Hi, is there a specific test to ascertain whether an episode of hyperthyroidism was due to Graves or Hashimoto? High free T3 and T4 (low TSH) at the end of Nov. Free T3 and T4 normalised by 15/12 but still undetectable TSH. Antibody test on 15. 12 thyroid peroxidase IGG AB 144 (range 0-50). Endo suggested Graves on the basis of this.
Antibody thyroid peroxidase IGG AB repeated on 2/2 128 (range0-50). Free T4 12.1 (was 18.6 Mid-december. Range 10.5-24.5).TSH still undetectable.
Previoys suggestions here have mentioned possible Hashimoto. Trying to speak to GP to convince her to carry out vitamin testing and a more specific antibody test to determine whether Hashimoto or Graves. On waiting list for ultrasound.
Written by
bgar11
To view profiles and participate in discussions please or .
Generally the NHS initially run an antibody test to determine whether you have Graves or Hashimoto's - both these auto immune thyroid diseases can manifest in a similar way but the treatment for each is very different, so the antibody test simply confirms which antibodies are positive and then the treatment options for Graves or Hashimoto's started.
Graves is treated with anti thyroid drugs which block your own thyroid hormone production thereby allowing your high T3 and T4 numbers to rise no higher and slowly reduce back down and into range.
Hashimoto's over active symptoms are transient and will come back down into range by themselves and as this disease progresses your thyroid will come under further " attacks " and long term disabled, with erratic thyroid hormone production, and you will require T4 - Levothyroxine to make up for your own glands shortfall in production.
The antibodies unique to Graves are generally expressed as a TSI ( roughly translated as a thyroid stimulating ) antibody or a TR ab ( roughly translated as a thyroid receptor blocking ) antibody.
I believe you can get these tested privately but these must be run before treatment is commenced as this is the medical proof and evidence and on which treatment is based.
The above reads more like Hashimoto's, as there are some Hashimoto's antibody over range test results, and you say that the T3 and T4 levels are moving back down themselves which is how Hashimoto's progresses.
Thanks for your reply. So if my daughter could be prescribed one of the Graves specific antibody tests, we could exclude Graves if these came back negative. Endo didn't even mentioned Hashimoto's! I think he just thought high antibodies +an hyper episode =Graves.Is the fact that TSH is still undetectable compatible with Hashimoto's? Shouldn't this rise as free T4 and T3 lower?
TSH can alter slowly. Some of us find that it can get stuck too and never quite gets into normal range again. As Penny Annie has said Graves and Hashimotos get mixed up because often hashimotos (or autoimmune thyroiditis as some doctors prefer) can start with a hyper phase.
Well if he wishes to run the relevant Graves antibody test so be it - no medication should be prescribed until such time as there is a positive over range TSI or Tr ab :
Graves generally presents with a TSH at 0.01 and T3 and T4 numbers well over the ranges.
The TSH is the least important of all the thyroid hormone blood tests, and it may or it may very well not respond in the presumed, text book way.
What is important is where the T3 level is - do you have any actual blood test results and ranges for a T3 blood test ?
" Numbers normalising " sounds to me more like the T3 and T4 are coming down by themselves, and given enough time the TSH may follow the curve.
Hi. The problem is that endo is not running any tests at the moment. They are going to be repeated after 3 months. Yes, values lowered without medication. T3 was high at the end of November and was back within range on 15th Dec 5.5 (range 3.1-6.8). It wasn't tested, or not included in the copy of the results sent to us (trying to speak to GP to find this out) on 2nd Feb
If Graves was suspected I believe the antibody test would have been run to rule it in or out as Graves is considered by some to be life threatening if not medicated.
So I think he has covered his back and following the NHS procedure for Hashimoto's and possibly there has been some confusion over the actual words used.
Everything you say does not point to Graves -
T3 and T4 are not rising and out of control - but falling -
After this " hyper type swing " in thyroid hormone levels - the thyroid will try to come back on stream, and maintain normal function, but overtime, after further " attacks ' from your immune system, it will become necessary to support the gland with medication, generally T4 thyroid hormone replacement - to replace your own natural thyroid's reduced output - as when Hashimoto's runs it course the disease dies with the gland becoming defunct and non productive at which time you will be on full replacement medication.
