Help with diagnosis in the UK

[welsh_munchkin]

Hello! My name is Amy and I am new to the forum.

I am desperately seeking some advice about how to confirm if I have an under active thyroid or not. I have seen many GP's over the last 10 years, and had a few hospital referrals to different departments.

Each time I have a new issue (stomach pains, fatigue, anxiety/depression, heart problems etc) I see the GP, who tests my thyroid. The reuslts are "normal" so I am referred to the hospital. They investigate and never find a definitive problem and discharge me.

I have done some research into thyroid conditions, as this is always the first thought when I see a doctor, and I have had it mentioned to me many times by a few friends with thyroid problems. I came across the Thyroid UK website, and looked through the information. I printed out the list of symptoms for an under active thyroid, and have 60-75% of the symptoms listed. I took this to my GP, who did not take me seriously by requested a blood teat anyway. TSH was the only test completed, and it has come back normal so there is no further action.

I am wondering what I can do next! I am considering paying for all of the thyroid tests to be done but where can I go from there?

I am really at my wits end, I am on an ever turning cycle of daily aches, pains, problems and issues with my moods becoming on the borderline of depression every few months. I am 28 years old, and in low levels of pain every day of the week. I am always tired and it is affecting my life. I want to have children in the near future and I am concerned that my health with deteriorate further if I cant find the correct diagnosis.

Can anyone suggest how I can move forward, without paying a fortune to go private?

Thank you in advance.

[steviecat]

Hi, Amy. Welcome. I can understand your frustration. With the symptoms you describe, it is very likely that you are hypo. However, without results, neither you nor the peeps here will be able to help. I imagine that your doctor is judging normality by the fact that your TSH is in range. However, if it isn't 1 or below, there is every chance that you will not feel well. You could start by asking for your test results - you are entitled to them. If you only get the results for TSH, you should ask to be tested for the following:

TSH

Free T4

Free T3

Antibodies (to confirm or not, Hashimoto's disease, which attacks the thyroid).

You should try to be tested first thing in the morning as this is when your hormone levels will be lowest. Do not eat or drink anything other than water before the test.

When you have these, post them here for folks to comment.

If you don't get anywhere with the GP, get tested privately by either Medichecks or Blue Horizon labs. (Search for details on this site).

Also, if you can get tested, either by your doctor or by private lab, for: Vit D, Folate, Ferritin and Vit B12, this would help, as deficiencies in any of these can produce undesirable symptoms. And if you are confirmed hypo, mins and vits will need to be addressed as they aid conversion of hormones.

Good luck

[welsh_munchkin in reply to steviecat]

Hi steviechat,

Thank you for your response! I am speaking to a nurse tomorrow to obtain the results of the thyroid test, so I can compare the numbers to the normal ranges.

It takes 3 weeks minimum to get a doctor or nurse appointment at my GP's and I have to speak to a Dr/Nurse to get the results. Working full-time means it is possible for me to miss the call from the Doctor/Nurse to confirm the results (as I did yesterday).

I did specifically ask the doctor for tests to be completed for TSH, T4, FT4, T3, FT3, rT3 and both the anti-bodies, but the doctor said that the labs will test the TSH and if the results are normal they will not test the rest.

I have been looking at Medichecks online and will now look at Blue horizon labs too.

If I have the tests done, and the results of any of the tests are abnormal then how would I proceed? Would my GP take the Medichecks results seriously, even if the TSH is still in the "normal" range?

When I have some results I will post them here to get some opinions.

Thanks again,

Amy.

[steviecat in reply to welsh_munchkin]

Hi Amy. Firstly, if you do get your results, you don't just want them to be 'normal' you need them to be optimal. It sounds as if you are only going to get results for TSH. And that needs to be at 1 or below. If it isn't, you should probably go ahead and get tested privately. When your doc asks for tests, the labs will do the minimum. However, when you get tested privately the labs will do what you request.

Your doctor may or may not take your private tests into account. But he may then order more tests or even refer you on to an endo. Either way, you will be armed with facts. And with facts, one way or another, you will be able to move forward with a degree of confidence you don't yet possess.

