Why are people who need thyroid blood tests so ... - Thyroid UK

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Why are people who need thyroid blood tests so badly served in the UK?

sk17rob profile image
27 Replies

hi Folks,

Am I REALLY having to pay £150 + to get a full blood test for hypothyroidism in North Derbyshire? My GP looks at me like I'm insane when I ask.

A Guy Who Feels Like He's Trapped In An Episode Of The Prisoner!! :-(

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sk17rob profile image
sk17rob
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27 Replies
Clutter profile image
Clutter

Sk17rob,

You can get TSH, FT4, FT3, thyroid peroxidase and thyroglobulin antibodies and some mineral and vitamin tests for <£100 via Blue Horizon and Genova thyroiduk.org.uk/tuk/testin...

lc1973 profile image
lc1973

I usually get TSH and FT3 done for free by the NHS and vitamins if my GP thinks necessary based upon symtoms. Why are you having to pay?

LtAngua52 profile image
LtAngua52 in reply to lc1973

Because GP's don't know very much about the thyroid and don't listen to patient symptoms, and often peoplevare extremely ill by the time the GP bothers to diagnose and treat. They don't do the proper tests either. Most doctors don't do the t3 routinely, you are very lucky. Even when they are requested by the gp, labs won't do it if the tsh is in range, and we know those ranges aren't helpful.

You must have a very enlightened go, did they test for the antibodies though?

lc1973 profile image
lc1973 in reply to LtAngua52

Hi LtAngua52

I only get my FT3 tested because i take T3 therefore the FT4 result is not helpful in my situation but i do realise others struggle to get this test done unless their TSH result is surpressed in which case the lab is looking for hyperthyroid i believe! Re antibodies yes they did but they didnt bother to tell me i had them and worse than that told me that it makes no difference in treatment for thyroid!!

LtAngua52 profile image
LtAngua52 in reply to lc1973

It doesn't make a difference in how they treat you, but it would be nice to know if your hypothyroidism was caused by hashimotos. 90% of cases are and many people find that going on a gluten free diet reduces the attacks on the thyroid. Dairy free too sometimes. So while the doctor can't do anything else for you, you could, if that makes sense!

sk17rob profile image
sk17rob in reply to LtAngua52

It makes total sense, LtAngua52. Can I say a great big thank you to ALL the people who bothered to reply, you've helped a guy who thought he was losing his marbles feel VAUGELY part of the world again.

Thanks xxxxxx

sk17rob profile image
sk17rob in reply to lc1973

My GP and their lab simply WON'T do a T3 if the TSH and T4 are in their range of normal. Mine have been TSH of 3.7 and T4 of 14.0. I don't want to fight with people who have been drinking the coolade, it would only end as a row, so I prefer just to get the results sorted. I'm being bombarded with blood pressure lowerers and they just won't entertain it could be my thyroid playing up.

Clutter profile image
Clutter in reply to sk17rob

Sk17rob,

Most NHS labs won't test FT3 unless TSH is suppressed <0.03. They use the FT3 test to diagnose hyperthyroidism and are not interested in low T3 in hypothyroid patients.

Your FT3 is probably quite good because your TSH is high and will be flogging thyroid to convert it. I suggest you wait a couple of months after TSH is 1.0 or lower to order a private FT3 test.

In the meantime, ask your GP to increase Levothyroxine dose. The goal of Levothyroxine is to restore patients to euthyroid status and for most that will be when TSH is 1.0 or lower with FT4 in the upper range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP when you request a dose increase.

sk17rob profile image
sk17rob in reply to Clutter

Kinda confused now, I thought anything over 2 (>2) for TSH was regarded as high or am I misreading this? I'm also thinking I have HYPO-thyroidism so maybe this message wasn't for me?

lc1973 profile image
lc1973 in reply to sk17rob

Hi Sk17rob

Its confusing isnt it but only until you get diagnosed fortunately or unfortunately as it can take a long time to get diagnosed as i experienced. My TSH was nearer 10 when i got diagnosed but GPs once you are diagnosed and treated like to keep you within the "reference range" to be on the safe side, therefore if you have been diagnosed and your TSH is higher than 2 i would suggest that a dose increase might be helpful if you are still having hypothyroid symptoms but if you are trying to get a diagnosis and you are within the reference range then most GPs will say you are "normal" in which case it might be a while before you receive any treatment unfortunately. There are a number of people who post on this forum who are in this situation, some wait it out until they get a high TSH (high TSH = hypo low TSH = Hyper) others self medicate because their GP is unwilling to prescribe.

Clutter profile image
Clutter in reply to sk17rob

Sk17rob,

Your TSH is high, too high for someone on Levothyroxine, which means you are undermedicated and your dose needs increasing.

