Hi just after some help please. I have had suppressed TSH levels since 2010, apart from a blip in 2014 when it was 2 pmol/l. (range is 0.35 to 4.7. ). My level has been consistently low at 0.02 pmol/l from 2018 to 2024. My T4 has been in range over the years ( 7.8 to 21) however my T3 was raised at 6.7 ( range 3.8 to 6 ) when bloods were taken in Nov 2023. I saw an endocrinologist in Jan 24 who prescribed 5mg of Carbimazole with suspected Graves. I had a thyrotropin receptor ab test, level was < 0.8 . I have also had a thyroid scan but I've not had the results yet and I am chasing this. I have not had a follow-up appointment with the endo as yet.! Bloods were taken Feb after 5mg dose readings: TSH 0.02 ( no change) T4, 14 ( down 2 points) T3, 5.4 ( down 1.3). So endo ( via gp) recommend increase to 10mg. My Bloods in May, after increase to 10mg showed, TSH, 0.02 ( no change) T4, 8.7 ( down a further 4.3 so near lower range now) T3, 4.7 ( down .7 ) My GP ( via a text message! I have never had a face to face with him) has now suggested another increase in dose of 5mg so 15 mg a day, ( not agreed with endo as yet!) Gp is saying the aim is to get my TSH level back to a detectable range but I'm concerned that as my T4 and T3 are back in range, having come down considerably on the 10mg that a further increase would take my levels very low in range. My TSH has been suppressed for years, can they, will they come back? Also I read the threads here and looks like it would be good to get vitamin levels tested? I am not happy increasing my dose until the endo approves this. I would appreciate your help with this so I can contact my GP with my concerns. My main symptom is short fuse and feeling down. Thanks for your help.
Suspected Graves: Hi just after some help please... - Thyroid UK
Suspected Graves
Hello Gutsy :
Do you have the Thyrotropin Receptor antibody range there please ?
0.8 ' looks ' low so maybe not a positive for Graves Disease and maybe why you haven't heard back with any evidence of what you are dealing with - maybe the scan shows something ?
All the Anti Thyroid drug Carbimazole does - is semi-block your own new daily thyroid hormone production while tests are run and a diagnosis made -
years ago, in my day, the AT drug wasn't prescribed until there was a diagnosis -
but I think the system is so backed up, that as a safe guard measure the AT drug is first prescribed - to ' buy some time ' for the medical investigations to be undertaken -
Your TSH low - with a T4 in range and a T3 just over range in November 2023 and why you were prescribed an Anti Thyroid drug to semi-block your new daily own thyroid hormone production as a T3 rising higher and higher - as in Graves - can be life threatening
This thinking to get your TSH to move at the expense of your health seems a little strange especially as you say your TSH has been suppressed for years -
I wonder what the blip was that returned a TSH of 2 ?
- and now your T3 and T4 levels are too low to function on and presume you feel exhausted and very uncomfortable and increasing the AT drug will lower these low levels further !!
If with an AI disease such as Graves - the TSH is a very unreliable measure of anything and very much under the control of your immune system and not the hypothalamus / pituitary / thyroid feedback system and if with Graves it's simply a waiting game until this phase of immune system activity passes and track and monitor on the T3 and T4 and try and maintain levels around mid way through the ranges.
Looking back I see you posted on here around 6 years ago - so do you have an existing thyroid health issue ?
Yes - when metabolism is running too fast as in hyper type symptoms or too slow as in hypo type symptoms the body struggled to extract key nutrients through food no matter how well and clean you eat and we need a strong core strength to replenish, repair and maintain all the body 's functions.
Also since most forum members tend to be hypothyroid and taking T4 thyroid hormone replacement we know that this medication needs a strong core strength of ferritin, folate, B12 and vitamin D to support and help utilise and convert the T4 in the body into T3 which is the active hormone that runs the body.
