Sick of underactive thyroid

[UndertheCedartree]

I have had issues with my thyroid function for about 15 years. Just the odd time when younger but in the last 3 years it has been picked up a couple of times and has just shown up on a blood test again.

Has anyone else had a thyroid that becomes underactive then recovers. It appears to be a response to illness. I am always just monitored when it happens but I really want some treatment this time as it makes me feel so awful. Has anyone else been given medication in this situation. Should I push for it?

The UK is notoriously bad at testing thyroid problems. Minimal testing is carried out and drs rely on the TSH result. It now has to be very high before treatment is given. If yours rises and falls this might be the reason why it’s not been treated.
Solutions I’ve found online in various discussion groups have been private treatment, buying your own treatment from abroad ( which may be risky & I’d have no idea where to start) NHS treatment ( long waits, maybe refused treatment) leave it alone and live with it ( preferred by UK drs)
This has been my experience, maybe others have had better. Have you looked at Health Unlocked?

No advice as this is me too. I’ve had borderline under active thyroid come up on a blood test 4 times now with no treatment and retesting. I find the time of day I have the blood test affects the result. I read somewhere that early morning gives the most accurate reading.

With you feeling awful when it happens I’d speak to your doctor again.

• treating thyroid problems.

@Suzanne999

The UK is notoriously bad at testing thyroid problems. Minimal testing is carried out and drs rely on the TSH result. It now has to be very high before treatment is given. If yours rises and falls this might be the reason why it’s not been treated. Solutions I’ve found online in various discussion groups have been private treatment, buying your own treatment from abroad ( which may be risky & I’d have no idea where to start) NHS treatment ( long waits, maybe refused treatment) leave it alone and live with it ( preferred by UK drs) This has been my experience, maybe others have had better. Have you looked at Health Unlocked?

Thank you. I'll have a look at Health Unlocked.

@CapitanSandy

No advice as this is me too. I’ve had borderline under active thyroid come up on a blood test 4 times now with no treatment and retesting. I find the time of day I have the blood test affects the result. I read somewhere that early morning gives the most accurate reading.

With you feeling awful when it happens I’d speak to your doctor again.

I'm sorry you are struggling with this too. Interesting about time of day. The latest blood test was taken at about 9.30am. I have a phone appointment on Friday.

It's not really that TSH tests are more accurate in the morning, but TSH has a circadian rhythm. It's higher overnight and early morning, and at its lowest in the afternoon. So you're more likely to get a high (underactive) result if you get a blood test early in the morning.

What is the actual TSH level? You can ask your GP to refer you to an endocrinology consultant to discuss it. They may do broader blood tests to see if it's affecting your cholesterol levels etc and decide to put you on thyroxine. A GP is much more limited in what they can do without input from the endocrinologist and generally I've found GPs to be fairly useless at understanding the full impact of thyroid dysfunction.

@Utini

It's not really that TSH tests are more accurate in the morning, but TSH has a circadian rhythm. It's higher overnight and early morning, and at its lowest in the afternoon. So you're more likely to get a high (underactive) result if you get a blood test early in the morning.

Thanks for explaining that.

@JustUseTheDoorSanta

What is the actual TSH level? You can ask your GP to refer you to an endocrinology consultant to discuss it. They may do broader blood tests to see if it's affecting your cholesterol levels etc and decide to put you on thyroxine. A GP is much more limited in what they can do without input from the endocrinologist and generally I've found GPs to be fairly useless at understanding the full impact of thyroid dysfunction.

I don't know the level. Re: cholesterol the nurse did a finger prick test and my cholesterol came out as a bit high. Not sure if this result was repeated on the full blood test.

I know last time 2 levels were talked about re: thyroid. TSH and T4.

Look up your NHS record in the app, the test results should be there. If they aren't then ask the GP exactly what the levels are. Reference ranges are TSH: 0.27 - 4.2 mU/L, Free T4 12 - 22 pmol/L, Free T3: 3.1 - 6.8 pmol/L.

My TSH hovers around 5 getting it retested this week because I can’t lose weight at all anymore.

