Hoping for some advice

[overtherain]

Hello, all. Having read through some of your questions and posts, I feel that my scenario/question is definitely in the right place for some solid advice. The knowledge here is really reassuring and I would appreciate any help or advice. Hopefully one day I can return the favour.

I was diagnosed hypo a long time ago now, and I’ve avoided seeing my GP (touch wood I’ve not needed to) for a number of years. I’ve ignored their blood test review calls and texts and up until today, I was able to get away with it. I’ve now had to book in for a blood test to check my thyroid levels, and I can’t really put into words how much I’m dreading it.

The reason I’ve not seen my GP or visited the surgery for review is I have no confidence whatsoever. They’ve shown signs of incompetence before.

I’ve been taking 125mcg Levothyroxine for years and I have always been well on it. The dose was fiddled with in the earlier days but this has been my dose for the best part of a decade. I spent 4 years back and forth for tests at hospital before reaching that dose and now, I’m well and I’m happy.

The sticking point - or it will be for my GP - is my TSH. As far as I know, they won’t test anything else. My last private test with Thriva was in October 2020 and for a few years of private testing it’s always stuck around the 0.04mIU/L point. Their range is a bit odd but they show their ‘normal’ as 0.27-4.2mIU/L. Of course, I’m in the ‘abnormal’ section.

I am frightened to death of going for my test on the 15th. My doctor is the same one that treats my Mum, who is also hypo, and they’ve reduced her medication with no consultation before, and a face to face appointment needs to be booked weeks or even months in advance. Honestly!

When I booked my appointment today, I was told I wasn’t allowed to see a GP until after the results had been gathered, and an appointment to discuss them isn’t guaranteed. So do I not get to discuss anything with them? I just accept the change? I really don’t want to alter the dose and I wish I could explain this and argue my case. I know from previous experience that symptoms are not taken into account by them, it’s just the numbers.

These are my options:

- cancel the test and risk a ‘daily’ or ‘weekly’ prescription until I go (they’ve threatened this before)

- carry on with my dose and attend the blood test, and hope I get consulted when my medication reduces (because it will!) or wait weeks/months to argue whilst on a lower dose

- lower my dose myself in the weeks before the test in the hope it raises the ‘all important’ TSH number, risking adverse symptoms and a possible reduction still needed if it doesn’t work in time

I can’t believe I’m considering the last option, but could I do this? This is desperation talking. I’ve dreaded this moment for years (apologies for the dramatics, but it’s true)

I can’t fathom that this is the position I’m in when I feel well. Not jittery or on edge or suffering with my heart or tummy or nerves. Nothing. I monitor my heart by wearing a fitness tracker and it always behaves perfectly! ‘If it ain’t broke, let’s break it’ springs to mind.

I hope I’ve not put anyone in a position by posting this but I am at my wits end. And I apologise for the emotional tone. If anyone can advise what to do, or how to approach this, I would appreciate it.

Thank you in advance.

[greygoose]

There is a fourth option: go for the test, accept the reduction in dose, but buy our own levo to tide you over until you can see your GP to discuss it.

No, they don't take symptoms into account - they don't even know what the symptoms are for the most part! They only care about the numbers because that's all they learnt about in med school, there's no logic to it, so no point in looking for it. They might just as well be machines for all the notice they take of the patient. And, I fear, one day it will come to that. They think hypo is so easy to treat that they'll just hand the management over to the computer!

[overtherain in reply to greygoose]

Thank you, greygoose!

You are right, there is that fourth option and it’s one I should really consider. It’s got to be safer than lowering my dose, that’s for sure.

If only advancements in treatment for thyroid disorders moved as quickly as advancements in computers and technology. We can live in hope! I’m just grateful for those on this forum 😀 there’s a wealth of knowledge here.

Thank you again.

[greygoose in reply to overtherain]

You're welcome.

[SlowDragon Administrator]

The GP only likely to test TSH …..obviously completely inadequate

In order to “argue your case” you need to get FULL thyroid and vitamin testing done yourself

Medichecks or Blue horizon or Thriva

Always test as early as possible in morning and last dose levothyroxine 24 hours before test

This gives highest TSH and lowest Ft4

If Ft3 is not over range you’re not over medicated

Important to regularly retest vitamin D, folate, ferritin and B12 as optimal vitamin levels helps how levothyroxine works and might increase TSH a little

As you wear a fitness tracker print out summary of resting heart rate over last 3-6 months.

