Hello lovelies, I got diagnosed with Hashimoto's and Graves in 2017 but had resisted treatment and Carbimazole as my thyroid always seemed to bounce back after a few days, weeks or months. However a couple of years ago it took one year for my TSH to increase from 0.005.
So on 1st August 2023 I started Carbimazole (10mg). 4 weeks after starting my T4 bloods were already back in "normal range". My observation over the last year has been that my T4 has been around 10 and I have been wondering if this is a little low for me. In January I was already down to 5mg per day and was advised to take 5mg every OTHER day. A couple of months ago I now just take 5mg Carbimazole in Mon, Wed and Fri.
I understand from my interaction with the "Function Doctor World' that "OPTIMAL" TSH is between 1.0 - 2.0 (NHS Range is 0.38-5.33)
Q1 - Could my T4 being around 10 be a little low for me and indicate I'm heading to Hypo?
Q2 - Why has my TSH started rising and it now 3.04 this is my highest ever (is this indicating heading to Hypo or is this indicating that I should increase or decrease my carbimazole slightly?
Q3 - I understand that Carbimazole is a 'Block and Replace' treatment so does that my mean my bloods are NOT reporting my true thyroid functioning but more my thyroid response to the block and replace carbimazole drugs etc (ie and it would impossible to go hyper or hypo on Carbimazole?)
Thanks in advance, I am rather confused and have been waiting for months to try and see my Endocrinologist to find out how I should safely reduce my carbimazole. However now my TSH is increasing I'm wondering if I need to "tweak' my carbimazole.
Thanks, Emma :o)
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EmmaC78
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Hi SlowDragon, thank you so much for your response. So I am only on Carbimazole 5mg (every other day althought that was too hard to remember so currently Mon, Wed and Fri). I've been trying to get an NHS Endo review appt since Apr but the Secretary and voicemail never responds so now have asked my GP to get me an urgent appt.
Q - Any ideas why my TSH might be slowly rising? (would it indicate it's high to compensate for low (for me) T4? It was consistently 10 until March which is low for me? Any thoughts greatly appreciated.
Q - My thyroid seems to have been screaming at me and aching for months now and all my glands/lymph nodes in neck and arm pit are swollen and seemingly straining... any ideas as to whether this would mean it's being over worked or is struggling so much it's hardly functioning at all.
Re: Diet yes pretty much gluten and diary free. My Vit D, Folate, B12 and ferritin levels are historically low in general. I have been taking iron tablet for 3 months and I've got it up to 60 (11-307) in Sept Blood test. My Vit D was 94 (50-375) in December but I had been taking high strength and am due a blood test in a month and will ask for Vit D and B12 (and folate if I can). My B12 was 241 ( 180-915) in Dec so could be higher. My Folate was 7.8 (3.1-19.9) but I'm not taking folate anymore. All just so expensive.
I am so struggling at the moment, life is one long endurance with buzzing, and going in to fight / flight / terror after eating my evening dinner and again on waking at 5am. Thanks in advance :o)
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Hello SlowDragon, firstly thank you again for responding. I am finding life extremely hard at the moment and am very grateful for your response. As fate would have it, I think the same day that I read your response, I had a letter from my hospital stating that they recommended I stopped the carbimazole and book bloods for 8 weeks time so I have now stopped my Carbimazole. As recommended I have restarted my Cytoplan Vitamin B12 sublingual which I already had and will do as instructed below, in fact I asked my GP for bloods for B12, vitamin (I forgot folate but will try to add). I've almost done a week now so can start the B Complex. I currently have the Credence High Potency Vitamin B which has B1, B6, B9 (folate - 5-Methylblah blah folate) and B12.... is this B9 the folate you mean? Thanks for following:
Vitamin B best after breakfast ✅
Vitamin B with folate in ✅
B12 over 500 recommended ✅
Regularly check Vit D, Folate, B12 and Ferritin level✅
Warning re: Biotin (in B Vit complex) and stopping (5-7 days before Blood tests) ✅
I have asked GP for Vit D and B12 levels which are booked for a couple of weeks and I'll try to add folate too.
My nervous system has been stuck in fight/flight/freeze for 10 - 15 years and 2.5 years ago I tried some sleeping tablets (Clonazepam) in utter desperation as I felt like I as breaking point (and had been for years). Sadly I had a bad reaction to another trial drug after just one day and got in such a state I then forgot to take my Clonazepam and within 2 days my anxiety sky-rocketed to sheer terror/PTSD. I was in such a state it actually took me 3 weeks to realise I'd forgotten to take my Clonazepam which was a Benzyldiazapine!! I had no idea the importance of tapering and I've been stuck in this "terror mode" for 2 years which is utterly hideous. I am a little over-whelmed by all the links but I think I have got my head out the jist of what you have said. So thank you very much. Need to get my head around the pernicious anemia as my ferritin levels have always been around 17, 19, 21 ie very low. I'm currently on ferrous sulphate tablets which upset my stomach but last bloods it was 60 which I think is the highest ever..
