So my endo said I do not have graves, and I should remain on 20g carbimazole. I self reduced to 10g carbimazole as I could not sleep. I now have the following tests from private gp who believes I may have graves, and also menopausal - great day out all round!!!
Thyroxine T4 75
TSH 1.18
Free T4 12.1
Free T3 3.7
FSH 39.6 (menopause?)
THAB 319
Oopsy you need the lab ranges for your results as every area of the country can be different, I would be cautious of staying on 20mgs as you may hit hypo soon, particularly if the starting lab range is around 9 or 12?? I'm sure others will respond to, usually we find one thing is wrong and then others will follow, I'm graves, hashi, celiac, iron def, menopausal. Welcome oopsy!!👍💟
What a pain isn’t it!! These are the ranges by private gp:
Thyrox T4 75 (59-154)
TSH 1.18 (0.27-4.2)
Free T4 12.1 (12-22)
Free T3 3.7 (3.1-6.8)
THAB 319 (0-115) ??
FSH 39.6 (25-134 post meno)
I am really worried about going hypo which is why I was going to reduce carbi to 5g? I phoned endo again today but I’m not holding my breath! My endo appointment is not until October.
Oopsy
THAB319
Which antibodies are those?
There are Thyroid Peroxidase (TPO) and Thyroglobulin (TG) tested for Hashimoto's.
TSI and TRab tested for Graves.
What has the private GP based his opinion that you do have Graves on?
What has the endo based his opinion that you do not have Graves on?
If you do not have Graves then you shouldn't be taking Carbimazole, so if your endo is saying you don't have Graves why is he keeping you on Carbimazole?
I tried to post my results but it wouldn’t work.
Private gp:
Thyroglobulin 319
Thyroid peroxidase < 9.0 (0-34)
The endo tested TRAB who said it’s not Graves.
I have tried to phone endo but I just got a letter saying continue on 20g carbi, see you in October! I have rang again today as it doesn’t seem right.
I’m not sure why private gp thinks I have graves. I think she said something about the TSH levels? It’s all a bit confusing!
If you have a picture, you can edit your opening post and "Add a photo".
You can't diagnose Graves by TSH, it has to be by TSI/TRAbs.
THAB 319 (0-115) ??
So that's TG (Thyroglobulin) antibodies and they're over range. Apparently can be Hashi's or Graves. You need TSI/TRAbs tested.
Thank you. I have now posted my results. Hopefully they will make more sense!
So if thyroglobulin might be Graves, why has the endo said it’s not? Will endo need to test again?
Oopsy
So if thyroglobulin might be Graves, why has the endo said it’s not?
Most endos are diabetes specialists and don't know enough about thyroid.
It could be Hashi's even though Thyroid Peroxidase antibodies were negative with that test.
It could be Graves but to confirm that TSI/TRabs should be tested.
TSI/TRabs - if these have not been tested then I would insist they are before accepting a diagnosis of Graves and whatever medication they wish to give you for that condition. Graves can be confused with a Hashi's hyper-swing which is when the Hashi's antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. There is much confusion by doctors about this. The only way to know for certain is to test the Graves antibodies.
I have checked the endo letter which says:
TPO Ab 1.4
TRAB - come back negative so unlikely to be Graves.
Next appointment in October to test for nodules?
Could it be likely I still have Graves/hashis?
TGabs 319 (0-115)
That tells you that you have positive antibodies. Whether it's Hashi's or Graves I can't say.
Thyroid stimulating immunoglobulin (TSI) - presence of this antibody is diagnostic for Graves disease.
Thyroid stimulating hormone receptor antibody (TRAb) - is less specific than TSI.
Endo letter says "TRAB - come back negative so unlikely to be Graves". I would ask for TSI to be sure.
They really should have done all the tests to confirm whether it's definitely Graves before starting Carbimazole.
That’s really helpful. Thank you seasidesusie. I will ring endo and see if they can do TSI. If not, can it be done privately?
I don't know if you can get it done privately.
