I am wondering if the doctor is only speculating Graves disease. Any GP or MD can oder the needed tests. I was tested with my OB.
Its a simply order of labs. TSH - Free T3 - Free T4 and TSI.(TSI is the basic Graves lab) Also you should call your primary doctor and push for these labs prior to seeing the specialist - along with a Thyroid uptake scan and push to get that BEFORE you seek a specialist. There is absolutely no reason why a GP can't order those tests.
This way your not wasting any time. The specialist will be able to view all the necessary tests at your fitst visit - vs - waiting for HIM or HER to order the tests and wait another couple of months to see them again to tell you what's really up.
Hi Stella
Thanks for replying.
Yes. they did do a TSH - that was the result that alerted them that it wasn't a heart condition - then they did T3 and T4 and said they were very high - i recall numbers they mentioned like 41 and 43 for T3&T4 (I maybe wrong - but I will ask for a copy when we next see the family doctor) but I can't recall them saying anything about a TSI. So I will definitely ask for that one to be done. You are right though - better to have all the tests done before we see the specialist so we get all the answers when we see him.
Did yours end up Graves?
The TSH was used for diagnoises on me... but I have learned that - alone - is not the tell all.
Recheck his labs - (get a copy of his tests) If you are getting T3 and T4 - that is useless testing - its the stored total hormones.... that do nothing - or go nowhere.
The Free testing - freeT3 - Free T4 - or may be written FT3 and FT4 - is what you want him tested on.
TSI - There's a few Graves TSI tests but most likely a TSI - 1 will be fine. Graves testing is critical - tell them to run that test = prior to seeing a specialist. That will show if there is autoimmune antibodies that are the issues of his hyperthyroidism. And it will save you time and cash if you get this done first.
I tested positive for Graves when I had the test done and recovery after treatment was not pleasant for me. Make sure both you and him are reading all there is on Graves and hyperthyroidism. It's so very important and could help you conquer this.
Hi Stella
A lot has happened since last I wrote. We went and saw the endo and he was nice. He reduced the dosage of Neo-Mercadole from 9 tablets a day to two tablets a day. He asked that my son phone him after his weekly tests. He requested weekly becusae my son is moving to the US for a long-ish period. But....we didn't know that we were going to get a cow of a doctors secretary. She won't put my son through to speak to the doctor after every test. She just says, the doctor said to continue with the medication as it is. I DON'T believe that she is checking with him. His Free T4 is dropping below the normal range and I a worried his is becoming hypothyroid. He is about to leave in 3 days for the US and having one last test before he goes. I feel like screaming. This woman is driving me to insanity. It is not enough that people have to deal with illness and disorders they have to put up with people like her. Arrgghh.
I think if his Free T4 drops after the next test and she says to continue, either I will scream at her (I'd like to strangle her really) but I think I will just ask my son to reduce his medication anyway. Not sure what dosage to reduce it to - maybe 2 in one day and 1 in the next day. Here are his resuts. Any advice would be much appreciated.
COLLECTED 3 feb 2010
TSH – 0.84 (0.40 – 3.50)
FREE T4 - 6 .6 (9.0 – 19.0)
FREE T3 - 4.4 (2.6 – 6.00)
COLLECTED 27 JAN 2010-02-08
TSH – 0.06 (0.40 – 3.50)
FREE T4 - 8.7 (9.0 – 19.0)
FREE T3 - 4.0 (2.6 – 6.00)
COLLECTED 18TH JAN 2010
Wcc : 5.6 ( 4.0 – 11.0)
Platelets 235 (150-450)
Tsh Receptor Antibodies – 10.9 IU/L
2 IU/L Positive
TSH: <0.005 (0.4 -3.50)
Free T4 9.7 (9.0 – 19.0)
Free T3 4.9 ( 2.6 – 6.00)
Collected 17 Dec 09
TSH 0.96 * 46.1 pmol/L (2.6 – 6.0)
Collected 16 Dec 09
Thyroglobulin Ab 24 IU/mL (0-40)
Thyroid Peroxidase Ab <10 IU/mL (0-35)
Collected 12 Dec 09
Thyroglobulin Ab EIA 65 IU/ml (<150)
TPO /Microsomal EIA 6 IU/ml (<50)
TSH <0.03 mU/L (0.40 – 4.00)
Free T4 76.4 pmol/L (10.6 – 20.5)
Free T3 40.7 pmol/L (3.3 – 6.2)
With the FT4 being so low yet the Ft3 up to a high level (near end of scale) I would say your son is suffering from T3 Toxycosis.
It is the FT3 that causes the hyper symptoms.
