Diagnosed with Graves Disease ( May 2023) , being treated with Carbimozole 5mg /1 / day.
Today's blood results show continued fall in high T3 and T4 since April 2023 at their tested peak:
T3 - now 3.6 pmol/l range 3.1 -6.8
- April 10.4 pmol/l - range 3.1- 6.8
T4 - now 12.8 pmol/l range 10.8-25.2
- April 27.9pmol/ range 10m8-25.2
TSH - now 0.12 IU/L range 0.27-4.2
- April 0.02 IU/L range 0.27 - 4.2
Am concerned at this rate I will be well HYPO before I see consultant next in 3 mths time. She did say she'd call me once results are in if meds adjustment needed.
I think they do need changing ....but how far can they be , given I am on a low dose of Carbimazole already.... half a tablet ?
Any info on the normal approach taken ?
I have made it clear I do not want to go hyPO.
Want to make sure I understand my options/ possibilities as this doc doesn't lay them out until I quizz her....as quite an arrogant approach !
Plus don't want a delay on any changes....so am thinking in calling tomorrow flag the results for a speedy response...before I fall any further.
Hoping this makes sense and I have understood the mechanisms at work with these hormones and the treatment approach ?
Any thoughts pl..what should the doctor say to do ? Can I get a lower dose ? Do meds get changed to anything else ?
Many thanks.
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Littlefoot1thyroiduk
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I don't have too much experience with hyperthyroidism but I would encourage you to contact your Endo via their secretary and flag up your results and concerns. Your blood results are looking on the low side.
You are quite right as your T3 and T4 readings are now showing you at the lower end of the ranges and heading towards the equally disabling symptoms of hypothyroidism.
The Anti Thyroid drug needs to be titrated down and you could chop the 5 mcg into 2 - giving you a daily dose of 2.50 mcg Carbimazole or likely get told to take the tablet every other day.
All the AT drug does is put you into a ' holding position ' rather like an aeroplane waiting for a landing slot, while we wait for you immune system to calm down and the first question is :-
Why has your immune system turned and started attacking your body rather than defend it ?
The other question is what symptoms took you to the doctor and have these been relieved ?
The final question, for now, is do you have the antibody blood test there detailing which antibodies were found positive and over range in your blood at diagnosis ?
Generally written as either a TPO : TgAB : Tr ab : TSI :
There is an alternative anti thyroid drug called - PTU for short - Propylthiouracil :
Do you have the Patient Information Sheet with the Carbimazole ?
Thank you pennyannie, meds thinking makes sense to me.
But endo has just today said stick to 5mg carbimazole daily until next review- she said is 3 mths away. ... what does she know that I / we don't ?
She said do bloods again before I see her ... I'm inclined to do more frequently privately - what does anyone think please?
Good questions .. thanks ... :
1. Other tests:
- Thyroglobulin Antibody ( TgAb) 30.9 IU/mL ; ref range - 0-115 ; Method used - Roche Modular. So normal.
- Thyroid Peroxidase Antibodies - <0.9IU/ml ; ref range – 0-34IU/ml ; method used - Roche Modular - So result indicates no elevated TPO antibodies, so unlikely to be Hashimoto's - especially given the Graves diagnosis from TraB result as below.
- TSH receptor Ab ( TraB) - 4.08U/L ( high ) - used to positively confirm Graves disease in my case. .(My understanding is the TSH receptor antibody (TSHR Ab) is also commonly referred to as the Thyrotropin Receptor Antibody (TRAb) or Thyroid-Stimulating Immunoglobulin (TSI) test. and al are used interchangeably to describe the same blood test- confusing .. mm ?! ) .
- No indication of cancer been tested;
- goitre yes but small and I can now see is visibly shrinking ; had scans - no nodules etc - just inflamed as to be expected.
