hi everyone could these results cause anxiety? Waiting for my first endo appt mid May but really struggling rn Thanks
Se Thyroid Peroxidase Ab Con
Normal range <34
Nov 119 KIU/L
April 84
THYR REC AB
Normal range <1.8
Nov 2.8 u/L
April 2.2
Thyroid Function Test
Free T4 Level
Normal range 12-22
Oct 34.8 pmol/L
Jan 12.7
Feb 14.7
March 16.9
April 18.7
TSH Level
Normal range 0.27-4.20
10 Oct 0.01 mu/L
Jan 0.04
Feb 0.22
March 0.15
April 0.17
Hello Kiki :
I think we do have a positive, over range results here for Graves Disease as you detail :-
Thyroid Receptor Antibody readings in November at 2.80 with April at 2.20 with the cut off being 1.80 :
You also have high over range TPO antibodies so I believe this is a positive for Hashimoto's - which can run alongside Graves -
but Graves treatment takes precedence which is the Anti Thyroid drug - Carbimazole that you did not tolerate and stopped.
There is an alternative Anti Thyroid drug - PTU - Propylthiouracil -
and suggest you get this prescribed immediately to replace the Carbimazole -
go to A & E explain you are waiting an endo appointment and need PTU medication as you can't tolerate the Carbimazole.
Thanks for replying. I really struggle to understand it all. I didn’t know you could have both graves and hashimotos
You can have slightly raised TPO antibodies with Graves’ disease
It doesn’t necessarily mean you have Hashimoto’s as well as Graves
Are you taking any Carbimazole now?
No not taking Carbimazole cos it gave me a rash all over for weeks
Yes - but Graves treatment takes precedence and must be medicated - which is with an AT drug : Carbimazole or Propylthiouracil - PTU for short.
Apart from the hives did the Carbimazole resolve any symptoms ?
There is no immediate treatment for Hashimoto's and only when you become hypothyroid is T4 - Levothyroxine prescribed. -
The Carbimazole brought the levels down according to my bloods I might just go back on it till the apt
Well you need to do something and in the short term if you have some Carbimazole there - let's just get over the weekend - and hopefully loose this crippling anxiety -
and when thinking more clearly next week - get a prescription for PTU - Propylthiouracil -
if you can't face going to A & E today.
Thanks I just rang 111 as someone told me you can get appointments for a&e through them rather than walk in and wait all day but he was unhelpful and could barely speak English 
Just took a Carbimazole tablet and will possibly go to a&e Monday morning when it’s not full of drunks! Thanks again
OK - well I guess it's a good idea to have an appointment if everybody else does -
so you have a plan - try and rest - and I hope the Carbimazole kicks in quickly and these symptoms relieved.
Thank you. Someone else has just replied saying I shouldn’t take the carbimazole . I’m so confused
I'm not surprised you are confused.....but I still think those of us who disagree with your treatment are correct
Carbi will reduce/ block your thyroid's hormone production making you more HYPOthyroid.
Anxiety is a textbook symptom of hypothyroidism!
healthunlocked.com/thyroidu...
I've just looked back at your previous posts and found the above...
See replies in that post from greygoose and SlowDragon They are more experienced than me!!
It backs up my suspicions that your diagnosis and Carbi prescription are wrong.......
I suspect that endo was a diabetic, not a thyroid, specialist
It also underlines how poor thyroid diagnoses and treatments are....it's a disgrace of monumental proportion.
She does have high TRab antibodies confirmed
The word "suggests" features a lot in info.
Is high TRab a definitive diagnosis for Graves?
Info didn't look as clear as that but I'm clearly no expert so very happy to be corrected.
pennyannie
Thank you both
So, providing all the dots are joined up, can we now be certain that Kiki_76 has Graves as a consequence of high TRab antibodies, and needs to be on block and replace?
The word "suggests" features a lot in TRab info.
Approximately 95% of patients with Graves' disease will have raised TRAb (BTF)
But, not all.
Like Kiki I am confused.
Sorry for pursuing this SD, but I was brought up to ask, "Why?" and I know I can be a pain in the proverbial as a result but...
what concerns me is her diagnostic low FT3 - 4.3 (3.1-6.8) before carbi was introduced.
