I am not going to rewrite my entire story as it’s in my bio, but basically I was diagnosed as hyperthyroid approx six weeks ago and commenced on 20mg Carbimazole daily. I tested positive for TPO’s but neg for TRAB. I was symptomatic of hyperthyroidism.
I have just had my bloods redone and the results are below. I am guessing my bloods indicate Hash’s rather than the original diagnosis of hyperthyroidism ? Does this mean my meds will be switched to Levothyroxine or will the Carbimazole just be stopped and see what happens? Is this swing usual from one to other?
I do have a private endo apt at end of week but keen to get advice/knowledge from anyone beforehand on here as you are all so helpful and I feel it beneficial to be forearmed for my appointment.
original results
Tsh 0.02 (ref range 0.38-5.33)
T4 18.4 (ref range 7.9- 14.4)
T3 7.5 (ref range 3.1 - 6.8 )
Latest results-
Tsh- 8.7
Free T4- 8.7 also
Free T3- 4.1
Thanks Keri 🙂
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Keri41
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Ok - are we looking at the same ranges for these new results of TSH/T3 and T4 ?
What were your TPO/Tgab and TRab readings please ?
So with TRab a negative - this is not Graves and the AT drug should not have been prescribed -
so suggest you stop the Carbimazole and let us wait and see where your normal thyroid function sits in a few weeks time.
I can't see the point of seeing an endo at the end of the week - your T3/T4 may not have fully recovered by then as it's a little bit of a wait and see now.
Hashimoto's is another Auto Immune disease whereby your immune system sets out solely attack and destroy your thyroid - and you will likely experience ' hyper type swings ' - but the T3 and T4 do not go too high and fall back down into range by themselves, without the need for any medication.
However, Inevitably when this ' swing ' swings back your thyroid is further damaged and it's ability to fully support you becomes reduced with you likely starting to suffer symptoms of hypothyroidism and ultimately being prescribed T4 - Levothyroxine - thyroid hormone replacement.
Hashimoto's sufferers can tend to have stomach issues and certain food intolerance -
so these areas are worth thinking about - get checked out for celiac - and have your core strength vitamin and minerals of ferritin, folate, B12 and vitamin D run -
as when metabolism is running too fast as in hyper or too slow as in hypo these nutrient levels can nose dive through the ranges compounding your ill health further than necessary.
Not sure if I shared this with you before - but the work and research of Dr Izabella Wentz is followed by some forum members and might just help in your understanding of Hashimoto's - thyroidpharmacist.com
P.S. Have you spoken to the doctor regarding your extremely low ferritin result -
Has / is an iron infusion been agreed and actioned ? ?
Thanks for your advice/knowledge it’s appreciated.
Yes lab ref ranges are same for both tests.
my TPO abs were 305-ref range is 0-8.9)
My Trab was less than 1 so neg as above 1.8 is positive)
I have had my iron infusion and have noticed an improvement in energy levels, however I’m still struggling with tiredness just a slightly lesser degree but I struggle especially in the mornings.
I have struggled on/off since just before my diagnosis with low white cell count- mild neutropenia and as I kept being recalled to retest levels the GP did consult endo for advice who said long as neutrophils stay above 1 not to worry, (they are 1.5 currently)and to not recheck again unless symptomatic (ulcers/sore throat etc) I do worry if this is an incidental finding and pointing to something else but again GP dismissed my pondering the need for further test.
My GP won’t test my vitamin levels despite my request as says “ likely to be low in something so to just supplement due to cost of blood tests on nhs! “ I’ve prev been B12 deficient but she wasn’t having it! I know you can get these tested privately but it’s another cost. I currently dont supplement.
Ok - well I'm sure the iron infusion takes some time to be fully utilised in the body and this must be monitored more regularly going forward.
However low white blood count and neutropenia is also linked to nutritional deficiencies - such as B12 and folate - auto immune disease and extreme fatigue a common symptom.
Can you see a different doctor within the surgery as I really do think you need to be followed up much more closely and your B12 injections re-instated.
Thinking on - with this endo appointment at the end of the week - keep it and when they apologise for you being on the wrong medication and stop the Carbimazole -
talk to them about your low white blood count and neutropenia and ask them to run the necessary blood tests for your vitamins and minerals as you do not seem able to get through to your doctor how unwell you really are ?
Say you have had to have an iron infusion and your B12 injections have stopped - and shouldn't these be followed up more closely as you can't afford to test privately ?
