I was diagnosed with hyperthyroidism in March, my levels have been brought down with carbimazole 20mg, to the point I'm now slightly under active tf4 is now 8 and needs to be 11, so gp is reducing my dose to 15mg a day (can't get in touch with endo, only had 1 telephone conversation). At my last bloods they checked for my trab antibodies. Gp told me today that antibodies are within range? Why would I have any antibodies at all if I don't have graves disease? Does it mean I don't have it if my antibodies are in range? I asked what else it could be causing the hyperthyroidism as I've had a scan to eliminate anything else, and she said she still thinks its graves even though my antibodies are in range. Thank you for reading x
Can you have graves disease even if the blood t... - Thyroid UK
Can you have graves disease even if the blood test says antibodies are in range ?
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L3008
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Welcome to the group. You need to post all of your results along with lab ranges to make it easier for people to comment.
Hi, thanks, I kn, I wrote a question a few weeks ago, and realised numbers and ranges were important, but with the current situation everything is all over the phone and I'm not actually given any ranges or numbers. All I was told today was that my antibodies were in range and my t4 was 8 and it needed to be 11-22. My tsh has gone from being undetectable in March and t4 being 40.6 to now my tsh is 11 and t4 being 8. So does this mean I don't have graves if my antibodies are "in range"
I'm not actually given any ranges or numbers
And you never would be if most doctors had their way. You have to ask for them. Insist on having them because the law says you're entitled to them. Most people ask the receptionist, because that's often easier than asking the doctor. Although there's no real reason why the doctor can't give them to you over the phone, given the current situation. But, you have to ask.
Why would I have any antibodies at all if I don't have graves disease?
Because people do have antibodies, and that's why we have ranges. If the antibodies are over range, they are positive, if they are within range, they are negative. And, the range for TRAB is very small. So, you won't have many.
she said she still thinks its graves even though my antibodies are in range
Well, she would, wouldn't she. She doesn't know that much about thyroid, but made a 'diagnosis' without doing the proper tests. Now, she has to defend that 'diagnosis' or admit she was wrong. And, they hate doing that. But, that still doesn't mean you have Grave's.
You are now very, very hypo, and must feel terrible with that low FT4. Your doctor gave you the wrong treatment and that makes it even harder for her to admit she was wrong. And perhaps she's realised her mistake - but thinks you won't - and that's why she won't test for Hashi's. Can you see somebody else?
SeasideSusieRemembering
L3008
You should have had your antibodies tested before being prescribed carbimazole. This is a common mistake frequently made by doctors. They see a low TSH and high FT4 and automatically assume Graves and very often it's not. Many members have been misdiagnosed like this and put on Carbimazole when they shouldn't have.
If you re-read replies to your previous post
healthunlocked.com/thyroidu...
particularly those by SlowDragon , she explained that Hashimoto's often starts with a hyper episode so it's important to test both Graves antibodies and Hashi's antibodies before a diagnosis can be confirmed and the correct medication prescribed.
If your Graves antibodies have come back negative, it's quite likely that you have been misdiagnosed and that you actually have Hashi's. You need TPO and TG antibodies tested.
Thank you. I asked for them to be done and they wouldn't. I will ask for them to be done with my next bloods in a month
If in the uk get private blood test
Yeah, I'm just looking at the ones you posted last time. What do I do with the results afterwards though? Will my gp except them if I need any medication?
First step is to work out what’s going on by getting tested
Then come back with new post once you get results
Members can advise on what results mean
Then go see your GP/different GP to discuss
If you have Hashimoto’s Carbimazole is not the correct treatment
I'm trying to work out which one is the best for me without spending a fortune !
Medichecks Thyroid plus ultra vitamin
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Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
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As a minimum you need TSH, Ft4, Ft3 and BOTH TPO and TG antibodies
But important to get vitamins tested
Slowdragon, I'm don't know if you know, but the the tsh receptor antibodies test is a separate test, if I wanted to have that done again too, it's a "drawn" blood test rather than a finger prick. Would I be able to do it myself (I'm confident to do it) or does HAVE to be a nurse/professional?
