Going back to the beginning

[Elizabean]

Hi All,

I have decided to start from the beginning again in looking at my thyroid function. I was originally one of Dr Peatfield's patients and have been taking T3 daily for last 10 years. Dr Peatfield diagnosed me with hypothyroidism 10 years ago, but I never got a diagnosis on the NHS as my TSH levels didn't reach their magic number.

In addition to the hypothyroidism I have also had CFS/ME for 20 years.

For the last two years I have been bed bound and am struggling to function on even a basic level. As I result I haven't been very proactive in looking at my thyroid function for quite a long time. Recently I have decided that I need to take a closer and more proactive role in looking at what is going on with my thyroid function, so I am in the middle of getting testing done.

even though I was never officially diagnosed with hypothyroidism on the NHS, I did manage to get referred to an NHS consultant endo who for the past 6 years or so has agreed to monitor my bloods annually. In practice she will only test TSH, FT4 and FT3. I was due to get my annual bloods done and I wrote to my consultant endo asking if, in addition to TSH, FT4, FT3, she would agree to also test thyroglobulin antibodies, thyroid peroxidase antibodies, ferritin, vitamin D, vitamin B12, serum folate and C-reactive protein. The only test she would agree to run (in addition to the TSH, FT4 and FT3) was TPO antibodies. She refused to test for thyroglobulin antibodies as she said it was not relevant to me.

Therefore, this morning (at 8.45am, so following the advice on here) I had blood tests for TSH, FT4, FT3 and TPO antibodies. I am just about to speak to my GP and I think I will be able to persuade her to agree to blood tests for ferritin, folate, vitamin D and vitamin B12. This will mean that the only blood test that I won't have had is thyroglobulin antibodies.

My question is: given I will have all of the other results, how crucial is the test for thyroglobulin antibodies? Is it a crucial missing piece or will the other results be enough for me to ask for your help on here with interpreting the results that I will have?

Many thanks in advance. I really appreciate your help.

[SeasideSusie Remembering]

Elizabean

If TPO antibodies come back positive that confirms autoimmune thyroid disease (Hashimoto's) and testing TG won't be necessary. If TPO antibodies come back negative it doesn't rule out Hashimoto's because you can have negative TPO but positive Tg antibodies which can suggest Hashi's. It's also possible to have Hashi's without raised antibodies.

So for now just post what results you get, including the reference ranges, and we can take it from there.

[Elizabean in reply to SeasideSusie]

Many thanks Seaside Susie. I appreciate your help.

[Elizabean in reply to SeasideSusie]

Hi Seaside Susie, this is not something I know anything about, so please forgive this probably very basic question! But, in terms of how you treat it, what difference does it make if it is Hashimoto's or just 'straight' hypothyroidism? So, for example, if two people both had the exact same blood result figures for TSH, FT4 and FT3 which clearly showed hypothyroidism, but through antibody testing of TPO and TG of them both showed that only one of them had Hashimoto's, would their treatment need to be different in practice? In other words, does the Hashimoto's element of it dictate a different treatment or treatment strategy is needed?

I hope my question makes sense!

Many thanks in advance.

[SeasideSusie Remembering in reply to Elizabean]

Elizabean

No difference at all in treatment. There is no treatment for Hashi's, it's the resulting hypothyroidism that is treated. So whatever the cause of hypothyroidism, the treatment is always the same, ie thyroid hormone replacement.

[greygoose]

Is your endo a diabetes specialist? Because I fail to see why Tg antibodies wouldn't be 'relevant' to you if TPO antibodies are. Either one could be high, indicating Hashi's - aka Autoimmune Thyroiditis. They don't both have to be high. But, the NHS won't test TgAB if TPOab are within range.

So, your other results might give you a diagnosis of Hashi's, if TPOab happen to be high on that particular day. But, if they are in-range, it doesn't prove you don't have it - if you see what I mean. In which case, TgAB might be the missing link. The other results, on a one-off test, won't tell you if you have Hashi's or not. They will tell you if you are hypo. But, you would have to have them tested often and regularly, over a long period, to see if there's a trend that points towards Hashi's.

[Elizabean in reply to greygoose]

Hi Greygoose,

The reasoning given by my endo consultant in her email as to why she wouldn't agree to test TgAB was the following:

"We only use anti thyroglobulin antibodies / thyroglobulin to assess re growth of thyroid tissue for patients who have had a total thyroidectomy and radio iodine for thyroid cancer and so that test is not relevant to you. "

I am too unwell to argue!

I have just spoken to my GP and she agreed to order tests for the ferreting, folate, vitamin C and vitamin B12, as well as C-reactive protein and full blood count. I asked her if she would test TgAB and she was literally unable to - the computer system would not allow her to.

So, for now, I will have all of the other results but no TgAB result.

As Seaside Susie says, I will post my results when I get them

Many thanks for your help. I really appreciate it.

[greygoose in reply to Elizabean]

Well, it's true that that is one use for the TgAB test, but she's missing a trick there, and she doesn't know enough about thyroid to realise it.

However, arguing wouldn't get you anywhere, anyway. That is NHS policy. But, like so many other of their policies, it's wrong. Which is why so many people get private testing done.

[Marymary7]

I had the same problem. No official Hashimoto diagnosis because NHS only tested TPOab. Private bloods saw sky high antibodies in TGab. It’s a ridiculous state of affairs. Good luck and keep on trying to get well😄