SlowDragon - did I see a post of yours mentioning Graves antibodies tests being available at one of the private labs, I can't find anything.
Yes
Private testing for suspected Graves - TSI or TRab antibodies
medichecks.com/thyroid-func...
Someone else on here found the test on Medichecks
Weird that it doesn't appear if search Thyroid tests
Oopsy i would recommend you get tested privately if you can't get any sense out of endo
As others have said, the important figures to look at are FT3 and FT4
You also need to test vitamin D, folate, ferritin and B12.
These are often low with Hashimoto's and Graves
Post results and ranges when you have them
SD
That seems to be only TRAb which the OP has had tested. She really need TSI and it doesn't look like they do it. Thanks anyway.
Thank you for clarifying that. I will try ringing endo again tomorrow, I’m not sure what to do after that ??
"THAB 319 (0-115) ??" I tried to look that up too! Typo for TRAb was the less interesting conclusion, but it could mean "To hell and back" 
Had to edit this as the first site gave information about something with a different abbreviation. Wikipedia makes it seem rather complicated, but seems to have the most information en.wikipedia.org/wiki/Anti-...
Jnetti
It was cleared up yesterday. TH was a typo, the OP meant TG (Thyroglobulin) antibodies. She posted a picture of her results in her opening post and it's clearly TG antibodies. So she has negative TPO but positive TG antibodies. Also she was told "TRAB - come back negative so unlikely to be Graves" but TSI antibodies haven't been tested.
Oh! Sorry, been rummaging down the wrong rabbit hole!
Couldn't read the OP picture very well so didn't even try, DUH 
Be careful of relying on the TSH figure, go by fT3 and fT4. Often a period of hyperthyroidism can suppress the TSH and down-regulate the axis meaning TSH remains low even if your thyroid hormone levels are not high.
My TSH seems like a higher number? Since I reduced carbi. The odd thing is I have been feeling like my old self lately!
Your TSH is about 'ideal' but your fT3 and fT4 are both low normal and usually a persons TSH would be high in this situation. If you feel well I'd stay as your are, if you start to feel hypo reduce the carbi. You may well find that your thyroid hormone levels jump around as this often happens in hyperthyroidism. Usually the thyroid eventually fails and you will need hormone replacement.
Oopsy im abit concerned that you are bottom of the range with your frees, if you stay o. 20mgsyou could hit hypo well before October, endos do like you to be hypo as they consider it to be less dangerous, you need to go down slowly I think 20mgs to 5 is a big jump, try 10 then retest In4 weeks again!! Steady does it, I did hit hypo in December and its taken me till now to be on small doses, be careful.👍
Tsh is irrelevent it your frees that count and they should be at the higher end of the range or just above mid range😁
I think that’s why I’m getting a bit worried. I feel bad going against endo advice but there’s no way I could have stayed on 20g. I have been slowly reducing as I’m so scared of going hypo.
I reduced to 15, then 10, currently on 7, I feel ok but but thinking maybe I shouldn’t go any lower than 5?
As I go lower I have been sleeping better. I have normal gp blood test in about a week.
Oopsy titrating like that is way too soon, you cannot go down like that in a matter of days or a week!! Your body will be totally confused, dose changes happen very slowly as it takes around 4 weeks for your body to adjust, I went hypo in December I'm OK now, your body needs a stable count of carbi to remain good, not taking different doses at one time, I know I've said it before I'm 12 months on now and managing 2.5 every other day, and probably got another few months on a different dose before I am off it, slowly don't be afraid its you will get their you may feel OK now but how is your body going to adjust if you keep changing doses? Carbi is quite a toxic med and you and your Endo should agree a dose, ring him and say your frees are on the lower end and your concerned if you stay on 20mgs you will go hypo, suggest 10 and a retest in 4 weeks, if that is agreed-stick with it and then if needs be lower again👍😁
Thanks Rmichelle. I appreciate all the support. It’s so frustrating that I can’t seem to get hold of the endo!