No you can’t do your own blood draw
You’ll have to either find a phlebotomist who will do it...or wait until lockdown is eased
Thank you
GPs accepting blood tests - probably not but at least you will have a complete picture of what is going on and can go from there.
I’m no expert but I thought it was the presence of antibodies that confined Graves. When my Graves was first diagnosed I had out of range low TSH and over the range T4 plus antibodies.
Has your doctor arranged for you to see an endocrinologist? Even if it is a telephone consultation. My doctor started me on carbimazole but I was so hyper that was to tide me over until I saw the endo and my surgery file shares with my local hospital - after a blood test at four weeks I got a letter from my endo telling me what to do next, normally GPs don’t treat people with Graves.
To be fair, I think I was so hyper and felt so badly, that they gave me carbimazole to get it down which I completely needed at the time, I was really poorly. Bit now that I'm so under and feel terrible for that, and my antibodies have come back normal, I'm not comfortable with being on 15mg carbimazole a day and that it's most probably still graves. It just doesn't make sense to me, and I'm so lost as to what to do now
If you become hypo you do feel horrible- I started on 20 for four weeks, nothing happened, doubled it to 40 and took that for two months with no tests and was very hypo when I had my first endo appointment two months later.
It’s different to how you feel when you are hyper but you still feel pretty awful as you’re finding out. That’s the reason I wouldn’t want to have RAI unless it was an absolute last resort.
Can you phone and speak to your endo or someone else with some idea about what to do next on Monday?
I have never felt as bad as I did in the first few months of being hyper. The carbimazole seems to be working for you, but reducing the dose rather than stopping it altogether at this stage is the usual approach - see my previous email. The fact that your antibodies are now normal may simply be down to the treatment having worked - depending on what type of scan you had (do you know ?), results for Graves' can be quite distinctive.
GPs often don't get very involved in treating Graves' patients, as under normal circs we are referred to a specialist. If (hopefully when) you get to see the specialist, ask them to talk you through all your results, including the scan and blood tests, asking them to explain what confirmed their diagnosis and guided their treatment. It does vary, but I've always found my endos helpful and happy to explain.
Thank you so much for all your replies. It was just a ultrasound scan to check for any swelling or lumps or anything sinister. All was fine. I have been contemplating just stopping the carbimazole if I'm honest, but I'm so scared to go back to how I was a couple of months ago, I was so poorly at that point, even though I feel crap now, I would never want to go back there. I understand a lot more now you've explained the medication side of things, so thank you so much for that. I am going to do my own blood test, just so I have an clearer idea myself where I am at. I have spoke with the endo once, but can't get back in touch due to the circumstances at the moment, he has told me he has been called back onto the wards. Gp has said if she can't get my levels stable she will get in touch with him if I haven't heard from him. The endo phoned me after my scan and two blood tests, he said he thinks its graves. It's just thrown me that my antibodies cane back in range and completely confused me. My thyroid levels have responded very quickly to the carbimazole.
given the current situation, the GP may be in touch with an endo - L3008 could ask about this, and whether she will be referred to a specialist as is usual in non-covid times,
Just an update, I phoned the endo this morning, he has phoned back and told me that it wasn't the correct antibodies test!? I rang gp and asked if I could have a copy of all my bloodwork results. Unfortunately, only my last thyroid results were on there (gp is phoning tomorrow with regards to the previous ones where I was hyper) but it says they tested for TPO, rather than TRab as I thought. tpo was 25.0 (0.00-33.90) what does that mean? Endo is sending a form for the TRab test.
Good job you asked ! TPO is a general indicator of an autoimmune disease. It’s found in virtually all cases of Hashi’s, but also around 65% of those with Graves’. If TPO levels are persistently high, they are likely to predict Hashi’s, but people with Graves’ often have elevated levels too.
thyroiduk.org/getting-a-dia...
