I discovered this forum back in August, after being diagnosed with Grave's and have learned sooooo much so thank you to everyone taking the time to respond to us 1st time posters.
Background info: female, 31, Sweden, very active
It all started a year ago in January when I got down with a sore throat and otitis for the 3rd time in 2 months. I had an appointment with a doctor, he checked my ears, throat etc...had me take a blood test (not thyroid hormones or antibodies though) but he did not find anything, all the values were "within range" (quoting from the letter I received afterwards). He said it was down to bad luck and maybe my immune system being a bit weaker in the winter, nothing to worry about.
Fast forward to the end of June - I was feeling terrible: constant pressure on my throat, ears ringing, exhausted, pulse sky-high as soon as I'd start moving, out of breath and at the same time, I just could not unwind, I was nervous, had tremors, brain fog, difficulty concentrating.
I am a very active person, love going to the gym, walking, running, I usually get energized from moving so this state was horrible and I was feeling really low mentally as well.
I got an appointment with a doctor again (different one) in July and, hallelujah, she had me take a full blood panel test, and here below are the relevant results of the blood test on which the diagnose of Grave's is based:
P/S-Anti-TPO 76 kU/L (<35 kU/L)
S-TRAK 6,3 IU/L (< 1,8)
P/S-T4, free 20 pmol/L (8-14)
P/S-TSH <0,03 mU/L (0,38-5,33)
I was referred to an endocrinologist who put directly on block & replace (Thiamazole 15mg x 2 morning + evening & after 2 weeks I also started on Levothyroxine 50 mcg)
I went on holiday in Greece and was surprised at how well I handled the heat there, no problem at all, felt better than I had in ages, even dared to take a slow run on the beach a couple of times.
When I came home however, and went back to work, I started having the same symptoms as before. I had a scheduled appointment with a control blood test and the endo increased my Levo to 75 mcg every other day. Did not make much of a difference. Walking to and back from work (15 min walk) would wipe me of energy.
New blood test taken in October, they only tested FT4 and TSH:
FT4 9 (8 - 14)
TSH 2,2 (0,38 - 5,33)
Was told to increase Levo to 75 mcg everyday.
1st of December, I decided, as I was still not feeling better and this latest test was pointing to going into a Hypo state/being under-medicated, to increase on my own to 100 mcg Levo every other day ( I would literally go to bed everyday after work and sleep until next morning for a few days, and then have several nights of insomnia, on repeat)
Blood test of December 20 shows:
FT4 9 (8 - 14)
TSH 4,8 (0,38 - 5,33)
Was told to increase to 100 mcg Levo a day and to take another test in 3 months, so end of March, which feels way to long if my TSH has increased to more than double the value it was 2 months ago, or?
My FT4 is still on the lower end, could that be a sign that my body is having difficulty converting to T3?
I know it is difficult to know without knowing what my FT3 is but they have not tested it, it is not something they look at apparently, I am considering taking a private test, quite expensive though and not covered by insurance of course.
Just this week, I feel okay actually, have a little more energy, don't feel like I just want to lay down and sleep away the hours/day but then I have also had a week off over the holidays where I have really only done what I felt like and listened to my body, no obligations. My hair is thinning and falling off abundantly, I have very dry skin but at the same time, I am still constantly warm and as soon as I do anything physical (like just a walk) I get so hot and sweaty, and the throat pressure (feeling of being strangled) comes and goes.
All latest communication with my endo has been by phone or letter so I haven't really had the opportunity to explain how I really feel - seems like the solution to all is to just increase the Levo dose.
My questions are: based on the first blood test, is Grave the right diagnose? Could it be anything else? Is it normal that my TSH just keeps on increasing? Does it mean I am under-medicated / going hypo? With Grave's, like with Hashi, can you swing from hyper to hypo and back?
Sorry for the lengthy post, I am a bit at a loss at the moment, just waiting for the next wave of exhaustion to hit me :/
Written by
MissSandraB
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Not quite sure what S-TRAK is. Would that be TSH receptor antibodies - TRAB? If so, then it is high, which does indicate Grave's. But, you do also have high Hashi's antibodies - TPOab.
Without knowing exactly what was tested, it's a bit difficult to know if the diagnosis was correct. But, I would thing that, although your FT4 was high, it wasn't really high enough to be Grave's.
But, no, Grave's doesn't swing between hypo and hyper, like Hashi's. It can go into remission, but I would imagine that, if you do have Graves, then your hypo results are due to taking too much 'block', and not enough 'replace'.
OK, so you do have Grave's, but looks like you could also have Hashi's at the same time. Which is not common, but does happen. Or else, the TPOab are just elevated because of the Grave's, which also happens.
