This was my results from about 6 weeks ago! My TSH figure was the highest they’ve seen. Is it extremely high really?
Have since had my bloods taken again & my t4 is 6.2 and my tsh is 200.
I am now on 100mg levothyroxine 5 days a week and 200mg on weekends.
Can anybody relate to this figures? Are my first blood test figures as extreme as I was told?
How long until you start to feel normal??
It would be very helpful if you could get the reference intervals for these results - these are numbers in brackets after the result. e.g. TSH 1.0 (0.5 -4.5).
Your results are exceptional. I'm assuming you are in the USA or similar going by your fT4 numbers as they use different units to the UK. Your TSH is exceptionally high and your fT4 very low. Sometimes the TSH assay in particular can give false results due to antibodies interfering with the assay but in your case your TSH is consistent with your fT4. Congratualtions, you probably hold the record for the highest TSH!
What are your symptoms? This is very important, more important than the blood test results. You mentioned Graves' in your previous post, your doctor could have got confused and meant Hashimoto's but I would make sure you get a copy of all blood test results.
It is very important your doctor checks fT3 as well, it's possible that your fT3 was more reasonable and this is why you were not extremely ill. This would be rare but your results are rare.
You should start to feel better after about a week but it will take around six months before you get back to normal. When TSH goes this high it can take a month or two to go back to normal, even if your fT3 and fT4 have been restored to normal levels. Let us know your symptoms as this is important.
Thanks for your reply! No I am in the Uk. Only using the figures she gave me over the phone so don’t have the brackets unfortunately. I have asked for a print out wish is being posted.
My symptoms aren’t that severe, fatigue, muscle pain, slight dry skin. constipated quite often, loss of pigment on skin round my eyes and inner thighs, (not sure if that’s related lol), irregular periods, but that’s it really.
So when I asked when u start to feel normal, I’m not really sure what normal is for me!
I did ask again today was it definitely Graves and she said yes.
Oh yes, your fT4 does look like a UK number, it was the 0.7 that fooled me as it is incredibly low.
I would ask your GP to measure your fT3 or perhaps get it done yourself with a home test kit. It is incredibly important to get fT3 in your case as your results are so unusual, we need to understand what is going on. It's just possible you were converting T4 to T3 really well but it is important to find out why.
I seen u can get home kits I think I will try that. No doubt I will be posting back to let you guys know. Feel badI’m taking all the advice when I’m not able to give any back to anybody else on this forum lol
Don't feel bad! It's what this forum is for. Everyone here is willing you on and is happy to give advice and share knowledge of it helps you get well. 
😳 my TSH was 9 when I was started on Levo and I felt like I was dying. Most are started on medication at 10...
A TSH of 433 is very high.
Ok thanks for your reply! I don’t even know what to think now I’m baffled
Yes , that is extreme. very . 100 is extreme.... how you were still walking around with TSH 400 and nearly 0 fT4 is surprising to me.
Just goes to show how clever the body is at creating more T3 when it really needs to.
I'm not surprised they were astonished , i don't think i've ever see TSH go that high in any post on here.
Are u serious! The doctor rang a consultant and the consultant did ask if I was still walking and breathing...
Yep , i'm serious , but don't panic you're still here , and obviously incredible ! so i'm sure it will all be fine, and you'll certainly start to feel much better now you're getting some thyroid hormone in you . I imagine from looking at those numbers that you have been without enough for quite a long while.
p.s i'm obviously just an amateur.... mine has never been higher than about 8 as far as i know, and that felt like i'd turned into a sloth. There someone on here called TSH110 which i did think was quite impressive..... but i think you've just won the prize for 'not being in a coma'
Hi Groglgirlgg, I just wanted to say welcome to the forum as I’d missed your post from earlier this month. I want to reassure you that you will get great advice from the admin team and knowledgeable forum members and support from the rest of us who are still learning! Your TSH readings do seem very high; I’ve had very high antibodies but not TSH, so am unable to advise.
All I can vouch for is that getting my thyroid medication and key vitamins optimal has massively helped me. Going gluten free also alleviated many adverse symptoms. I’ve learned so much from this forum; far more than from any GP or Endo I’ve seen.
Thank you very much. I really appreciate this forum and everyone on it! I seen a post earlier about going gluten free so I will consider that in a few months too! They’ve booked me in for an echo in a couple of weeks also.
I did ask again today was it definitely Graves and she said yes.
I'm sure jimh111 will have something to say about this, but I can't resist commenting because I'm gobsmacked! Your GP told you you had Graves? Seriously? Well, I think I can say, without fear of contradiction, that you do not have Graves with a TSH of over 400. Graves is hyperthyroidism where the thyroid is over-producing hormone. Your results show hypothyroidism, where the thyroid is under-producing thyroid hormone.
