My GP said my FT4 was in range so I don’t need a dose increase

[OudMood]

Just got off the phone with my GP about a referral… then she asked if I had recent Thyroid results and I did!

TSH 5.19 [0.27-4.2]

FT4 14.9 [12-22]

FT3 5.9 [3.1-6.8]

So I slipped in the dose increase question… and lead the conversation with “I need to optimise TSH for pregnancy” as then the target lowers down to 2, rather than being “in range”.

We had a conversation about guidelines and full replacement dose per weight, percentage through range, etc.

I also made a clear point that all my symptoms were still there.

And then she said that although my ( “elephant” 🤣🤭 - this is my hyperbole for giggles) 50mcg dose didn’t do ANYTHING to the TSH my FT4 is in range… so she doesn’t feel comfortable increasing dose… despite TSH needs to come down for pregnancy 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

Because my diabetes Endo said no to an earlier dose increase on weight, but to base it in test results…

So she will email the Endo again to ask for an OK.

Now I have a worry the Endo may say no.

I don’t really know what to do….? It’s like they are blind or something?

She clearly stated TSH needs to come down, but also.. not because FT4 is ok? (I know FT4 is basically useless anyways in that sense… she didn’t even wanna know the FT3).

What’s my next step??? (Can’t afford private Endo)

I think all of the GPs that will see the communications with the Endo may feel uncomfortable about dose increases in the future too… and for full disclosure… I have always hated this Endo as we always had disagreements as she misrepresents facts/conversations in her letters 😒😒😒😒 😡😡😡

[tattybogle]

i think even a most narrow minded endo , who openly admitted to hating your guts .. would still 'ok' an increase when the TSH is clearly still over the 'normal' reference range (let alone over the 'pregnancy' reference range )

Most endo's / and GP's will pay more attention to TSH than any other result ... but GP is not confident what to do because fT4 is fairly high in range..... So i'd be very surprised if Endo said no increase allowed when TSH is still over 5 .

(i'm assuming you tested correctly ie. 24 hrs from last dose levo . ?.... if you tested shortly after taking levo dose, then that would explain why fT4 seems high ish )

[OudMood in reply to tattybogle]

I really hope you’re right.. 😭

Yes, I’ve tested 8am with last dose 24hrs prior.

My FT4 has never been under range.. even prior to treatment was 14.2 so the 50mcg have raised it by 0.7pmol/L

[nellie237 in reply to tattybogle]

"but GP is not confident what to do because fT4 is fairly high in range". You meant FT3 tattybogle.

[Edit] This thread is quite interesting ie What will they do with this............ignore the FT3 because they don't usually know what the FT3 is?

[tattybogle in reply to nellie237]

well spotted thankyou nellie x

actually i did mean fT4, but i'd read the range wrong .. i thought it was the [7-14/15 ish ] range... since i now see it's [12-22] . and T4 is actually fairly low in range , then there is even less reason for anyone to refuse an increase... dunno what this GP is playing at saying no, when TSH is still over 5..... ? must just wan't their hand held by an endo .

[OudMood in reply to tattybogle]

Very likely…It’s like double checking in a calculator that 2+2 really equals 4 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

[nellie237 in reply to tattybogle]

I did wonder if the confusion was the range, but thought nah. 😊

[OudMood in reply to nellie237]

Nope…. I did mean the FT4 actually in my post.She literally ignored the fact I mentioned FT3 as she didn’t wanna hear the actual result.

She wrote the numbers down over the phone, so I know she hasn’t seen the FT3 🤭🤭🤭🤭🤭

[nellie237 in reply to OudMood]

I thought it was odd that they'd maybe taken notice of it............blame tatty for confusing me (it doesn't take much).😊

Well, Good grief...... there's no excuse for not increasing your dose. 🥴

My daughter is T1 + Hashi's. She'd been borderline for years........at her 1st Endo appointment after being started on Levo, the Endo upped her dose drastically. I'm going to keep my fingers crossed for you, that you get a response soon, and don't have to keep fighting for every dose increase.

Let us know how it goes.

[OudMood in reply to nellie237]

Nellie so happy for your daughter! It also feels nice to meet another “alike” 🤭

I had a telephone appt with my usually VERY good Endo (NOT the one in the post, that’s my old Endo) but he seemed like he was having a bad day and told me I’d need to go to GP for management when I asked if he could be handling the Thyroid too… 🤷🏼‍♀️

They all know I’m quite keen on trying to conceive as I’ve been for long and usually my a1c was never good enough, but now that that’s been handled, this cropped up 😒😒😒

If I have to fight all dose increases like this it may take me a year till we get close to a replacement dose that lowers my TSH to 1 (without telling them… I’d really like to be around 1 or less, as 2-2.5 seems quite high)

Plus there will be the pregnancy increases too.