The Graves diagnosis indicates autoimmune issue and docs can't say what triggered it - I have other autoimmune things asthma, eczema - these 2 all my life ; last 15 yrs, vitiligo , hair loss ,; so reckon I am just made that way - and nature got the better of me these last few months as TSH done regularly for last 5 yrs have all been ok till this spring. Medicine is an imperfect science still - we don't know everything - is very complex . But am not just lying down on this !!
But am realistic I think.? Am I ? Missing anything? Being too complacent and accepting?
The only other thing I have not had tested is Helicobacter pylori (H. pylori) infection - have to stop my meds for 2 wks to do it - but I haven't had any of the related symptoms so can't see is worth it - at least not right now ?
2. Symptoms - just not coping, v v tired ( had a whole week in bed - exhausted and unproductive cough) and lost a lot of weight fast ( triggered medics concerns of cancer) , - to be significantly underweight on BMI scale - but weight which is now rising. Feeling much better but not on top fully - but lots going on in my life/ stress / caring responsibilities x 4 and am getting older and still needing to work beyond 66 - I am 65 now as only wage earner ... not sure I know what normal is anymore . 😜😀
Docs talking about being on meds for a year/ 18mths cos it's NICE guidance ? But that doesn't make sense to me given the improvement so far . Nice guidance is based on aggregate research information - I am a 5 ft small frame female - doubt many of us in the sample they used for the research - so feeling the guidance is not much tailored to me ! i did ask the doc about this and got the reply ' well that's the guidance ' ! Ie she ain't gonna do anything but that. .. so much for personal care.
Yes the TRab is a positive for Graves Disease - do you have a range there - possibly just a number with a > or a < ?
Graves is considered life threatening if not medicated so please stay on the AT medication - check the PIL for any side effects and get switched to PTU if problems occur.
Are your eyes affected - dry, gritty, streaming with water, light sensitive ?
Graves is a poorly understood and badly treated AI disease and no two peoples journey with Graves are the same though stress and anxiety are common triggers.
There is likely a genetic predisposition maybe a generation away from with someone dealing with a thyroid health issue.
You will feel exhausted, as your body is in a ' heightened state ' - but the nature of Graves is that although you are physically exhausted your brain is telling you to go run a marathon - you maybe eating for England though loosing weight - as there is a brain / body mismatch and your metabolism all over the place.
With Graves there are both blocking and stimulating antibodies at play with the victim of their attacks being your thyroid - and at any one time either extreme will be taking control of your thyroid - bit like a game of football - vying for control and sometimes they can burn each other out, leaving you feeling relatively ' normal for you ' at any given time.
When metabolism is not sitting quite right for the individual the body also struggles to extract key nutrients through ones food no matter how well and clean one eats - and low vitamins ad minerals can further compound your health issues - so suggest you get a ferritin, folate, B12 and vitamin D blood test run and post the results and ranges back up on here in a new post unless you have the answers there already, and you will be given considered opinion as to where these should sit to support you through this phase of Graves Disease.
We do now have some research you might like to keep - just in case needed later :-
For all things Graves I found Elaine Moore the most well rounded of all books and websites I visited researching Graves for myself. elaine-moore.com
I had RAI thyroid ablation back in 2005 - I was in a state of shock, and my only new symptom insomnia - I knew no different, trusted mainstream medical, followed the advice and became seriously unwell some 10 years later and finding no help within the medical profession started self medicating some 5+ years ago and now much improved.
Thanks for that insight ! A you are feeling better !
I am on top of the nutrition side - taking specialist advice on that.
Am resolved now to go back to the GP as Endo not engaging ... and see where that gets me to ....
..... although luckily just had a change for my next appointment to a chap I know - he treated my son for T1 diabetes - and I know he has an entirely different style and approach - he treats the person! So xing fingers he sticks with me. 😀
PS the TraB range was 0 u/l - 0.39u/l .. so I was pretty high at 4.08 u/l to say the least ! .. and it got worse between 23 and 24 May - I wont bore you as to why I had 2 test so close - another process botch up!
as you must know hospital staff. irrespective of position work to guidelines otherwise they risk loosing their job:
You may well find a different thought process and treatment programme is within the private sector - though you will likely need a specialist in the field of endocrinology and not a diabetes specialist.
