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!!
Written by
Wisley
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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)
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
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
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.
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
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.
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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New here is this overactive thyroid?
I'm new here...advice on blood results please.
Goitre and antibodies but bloods all fine
Will dumping gluten reduce thyroid antibodies?
Any advice gratefully received... Could this be more than depression/anxiety?