The carbi would then have lowered FT3 further which could cause severe anxiety.
But, would FT3 not have been higher in her diagnostic test if she has Graves?
Her high FT4 didn't continue after a flare in October 2023 which I thought was a Hashi swing since by January 2024 it had fallen back into range.....although it may be swinging slightly again.
Would high FT4 in untreated Graves fall so dramatically?
Free T4 Level. Normal range 12-22
Oct 34.8 pmol/L
Jan 12.7
Feb 14.7
March 16.9
April 18.7
Re her rash...
The most common significant side effect of both drugs ( carbi and PTU) is a rash, which is usually a generalised itchy redness. It affects about five in 100 people who take the drug, and clears up if the drug is stopped. The other drug may then be used if this happens.
btf-thyroid.org/antithyroid...
I would be concerned about the low FT3!
Any comments welcome....I'm keen to learn!
I now press " Reply" with hesitation!
Knuckles poised to be rapped!!!
pennyannie
greygoose
Kiki_76
With Graves Disease - if TRab - commonly written as a Thyroid Receptor antibody or as a TSH Thyroid Receptor antibody is positive and over range - this is sufficient medical evidence of the disease : and TRab can be stimulating or blocking thyroid function.
However the 2 types of antibodies linked to Graves include a TSI - a stimulating antibody and a TBII - a thyrotropin binding inhibitory immunoglobulin and measures both blocking and stimulating antibodies.
In short either blocking or stimulating antibodies will be in charge of the thyroid at any given time but given enough time on an Anti Thyroid drug, these 2 extremes of symptoms can burn each other out leaving the patient feeling relatively normal, and the thyroid returns to normal function without the need for any medication.
So not all Graves patients experience high over range readings with some experiencing blocked low readings and the blood tests shared on this forum probably include results from when on the Carbimazole - so likely misleading.
If the antibodies are not controlled well by the AT drug and symptoms persist - where appropriate, Block and Replace is considered and then the dose of the AT drug is increased to fully block one's own thyroid hormone production and a measured dose of T4 is also prescribed so the T3 and T4 do not fall too far through the ranges.
My own experience was that I was hypo with Graves - the AT drug worked very well - relieved my insomnia - which was the reson I went to the doctor - and I had a brief spell on the AT when I was eating for England and losing weight for first time in 50 years and I felt fantastic - but sadly this was short lived as -
told at my very first hospital appointment that the AT drug was too dangerous to stay on long term and that I was to have RAI the following year -
I knew nothing back in 2005 and had RAI thyroid ablation and became much more unwell some years later with I believe the consequences of drinking this toxic waste - but found no help nor understanding in mainstream medical - details on my profile page.
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I know self medicate NDT and am much improved.
Graves is a poorly understood and badly treated Auto Immune disease - no 2 people's journey with Graves will be the same - though stress and anxiety tend to be common triggers and there is likely a genetic predisposition maybe a generation away with an elder having a thyroid health issue.
Graves can wax and wane throughout one's life - with some forum members having a stock of AT drugs in the medicine chest for when they sense their life stressors causing them issues.
Thank you for explaining that. What a horrid time you had it just underlines the disasterous state of thyroid diagnosis and treatment but good to hear things have improved.
My years of low cellular T3 took their toll before I became very unwell. Medics were clueless so I had to research and find the answers myself. High dose T3 has helped but as diogenes once explained to me the damage that has resulted from the low cellular T3 was all but irreversible...so I'm left with ChronicUTI, fatigue and muscle pain to name a few challenges!
Fortunately the severe brain fog cleared!
I hope Kiki has a helpful appointment in May, she too has had a challenging time......but, sorry, I'm still not convinced she has Graves.
My reply is written from my limited knowledge of the NICE guidelines and of the rules and regulations currently in place in the mainstream medical field where most of us find ourselves looking for help and advice when unwell.
I don't doubt and totally agree more research is needed - but the reality is this is where we are and the procedure currently in place.