Thanks for your swift response pennyannie. Sorry no I don't have the range for the Trab ab. The result was in a letter from the endo dated 21 January, however, I didn't recieve this until late Feb. Not much info in the letter other than the result value of < 0.8 along with my thyroid values. Don't know if significant but the Abnormality column states ' not recorded' were as the tsh column reads low, t3 high, t4 normal!! Does this mean no abnormality? However, Endo wrote: I have recieved your thyroid function test today which is in keeping with an overactive thyroid. Please continue with 5mg and I will organise a scan of your thyroid gland. I had the scan 22 March but no feedback as yet. However, coincidentally, I have just today recieved an appointment for the 22 August. I am hoping that he, endo, picks up the email from my GP where he , the GP is suggesting I up my dose again after my May bloods. I am concerned as this was suggested by my gp without sight of my scan results and a definitive diagnosis ( if this is even possible) I know he hadnt seen the scan results because I had to chase them myself with the endo department and they had to put them under the consultants nose. You ask about the blip in my TSH in 2014? Sorry I have no idea. I've only had the NHS app for a couple of years and only just looked more closely since my diagnosis, so I wasnt aware. again, my activity on this forum 6 years ago? Not sure? I do have type 2 diabetes ( in remission) diagnosed 18 years ago. No other thyroid issues other than knowing for some years that I was borderline hyper. I would have been looking to understand the condition, symptoms etc. As mentioned, I am just concerned I become too medicated as I am coming to understand there is 'fine tuning' needed. I am hoping the endo now sends a report to my gp re my scan results giving his opinion on the meds situation. I think I will stay on10 mg dose and let me gp know my reasons. Thanks for your help. I am finding this all so confusing.
Well it seems you are now being treated as having Graves Disease -
though your blood test readings not as high as we generally see -
as with Graves the T3 and or T4 are generally well up at double/treble the top of the range with a TSH always low / suppressed at around at 0.01/0.02.
So some years ago you were told you were borderline ' hyper ' but no treatment was offered and if this were Graves then - I'm sure treatment with an AT drug would have been commenced as Graves is said to be life threatening if not treated.
I wonder if this was actually Hashimoto's AI thyroid disease - do you remember and antibodies being run TPO / TgAB's - have you experienced ' swings ' in symptoms causing hyper episodes that have resolved by themselves over these years that left you feeling more hypo than hyper ?
What symptoms have you been tolerating and has the AT drug offered relief - have you ever been aware of a fine tremor on your middle finger ?
Maybe the scan will show something like a nodule as that would fit more with your T3 and T4 readings. ?
So. I'm unsure - as the range of the TRab - the deciding factor - not available - does the letter say that 0.80 is positive and that you have Graves Disease ?
We do now have some research you might like to have :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
All things Graves Disease - elaine-moore.com
I was diagnosed Graves and had RAI thyroid ablation in 2005 - a treatment I deeply regret but didn't know any better and just followed what mainstream medical suggested -
I was well on the Carbimazole but told it was too dangerous to stay on long term and that RAI the safer option - I now self medicate and buy my own thyroid hormone replacement as treatment options through the NHS have been withdrawn and it has become something of a post code lottery if the cheapest option T4 - Levothyroxine - doesn't restore one's health and well being, and you can't afford to go private.
You wrote on here 6 years ago about making Kefir ?
If you press on the Profile icon on this page - alongside the My Hub-Chat-Post and Alert icons - it takes you to all you have ever written on this forum and all your replies.
If you press on my icon which is alongside anything I have written this takes you to my Profile page and all I've written on this patient to patient forum.
Hi again, pennyannie. Yes I did post about my Kafir making, tbh I'd forgotten! Perhaps that is how I got started with health unlocked. I'm a great believer in gut brain health connections. I've only ever had the one antibody test during the years. The usual conversation with various gp's over the years has been " you are borderline Hyperthyroid, but let's wait and see." Looking at my records on the NHS app, my T3 level has only been tested about 4 or 5 times over 15 years. November 2023 was the only time it had been raised ( or at least recorded as being) I have not noticed any trembling in my hands. I am not aware of any related symptoms other than suffering anxiety and depression over the years. As mentioned, I was taking low dose antidepressant for years. I stopped these about a year to 18 months ago. I have thinning hair, but again this is not a new thing. I have not had a definitive answer as to what my diagnosis is. I saw the endo in January and on examination he reported that I was completely asymptomatic and clinically euthyroid. He ordered the antibody test and thyroid scan. He wrote to me ( Jan) to say the results of the antibody was in "keeping" of an overactive thyroid. I have not had Graves, or any other diagnosis. I presume it's positive, hard to know without range. I do not know the results of the scan as yet. However, I do know that he has only just seen it himself within the last day as I had to get his secretary to chase it. I have an appointment now for August. Just got that via NHS app today. My main concern is that if I increase my carbimazole ( as suggested by my GP a couple of days ago) by a further 5mg taking this to15mg per day, my T4 and T3 levels will drop too low, if not already there. Thank you for your help with this I really appreciate it
Yes - I understand and there is no need to increase your AT medication -
your T3 and T4 are in the range and that's fine -
your TSH may never recover - and the idea is to improve patient health -
and this will not happen chasing a TSH at the expense of lowering T3 and T4 readings further.
