I'm New and after some advice with regards to T... - Thyroid UK

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I'm New and after some advice with regards to T3 treatment

Wisley profile image
5 Replies

Last August I had a hemi-thyroidectomy for a large goitre, since then I have not been feeling at all well. I kept returning to my GP as I spent weeks laid up feeling so tired and barely able to climb the stairs without having to lie down and was permanently cold. I then started with a gluten intolerance. After three months of backwards and forwards of 'normal range' test results I eventually convinced them that I needed to be put thyroxine as my TSH was at 4.480. When it was tested long before I was dignosed with a goitre it was at 1.4. I have been taking the Thyroxine for nearly ten months and feel like I am going backwards. I have been reading up and talking to my GP about T3 and even paid for a private blood test, these came back as 4.1 and yet again have been told that I am within 'normal' range. I now am suffering from migraines every five weeks, weight gain, sensitivity to cold and extreme fatigue, I have been in bed for the past three days and struggling to keep my eyes open!!!

Please can anyone let me know if they think that I am on the right track or if I am barking up the wrong tree!!

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Wisley
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SlowDragon profile image
SlowDragonAdministrator

To have a TSH that high means you are very under medicated

Dose should be increased by 25mcgs steps and retesting after 6-8 weeks. This repeated until TSH is around one (or slightly below) and FT4 towards top of range and FT3 at least half way in range

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP.

Private tests are available (1000's of us have had to do this)

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Once dose is high enough and vitamins at good levels,, then if T3 remains low it's very likely you need addition of small dose T3

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

dionne.fulcher@thyroidUK.org

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

marigold22 profile image
marigold22

I suggest you get new up to date full bloods as suggested by SlowDragon , and post them on here for interpretation. As you have had a hemi-thyroidectomy, you may well find you need T3 at least added to your T4, although my personal guess is that you would feel much better on T3 alone. But, please do get up to date blood tests and in a way, start from fresh now you have found this lovely forum

Wisley profile image
Wisley

Thank you both so much for that, I have found my latest bloods from the 30th October, which I had to pay for privately, and they were:

Free T3 4.1

TSH 0.69

Free T4 22.7

I have spoken to my GP this morning and been given a load of twaddle about every illness carries fatigue as a symptom! He has however said he will refer me to a private Endocrinologist, so fingers crossed I might get somewhere. I also have loads of reading to do, thanks again so much.

SlowDragon profile image
SlowDragonAdministrator in reply toWisley

Can you add the ranges on these results

Definitely get full testing BEFORE seeing any endo

Waste of time seeing any old endo in local area. Most are Diabetes specialists

GP won't want cost of T3 coming out of his budget, so will fight it all the way

Wisley profile image
Wisley

Sorry, of course. The ranges were:

Free T3 - 4.1 pmol/L 3.1-6.8

TSH - 0.69 mIU/L 0.27-4.20

Free T4 - 22.7 pmol/L 12.0-22.0

I have just googled the endo that he is referring me to and he is a diabetes specialist first! Will e-mail Dione from Thyroid UK for a T3 friendly one. I realise that he won't want to prescribe T3, especially with it in the news at the moment, but as with everyone else on here this is our quality of life that we are dealing with.

The hypothyroid check list was an interesting read too, there are many that I can tick off of that list!

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