I have just been diagnosed with Hyperthyroidism (Graves disease) and I'm confused as how advocate for myself.I need pointers as to questions to ask the consultant when next I see him
What are the issues associated with the condition?
What can I do ensure the disease doesn't progress or how can stop it?
I think the first question is how were you diagnosed?
Have you had a TSH receptor antibody test? (TSI or TRab)?
We have seen too many members with high thyroid hormone levels where the diagnosing person has made assumptions.
You seem quite confident that it is Graves, but it feels necessary to make sure that you have been properly diagnosed.
Hello Psalm and welcome to the forum :
Graves is an Auto Immune disease and something has triggered your immune system to turn and attack your body - rather than defend it, and Graves generally only gets diagnosed when the immune system starts attacking the thyroid and or the eyes - two major organs that we need to try and keep and protect as best as we can.
The thyroid is a major gland responsible for full body synchronisation from your physicality and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism - and when it comes under attack and malfunctions your body can be in a heightened state in all areas and if not medicated Graves is considered life threatening.
However there are 2 thyroid AI diseases that can cause a myriad of uncomfortable over active, hyper type symptoms - and only Graves is prescribed Anti Thyroid drugs - Carbimazole or Propylthiouracil - PTU :
So to know for sure what thyroid health issue you have you first need to share with forum members your blood test results at diagnosis - which should be a TSH +T3 + T4 results and ranges along with with thyroid antibodies were found postive and over range in your bloods - and these look like readings for TPO - TgAB - TSI - TRab - or written as the TSH Thyroid Receptor antibody reading - with ranges.
I'm not sure you can stop it - but once on the AT drug you should feel more comfortable with symptoms alleviated.
What symptoms were you dealing with when you went to the doctor ?
The NHS generally allocate a treatment window with the AT drug for around 15-18 months - and with regular 6-8 week follow ups with new blood tests - as your T3 and T4 thyroid hormones fall back down into range the AT drug is reduced down - with the expectation that within around 18 months your thyroid will reset itself without the need for any drugs.
We do now have some research you might like to look at :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I found the most well rounded of all I read that of Elaine Moore - books and website - elaine-moore.com
but I had already had RAI thyroid ablation and found myself much more ill some years later when I started researching into this poorly understood and badly treated AI disease.
Thank you for the explanation. Result in August 2024
Free T3 = 7.8pmol/L
Free T4 = 16.4 pmol/L
TSH less than 0.01
Thyroid Peroxidase Ab = less than 1000 iu/ml
The T3 and T4 had increased since May
Thanks
Your TSH ' looks ' low - BUT your T3 and T4 do not' look ' that high -
as would be the case in most Graves Disease patients -
We do need the ranges on these blood tests to say anything more -
Your TPO antibodies = less than a 1000 - I don't know what this means -
in the UK the range for TPO is generally around 34/35 - and above this number likely means you are dealing with Hashimoto's - and this is not treated with an AT drug :
When the thyroid malfunctions you can have both Graves and Hashimoto's antibodies showing as positive in which case Graves treatment with an AT drug takes precedence.
Do you have any other antibody readings please - reading as a TSH Thyroid Receptor - or a TSI - a Thyroid Stimulating - or a TRab - a Thyroid Blocking & number ?
What was your TSH + T3 + T4 in May and was this your first set of blood tests after going to the doctor and what were the symptoms that took you to the doctor ?
Did the consultant prescribe anything for you - and what did he say was going to happen next ?
I had 2 blood tests in May, they were 1 week apart:TSH in May
Range 0.3 - 4.2
1st test May was 0.09
2nd test in May was 0.04
TSH in August
Range 0.3 - 4.2
My reading was less than 0.01
T4 in May
Range 9 - 24 pmol/L
1st test was 12.3
2nd test was 10.9
T4 in August
16.4
T3 in May
Range 2.4 - 6 pmol/L
1st tesr was 4.8
2nd test was 5
T3 in August
7.8
Thanks
OK - so your TSH is stuck down low suppressed and below the range throughout:
Your T4 is well within the ranges -
Your T3 is slowly rising and now over the range in the last blood test :
It could be you have Graves Blocking antibodies distorting your T3/T4 readings - because as they stand they don't look right and something is going on.