So, did your doctor say why she thought you have Graves? I can only assume she thinks that TSH is a thyroid hormone. It isn't. It's a pituitary hormone. And in Graves it would be zero. I don't know how much you know about all of this, but your doctor really doesn't seem to know very much.
TSH - Thyroid Stimulating Hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it releases TSH to stimulate the thyroid to make more hormone. Your thyroid hormone - T4 - is extremely low, which is why your TSH is very high.
With Graves, it would be the other way around: zero TSH and very high T4. And, you wouldn't be prescribed levo, you would be given antithyroid drugs. So, I'm afraid your GP is wrong, and you don't have Graves, you have hypothyroidism of - so far - unknown origin.
Did she say if she'd tested your antibodies? Maybe that's where the confusion comes from. If she tested your TPO antibodies and they were high, she may be confusing Graves with Hashimoto's Thyroiditis - an autoimmune disase where the immune system slowly destroys the thyroid. If that is the case, then you are probably in the last stages of the disease, and your thyroid is all but dead. But, at least you are now on thyroid hormone replacement, so that's good, anyway.
Yes! I got the antibody test & it was high. It was a consultant in the hospital who diagnosed me with Graves. I wrote on my last post afterwards to check cause I thought it was associated with hyper,, and someone on it confirmed yes they must be confusing with Hashimotos. So today when I spoke to the doctor I told her this and she said yes it is Graves and went on to explain about how it doesn’t affect my medication and the fact that I have it isn’t relevant as such to me, but more to them incase I have other more complicated symptoms further along the line .
Well, I'm sorry, but I still think she's wrong. But, it does depend which antibodies they tested. Did she tell you that?
TPO and Tg antibodies are for Hashi's.
TRAB and TSI are for Graves.
But, whether it affects your medication or not, you just cannot have Graves with those lab results.
Yes I thought that too! Thank you. I dunno I can’t really say to the doctor I think your wrong and I know better can I 🤷🏻♀️ But obviously I agree with everything u have said, going by what I have read on this forum and other websites.
I understand your dilema. But, you really could ask them which antibodies they tested for. You do have a right to know.
My brains a bit past it tonight , but do you remember a month or so ago some of us talking about the TRab blocking type of antibodies .... as opposed to the usual TRab stimulating antibodies that cause hyperthyroidism. If i remember correctly , one of the signs of this is hypothyroidism with extremely high TSH.
If they 've found TRab that are the blocking ones it might explain the stupidly high TSH, and also might explain why they are still mentioning /Graves despite the obvious problems with that statement
( i think it's sometimes called " Graves Hypothyroid " Tania Smith did a piece about it. i'll have a look in a minute)
Sorry, I don't think I was around a month ago. I don't remember that discussion. But, would the blocking TRab also account for the low FT4? And, frankly, what are the chances of any endo knowing anything about that?
I agree they probably never heard of it (remembered now AAT Atrophic , Autoimmune Thyroiditis) but would explain 'Graves antibodies' (allegedly) being found with these results, and would also explain the rapid onset at young age and high TSH. Yes i think they would also account for the low T4 , they sit on the TSH receptors and block TSH from working, so therefore less fT4/3 produced, pituitary senses lack of hormone and sends out more TSH , which can't do anything cos receptors blocked.... repeat vicious cycle.
However my brain is done in , so will have to think about it properly in the morning .
I agree that is a possibility.
I have heard of that as well and I have had periods of being under active but my TSH has not reflected my T4 and T3. I found out that my useless Endo did test for Graves' Trab but he did not not put the results on his notes. I am going to have a more detailed test once the corona is under control because the hospital I usually go to has a lot coronavirus patients there at the moment. I think the whole country is heading for another lockdown so I am going shopping today for non essential items while I am still allowed.
Graves' could mean there were elevated TSH Receptor Antibodies (TRAb). TRAb includes TSH stimulating antibodies and blocking antibodies. These are referred to as: -
TSH-R-stimulating immunoglobulins TSI
TSH-R-blocking immunoglobulins TBI
So, TRAb can stimulate the thyroid or block thyroid activity. The TRAb test does not reveal which type but in most cases it is the stimulating type because the patient has Graves' disease - high hormone levels and low TSH. They can test for TSI but there is no TBI test available for clinical use.
To better understand what is going on we need to see results for TSH, fT3, fT4 and whatever antibody tests have been done.
To better understand what is going on we need to see results for TSH, fT3, fT4 and whatever antibody tests have been done.
Exactly! And, as I said to tattybogle , the odds that any endo would actually know enough about stimulating and blocking TRab to diagnose Graves on that basis are pretty slim. It's far more likely that said endo just doesn't know the difference between Hashi's and Graves and diagnosed Graves on the basis of high TPOab. Something that happens so often, I've ceased to be amazed by it. So, we really do need to see the full results before going off into the realms of fantasy about clued up endos!
It was the GP who mentioned Graves' but I take your point about endocrinologists. It's possible the GP knows the difference but just got mixed up at the time, they are under incredible pressure at the moment. Knowing all the results will be really helpful.
