I wondered if someone would mind offering me some reassurance at all. I posted a few weeks back regarding being diagnosed with hyperthyroidism as my blood results showed suppressed TSH, but higher then normal T3 and T4. I went on to have my antibody blood test 2 days ago and the results have come back that my thyroid levels are all normal again and that I was negative for the antibodies.. my doctor has said that this raises more questions then answers though as it now means something else it most likely going on as it sounds like it now may be sick thyroid syndrome.
My question is, what can cause this....I’ve got myself so worried. I suffer heathy anxiety and I just don’t know what to think now.
So sorry for the ramble.
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Pickles79
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Carbimazole is not correct treatment for Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have or Graves
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
thriva.co/tests/thyroid-test
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Graves Disease antibodies test
medichecks.com/products/tsh...
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Can be slightly raised with Graves
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thank you for replying SlowDragon. I did have my TSH, T3 and T4 tested 5 weeks ago I think, and then I had the antibody test 2 days ago. I’m not sure which they tested, it was requested by a consultant that I am meant to be seeing on the 6th July. The gp I spoke to this evening couldn’t really explain anything to me, other then saying all my levels are now in the normal range and that he thinks it sounds more likely to be something called sick thyroid syndrome which I’ve never even heard off.
When I had my antibody blood test, they told me it wasn’t a fasting test, was this correct?. Also...I’ve always been in the bottom of the normal range with my Vitamin D and have been asked to take supplements before by my Gp but I’ve not thought anything of it.
I’m assuming, and I apologise for my lack of knowledge but since my antibodies blood test has come back as normal, that must rule out Hashis it graves?.
So, apart from worrying you even further, did your doctor suggest you stop the AT drug ?
I think that might be sensible, if your symptoms have now reduced, and you feel more comfortable, as your levels of T3 and T4 are back down and almost in range.
How are you feeling ?
I would hazard a guess the blood tests will need to be rerun to confirm exactly what the medics ' think ' you are dealing with. At the end of the day they need medical proof evidenced by testing for the antibodies unique to Graves, either expressed as a TSI - thyroid stimulating or a TRab thyroid receptor antibody blocking blood test.
Hashimoto's also presents initially with a ' hyper ' phase and this is also a consideration that should be confirmed by an antibody blood test.
Please try not to worry, I know it's easier said then done, and if there's an Easter Egg hiding somewhere, I think it has your name on it tonight.
P.S. Having just read your reply to SD - If no antibodies are found and they have run all the tests for both Graves and Hashimoto's. and you are negative for both sets of anti bodies, I think it might be a question of wait and see, or maybe have a thyroid scan, or ultra sound.
Thank you Pennyannie for your reply. Yes the doctors has advised that I should now stop taking the medication and has also said I will need to get another blood test a few days before my consultant appointment so that the consultant will have the most up to date information.
It’s just so hard when you don’t actually know, I’ve never heard of this sick thyroid syndrome and from my understanding it means there is something else going on which is worrying. Generally I’m feeling absolutely fine, I have occasional bouts of diarrhoea (sorry) but no where near like I did when I first got the abnormal bloods and the main issue I currently have is not being able to sleep at night and yet feeling exhusted during the day. Honestly other then that I’m feeling fine xx
Well get copies of all your blood tests, and arrange them in date order and simply write your symptoms at that point in time alongside the results so hopefully you will see a pattern emerge..
Initially on no AT medication your T3 and T4 were over range and you suffered symptoms :
The second blood test shows a lowered T3 and T4 as now the AT drug is blocking your own thyroid hormones and I presume your symptoms have eased and you feel more comfortable :
At your next blood test, the AT medication will have been stopped and maybe fully out of your system and your T3 and T4 will have changed again, as might your symptoms :
I guess there maybe more than 3 blood tests but am just trying to detail a plan for you to do, to feel a part of all this and get some understanding on what the numbers represent.
Well, I haven't heard of this " sick thyroid syndrome " either and would hazard a guess it is a throw away term when " stumped " or not with the correct blood tests - I could be cynical, but I couldn't possible say !!!
It will all become clear, just keep us posted and we will get you out of the pickle should you find yourself bottled up. ???
properly called Sick Euthyroid syndrome or Euthyroid Sick Syndrome, i think .
It means 'Temporarily wonky thyroid function test results in the course of Non Thyroidal Illness...'
( Don't panic pickles -non thyroidal illness can be used to mean 'flu or chicken pox or anything else.)
What happens is when you are ill your body lowers Tsh temporarily to lower T3 because you're busy being ill , then it puts it up and makes more T3 to help you recover when the illness has peaked. (oversimplification but you get the idea)
This is why they don't rely on Thyroid Function Tests from A&E or acute hospital wards. Because the other illness sends them 'off' temporarily , so they wait till you are better first.
I think that’s what worries me though, I wasn’t ill, I only went to the doctors in the beginning because I was suffering with diarrhoea lasting 4 weeks so they did bloods to see if anything was wrong xx
I'm just popping off to have a brew and read your 'history' . so i know what i'm talking about, before i know if i have anything useful to add. In the meantime..... DONT WORRY.... WORRYING is BAD FOR YOU
And people here are very experienced in all the different thyroid antibodies, treatments ,blood test's etc . so even if your doctors are confused , and you are confused, it's OK ,we're not (well, not about thyroids anyway, i'm confused about how to work computers! But even that's improved since i've found my way to this forum.) You are in safe hands here i promise.
