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#1 clarabucket

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Posted 15 August 2010 - 06:36 AM

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Hallo everyone. Firstly let me say what a great site - so much info in one place, I need to spen a couple of days reading! :blink:

Anyway, I need help please; I have been diagnosed with Graves and my thyroid was overactive. It took about 9 months of carbimizole but it then became under control. I was so ill before being diagnosed - my bones hurt, my muscles ached, I had NO energy and put weight ON and was hot all the time.

I was suprised I was overactive because of the weight gain and the fact I had no energy - reading up on thyroid disorders I thought you lost weight etc? Anyway, it seems to be under control BUT: I have lately been getting hot flushes, an intense heat coming from inside that lasts a few minutes, I have not lost any weight even though I am excersising and eating less.

I know many of you on here have bigger problems than me (sorry x) but I don't know if my weight will ever go back to normal???

I jhave just had a blood test again to see if my thyroid is playing up.

Is it possible that my inability to lose weight is due to my metabolism playing up? ie going from under to over active and back?

PLEASE HELP!

Btw I am about 2 stones (28lbs) overweight.


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#2 mmztcass

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Posted 15 August 2010 - 03:08 PM

Hi and welcome:

About 15% of people with GD will gain weight inside. I am not sure why. Weight gain can also happen if thyroid levels are off and if one is heading hypO or being overmedicated...

How about sharing your lab results (hopefully the Free T3 and the Free T4) so we can better help you and get an idea if you're on track with things and for the ATD (antithyroid drug) Carbimazole you are taking.

{{{hugs}}} :)

#3 AngelTrujillo

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Posted 16 August 2010 - 01:05 AM

Clarabucket,
I am sorry abotu yoru waight gain. I am also one of the few that gained wait while hypER and then when I whent hypO. Just not fare for us to have to go that way.
I think most of us know all about those hot flashes. I hate them and I started gettting them when I was 24.
It is your thyroid most of the time. I do know that thyroid controls or goes along with sex hormones. You might want to have those checked as well.
Don't forget to get your Free T 3 and Free T4 checked and ask for a copy of you labs and you can post them here and get help reading them and help finding YOUR set point with in the normal range if you would like.
I hope I helped you in some small way LOL. I know this is all hard to take in right now. Just read slowly and reread until you understand it. Aks questions all you need to, there are always people here to help you out!!


Angel

#4 Lakelover

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Posted 16 August 2010 - 04:22 PM

Anyway, I need help please; I have been diagnosed with Graves and my thyroid was overactive. It took about 9 months of carbimizole but it then became under control. I was so ill before being diagnosed - my bones hurt, my muscles ached, I had NO energy and put weight ON and was hot all the time.

This tells me your FT-3 might have been high, do you have any lab work with ranges you can share?


I was suprised I was overactive because of the weight gain and the fact I had no energy - reading up on thyroid disorders I thought you lost weight etc? Anyway, it seems to be under control BUT: I have lately been getting hot flushes, an intense heat coming from inside that lasts a few minutes, I have not lost any weight even though I am excercising and eating less.

Take a serious look at what you are eating - if it's a good diet then you might be one of those people that gains while hyper.

I have just had a blood test again to see if my thyroid is playing up.


When you get your labwork please post it along with ranges.

Lakelover


#5 clarabucket

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Posted 17 August 2010 - 10:19 AM

Thanks everyone for your help.

I was stupidly going along with everything my doctor said so never even knew I should be questioning the results! This site has really opened up my eyes - I am needing to read and re-read everything!
I am also English (is this site mostly USA?) and so not sure if our Medical systems are the same as our American cousins' - I guess they are??

Thanks for making me feel welcome and for your help. I will post up my recent lab results as soon as they are availabe as I only just had a new set of bloods taken a couple days ago (takes about a week here to get results).

I have been off Carbimizole since March (after being on it for nine months) and my thyroid was showing normal.
I felt normal for a while, but recently the hot flashes have started again....put it this way - I never seem to feel the cold!!

I never got the palpitations as bad as alot of people on here I have read about - and the shakes weren't terrible either, but I was so incredibly achey...I used to feel as though my very bones had shooting pains...

edit: Since writing this I phoned my doctors to see if they were back and was told my TSH was normal.
So why am i still getting hot flashes and feeling a bit lethargic and achey?

#6 mmztcass

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Posted 17 August 2010 - 11:31 AM

Thanks everyone for your help.

I was stupidly going along with everything my doctor said so never even knew I should be questioning the results! This site has really opened up my eyes - I am needing to read and re-read everything!
I am also English (is this site mostly USA?) and so not sure if our Medical systems are the same as our American cousins' - I guess they are??

