Hey everybody! I’ve recently joined this group and so relieved because I feel like I’ve been going mad these past few months.
I was diagnosed in early December last year.
TSH at 12 and with antibodies. They didn’t test anything else thyroid related. Told I was sub clinical and I can start on levothyroxine if I want.
I did as I was falling asleep uncontrollably really early and had the worst stomach problems and diarrhoea along with other symptoms. (They had also took a few stool samples and tested for diabetes but came back normal)
I was on 25mcg to start. Increased to 50mcg in feb and only this week been increased to 75mcg. Before he increased my dose he asked if I’d been taking it everyday and correctly. I assured him yes and felt quite offended the way he had asked it which really threw me off.
I’ve been writing my symptoms down but the main issue is defo my digestive system. I know I’m not yet on a stable dose and it might possibly resolve when I am?
My older sister who is 28 got diagnosed recently with a different doc and she’s awaiting her second blood test, this time is tsh and coeliac. After her first test she got put straight on 100mcg of levo. (I’ve asked her to get her results emailed as she doesn’t know where her tsh was at) I’m yet to get tested for coeliac and going to ask my doc next week when I have a scheduled call. I’ve only just started cutting out gluten this week, a few days back, still having tummy issues so unsure if it’s too early to tell?
I don’t have a private doc, this is with nhs and I’ve seen posts that suggest they won’t test everything.
So what do you guys think I should prioritise asking for?
Will they do a full thyroid panel?
Or vit levels?
Or anything that the digestive issues suggest I should get tested first?
Thank you!
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ComfyLotus
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Your GP will test TSH - becuase that's what he has been told to do - and to be fair it's a useful primary diagnosis tool ... but far too many are TSH obsessed and won't / don't look at your actual thyroid hormones, and once you're on levo these are more important.
A full set of tests would be: TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. You don't need to re-test antibodies if they have already been high (and therefore shown you have Hashi's). You're right that the NHS won't routinely test all of these - but I've had some success with my GP by saying that these are the tests recommended by Thyroid UK. It's (bizarrely) quite common for the lab not to do the tests the GP asks for if they don't want to - so your GP asking is no guarantee that you will get them done. The nutrients are important as you need these to be good to feel properly well - but your GP will not test these without a prod. Vit D is the hardest test to get - the GP will have to answer additional questions for the lab to do these (my GP fudged this) - but last time I asked my consultant endo to test vit D the lab point-blank refused.
Really important to have an early morning, fasting blood test (when TSH is highest) - and leave 24 hours from your previous dose of levo (take the next one straight afterwards). And to get the best from your levo you should always take it on an empty stomach, just with water - 2 hours after or 1 hour before any other food or drink and well away from other supplements. Doesn't matter if you take it first thing, last thing or split the dose.
If you get the next results (and related lab ranges which vary from lab to lab) the lovely people here will help you to understand them - but basically you want TSH low: less than 2 (and prob less than 1); both frees nice and high in range; nutrients at least half-way through range and vit D in 3 figures. Good luck x
the ' have you been taking the tablets ?' question is unfortunately quite normal .... so don't worry it's nothing personal. But i agree it feels a bit insulting.
It is just the first question the computer prompts them to ask if they are 'confused' about some thyroid results.
However, if you started with TSH of 12 (which is actually worse than 'subclinical',
technically according to NHS 'subclinical' is 'TSH over range but under 10 ! with fT4 still within range' ) then a dose of just 50mcg that didn't get your TSH back to normal and keep it there is not confusing at all. it's simply not a big enough dose,
50 mcg is just the usual starting dose , it should then be increased in 25mcg increments until TSH is around 1
Some newer guidelines do suggest that starting at something like the full replacement dose
of around 100mcg is fine to do , but some people might find this a bit of a shock to the system.
Ah that’s reassuring to know. He was tiptoeing round the question at first but I couldn’t make out why! - diff doc to the one that said 12 was subclinical. At the time I didn’t know but reading up I have found this out! Starting at 25mcg I think it just feels like it’s taking so long!!
Learning to be patient, soak in all of the info from this amazing group and ask the docs the right things!
personally, i think starting at 25mcg is ridiculous .... unless you are a very elderly. frail. 'mouse sized' person, with a heart problem ?
Welcome to the uncomfortable world of "knowing more that your Doctor"
Still , it could be worse . someone came her a few day's ago having been told TSH>100 fT4 AND fT3 both well below range was 'bordeline' and to 'watch and wait'... we sent her to A&E
p.s if you are going to ask for a coeliac test, then you need to still be consistently eating gluten for it. or you could just try doing without and see if it improves how you feel, because an awful lot of Autoimmune Hypothyroid people who don't actually have 'proper' coeliac still find being gluten free helpful.
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