Good grief 😫😤

[nellie237 in reply to OudMood]

So, basically.......the Endo thinks the GP should manage your thyroid, but the GP feels out of depth because your a1c wasn't historically great. Doesn't help you when you clearly need an increase does it?

I think your GP needs to appreciate that it is because of you that your a1c is good, and that it is down to you making decisions on adjustments every day ('cos I'm sure you're not being micro-managed by an Endo) There is not a valid reason for with-holding the increase, when the only thing with-holding it will do is keep/make you unwell, and less and less able to control everything else. In effect with-holding is more detrimental to you, than it would be for me. I'm so sorry that you are having to deal with this cr@p.

[OudMood in reply to nellie237]

Yea basically the GP wants the Endo to hold their hand for basically no reason.I honestly just avoid them for anything diabetes related as my knowledge of dealing with it for 17yrs daily fat outweighs their 5 lectures in uni 🤣🤭

I became somewhat snappy when I hear BS 🤭

My Endo is lovely and supports me with DIY looping too (which was one of the biggest points of contention with my previous Endo..)

I am not scared of going the self medicating route tbh like others suggested, but I want to battle it out with the GP first as i honestly feel like it’s my right as a tax paying citizen.

Plus that might just make it easier down the line for others. 🥰

[nellie237 in reply to OudMood]

Yes, Granny sucking eggs comes to mind a lot when dealing with medics and diabetes.

I agree you shouldn't have to self medicate ........and then if you do, you've got to consider what might happen if you go into hospital as an emergency...in a pandemic.....

[Lalatoot]

Some folks on here buy levo from abroad and top up by themselves If you think of going down this route at any time put up a post asking for sources.

[OudMood in reply to Lalatoot]

That might be something to consider a bit down the line…I hope I can have it on the NHS first so I don’t need to worry about quality etc.. and self funding..

I already self fund almost £200 per month worth of diabetes supplies 😫😫😫

[SlowDragon Administrator]

What are your most recent vitamin results

Vitamin D, folate, ferritin and B12

Have you had cholesterol levels tested

High cholesterol is linked to being hypothyroid

Always test thyroid levels early morning, before 9am and last dose levothyroxine 24 hours before test

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

[OudMood in reply to SlowDragon]

Will be doing vitamin testing on NHS shortly..

It seems like the GP link isn’t working 😕

I may try to bring the rest of them with me in the next visit.

Have you seen GPs responsive to info that doesn’t specifically come from NICE?

[SlowDragon Administrator in reply to OudMood]

That’s annoying GP online has cut access to articles

Can you afford to pay to see thyroid specialist endocrinologist privately £250

They would write to GP to instruct that TSH should be around/under 1

Roughly where in U.K. are you

Some endocrinologist on list are still doing consultations on zoom

Distance no object

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

[e-mail]

Presumably you have Type one diabetes?

Have you had coeliac blood test done

[SeasideSusie Remembering]

Why is TSH SO important when it's low and you have to adjust dose to get it into range but over range TSH is ignored 🤷‍♀️

[OudMood in reply to SeasideSusie]

I honestly have no clue and it’s so annoying.

[OudMood]

Slightly excited as I’ve made an appt with a different GP (in reality to discuss the Endo response to the dose increase request), but since it didn’t arrive… I sort of said that I want a dose increase and that my labs prove I need it 🤭

She verified I had labs done (luckily previous GP just wrote down the results in her notes 📝 soste was ok with it!)

And granted me a dose increase! Yay! 🤭🤭

So I’m now at 75mcg 🙌🙌🙌🙌

[MikeM46]

Actually it’s your T4 supply to the developing baby from the earliest stages that’s important. TSH is just the navigational aid that works for most but not all.

Good job you’ve achieved some increase … also need relatively frequent monitoring to ensure your FT4 level keeps up particularly through the first two trimesters.

Wasn’t aware copy pasting weblinks is not facilitated on HU so have typed the relevant NICE CKS series advice in below. When NICE set about starting up NG145 it was decided to pass the pregnancy aspect over to RCOG. But their guidance is still in draft … C**** got in the way! Oh my is that guidance so needed … your first GP is by no means the first to simply not have a clue as to how & why this is supposed to work 😤

cks.nice.org.uk/topics/hypo...

I’ve not checked myself but understand there’s also useful

Info over on the BTF site!