Graves Blocking antibodies - block both the TSH and TSI - Thyroid Stimulating Immunoglobulin from reacting with the receptors and this offers protection in patients with Graves Disease and contributes to hypothyroidism in patients with Auto Immune atrophic thyroiditis.
Essential to confirm that the Graves antibodies have come back positive :
TPO antibodies over 35 - is indicative of Hashimoto's AI thyroid disease.
Are you feeling ' sort of stuck ' in neutral - unable to do much - functioning but ' apart ' from what's going on around you ?
What symptoms are you dealing with - what has been suggested - have you been prescribed anything - are there any other health issues and / or medications being dealt with / taken ?
Were you put on any medication while you waited to see this consultant ?
I'm sure he said something about Graves antibodies. I started feeling twitches in my arms about 2 months ago. Also, at times my eyes are kind of red, then settles again. No medication has been prescribed yet, as I requested another test.
Consultant will contact me again in 2/3 weeks. Just overwhelmed at the moment.
OK - did the consultant take or arrange for you to have bloods run for the Graves antibodies or have the bloods been taken and run and you are waiting for answers ?
Apart from feeling overwhelmed - are you sleeping - with an increased appetite, losing weight, getting heavier though not eating - sweaty, anxious easily angered ?
If you are using any eye drops to ease discomfort please ensure all are Preservative Free - even those prescribed - are you also being referred to an ophthalmologist - if not - you might like to get checked by any high street optician as they have the machinery to see behind the eye and can refer you if necessary.
There are also TED clinics - Thyroid Eye Disease units - generally attached to the large teaching hospitals around the country where you may well find a specialist optician and an endocrinologist working together with a joint interest in thyroid eye disease treatment options, if that is what is happening with your eyes.
If you contact the Thyroid Eye Disease charity - you will be signposted to your nearest specialist unit - tedct.org.uk
I requested another test, which I will be going for next week. It baffles me how hyperthyroidism started because as of January my TSH was 2.24.What triggered all this investigations was because I wanted to do embryo transfer and the doctor ordered all the preliminary tests in May 2024. Then it showed my T3 was at 4.8 elevated. Then another test was ordered just a week after and it showed 5.7. In August 7.8.
TSH was 2.24 in Jan, then 0.09, 0.04 in May. Then in August it was less than 0.01.
I don't know what triggered this issue. I'm just overwhelmed and confused.
Have you had any other medications since January?
All sorts of things can affect the levels of TSH, FT4, FT3 and other tests.
helvella - Factors that interfere with thyroid tests
A summary of factors known to interfere with thyroid tests.
Last updated 10/10/2024
Well that is actually very interesting -
A TSH at 2.24 shows a struggling thyroid - verging on going hypothyroid -
as with a euthyroid ( normal ) thyroid the TSH would be 1.20-1.50 - with symptoms of hypothyroidism starting to creep in when the TSH goes over 2 .
Your T4 has been 22% then 12% and then 53% through its range :
Your T3 has been 66% then 72% and then 150 % ??? through its range :
Generally speaking we would expect to see a T4 at around 50% through its range with the T3 tracking behind at around 45% / 48% through its range.
So as you can see your T3 and T4 results are inverted as your T3 is higher in the range than your T4 - which means something is going on.
Please check my maths - as I don't have a calculator - just a pencil and paper !!
Have you been through this embryo transfer situation before - and have any comparison readings ?
Stretch out your arm and look at your hand - is your middle finger quivering at all ?
My TSH has always been between the 1.48 and 2.24. The GP has never once drawn my attention that there is an issue.
The only way I knew there was an issue was because of the preliminary tests before embryo transfer.
