Recurring symptoms

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Hi, I am new to this site but would be interested to see if anyone else experiences similar symptoms to mine! 

I was diagnosed 15 months ago and was put on Cabrimazole for a year. I have now been off the medication for 3 months and am seeing the endocrinologist tomorrow.

My blood results say I am now within the "normal range" but my journey here has been one that the endo says can't happer!! Every 2 weeks I have episodes lasting 4 days of having ALL the symptoms as they first presented-aches, fidgeting, shaking hands, sweats, nightmares and inability to sleep for more than  4 hours despite desperate tiredness, pounding heart, etc etc. The rest of the 2 weeks I feel well!!

It is so debilitating and depressing and rather annoying not to be believed from someone who sees patients with hyperthyroidism daily. 

Any responses gratefully received!! 

 

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  • Posted

    Hello Hilary 

    I am only recently diagnoised but I have read a bit about the disease and thyroid. You may well know everything I am about to say. In the book your thyroid and how t jeep it health. Dr durrant talks about taking you base temperature and pulse first thing in the morning normal pulse between 65- 75 temp around 37oC. Above or below indicate hyper or hypo. He suggests keeping a track of it along with symptoms. Then go to dr and show them your results. If still no joy I would go to see a functional medical Dr but I would really recommend that now actually. I would also reccomended the book. The Immune System Recovery Plan. How you get it sorted. 

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    • Posted

      Hi brightombreeze, I have ordered the book, and, having had a quick look at the contents on amazon, have bought the supplements it suggests. The bit I read on line made a lot of sense, so I'm looking forward to receiving it. Thank you so much for your suggestions!! ;-)

       

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  • Posted

    Hi Hilary

    I've had Graves since 2007 & am still struggling with it! I believe most doctors & endocrinologists don't really care about getting to the bottom of 'why' you are ill & they will only ever treat your symptoms.  You are just a number & they want to get you off their books as fast as they can, its rather like being on a conveyor belt !

    My advice to anyone is to do as much research as possible so that you gain a full understanding of exactly what is going on in your body, it will empower you when you talk to the endos.  

    I am trying to go down an alternative route, have not seen great results so far but I still believe this is the right thing to do, I have very little faith in the medical profession now given my experiences.

    Remember it is not your thyroid that is not functioning properly it is your immune system so until you find a way to calm the immune system then I believe you may continue to have issues perhaps with other AI conditions, they say that once you get one AI disease it is not uncommon to get another.  This happened to me & I now have rheumatoid arthritis, I'm not saying this is going to happen to you & I certainly would not wish it on anyone.

    I'm still on my journey, it looks like it will be a long road ahead too but when you consider all the years of just eating/drinking whatever you like and not giving much thought to nutrition then it is not a surprise that things have not improved quickly.

    I have recently been made aware of a little known drug Low Dose Naltrexone which appears to be being used very successfully to treat all AI conditions as it calms the immune system down very quickly.  I have a friend in USA who has RA & who has only been using this for a week and she has seen massive improvement already, all swelling has gone & she has been able to go for walks which previously was not possible.  So I am researching this currently, whilst is does not fit with my natural treatment I believe it may help in the short term to calm everything down.

    Good luck in your journey & keep us posted with your progress.

    Ann

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    • Posted

      Hi Ann, Thank you for your reply. It was in the back of my mind that it's not just the thyroid I should be concerned about, you make such sense. I have ordered a book about treating the auto immune system and am going to explore that root thoroughly, I've already bought some of the supplements that are suggested and I feel far more positive now, Thank you!! biggrin
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  • Posted

    PS I recommend watching the following films if you can, they are on Netflix for free if you have access :-

    - Food Matters

    - Hungry for Change

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    • Posted

      My son has Netfklix, so I may have to invade his space to watch the films, or perhaps I'll just ask nicely!!! x
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  • Posted

    Hi Hilary.  I haven't heard about your pattern in particular.  However, my disease really didn't heal on just medications.  I read an article about the use of L-Carnitine in patients with hyperthyroidism and that's what turned mine around.  Particularly for me, Acetyl-L-Carnitine made the difference.  That is because this amino acid normally found in the body gets depleted in the muscles of hyperthyroid patients.  You can get this in Health food stores.  If they don't have it, they usually will order it for you.  Also avoid foods with aspartame in them. 
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    • Posted

      Hi linda187, I too have heard about Acetyl-L-Carnitine, and am off to the health food shops today to buy some. I feel more empowered now that I can do something for myself rather than just rely on the Endo's route. Thank you!!!
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  • Posted

    Hi everyone.  This is a reply for acd mainly.  I recently researched LDN myself, as I have Graves, RA, Sjogrens Syndrome and SLE.  I personally wouldn't touch it.  Although the information sheet says it can be used to treat Graves there is a waiver that you have to sign (if you use LDN) that says you are accepting responsibility if the thyroid goes over active.  How can they say this when they have claimed it can be used to treat Graves.  I wrote to them and asked them to explain and got no reply.  Secondly if your GP will not prescribe it you can have a consultation with a LDN Doctor (at a price) who will prescribe it.  If a prescription can be bought like that I think there is a way to go before I would consider it safe.  I certainly won't be trying it. 'I'm not saying it isn't effective for some conditions but I would tread very careful with thyroid issues.   I would recommend Simba tablets from the Little Herbal Company that are immune support and I can honestly say changed my life when I was first diagnosed with auto immune issues in 2000.  And try L cartinite as Linda suggests.  She is very well informed and I've started on it myself.  Remember we are all different and although I've had some really bad symptoms in the past, including severe palpitations and weight loss I am lucky enough to respond well to carbimazole and feel fine. 
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    • Posted

      Thanks for the suggestion of Simba tablets.  I will look into that.  I read up on low dose Naltrexone and was very excited to try it.  My GP wrote the Rx.  However, it quickly became clear that it affected my mood very adversely and I had to stop it so all the hype about it was not good in my case.  Don't know if it was reacting to any other meds I was on. 
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    • Posted

      Thank you for that information. It's all a bit of a minefield, but I shall do some more research on both and go from there! I appreciate your comments!
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