Thank YOU All.

[Inana]

I'm fairly new here. I have only been here for a month and I have learnt so much from you. You fill me with immense gratitude.

I don't know where I'd be without this forum. I truly don't. I felt so alone until I came across this site. I hope I can come up with some solution by reading posts here, and taking in information I receive, and using it to improve my lot.

I plan to self medicate if all I get told is that my tests results are "normal". I will need the guidance of everyone here even more than ever when I put myself on trial treatment because it is a very frightening thing to do alone. I come here every other day and read through posts, and it truly gives me the will to fight another day. You give me hope.

Thank you all for being such a supportive energy. This is a wonderful, useful and educational community.

P.S. I am going to the endocrinologist on the 23rd of February 2017. I went to another doctor who told me the same thing, that my tests results are "normal". So, I dread hearing that my tests are normal again by the endocrinologist. But, even as I dread that, filled with despair, I know that it wouldn't be the end. I know this because the people on Thyroid UK have found solutions to my problems and I will take a page from your books, so to speak.

Anyway, I hope you all have a lovely day. My next post should be after the endocrinologist's appointment. Because my tests are normal, this second doctors says it has to be Cushing's Syndrome or early menopause. ***sigh*** We'll see.

[shaws]

Inana

The problem for us nowadays, is that doctors are unaware of any clinical symptoms and they will diagnose a symptom as something 'apart' from a dysfunction of the thyroid gland. It was much easier in the past when we were diagnosed upon clinical symptoms alone, and given a trial of thyroid hormone replacements and if we improved we were 'hypothyroid'.

Doctors are also unaware of the damage which can be caused by misdiagnosis as they are now taught that only a blood test is the most accurate whilst ignoring our suffering.

I shall give a link (now archived so any links within may not work but you can learn a lot if you can access most of the topics at top of the page):

web.archive.org/web/2010103...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

If doctor hasn't checked for thyroid antibodies, ask for these too and always get a blood test at the very earliest (fasting) as TSH is highest then and drops throughout the day.

[Maryh1 in reply to shaws]

Thanks for this post, it really helps. I'm afraid I have about 75% of the symptoms listed. I've been hypothyroid for so long, I forget some of my issues are thyroid connected. Most days I feel pretty good, and just go with the flow.

Good luck Inana, better days are coming!

[shaws in reply to Maryh1]

Maryh1,

Make a new appointment with your GP and ask him to run a whole range of tests and that is TSH, T4, T3, Free T3 and Free T4, B12, Vit D, iron, ferritin and folate (B12 and Vit D are pro-hormones). You can say you are a now member of Healthunlocked Thyroiduk.org.uk (TUK are NHS Choices for advice on dysfunctions of the thyroid gland ) and want relief from your symptoms. If he refuses and you can afford it we have recommended labs which will do these with you. Most doctors are content when our TSH is anywhere in the range when it should be around 1 or lower and some need it suppressed. Rarely are Free T4 and Free T3 tested. T3 (liothyronine) is the only active thyroid hormone required in our receptor cells and T4 (levothyroxine) is inactive and its job is to convert to T3 so we have to have sufficient.

Make the earliest appointment, fasting, and allow 24 hours gap between last dose of levo and the test and take afterwards.

[Maryh1 in reply to shaws]

I just did, and am waiting for results. Afraid I only allowed about 10 hours since last cytomel pill. I guess I better do it again.

[shaws in reply to Maryh1]

That might be short enough as it is absorbed more quickly than levo.

[Russellb73]

Good luck with your endo !! And don't expect miracles from them, you have to push and push !! Continue to explain that maybe in there normal range but you suffering like this is not "normal" and the continued suffering is causing you additional physical and mental problems !

Your asking for help and then perhaps tell him if they are not willing to explore further you will have no option but then to self medicate !!

They won't want you doing that but insist if there is no support from them you cannot go on the way you are !!

I'm having a continual battle with an endo and Its causing me additional stress which my body struggles to cope with now !! And I know I'm not the only one it seems so unfair we cannot get the support we need.

Hang in there and other best advice I was given was you know your own body you know when things are not right so don't accept there attempts to push you aside.

I'm still contemplating putting in a formal complaint but I have yet more tests in 2 weeks so I'll make that decision thereafter !!

[StarFlower2]

Inana

Your story sounds so like mine! I found this forum and my life changed from the advice I received here. I read and learnt how to read my own blood tests. I started to understand the difference in normal and optimal. I was eventually brave enough to self medicate and also to tell my GP and endo why I was taking my life into my own hands. It's been an up hill struggle but I'm getting there and feeling so much better these days.

Good luck

[SlowDragon Administrator]

On you first post test results, could not see any tests for folate or for thyroid antibodies.

Have you been tested for coeliac or tried gluten free diet?

ncbi.nlm.nih.gov/pubmed/191...

chriskresser.com/4-little-k...

You might need to consider seeing a gastroenterologist too

[Inana in reply to SlowDragon]

Hi,

There was no folate or thyroid antibodies done. When I asked for thyroid antibodies test to be done, both doctors refused, saying that to test that is to identify which type of thyroid problem I have, so they won't test it. I asked twice and both times they refused. So, I will try again with the endocrinologist on the 23rd, and ask for these tests to be done, for my peace of mind.

As for folate, I assume it is low so I started supplementing it this week, because I had to order the folate drops from England (BioCare) and it took a while to get here.

I also bought myself some L-Glutamine and 5-HTP to help my gut because I am also not digesting food well, especially proteins (meat).

As for a gluten free diet, I have been gluten free since 2010. I occasionally eat a cheesecake slice (which has some flour), once every three months but generally, I stay away from Gluten and Lactose, because I am at a loss as to what is causing my tummy to be unhappy.

I will definitely see a gastroenterologist when I am done with these tests with the endocrinologist so I do tests systematically, one area of focus at a time.

Thank you.

[shaws in reply to Inana]

Stomach problems are not unusual with hypothyroidism but unfortunately symptoms of 'high or low' acid are so similar that doctors prescribe antacids when we are most probably low acid. This is a link which might be helpful. Many members who've a 'acid' problem take a good Apple Cider Vinegar in water whilst taking their meals or Betaine/pepsin tablets. Both provide acid to digest our food.

scdlifestyle.com/2012/06/hy...

[Katepots]

Giid luck Inana.The endo should check your antibodies so don't forget to ask.