Thyroid UK the charity who support this forum hold a patient to patient recommended list of thyroid specialists -both NHS and private - you might like to contact admin for a copy - thyroiduk.org - and there is a lot more information within the Thyroid UK website :
I had the same problem, tried 1/2 , 5 mg tablet, tried alternate days, still no joy, had a great gp who found carbimazole liquid , took ages to find the right dosage to keep me within my well t4 range (14/15) I only take 0.86ml per day . Consultant had not prescribed this before or come across it but luckily agreed if it works for me then to keep using it.
The said gp has now left and another gp wasn’t happy because I wasn’t following the usual regime!! It is expensive as has to be made up specially every 5 weeks. I’m in uk and 66 so don’t have to pay for prescriptions.
Good to know ! Tucked in brain for future reference if needed and people say its not possible ! Might not be on usual approved nhs meds.....but is possible! A key qualification which is often not expressed....I have same challenge with meds for one son. Have to be so on the case....such an effort !
Hi, 5mg is such a low dose, my endo describes it as practically homeopathic. Your TSH reading is still low, so sticking with this dose will probably be fine for months. The only times I have gone on a lower dose than this is taking 5mg every other day. I find staying on 5mg stops me going hyper, keeps symptoms minimal and I’ve never gone hypo. If I stop taking it I generally get hyper symptoms despite normal readings, and eventually go hyper after 6 months to a year.
If you’re worried though, get in touch with your endo, that’s what they are there for.
I haven't properly taken into account the TSH level....think I thought well its not working and that it is not going to....so the carbimazole is doing all the work to sort T3/4....misplaced thinking on my part. Too many loving parts.....
Good pointers. ! And can see why endo is taking this course if action.
I used to get concerned if I didn’t get tested every 6 weeks. Over time I have learnt to relax and trust that nothing changes significantly and waiting 3 or 4 months is fine. My endo gives me an extra blood test form & says if I get symptoms (hyper or hypo) to get an extra test, maybe yours could do that. Hope all works out well for you.
There are actually 3 different kinds of these antibodies ,
the TRab / TSHRab test measures all of them together , it can't tell you how many of each sort you have , or whether you have all of one sort and none of the other.
The three different kinds are :
Stimulating ~ these fit onto the TSH receptors on the thyroid , and stimulate it to make more T4 / T3 just like real TSH does (they 'pretend' to be TSH) . These are the ones that cause the thyroid to make overly high T4/T3 levels in Graves disease.
Blocking ~ these also fit onto TSH receptors on the thyroid , but these ones sit on top of like a cap. , they don't act like TSH , they stop any real TSH activating the receptors. These blocking antibodies cause people to become hypothyroid , not hyperthyroid . (their thyroid simply isn't being asked to make any T4/T3, because the blocking TRab are stopping the TSH getting in).
Neural ~ they don't do much .
There is one test that measures just the 'Stimulating ones' (without the blocking ones) .. this is the TSI test ( Thyroid Stimulating Immunoglobin)
(measuring just the blocking ones is more or less impossible outside of research settings)
So...... when you have a high TRab result and haven't got a TSI result , you must deduce which sort of TRab are dominant by looking at their effects ..
eg. if the person has stupidly high T4 / T3 / low TSH , then most /or all of their TRab must be the stimulating sort.
but if they are actually hypothyroid with low T4 /T3/ high TSH , then most /or all of their TRab must be the blocking sort.
Most people seem to have 'mostly' stimulating ones and get Graves Hyperthyroidism and once those stimulating antibodies go away , they are in remission.
