Graves Disease / Hyperthroidism

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Hi there,

I'm a 28 year old male who is pretty fit and healthy. Recently I was diagnosed with mild Graves' disease - after about 2 years of regular blood tests.

Initially I was seeing a GP who was getting me to do bloods every couple of months to monitor my TSH levels. I got progressively worse, started to get extremely tired but at the same time not sleeping at night, feeling stressed, shakes, not sleeping well, not hungry, really struggling to concentrate and do my job at work - to the point where I was having to just leave. I also was starting to feel really depressed for no reason and was crying randomly. I was at breaking point so saw my GP again and demanded something be done at which point he put me on antidepressants and after 4 weeks there was no change.

Decided that I needed to change GP and after more tests the new GP has said I have Pyrrole Disorder which I am being treated for with various supplements / vitamins.

The new GP also picked up on my TSH levels being slightly higher than normal so had a MRI done which confirmed there was an issue with my thyroid. He then sent me to see an Endocrinologist who has said that it appears I have mild graves. He has put me on Carbimazole 5mg twice daily along with Deralin 10mg 2 twice daily. 

My TSH level sits around .18, my T4 is 18.1 and my T3 is 5.4. 

I have had a bit of time off work lately about 3 weeks and just don't seem to be getting better. I have days where I feel good but then days where I feel terrible. After taking 3 weeks off work to let the medication kick in I started to feel better and then went back to work in which I only lasted 2 days before I felt terrible again and could be in that environment. I am really struggling to focus with little things like writting emails, spelling etc. Seems like I have brain fog all the time. 

I am hoping for some advice. Reading these forums it seems my TSH is very low compared to others. Should this be effecting me this much? Is brain fog common with Graves? I am in a Creative role / environment at work and just feel I have nothing to give at the moment. 

Any advice, thoughts, feedback would be greatly appreciated. 

Thanks

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12 Replies

  • Posted

    Jason ,

    i'm so sorry youve  put up with so much over the past couple of years .. all because of a doctor who has no idea how the thyroid works and how to treat it !

    Many doctors i believe, are only given a set number of hours on the thyroid in their  studies and it's no wonder they're left clueless as to the treatment available .

    I know how you be been feeling Jason, two years ago i was in a dreadful state ...muscle pain, anxiety through the roof, feelings of terror, hair falling out , no eyebrows 

    nails ragged and toenails falling out .....a few more ... and yes brain fog, feeling as though you cannot think clearly......and the feeling of not being able to finish a sentence  ...  or to even find a simple word .

    So, you've come to a good place for help , there are many of us on here who have found a way through this Thyroid disease ..Graves' 

    When I was told by my doctor, after a long time of thinking i was going Mad , that i had Graves , he said ..don't worry, we'll give give you a pill   ( Radio Iodine )  and that will get rid of i t and if that doesn't work ... Surgery.

    I was horrified ... I said ... Well if it's an Auto Immune Disease  , then should i not be addressing my Immune System  ???

    he scoffed and said ..  Ha .. that would be much too complicated !!

    That was the day i decided that i would self medicate my Immune System.

    Firstly I went privately to see an Endocrinologist...   he gave me Carbimazole 

    ... he started though with a high dose ..   20mg per day   

    ... after about a month down to 10mg per day ... and then 5mg .

    It worked well but i wasn't happy to stop then as i still felt ' high '    but was assured i'd be fine.. and that the Hormone is still active within the body for quite a while after the carbimazole had done its  job !

    and he was right everything started to calm down...

    i started to take something called Regular L Carnitine ... ( not acetyl carnitine as i thought and had read that it may be to strong )    google them both to see the benefits I then made my self a regime of taking a variety of vitamins minerals and nutrients to try to calm my Immune system ... so that it would leave my poor Thyroid Gland alone and allow it to go back to its normal state.

    Graves disease robs the body of so many vital ingrients ... and the immune system needs those ingredients to do it's vital work.. ie fight infection, viruses eats.. it cannot do that if it's stores have been depleted.

    ..and since 80% of the immune system is in our Gut .. then that is where we must address the problem ...  and you can do that with supplements and eating giid fresh food.

    Jason..please get a printed copy of your last blood results ..  including the antibody figures .

    post  them on here in their entirety..including the ones in brackets ..l those are important , as those are the  ranges for your Lab !   and show where you are on their range.

    people on here will then be able to tell you exactly how you are and what you could do to make things better.

    in the meantime ..l try very hard to stay focused...  there are green things you could consider making in the interim to calm you.

    Motherwort

    Buglewee

    Lemon Balm  

    i bought these online ..  amazon,,, in liquid tincture form and minted them together 

    in equal proportions...  and out them into a brown glass bottle .. anytime i felt anxiety , which was often , i would take between one and three teaspoons full   and took that regularly as i felt i needed it .   it helped me greatly.

    i hope this has helped a little to let you know you are not alone , there are loads of us and we're all happy to help each other , so any more question, fire ahead !

    best of Luck

    m x 🌹

     

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    • Posted

      Hi madge1979

      Thanks for your reply. Sorry to hear you were so unwell. Certainly sounds like you had a lot worse physical symptoms than what I am experiencing. I seem to be struggling a lot with brain fog, heart palpitations, sore tummy, shakes. Working has become very difficult, near impossible at the moment. I've been trying to push through but have had to have weeks off already. Does it impact everyone's work?

      Thanks for your remedy suggestion. I will look that up and give it a try. Just hoping the medication I was put on works soon and that I start to feel better. 

