Levothyroxine just not cutting it anymore - My 1st post

[Emsy2111]

I have been taking levothyroxine for 6 years now, currently 125mcg. I don't think I've been very proactive and basically have been suffering in silence a lot waiting to "just get better". I am 34 and have 4 small children. Getting through the day is a struggle and I don't even want to begin on how I feel emotionally. I used to be so active and now struggle to put one foot in front of the other. I would just like some advice on what I should try next or what do I need to ask my GP to be tested. My TSH tested 4 months ago was ideal 0.42. Last time my T4 was tested (18 months ago) it was 25.5. The other ideas I am considering is straight skipping my GP and going to a private consultant -although pricey and with blood tests as extra but this is the stage I am at; or I have just read on here that some people self medicate with T3. Any advice would be greatly appreciated...I should also mention I get 3 monthly B12 injections (not feeling that they currently help either Thanks

[SeasideSusie Remembering]

Emsy2111

The first thing to do is get a full thyroid panel, TSH alone is no good. You need

TSH

FT4

FT3

Thyroid antibodies if not tested positive previously

Vit D

Ferritin

As you're having B12 injections there's no need for B12 to be tested, but is your folate optimal at least half way through it's range?

If GP wont test all of these then you may want to do want hundreds of us here do and that is a private test with one of our recommended labs.

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

Post results, with reference ranges, when you have them and members will help.

[Emsy2111 in reply to SeasideSusie]

Thanks SeasideSusie this is just what I needed as a starting point. No GP appointment for 2 weeks though but I will go in armed with my list

[Peanut31]

Hi

SeasideSusie has given you good advice on private blood testing.

This is the first option I would do before seeing a private Endocrinologist.

Medi checks offer for an additional charge a visit to your home for blood draw, or you can visit a hospital on there books locally (normally a BMI hospital) this must all be arranged via medi checks, or some blood tests you can do yourself via a finger prick test.

Try and do your bloods as early in the morning as possible. I had a home visit a few weeks back, unfortunately it wasn’t as early as I would of liked.

Hospital blood appointments they can get you in as early as 8am.

Best Wishes

Peanut31

[Avidreader in reply to Peanut31]

My GP kindly allowed our surgery nurse to do the Medichecks blood draw 👍 for free !

[dinglebell in reply to Peanut31]

It is actually very simple to do your own blood draw. I did mine with help from someone to be a third hand and just follow the instructions. I think it is the thought of it, as I was a bit nervous before but after I’d done it what a fuss over nothing. Drink lots of water and watch your angle.

Once a nurse (oh sorry, a trained “health care professional”....) at the surgery tried for 20 mins to take my blood, then gave up. Good to see that training not going to waste. It also means you can do it whatever time suits you.

[Jodiedebs55]

Hiya

I was feeling exactly like you and I was taking 150mcg levo then reduced to 100mcg levo i was getting blood tests from my GP and he was saying results were fine and in range . I posted them on here and was advised they were not in range at all . I looked up medichecks and ordered the TSH , FT3 and FT4 test . £39. I booked an appointment with my GP he drew the blood at 8.30 ( no thyroid meds until after bloods taken ) and I went straight to the post office and sent off my sample . Easy peasy straight forward and my results were online in 3 days . I posted them on here and these lovely people told me exactly what they meant and exactly what I needed to do .. it proved the blood test results i was getting from the gp were totally inadequate and mis read results . I now take NDT which I source myself my GP is aware and doesn't have an issue with it and quite frankly I wouldn't care if he did . I hope you get the answers your looking for because I found mine right here .. ☺😁

[Emsy2111 in reply to Jodiedebs55]

2 weeks before I can even speak to my GP never mind then waiting on a slot for nurse...medichecks may be the way to go. Can you not have finger prick for these tests?

[Hidden in reply to Emsy2111]

Hi you can but you probably need a couple of vials so be prepared for a lot of blood. Personally it’s worth the extra to get it taken if you can afford it

[Avidreader]

My advice as a layman - don’t leave it any longer ! I was 24 years on Levothyroxine- didn’t realise there were alternatives- felt awful - missed out on life - just struggled to work & Function with family etc - when I got lichen planus In gums I went to dentist who said it was an autoimmune disease - THAT ! Was the trigger to discover more & that my low thyroid was probably also an autoimmune problem ! ( GP s had said I had M.E ) never equated my problems to thyroid -

I now take NDT -I get a prescription from an Endocrinologist- but the big change for me was Amy Myers Thyroid protocol too & Isabell Wentz - I was always gluten free - so the change must have been either dairy or SOY ( soy is in so much !)

Good luck - dont ignore it

[Emsy2111 in reply to Avidreader]

Glad you got sorted. Like you I'm just so fed up of life passing me by!