Hey Keri. Good news you have an appointment with an Endo, though from experience having been diagnosed with hyperthyroidism (graves disease) for almost a decade, I will say advice from one consultant to the next can vary!I have no experience with hashimotos and don't really know what it is, but would say with any issues with a thyroid to listen to what your body is telling you. Personally I managed to get my thyroid under control and now don't need any medication at all by stopping smoking, by reducing stress in my life, reducing caffeine and most crucially by reducing my level of iodine intake (thyroid basically processes iodine). The recommended daily intake of iodine is about 150micrograms according to the NHS, I was consuming 3x that in my diet, so no wonder I had problems with my thyroid. There is a lot of iodine in certain foodstuffs in the UK, including dairy. Cutting dairy out of my diet really helped me, and I was seriously ill at one point with hyperthyroidism.
Everyone is different though, and thyroid problems can take a long time to understand, but they are manageable. Good luck.
I was started on Carbimazole 30mg last September. By December I'd gone typo but was just told redude Carbimazole to 10mg. At latest bloods the Dr said its sitting stable so wait to get specialist appointment so I'm bo further on. Good luck
Thanks for reply- were u diagnosed with graves (did ur Trab antibodies come back positive) as I think that’s the confusion here as I think it’s more likely I have Hashi’s as altho I presented as hyper my Trab antibodies were negative but my TPO antibodies positive so consultant couldn’t give me a clear picture of what was going on. I’ve given up waiting for NHS to help so unfortunately had to go private, I will update after my appointment on Thurs. I’m so grateful to this forum for everyone’s compassion and knowledge. 🙂
I was only told hyperthyroidism Keri41, no mention of Graves Disease. I asked for copy of bloods but never had explanation so learnt meanings on here. My TSH went from 0.01 on 20th September to 0.94 on 27th October but not got the December results when I was told I'd gone hypo.
I'm feeling dreadful now but on 17th April TSH is 2.31
Hi Keri41, I was diagnosed with hyperthyroidism which turned out to be Graves Disease towards the end of last summer. I’m not a healthcare professional or in any way an expert on this but my layperson’s understanding about my treatment is that the Carbimazole is prescribed to block the messages going from your pituitary gland to your thyroid so that the crazy amount of thyroxine being produced and which is sending you into a state of hyperthyroidism is massively reduced. Once that’s achieved (and I guess it has been now for you, looking at your results) you’ll then be prescribed levothyroxine but you’ll stay on the carbimazole too. Then your endocrinologist will check your blood again in another six weeks or so, to see (fingers crossed) that your levels are on the right track. It might take a few tweaks to get it right and it might be that they decide to just tweak the level of carbimazole and not give you levothyroxine at all. As I say, I’m no expert! I’m on 40mg of carbimazole and 100mg of Levothyroxine. I’ll be checked again in the autumn to see whether I still have Graves Disease and if so what the next steps are. Hope this helps!
Graves is an auto immune disease and as such it is for life as there is no cure and no way of changing ones immune system :
All the AT drug does is ' buy you time ' while we wait for your immune system to calm down again and hopefully your thyroid function returns to normal function without the need for any medication.
Yes, you are on what is called Block and Replace - whereby your new own daily thyroid hormone production is fully blocked and a dose of T4 is also prescribed so your T3 and T4 levels do not fall too far through the ranges and you experience the equally disabling symptoms of hypothyroidism.
Because the sole purpose of the thyroid is to process iodine, and iodine is added to certain foodstuffs, and it's possible consuming too much iodine can cause problems with the thyroid.
No, it amazes me how many people have problems with their thyroids aren't aware of the connection with iodone. The book "The thyroid reset diet" by Christianson is worth a read tbh.
No problem. Good luck with your graves. I only just read your original post on here; I was diagnosed with graves and was on very similar medication to you for 5 years (40mg Carbimazole and 150mg levythyroxine - block and replace). After 5 years they took me off that medication, but unfortunately I relapsed after about a year. They then started to recommend I have radioactive iodine treatment which I was dead against (is radioactive treatment really a positive thing!?). It was then that I started to investigate a bit more, and found out about iodine. Since I reduced my intake of iodine in Jan 2023, my thyroid has been acting normally, and 15 months later my thyroid blood results are stabilised and have been for a while. Fingers crossed they stay that way.I'm not saying this would work for everyone, I have also made other changes to my lifestyle which might have helped, and everyone is different, but I would say it is worth looking into. Good luck.
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