At least the endo is ordering a TRAb test now. If the result is positive, it will confirm Graves’. If it’s within range, especially as you’ve already had antithyroid treatment and your thyroid levels are currently within the reference range, it doesn’t necessarily mean you don’t have Graves’, but it may give some indication as to the likelihood of you achieving long term remission. (Some studies agree with this, others don’t...)
core.ac.uk/download/pdf/535...
They should probably retest TFTs at the same time (FT3, FT4, TSH... it
doesn’t look as if you’ve had FT3 tested at all yet ? ) - take a look at the form when it arrives.
My ft 3 has consistently been in range from what I can tell. Between 3.1 and 7.1 (3.1-7) my ft4 has gone from 40.6, 28.5, 17, now 8.5 (11-22) my tsh was undetectable until my last bloods which was 11.8 (0.3-7) and now the tpo which as I said is 25 (0-33.9). I've been taking just 10mg of carbimazole, 5mg in the morning and 5mg at night. I know its probably too quick but I can honestly feel it changing already (unless it's just in my head!) I'll just have to see what the TRab comes back with!? He wants me referred to the ophthalmologist aswell because of my double vision!? Gp said to re do my thyroid levels in 3-4 weeks, should I wait to do my TRab then do you think?
FT3 is often the first to go above range with Graves’ and the last to come down. This is one of the reasons they test FT3 regularly for people with Graves’ - FT4 and TSH can look fine, while FT3 isn’t. TSH often takes ages to recover - maybe it’s happened because your thyroid levels are below range.
The reason for the ophthalmology referral is that there is a disease related to Graves’ called thyroid eye disease. Overall, around 25% of people with Graves’ develop this at some point, although the chances are significantly higher in smokers. (If you smoke, this really would be a good time to stop). Most cases are mild and are simply monitored or treated with eye drops, but your endo should confirm you haven’t had any vision problems every time, certainly in the early days until they are confident that you will mention any changes without prompting.
There is more info here
btf-thyroid.org/thyroid-eye...
Re the blood tests - it usually makes sense to have a set of tests done at the same time. If the TRAb form from the endo specifies TFTs as well as TRAb, you could get them done as soon as you have the form, but it may be a bit soon for the effect of your reduced dose to show.
Did you tell the endo that you were only taking 10mg/day ? It’s difficult for them to adjust your dose appropriately or work out what is happening if they don’t have the full picture.
Is tsi and TRab the same thing? Sorry to ask all these questions, I just really don't understand all this and trying my best to get my head round it
Not exactly, but most people seem to be offered one or the other, and apparently most TRAb tests include TSI, although some test TSI alone. There is an explanation here. mlo-online.com/home/article.... Bottom line : if either is positive, you have Graves’.
So with the tpo being in range, it's most likely not hashi's? But if the TRab comes back in range, there's still a chance it could be graves? If it's not graves, what else could it be? It's all so confusing 😔
TPO can fluctuate too. If the TRAb comes back in range, it could still be Graves’. The scan you had should have ruled out other hyper causes (but check this with the endo). TGAb is specific to Hashi’s, but I don’t know much about it - I had a positive TRAb test after my first visit to the endo, so there wasn’t any doubt in my case. Others here should be able to help with tests for Hashi’s - @slowdragon maybe ... I would tag her, but can never get it to work on my iPad.
Given that you are taking 15mg/day of carbimazole (and until recently,20mg/day) the most likely cause of your recent below range test was almost certainly the result of over-medication.
My Endocrinologist overdosed me on PTU which is an alternative to Carbimazole and my TSH was 9 and felt very ill. If I was you I would join Elaine Moore's site and ask for her advice because she helped diagnose me when my GP had said my results were "normal" for over 2 years. You can read my story on my profile page if you are interested. I personally think you should reduce the carbimazole or even stop it for a while because your levels are very low and then do a blood test. I was virtually bedridden when my TSH was 9 but my Endocrinologist said I need counselling for feeling so ill.
