What now?

[Sick-and-Tired]

Hi everyone,

I've posted on here a few times. I'm 30 years old and have been feeling ill since my late teens/early 20s. This was brushed off as being all in my head by various GPs, but with the help of this forum I ordered some tests a couple of years ago and discovered high thyroid antibodies.

Since then, I managed to get myself referred to an endo who completely dismissed the idea that there was anything wrong with my thyroid and discharged me.

I have still at this point never managed to get a professional to say that I have autoimmune thyroiditis and they all seem to think it's quite funny that I've latched on to the idea.

A few months ago a friend of mine who has unexplained chronic fatigue suggested I see a private endo who she had seen. Even though there was nothing off about her thyroid results he had been very interested in her thyroid function, so the chances were he would take my thyroid results seriously.

So I paid a small fortune but I was surprised to find he also didn't think my thyroid was causing my symptoms (although he did admit that because of my antibodies my thyroid would one day cause me to become ill). He suggested that I have CFS and should take part in graded exercise.

However, he did agree that to put my mind at rest and rule out my thyroid being the problem that he would write to my GP and suggest a trial of Levothyroxine - hallelujah!

Fortunately I changed GPs at the same time (experience told me my last one would rip the letter up!) And this one agreed to let me give it a go.

So I have been on 50mg of levo since march. She said I should come back for blood tests in may which I did and my TSH is lower now at 2.1 (0.35-5.0) and my doctor's reaction was basically like "that's fine then, you can stay on them" with no suggestion of further testing and no questions about whether I felt any better.

But the thing is... I don't feel better. I'm terrified that maybe all the doctors have been right all along, it's not my thyroid that's making me ill, it's just that I've discovered earlier than most that I'm a ticking time bomb waiting to become ill from hashimotos.

What should I be doing from here? I'm already exploring diet and looking at cutting out all potentially inflammatory foods.

I'm just utterly exhausted. My confidence is at an all-time low and my optimism at trialling the levo is starting to fade.

How do I know if I'm on the right dose of levo? Presumably I should be feeling better by now? (Although my skin is clear for the first time in my adult life)

Do you think something else could be causing it? I've had my active B12 tested before and even people on this forum said it was a respectable number.

For reference, my TSH tests (they refuse to do T3 and t4 for me these days, although I have had them in the past and they have been well within range) are

(Range for all of below is 0.35-5.0)

April 2016 - 3.5

Nov 2016 - 3

March 2017 - 2.8

Aug 2017 - 5.1

Oct 2017 - 5 .7

Feb 2018 - 2.4 (I'm not sure what caused this dip, it's before I went on levo. I did the test first thing in the morning when fasting)

May 2018 - 2.1 (my first test after going on levo).

They don't do any other tests for me, so unfortunately TSH is all I have to go on.

Any thoughts on why I don't feel any better would be really appreciated.

Thank you.

[greygoose]

Well, you've been hypo all along. It's just that doctors on the NHS are sadists, and like you to suffer until your TSH reaches 10. And, now you're under-medicated. The aim of thyroid hormone replacement is to reduce your TSH to 1 or under. But, given the attitude of your doctor, I don't hold out much chance of an increase - unless you badger her until she gives in just to get rid of you! Or, find a more educated doctor.

[Sick-and-Tired in reply to greygoose]

Thank you so much for your advice. It's such a relief to hear that I'm not necessarily back to stage one in terms of working out why I feel so ill.

I'm not sure how to demand a higher dose - especially considering I've been being told that my TSH was fine at 5.7 - but I can't just leave it as it is.

Thank you again so much.

[SlowDragon Administrator in reply to Sick-and-Tired]

Suggest you get full vitamin and thyroid test via Medichecks or Blue Horizon

You need TSH, TT4, FT4., FT3 and both antibodies

Plus vitamin D, folate, ferritin and B12

Test as early as possible in morning and fasting and don’t take any Levo in 24 hours prior to test

Getting vitamins optimal is essential.

Come back with results on a new post

[Sick-and-Tired in reply to SlowDragon]

I saw a different doctor today for an emergency appointment because of a fluttering heart and sudden low blood pressure. She said she wanted to check my iron and TSH so I asked for everything you have suggested to be done at the same time and she agreed! (I have had dealings with this doctor before and she often seems to forget to tick half the tests so we'll see what I end up with!)

Thanks again for your help and I will put up a new post with the results when I have them.

[greygoose in reply to Sick-and-Tired]

No, it's a problem, isn't it. They know so little and think they know it all! But, you could always buy your own...