I post in the hopes someone can help me, i was initially diagnosed with Graves disease in 2007 after the birth of my daughter but suspect I had had issues prior to that. I was treated with carbimazile for 2 years and went into remission. In 2015 I collapsed and was taken to A&E with tachycardia, violent shaking, which resolved itself and nothing was found in blood tests but I felt terrible for about 6 weeks after: blurry vision, exhaustion, dizzy. A bit like being drunk without the joy of the alcohol. This happened on a number of occasions over the next 6 months until a really bad episode but me back in A&E and I had a retinal aneurysm. My blood tests then showed I was very overactive and they treated with beta blockers and carbimazole and tried to stabilise me with little success. I had a (near) total thyroidectomy in Jan 2019 ( I had 2 large nodules which were benign but they couldn’t get it all out due to potential nerve damage) they took a baseline thyroglobulin test as my father died from thyroid cancer . They started me on 100mcg a day of Levo then reduced it to 75mcg when I was overactive again. I then felt well enough to start a new job and was happy for about 8 months then started to feel lousy again. They raised my levo to alternate days of 75 and 100 mcg then I had another collapse at work in July 2020 so went back to gp. They increased my HRT in case symptoms were related to that and I spent 2 months feeling like I was dying: pins and needles through whole body, massive anxiety. In September like someone flicked a switch I felt a bit better so went back to work and managed 6 Weeks before another collapse in October 2020 I now have felt permanently in the ‘drunk but not drunk’ state with marked palpitations since October. Had particularly bad episode on nye and back to A&E
I have appointment with endocrine specialist nurse for the 19th jan but they are keen to sing me off as they don’t think it is a thyroid issue???
Most recent tests : Nov 2020
Tsh 0.895 range 0.570-3.600
T4 14.2 Range 7.9-14
T3 not given results for??? But feb 2020 5.7 range 3.1-6.8
All help gratefully received
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Beckxbrown
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First step is to get FULL Thyroid and vitamin testing
What vitamin supplements are you currently taking, if any?
Are you on strictly gluten free diet or dairy free diet?
Do you always get same brand of levothyroxine
Which brand
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have poor conversion of Ft4 to Ft3
Ask GP to test vitamin levels NOW
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I too have Graves Disease but had RAI ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.
I was only ever treated on the NHS with T4 Levothyroxine at 100/125 mcg daily. and it would seem dosed and monitored on just a yearly TSH blood test result and my dose adjusted down when I failed to score a TSH level higher than 0.01. when on 125mcg daily.
I felt better on the higher dose but it would be routinely adjusted down and I was offered antidepressants as a sort of consolation prize, and lead to believe " it was all in my head ".
I became very unwell some 7/8 years after RAI and finding no resolution through the conventional channels found myself reading Elaine Moore's first book - Graves Disease - A Practical Guide - and learnt all of my current symptoms were well documented and that Graves isn't necessarily " sorted " by having had the recommended treatment.
I purchased a second copy of the book for my doctor, but she declined to take it.
I then found myself on this amazing forum and started to read on the Thyroid UK website.
I also purchased a book written by a doctor who has hypothyroidism, Barry Durrant-Peatfield " Your Thyroid and How To Keep It Healthy " available from Thyroid UK , and so my recovery started.
I was refused both Natural Desiccated and a trial of T3 through the NHS and so took matters into my hands in around 2018 and am much improved, but am having to source my own thyroid hormone medication.
Some people can get by on T4 only : some people simply stop converting the T4 into T3 at some point in time, and some people need a little bit of T3- Liothyronine along with their T4 to balance these 2 essential, vital hormones, bring them both into balance and to a high enough level that the patient finds acceptable.
Your own ability to convert T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels so these need to be tested as you need good levels in all - just being in a NHS range somewhere, when hypothyroid, isn't ok for us.
T3 is the active hormone that the body runs on and is said to be about 4 times more powerful than T4 - and I read the average persons uses about 50 T3 daily, just to function.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2, and calcitonin plus a measurable amount of T3 and T4 said to be roughly 10 T3 + 100 T4 : so you will see even with optimal conversion you have lost your thyroid's production of T3 which equates to about 20% of your overall wellbeing and overtime this may well cause additional health issues.
In the first instance you need to arrange a full thyroid blood test as already detailed.
Post back on there the results and ranges and you will be advised as to what it all means and what the next best steps are for you continue your recovery back to better health.
hi Beckxbrown after reading your post I think your problems are due to hormones and in particular estrogen from your hrt or if your hrt is only progesterone then it may be that
after giving birth progesterone drops dramatically giving rise to estrogen dominence ( progesterone moderates estrogen) without progesterone estrogen is excititory - thats why after giving birth some women develop hashimotos (an auto immune disorder) or even ppp you went into remission from graves presumebly because your ovaries started to make more progesterone which balanced out the high estrogen
I suggest you stop your hrt gradually and see how you get on
I thought that simply supplementing with natural progesterone could be the answer to hashimotos but since seeing a video on here I am reluctant to advise this
estrogen dominence seems to be the cause of many autoimmine disorders
flaxseed oil is good bc it promotes progesterone
I think if you settle your hormones you could then sort your thyroid problems
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