Hope my story helps someone

Hi, my name is Vin and I would like to share my story with you as it may help one of you maybe progress in your fight against your thyroid.

From a young age of 11 years old I started to get foggy head, this was what I could only be describe as the feeling of your brain being asleep while you are actually awake, this would occur randomly through out my school years what with feeling tired and unable to concentrate on the class.

From the age of sixteen and working this still was the case, random tiredness and concentration with what I can only describe as mad half hours where I felt like a rocket and would joke about making people laugh.

My skin was always dry on my shins, my eyes were soar and by the time I was 17 I was 6'1" and twelve stone I thought it was time to join a gym and put on some weight, I trained for two years really hard and gained 3 stone still suffering the random symptoms of my yet undiagnosed thyroid problem.

So one morning I woke feeling sick but no t vomiting, it felt like a finger had been put on my throat by someone and it was constant, there was a taste of violent off milk in my mouth that I could not get rid.

That feeling lasted 3 months and all the Dr could say was it was acid, over the 3 months I was down to being able to eat just a roll a day, that 3 stone I had gained was gone and not once did I vomit but had the intense feeling I wanted to, this disappeared as quick as it come but would do this to me over the coming years for random amount of times along with my previous symptoms,

Come my mid twenties I started to notice another problem becoming more dominant, this was my brain struggling to figure out how to do things I could do no problem, sometimes a day or a week or two then go,

So going to the doctors and telling of my symptoms I get told I'm bored of my job and to find another.

What I don't realise is this is ruining my life ruining relationships, you don't have the energy that normal non affected people have, I struggled with my condition being mis-diagnosed right up to the point where at 36 years of age and a few failed relationships I went to the doctor and told him I was so close to not wanting to live as knowing I was not depressed but I could not struggle with these symptoms any more, for the first time he took me seriously and I had a thyroid blood test, the first came back a little high but the second concluded my thyroid was over active and relief was felt finally or so I though.

For two years I was on carbizamole but it did not work,I was struggling with

Sore whites of my eyes

Itching skin

Fatigue

Putting on weight

Tiredness

White deposits in my nails

Paranoia

Anxiousness

Forgetful

Could not recognise people I knew including my ex girlfriend shopping

Joint aches

Low sex drive

Headaches

Constipation

Some thing had to be done so my thyroid was removed with radiation iodine,

I felt less confused once it was removed but 2 months later I fell over and my wrist shattered, for being undiagnosed for so long I had suffered osteoporosis and this was in 2007.

Suffering from constipation and still feeling tired with my alt levels being high 2015 saw me diagnosed with coeliac desease as well as a 3 mm tumour on my pituirity gland which is making my prolactin 220 times higher than what it should be and my testosterone is on the lower side, I have been put on a drug to lower the prolactin but I still feel tired and lack the life lustre that normal people take for granted,

So if you have a thyroid problem get your bone density checked, if your constipated or your stools are not normal go and see if you have coeliac disease ,

If you liver alts are high and you do not drink or smoke it could be coeliac disease.

Hopefully 2016 will be better.

Cheers Vin

15 Replies

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  • What a rough time you have had if only doctors would listen to patients it's so frustrating when you know within yourself things are not right I hope 2016 is a good year for you all the best

    Best regards

  • Sadly your story is all too common - but it is good that you are able to share it with others as it will surely be very helpful. Hope you continue to improve and find the quality of life you deserve.

    Hope you are obtaining all copies of your results with ranges and supplementing well. How are they dealing with the osteoporosis ? Maybe people here can give your results the once over in case there can be some improvements your GP has not spotted :-)

  • Hello Vin,

    Welcome to our forum and sorry to hear of all your health problems.

    A long term undiagnoised thyroid hormone imbalance can cause a whole host of devastating conditions and many members have suffered and are extremely supportive.

    Post any questions and also any recent blood test results complete with ranges ( numbers in brackets) for members to comment.

    I too have an oesteopenic lower spine (although luckily no pain).

    Thank you for posting your story.

    Flower

  • What a tortuous journey you been on, Vin.

    It shows the complexity of the systems of the human body and their interaction, and how conventional medicine often only scratches the surface, especially since doctors are quick to fob you off with anti-depressants or "its all in your head" diagnoses.

    You've done well to get this far, and I hope you continue to improve, and that we see more uplifting posts from you in the months to come!

    Good luck

    Geoff.

  • Thanks for sharing and I hope your health improves. It is so frustrating that doctors immediately assume depression rather than investigating all over health and well being. 4 years ago my doctor wanted to discuss depression and I refused as I said these are physical symptoms please treat those first. 6m ago with a new doctor I eventually found my root cause was Coeliac and sadly I have osteopenia which possibly could have been avoided if she had listened to me years ago.

    Stay strong and keep spreading the message that we must not give up.

    Happy New Year

  • What a journey Vin,

    dreadful ... you're a very brave man... and I hope to God , now that you've been diagnosed .. you're on the way to a new and better life .. with your good health restored.

    Your story will indeed be of great interest and I'm sure , help to people on this site .