When I was taking 20g I literally couldn’t sleep, so I reduced to 15, then 10, I was sleeping better but waking up after about 6 hours sleep. I will stay at 10g now, and retest in a few weeks, but if my T4 is 12.1 I will definitely go hypo ☹️
I understand your frustration but don't worry, sometimes we have no control over our levels and with every effect of reducing meds sometimes this butterfly shaped thing will do what it wants too, my last blood test and the 2 previous ones my ft4 is 12.5 and my ft3 is more bottom than half way and with2 dose changes it still will not go higher,!! Ideally I want mine to be around 17 but I don't know whether it will rise until another dose change or Endo suggests coming off it, but he wants me to take it until 18 months are up😠 you have a long way to go yet oopsy.xx
Do you get really bad wind with hypo? I have been so bad the last few days! I hardly eat gluten, bread, pasta, doughnuts etc ...
Yes you can get digestive problems due to carbimazole its a well known side effect, acid indigestion etc, having thyroid disease whether hyper or hypo interferes with the normal workings of the stomach also hormones play a big part too, I too had really bad acid reflux yesterday and a lot of pain, carbi seems to irritate my hiatul hernia, try deflatine tabs😁
Oopsy what dose are you on?
I’m sticking to 10g for now, and will book blood test in about 4 weeks
Fab, never lower without getting bloods done 1st😀 sometimes it can take longer for doses to adjust in the body my slight change has taken 8 weeks this time.👍
It’s a pain isn’t it! I feel fairly ‘normal’ on 10g, but am still worried about being near the lower end of range. I’m hoping the next blood test might take me back up a bit x
Do not worry, if you go hypo which you probably will, it happens to most of us, you still remain on carbi, they will just reduce your meds again, hypo is not nice but neither is full blown being hyper and its more dangerous.😁 the aim of the game is for you to find a optimol level and remain there but most times we will ride the hypo train👎 remember though nothing works quickly with the thyroid its like a snail, even though you may have reduced very recently it does not really have a great affect yet, a few weeks later will give you a more general idea on how you are feeling. Be careful👍😀
Thanks. It just seems like every little change has massive repercussions. On 10g I feel quite tired but at least I’m sleeping now!
I’m just really annoyed how the doctors put you on meds then just expect you to get on with it.
I’m hoping I will know where I am a bit more after the next blood test.
My work colleagues are talking about the Xmas party and I’m thinking I can barely stay awake! I’m a right party pooper 😆
I'm afraid its a sad affair oopsy, us thyroid patients are badly treated, that's why you need to educate yourself with plenty of knowledge about your disease, never ever leave it to the gp or Endo alone.
I really understand where you are coming from with the social thing as its been a whole year for me, lol I need my sleep still, one thing you will notice is if you are exhausted and tired you will need to rest to regain your energy levels again, if I'm not in bed by 11pm then that's my thyroid plays up big time, stress is another thing that flares it up, lol do not know how you cope with night shifts!!
Yes I have noticed I need lots of sleep! Usually in bed by 10.30. Luckily I don’t work nights but sometimes finish at midnight 😴
I've started studying that Wikipedia article on TRAbs. It's beginning to make more sense why you were diagnosed with two opposite conditions:
en.wikipedia.org/wiki/Anti-...
"...thyrotropin receptor antibodies (TRAbs)… TRAbs are subdivided into activating, blocking and neutral antibodies, depending on their effect on the TSH receptor... Graves' disease and Hashimoto's thyroiditis are commonly associated with the presence of anti-thyroid autoantibodies. Although there is overlap, anti-TPO antibodies are most commonly associated with Hashimoto's thyroiditis and activating TRAbs are most commonly associated with Graves' disease. "
Thanks jnetti. Although I have to say it’s still slightly confusing. Science/biology was never my strong point ☹️
Some of that article was VERY technical and rather beyond me too. I wanted to be a doctor originally but didn't get good enough A levels. Sometimes I can be like a terrier digging away at something just for the sake of it. Seems I got mixed up anyway, lol x
New blood test results 
New results - normal?!!!
New test results just in!
levo increased and new results
New blood results 👎🏼