What’s your typical resting heart rate

Many people when adequately treated will have very low or suppressed TSH

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

See reply by Diogenes here (thyroid scientist and researcher)

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

[overtherain in reply to SlowDragon]

Thank you, SlowDragon. Your response has been really helpful and I do particularly like having those guidelines to reference if I need to.

I’ll get a home blood kit ordered and check those vitamin levels too. I used to be really on top of my vitamins as well as my thyroid levels but I’m ashamed to say, I let that slip in the months leading up to the pandemic and it’s continued to slip since then.

I’ve got my fitness tracker stats and I’m averaging 57bpm for a resting heart rate.

Thank you again for your advice, it’s really appreciated.

[shaws]

Make an appointment for your blood test as early as possible - It is a fasting test but you can drink water.

Do not take thyroid hormones before test and make sure you are well-hydrated a couple of days before.

If you've not had a 'Full Thyroid Blood Test" for a while request one i.e.

TSH, T4. T3, Free T4, Free T3 and thyroid antibodies. Plus B12, Vit D, iron, ferritin and folate.

Get a print-out of your results (with the ranges) and put them on a new post for comments.

You don't need to do other than the advice above. It's better not to try to alter blood tests in your favour especially as you haven't had a test for some time.

Many members of this forum have found that few doctors know very much about how to treat patients who are hypothyroid and they seem to only look at a TSH result only, which is from the pituitary gland and not the thyroid gland.

[overtherain in reply to shaws]

Hi shaws, thank you for replying to this.

I decided not to alter my medication. I’m almost embarrassed I let desperation do the talking in my original post. The responses I’ve had to it have talked me down somewhat, and now I’m feeling more confident not to accept the bare minimum.

I’ve managed to get a 08:10hrs appointment so I’m hoping that is early enough!

Once I receive the results, I will absolutely post them.

Thanks again for your help.

[shaws in reply to overtherain]

I'm glad you've made an appointment and it's certainly early enough - just remember not go in your pyjamas 😱 Also don't take dose of hormones before - but afterwards with one glass of water.

The majority on this forum know 'desperation' because we've been either undiagnosed or diagnoserd and not improving or have developed more symptoms.

[SlowDragon Administrator]

If GP insists on dose reduction

You have several options

Change GP

See recommended thyroid specialist endocrinologist, who would then over see and instruct GP not to meddle with your dose

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

Self source extra levothyroxine

[tallulah100]

Hi, I have been in this position too. My dose has been reduced by my gp. But I continue to take the dose that makes me feel well. I take 200mcg per day. Gp reduced to 150. I continue with 200. When I renew prescription they don't check how long since the last one, so they assume I am doing what they want. Have been getting away with it for about 2 years. You could do this. I too dread gp appointments and avoid them as much as I can. I wish you best of luck.

[overtherain in reply to tallulah100]

Hi tallulah100, thanks for your reply to this post.

Your scenario certainly seems to parallel mine in some ways and - I mean this nicely - it’s good to know I’m not the only one worried about those appointments!

If you would be happy to, could you send me a private message detailing how you get hold of that extra medication, where it’s from and so on?

Thank you again.

[tallulah100 in reply to overtherain]

Hi, yes i don't get extra, I just ring and ask for my prescription. They prescribe 150 per day, which in my case is two packs of 50mcg and two packs of 100 mcg. But instead of taking 150 per day I still take 200. When I run out I just ring for another prescription. Either they never check how long it's been since my last prescription or count how many days it should gave lasted or perhaps they just turn a blind eye, because they are prescribing what makes them happy and if I take more than prescribed it's down to me. I hope I have explained OK. I hope it helps you. Best wishes.

[alysonkerry-]

Like everyone else I’ve experienced the same scenario with my GP . Everyone is different and only you know how your body feels. My experience is that usually I feel fine and they want to change my dosage which then takes months to get right thankfully it only happens every few years. Stick by your guns & hopefully your GP with firstly listen & you won’t need a reduction of meds. My GP is very strict about at least a yearly blood test albeit just for TSH for what it’s worth or else I can’t get prescription. I’m having a few issues at the mo and have just ordered a private blood test which depending on the results I will then contact my GP good luck 🤞🏻