Thank you for this. These are my thoughts too. I will stick with the 10mg dose as decided and wait for the endo appointment. I am also going to ask my GP for copy of any correspondence with regard to my thyroid scan results and also my Dexa scan. I thank you again and will update you when (if) I find out more.
GP is going by TSH. Once FT4 & FT3 is in range & you feel well you should maintain carbimazole dose. Lowering FT4 & FT3 further to raise TSH will cause hypo symptoms.
Yes ideally the TSH would be in range, but when the TSH stops reflecting low levels what’s the GP planning to do? Keep you at prolonged under range levels in the hope TSH rises into range eventually?
If your managing on 10mg try to stay on that dose. If that too high you can always alternate between 10 - 5mg daily. I was on this dose for many years. Or split the pills so you take 7.5mg per day.
Thank you PurpleNails Yes this is exactly my thoughts. Even on 5mg my t3 came down within range 5.4 ( range : 3.8 to 6 ) and my T4 was down to 14 ( range: 7.8 to 21) after 10mg T3 is now 4.7 and T4 is 8.7..so my thoughts are if I increase the dose again by 5mg or indeed 50% ! I could end up with hypo symptoms. I am not happy doing this. I presume you can see my reply to penny on the forum? I have wondered what pushed my t3 level up? I have recently lost 10kg in weight to bring my type 2 into remission. I did this by low carbs. I was eating lots of iodine foods, ie: spinach, cottage cheese etc? Do you think this could have pushed an already weak thyroid out of sorts? Just grasping at straws really. Can I ask, are you still managing your symptoms? I'm not really sure what symptoms I have other than extreme irritability ( poor hubby) and feeling tired. I also have low mood, I did take antidepressants for years. Wonder if this could have been thyroid related all along? I think as mentioned to pennyannie I will stay on the 10 mg dose. I have endo appointment in August, which is a long time to be over medicating ( in my opinion) thanks for your help. I don't feel so on my own now.
Your history has similarities to my own. I had low TSH years then FT3 became elevated & FT4 borderline high. My Trab was 0.5 (>1) so negative for given lab range. Ultrasound showed nodule & uptake scan confirmed hyper functioning.
!Obtain copy of any scan report!
Nodules tend to be T3 driven, 10% of Graves also have disproportionately high FT3.
Graves tends to occur suddenly & severely eg 3x normal thyroid level seemingly occurring overnight, nodules tend to elevate gradually.
I was also diagnosed type 2 within year of hyper & low carb got my HBa1c to normal levels.
Higher thyroid levels contributes to higher blood glucose.
I started on 20mg carbimazole had many tweaks to dose, got down to 5mg. Kept being switched between 5 & 10. I suggested alternating days and was on that for years. Recently had to increase again ☹️
Have you had any changes to activity levels introduced any supplements ? Dietary iodine might have had an effect on thyroid.
Hi again, no I've not introduced any supplements, appart from recent probiotics but I'm pretty rubbish at taking stuff, I take for a couple of weeks tops. As mentioned the only thing I was doing was a low carb diet which lasted about 6 months. I lost approx 11 kg which, like yourself, brought my hba1c right down. As for exercise, we have a 18 month old doggie who gets lots of walks but I walked anyway. I didn't goto the GP with any symptoms of hyperthyroidism it was spotted by GP via routine bloods. They arranged the endo appointment were I was labelled as asymptomatic and clinically euthyroid with no signs of goitre. Suspected Subclinical hyperthyroidism. To be honest I probably feel worse since the meds. Maybe this is because I look for symptoms now? I feel tired but do sleep. I've notice more vivid dreams. I am increasingly 'tetchy' and do feel mildly depressed. I will contact the GP and ask for a copy of my scan and the consultants notes. Thanks for your help with this. Great to speak to someone who can relate.
Hi again. A quick update, I've just today recieved an appointment for a thyroid ultrasound in a months time. I'm presuming that something was highlighted on the iodine uptake scan, possibly nodules?? I've not had the results of my scan from either my GP or endo office. It's the lack of communication that's stressful. When I rang the Endo number to chase last week the recorded message said results are not given via the telephone. I did speak with someone who told me the results were in the system but the Endo had not reviewed them. I'm presuming he has now hence the Ultrasound appointment. Thanks for listening
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