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Thank you again for this, I just wanted to pop on just to say I'm really struggling at the moment in so many ways but I don't want you to think your email wasn't helpful, I'm just too overwhelmed at the moment to think straight, digest and comment, it's terrible. I have had some Thyroid bloods today so should hopefully have some more information as also had Ferritin, B12 and Folate done so will try and find and post these when I feel able to. Thank you for you patience and understanding x
Looking back I see we spoke 3 years ago - in some detail - but I never received your reply as you didn't reply within my post and ensure my name came up as you started writing - and were helped by a fellow forum member.
anyway - I gave you Elaine Moore - elaine-moore.com - remember ??
and we have now some research you may like to read and copy for further conversations :
Graves treatment will take precedence over Hashimoto's - as explained previously :
All the Anti Thyroid drug does is semi-block your new own daily thyroid hormone production and slowly your over range T3/T4 readings will fall back down into range - while we wait for your immune system to calm back down again.
Now the plan should be to find the lowest possible does of the AT drug so that your T3 and T4 do not fall to for in the ranges as then you will likely experience the equally, if not even more disabling symptoms of hypothyroidism.
In ' normal ' circumstances the TSH rises when the T3 / T4 thyroid hormones circulating in the blood are too low so maybe this suggests that your AT drug needs titrating down - to more of your own daily thyroid hormone production to be released into your blood stream ?
So August 23 you started 10 mcg Carbimazole and still on this same dose - ?
Block & Replace is when your AT drug is prescribed at a level to fully Block your thyroid hormones BUT a measured dose of T4 is also prescribed ( T4 converts to T3 in the body) to Replace your own daily natural thyroid hormone so your T3 and T4 do not fall too far through their ranges.
So in answer to your question - this a normal and another good sign that your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop is working and responding ' as normal ' and not under the influence of Graves antibodies distorting readings.
Q1 - A euthyroid - fully functioning well thyroid - would show a TSH between 1.20-1.50 :
Treatment for hypothyroidism used to be started when the TSH rose over 3 :
Q2 - A T4 at 10 ' looks a little low ' but it depends on the range and if not on any medication would expect a T4 at around midpoint.
Q3- Carbimazole is not Block & Replace - and taking any form of thyroid medication will not give you a true picture of where your own natural T3/T4 thyroid hormones sit.
Hello PennyAnnie, thank you so much for your response and I am so sorry that I did not reply in your thread meaning you didn't receive it. I definitely remember you sending me details on the Elaine Moore.com and remember reading about this (although my memory is a little fuzzy now). I am not sure what you mean by AT? Is Carbimazole an AT drug? I am only on Carbimazole 5mg (Mon, Wed & Fri). Thank you for helpful info that optimal TSH levels are even more streamlined now to 1.20-1.50, I seem to be steadily increasing so I think you said this means my T3/T4 might be a little low. Would that mean reducing my Carbimazole would make more sense? Apologies, my anxiety levels are more like 'terror' and 'survival' mode at the moment so concentrating and focusing and reading are extremely challenging at the moment..
I will take a read of those links over the weekend and respond maybe after your response to this so I don't get confused :o) ... any sorry for any confusion, I am really struggling in life at the moment but will read those articles
Carbimazole is an Anti Thyroid drug which blocks your own new daily thyroid hormone production.
You might feel better chopping this 5 mcg into 2 and taking a lesser dose of 2.50 mcg for 6 days a week to dovetail in better with your own natural body's thyroid function.
You September result show a TSH over 3 and tells me your immune system is no longer in control of your TSH and that you are now likely in remission from Graves -
and yes - you look now to be hypothyroid and so it makes sense to reduce /stop the AT drug - and hopefully your thyroid will reset itself without the need for any drugs.
Your B12 is very low = have you been tested for pernicious anemia - and likely iron deficiency anemia before you start / started suplementing ?
I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 - ( serum B12 500 ++ ) and vitamin D at around 125.
Low levels of these core strength vitamins and minerals will compound your ill health further than necessary.
Very important to get your thyroid antibodies rerun -
I think Graves TRab/ TSI will be low and under range -
but you might still have over range and positive TPO / TgAB and positive for Hashimoto's another thyroid auto immune thyroid disease that presents with erratic swings in thyroid hormone production and longer term disables the thyroid leaving you hypothyroid and needing T4 - Levothyroxine - thyroid hormone replacement.
Hello PennieAnnie, firstly thank you again for responding, I am really struggling in life at the moment and your messages and help is greatly appreciated. So coincidently I finally heard from my local hospital Endo and they said to stop the Carbimazole so I have now stopped as from 15th Oct. Thank you for confirming that with the TSH going over 3 it indicated that my immune system was no longer in control although I'm not sure what you meant about this and Graves in remission? Do you mean that the Carbmizole had done there job? (not sure if you can elaborate this point). Thanks for you guide lines re the following:-
Optimal Levels:
Ferritin around 100 ✅
Folate around 20 ✅
Active B12 125 - ( serum B12 500 ++ ) ✅
Vitamin D at around 125✅
I will work on my levels of these over the next few weeks (as per SlowDragon response) and your level recommendations and actually have a blood test for Vit D and B12 on 13 Nov so will try and add Folate too. My Ferritin as 60 a few weeks ago although I've been forgetting to take the ferrous sulphate tablets since the blood test .
