blood tests

[Kimkat]

Had my bloods done this morning at my GPs, results already in which surprised me. Anyway I had an app with my doctor last week and he asked me why I was taking 75mcg for 2days and 100 mcg got the other 5 and I told him that the other gp was letting me adjust my doses myself to see how I fared, she prescribed me 100 and 25 last year and I increased it to 50 then 75 on the 2 days, I feel as good as I can on that dose so he wanted to recheck my bloods again. So this evening I get a text from him saying that my Tsh (note no t3 or 4 taken) is abnormal so he is reducing my daily dose to 75 a day, my mind is totally blown 🤯. Your comments would be much appreciated.

[Kimkat]

I did add another photo but it has only taken one so this was the text from my gp

Clear

[SlowDragon Administrator]

suggest you give him copy of your last private test results from 2 months ago

healthunlocked.com/thyroidu...

Ft3 rock bottom

Folate and ferritin deficient

Recently changed brand Levo too

Refuse to reduce dose and get FULL thyroid and vitamin levels retested 6-8 weeks after last change

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. "

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly

[Kimkat in reply to SlowDragon]

Thank you SD, I have already told him that I feel better in the lower range and I gave him a copy of my last private bloods, he told told me that I shouldn’t be relying on them and so he arranged for this mornings draw. He thinks that if the Tsh is in range there’s no need to check T4 or T3, even when I mentioned my folate and ferritin, he said yes they’re low but within range. I’m just so exasperated with doctors, he actually prescribed antidepressants for me last month because I said my anxiety was through the roof, even though I said that it’s probably because no one is listening to me.

[SlowDragon Administrator in reply to Kimkat]

Suggest put in writing to GP that it’s necessary to test Ft4 and Ft3 before considering reducing dose

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists ……who will prescribe T3 if necessary

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Kimkat in reply to SlowDragon]

I did send an email last night to TUK asking for the list, do I need to fill in the online form from the link you have put here?

[RedApple Administrator in reply to Kimkat]

Kimkat, If you fill in that form, you will be able to download the list immediately, which might be quicker than waiting for someone in the TUK office to email it to you.

[Kimkat in reply to RedApple]

Thank you but they they have replied already so I’m about to sit down and look through the lists 🙂

[Dryski in reply to Kimkat]

Are doctors refusing to test nothing but tsh for cost measures or is this so we have no grounds to ask for an increase in meds when needed? I just had to beg for levo increase because I was only about twenty percent in range. This is just wrong.

[Kimkat in reply to Dryski]

It seems that way, so unless you take things into your own hands you’re doomed

[greygoose]

Tell him you refuse to reduce your dose. He is there to advise you, not dictate to you, and you are not obliged to take his advise. Your dose should be a joint decision, not his alone. You live in your body and know what you need. He doesn't.

[Kimkat in reply to greygoose]

He’s a new doctor at my surgery and at first I thought he was ok but when I try to engage in any form of conversation about my thyroid or quote excerpts from certain links that I’ve read on here, you can clearly see him getting frustrated. When I produced my private blood results he said that he couldn’t refer to them as he doesn’t recognise the company. Sometimes I need to walk away as I can feel myself getting to the point where I might just blow and as we all know GPs take it personally when you show any kind of interest in to what’s going on inside your own body and how you think it should be treated.

[greygoose in reply to Kimkat]

I agree with all that. But, on the other hand, you can't just walk away and allow him to make you ill. And, one way or another, he has to learn that he is not god, and cannot just walk all over people like that.

[Kimkat in reply to greygoose]

Yes you’re right and I do feel like having a go sometimes but all that will do is alienate myself. I think I’ll just have a private consult after I’ve got the list from TUK and see how I go from there. I’m always hopeful

[greygoose in reply to Kimkat]

OK, but you still need to stand up for yourself, even in the private sector.

[pennyannie]

Hey there again :

Well it's also abnormal to drink/digest Radio Active Iodine as a medical treatment which damages the body and leaves your Hypothalamus - Pituitary - Thyroid axis - the feedback loop on which the TSH relies on as working well - broken - and not a reliable measure of anything - especially so if with Graves Disease.

As previous detailed you must be dosed and monitored on your Free T3 and Free T4 readings and not a TSH seen in isolation.

I'm sorry you having to put up with this - is a referral to an endo out of the question or maybe another doctor better informed ?

[Kimkat in reply to pennyannie]

Thank you , I’ve just contacted TUK for a list of private endos. The endo that discharged me a couple of years ago is still at my local hospital and he also operates from the Spire in my area so it would be a waste of time going to him. I asked too many questions and also questioned his logic on one occassion, he did get very uptight with me and said that he thought there was no need for me to be on his lists anymore and so discharged me.

[pennyannie in reply to Kimkat]

Well hopefully you can find some one else - just remember that now - one good thing to come out of the last few years is that video consults are still ' a thing ' - so distance need not be the issue.

Your ' old ' endo could have been constrained by ICB/CCG rules when working within the system, wearing his NHS hat and doing the 'day ' job -

and likely prescribes T3 and has a totally different narrative when working privately as otherwise who would see him more than once - unless he is a one trick pony - not that I'm suggesting you pay to see him - but it just makes a mockery of everything - and one looses total respect.