I thought it was mentioned somewhere that the GP checked with the endo, no? Perhaps I'm getting confused, now! lol
I went to hospital and the hospital doctor phoned a consultant and they together diagnosed Graves. Then when I spoke with my Gp yesterday she confirmed this. I will get my results and post to you guys. I really appreciate all your comments and hope I haven’t wasted your time by not posting complete results!
You're not wasting anyone's time , quite the opposite...( unfortunately for you) as you've suddenly become very 'interesting' .One of the best resources of this forum is the collection of real life examples, that people can find years later and compare to their own results. So by putting your results on here, and having this discussion , you are in fact already contributing and helping the next person who comes along with an astonishing TSH. Hopefully your odd results will have all the best endocrinologists fighting over your treatment.... they do like an 'interesting case'
My dad had a really unusual operation which meant they moved his heart to the other side of his chest, and for ever afterwards they'd bring in a room full of medical graduates to look at his amazing Xray's.... but it did mean he got the best consultant's.
hope you start to feel lots better in the next few weeks,
Tat
xx
That’s an astonishingly high TSH
Presumably you weren’t on any other medication before starting levothyroxine? .......(especially as there seems to be confusion amongst medics that you were hyperthyroid!!)
You will need to get vitamin D, folate, B12 and ferritin levels tested at next test
Low vitamin levels are extremely common when hypothyroid
Come back with new post once you get thyroid and vitamin results after next test
No I wasn’t on any other medication at all. Yes she did mention b12 and folate tests. Ok I will do that thank you
Your dosing pattern is bizarre.
I cannot see why you are expected to double the dose at the weekend.
In my experience, dosing as evenly as possible is very much to be preferred. For example, 125 a day is 875 a week - but would be far more even. Could even add in one extra 25 once a week to make it 900!
Certainly going five days at 100, then doubling to 200 for two consecutive days, would tend to see your T4 rise considerably on a Monday, then drop until Saturday.
If they have some specific aim, maybe they could explain to you. Otherwise it just looks like lazy prescribing.
I thought so too? I was wondering if anybody would pick up on that.
To be honest I think he just did it that way as he thought it would be easier for me to remember.
In the beginning I was on 75mg daily and then upped to 100mg daily. Then on Christmas Day the doctor from the hospital phoned me to change my dose to 200mg on weekends.
I phoned my own doctor this morning to see if she agreed with that and she did.
Hi. I cannot add a lot but I have Graves.
TSH <0.001 range 0.5-4.0
T4 100 range 10-22
T3 52 range 2.0-6.0
High thyroid stimulating antibodies
High TRAB
High TPO
Just thought that might clarify a simple case of Graves Numbers. Medication is carbimazole
Hi again Grohlgirlgg. I thought i'd give you a link to something that might help you understand the role of different antibodies in thyroid land. This article is what prompted me to mention AAT and 'blocking type' TRab (Thyroid Stimulating Hormone Receptor antibodies) in my ponderings last night .
I would not expect you to understand much of it at all, and i'm not suggesting you have anything in particular out of the various options, so don't worry... but there is a diagram of how the different antibodies relate to different presentations of thyroid problems, which might help with understanding when talking to Doctors, and trying to figure out what might be going on for you to get such high TSH number and still be walking about.
There's 2 pages:
thyroidpatients.ca/2020/04/...
thyroidpatients.ca/2020/04/...
There are many other good articles on this Canadian thyroid website that i have found helpful to understand how things work , (and how much is not yet known.) Mostly i find the pictures helpful
An issue that might have passed you by in this discussion.
Some people develop TSH-antibodies. That is, antibodies to the TSH your own body produces.
In such cases, the TSH-antibodies attach to TSH molecules and bind forming something called macro-TSH.
The biggest issue is that some laboratory tests are thrown by the presence of macro-TSH.
Imagine measuring how many currants in a cake. Then add some sticky cherries which attach to some of the currants. If you take the currants out, many of them will have cherries stuck to them. So when you weight the currants you also weigh the stuck-on cherries. So the result is higher than the currants alone.
The test used in some labs is unaffected by TSH-antibodies; that used by other labs is affected. If affected, TSH will read high.
I have no doubt that your TSH is very, very high. But as it comes down (assuming it does), don't place too much confidence in the lab results you see. It is possible that TSH-antibodies are exaggerating the test result.
(A common approach is for another TSH test to be done at another lab to check for this sort of test interference. They should take two samples at the same time and send one to each lab.)
A very valid point but fT4 was also very, very low. My instinct from my days of debugging computer programs is there is likely to be more than one thing going on. e.g. perhaps assay interference and antibody activity or some other combination of two problems.
Rundown of TSH, T3, T4
TSH reflex to free T4 
low tsh but still hypothyroid 
Quick t4 & tsh question 
LOW TSH WITH STABLE T4