Here is the link for Elaine Moore's site
Is it safe to just stop from 20mg a day? I do feel awful, my face neck legs are all so swollen with water. Extremely fatigued and emotional. I knew something wasn't right!
reduce the dose to15mg/day as your GP suggested, but stick with the treatment. if you don't feel quite a lot better in 3-4 weeks time (results are unlikely to be instantaneous) call your GP and suggest your next blood test is brought forward.
I would have a break because your levels are very low. I stopped mine and it took me months before my levels began to rise and I felt well. I am just speaking from experience now.
This is another worry. I'm scared of stopping my carb or reducing too much incase I go back hyper, as that was an experience I never want to repeat. But then I'm worried if I don't stop or reduce enough my levels wont come back up, and as I don't seem to have too many antibodies, they aren't there to make my levels rise x
If I was you I would ask Elaine Moore she has a lot of knowledge about Graves' and helped diagnose me 10 years ago when my GP told me I was suffering from the menopause. This site is brilliant for hypothyroid but her site is better (sorry if this offends anyone). I am just speaking from experience now.
Yes you can have Graves even if everything looks normal .bloods etc..as my doctor said I would feel it before they could see syptoms....I was hyper and had been for years...waking up at 3am and proceeding to clean windows.hoover etc..then doc said I was just super energetic!!!@guess the carbimazole is making you itch/ache...I could not tolerate it and had same as you have itching/ aching etc...and had RI and now no thyroid function and now hypo !!!and have started liquid levo as I could not tolerate tablets (fillers in them!!!) Which give syptoms on their own!!!.hope you feel better soon...maybe try tablets with as.little fillers as possible....cellulose and lactose and the sweetners they put in them is the problem for most I think..good luck...
Even if the antibodies have come back in range it can still be graves? She wants to test it again in 3 months. It's the only time I've had a test for graves.
in reply to L3008
Antibodies fluctuate. One test may show in range and another test high.
Graves’ is caused by the antibodies essentially taking over the role of TSH and telling the thyroid to produce more hormone. However, unlike TSH, the antibodies are not regulated by the pituitary gland, and they continue to cause more thyroid production even though the body may already have more than enough. for its needs.
Graves’ can relapse and remit of its own accord, so the antibodies will fluctuate. They can also be reduced by treatment (eg carbimazole), and a negative test at this point could be a good sign that you may achieve long-term (sadly, not necessarily permanent) remission. Some patients, whose Graves’ is eventually diagnosed via other means, eg scans, do not have positive antibody results..
The view is that the best dose of achieving remission via anti thyroid treatment (eg carbimazole) is to continue taking the medication for 12-18 months, then stop the treatment (provided levels are stable and within range) to see what happens.
There are two approaches to this. In the first, 'block and replace', sufficient antithyroid medication (perhaps 40-60mg carbimazole per day) is given to stop natural thryoid production altogether (the 'block' bit) and then synthectic hormones are given to 'replace' what the body would have produced naturally. The advantages of his approach are that thyroid levels are better-controlled during treatment, the patient is unlikely to end up hypo through over-medication., and less frequent testing will be required. On the other hand, the required dose of carbimazole (which can have serious side-effects) is greater, and because natural thyroid production is suppressed, there is less indication as to the likely success of the treatment.
You are on a second approach, known as 'titration', where the dose of carbimazole is reduced (titrated) over time, until eventually (when your thyroid results are stable and within range), the treatment is withdrawn altogether to see whether you have achieved remission. The plus side of this approach is that you will probably end up taking less carbimazole overall. It's also easier to see the extent to which you are responding to treatment before it is stopped. Generally, clinics prefer one approach or the other, although B&R is not suitabkle for women who are pregnant.