    Tell folks on here about your progress and they will help you get there even quicker,

    there are many supplements available , which act like magic .. that will encourage

    your body to work better and more efficiently.. take it all in and make this site a very

    enjoyable pastime , you will be amazed at the knowledge you will glean

    from here .... and you will be blown away by the number of people , who through

    their own illness have learned more than most medical Doctors.

    Stay with us .. and get well Vin .

    Happy New Healthy Year 🌹

  • Dear Vin

    Your story is very sad and you are indeed very courageous. I hope that from now on everything gets better and better for you.

  • Hi Vince

    Welcome to this forum. I'm Sorry to read what a tough and horrible time you have had. Glad you are now diagnosed. Keep string with the doctors. You know your body and symptons.

    Hope everything gets better for you

  • hi - it's shocking that you have been suffering like this for so many years. Your story is almost identical to mine ie brain fog - I struggled so much to do my job that I had done for years as I looked at documents and my brain could not process information properly. I really struggled. I also was over active for quite a few years before being diagnosed, had the RAI, nodules etc etc. However, the difference for me is that at least I started having these symptoms in my late 50's and therefore up until then I had led a very active and normal life with great energy levels etc. I even held down 3 jobs at one time. I had the RAI four years ago and am now becoming underactive and energy levels, constipation, dry skin etc are all poor. However, this forum has been a great help in advising about supplements, natural thyroid treatments etc so hopefully I will get to a place where I feel "normal again" and hopefully you will too. It's all about research and knowing your own body and although sometimes when we are so fatigued we just feel like giving up, it's good to know there are others out there struggling just like us. It's shocking that you have basically had to suffer throughout all your youth without any help from medical professionals. hope your health improves soon.

  • Hi... Given cabimazole but it did not work? From the symptoms you describe, i would say it worked a little too well.. Sounds like you were given block and replace but the doc forgot the replace part of the treatment.

    So now you have no working thyroid and presumably you are being given medication to replace the t4, t3 and calcitonin which your own thyroid would have made? The calcitonin is very important to you because it stops the calcium leeching out of the bones......... Which medication are you taking and how much?

    What are your thyroid hormone levels looking like? Hypothyroidism can also be one of the causes of high prolactin levels as well as the tumor.

    You sound like have been messed about quite a lot.... Now is the time to read up and work out if you are being optimally treated. ( it doesnt sound like you are). A good place to start is with "your thyroid and how to keep it healthy" Written by dr barry peatfield. Available on amazon.

    The failure to remember the faces of people you know, could be prosopagnosia.... I dont think its related to hypothyroidism.... Its a seperate issue. I am unable to recognise people i know, but now i know why, its fairly easy to deal with..... And can be quite entertaining..... My husband steps in pretty quick when he sees megetting people muddled up..... Check out the online tests.... Will add the link as soon as i find it.

    G

    Edited..... Heres the link. faceblind.org/facetests/

  • I would take T3 either the carcadian rhythm method or sustained release (Wilsons syndrome).

    Read as much as you can on the net also find a friend that is interested in your treatment so they can help with your research and treatment as when you are sick you carn't think/ comprehend well.

    Listening to doctors will keep you sick they will also be so cautious with T3 doses that you will never feel better, if you cannot find a doctor order it online it will be allot cheaper.

    I personally have seen many doctors, endocrinologist and specialist they don't know how to cure you they only know how to treat symptoms with drugs that damage your health. Honestly it's not hard to know more than 95% of doctors and specialist.

    Your cells aren't getting T3 so you will have no energy and possibly causing your other problems ie it is possible you pituitary tumour will reduce if your body has the energy to heal also being healthy is strongly related to how you feel.

    Kind regards Angus1

  • Dear Vin

    I know how u feel because I've been through almost the same too. Have suffered from Graves, ended up having my thyroid removed. So far, the only thing I've "gained" is...extra weight! But Vin life is good, we have to keep on trying. Besides, you've proved you are a fighter!

  • Wow! What a story. Testing for celiac is very cheap now and on line tests are available, and one of the lessons from your story is - anyone with gut issues or even just fatigue would be well advised to check for it.

    And remember, if the result comes back negative, you could still develop it ten years down the line. It's not a once for all test.

    Thank you so much for posting.

  • So sorry to hear what a terrible time you've been through Vin and for so long I hope you continue to recover. Doctor's get away with so much lack of care towards anyone who has thyroid problems, and in your case negligence. If I were you I would give serious thought to making a strong complaint against them starting as you should with a formal complaint to the practice manager. If nothing else it will stop them ignoring you in the future. All the best for a happy new year.

  • Hi Vin, your symptoms described above are indicative of under active thyroid and there is a possibility that the doctors got the diagnosis of over active thyroid wrong.

    One possibility is reduced sensitivity to thyroid hormone, also known as thyroid hormone resistance. This is genetic so if you have other family members with thyroid/CFS/ME etc issues that would support this possibility.

    With this condition the body needs very high levels of thyroid hormones and if the doctor relies exclusively on blood tests and ignores the symptoms they will misdiagnose this as over active thyroid.

    This also fits with the pituitary tumour - when the body needs large amounts of thyroid hormones the pituitary has to work extra hard in producing TSH and this causes the pituitary to grow. The way to shrink the pituitary is to take sufficient T3 to completely suppress the production of TSH by the pituitary. The T3 should also help the hypo symptoms.

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