Endo's should wait until TRab result is low before taking patient off carbimazole ~ if TRab are still very high (and if the TRab are the stimulating sort) then the patient would probably become hyperthyroid again straight away.
also research has shown the longer the patient stays on antithyroid drugs even up to several years, the greater their chance of STAYING in remission
~ so don't be in too much of a hurry to come off carbimazole just because your levels of T4/T3 are kept under controlled by a very small dose .
your TRab are the ones calling the shots here ,
(it's also possible (but not very common) to have significant levels of both stimulating / blocking antibodies that fluctuate over the years .. sometimes causing hypothyroid presentation when blocking are dominant , sometimes causing hyperthyroid presentation when stimulating are dominant , sometime causing euthyroid presentation when stimulating and blocking are in balance ... thus confusing everyone)
Tattybogle that's really informative....thank you. Perhaps if the endo had taken time to explain I wouldn't be so frustrated. Thank goodness for the forums.
I kept saying to her I don't understand and what she is saying didn't stack up....had she told me more I can see the sense better.
But either way....4 mths to next review is a long way off....given the progress already made in 3 mths ..so I am going to see if I can get my GP to agree to doing a few more blood tests between now and the endo review end November... if not I will do privately.
And depending on what he says I will ask for a second opinion and get referred to another hospital...living in London am lucky to have some of the best endo clinics to choose from .
You are likely now better informed to understand that with Graves there is no quick fix and it can be a rollercoaster of symptoms and it takes great skill and experience on the part of the endocrinologist to manage this first phase of the disease.
Blood tests tend to run a couple of weeks behind symptoms and there is no way of controlling the immune system once triggered - but the longer you stay on the AT medication the better the longer term outcome for the patient as detailed in those links I sent you yesterday,
i agree ,..... 3/4 months is long time to leave it without another test ........ if it was me, i would want to know what my fT4 / fT3 and TSH were in about month from now while staying on this same dose.... don't assume they will fall further ~they may stay at this level, or they may go higher again .
It's mainly fT4 and fT3 levels you are interested in at the moment, because TSH can stay stuck on low for quite a while following a hyperthyroid episode , regardless for what fT4 / fT3 are up to.
if GP is not willing (or not able) to get NHS lab to run all 3 (fT4/ fT3/TSH ) , then private testing is relatively inexpensive and is often the easiest way to make sure you get both fT3 and fT4 done . (NHS labs often wont run fT3 even if GP asks for it)
eg . Monitor My Health is about £30 and there is a discount code available from thyroid UK ...... if you are in London area i think there are some new walk in companies that are very convenient/ cheap for blood draws . I can't remember the details but Jaydee1507 can give you details re. private blood tests i think.
TRab will have to be done by endo, as GP won't be able to order them .
TRab tests are also available privately i think.... but keeping an eye on fT4 and fT3 is the main thing to do for now , that way you can push endo to adjust dose promptly if they show it has become necessary .
You can get a Trab blood test through Medichecks - but since you are diagnosed and have the medical evidence of over range Graves antibodies - there is no point.
There is another option of "block and replace" which is a combination of Carbimazole and a low dose of Levothyroxine. Even the smallest dose of Carbimazole sent me Hypo, but stopping Carbimazole completely meant I went Hyper. "Block and replace" stopped the worst swings of my hormone levels/symptoms.
I believe that it used to be more common, and may still be first line treatment in some areas. Maybe something to discuss with your endocrinologist if Carbimazole alone is really not working for you?
Thank you Highroid. I've heard of it.... Will keep in mind....I certainly had the tip n balance in my head ..nit the detail of exactly when and how.
The other info on the trail makes it clear about the time lags....so I see there's not an immediate and direct correlation.....hence the watch n wait....urghh...patience not my virtue even when not hyper ..I am a fixer... now ....by nature!! 😀
Am speaking to nurse on Monday at GP who can authorise blood tests...she did get TraB for me when hospital messed up. So hopeful she'll agree to a monthly test...see how that goes so I can flag to endo if tipping low....and now keeping an eye too on TSH....I got that too from GP.
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