Access to testing - help?

[LittleLady35]

I'm new here - didn't know where else to go for help.

I have so many thyroid symptoms.

I do have a few other health problems going on, but I have the hallmarks. I am so fatigued all of the time no matter how much sleep I get. I'm not just saying I'm tired - I am all out mentally and physically exhausted from the minute I open my eyes to the minute I go to bed, sometimes it's like moving through a swamp. I'm always cold all the time, I get hot and cold flashes (I'm a 25 year old female), my temperature is always broken, I get a lot of unexplained fever, I'm eating very little but gaining weight (possible water retention especially round ankles and knees). I could go on...

Long story short - I'm convinced my thyroid isn't working, but my GP keeps telling me my blood tests are fine. I've been on the Thyroid UK website and read about the different testing.

Basically it goes through the different blood tests - however, my GP will only test my TSH, he has not, and will not do any other TFTs, he says that the other ones aren't available here... I don't know if this is because I live in a remote part of Scotland, but blood samples can always be sent to other laboratories, I know this because I once had a sample for something else sent to Oxford), or if it is the way the Scottish NHS operate that only a consultant specialist can order these types of tests.

The second link is all about how to interpret them, it says that normal TSH does not mean that you don't have a Thyroid problem... so I'm really trying to figure out how to access the other TFTs such as the TT4, FT4, FT3.... I am in too poor health to work and am only on very minimal benefits - so paying for private testing, is totally out of the question here.

So I'm just wondering if anyone has any ideas on how I can get these other tests done, how I can get a referral to the relevant specialist (I have other health issues, which is why my GP is reluctant to send me to yet another specialist)... or how I can get help (from a charity maybe?) funding some private blood tests. My fatigue is absolutely out of control and I'm totally desperate.

I am also waiting for adrenal gland testing, as well.

EDIT; I'm on B12 Injections, Folic Acid and Vitamin D - all these get tested regularly along with my Ferratin levels.

[Hidden]

Hello Littlelady and welcome to the forum

I'm fairly new myself but have learned so much already here!

You can access private labs via this link to the Thyroid U.K. Site:

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

And for any newbie I highly recommend they read this post from our forum first for the newly diagnosed:

healthunlocked.com/thyroidu...

Followed by this next one for more info regarding specific blood tests such as nutrient levels:

healthunlocked.com/thyroidu...

[LittleLady35 in reply to Hidden]

As said in my original post, I can't afford private testing.

[silverfox7]

Welcome to the forum. Well if your doctor can test TSH then the lab are able to test test the rest. I can appreciate at private testing will be difficult for you so trying to think outside the box a little. One thing I can say though that eating less is more likely to put Wright on as if your body things it's not getting enough then it hangs onto all it can!

You mention you have various other problems and it might be helpful to mention them but I'm just wondering if they could in fact be caused by your thyroid and I suspect no one has managed to help you with them. Some of our simp toms are mistaken for other things like carpel tunnel. The pain from that is pressure on nerves in the forearm but can just as easily be caused by a build up of fluids cause by an underactive thyroid. So what could be helpful is for you to look on the Thyroid IK site. Lots of useful in for including how to prepare yourself for a blood test which could be very useful in your case.

It also has a long list of problems that being underactive causes. This isn't to frighten you, we tend to get a small selection but useful for you to print and tick off all the ones you suffer with and take that with you when you see your doctor. He will probably say you shouldn't go reading the internet but if you point out to him that the site is recommended by NHS Choices for thyroid disfunction he can't say much.

Do you know what your TSH reading was? If not ask the receptionist and ask what the range is as well as they differ from lab to lab. Then if you can post that for comment it would be helpful. Really you need the full panel but that could be a helpful start. Eat as sensibly as you can as we all need enough for our bodies to function well. It's the 'bad' food we eat that we should avoid.

If, when you are other sypmpyons on the list is there another doctor at the practice you can see as that one may know a little more and been more helpful.

[shaws]

Welcome to our forum and I am sorry you are finding things difficult at the moment as your doctor has only taken a TSH test.

When you had your blood test did you have it at the very earliest, fasting (you can drink water) the reason being is that the TSH is highest early a.m. and reduces during the day so may make a difference in being diagnosed or not.

It is unfortunate your GP didn't do T4. If you didn't have your blood test at the earliest, ask GP to do another as you've taken advice from the NHS Choices for help/advice about the thyroid gland. Ask if he will request more than TSH and B12, Vit D, iron, ferritin and folate. Deficiences in vitamins/minerals also cause symptoms.

I know money is tight but we have private labs and you can get Free T4 and Free T3 taken by pin-prick postal test and these give a bigger picture.

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

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

Tick off the symptoms below you have and give to the GP with the other chart as well.

thyroiduk.org.uk/tuk/about_...