But, yes, whatever results you are able to get, post them here for the enlightened ones to interpret. I must add, that I have no medical training whatsoever and am suggesting options on the basis of my own experience

[steviecat in reply to welsh_munchkin]

Don't think I'd bother with rT3 just yet, Amy. Get the others first. You can go down the rT3 route if needed. As I understand it, it's quite expensive...

[welsh_munchkin in reply to steviecat]

Okay, thanks for the advice

[humanbean in reply to welsh_munchkin]

I did specifically ask the doctor for tests to be completed for TSH, T4, FT4, T3, FT3, rT3 and both the anti-bodies

There are few occasions when T4 and T3 (i.e. Total T4 and Total T3) are measured these days in most countries. Free T4 and Free T3 are much more useful. I think that there are some arguments that Total T4 is useful for pregnant women, but I could have imagined that.

Free T3 will be brushed off and ignored by most NHS doctors. And I imagine few of them have any idea what Reverse T3 is and what its significance is.

As for antibodies, the NHS usually only tests TPO Antibodies, they rarely test Tg Antibodies.

In these days of tight budgets, what doctors ask for is likely to be ignored, and the only test which will be done is TSH.

Hypothyroidism : If TSH is over the range then Free T4 might get done, but Free T3 almost certainly won't.

Hyperthyroidism : If TSH is under the range, then Free T4 will be done, and if Free T4 is over the range, then Free T3 might get done.

[welsh_munchkin in reply to welsh_munchkin]

Not surprisingly, the nurse never called!

I'm having bloods taken on Tuesday to send to Medicheck, for my private tests! See what that shows!

[Hidden in reply to welsh_munchkin]

Hi Amy,

I've been fighting the same battle for a couple of years with my NHS GP. You kind of have to "make them" do the tests. For any referral they have to do a full blood workup, including vitamin D etc. This, at least, is what my doc said when referring me to the chronic fatigue clinic (rolls eyes). Be insistent and they'll do it. You can also request your levels, I get my doc to print them every time I go, and even buy your full medical history for about £50 for backdated results.

[welsh_munchkin in reply to Hidden]

I have asked for all the tests twice, and only ever get the TSH. I can't get my results without seeing or speaking to a doctor or nurse and they are never available for appointments! It's like a vicious circle.

I am having a full set of tests done privately, and will take the results to my GP when I have them. I'll also post them here for people's feedback as I am very new to understanding all this.

Thank you though!

[welsh_munchkin]

Hi steviecat.

Thank you, I was under the impression that TSH 0.4-2.5 is normal and (person) should feel fine. But that the UK normal range is 0.5 to either 4.7 or 10! (although I have no idea how accurate this information is, as I got it online - not from a trusted source like a .org)

The fact you say that TSH above 1 could cause me to feel unwell is quite a shock to me - thank you for sharing.

Although you are not a medical professional, I value what you can share as the medical professionals I am seeing are not sharing any information with me.

I'm going to book my private blood tests tonight. I need to know for certain one way or another.

Thank you again, I will post my results when I have them.

[steviecat in reply to welsh_munchkin]

Just to add... I have done private testing several times. You will probably be going for the finger prick testing. Some, including me, find it a little trying. You will get (from Medichecks) four little 'automatic' prickers. I find I could do with six! Anyway, make sure you are well hydrated. You are advised to swirl your hand in a bowl of hot water to aid blood flow. This didn't work for me. What worked was having a helper to hold the vial then, do the pricking, then, circle the end of the finger with the thumb and first finger of the opposite hand and gently squeeze. When the blood starts flowing, wipe your finger against the raised lip of the vial. You will probably have to do this a few times to get to the top line on the vial. I also now have to have a sterile needle to hand as the 'prickers' only work once. I know, it all sounds a bit Heath-Robinson... Well, that's coz it is! At the end of the day, one is using sharp implements to pierce the skin and that surely ain't natural Good luck!

[welsh_munchkin in reply to steviecat]

Thanks! I have had a look at the test on Medichecks and it isn't a finger-prick - I have to go to the local hospital to have the blood taken. I'll double check this before I buy the tests though!