[Kimkat]

I didn’t think about the constraints with the NHS but when I asked him about my vits he said that I should leave that to him and not to get involved in that side of things. I was quite obviously low in ferritin and asked if in his opinion I was converting well, he couldn’t wait to get me off the phone. He also commented that I should stay off “Dr Google “

[pennyannie]

How patronising of him :

[Kimkat in reply to pennyannie]

Yes I did say that I thought he was being a little patronising and his answer was, no I’m just letting you know how it is. My husband sat in on the conversation and I thought he was going to blow a gasket.

[FancyPants54 in reply to Kimkat]

Why didn't he? That was what he was there for surely? To advocate for you?

You have a numpty doctor. You will perhaps need to buy some Levo to keep you going while you get it sorted out. Don't go backwards, it's horrible.

[Kimkat in reply to FancyPants54]

I’ve got plenty of Levo stored at the moment. The person I was referring to above was actually my endocrinologist not my gp. He has now discharged me from his clinic, he obviously didn’t like me asking so many questions.

[serenfach]

"he said that I should leave that to him and not to get involved in that side of things". It is not his body! The insufferable (insert swear word of your choice here).

The NICE guidelines say to test for both T3 and T4 if the TSH is below range. Ask him why the practice decided to ignore the guidelines.

Just refuse the change, Tell him you want to feel well and why is he trying to make you ill again? If he comes out with the stuff about bones and hearts, tell him the research now shows a low TSH does not affect bones and hearts, but a low T3 does.

If he has already changed the prescription, write or phone the practice manager and complain.

[Kimkat in reply to serenfach]

I have a telephone spot with him in the morning. I’m kind of in the mind to go along with his change, then I can let him know how crap I feel but if I’m honest I don’t really want to get like that again. I’m going to sit down after dinner and plough through the list of private endo lists I have received from TUK and see which is best for me.

[pennyannie in reply to Kimkat]

Sorry to butt in but he is not interested in how crap you will become - and why do this to yourself - does he care - no:

He is just looking at the TSH and following the guidelines that are not fit for purpose and covering his back:

There are no special guidelines, irrespective of how you became hypothyroid -

We are all lumped together -

those with a thyroid - those without a thyroid and those who drank RAI -

and it's really simply with the TSH being the gold standard measure of thyroid function - or not !!

[Kimkat in reply to pennyannie]

Yes you’re absolutely right but I wanted to prove him wrong I suppose, thank you for your concern 🙂 I probably won’t go down that road, I’ve got loads of Levo stored away 😁

[FancyPants54 in reply to Kimkat]

Oh good (about the Levo). Don't do that to "prove" anything to him. He still won't listen and it could take you many months to recover from the experiment. Out of interest, what was your last FT3 and FT4 readings when you tested yourself?

[serenfach]

I know what you mean, but he would not care if you died!

Lie - he has lied to you so return the favour:-

"Thank you Endo, I followed your advice, but after 5 weeks I was nearly bed bound, so I reverted to my previous doses. I am, of course, still struggling to get back to where I was when I spoke to you - I never want to feel that ill again. I am too ill to drive at the moment, but will have a further blood test when I feel well enough to leave the house"

Then notice his lack of sympathy.

Sending a hug.

[Kimkat in reply to serenfach]

Thank you. If I’m honest he’s given me a complete check, I had one lot of full bloods done, X-rays on my shoulder and chest and he did agree with my dosage at first, so this text from him came out of the blue and really surprised me. I should have had a phone appt with him today but he’s off ill , so I have decided to stick to my original dosage and see what happens on my next bloods. I was started on statins a month ago and they really knocked me sideways, with muscle pain, so he’s given me a different one to try, so I can’t see the point in reducing my Levo anyway until I see how I am with them, I don’t want to feel doubly ill.

[Benjipuss in reply to Kimkat]

I’m a newbie here and know very little but I have seen information on the forum that says you might not want to take statins if you’re hypothyroid as it can lead to muscle issues and that cholesterol issues may settle when thyroxine dose is correct. I’m sure someone more knowledgeable than I can give more info about this

[Kimkat in reply to Benjipuss]

Yes I’ve already been taken off one and I have recently started on a different one that, according to the pharmacist, is more tolerable for most people. I’ve been on it for 2 days and so far so good but we shall see. I did notice on the accompanying information sheet that comes with all meds that you should mention if you are hypothyroid to your gp so I’ll say something to him on my next call.

[Benjipuss in reply to Kimkat]

Hope all continues well

[FancyPants54 in reply to Kimkat]

If your cholesterol is higher than it might be, then you probably need more thyroid hormone. They used to use the cholesterol level to help diagnose hypothyroidism before the TSH test.

[Kimkat in reply to FancyPants54]

Yes my argument exactly, so I can’t understand why on earth the gp wants to reduce my Levo

[FancyPants54 in reply to Kimkat]

Because he doesn't know about the cholesterol link, because he hasn't read up about hypothyroidism over what he was briefly taught and that would not have included much work with symptoms other than the blindingly obvious ones (if we were lucky!).