@JustUseTheDoorSanta

Look up your NHS record in the app, the test results should be there. If they aren't then ask the GP exactly what the levels are. Reference ranges are TSH: 0.27 - 4.2 mU/L, Free T4 12 - 22 pmol/L, Free T3: 3.1 - 6.8 pmol/L.

Ok, great - I've looked.

TSH 5.87
T4 7.2

T3 not tested

Cholesterol is 6.4

A liver function test was done all normal except one slightly high
Serum alanine aminotransferase level 36 u/L

You should definitely be medicated with that TSH and T4, ask for an endocrinologist referral and don't back down. Change GP if necessary, there is no way they should be leaving that.

If the GP still says no, you can directly ask them why they have chosen not to follow NHS guidelines for TSH reference ranges and put in a complaint to your CCG.

@JustUseTheDoorSanta

You should definitely be medicated with that TSH and T4, ask for an endocrinologist referral and don't back down. Change GP if necessary, there is no way they should be leaving that.

Ha. Sorry Mine was 7 and 15, and they refused a referral 3 times (even when haematology asked) and gave me 25mg levo (I'm 5ft 10) Luckily I'm bolshy and now on 75mg

I'm shocked you haven't been medicated with those results, I've heard of GPs justifying it when only TSH (a pituitary hormone that tells the thyroid to produce more thyroid hormone) is out of range, but you're overtly hypothyroid, with levels of T4 (one of the actual hormones produced by the thyroid) being well below range.

I was medicated with a slightly above range TSH and a bottom of the range FT4. I felt awful at that point and had had symptoms for years.

I've been there too. Asking why they weren't following guidelines got the correct result of a referral (then I changed GP anyway). No idea why some GPs are so against medicating thyroid, it's very odd but definitely a thing.

@JustUseTheDoorSanta

If the GP still says no, you can directly ask them why they have chosen not to follow NHS guidelines for TSH reference ranges and put in a complaint to your CCG.

Thanks so much for the advice - so helpful.

@Utini

I'm shocked you haven't been medicated with those results, I've heard of GPs justifying it when only TSH (a pituitary hormone that tells the thyroid to produce more thyroid hormone) is out of range, but you're overtly hypothyroid, with levels of T4 (one of the actual hormones produced by the thyroid) being well below range.

I was medicated with a slightly above range TSH and a bottom of the range FT4. I felt awful at that point and had had symptoms for years.

Glad to hear you got help. Thank you for the advice. I feel awful too. I'm over weight, brittle nails, exhausted and constipated as well as terrible memory problems/brain fog. I honestly feel like I have dementia sometimes!

Oh and cold!

I'm going to check NICE guidelines for back up.

I have no thyroid at all
I have had hypothyroidism all my life picked up fairly late so I was quite poorly as a baby. Thyroid issues run in family sister then hag thyroid cancer and they scanned me as concerned re link that’s when they found out I haven’t got one.

No endo, they will not refer. Despite me being on a large dose I still feel tired, cold and am fat and losing weight is almost impossible. Drs just say levels are within range, rather than listening and looking at the patient in front of them. Sad really there’s loads of people wandering about feeling awful with this, whose drs don’t really care how they feel. I hope you get better care op, I’m due a blood test soon so will check levels and take things further as I’m fed up feeling crap.

You can refer them to 1.5.4 here in NICE guidelines: www.nice.org.uk/guidance/ng145/chapter/recommendations. You have TSH that's too high and you have symptoms, the guidelines are that they should medicate you, the only other option they could take is to refer you if they have some uncertainty about treatment.

I know it’s not my thread but thank you for posting the guidance, a really helpful read. I’ve got a thyroid blood test booked on Thursday. it’s been more than 3 months since my last NHS blood test(August) I had a private one through Medichecks in October, will that gap affect willingness to provide treatment?

I've had blood tests at all sorts of random times, 6 weeks is the absolute minimum gap for testing but there is no such thing as a maximum gap, results is all that matters. In my experience, 3 months is preferred when an endocrinologist is trying to stabilise with medication, 6 months for normal "keep an eye" by endocrinologist and 12 months for normal "keep an eye" by GP.