Has nobody read this article? Everybody raves about Paul Robinson and Tania Smith yet I've only ever seen one person mention this article:
paulrobinsonthyroid.com/man...
And it makes sense to me because I still do not believe that Kiki has Graves'. Her illness presents more like Hashi's. And I think thise would back up that hypothesis. And I still maintain that carbi is not the right treatment.
Yes....I've read this article, one of the reasons I wasn't convinced about Graves/carbi
Thought I'd posted it.....bad day!
I'm a big fan of Tania Smith!
Hope Kiki sees someone who is clued up.
I was beginning to think I'd got it wrong... so grateful to see your reply
Difficult, from layout, to unpick your numbers but....
Your thyroid antibodies are high suggesting thyroid autoimmune disease/ Hashimoto's
This means your hormone levels can fluctuate
webmd.com/women/hashimotos-...
Hashi's is a common cause of hypothyroidism and this list shows the many symptoms that can arise
thyroiduk.org/signs-and-sym...
As you can see anxiety is a common hypo symptom
Your FT4 labs are fluctuating as mentioned above fluctuating
Are you being treated with thyroid replacement hormone. LevothyroxineT4 is the initial treatment?
No....block and replace....wrong!
The carbi is reducing the hormone produced by the thyroid....which you need!
You need a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate and ferritin
Your antibodies have been tested....so established.
3 months ago you said FT3 was 4.3 (normal 3.1-6.8)
Your TSH is also low which has been read as an overactive gland. TSH alone is not a reliable marker following diagnosis and treatment
thyroidpatients.ca/2021/07/...
This does not suggest hyperthyroidism.....but low FT3 clearly suggests hypothyroidism....yet your medics are treating you with Carbi which you are now reacting to.
You also said "my thyroid was overactive (38 with normal range being 12-22)"
So FT4 38 (12 - 22)
I suspect this high FT4 was the result of a Hashi flare which causes the thyroid to produce more hormone during inflammation. The rise is transient and should drop again as the flare eases.
I suspect you were wrongly diagnosed as hyperthyroid. when the Hasi's is causing hypothyroidism
Has anyone suggested a gluten free diet that can help reduce the inflammation
I hope this endo you are due to see has more idea about thyroid disease than the clueless lot who have been treating you
I'm not in a position to advise but in your shoes I'd be dropping the carbi and complaining about ( possible!) wrong treatment
Good luck....please keep us posted.
Take care
Thanks for replying. My own gp hasn’t treated me in any way apart from looking at original thyroid results and immediately referring me to endocrinology at the hospital. Because the wait is so long I paid to go private in the meantime and his suggestion was Carbimazole, when I reacted not long after taking it he said come off it and that was all I heard from him.
I believe we have positive and over range Thyroid Receptor antibody readings - TRab - from November 2023 and April 2024 - and why I have replied as I have :
Agreed
Hey everyone thanks so much for replying So I just rang endocrinology and explained how I’m struggling and asked if there’s any cancellations - they’ve got me in this Thursday instead of mid May! I did take one carb the other day after reading here but I’m going to stop everything now with the apt being so close. Might even stop my hrt. The only other thing I take is propranolol for the physical symptoms of anxiety. Do you think that would interfere at all with tests? Also I’m terrified of being fobbed off, told it’s borderline or some crap. I’m clearly symptomatic of it. Is there anything you think I should ask or scenarios I shouldn’t settle for so to speak? I’d imagine they’ll do every test given that I’ve waited 6 months to be seen. I’m so worried I’ll be seen by someone crap, basically!
Tagging those who have replied earlier so they will see your new questionSlowDragon DippyDame pennyannie greygoose
Thanks so much wasnt sure if they’d automatically be notified
Only if you click on the blu 'Reply' button under their comments. 
The only other thing I take is propranolol for the physical symptoms of anxiety. Do you think that would interfere at all with tests?
Not with the tests per se but propranolol does reduce conversion of T4 to T3 so if you're taking it, you will probably have a lower level of FT3 than if you weren't. I really don't know how that fits in with your scenario, if it would be a good or a bad thing.
I’d imagine they’ll do every test given that I’ve waited 6 months to be seen.