Reducing your medication to 15mg/day seems a reasonable thing to do at this point, but they will need to test you again in a few weeks (eg between 4-8 weeks - not much point in re-testing any sooner as it will take a while for the impact of the new dose to become apparent). If, by your next test, your thyroid levels are towards the middle of the range, they may reduce your carbimazole dose again. If they are much above the middle of the range, they may keep you on the same dose to see whether they are stabilising or whether there is a pattern of increase. It can be quite difficult to get the carbimazole doseage right during titration, and it isn't uncommon to slip below the range for one test period. Get to know your hypo/hyper symptoms, and if you feel they are getting worse, you can always ask for your next blood test to be brought forward.
The important thing to know is that anti-thyroid treatment for Graves' won't be a quick fix. Typically you can expect to be on the medication for 12-18 months, although by the end of this period you may be down to 2.5-5 mg/day. You [probably] don't want to rush through this stage, you want to give it the best chance of success, because if your thyroid can't be controlled with anti-thyroid treatment, the other options are more drastic - surgical removal of the thyroid, or radioactive iodine treatment to shrink it, either of which option is likely to leave you needing to take thyroid hormones for the rest of your life. 15mg carbimazole/day is a pretty moderate dose - in three years since diagnosis, I have only been below that for a couple of months, at which point my thyroid levels took off again.
Here are some links about Graves'/TRAb - if you google, others ae available:
Thyroid antibody levels may not predict thyroid hormone levels and risk of recurrence in older patients with Graves’ disease
endocrine-abstracts.org/ea/...
Clinical diagnosis of Graves’ or non-Graves’ hyperthyroidism compared to TSH receptor antibody test
ncbi.nlm.nih.gov/pmc/articl...
Thyroid antibody levels may not predict thyroid hormone levels and risk of recurrence in older patients with Graves’ disease
thyroid.org/patient-thyroid...
And here are some more general articles about Graves':
thyroiduk.org/hyperthyroid-...
btf-thyroid.org/antithyroid...
Good luck L3008 , any more questions, just ask 
The one situation you didn't address is what the OP reported: Her T4 is now BELOW the range.
You also didn't address, what if she doesn't have Graves, but rather was experiencing a Hashi upward swing? Luckily, two of the admins here have addressed that. She needs to have antibodies tested.
The one thing I would hope we can all agree on is that staying on her current dose of medication is making her ill and could be dangerous.
It’s difficult to get the dosage of carbimazole right and not unusual to dip temporarily below the range. The usual response is to reduce the dose, as her GP did (by 25%), not stop it completely.
When I posted this, others had already suggested it could be a Hashi’s swing, so I saw no reason to repeat this. What THEY didn’t address was the fact that if this is Graves’, stopping her medication could lead to L3008’s thyroid levels shooting up again, which could also be very dangerous (potentially quite quickly).
Valarian, Your reply made alot of sense as that's what the gp had tried to explain I think, just you put it in a way that was clearer. I'm too scared to stop or reduce the carb too much, when I was hyper at diagnosis, that was something I don't ever want to repeat, I was really poorly. I'm just worried now that my levels wont come back up, and the fact the my graves antibodies came back in range, they are not there to push my levels back up again (if I make sense?) Just feel I've shot from one end of things to the other and feel awful for it. It's just really threw me that the antibodies were in range yet it can still be graves. I have ordered a full thyroid check, so hopefully that may give me more answers!? Although I have no idea what the results will mean 🤦🏼♀️
While the lockdown is on if you feel really ill I would stop it. I went untreated for over 2 years with a suppressed TSH of 0.002 and I had a thyroid storm last year. Thyroid storms are rarely fatal and I am still here.
Thyroid storm is a medical emergency with a 10-20% death rate. Given the current situation in particular, why would anyone want to add to their risk of ending up on ICU?
webmd.com/a-to-z-guides/wha...
ncbi.nlm.nih.gov/pmc/articl...
medicalnewstoday.com/articl...
It does bother me that people on this forum advocate other members stopping their medication as if they were eating smarties. We cannot possibly have the full medical picture of posters, nor are most of us medically qualified. Sometimes we may believe the poster’s GP/endo is wrong, in which case surely the best thing to do is to get them to go back and ask lots of questions (which we can help with) or seek a second opinion.