It might help to read around the subject on the Thyroid uk website, as this is the charity who support this amazing forum.
There you will see how diet and life style can have a massive bearing on the immune system and many people recommend reading up on Dr Isabella Wentz .
I'm with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and now self medicate as I am unable to access full spectrum thyroid hormone replacement through the NHS.
Thanks for your reply. Sorry to hear that you cannot access the medication that you need on the NHS. It's really not fair. Yes, I want to look at diet and lifestyle changes and that's why I need to have confirmation from endo of whether the likely cause is Hashi or Graves. After seeing the December results (showing normal T3 and T4) he wrote, "In summary, Scarlet has Graves' disease however her thyroid hormone levels are normal at the moment. Therefore she does not need anti-thyroid medications however....... her thyroid function needs monitoring."That's why I'm so confused. I'll try to convince the GP to run Graves specific antibody tests to confirm or rule out Graves. I'll start looking at the Hashi diet. I can't understand why endo did not think that Hashi could the cause instead.
OK then - both Graves and Hashimoto's are auto immune thyroid diseases so the diet and life style suggestions still stand.
Both diseases can wax and wane over the years and antibodies will fluctuate accordingly as the diseases progress - the main difference here being that with Hashimoto's it's thyroid specific and tends to stop when the gland becomes defunct whilst Graves is for life.
I've just realised that when my daughter had her hyperthyroid episode at the end of Nov they tested TSH Receptor Antibodies which were high 3.51 (range 0-2 IU/L). Could this be why endo diagnosed Graves? In the later blood tests (mid-Dec and beg of Feb, in both of which T3 and T4 were within range) they tested thyroid peroxidase IGG AB. Are these different antibodies?If you really have Graves, is it possible that your free T3 and T4 go back down to values within the normal range, without taking thyroid medication, in two weeks?
So the TSH Receptor antibody is also referred to as TR ab :
Do you have your daughters T3 and T4 results and ranges from November ?
What were her T3 and T4 results in December and the beginning of February ?
All I can find above is a T3 and a T4 at different times - both in range :
What symptoms did you daughter have and how is she doing now ?
I don't have an answer and could say it's maybe just be a blip -
I'm presuming the endo is not too concerned as he's suggested this watch and wait procedure with a follow up scan to see in more detail the thyroid gland's overall health.
P.S. Many Graves people on diagnosis have levels of T3 and T4 well over range at around 3/4 times over the top of the ranges - so I'm thinking your levels are not high enough yet to justify starting treatment and since the thyroid has " righted itself " there is no need for anti thyroid medication.
The AT drug would have reduced the levels if the body hadn't righted itself, and think the endo is just keeping an eye, which is sensible, as once on the AT medication it's like being on automatic pilot and over riding the body's response.
Thanks for your reply. My daughter's symptoms (anxiety, palpitations, a strange feeling on her tongue and in her fingers) started at the end of November. She had her first thyroid test at the beginning of December. Free T4 24 (range 12-22 pmol/L) , Free T3 7.2 (range 3.1-6.8 pmol/L, TSH <0.01 and TSH receptor antibodies 3.51 (range 0-2 IU/L). No medication. only propranolol for symptoms. Symptoms started improving after a few days.Second test 15/12. TSH still undetectable, Free T4 18.6 in range (range 10.5-24.5) Free T3 5.5 in range (range 3.1 - 6.8) Thyroid peroxidase IGG AB 144kU/L high (range 0-50). Only intermittent and much milder symptoms.
Third test 2nd Feb. TSH still undetectable. Free T4 between 12 and 13 so in range. Thyroid peroxidase 128, so still high but lower than in previous test. No free T3 (don't know if not tested or omitted from my copy of results by mistake). Almost no symptoms at all.
Currently no symptoms (slight anxiety is something that my daughter occasionally gets anyway - even in 2019 when thyroid was tested and was fine).
So Scarlet's T3 and T4 have only ever been slightly over range.
The fact she has over range TR ab is indicative of Graves Disease and she needs to be monitored which she is - and the ultrasound will show up any long term thyroid damage.
The antibodies are actually released by the body to " clean up " the blood after the immune system flare up has finished attacking the thyroid.
So at this point in time, I think it wise to think about easing off the beta blocker - has this been discussed ?