With the FT4 being low, the anti-thyroid meds are doing their job and I dont see any sign of Graves Disease as the TSI test wasnt done (thyroid stimulating immunoglobins).
I would be asking for a beta blocker to try and get the Ft3 down a bit.
The TSH has come up which is a good sign for hyperthyroid.
With your son having Cerebral Palsy, it is known to cause thyroid problems (which I am sure you are aware of).
With antithyroid meds, it is very hard to control hyperthyroidism.
If you cut the meds down too much, he will go hyperthyroid very quickly (within days sometimes).
The problem with anti-thyroid meds is that you can go from hyper to hypo within 2 weeks if on too large a dose. Yet if it is stopped or meds cut down too fast, hyperthyroidism comes back just as quick.
I would say that the best thing would be to ask his Doctor for a beta blocker to stop the FT3 causing hyper symptoms.
Something is causing the FT3 to rise high...usually it is Thyroiditis or T3 toxycosis and the only way to get that FT3 down is beta blockers.
If the anti-thyroid meds are cut down, I can guarantee the FT3 will rise quickly.
I would be asking to talk to the Doc...tell the receptionist that you will keep calling until you do.
Sometimes with Cerebral Palsy...the thyroid will flare up then 'right itself' but to be on the safe side, I'd be asking for an ultrasound to be done as there may be nodules on the thyroid causing these symptoms.
At some stage the anti-thyroid meds will need to be cut down but they wont cut them down while the FT3 is a lot higher than the FT4.
I will ring and harrass him again today.
Would the re-uptake scan that he had at the begining now show nodules?
Also - do you mean with Cerebral Palsy link - do u mean that the thyroid could right itself eg. temporary thyroiditis- permanently, or do you mean that the up and down with meds with settle?
If there is no sign of Graves then its a guessing game as most times..hyperthyroidism is temporary BUT can come ...just as T3 Toxycosis can.
Cerebral Palsy is not an Autoimmune Disease, its where the brain has been damaged in some way usually while in the uterus or when born.
Most think CP is Autoimmune...its not.Muscle tightness is usually a major factor in CP.....but it also upsets the immune sydtem.
The thyroid regulates ALL the organs and when that is upset then obviously ...there will be other things going on.
Until Graves Disease is ruled out, no-one can really say whether your Son will remain like this with hyperthyroidism or whether it will subside.
Usually with Graves...a permanant treatment is sought because of the complexity of managing the levels. With hyperthyroidism..if the levels are too high then 'Thyroid Storm' can happen and this means Atrial Fibrillation and Palpatations.
It can be life threatening if not treated.
Most Doctors/Endos will 'err on the side of caution' and would rather have someone with Graves moreso hypo than hyper.
I realise that with the CP, your Son would have muscle pain and being either hyper or hypo...he will have this too but it is important to rule out Graves first and foremost.
Was the normal range of Tsh Receptor Antibodies – 10.9 IU/L with the reference range of <2 (under 2) as normal?
If this is the case, then I would say that your son does have Graves BUT as I said ..the 100% proof is the TSI test.
Without that...no-one can diagnose Graves Disease.
No ultrasound, no uptake scan...nothing.
An ultrasound picks up any nodules.
The uptake scan picks up how 'hungry' the thyroid is. If it is hungry then he would be most definately Graves if the TSI confirmed high antibodies too.
I know I'm a pain in the butt keep going on about the TSI but it is so important as many people have permanant treatment being told they have Graves...only to then find out, they didnt.
I have Graves Disease which undiagnosed for many years has resulted in Mitral and Tricuspid Valve Prolapse (this is quite common with Graves).
Ask for a referral to a Cardiologist and get a DOPPLER Ultrasound done to rule this out too.
Devastating...isnt it?
But the thing is...the more knowledge you have, the wiser you are and the easier it is to manage.
Research all you can on Graves and Hyperthyroidism...you wont regret it.
I had RAI June 2008 and then Thyroidectomy Sept. 2008 and havent looked back.
Yes Ive had my 'hiccups' with being hypo and hyper but nothing like before RAI.
I was permanantly in an ambulance at least twice a week with thyroid storm and fibbrillations.
Something I wouldnt wish on anyone.
And no you arent an interfering Mum...you are a great mum !
Hi There
Apparently we don't have TSI tests here - i asked the GP to put it on his first test as a request and she did (becusae she didn't know of its unavailability) but when we went to the endo i asked him for THAT result and he said we don't have it available.
My son leaves in two days to go to the US - i will get him to find out how expensive the TSI is - and if its not too bad - i will get him to have one there. I am assuming ultrasounds would be expensive there? If they are - i will insist he have one with the second opinion endo appontment he as at the end of April.