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

Ideally, if he could test TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. - we can but ask or TSH, T4 and thyroid antibodies.

Get a print-out for your own records for every blood test and make sure ranges are stated. Ranges are important for interpreting results.

[schrodinger]

I understand that the lab at Inverness will only do tsh so you may need to go further afield for the tests.

[LittleLady35 in reply to schrodinger]

I've had blood samples sent to Glasgow and Oxford before - why can't they do the same with this?

[greygoose in reply to LittleLady35]

Because of the cost. They don't want to spend the money on tests they deem 'unhelpful and unnecessary'. It's pure ignorance, of course, but they hold all the cards.

[Salphy]

Sorry you feel this way and money's tight. I'm the same age and know how it feels to feel so rubbish when everyone around you are living their lives like you should be.

My dad tried to get t4 tested on the NHS. The gp ordered it but the lab refused and said they'd only do so if ordered by an endocrinologist... and that's in Greater Manchester for someone who's been treated with T4 for 10+ years and still wasn't within range.

Unfortunately due to your gp telling you you're OK, it appears likely that if you do have an issue with your thyroid then you would be subclinical, as I was. Which unfortunately means you have very little chance of being referrered to an endo for more tests. My first gp told me my slightly elevated result was clinically insignificant and to retest in 6 months.

I work part time (would spend my whole life asleep if i did full) so luckily I was able to access private testing. I got my own tests and changed gp and started treatment for vitamin deficiencies and underactive thyroid a month later.

Your gp should be able to test for vitamin deficiencies if you ask and tell him how you're feeling. A lot of the symptoms overlap with hypothyroid symptoms. It would be helpful to know what your tsh reading was with ranges. then we can advise if it looks as though your thyroid is struggling or you need further tests.

For me private testing has been worth every penny. I now use them for my retests after a dose change which has been every 8 weeks since I started... So that's a lot of pennies but it gives me a much clearer idea of what's going on and why I feel as I do.

Medichecks is one of the companies alot of us use and at the minute they have a discount code for 20% off.

They test TSH + T4 for £29 but if you use the code INSIDEOUT4 it takes it down to £23.20. Ideally we'd want TSH, T4 and T3 testing. It would also be helpful to get 2 thyroid antibodies tested too but that's a bit more expensive. (just under £50 with code for all 5 tests with code)

I don't know how long the code is valid for. I used it yesterday. But they regularly have deals on thyroid tests if you need time to save up.

Unfortunately it's very hard to get these tests on the nhs so very unlikely you'll be able to until your TSH is well out of range.

Hope that helps x

[Hidden in reply to Salphy]

Very helpful info Salphy! 😌

[humanbean]

If you could get your GP to test nutrients it would help i.e. vitamin D, folate, vitamin B12, ferritin/iron (in an ideal world you would get an iron panel and a full blood count, not just ferritin or iron).

And if you want to get Free T4 and Free T3 testing then this test might not be so out-of-reach financially as some of the others :

medichecks.com/thyroid-func...

[LittleLady35 in reply to humanbean]

I've been being treated with B12 injections for 10 years. My ferritin drops from time to time, I'm on Folic Acid and Vitamin D too after low bloods.

[bluebug in reply to LittleLady35]

Out of interest can you get the test results and ranges for vitamin D, folate and ferritin plus put the dose of supplements the GP has prescribed you down.

I suspect that you aren't being prescribed enough of one or both of these which won't help.

[MiniMum97]

If you can afford to get this test done privately. It tests everything you need to check your thyroid and key vitamin levels:

medichecks.com/thyroid-func...

On a Thursday Medichecks often reduce the price of this test so I've paid £79 for it the last two times.

Once you've had it done then come back here with your results and members can help you interpret them.

[janeb15]

I hear what you are saying about the expense of private tests and I know you are fatigued to the core so maybe your next step should be to gather all of your strength and challenge your doctor. If he is convinced that you don't have a thyroid problem (and you may not) ask him what exactly is wrong with you. There are other things that present with the symptoms you mention. Has he tested for these - e.g. mast cell problems, Lyme Disease (although the UK test is pretty unreliable), chronic viruses, mould biotoxins? All of these illnesses can affect your thyroid and adrenal function. Has he checked your methylation, your magnesium levels, whether you have porphyria or candida? There is a lot he can check without dismissing you. It shouldn't be the case that he feels he has already sent you to enough specialists. He clearly hasn't found out what is wrong with you, and he needs to work a bit harder at finding out. Don't just assume that because you have a thyroid problem this can be put right by taking thyroid and adrenal replacements. Sometimes there are underlying causes of thyroid dysfunction, but these are rarely investigated. Jane x