I certainly wouldn't count on that! Doctors are not very good a testing for thyroid as a general rule. Not sure they all even know what 'every test' is. Ask them what they're testing for and insist on any they leave out.
Oh no didn’t realise propranolol would affect thyroid. It really is a minefield isn’t it. What tests would you suggest I insist on please?
The basics:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
Thyroid Receptor antibodies
TSI
vit D
vit B12
folate
ferritin
You could also ask for an ultrasound of the thyroid, if you've never had one.
That’s great thanks. Yes I’m presuming as it’s in a hospital I’ll be having an ultrasound I will certainly insist. I had all this about twenty years ago, I remember there were two physical tests. The ultrasound and another one but can’t recall it properly. I think I drank a dye or a liquid.
How it works :
If you use the reply box directly underneath someone's reply, then that person gets an alert that you have replied to their comment .
If you rely to the post 'in general' (using the very top /very bottom reply boxes) , then the person who wrote the original post get's an alert (in this case that's you ... so you didn't get one)
If you want to alert more than one person , you can 'tag' them like i did to make their names go blue ... this sends anyone with a blue name an alert.
eg If i want to tag you , i start typing your name with an @ directly in front of it ( no space) Kiki_76 and a list of suggested names will come up below it ... click on the name you want , and that's it ... it will go blue ... and you get an Alert saying 'tattybogle has memtioned you'
Hello again :
Has the anxiety eased at all - has the rash returned ?
OK - that's really good news - just 3 days to wait :
Did you start the HRT around the same time and think it could be that then causing these symptoms ?
So you are planning on stopping everything - so apart from the Carbimazole and HRT what else are you taking ??
and just staying on the Propranolol for the anxiety - and this drug also slows down the conversion of T4 to T3 :
Well, you already have 2 TRab readings showing over range so I doubt this will be run again :
Graves is an Auto Immune disease - and is considered life threatening if not medicated - there is no cure for an AI disease - so an Anti Thyroid drug is prescribed - which simply buys you time while we wait for your immune system to calm back down - and hopefully your thyroid function return to it's normal rhythm and function - without the need for any medication.
Quite why your immune system has decided now to turn and attack your body rather than defend it is of course the 64 million $ question, and you are best placed to know the answer, if there is one.
There is likely a genetic predisposition to Graves with a family member probably a generation away from you with a thyroid health issue - everyone's journey with Graves is unique to them but stress and anxiety appear to be common triggers for this poorly understood and badly treated AI disease.
It might be suggested you switch to PTU - Propylthiouracil - since you did not tolerate well the Carbimazole which caused a rash which made you question this treatment option - and stop the AT drug - which then led to this the episode of anxiety becoming unbearable.
You have also the most recent research papers in one of my previous replies on this post - ( comes up in blue writing and you need to press on the link to access the information ) please read these again if in any doubt -
but I don't think any one wants to fob you off - it's just a shame that you have waited so long without the necessary acknowledgement. treatment and follow up to help you through this difficult first phase of Graves Disease.
Hi anxiety has eased a little bit I think that’s because I’m on leave from work and just chilling at home rather than normal day to day life.
No it’s definitely not related to hrt I’ve been on and off that for probably ten years.
I only took one Carbimazole so no reaction. When I did react to it it was after 3 weeks.
Thanks for your help it’s greatly appreciated
Also just learned my grandmother and her sister both had cysts on their thyroids which were operated on
The only other thing I take is propranolol for the physical symptoms of anxiety.
I used to be anxious and depressed. My problem turned out to be low iron and low ferritin (iron stores). When I got my low iron/ferritin as close to optimal as I could my anxiety disappeared and my depression was much reduced.
I also improved my Free T4 and Free T3 during the same period of me improving my iron/ferritin and obviously that has an impact on anxiety and depression too. But I think I got more relief for my mood problems by optimising my iron/ferritin levels than I did with the thyroid hormones.
