro.
The neomercazole side effects were not good. The whole time I was on it I felt sick, had a fuzzy head I felt like I was living in a cloud, permanant sinus and hives. Along with the neomercazole I took panadol sinus and telfast to counteract the side effects.
the first time I got it, I was dealing with an extremely stressful situation at the same time I picked up a virus with the worse migrain I have ever had and vomiting that only lasted just on 2 days. After the 2 days of being sick I continued to feel unwell for weeks. I eventually went to the Dr. after working on the farm and noticing I was increasingly out of breath, hot when everyone one else was rugged up and cold, I was having trouble walking, my muscles just didn't want to work, my heart continually raced, I went to throw my leg over and electric fence and landed on it,oooocch, I could not keep my legs still at night when trying to sleep, the skin on my shins felt thick, pain in my shoulder joints, really hungry, eating heaps and still losing weight, I couldn't walk up the stairs at work, could not stop shaking, became paranoid, had to write everything down or I forgot what I was supposed to be doing at work...... I was in pretty bad shape by the time I got to the Dr. and then to top it off the pathology lost my results so another delay in diagnoses!!
We got it all sorted and almost 2 years to the day I stopped the medication first time round I was diagnosed again.
I first suspected something was happening back in October 2010 a month before one of my kids was having pretty major surgery. (stressful situation once again) I explained what I was feeling to my Dr (lump in my throat) and she sent me to and ENT specialist who looked down my throat and said everything was fine. Well in hindsight I should have requested a blood test or more to the point she should have given me one. I went to a different Dr. last week as I noticed I was a bit shakey and my thyroid felt enlarged. I got the blood test results 2 days later hmmmmmmmmm! Graves. She was not impressed that I had not had a blood test for 12mths she said I should have been having one every 6mths at least and if a blood test had been done in october graves would have been picked up then.
Off memory and what I could understand the blood tests consisted of the following. full blood count, liver function, kidney function, sugar, colestorol, tsh, t3, t4 there was other things on the form that I didn't know what they were. she did say one of the test showed my thyroid was "breaking down" I don't know what this means or what the effect will be at this stage.
I am having an ultra sound on my throat and thyroid tomorrow. She is working in consulation with an endocronlogist and has sent my results on to her for evaluation.
My Dr. did mention the possibility of radiation, I am terrifed of this, I do not want to have radiation if I can avoid it. if something major needs to be done i'd rather they cut it out. I need to learn more and I'm sure i will find the answers/options on this site.
Oh the Dr. has put me on to PTU.



#15 swelligant

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Posted 22 March 2011 - 09:47 PM

yeah. its a bugger when it comes back, mine came back in 3 mths.....hopefully theyll put you back on neo-merc....
but unfortunately there could be a time when you have to decide to get it cut out or take a dose if radio active iodine, thats where im at now. all the best for you......nothing worse then the tremors and racing heart is there.....justine, 39, australia

#16 amd

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Posted 23 March 2011 - 03:07 AM

Had a good day today. I got 2 leads for Drs where I live, from 2 different people at my work that have Graves disease. one Dr has closed his books but his receptionist said she would talk to him and hopefully get back to me tomorrow and the other I will phone tomorrow :-)

Hey swelligant nice to her from you. Yes you're right it is a bugger when it comes back, but I intend to ride it out for as long as I can and as many times as I can. If I get cancer in the thyroid then I'll have no choice. At the moment I have choice and I'm going to stick to my guns. I guess it's a personal thing, each to their own.

Good luck with your choice of treatment


2 Dr appointments next week, hopefully one of them will be the right one for me. I'm feeling a little excited about the prospect:-)

#17 amd

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Posted 01 April 2011 - 03:14 AM

Not such a good day today.
Had an appointment with a possible DR. or I should say a NOT possible DR.
She said she knew about treating Graves and was very short with me because I asked if she was familar with dealing with Graves.
She didn't understand why I had got Graves back, "normally you get it once and either go back to normally or go underactive, not get it again" hmmmmmmmm alarm bells are ringing.
Get this, she then looked up wikipedia for information. If there is one thing I know it's you don't believe everything you read on wikipedia and as for DR referring to it "OMG"
I wanted to get up and walk out, I should have.
She continued on questioning me about possible causes for it coming back and she was still confused.........by the time she has finished questioning me and being almost nasty, I was very upset. This is the first time since getting Graves this time that I have become emotionally upset. She then told me I have issues with dealing with stress and I need to address it to move on. fill in this form............ She didn't like me that was very clear

WELL HELLO I HAVE GRAVES DISEASE IT'S NORMAL TO BE EMOTIONAL AMONGST OTHER THINGS "WTF"

I will not be going back to her.

She said the PTU is holding my free T3 & T4 where it is!!!!!!!!!! If that is the case why has it continually gone down. she said it won't make me go underactive!!!!!

I will put this down to experience and move on. I am still waiting to see if the other Dr will see me

Okay I've had my whinge and I feel better now:-)

#18 cd3764

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Posted 01 April 2011 - 06:41 AM

Sorry to hear about yet another clueless doctor.

Your appointment reminds me of the hour I spent with endo #3....comments here and there
had me very concerned and I wasn't optimistic.

I was at the point, though, of "using" doctors....I felt confident of the knowledge I had acquired thus
far and had scheduled appointments each month with a new doctor.

My plan was to meet with a new doctor, get labs, see if I agreed with the dosing recommendation.
If I didn't agree with the dosing recommendation, I planned on managing my own dosing until I
met with the next doctor.

This works when you're taking anti-thyroid drugs.

It wouldn't work if a person is where I'm at now - needing replacement.

This is why I suggest to people considering a permanent treatment to make sure, without a doubt,
that the doctor knows how to medicate properly.

Easy enough to take a lower dose of ATD's if the doctor prescribes too much.

Very, very difficult (if not impossible) to get a higher dose of replacement if the doctor doesn't
Rx enough.

Hang in - you will find the right doctor as long as you keep trying.

#19 amd

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Posted 19 April 2011 - 03:44 AM

Good news in the last week. I have managed to get an appointment with a Dr that has been treating a lady with Graves disease on ATD's for the past 6 years and managing her well. I had an appointment with my normal dr that knows nothing about graves on monday and of course she was telling me I'll either have to have RAI or surgery because of the risk of Bone marrow compression......... I thought she was going to tell me off when I told her I had self medicated and reduced my dose of PTU but she was fine about it. I guess shecouldn't say anything because my results were good. On a happier note I told her I wanted to see an endo in Brisbane that I had heard good things about and she agreed it would be a good idea to see him.

Latest results are below and of course she has said no change in dosage. currently taking 2x 50mg PTU in the morning and the same for the evening so 4x 50mg in total a day

I think the levels below are good for me I am feeling quite sane and back to normal:-)

Thursday 14 April 2011 (4th blood test)
Free T4 9.6 pmol/L (9.0-19.0)
Free T3 4.8 pmol/L (2.6-6.0)
TSH 2.0 mU/L (0.3-5.0)

The Dr pointed out my antibody results which are a bit freaky to say the least. they are below

Peroxidase Ab 818 IU/mL (<6)
Thyroglobulin Ab 143 IU/mL (<4)

#20 mmztcass

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Posted 19 April 2011 - 08:07 AM

Hi:

Your doctor should order the TSI and TRAb antibodies tests because of your Graves' Disease. The other ones (although no such good tests) checks to see if you have Hashimoto's Thyroiditis. Many of us do have antibodies for both Hashi's and GD.

If this were my FT4, it would be too low for my needs.

Glad to read you're feeling much better.

{{{hugs}}} :)





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