You have answered yourself here, so accept what you wrote in that you were not ill and just went to the doctor as you were suffering with diarrhoea for 4 weeks.
I think people have jumped to conclusions that now can't be substantiated with the antibody blood test and that you might have been put on the wrong medication, which is easily rectified, as is happening now.
Please stop worrying, you are between a rock and a hard place, and it's very difficult to question a doctor when you're not sure and have only been given limited information.
You're not alone and many of us have been there, and fully appreciate and understand how doctors can be when asked simple, innocent questions.
I need to say good night as I 've been on here much too late for me and was closing down when I spotted your name, and remembered writing to you once before :
A month ago you said you were going to wait until confirmation of Grave's before starting the medication. Why did you change your mind?
Your doctor is a bit of a wally, because Sick Euthyroid Syndrome would give you hypo results, not hyper results - the FT4/3 would be low in range.
However, if you have Hashi's, the latest results would make perfect sense. Antibodies fluctuate, so could very well be within range when they were tested - if, indeed, they did test Hashi's antibodies. But, you would have had the high, hyper-like results to begin with, as mentioned before.
If, on the other hand, the actually managed to test the Grave's antibodies, and they were negative, that would mean you don't have Grave's and should not be taking anti-thyroid drugs. It always amazes me that doctors have so little common sense they can't work things like that out for themselves. But, it is ultra important that you find out exactly which antibodies they tested for, and exactly what the results were. You really just cannot take these things on trust. It's your life they're messing around with, there. You must take an active part.
Because and I have to be honest Greygoose, I was a wuss. When I spoke to my GP regarding delaying the medication until I spoke to my consultant, he was really quite unkind to
Me and made me feel a bit small. I know I should of stood up to myself but I’m quite weak in that sense, I wish I wasn’t believe me.
I plan on calling them again tomorrow and asking for the new results so will of course let you all know.
It was when I said to him, why would I have had the abnormal results 5 weeks ago and now they are normal that he said something else must be going on that is affecting the Thyroid and said I have this sick thyroid syndrome.
If I didn’t have you all on here helping me, I would honestly feel truly lost.
I agree with Wetsuiter in her opinion of your GP! We all know that doctors are going to use those tactics: blame the patient, belittle the patient, make the patient feel stupid/a hypochondriac/a whiner/an attention-seeker. It's nothing personal. The majority of them do it to cover up their own inadequacies. We have to ignore that and stick to our guns - and just remember that the majority of doctors have no idea what they're talking about when it comes to thyroid - and probably not for a lot of other things, either, in my experience! You probably already know more than he does, anyway. And, he doesn't even know what Sick Euthyroid Syndrome is, or he wouldn't have suggested it, given your results. Just see him for what he is: a fraud and a bully. And, someone who is likely to make you very ill if you don't stand up to him.
What's more, even if he does prescribe something you don't want to take, there's no law that says you have to take it. Just shove the prescription in your handbag and forget it - you have a good excuse for forgetting: you're hypo!
Hi pickles, If you go to this post and then open the link it's talking about and go down to #6 (b) you will see a clear diagram of what sick euthyroid syndrome does to your thyroid blood test results .
As to your situation. i think they possibly haven't done the definitive graves antibody test yet (TRab or TSI , which as i understand it, is usually only done by the Endo). but have done what is usual at GP level (TPOab orTGab)
So when you call , don't ask for explanations of whats wrong , they dont know yet, just ask for YOUR Thyroid Function Test results, and to be told What Antibodies they have tested for. You would like the results AND the lab reference ranges .
Just keep asking clearly until they say how they will give them to you. You want them for YOUR record , because you are taking an interest in YOUR treatment.
(which possibly hasn't been very good so far if they gave you Carbimazole without testing you for Graves antibodies first, since by the sound of it you were not having a racing heart or any major problems other than an over fast digestion system and insomnia )
Anyway, don't worry, and you mustn't feel silly or weak, it suits them for you to feel that way and they encourage it. You just want to find out what's being done to you before you agree to it. It's perfectly reasonable, don't allow them to make you feel otherwise just because their ego feels threatened.
It could be your thyroid results go back to normal, or it could be start of Hashimotos, or it could be Graves (but i doubt it), or it could be a non thyroidal illness messed them up temporarily, the only way to know is interpreting test results , (antibodies,the right ones!,TSH, FT4,FT3), and symptoms . So i'm not sure what you have, but i am sure that with thyroid issues you are a lot better off if you can see and understand your own results.
It's past my bedtime now, so i'll say nite nite and trust that if i've said anything stupid someone will correct me.
Thank you all so much for your replies, I’m so grateful.....I’m feeling brave reading all your encouraging words so I will phone my surgery when they open and demand to see my latest test results xx
Please just ask for copies of all the blood test results with the ranges, and any antibody blood tests that are been undertaken since your initial appointment in April / May 2020.
It can be upsetting having to do this, I know, but it is your legal right :
Guess it's a bit like asking for your bank statement, and just getting out a balance, and not being allowed to see the transactions. ???
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