A lot of the time, people may get away with stopping their medication. Some of the time, they may be better as a result. But one day, there is a risk someone will respond to “popular opinion” calls from this forum to stop taking prescribed medication, and end up in hospital as a result.
I had one last year so I do know what a thyroid storm is. They thought I was having a heart attack when I was admitted to hospital at the Royal Shrewsbury Hospital. I was put on a heart monitor and my heart rate as was my blood pressure was very high and I was sweating and shaking so 2 nurses had to hold me down while they attempted to do an ecg. I had various tests and because my TSH was 0.58 they did not treat me. As usual they did not test the T4 and T3 or antibodies and I think my T3 would have been very high if they had. The consultant on A & E admitted he knew nothing about thyroid disease and he discharged me. I arrived home and collapsed again and had to to call an ambulance because I was still not well they decided not admit me to hospital because I had already been admitted once and discharged because my heart was ok. The day afterwards I saw my GP who requested a full thyroid function but because my TSH was in range the lab didn't bother to test anything else. I have no confidence in the NHS when it comes to treating me because of this. I am not telling the OP to do anything I am just passing on MY experience and she can decide for herself. Everyone is an individual and what works for some does not always work for others. Just to add I worked in a hospital pharmacy and would not call drugs "smarties" that is very flippant to make that remark ... no offence to you but just an observation.
If you post the results here people will be able to help explain them, but when an endo prescribes medication for Graves’, they look at the trends as well as the specific result, so you need to bear this in mind.
Many of us with Graves’ remember how awful it was at the beginning, and never want to go there again.the good news is, your thyroid levels did come down, so hopefully you will soon be feeling a lot better.
It’s worth making a note of your symptoms when you were hyper and your symptoms now for future reference - being able to articulate them may help if you feel you should have a blood test brought forward at some point.
I prefer to being slightly hyper than very underactive. When my TSH was 9 and my T4 and T3 were very low I just lay in bed all day with no energy at all. When I was very hyper I would go all night with no sleep and that happened last year a couple of times. I now feel ok even though my T4 is at the top of the range at 22 and my TSH is lowish at 0.38. This is my own experience and I am not telling the OP to stop if she feels ok. Carbimazole is a very powerful drug and it did not suit me so I took PTU which is an older trusted drug.
Anti-thyroid treatment is normally expected to last 12-18 months in order for the patient to stand the best chance of achieving remission. In one approach to treatment, the dose is titrated over time as thyroid levels stabilise within range, but it takes time for the effect of the change to become apparent. Choosing to come off the treatment early, especially without medical advice, may lead to thyroid levels shooting up again, reducing the chances of achieving transmission. Uncontrolled hyperthyroid patients can also end up in hospital with thyroid storm.
From your profile Jnetti, you have a hypOthyroid condition, and have presumably never experienced the thumping heart rate (resting heart rate consistently way above normal), tremor and muscle uselessness of full-blown Graves' disease. Please be careful what you encourage others to do.
in reply to Valarian
Just deleted what I wrote earlier x
Just an update, I phoned the endo this morning, he has phoned back and told me that it wasn't the correct antibodies test!? I rang gp and asked if I could have a copy of all my bloodwork results. Unfortunately, only my last thyroid results were on there (gp is phoning tomorrow with regards to the previous ones where I was hyper) but it says they tested for TPO, rather than TRab as I thought. tpo was 25.0 (0.00-33.90) what does that mean? Endo is sending a form for the TRab test.
Hi the first time i went very hyper my TRAB was raised .After treatment with Carb for 18 months i eventually came off it and had normal bloods for around 5 years .The symptoms came back and i knew i was hyper again .This time my TRAB was within normal range but my TSH T3 T4 very hyoer so went back on Carb .I was told it was Graves again although TRAB was normal .Consultant said the Carb may have reduced my antibodies as i waited a few months for the Endo appt .He said rarely you can have TRAB neg Graves which i thought was odd .How did you go on i see this post is 2 months old ?
Best wishes Pipps x
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