Graves disease

Hormones
21

Hi Christine

​Thanks. I will take a look . Catch you later.

 

22

Hi Cindy  

I'm a little confused  sent a message to Karen 30258 and got a message from you  ?

Christine

23

Thanks for these Christine. I agree with your comments that it is a indeed a horror story, one that is much too common. However thankfully things are being looked at and sorted.

​I have just been researching levothyroxine and some of the other thyroxine producrs, it is quite interesting actually.

​

24

Hi Christine

My e mail system is messed up hence u getting someone elses name on the postings.

If you wish I can send you my e mail address to void any further confusion.

Anyway thank for the info. It is very interesting and helpful and expliains why I feel very similar to yourself.

​I had blood results similar to yours . The TSH varied over the months but no one informed me that the TSH can vary throughout the day. This led me to do further research and I discovered that various studies on volunteers showed that the TSH can vary every thirty minutes!!

​

 

25

Regular L-Carnitine can indeed be purchased from a Health Food Shop.  Carnitine is an amino acid that is normally produced in the body but it gets lost from the muscles through urination when patients are hyperactive.  I got mine tested before I started taking the supplement.  The tests are for Free Carnitine and Total carnitine and I was deficient as are most hyperthyroid patients.  Hyperthyroid patients are also deficient in vitamin D and I tested deficient in that also.  So supplementing with vitamin D3 also helps.  I was not deficient in but I was low on Magnesium and added that one too.  I would advise you to do an Internet search on the topics of Carnitine and hyperthyroidism.  I added it to my treatment regimen after seeing a research paper done by an Italian endocrinologist on this subject.  You can definitely tell your doctor about it because he won't know about it, I guarantee it.  Doctors are not trained that way unfortunately.  But if you want his approval to take this, you are not likely to get it because he doesn't know about it and most docs are not open to learning.  For myself, I told my Endo when I took Acetyl-L-Carnitine because it had a dramatic effect on my TSH level and he was stunned.

26

Thanks.

27

Surely Karen. I have no issues. I also had a the road uptake test. They injected me with radioactive iodine tracer and scanned my thyroid after intervals. It showed very high uptake, swelling but no nodes, thankfully. My initial blood tests were total so here are the values. T3-13.9 T4-30 and TSH<0.001 nearly zero. Now my blood test was free one. Values now are FT3 2.65 FT4 1.02 and TSH 10.549. HOPE IT HELPS

28

Hi. I forgot to mention I was never aneamic. I was also given betablockers since my heartbeat was way up. Doctor got so scared that he got an ecg done. And calcium supplements.

29

Thank you Christine we have booked an appt with her gp for next week and will ask for the printouts, he just said yesterday her t4 was over 60 and t3 was over 30 (he said the count stopped after 30 ) he was very willing to spend loads of time with her and i think she will get great care from him, i went into panic mode yesterday but today have decided the best help i can give her is to research like you suggest and just be there for support, i do appreciate all your fantastic comments on here it helps x

 

30

Hi evergreen

May I ask you what dose of carbimazole you were prescribed?

Is it possible to send your blood results at all?

Were all the thyroid screening tests done?

Did you have any anibodies?

Hope you don't mind my asking. I am fed up wih beng fobbed off.

Karen

31

Thanks Daku. What is your heart rate? Is it under control?

Sorry about asking.

32

Yes, as I am terrified of new meds, the doctor put me on a low dose of 15mg to start with and has just upped it to 20mg. He wanted to go higher but agreed due to my sensitivity to drugs to wait until my blood test in two weeks time.

33

I don't have my results as haven't asked for them. Doctor just said I was very high. No antibody testing done as far as I'm aware. I had an esp test and calcium/bone test. No isea what the results are. I suppose I ought to ask but I don't like to.

34

Hi Pippa

What do you mean by block and replace? Is this done in the UK? 

Sorry posting is brief but I am feeling unwell again today!!

Have had several panic attacks as not yet treated for hyperthyroidism!

I have to choose between carbimazole and RAI .

Feel sick with worry yet scared of continuing signs and  symptoms.

 

35

Sorry were your antibody tests repeated? Thanks 

36

Hello evergreen

Thank you for your reply.

Karen

 

37

Meant ers test! lol

38

Hello,

'blocks and replace' treatment blocks the production of the body's natural thyroid hormone which is in overdrive the Graves. This is what the carbimazole does. Levothyroxine replaces it with a more 'normal' level of thyroid hormone. We live in the UK and this has been the treatment my daughter has received. Longer term her Endo is suggesting the options are surgery or RAI but we are researching iodine. Perhaps you could explore taking carbimazole until your condition is more stable and you've read up some more on the options you have.

all the best. 

39

Hi karen. Yes, my heartbeat is normal now. Has been for quite sometime. Betablockers were stopped then. I dint understand what you meant by anti bodies? T3 T4 TSH are repeated every 3 months. ANTI-TPO was done once to confirm graves.

Hope I was helpful

40

Thanks evergreen.