Fed up!

[SarajSmith]

Hi everyone, I've been hypothyroid for 18 years, currently on 100mcg thyroxine, I have no thyroid gland, as over prescription of thyroxine a few years ago annihilated it. For the past 3 years I have been having neuro issues which I honestly think are down to my hypothyroidism. But, the few blood tests that my GP does TFT T4 & Tsh, all come back "normal", and have done for the last 3 times they've been done. So today at my neuro appointment, my consultant said that all other tests, MRI, bloods etc etc all keep coming back normal too, they honestly don't know what's up with me & even mentioned psychological things!!! I asked him if he could refer me to Endocrinology to dig deeper into my thyroid, he said he would but because all my bloods came back normal he seriously doesn't think endo will do anything, Now I really think I'm imagining all this pain, but how can I be? It's so real? Does anybody please have any advice as I'm at the end of my tether!!! Thank you.

[humanbean]

I have never heard of over-prescription of thyroid hormone destroying a thyroid.

The likely cause of thyroid destruction is having autoimmune hypothyroidism. This involves having antibodies which attack thyroid tissue. Over a long period of time - it could be years, even decades - the thyroid is slowly destroyed.

In order to have a hope of working out what your problems are we really need to see the results of your blood tests. Can you get hold of copies from your GP, including actual numbers and reference ranges, and post them in a new post on here, please. We really need something to go on. You might be under-treated, have poor conversion from T4 to T3, have high levels of antibodies still circulating, have low levels of nutrients ... There are loads of reasons why you might feel awful.

[SarajSmith in reply to humanbean]

Thanks humanbean for reading my post and getting back to me.

It took a couple of years for my thyroid to be eradicated. My thyroid was attached to the back of my tongue & basically looked like a pink Malteser, but after the high dose of thyroxine it went completely.

I think the bloods that they did look within normal range but on digging for information I found that GPS only test for a few, & that even if they come back as normal, it didn't mean everything was in fact normal?!

My blood test results are as follows:

Serum sodium 139 mmol/L

(133-146 mmol/L)

Serum potassium 4.4 mmol/L

(3.5-5.3 mmol/L)

Serum urea level 4.9 mmol/L

(2.5-7.8 mmol/L)

GFR calculated abbreviated MDRD >90 mL/s

Serum creatinine 71 umol/L

(45-84 umol/L)

Serum free T4 level 15 pmol/L

(8-19 pmol/L)

Serum TSH level 0.8 mU/L

(0.1-5 mU/L)

If you can make sense of these then I would love to be able to too!

[humanbean in reply to SarajSmith]

Well, I have to admit - your results are very good!

Most of them are mid-range or close to mid-range, which is good. Your GFR > 90 shows you have very healthy kidneys.

Your Free T4 is in the upper half of the reference range, and your TSH is below 1, which is where people normally feel at their best. You could expect to be told by a doctor that you are "euthyroid" i.e. you have a normal thyroid.

For information on interpreting blood test results this website is very useful :

labtestsonline.org.uk/

Don't despair though - there are still other things which need to be checked. The things you would need to check next are nutrient levels and your Free T3. The nutrients that are particularly important for thyroid health are ferritin, vitamin B12, vitamin D, and folate. You will find it virtually impossible to get a Free T3 test from the NHS with your current TSH and Free T4. The NHS doesn't "believe in" T3, they think it is unnecessary - many doctors have no clue what it actually does. They might do the nutrient testing, but even that is often refused.

For general info on private testing, if you can afford it, see this page :

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

You can get a finger-prick test that covers all the essentials of thyroid testing here :

bluehorizonmedicals.co.uk/T...

If you can arrange phlebotomy and get a blood sample taken from a vein then you might want to consider this test - it's a lot more expensive but includes the same tests as the previous link with the addition of Reverse T3 :

bluehorizonmedicals.co.uk/T...

if the above suggestions don't fit the bill, then the next step would have to be checking your adrenal health. Low or high cortisol makes people feel awful. But that is something to discuss another day.

[SarajSmith in reply to humanbean]

Wow that's so informative, I really appreciate all of that. I think initially I will go to my GP to ask for the other tests then look into private testing too! Would it be ok if, when I have all of the info from the bloods that I message you again?

[humanbean in reply to SarajSmith]

You should write a new post, posting the results you get, including the reference ranges, and asking for feedback.

I don't object to people asking me personally, I just think it isn't safe. I make mistakes just like other people do, and posting publicly is a way of having those mistakes noticed and commented on by others and getting them corrected.

[Lavender-Blue]

Hello

I completely get your situation. The NHS is 'patient 'blameing culture", if they can't find anything then it must be somatic.

Stick to your guns, get referred to an endocrinologist, may be ask for a thyroid absorbtion test and / or an assay interference test.

A nurse today told me about the former today. Out of four hospital lab tests only one is showing normal tsh!!

Get referred, good luck.

M

[SarajSmith in reply to Lavender-Blue]

Hi

I'm honestly under the impression that my neuro consultant won't push it too far as he said "he wouldn't want to second guess the endocrinologists answer" as to if he would dig deeper regarding my symptoms.

What do I do if they won't do anything further? Am I able to get referred for a 2nd opinion? Or is there another health professional I could get in touch with? I'm really at my wits end, & beginning today to think maybe this is all in my head!

[Lavender-Blue in reply to SarajSmith]

You ask to be referred, if your neuro won't refer you go back to your gp, if that particular gp won't refer you see another in your practice.

Lab tests can be unreliable like mine. Endocrinologis's know this.

Resist the transference of going into 'child like state' when with the docs.

Unaware, this is what we do and come out of the office feeling its our fault, i am making it up, nobody believes me! Trust your experience, you are in your body, not them.

[SarajSmith in reply to Lavender-Blue]

I've seen 2 of the more reliable GPs in my practice & asked them both to look further into my thyroid & get the T3 testing, both have said they can't as my T4 is normal & both said it was out of their hands as it is a costly test! That's why seeing my neuro consultant today seemed the next best thing! He genuinely looked at me through tired eyes, like he really didn't know what else to do & that I was clutching at straws for answers! I wish I was more dynamic & been stronger! I was very nervous going in, & felt like a child, so you totally hit the nail with your comment! I fell so flat when I came out after he made the "psychological " statement, like that was what he really thought!!! I wasn't strong enough, I know, but I felt like he had given up before I sat down!

Coming to this site has brought me out of that "feeling sorry for myself" state & now I at least feel like I can really help myself, so thank you for your words & for taking the time to talk to me! It's really really appreciated x

[Lavender-Blue in reply to SarajSmith]

He may have given up but you must keep going! T3 testing isn't usually done via gp, if you get to see an Endo they will usually do it as routine. I had mine done today.

Make yourself an appointment with your gp, if they suggest psychological stuff, tell them No, I know my body! Say something like "i'd like to b3 referred to..... please"

See how you go on, what have you got to lose?

[shaws Administrator]

I'm sorry you are suffering. I am not medically qualified but my viewpoint (after being very unwell on levothyroxine) think the least the doctor can do is add some T3 to levo. You might find that very helpful. If your GP hasn't tested your FT4 and FT3, how on earth does he know that you have sufficient T3 circulating? T4 is inactive. It's job is to convert to T3, the active hormone required in all our billions of receptor cells and if we don't have sufficient we cannot function normally.

[MariLiz]

Neurological symptoms can be caused by low B12, and this is quite common alongside underactive thyroid. It can also be due to low VitD. Have these been checked in your blood tests?

I experienced severe pain until my levels were found to be low. I am now on injections for B12, and supplement VitD&K2.