Thanks for making me feel welcome and for your help. I will post up my recent lab results as soon as they are availabe as I only just had a new set of bloods taken a couple days ago (takes about a week here to get results).

I have been off Carbimizole since March (after being on it for nine months) and my thyroid was showing normal.
I felt normal for a while, but recently the hot flashes have started again....put it this way - I never seem to feel the cold!!

I never got the palpitations as bad as alot of people on here I have read about - and the shakes weren't terrible either, but I was so incredibly achey...I used to feel as though my very bones had shooting pains...

edit: Since writing this I phoned my doctors to see if they were back and was told my TSH was normal.
So why am i still getting hot flashes and feeling a bit lethargic and achey?



You need to know what your Free T4 is doing. Since you are from the UK, Lolly another board member is from there as well as couple of others and can help and point you the right direction on where you can get the Free T3 done at a cost.

TSH is falsely skewed by thyroid antibodies, and is a Pituitary hormone and not a reliable source in checking how any thyroid disease is doing. It's the Free T3 and the Free T4 that tells how one is doing.

{{{hugs}}} :)

#7 cd3764

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Posted 17 August 2010 - 11:32 AM

We have many people from the UK on here. While our lab ranges and values might be somewhat different,
proper treatment for Graves' is universal...although many doctors don't seem to know how to provide
proper treatment.

It's hard to comment about your symptoms without seeing your labs (with ranges - usually noted to the
right hand side of each lab value and often termed something like "reference ranges" or "normal ranges")

Please note that, for most Graves' patients, TSH is suppressed (below range) for a very long time - many
times even after remission. (I am a prime example - please note my signature).

You see, as long as Graves' antibodies are present, they can falsely skew the TSH.

Treatment for thyroid disorders should be based upon the actual thyroid hormone levels (FreeT4 & FreeT3).

TSH is a pituitary hormone and, while it is good for screening purposes and other types of evaluation, it
does not provide good information as to what is truly going on with the thyroid.

It would be great if you could post as much lab history as possible, noting any meds doses and symptoms
that might have corresponded to the labs.

You could take a peek at my signature to get an idea of one way to do it..

PS for whatever it's worth "MMI" stands for methimazole which is pretty much the same thing as the carbimazole
you were taking.

#8 clarabucket

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Posted 19 August 2010 - 05:09 PM

Oh My god! I did realise all this! I got my blood results back from the lab and the Doctor's receptionist happily told me everything was "normal" and I did not need to come in to see the doctor!!

I am due to go on holiday Friday 20th (tomorrow) so I will pick up a copy of my Lab results and post them all here either tomorrow morning (if I have time) or when I return asap.

I knew I disn't feel right :-(

You people have been so informative and so supportive - I feel quite emotional to read all this and all your stories (a symptom of mine - I cry easily)

I will look back on here in 10-11 days after my holiday and give my lab info/read your replies.
Thanks again xx

ps think we are on different time zones there's never anyone here when I am hahahahaha

#9 cd3764

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Posted 19 August 2010 - 06:35 PM

Well, I'm here a little after you....you're able to stay up much later than I can :)

Anyway, I will look forward to seeing your labs.....having a "normal" TSH after 9 months of carb has me thinking, that's for sure.

The only time I had a "normal" TSH was when I was overmedicated on methimazole so I do wonder about your situation.

Please realize that some hyPO and hyPER symptoms overlap (fatigue, weight gain, heart palps, etc).....and, when thyroid hormone
levels are moving, we can have both hyPO and hyPER symptoms so it's really hard to say what might be going on with you.

Labs usually tell the best story.

And, many doctors will tell us our labs are normal when the levels are in range.....that doesn't mean the levels are YOUR normal.

Since most of us don't know what levels we had before we got sick, the absence of symptoms at a certain level helps us to
determine our "personal best" level....if you take a peek at my most recent labs, you will note that I finally found my setpoints
(personal best levels) for FT4 and FT3.....3 years after my Dx.

If a patient is being cared for by a competent doctor, he/she can expect to feel better MUCH sooner....and stay that way.

Finding a competent doctor sometimes seems harder than dealing with the disease itself.

#10 mmztcass

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Posted 19 August 2010 - 08:32 PM

Yes, as cd says. We'll wait to hear back from you. In the meantime enjoy your holiday.