What results do you have from 2019 and what symptoms was your daughter dealing with then, to warrant a thyroid blood test ?
P.S. You have a lot of papers to read and put under your pillow from those offered below from tattybogle :
If you would like to read further around Graves Disease, you might like to dip into the Elaine Moore Graves Disease Foundation website - run by Elaine who has Graves. Finding no help with her continued ill health, after RAI thyroid ablation in the late 1990s Elaine started researching Graves herself. She now has several published books under her belt, is a well respected and leading figure in all AI thyroid disease and her website offers an open forum much like this amazing platform where people help each other work through their thyroid health issues.
Hi, thanks for your reply. I really appreciate it. The beta blocker was only to be taken as needed, so she only took it in the first three weeks of December. She took it every day for a few days and then half a tablet on alternate days. She hasn't taken it at all since the start of the year.
In 2019 she had a bit of anxiety, but it was a stressful time at school. She had a full blood count + thyroid, but were told that all results were in range (I don't have a copy).
Graves is said to be a stress and anxiety driven auto immune disease :
Elaine explores this area is some depth and there is much to read on alternative, more holistic treatment options as we are looking at an autoimmune disease that doesn't just attack the thyroid - but only recognised medically when it " hits the thyroid " :
There is generally a genetic predisposition maybe a generation away with an uncle/aunt with a thyroid disease and a sudden shock to the system can trigger the immune system to attack.
The thyroid is the victim in all this and not the cause :
the cause is the immune system going a bit haywire :
Finding the triggers, learning how to recognise and manage the triggers will in turn calm down the immune system response and severity of the symptoms experienced.
When Graves hits the thyroid it's because the thyroid is such an major important gland that the symptoms caused can be said to be life threatening.
This is true as very high sustained levels of T3 put the whole body into an extreme hyper state and the symptoms can be frightening in extreme cases.
Many people experience mild Graves symptoms and have no need nor desire to complicate and compound their health further by considering the invasive, drastic action of forfeiting their thyroid.
After all, we are looking at an AI disease that is for life, so it seems to me, in very many cases, the option of taking long term anti thyroid medication when and if the need arises, a more sensible option.
Glad the beta blockers have been stopped, as these can have undesirable long term consequences, but understand the initial need - it's a massive learning curve :
You and Scarlet will need to become your own best advocates as Graves does seem to be a poorly understand and badly treated auto immune disease : so let us hope this current " hic cup " is just that, and her body coped, it righted itself, and this may well be all she ever has to experience.
Thanks for the info. Very helpful. I think she needs to learn to manage stress and anxiety anyway. I'm not aware of any family history of thyroid on my side of the family (I have asked relatives) but it could be from her father's side of the family. It seems that every time I ask, I am told about the discovery of a new family condition.Is it common that with Graves T4 and T3 go back down to the normal range, with no medication, within less than two weeks?
Many people with these levels of T3 and T4 would have no undue symptoms and unaware of even having a thyroid health issue :
But a blood test is just a snap shot at any given time :
I'm sure at any one time we all have antibodies in our blood, as they are there to keep the blood clean, fight infection, and protect us.
This particular blood test as shown up antibodies of Graves and Hashimoto's they can push, pull, and over ride each other, one taking dominance over the other and then levelling off :
It's all put much more eloquently, as you'll see, when you read the links kindly given by tattyboogle
Scarlet's levels were just over range and in all honesty not worth medicating and her body has adjusted and is working it out for itself like the well tuned engine that it is.
This could just be a " hic-cup " - it could be the start of more episodes - but currently watching and waiting seems sensible and prudent.
Thanks so much for all the info and advice. I hope that it will fully normalise (TSH and antibodies) and won't happen again (hope that it's due to a temporary inflammation) but will carry on monitoring. Is the diet protocol for Graves similar to the Hashi one?
I only learnt about my situation some 10 years after RAI treatment for Graves Disease. I had become very unwell and found little help nor understanding within the NHS and thought maybe that the Graves I had in 2003 had come back again.
I purchased Elaine Moore's first book, learnt that Graves is an auto immune disease, and as such is for life, and that RAI treatment can compound the problem and not solve anything for the patient. Her book also detailed all the symptoms I was then dealing with, though my doctor preferred to refer to me as a conundrum.
