Update

[Maggiesmum]

Not sure if I should have started a new Post or continued my previous one - sorry! And double sorry - because it's lengthy.

I duly attended my appointment with the Emergency Nurse Practitioner, all guns blazing and ready for battle. I politely requested a 25mcg increase in Levothyroxine - to be told "no, your levels are within range". I referred him to the NHS Guidelines to GPs for treating patients taking Levothyroxine - to be told "there are lots of guidelines and we may not follow those" I repeated they were NHS Guidelines to GPs!! I described my symptoms - was told I'd probably feel better when the weather improves. I requested referral to an Endocrinologist - "they won't tell you anything I'm not telling you". I just about lost it at this point, wonder if the GPs know what an expert this guy is. Anyway, he thinks I may have subclinical hypothroidism. However, he did say he would arrange to have bloods taken for Vitamin D, Calcium and that after reading my notes he may add other blood tests. To his astonishment I told him I'd make the appointment for bloods on the way out because that would be another 2-3 weeks. 10 days later I received a phone call from Receptionist saying he wants bloods for Thyroid and TSH but not Vitamin D or Calcium. He also suggested I take Cholecalciferol (obviously being so superior he couldn't say Vit D!) but that will take at least 3mths to have any effect - I've actually been taking Vit.D since November last. I was also to be told that he won't increase my meds unless there is a dramatic rise in TSH since the last blood test. Obviously due to the current situation my bloods appointment was cancelled.

I have been 'self-medicating' over the last 2 weeks with an extra 25mcg either daily or alternate days, and feel so much better. Unfortunately I'm now running short of meds so am trying to source online.

Sorry for rambling but you were kind enough to reply and advise re my last post that I just wanted to add an update. When this current situation is over I'll arrange private tests. Thanks for 'listening'.

[SlowDragon Administrator]

Have you had the list of recommended thyroid specialist endocrinologists from Dionne at Thyroid UK?

thyroiduk.org/tuk/About_Us/...

You are going to have to go over GP’s heads

healthunlocked.com/thyroidu....

Roughly where in the UK are you?

[SlowDragon Administrator]

Medichecks have offer on at moment

Can test at home ....Monday, Tuesday or Wednesday

healthunlocked.com/thyroidu...

[Heloise]

Hi mum, You're welcome. I certainly share your disgust with this absolutely controlling ignoramus. I've been here for six years and am still perplexed by the way thyroid patients are treated. I've decided that this opportunity to subjugate another human is just too easy and feeds some deficiency they have. I think the way you reacted is inspirational. We should follow your attitude in finding what we need and going about fulfilling it. Good for you!

[Musicmonkey]

Perhaps at this stage you can write to your GP saying that because your blood tests were cancelled, you felt justified in following national guidance and 'upped' your meds as a trial. You have found that you feel better, but now need him to increase your prescription.

[SlowDragon Administrator in reply to Musicmonkey]

Great idea

[SlowDragon Administrator]

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

[Maggiesmum in reply to SlowDragon]

Hi, First I must apologise for taking so long to respond due to my PC dying on me!

As you suggested I've emailed Dionne for a list of specialist endocrinologists and a copy of Dr Toft's article.

I live in the Durham area.

Is it OK/easy to do a full blood test via finger prick? If so I'll order a test ASAP.

I will write to my 'named' GP as Musicmonkey suggests.

I've just noticed another post that mentions Eltroxin and Synthroid, are these alternatives to Levothyroxine? I was trying to buy Levothyroxine online and didn't consider the other two.

Thanks for all your help/suggestions, I'm accumulating quite a mass of paper.

[SlowDragon Administrator in reply to Maggiesmum]

Levothyroxine is generic

Eltroxin is a named brand ...but identical

Generally we should try to stick to same brand of levothyroxine

Which brand are you currently taking?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Only test thyroid levels after minimum of 6-8 weeks on increased dose

Thousands on here do finger prick blood test...takes a little getting use to

See tips here by Seasidesusie in this reply

DIY finger prick test

healthunlocked.com/thyroidu...

Always do any blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If taking any supplements that contain biotin (eg vitamin B complex) remember to stop taking a week before any blood tests as biotin can falsely affect test results

Post a bit slow at moment...only do test on Monday or Tuesday morning

Results emailed to you 2-3 days after lab gets your kit

List of different brands levothyroxine available in UK

thyroiduk.org/tuk/treatment...

[Maggiesmum in reply to SlowDragon]

Thank you, I'll order the test kit and aim to send it off next Monday.

My Levo is MercuryPharma 25mcg and Actavis 50mcg.

[SlowDragon Administrator in reply to Maggiesmum]

Do you always get that mix of brands

[Maggiesmum in reply to SlowDragon]

Yes the same brands from the same local chemist.