My arms were twiching, and I noticed my eyes were somehow red on and off for about since January
Moreso, I was having excessive headaches around the beginning of the year, which I attributed to stress, then the headaches stopped.
I have never had any embryo transfer because I got pregnant naturally shortly after egg collection in 2016.
Well Graves is a stress and anxiety driven AI disease - but we need the Graves antibody reading to know for sure - something is going on - and needs sorting as you must be feeling upset with all of this :
Have you had a venous blood draw for the Graves antibody and now just waiting on the results ?
I'm surprised the Graves antibodies were not run in May as none of your results ' look ' normal and all needed further analysis.
Please bear with me...what is venous blood test?
A blood test using blood extracted from a vein.
The completely usual phlebotomy approach used everywhere - except fingerpick tests, etc!
When the blood is drawn out of your arm and into a test tube :
All the 3 blood tests done have been at the hospital by the phlebotomist
They only told me it was slightly elevated and the Dr referred to the endocrinologist. I had to wait until I finally saw the endocrinologist few days ago, who said it Graves disease.
Is there a cure or better ways to manage this issue.
I'm really baffled
There is no cure - it is an Auto Immune Disease as I detailed earlier.
Graves is a poorly understood and badly treated Auto Immune disease and there is no way of stopping your immune system from attacking your thyroid and or eyes once your immune system has been triggered.
It is overwhelming - and for some there is something of a brain / body mismatch in what you think you should be doing but with your body very weak and unable to do much at all.
Just try and rest up and take things one step at a time -
Once I was on the AT drug I found I felt much better and imagine this will be the next step for you after they have confirmation that you have positive Graves antibodies.
Try and turn off - find something you enjoy doing and hopefully at your next appointment a treatment plan will be discussed and you'll be out of this limbo land which is never a nice place to be as it is very unsettling.
I appreciate you candid insight. It has been an eye opener.
Will be going for the usual eye test next week Should I mention the new diagnosis so they can check my eyes more closely?
That is opportune - yes - I would certainly explain that your consultant thinks you may have Graves Disease and that you have had some strange symptoms associated with your eyes.
I hope I've helped a bit - it's all a bit daunting - you can always get help on here - and we will continue to help and support you through this phase of ill health.
I don't quite understand why you need to wait a few more weeks to see the consultant again - but maybe if there isn't an antibody blood test - this is the reason :
I will definitely speak with GP next and request an antibody blood test. I really appreciate you. You have been very kind and informative.
I will keep the forum updated.
If I may add, the consultant did not seem bothered , only saying he would put me on medication and advised the IVF team to put the embryo transfer on hold pending the time the thyroid issue is brought under control.
He ordered another blood for me on the day, but I could no longer wait due to the queue, so told them I would do the test next week.
I do wonder if the antibodies haven't already been done.
As a rule the Laboratory run a casade system of blood tests -
which basically means they first analyse the blood for TSH blood test -
and if the TSH doesn't look right - they then analyse for a T4 result and if that doesn't look right they then analyse for a T3 result
and I thought - automatically analyse for the thyroid antibodies so as to ascertain the reason why the TSH- T3 and T4 do not look right - and whatever antibodies were found positive and over range - was the diagnosis.
So you seem to have TPO antibodies for Hashimoto's and just wonder if the laboratory found Graves antibodies as well - and why your T3/T4 results look as they do -
as generally for both Hashimoto's and Graves we see much higher T3/T4 blood test results -
which makes me think you have Graves Blocking antibodies restricting your thyroid hormone production - but even so it is a very uncomfortable place to be and you need these symptoms relieved by prescribing one of the Anti Thyroid drugs - probably PTU if planning to become pregnant.
Ask you doctor as she should be able to see all the blood test results on her computer and maybe ask at reception that you would like to arrange online access to all your medical records held at the surgery so in future you can read ' stuff ' as it comes in and ask here for clarification if not sure what it means.
