Feels like no one is listening!

Hi I'm new to the site. Experiencing frustration beyond belief. Half thyroid removed in June after indeterminate biopsy. Also raised antibodies. All the standard thyroid results are within normal range however symptoms as follows. Waking headaches, carpal tunnel both hands-first op on 07/03, constant brain fog-sometimes can't remember names, fatigue, no energy, want to cry for no reason, eyes sensitive to sunlight, osteopenia, borderline anaemia despite good diet and been on multivitamin with iron for years, also treated with extra iron by GP, yesterday after gastroscope diagnosed with gastritis and defuse oesophageal thrush. Also borderline diabetic not formall y diagnosed. Blood sugars on low side 3.7. Last time I saw GP he asked me if I thought my symptoms could by psychosomatic!! Anyone else out there relate to this?

9 Replies

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  • Do you have copies of your latest blood test results? If not, you need to get hold of them. You need to know exactly what has been tested, and what the results were. And, if you live in the UK, it is your legal right to have a copy. Just being in the so-called 'normal' range, is not good enough. It's not the same as optimal. It sounds like you are very hypo.

    Doctors always want to make out we're barmy. It's so much easier for them. They can just prescribe an anti D and send us on our way. Job done. Treating a hypo is far more difficult, requires some thinking about. But, don't be fobbed off.

    You won't get any iron out of a multi-vit - or not very much, anyway. There's never enough of anything to treat a true deficiency, and many of the ingredients are poor quality, no matter how much you pay for it. Plus a lot of the ingredients bind together, so become unavailable to the body. Just a waste of money, really. What you need to do it get your vit d, vit B12, folate tested, and ferritin retested, to see where they are. They all need to be optimal, not just in-range.

  • Thank you it's a relief to hear from others having similar problems. I am going on line now to see if I can access blood results, if not I will request a print out and post the results. Seeing the endocrine bods on 28th and will speak to them re other tests you mentioned. When I saw them in September they again were only interested in numbers, but I intend to be heard this time.

  • Good for you! :)

  • After your advice re checking on line mess records I have discovered things I was unaware of as I was never informed. I was curious re the symptoms I have been experiencing for years so started looking from the back dates forward and found this: apparently GP had included TSH test in October 2000; results 1.11; June 2002; 0.58 normal range 0.34-5.6. Have experienced palpitations and fluttering in the chest for years; have had approx 5-6 ECGs to date, all of which were reported as normal by GP, one being in November 2002. There was then a letter dated December 2002 from the cardiologist reporting that all the bloods taken were normal except the thyroid function test, which was as follows. TSH 0.06 free T4 18.38. The cardiologist requested my GP repeated the bloods to include T3 as I could be thyrotoxic and would warrant appropriate management!!! I wasn't even told!!

    Gob smacked or what! As I understand It thyroid growths develop at approx 1ml per year, very slowly. My growth which was indeterminate in fine needle biopsy was 1.6cm as of May 2016 when it was removed. Maths tell me that if I had been treated I may well have avoided surgery and now all symptoms I'm experiencing.

    I'm due to have bilateral carpal tunnel surgery on 07/03 and 21/03, which by the way when I first went with symptoms approx 2 years ago I was told by my GP I must be sleeping on my hands.

    My last thyroid result was October 2016 TSH 3.52, T4 12.5. Serum iron low at 11.4. Serum ferritin 33.7 so also on low side. Serum B12 415. Serum folate 20. Transferrin saturation 17% was low.

    Feel angry now but at least I know why this has been going on. Any advice/ thoughts would be appreciated.

    Reply

  • "As I understand It thyroid growths develop at approx 1ml per year, very slowly. My growth which was indeterminate in fine needle biopsy was 1.6cm as of May 2016 when it was removed. Maths tell me that if I had been treated I may well have avoided surgery and now all symptoms I'm experiencing."

    I'm sorry, but what sort of treatment do you think you should have started? As far as I know, there is no treatment for nodules (I think you mean nodules). You weren't hypo, according to your bloods, and as far as you know, you weren't hyper. So, I don't see what treatment you could have started.

  • As greygoose says, ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is a finger prick test you do at home, post back and they email results to you couple of days later. Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    As you have high antibodies then you may find adopting 100% gluten free diet can really help reduce symptoms, and may lower antibodies slowly over time too.

    Best advice is to read as much as you can. Vitamin and minerals levels are very important. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune thyroid.

    thyroidpharmacist.com

    chriskresser.com/the-gluten...

    amymyersmd.com

  • Thank you for the advice. I have decided that if I'm not listened to when I see the endocrine bods again I will get the bloods done myself. Thank you for the links that's really helpful.

  • After advice re checking on line mess records I have discovered things I was unaware of as I was never informed. I was curious re the symptoms I have been experiencing for years so started looking from the back dates forward and found this: apparently GP had included TSH test in October 2000; results 1.11; June 2002; 0.58 normal range 0.34-5.6. Have experienced palpitations and fluttering in the chest for years; have had approx 5-6 ECGs to date, all of which were reported as normal by GP, one being in November 2002. There was then a letter dated December 2002 from the cardiologist reporting that all the bloods taken were normal except the thyroid function test, which was as follows. TSH 0.06 free T4 18.38. The cardiologist requested my GP repeated the bloods to include T3 as I could be thyrotoxic and would warrant appropriate management!!! I wasn't even told!!

    Gob smacked or what! As I understand It thyroid growths develop at approx 1ml per year, very slowly. My growth which was indeterminate in fine needle biopsy was 1.6cm. Maths tell me that if I had been treated I may well have avoided surgery and now all symptoms I'm experiencing.

    I'm due to have bilateral carpal tunnel surgery on 07/03 and 21/03, which by the way when I first went with symptoms approx 2 years ago I was told by my GP I must be sleeping on my hands.

    My last thyroid result was TSH 3.52, T4 12.5. Serum iron low at 11.4. Serum ferritin 33.7 so also on low side. Serum B12 415. Serum folate 20. Transferrin saturation 17%.

    Feel angry now but at least I know why this has been going on. Any advice/ thoughts would be appreciated.

  • Oops! Should say checked online medical records!

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