Thanks for replying 😊 So my ferritin in Feb was 222 (normal being 13-150) so obv abnormal. My iron results had 4 aspects all were within normal ranges except % transf. saturation which was 43% in Feb (with normal being 16-40). Would that mean anything significant re anxiety? X
humanbean
Kiki_76
Serum iron 26.5 (5.8 - 34.5)
serum transferrin 2.47 (2.00 - 3.60)
se unsat iron binding saturation 62 (50 - 90)
% transf. saturation which was 43% (16-40)
There are slightly different reference ranges for transferrin saturation percentages but as a rule anything between 25-45% is good. It measures the percentage of transferrin (transport protein) that is saturated with iron, demonstrating how much iron is in transport, how much capacity is left to bind iron and move to appropriate sites (such as ferritin).
Your elevated ferritin has no direct bearing on the transferrin saturation% result as is a calculation of serum iron and bound (or unbound) transferrin only. However, the reason for your elevated ferritin (such as high/chronic inflammation) might influence how iron is working.
Was this iron panel taken at the same time as the transferrin saturation percentage was worked out as the calculations don't add up?
All iron results relatively fluctuate and as your transferrins saturation % is influenced by these it fluctuates also. I would say apart from your ferritin (which is iron storage) your iron results are very good.
EDIT - re your query regarding haemochromatosis to humanbean further down the page, your levels aren't nearly high enough. However, if you are still having periods this can disguise it. Mine was diagnosed as I went into menopause and all iron levels suddenly rose. If you have family with haemochromotosis, this would be something to remain mindful of.
My iron levels and transferrin saturation % are all kept to about 50 target level. Once this was reached and maintained I haven't noticed any interference with my thyroid hormone function/treatment.
humanbean and how did you optimise ferritin please
So, your ferritin is actually high, rather than low. That makes it more complicated for me because I was always trying to raise my iron and ferritin, not lower it. There is a possibility that you have a lot of inflammation and that can make your ferritin look better than it really is.
The best person to discuss this is radd I think. I'm sure she has had high levels of iron in the past. Hopefully she'll notice she's been tagged.
My iron results had 4 aspects
Could you post all four including the reference ranges. If you have a CRP or CRP-hs result you should post that too.
humanbean
CRP? 😊
Serum iron level is 26.5 with normal range being 5.8 - 34.5
serum transferrin is 2.47 normal range 2.00 - 3.60
se unsat iron binding saturation is 62 normal is 50 - 90
% transf. saturation which was 43% with normal being 16-40 = abnormal
CRP = C-Reactive Protein - a marker which rises with inflammation or infection but doesn't tell you where the problem actually is
CRP-hs is just another measure like C-Reactive Protein but is supposed to be a more sensitive version of the CRP test
labtestsonline.org.uk/tests...
labtestsonline.org.uk/tests...
Optimal for CRP or CRP-hs is under 1.
.
Optimal levels for iron results are given in this link :
rt3-adrenals.org/Iron_test_...
Iron is 72% through the range. This is higher than optimal suggesting you don't need more iron.
Transferrin is 29% through the range. This is fairly low in range suggesting that you lack capacity for additional iron.
Unsaturated Iron Binding Capacity is 30% through range. I don't know what is optimal for this but at least it is well in range.
Saturation is 43% which is over range according to whoever did the testing but is within the optimal range given in the link I gave earlier.
Saturation
• optimal is 35 to 45%
• higher end for men
Higher levels of the optimal range for Saturation are given as optimal for men, lower levels as optimal for women, so yours might be a bit higher than optimal for a woman, but not by a huge amount.
Your ferritin in Feb was 222 (13 - 150) which is obviously well over range at 153% through range. If you have a high CRP or CRP-hs then it suggests that you have inflammation or infection which can push ferritin higher by removing serum iron and storing it in ferritin. But since your serum iron is also higher than optimal it suggests to me that inflammation or infection is probably not influencing your ferritin much. So your ferritin and iron together are showing that you have rather too much iron in your body.