So I see myself more as a Humpty Dumpty having put myself back together again thanks in the main part because of a couple of books and this amazing forum.
I think diet and life style important factors to look at - as the question has to be why has this happened, what's going on and what can I do to help myself reduce inflammation, calm down my immune system response and get on with my life.
We know stress and anxiety are triggers so I guess it's time to look and see if these can be modified, talked through, and or changes made :
No two Graves patients have the same journey which probably explains why it is poorly understood as there isn't a road map to follow that gets everyone to the same end goal : it 's more about the person having a choice and a voice in what they want to do and what suits them best.
I've read of some people changing jobs, others demoting themselves : your daughter is in her exam years - maybe this has triggered her anxiety and stress levels.
I was actually verbally abused and physically threatened by a man I employed as my assistant manager - 4 months later diagnosed with Graves Disease. I just wished I had known then what I know now as going through the grievance procedure was futile, he told me it would be - no witnesses - and my company were worse than a chocolate teapot !!
Sorry to hear about the stress you had. I'm glad you have things under control now, it's just unfair that you cannot get everything you need on the NHS though. Thanks for all the info and advice.
It might sound strange but I now realise I've been suffering with stress and anxiety for very many years. Growing up the late 1940's left handed was a challenge and the undiagnosed dyslexia just another challenge :
I knew this last premedicated unprovoked attack on my person the last straw on this camels back : just didn't realise how serious a fall out I would experience -hindsights a wonderful thing - maybe if I come back again I'll know better how to handle myself?
Yes TSH Receptor antibodies are the same thing as T (sh )Rab = TRab So an over range result on these does indicate Graves.
Thyroid Peroxidase antibodies is the same thing as thyroid peroxidase IGG AB = TPOab
These are present in, and predictive of, hashimoto's , but a % of Graves patients also have them. So don't be confused that she has both.
(Similarly a small % of hashimoto's patients have some TRab but we never get tested so we don't find out. There are actually 2 kinds of TRab , one is Stimulating and causes Graves and the other is Blocking and causes Hypothyroidism, but it's not really possible to get the blocking ones tested separately ... too difficult technically)
But don't worry about this detail at the moment... mostly having TRab = Graves , and they have been tested so that's good .
The real worry would be them treating for Graves with antithyroid drugs if these hadn't been tested first.
I can find you some decent reading material about the crossover of the different types of antibodies in various thyroid conditions in a bit .
in the meantime in cas i forget after dinner it's somewhere in here :-
but there are many more articles on the subject of graves /hashimoto's / and the occasions where there are different types of antibodies in each and how that affects the possible swings from hyper to remission to hypo etc
Thanks for all the info. Will look at the articles. I'm happy that no thyroid medication has been given so far, but it would be good to know the likely cause so that we could look at specific diet and supplement protocols. I'm worried that, if the cause is an auto-immune disease and nothing is done to put it into remission, the auto-immune condition can permanently damage her thyroid or other organs.
Try not to worry .easier said than done i know, but from what i understand of the various autoimmune diseases, autoimmune thyroid disease is unlike most of the others , in that it specifically attacks the thyroid and not other organs, unlike some of the other autoimmune diseases that attack multiple organs. Also from what iv'e read .... (even though it is true that having one autoimmune disease is associated with developing more of them , and thus doctors look out for others as suspects when diagnosing, once they have diagnosed one) ..... it is very common if you just get thyroid disease first , that you never get any other problematic ones, whereas if you get one of the other ones first like T1 diabetes then it is more common to develop thyroid disease afterwards . if you see what i mean.
I'm pleased to hear you girl is doing OK at the moment and whatever was going on , her body has done a brilliant job of 'balancing'
Pennyannie has wise word about stress being a trigger , so hopefully .. relaxed mum = relaxed daughter = no more problems.
i can imagine how tough it is worrying about all that stuff... it's hard enough just dealing with everything that kids 'normally ' chuck at you to worry about. My daughters 22 now so life got easier on the 'stress' front a few years ago.... and she's cooking my dinner.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I was told I had Graves, but TSH Receptor antibody tests just in. Was it Hashi's all along?
Graves and antibodies
Blood results- have I been tested for Graves?
From Hashimoto's to Graves disease? What should they test?
Vitamin D and Hashimoto antibody load