I still don't know if he should change his dosage becuase of the T4 - but i have contacted my ex-boss who is a specialist doctor and she said she is friends with this endo - she will tell him what his secretary is doing (not passing on the information). My ex-boss said that my concerns are justified (that's to you guys on the forums) otherwise i would have been a dumb sheep patient just listening to her doctor or secretary. I should know better. I am a big advocate for second opinions - i tell friends and others always get a second opionion and here i am - i haven't been listenign to my own advice. The reason my son has cerebral palsy in the first place is because of doctor negligence -but i was too sweet and quiet back then to question or argue with the doctor.
I am hoping he will contact us tomorrow!!
I am glad you are back on track. Did you have Thyroidectomy becuas RAI didn't work. from what i read- it's difficult to have it removed after you have had RAI. Didn't the RAI work for you? I think RAI is the last treatment option from what i am reading everywhere.
With your thyroid storms, were your lab results showing very off levels - or they looked ok. that's awful that you went through that.
I am so glad you are feeling better.
It's terrible before all this with my son - I would never have understood the plight of thyroid patients. I always thought of it as a little hiccup in life. I guess every problem we experience makes us a better person and understand the problems of others.
Take care of yourself and thank you for your advice and even listening. I think i would have gone insane if it wasn't for the forums.
I wish this was around back in the days when he was first diagnosed with CP.
Again - thank you!
I had RAI done first as a throidectomy was too risky as I have a heart murmur, atrial fibbrillations from thyroid storms (heart rate was uncontrollable ) and also 2 leaking valves (tricuspid & mitral). Doc and Endo said surgery was too risky.
RAI was scheduled for June 13th but I cancelled (like a chicken) because it turned out to be FRIDAY THE 13TH! lol.
As it turned out...3 days before RAI (27th June 2008) they found my whole thyroid had cancer (thyca) so RAI was done first to stop the fibbrillations and to slow down the thyroid going into overdrive all the time then a TT was scheduled 3 months later. I was HYPO 5 weeks after RAI......and to avoid any complications with the surgery, I had it done keyhole(under the armpit ) with 2 Epidurals in the neck. I was awake for the procedure, went in at 7am and was home in time for a late dinner the same day.
I never in my wildest dreams knew that the thyroid could cause mental and physical problems and prior to this, I suffered from Agoraphobia for 26 years.
The day I had RAI ...was the day my life turned around.
The Agoraphobia eased off enough for me to be able to deal with it all.
I got my life back after RAI.
The surgery was an easy one because after RAI...the thyroid shrunk in size.
I had no parathyroid damage, no side effects from it other than low calcium which is a trait with Graves Disease.
I have dealt with more stress in the last 6 months that I have in my lifetime and yet I am still here to write these posts.
My levels have gone 'wonky' a few times so to speak but at least now I know what to do, know the dose to take depending on symptoms but only because I journalled my symptoms daily.
Whenever I am not sure from symptoms, I look in my journals and see a distinctive pattern and refer to that.
I now feel like I have a life whereas before RAI, I was a total basket case.
Graves disease can be so debilitating and for your Son to have CP too...he would be going through he//.
Get the answers he deserves.
After all...once a Mum, always a Mum.
Hugs x
Wow. You have been through a hell of a lot too.
The heart problems and then the agoraphobia.
My son started having panic attacks. I said to the doctor it didn't feel right for him having panic attacks as he is physcholgically probably the most strongest person around (i am NOT - i have suffered depression) but he is so strong and adjusted it's amazing. The doctor now says it was probably the thyroid all along that started the panic attacks. It is incredible what the thyroid can do. I learn every day.
I thank God you are around to write these posts. HOnestly, I don't know who i would have turned to if you guys weren't around.
Thank you also for telling me about the keyhole surgery - because as a last alternative, we have discussed surgery but not RAI - he won't do that. I was worried about the scarring. I know that's something ridiculous to worry about - but his legs are a jigsaw puzzle with scars. He had his legs cut of and put inanother position when he was 13 and had archillies, hamstring tendons etc all lengthened. Having scaring to top part of his body worries him. So its nice to know there is an alternative.
Less than 24 hours before he leaves for the USA - i will get him to have a TSI done there and hopefully get some answers.
Again, thank you - and yes - you are a mum forever no matter how old they are.
We just got the last lot of labs done and results are starting to look good (at least, they do to me). But the endo said to continue on the same dosage. Next blood test not due for another month.
COLLECTED 15TH FEB 2010
TSH 2.74 (0.40 – 3.50)
FREE T4 9.4 ( 9.0 – 19.0)
FREE T3 4.8 (2.6 – 6.0)