The receptionist will likely ask you for some means of ID and give you a form to fill in for online access as we are all now legally entitled to see and read all of our medical records.
Online access is only usually available in England! I haven't seen any mention which of the nations psalm18 is within.
In England. I have access to Patients Knows Best online medical records.
Yes - thank you - I got carried away with it all :
Shall I add result?
Results of what - if important - and looking for replies start a new post - and give a brief summary of what we have already discussed.
We tend to try and answer all posts within the first 24 hours and no one but me will see it here - and you deserve more than my pair of eyes and comments -
forum members will look back at this post -
which has now probably run its course - in forum terms :
Result for Hyperthyroidism (Graves disease)
I will post it then.
Ok then - I'll look out for another post from you:
Am I allowed to post the result?
Of course you are - you were posting results yesterday - so go for it !!
Just thought I should post the full result, so people can better advise or give pointers to the questions to ask the consultant.
Yes - start a new question / post when you have new important information -
as then we all can see what is going and help you better understand where you are in this phase of ill health.
Most important way to gain information to advocate for yourself if to obtain your test results. Learn what information doctors are using to treat you and ensure they are testing what actually needs to be tested & focusing on the right aspects to tailor treatment to you as an individual, not a rough plan which will probably suit most.
Have you been started on any treatment. such as carbimazole, propranolol? Have you met specialist? Endocrinologist yet, or are you waiting for appointment?
Confirming cause of hyper important as hyper can be transient. They are several thyroid antibodies. Which have been tested?
Gluten issues can be strongly associated with thyroid autoimmune. Have drs screen for gluten allergy?
Nutrients can take a battering when thyroid abnormal. Important to test folate, ferritin, B12 & Vitamin D.
Thyroid funtion includes TSH, FT4 & FT3.
Eyes issues can sometimes occur with thyroid issues. So report any problems with eyes.
I just got diagnosed few days ago. Will do another blood test next week. Then the consultant will contact me again in 2/3 weeks time.I will contact my GP for Folate, Ferritin, B12 & Vit D tests.
I'm confused with the diagnosis.
Typically graves presents with very high eg over 2x or 3x normal FT4 & ft3 with rapidly appearing & severe symptoms.
Hashimoto’s or Autoimmune thyroiditis tend to have fluctuations with elevations then drops, a mix of symtoms can occur.
Then there is non autoimmune cause, a nodule can cause a very gradual rise. I’m my case over many years TSH dropped first , then FT3 rose with FT4 trailing behind. Symptoms can go unnoticed.
Only monitoring & testing correct antibodies will establish what the underlying issue is.
Persisted elevated FT4 or FT3 requires treatment. But if FT4 & FT3 in range & drs think the low TSH must be corrected that must be done very subtly if at all.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
what are your main symptoms
As others have already said…..these results don’t seem high enough for Graves’ disease
We see far too many knee jerk assumptions by medics that low TSH = Graves
Result in August 2024
Free T3 = 7.8pmol/L
Free T4 = 16.4 pmol/L
TSH less than 0.01
Please add ranges
TPO ……result is unclear…..range is usually under 34 negative
Over 34 positive. If result is more than 1000 that suggests Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid phase before becoming increasingly hypothyroid
What time of day was test done
TSH highest early morning
ESSENTIAL to test vitamin D, folate, B12 and ferritin
Plus TSI or Trab antibodies for Graves’ disease
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Graves Disease antibodies test
Requires private blood draw…..not DIY finger prick test
medichecks.com/products/tsh...
Good info on Graves’ disease
ncbi.nlm.nih.gov/pmc/articl...
Ranges:T4 (9 - 23 pmol/L), my results in Aug 16.4, May 12.3 and 10.8
T3 (2.4 - 6 pmol/L), my results in Aug 7.8, May 5.0 and 4.8
TSH ( 0.3 - 4.2), my results in Aug less than 0.02, May 0.04 and 0.09
Another blood test be done next week. The consultant will then contact me in about 2/3 weeks.
Thanks
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