You are hypothyroid. I was explaining why NHS labs don't test FT3 in hypothyroid patients.

sk17rob profile image
sk17rob in reply to Clutter

Hi, I'm not on anything. I can't even get my GP to discuss the matter as yet.

Clutter profile image
Clutter in reply to sk17rob

sk17rob,

I'm sorry, I assumed you were taking Levothyroxine. I'm afraid NHS won't usually diagnose hypothyroidism until TSH is over range or FT4 is below range.

Supplementing 200mcg is good thyroid support and a thyroid supplement like NutriThyroid might help.

Treepie profile image
Treepie in reply to Clutter

Where is the TSH result? Sky only joined a few days ago and no info is given as far as i can see.

Clutter profile image
Clutter in reply to Treepie

Treepie,

In one of sk17rob's replies earlier "Mine have been TSH of 3.7 and T4 of 14.0."

Treepie profile image
Treepie in reply to Clutter

sorry,missed it,thinkng the mercury pills are not as effective.Started loud snoring again and balance worse.

Decided to arrange blood tests when back from holiday.

lc1973 profile image
lc1973 in reply to sk17rob

Do i take it that you have not been diagnosed as having an underactive thyroid Sk17rob? I would say if you do have and have been taking medication then you could do with a dose increase, sadly if you have not yet had a diagnosis i know from my experience i had to wait until my TSH was somewhere in the region of 10 before my doctor at time reacted, and even then i think i had to wait for another blood test 3 months after that to be sure! But they were testing TSH and FT4 only like you have, they might have tested antibodies too?

LtAngua52 profile image
LtAngua52 in reply to sk17rob

The problem is that knowing yout t4 level is irrelevant without the t3 test, as it won't tell you how well you are converting t4 into t3, which is the active hormone your cells need. This is why we end up doing private blood tests I'm afraid. :(

lc1973 profile image
lc1973 in reply to LtAngua52

I agree it is better to have all 3, TSH, FT3 & FT4 to show that you are "converting" the FT4 to FT3 but from my experience this does not happen until later down the line when you have been diagnosed and are then experiencing symptoms despite having reasonable "in range" results.

LtAngua52 profile image
LtAngua52

As clutter says, there are cheaper options. I used blue horizon thyroid plus 10 which does a thorough screening of your thyroid, including the antibodies, vit b12, folate, ferritin as the very necessary t3 & t4.

I don't know if you can still get the discount but if you go onto thyroid uk website and into the testing menu you will find blue horizon there. I think they still make a small donation to thyroid uk too.

We shouldn't have to as you say, but I can tell you it's worth it. When the NHS doesn't listen we have to take control over our own health. The tests can be done with a blood draw, or, like me, you can do a finger prick sample. I'm not sure if there is an extra charge if you ask a hospital to do it. The finger prick test was quick, fairly easy and results back in two days. Good luck. :-)

Greenwall profile image
Greenwall in reply to LtAngua52

Hi I did this a few weeks ago, and got TUK discount.

They charge a huge amount more if you go via hospital, so I was very brave and did the fingerprick. Results were back with 48 hours - unlike going via GP where you have to book appt weeks in advance, and wait over a week for results.

I agree we shouldn't have to, but until NICE changes guidelines, and GP's have more training on it, then I can't see an alternative. I know it's soooo frustrating!!!

sk17rob profile image
sk17rob in reply to Greenwall

I know this sounds a stuid question, but.....how much blood do you have to squeeze out of your finger to ensure there's enough there for them to test?

Thanks

NatChap profile image
NatChap in reply to sk17rob

It's not a huge amount, they send a small container about the diameter of a pencil and maybe a 1\3 of the length.

Greenwall profile image
Greenwall in reply to sk17rob

They send 3 "lances" so you can stab 3 different fingers, but I only needed to do one, and it filled fairly quickly. Like Natchap says, it's not a lot - no where near as much as GP takes. Just make sure you read the instructions and open up everything to find the very small tube inside the carrier.

in reply to LtAngua52

Yes it is 35 pounds more to have it dine at a BMI hospital. Then the nearest hospital may be a train ride away. I am going from chester to crewe on thursday to have bloods done for blue horizon. Just wish they also had a deal with bupa as there is one in chester.

TupennyRush profile image
TupennyRush

Nice guidelines clearly state that if you're not yet hypo ie TSH>10 but have symptoms then they should 'trial' you on levo. See bottom of my profile for relevant link.

I suggest printing it out, using a highlighter (just so the GP cannot miss it) and writing a letter of complaint

Good luck!

CarpaBob profile image
CarpaBob

I really wish I had taken out health insurance as private seems to be the only way to ensure you get well. The ridiculous situation with blood tests is that the so called "normal ranges" are really of little use to diagnose, monitor and treat. It frustrates me that they refuse to test and treat certain things yet are happy to dish out numerous other drugs and test for irrelevant things.

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