Q - I don't think I've been tested for pernicious anemia and likely iron deficiency anemia but have already been supplement B12 recently but will bear this in mind in the future, how is the best done, is it a simple blood tests? What would the levels need to be to be this? (I can look at my historical levels of these over the last 8 years).
Q - I always have a real battle getting my thyroid a/b's tested, NHS are so anti doing these and they say they're irrelevant (I know otherwise) but wonder how you manage to get these done yourself and what you say?
Also why it is important? Is it because we want to see if my Graves is in remission etc or something else, would be grateful for your take on this if you can elaborate.
So to clarify would you say these a/b's are linked to the two thyroid conditions I have:
Graves - indicate in TRab/ TSI anti-bodies (which you think will be low and under range)
Hashimoto's - Would be the TPO / TgAB anti-bodies?
I have been told I have the a/b's for both Hashimoto's and Graves (in case that wasn't clear).
Thanks again for your support, kindness and message. Very grateful and apologies for all the questions and clarifying.
OK - so - glad the hospital have advised to stop the Catbimazole -
Hopefully your T3 and T4 will start to recover and level off in range - and your thyroid reset itself without the need for any drugs.
The ' nature ' of Graves is that these antibodies circulate in your blood and latch on to the TSH receptor sites pushing down on the TSH receptors, which then, in turn, pushes up thyroid hormone production and you become hyperthyroid - and as long as Graves is active and keeps producing these sticky antibodies in your blood your TSH receptors stay stuck down which results in a suppressed low TSH -
but once the TSH starts moving and not suppressed down by antibodies I presume this means your immune system is calming down - there are less antibodies circulating in your blood steam and this first and hopefully only phase of Graves is coming to an end. Does that make sense ?
You should have been tested for both pernicious anemia - low B12 and iron deficiency anemia - low ferritin before you started supplementing - anyway - the NHS iron tablets do upset many people - I wasn't offered an alternative so purchased my own and got on much better with Gentle Iron - but any iron bisglycinate over the counter OTC - option will be tolerated better.
Testing for key vitamins and minerals is a simply blood test - just remember to stop all supplements for around a week before testing them so we measure what your body is holding and not that just ingested.
I now aim to maintain my ferritin at around 100-folate around 20- active B12 125 ( serum B12 500++ ) and vitamin D ar around 125.
Once tested for thyroid antibodies you have a diagnosis - and it doesn't need repeating except some hospitals do recheck Graves ab before suggesting you come off the AT drug as a double check and do not rely solely on the fact that the TSH is moving and not low/ suppressed.
Your Graves is in remission if your ab are below the cut off number - it i an Auto Immune disease so you may always have some Graves circulating in your blood stream but not enough to cause havoc with the TSH and thyroid - we hope -
You may still have Hashimoto's ab - TPO and / or TgAB circulating in your body and may experience some swings in T3 and T4 readings causing symptoms - but they are transient and not treated with drugs as they fall back down into range by themselves as this AI goes on to fully disable your thyroid - and you will likely become hypothyroid and need a prescription for thyroid hormone replacement - T4 - Levothyroxine in the future.
You can get all your thyroid antibodies run - as well as your TSH, Free T3 and Free T4 and inflammation, ferritin, folate, B12 and vitamin D run by arranging a private venous blood draw - which many forum members do an then post the results / ranges on here in a new post for considered opinion.
Thyroid UK - the charity who supports this patient to patient forum have a page listing Private blood test companies -
there are a couple of companies - Medichecks & Blue Horizon - who also arrange a nurse home visit to draw your blood which is the least stressful way to get the blood test actioned - and is a round 10/11 bio markers and worded as a thyroid extra or thyroid full/ultra blood panel -
and think the only company running the Graves ab is Medichecks - and it is a separate blood test found on their website under thyroid - stating TSH Receptor Stimulating Ab test and cost £100.00 :
Ok - I think and hope I've answered all those questions - and feel like a broken record !!
Hello PennieAnnie, I have tried to come on here and respond a few times but just feeling so overwhelmed with life at the moment, so just wanted to let you know why you hadn't heard, everything is overwhelming me and I'm bearly holding things together. On the positive I have had thyroid bloods done today and Ferritin, B12 and Folate and Vit D done last week so will share these when I feel up to it. Not enjoying things much at the moment but please don't think I'm rude, I very much appreciate our messsages, very very grateful for your kindness. Thank you for your patience and understanding at this difficult time x
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Losing my mind - please advise!!
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