Can anyone shed any light please ...???

[SMXX]

Hi lovely people,

I’ve been referred to you due to my blood results and possible thyroid problem...???

Brief background without boring you too much ...

Had blood test(below) and discovered I’m B12 and folate deficient. Symptoms are endless really experiencing neurological symptoms and really struggling day to day if I’m honest.

I’ve had 6 lots of loading doses and awaiting endoscopy on Saturday. No improvement from injections and have asked Dr for more B12 but he is reviewing and I go back on Friday.

My treatment and referrals have been very quick so I’m guessing they think it may be something nasty!!

Anyway, there it is so far... without the huge list of symptoms...I don’t have any other tests other than this but will ask on Friday.

I struggle with my weight and always have.

Sorry to ramble on... if someone could point me in right direction I would be so very grateful!!

🤯☺️ x

[SlowDragon Administrator]

You need to get FULL Thyroid testing

TSH, FT4 and FT3 plus BOTH TPO and TG thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Also need vitamin D tested - ask GP

Or NHS postal kit

vitamindtest.org.uk

Come back with new post once you get results and ranges

[SMXX in reply to SlowDragon]

Sorry for late reply, can’t reply whilst at work..

I will ask for testing to be done but if no joy I’ll pay privately.

Thank you x

[SMXX]

So interesting, thank you!! Is there any guidance that I can show to doctor regarding this, so I can try and request testing?? X

[SMXX]

It was never even mentioned at all ... I’ll ask when I go back on Friday , but I won’t hold my breath as I think he’ll say it’s within range !! I’ll ask though and thank you again x

[silverfox7 in reply to SMXX]

If you look on the Thyroid U.K. Site who run this forum then there is lots of info that will show that your doctors isn't treating you well. Print out anything that proves your point and also point out that you got the info from the place recommended by NHS Choices for thyroid dysfunction.

[shaws]

Do not take B12 supplements before you get a proper diagnosis i.e. Do you have Pernicious Anaemia or a B12 deficiency. Do not start any B12 supplements till you have positive proof you don't have P.A. a very serious autoimmune condition if undetected or not given B12 injections. P.A. causes changes in stomach which means we cannot absorb B12 from food and therefore get injections instead.

Other members more experienced than me will respond re your other results. I'd also go onto the P.A. forum and get their advice too.

[SMXX in reply to shaws]

Hi,

Ok this has been noted, Thank you. I’m just trying everything I can to help me feel something like the old me. I’ve been diagnosed with deficiency and PA, ( I’ve seen several Drs since as apparently mis-informed by 2 of them so have definitely got deficiency) and had intrinsic factor test last week after loading doses!!

Which will screw the results!! Honestly it’s frightening how we get treated !! It’s so dangerous, these are our lives they are messing with !!

Makes me so angry... x

[SilverAvocado]

Lora7again, I dont think that SMXX is on any thyroid medication at the moment, so the aim of a TSH under 1 wouldn't apply. The blood tests of a person on thyoid replacement hormone are very different from a healthy person or anyone who isn't on thyoid hormone. Healthy TSHs can go up to at least 1.8 and probably all the way to 2 or even higher.

I do agree that this TSH is elevated, a TSH over about 2.5 indicates something isn't working properly. However, because you are right in the middle of B12 deficiency I would be more cautious than usual in saying there is probably a thyroid problem. Being very ill can raise the TSH even though there isn't long term thyoid illness.

I agree with others that you need to have a complete thyroid test, that is TSH, freeT4, freeT3, and ideally thyroid antibodies, too.

There is also a very good pernicious anaemia forum on healthunlocked. It might be that if doctors aren't helping to raise your B12 you need to research there and double check everything doctors are doing, which is something we definitely have to do with thyroid treatment.

[SMXX in reply to SilverAvocado]

Thank you for this info, I will ask and keep you updated.

Yes I am on the pernicious Anaemia page on here too.. it’s as fantastic as this one.

So much information with it all, I’m struggling to keep up... doesn’t help feeling like I’ve been dug up !!!

Thank you x

[SilverAvocado in reply to SMXX]

Another point I should have mentioned, even though a TSH over about 2.5 indicates something is going on, doctors are not always aware of this. Most will want to wait for your TSH to get out of range or even higher before they would diagnose a thyroid condition. Go in prepared for them to be very unimpressed, and you may need to buy your own tests.

[SMXX in reply to SilverAvocado]

Thanks love... can you direct me to link to this information as I’m going to print everything out so I’m prepared?? X

[SilverAvocado in reply to SMXX]

Unfortunately doctors wanting to see a high TSH is pretty non-negotiable Unless you have a really excellent doctor who is very interested in getting to the bottom of your illness you will probably have no joy with convincing them it's an elevated TSH.

Here is a paper that shows TSHs in a healthy population, so you can see yours is right at the end of the tail. web.archive.org/web/2004060...

It's probable that if you end up wanting to treat your thyroid you will end up having to buy and treat yourself, which is what many of us here do.

[SMXX in reply to SilverAvocado]

Thank you ... I see !! So let’s say I have tests done privately then what happens with the results do I go back to the dr with them for treatment?? Do they recognise and treat from certain companies?? X

[SilverAvocado in reply to SMXX]

Unfortunately if the results come back looking like there is thyroid illness, you are in a difficult situation Doctors tend to only look at TSH anyway, but they will often have some specific threshold in mind, and will only diagnose and treat once the TSH gets that high. It's a disgraceful situation, and leaves many people waiting years for their TSH to cross that line and get a diagnosis.

Probably the situation will be that you'll have to get private testing, and if you decide you want to treat with thyroid hormone you will have to buy it yourself. Many of us are in the same position, treatment of thyroid illness is in a terrible state I have had my thyroid removed due to cancer, and I now buy my own.

[SMXX in reply to SilverAvocado]

Oh my days ... I’m so sorry love!! Are you well now ?? How do you buy your own treatment is this from another country? It is sadly the same for B12 deficiency and PA, I’ve ordered stocks of injectable B12 from Germany?? Although I’m holding out to continue SI until all of my treatments and tests are back !! It’s a bloody disgrace!! X

[SilverAvocado in reply to SMXX]

I'm a lot better than I was, but have been adjusting my dose for 3.5 years and still not very mobile! The doctors just did the simplest things, all they're willing to do. Disgrace is very right, unfortunately we are on our own for most of it

[SlowDragon Administrator in reply to SMXX]

Come back here with new post once you get results and ranges

Members can advise on next steps

Often getting all four vitamins optimal can raise TSH

If you have high antibodies, and symptoms you should be treated

[SMXX]

Thank you for this ... the gps obviously just go by the recommendations from blood tests ... shocking isn’t it !! Back at Drs on Friday so I’ll ask ?

X

[SilverAvocado]

The paper I shared with SMXX is probably the best one that gets circulated on the forum. This has a graph on it of TSHs in a population screened somewhat for thyroid illness: web.archive.org/web/2004060...

It's a bit of a tricky issue, because there are two different important thresholds. You mention having a healthy working thyroid, which is one, talking about being optimal. But there is also the cut-off when you can say to a person they almost certainly have thyroid illness.

One of the doctors who makes a lot of YouTube videos (but I dont follow him so don't know the name) uses 2 as a cut off for being healthy. But he's not actually talking about thyroid illness, he's talking about all illness. We know that a TSH can be raised in chronic illness even if the illness has nothing to do with thyroid. Which is why people on this forum tend to have a cut-off more like 2.5.

Its very very hard to see decent data about what numbers healthy people would have. And even when we see them, we can't be sure the figures do come from entirely healthy people.