{{{hugs}}} :)

#11 clarabucket

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Posted 20 August 2010 - 07:31 AM

Ok guys, here for you to decipher. my lab results:

TSH (KGH)
Serum TSH level (ZaELV) 1.49 mu/L (0.35 - 5.5)


Urea and electrolytes (X77Wi)
Serum sodium level (XE2qO) 139 mmol/L (135.0 - 145.0)
Serum potassium level (XE2pz) 4.3 mmol/L (3.5 - 5.0)
Serum Urea level (XMOlt) 5.9 mmol/L (1.7 - 8.3)
Serum creatine level (XE2q5) 71 umol/L (58.0 - 96.0)


Liver funtion tests
serim bilirubin tests (44E..) 11mu/L (1.0 - 17.0)
serum alkaline phosphatase level (XE2px) 85iu/L (42.0 - 128.0)
Serum total protein level (XE2e9) 74 g/L (64.0 - 83.0)
Serum albumin level (XE2eA) 43 g/L (35.0 - 50.0)
Serum globulin level (XE2eB) 31g/L (18.0 - 36.0)
ALT/SGPT serum level (44G3) 17iu/L (0.0 - 40.0)


ESTIMATED GFR (eGFR) >60


(I also asked to check for early menopause):

Serum follicle stimulating hormone level (XMolx) 21.5 iu/L

Adult FSH reference ranges are: Follicular: 2.5 - 10.2
OV peak: 3.4 - 33.4
Luteal: 1.5 - 9.1
Post menopause:23.0 - 116


I do hope these are clear. I have typed them just as they were given to me.
I am 40, white, english and in reasonably (hahaha except Graves disease) good health.

Thank you in advance, back in 11-12 days

Claire xx

#12 mmztcass

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Posted 20 August 2010 - 08:02 AM

Hi Claire:

Your doctor is dosing you according to the TSH which is falsely skewed by thyroid antibodies, a Pituitary hormone and not a reliable source for the Carbimazole you took to test by. The Free T3 and the Free T4 (especially is dosed) by the ATD that one takes.

Insist on the Free T4 test to see where you are at. The Free T3 test will need to be ordered and paid for yourself at another testing facility if some of the UK members will pop in here with the name of the lab to get it done at.

I found it: www.lab21.com
It costs 48 pounds (excuse the pound word as I am from the USA and do not have pound symbol to access to easily at my computer). You can order a Free T3, Free T4, and TSH if your general doctor will not run these.

You can follow to this link as well:
http://www.lab21.com...are/thyroid.php

{{{hugs}}} :)

#13 clarabucket

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Posted 31 August 2010 - 11:54 AM

Thank you very much, I have only just got back off holiday but will certainly, absolutely follow your link and request a new test.

Will pop back later x

#14 cd3764

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Posted 31 August 2010 - 02:07 PM

Hi Claire

Sorry I missed your lab post.

Wow - the only thyroid test your doc ran was TSH! Sorry to say, this is a recipe
for disaster.

I think that, after reading the various earlier posts, you understand why TSH is not
a good indicator for your progression with Graves' disease.

Based upon the fact that your TSH is "normal", I doubt you're hyPER....your symptoms
might actually be an indication of too-low-for-you thyroid hormone levels.

If you truly want to know what is going on with your thyroid, you do need the Free T4 (T4, free, direct)
and FreeT3 (Triiodothyronine, free, serum) tests.....these are measurements of the thyroid hormones
used by the body and are fully available (aka "free") to meet the body's needs.

(some doctors only run "plain" T4/T3 tests or total T4/T3 tests....these aren't as good since they measure
thyroid hormones that are bound to proteins and affected by the foods we eat as well as our female hormones)

I am not that familiar with the other bloodwork you had done - here's a link to a site that should help you
interpret the various tests and their results:

http://www.arupconsult.com/index.html

Once you get the FT4 and FT3 tests run (also have a TSH done at the same time), please share the results
(with ranges) here.....also list any symptoms you were having at the time of the labs.....we'll help you sort
through things.

All the best,

Carol

#15 clarabucket

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Posted 01 September 2010 - 09:42 AM

Thanks Carol, I have learned so much by logging onto this forum - it's a Godsend, truly!

I am going to my GP's tomorrow anyway, as I broke my two fingers whilst in Bulgaria last week and need to see her about that. I am going to ask for the FreeT4 and T3 tests.

I will let you know what happens.
I get the impresson she knows very little about this disease :(

#16 cd3764

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Posted 01 September 2010 - 01:31 PM

Anytime, Claire - we're all in this together.

Sorry to hear about your broken fingers....glad to hear you'll be getting FT4/FT3 tests.


I have been participating on thyroid forums since my Dx in June 2007 - docs not knowing how to treat
thyroid issues in general seems to be a universal problem.