When people have very high levels of iron/ferritin/saturation then one treatment for it is to have "therapeutic phlebotomy" i.e. you have blood taken to reduce your iron levels and the blood is discarded. Your levels are generally higher than optimal but I don't think your levels are dangerously high. Some people I've read about with haemochromatosis had ferritin levels of up to 3000 when first diagnosed. But I think the NHS shows some interest in ferritin levels when they get above roughly a thousand, with saturation levels of 100%.
humanbean thanks
C reactive protein is 3 mg/L with normal being 0-4
I have wondered about heamochromatosis as I’m sure there’s elder relatives with it . hmm would that be something confused with thyroid issues or completely unrelated. Sorry I struggle so much with understanding this all
SlowDragon pennyannie DippyDame
Hi folks, had the endo apt today. He said it’s graves. He was a bit clinical (no pun) short and sweet type 🙄 As I previously reacted to carb he’s put me on 50 mg propylthiouracil twice a day. Probably 18 mths to 2 years. Said I’ll be called back in 3 weeks for an ultra sound. And six weeks to see a nurse.
Do you think I should take the two tablets morn and eve or in one go? I asked about treating the nodules, which presumably are there as there was some 17 yrs ago. He seemed to think there would be some. Said there’s a risk of killing off too much with iodine. But I don’t understand how tablets can fix the whole prob if it’s nodules too. I get how the iodine does it but surely if you come off the meds in 2 years time u just go back to the nodules causing issues? All this occurred to me after I left of course 😊 Thanks for previous replies x
Hey there :
Well the treatment for Graves will take precedence over nodules and because you have positive TRab antibodies and a diagnosis of Graves Disease- an Anti Thyroid drug has been prescribed - PTU - the alternative to Carbimazole.
All the Anti Thyroid drug does is ' buy you time ' while we wait for your immune system response to calm back down and your T3 and T4 fall back into the ranges without the need for any medication.
The NHS usually allocate a treatment window of around 18 months with an AT drug and then suggests definitive treatment if your T3 and T4 do not remain stable when taking no medication.
However the most recent research is suggesting the longer the patient stays on the AT drug the better the long term outcome - I think you have these papers already -
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
Many people have nodules - some take a small dose of the AT drug - some have no need to take anything -
and this will likely be reviewed once your treatment for this first phase of Graves Disease has hopefully resolved with your TRab antibodies negative and your thyroid rhythm and function back to normal - without the need for any medication.
P.S. Suggest to follow the consultants instructions regarding the dosing of the PTU :
Hope you have some piece of mind and the anxiety reduced.
Are you staying on the Propranolol ?
Hi and thanks so much for replying it really does help.
Anxiety has definitely lessened but still hanging around sadly 🙄
He didn’t actually say about the med, I didn’t realise it was two tablets a day till I picked them up from pharmacy. But I’ll have a Google as there’s nothing written down I think because it’s from a hospital pharmacy rather than high st. x
Probably best to take the PTU twice a day as the consultant suggested:
The Propranolol is a beta blocker and if still taking it - maybe continue - until you feel comfortable on the PTU and as I understand it you must come off Propranolol very slowly .
The body runs on T3 - and much like the fuel you put in a car in order for it to go :
Too low a level of T3 - though in the range - and you may well experience symptoms of hypothyroidism -
Just as a high level of T3 - and you will likely experience symptoms of hyperthyroidism.
The Anti Thyroid drug will semi block your new daily thyroid hormone production of T3 and T4 - and hopefully alleviate the symptoms being tolerated -
and we need to try and keep both the T3 and T4 in their ranges - at a level that offsets the hyper type symptoms being tolerated -
but not so low as to give you another set of symptoms - hypo symptoms - that can be equally if not more debilitating.
If you go into Thyroid UK - the charity who supports this forum there is a very detailed list of both hyper and hypo symptoms - maybe this might help you understand where you are in all this, as it is confusing, with some symptoms sitting in both hyper and hypo camps.
I'm clearly no expert....but you now have a plan to start with
Whether it's the right one will soon be clear.....I need to curb my cynical tendancies!!
I hope they also do a full thyroid test as greygoose detailed above
Keep an eye on that low T3
Please keep us posted(
Hi thanks for replying. Cynical in general or about my endo apt? What specifically does the low T3 mean? Sorry for all the q’s 😞 x
Test results help please
Help with results please
Test results
Could this be Hashimoto's
New blood results T3, T4, TSH
