What thyroid maintenance blood tests are we entitled to on the NHS?

[Lotika]

Hi -

I'm having some drama getting my local GP surgery to test me for everything recommended by other posters on this site. I am on 75mg of levo daily but still feel tired so I don't feel my condition is being optimally managed just yet.

I got diagnosed as hypo in May when I was showing symptoms of vitamin D deficiency having just returned from a sunshine holiday(!) Since starting levo, the NHS won't test me for Vit d saying that it is because I am not in an at risk group. They also refuse to test for thyroid antibodies because "it won't tell us anything useful". I've never been tested for the latter before, so presumably it will tell us whether I have Hashimoto's.

I've booked a face-to-face with a GP for next week so I'm curious to know whether there's anything in the current guidelines which mean I should be tested for Vit D or thyroid antibodies.

[Nanaedake]

Unfortunately the Nice guidelines are in production and won't be available until 2019 (I think) and no one knows what they will advocate. Make a list of your symptoms. If you have any joint or muscle pain it may be due to vitamin D deficiency. The internet has lots of info about vit D deficiency being linked to thyroid dysfunction not just Hashimotos.

Explain to your Doc you need to know if you have Hashimotos to help you manage your condition more effectively. He won't believe going gluten free will help but he should know that having one set of antibodies makes you more prone to other autoimmune conditions and as you feel unwell and have symptoms you need to find out what the problem is.

[shaws Administrator]

I believe that only TSH and T4 is necessary by the 'authorities'. They are correct that hypo/hashi's treatment is the same. The fact is as Nanaedake is correct that we have to know if Hashimoto's is the correct diagnosis as we can then take action in order to reduce the attack of antibodies on the thyroid gland. (sometimes they are too much and we may feel hyperthyroid - the antibodies wax and wane).

Tell your GP that deficiencies in any of the following can cause clinical symptoms and you have to know so that you can implement by yourself ways to bring them to optimum. Does he know that low vits/minerals do cause clinical symptoms? Maybe not.

You are entitled to B12, Vit D, iron, ferritin and folate at least once a year (ie to know if you are deficient) and then the following year to see if you are on optimum.

p.s. I am not medically qualified but had undiagnosed hypo but was given plenty of diagnoses for things I didn't have complete with prescriptions.

[Lotika in reply to shaws]

Thank you both.

I like the idea of making a list of symptoms to take to the doctor - I will do that. I do have muscle and joint pain (I put it down to poor posture and am seeing a physio for that) but I will bring it up. Additionally I get occasional night sweats. I thought it was early menopause but apparently it isn't - it's vitamin D deficiency - and how I got diagnosed as hypo at all by an endo I was seeing for a different condition.

Great advice on the Hashi's front too.

Thanks for this - one of my symptoms seems to be getting incredibly tearful some days and i'm having that today. It's part the frustration with it all and part the fact that, being low energy and overly emotional right now, it's so hard to deal with anything - particularly with getting optimum treatment. It gets so chicken and egg!

Lotika.

[shaws Administrator in reply to Lotika]

We can get quite emotional as everything is out of kilter when hormones are too low. We need optimum hormones as well as vitamins/minerals at optimum and it is o.k. to feel sorry for ourselves because others who are healthy - even endocrinologists - are incapable of knowing how unwell we feel when hormones are low. These hormones drive our whole metabolism, from head to toe.

[Lotika in reply to shaws]

Aw, thanks. It's reassuring to know that there are people here who know how I feel and know what I mean. There were days early on in the treatment when I felt like I was on the edge of a breakdown I felt so all over the place! Better than that now, but definitely not right. I used to be the stoic sort who never cried at all! Today it's been at least once an hour!

[shaws Administrator in reply to Lotika]

My mother always used to say 'A Good Cry' will makes you feel better. After all it isn't weird to laugh, so crying is just the opposite (emotions).

[bluebug in reply to Lotika]

Don't mention you are tearful to a doctor/health professional if you want tests unless to say something like the pain hurts so much sometimes in your bones/muscles/joints it makes you cry, otherwise they will say you are depressed and give you antidepressants.

[shaws Administrator in reply to Lotika]

Thee are a list of symptoms.

[pippan]

I had the same problem when I asked for everything to be tested as advised on here. No way was I getting it but after explaining that I needed to know if I had antibodies because if you have one autoimmune condition you are more likely to have others, he agreed. Laughable that he just wouldn't think that anyway. So glad I did because my TPOab's were 3000+ and got referred to an Endo. Which then meant I had all other autoimmune conditions tested for along with everything else that is mentioned on this forum. Do your best to be assertive and don't take no for an answer. Bloody GP's. Good luck.

[bluebug]

No one is entitled to tests on the NHS you have to have a clinical need which is decided by the medical professional. However there is language you can use to get a doctor/nurse with less of a god complex to test you part of this is - as you rightly indicated - is knowing the criteria to get tested.

One thing to be careful off is mentioning the internet to them. Many doctors and nurses aren't as computer literate as you think, so they view most of the stuff on the internet as garbage. They don't realise that you can get access to stuff like peer reviewed research papers, patient support groups that include professional people, and top university professors including medical ones lectures and blogs.

Anyway if you want your current local guidelines for vitamin D testing then google your local teaching hospital followed by the words "vitamin D" and if that doesn't work google your local authority followed by the words "Vitamin D".

There is a generic criteria where people should be tested but knowing people who fit the strict definition their GPs refused to test them. Also all my male friend and colleagues who are office workers with symptoms including those who were South East Asian, were initially refused until they complained repeatedly. Two of them changed GP practices as they didn't want the rest of their families to suffer with such a rude GP.

Part of the reason for refusal to do tests is due to the cost of the tests and the fact that you can't just test for vitamin D as aches and pains can be caused by low iron and low vitamin B12 plus other things so they have to do a full blood count plus other these other tests.

Also if you turn up with a sun tan you won't be tested as it is presumed that you get enough sun to make vitamin D.

Unfortunately GPs are completely unaware how thyroid conditions effect absorption of nutrients as they know SFA about nutrition won't help your cause. However stating you have pains in your muscle and joints plus feel tired all the time plus any other vitamin D deficiency symptoms and that you work in an office is more likely to get you a tested.

Finally in my area if you are severely deficient and an adult you get a repeat vitamin D test after 6 months of treatment. If you are just deficient you just get one test. After that you are then not entitled to any more vitamin D tests on the NHS until after 2 years of your last test. As best practice guidance states that you are suppose to be tested every year it is up to you to pay for it privately. I was told this and so was one other person I know by a nurse, however every one else I know wasn't told this information as they saw GPs. In addition one of my male friends' who had to change to find a better GP was still fobbed off by a GP when he asked about vitamin D retesting.