I was very fortunate to have found this site (formerly called Mediboard) after my GP discovered my
hyperthyroidism as a result of the bloodwork for my annual physical.

The people on here taught me a LOT and pointed me in the right direction for research.

It has become quite clear to me that those of us who are finally feeling well with our disease can
pat ourselves on the back because WE made it happen.

Unfortunately, many of us (including me) suffered at the hands of clueless docs.

PS you might want to print out the information on these links which explains the benefits of the FreeT4
and FreeT3 tests in case your doctor doesn't see merit in them:

a "technical" approach:

http://www.ncbi.nlm.nih.gov/pubmed/12915350?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed

and, one in "English"

http://graves.medshelf.org/Lab_Tests

Many of us are "on" our second, third, fourth, etc. doctor.

The best thing you can do for yourself is to learn as much as possible about your disease and
be proactive with your care.

We'll gladly help you along the way.

All the best,

Carol

#17 clarabucket

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Posted 01 September 2010 - 02:40 PM

Hi Carol,

I have already printed off the info - great minds think alike! ;)

To be honest, the Americans seem far better with all the technical stuff than us Brits....You all seem very clued up, I respect that actually and have much to learn it seems...We in the UK tend to believe what our doctors tell us as gospel.

I am going armed withb info tomorrow, including a link to this forum :D

Thanks for the sympathy re my fingers - it is causing me to type terribly as my plaster cast keeps hitting all the wrong keys!!

#18 cd3764

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Posted 01 September 2010 - 03:36 PM

Hi Carol,

I have already printed off the info - great minds think alike! ;)

To be honest, the Americans seem far better with all the technical stuff than us Brits....You all seem very clued up, I respect that actually and have much to learn it seems...We in the UK tend to believe what our doctors tell us as gospel.

I am going armed withb info tomorrow, including a link to this forum :D

Thanks for the sympathy re my fingers - it is causing me to type terribly as my plaster cast keeps hitting all the wrong keys!!


Hello again Claire!

:)

I don't know if Americans are better with the technical stuff.....I will say that the members on this particular forum are better with it only
from my experience. Some other forums are chock-full of misinformation.

I think many of us used to believe what our doctors told us. And, I think it is only from suffering from doctor's errors that some people
decide to educate themselves and be proactive with their care......this seems to especially apply to Graves' patients and those with
other thyroid diseases.

Please do not take offense when I make this next suggestion - I'm not so sure you'd want to link your doctor to this forum. Many docs
have sensitive egos and do not appreciate it when their patients seek advice from the general populace.

In fact, based upon my own personal experience, many doctors even have "issues" with studies I've brought them. It seems docs are
more receptive to things in book form that have been written by doctors.

That said, if you have access to "Thyroid for Dummies" by Dr. Alan Rubin and/or "The Thyroid Solution" by Dr. Ridha Ahmen, they would be
a good read for you.....and to share with your doctor.

Another great read is "Graves' Disease - A Practical Guide" by Elaine Moore. Elaine has her own website that is HON-certified (this is a
certification given to medically-oriented websites as confirmation that the information is accurate....sites like the Mayo Clinic, WebMD, etc.
are HON-certified). Here's her site: www.elaine-moore.com You will note Elaine's excellent credentials so any information printed off from there
might be better accepted by your doctor.

All of the books are available on Amazon.com (not sure if they ship to the UK but thought I'd mention)

Information is power!!!

Please keep us posted.

All the best,

Carol

#19 Monica

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Posted 01 September 2010 - 05:26 PM

We in the UK tend to believe what our doctors tell us as gospel.


Don't feel bad, the majority of Americans feel that way too. This just happens to be a group of women who were tired of feeling like crap and became proactive. We are not the norm in this country.

#20 clarabucket

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Posted 02 September 2010 - 02:53 PM

Hallo Carol (again) and hallo Monica (nice to meet you)

Monica, just from reading this forum it just feels that you all seem so much more informed! It may have to do with the fact that we have the NHS (free) and so don't part with money and are a bit blase about it all.
In any case, the very fact that we are all taking our knowledge and using it to better ourselves is all good! :D


Carol, I have bought the Elaine Moore book from Amazon - was 30 (abour $60??) but well, well worth it!! I took it away with me and made it my poolside reading (got to read more than I expected due the fingers and arm in a cast :rolleyes: )

I have been to my docs this morning and given her the links, I also said I didn;t wish to insult her kknowledge - but she accepted she knew little about GD and has given me a form for a blood test for Free T4 and freeT3 - I am going tomorrow morning.

Thanks again, and I will report back!

My hand hurts if I type too much so I am off to read some more of the forum.

Speak soon, take care x





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