      In terms of tests:

      TSH: L0.18     mIU/L     (0.40-3.50)

      T4: 14.3            pmol/L   (9.0-19.0)

      T3: 5.0               pmol/L   (2.6-6.0)

      TSH RECEPTOR ANTIBODIES 

      <1      IU/L   negative 

      1-2     IU/L   equivocal

      >2       IU/L   positive 

      Clinical notes: Subclincal hyperthyroidism 

      Any thoughts welcome!

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    • Posted

      Jason ... thanks for reply.

      Can you tell me again please ..

      What is your TSH....

      looked like LO.18...

      Mx🌹

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  • Posted

    By the way ...  YES  !!!

    It certainly impacts on your working day and ... your brain  !

    I was at 10.00 am   .. physically and mentally wrecked !

    I could not have done a days work 

    All I wanted to do was lie down and die ...

    I was miserable and the most excercise I could do was .. walk .. and not much of that either !

    So don't you worry .. I promise you .. if you do as yiur Endocrinologist  suggests ., take Carbimazole .. and then .. take supplements to build up your immune system to normal .. then you're going to be well again !

    You will get a number if other people in here to help you ... Linda 

    And Dan .. they're great and have a huge knowledge of the Thyroid 

    Ask them whatever you're worried about .. and they will give you great advice !

    Mx🌹

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  • Posted

    Hi Jason

    I had similar values to yours and was started on 10 mg of Methimazole at the time of diagnosis.  I was also given 10 mg of Propranolol for the heart symptoms but after I started Methimazole, I didn't need Propranolol much so only took half a 10 mg tablet whenever I had palpitations which was not every day.  However, though this blocked the excessive thyroid hormone, my TSH remained at essentially 0 until I added supplements as Madge did.  I started with adding 3,000 mg of Regular L-Carnitine based on a research study I found that said hyperthyroid patients benefitted a lot from this regimen and with all my supplements, I always got tested for my levels first, so I was tested and found to be deficient in Total carnitine and Free carnitine.  I was tested and found to be low in Vitamin D (as are most hyperthyroid patients) so I added this and my Magnesium was low and I added this also.  I later switched from Regular L-Carnitine to Acetyl-L-Carnitine and this really helped my meds work to raise my TSH level but this one I always caution others is extremely sensitive and you have to get more frequent blood tests and make adjustments as your labs quickly change.  The Motherwort, bugleweed and Melissa that Madge mentioned are natural supplements used on hyperthyroid patients but again if you take those, you may need to adjust your medication dosage quickly downward.  I think if you are having the heart symptoms, Propranolol might also be a good addition to your meds, even at a low dosage.  Please keep us posted on your progress.  Also I did not see your lab level of antibodies, only the ranges.  Did you get tested for your antibodies?

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    • Posted

      Hi Linda187

      Thanks for your thoughts on this I really appreciate it. Interesting to know you had similar levels. Can I ask, how did this thing impact you on the daily? Work wise etc? 

      Interesting you mention L Carnitine, I've done a lot of reading and that seems to be coming up a lot with people who are being treat for thryiod issues so I may mention that to my doctor next time I see him and see what he thinks. 

      In terms of the thyroid antibody test. I am pretty sure I've had this done. Sorry I am not very good at reading these complex report documents. I have a 10 page report from my endocrinologist- it's a shame you can upload documents or screen shots on here as that would be handy. Anyway the test reads;

      THYRIOD ANTIBODIES:

      Anti-thyroglobulin abs (immulite)      <20     (<41)

      Anti-thyroidal peroxidase abs         39       (<60)

      Hopefully this is the one you are after. 

      Thanks! 

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  • Posted

    You can't post to the Board but you can email me privately by clicking on the envelope under my name.  You might also want to Google Dr. Salvatore Benvenga and L-Carnitine to give your doc a copy of the research papers he has published on this topic.

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  • Posted

    I had extremely dry irritated eyes.  I had palpitations until I was given the Propranolol and my thyroid tests were followed frequently for other reasons than hyperthyroidism so I knew fairly soon by how I felt and what my labs were that they were out of range.  So I was lucky to be diagnosed early and didn't walk around like that for months before I knew what I had.

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  • Posted

    All of what you described is what I felt as well. I got bumped up to 50 mg a day of methimazole from my original 30 and I noticed I felt a little better. Perhaps you could ask for an increase if you're having a tough time functioning, but there's no quick 100% better result. It can take months to get back to feeling normal. But after a month of the increased meds I can get through the day. I'm still a little tired, sleep and concentration problems, fast heart (improved) and shakiness, blah, blah, blah, but I'm still happy that I feel better. My endocrinologist also suggested snacking frequently for energy because our matabolism is just going way to hard. That's all I can add to what these two have already said. Hope you start to feel better.

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  • Posted

    I'd be careful re the snacking if you're like many Graves patients , who strangely DO put weight on through  Graves  disease .

     You  could split ... three meals maybe  into six , during the course of the day though ,  which would be better  for your metabolism .

    As for the Carbimazole, I felt  that for me , starting  at 20mg was high ... but I quickly understood the logic and was pleased  that my Endo had done it in this way .. it was ideal for  me and gave me hope as I saw things moving in the right direction .

    Maybe you could discuss doing it this way with your Endo ..

    As it appears to work well for many of us .

    Mx🌹

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    • Posted

      Yeah I find I'm not hungry at all for most of the day although I force myself to have breakfast and lunch. Then I find I am craving lots of food at night after dinner. I have lost about 6kgs over the past week or so. 

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