I'll let you know, your advice may come in very useful

[steviecat in reply to welsh_munchkin]

Hi Lyn, nope - you can do the finger-prick thingy. No point in spending thousands on blood draw at hospital

medichecks.com/thyroid-func...

Look under heading: Procedure

[welsh_munchkin in reply to steviecat]

The website does say that they prefer a venous sample and that it can be organised at checkout - its £35.

I'm wondering if this would be better as the nurses have always struggled to take blood so I am concerned the finger prick wont give enough blood!

[steviecat in reply to welsh_munchkin]

OK, Lyn. That makes sense if you don't have much in the way of spare blood

[steviecat]

Just pinched this from a post by slowdragon, saves typing in my hopeless one-finger style...

Full Thyroid & vitamin test from Medichecks. Most popular one is thyroid plus ultravit £99. (Often have money off offers on Thyroid Thursdays.) This tests vitamin d, folate, B12 & ferritin. As well as both antibodies, TT4 and FT3 as well as TSH & FT4

[Marz]

When you post your results start a new thread so more people see it and will respond. 😊

[welsh_munchkin in reply to Marz]

Ok, thanks Marz

[steviecat]

Have a look here, Lyn. Offer from Medichecks - today only...

healthunlocked.com/thyroidu...

[Mary-intussuception]

I asked my GP for an Ultrasound scan of my Thyroid Gland.

[welsh_munchkin in reply to Mary-intussuception]

I will consider this next time I see the GP.

Thanks

[welsh_munchkin]

Thanks reallyfedup123.

What tests will confirm this disorder? I have just ordered my tests from Medichecks. I have ordered the Thyroid Check UltraVit rT3 test

[welsh_munchkin]

The test I have ordered includes:

TSH

free t4

free t3

both types of thyroid antibodies

ferritin

folate

b12

vit d3

It doesn't include cholesterol or ALT or AST liver function.

I'll keep these in mind though. Thank you, I appreciate you and everyone else help and advice!

for the first time in months, I do not feel alone! haha!

[welsh_munchkin]

I will ask when I speak to the nurse tomorrow!

[Mary-intussuception]

You could also apply for a copy of your hospital records. It's likely that at least one of the Consultants you saw did Thyroid blood tests. Gastroenterologist probably did Antibodies. You could read through all the blood results yourself and check the ranges.

I found out that I had Hypothyroid Blood results in 2008 but no one told me. They were Euthyroid ie within 'normal ' range in 2010. However when I got my records I saw that these Normal results were low in range T4 and high end TSH. Both in 2010 and before 2008.

I don't know when you were last at the hospital but I didn't have to pay the £50 fee for my records because I applied within 40 days of last being seen so they were free. You could phone legal department at the hospital to ask for form and what the procedure is.

X 🐥

[welsh_munchkin in reply to Mary-intussuception]

Thanks, the last time I was at the hospital was in March, so it's been over 40 days. But I will look into it if the Medicheck test results don't show anything.

[Cup-cake7]

Hi only to mention I had to pay 20 pound at the hospital when I went for the blood test, there was no way I could get enough in the pot with the finger prick test lol, the hospital sent the pack back off to medicheck and the results were in my in his in two days .....

Just that I noticed somewhere above about the ranges, I'm very new to all this but have learned the ranges at the labs vary each one, seeming,y they have their own range and it's according to the average of the folk at the lab, so when you put results on here, here always put on the ranges

Lots of lick, right road! Me too realise it was brewing more in2008 xx

[Debs1960]

Hi I've not long been diagnosed and I'm now 57 looking back I've had the same problems as you for years and had "borderline" results retest in three months on numerous occasions I started of as being overactive now I'm underactive and finally on medication don't give up getting results and don't be fobbed off like I was I always thought the GP knows best well since joining this forum I've found that so not true!! Good luck I hope you get sorted soon xx

[welsh_munchkin in reply to Debs1960]

Thanks you Jeppy and Debs1960

I am going to persevere this time, no being let down by the doctors to give up hope and try to live like this for another few months before it gets too much again!