Oh okay, thank you for the info, I didn't know that was even possible, maybe I should get the antibodies tested again - not sure if it is because my endo did not deem it was necessary or because she is actually a diabetes specialist and has no clue. There is very little Swedish literature on Hyperthyroidism & Grave's, and doctors are pushing towards removal of the thyroid (don't want that!!)
It's probably because she's a diabetes specialist and hasn't a clue!
But, there are plenty of people on here who know a lot about it - not me, I'm Hashi's - so hopefully, they will come along soon and give you the benefit of their opinions. Things are a bit slow on here, just after the Christmas holidays, so if you don't get more responses, don't hesitate to post again, asking any questions you might have.
Graves is an autoimmune disease and as so - it's for life.
Your thyroid is the victim of an autoimmune attack - it is not the cause.
There are options open to you - there may not be the necessity to remove your thyroid,
The thyroid is a major gland, it's there for a very good reason and presuming there are replacement hormones available that can, and might be prescribed is somewhat simplistic, but understandable, as this is what I thought !
Your body clock has been running very fast and it is probable that your vitamins and minerals are not optimum and that will pull you down further.
I have recently read that trials of a drug to eradicate the Graves antibodies are underway.
I would suggest you try and adjust with block and replace giving you time to read and research all the options available to you.
You might like to read :-
Elaine Moore Graves Disease A Practical Guide - This lady has the disease - there is also a very comprehensive website ( USA ) so medical protocol maybe slightly different -
Your thyroid and how to keep it healthy by Dr Barry Durant Peatfield - This doctor is hypothyroid - this book is an excellent back-up regarding everything thyroid.
Just to say I was never offered block and replace so am not in a position to say much, on this. There are people on there who this treatment option and feel sure you will receive answers on this aspect in due course.
I would think it takes time - fine tuning and monitoring of medications before you will feel more comfortable. As mentioned previously, your vitamins and minerals will have probably been trashed and it would be wise to get a full thyroid blood test evaluation including all the vitamins and minerals as detailed on this website.
Once with results your post will be picked up by those more knowledgeable and advise will be offered.
I was almost 60 when diagnosed with Graves and put on Carbimazole being advised this was for only 15 months whereupon I would have to have RAI - there was no discussion or other option offered, though, of course I now learn to the contrary.
I wish I knew of this site then !
Take good care, rest as much as your body allows you to, you are not well, and don't beat yourself up - if sleep is what you need, so be it - I trust you have been signed off from
Thank you for your insight! I do take supplements of Vitamin D, Magnesium, B6 & B12, Folate and digestive enzymes and have been for over 1.5 year as I went vegetarian but I will ask to have all minerals and vitamins checked at the next blood test, worth looking into as well.
Nope, I have not had any time off work except for the holidays I planned myself and the few sick days earlier in the year that I just had to take because I was constantly getting a cold/sore throat and otitis. Nor the doctor nor the endo even suggested it, apparently based on my blood work my case is not so serious, I guess I either just have to bite the bullet until it gets better or wait until I get so sick that I won't be able to handle work... I am originally from Belgium - Sweden is supposed to have one of the greatest social and healthcare systems but so far I am not that impressed :/
Yes, I had not been in need of a doctor for over 20 years - and trusted what I was told.
It's only now with the help of this site and others that I have equipped myself to question and ultimately I have now decided to self medicate as I can't access the correct hormone replacement with our NHS system.
As I understand things Graves is poorly understood attacking about a quarter of 1% of the population. It's not mainstream , and consequently that is why you need to take an active role in your recovery.
I didn't get a sick note either or any explanations as to my diagnosis - and I soldiered on working, believing now I was on the medication I would be OK.
Block and replace, I should imagine, is difficult, as previously suggested.
Finding an endocrinologist who knows how to manage Graves would be advantageous.
It's not the quick fix that the medical professionals state or would like to believe -
Having the RAI is a quick fix, but not necessarily in the patient's best interest.
It is the treatment of choice by our Nhs as it is financially the best option for them.
A 20 minute outpatient appointment - a toxic drink - and a discharge back to your doctor. One less patient on the waiting list - tick box exercise - job done. ???
My doctor knows nothing of Graves and has been instrumental in my being on here now.
Sorry, I'm rambling,
OK, I think you need to get the bloods done as mentioned previously and post again when those more able than me can understand and advise you. Try to get your doctor on side but if they will not help, obviously you'll have to get the tests done privately and maybe search for an endocrinologist who is recommended - I know, it' easy to say, and so much harder to do - xx
Considering you are of " child bearing age " you should not be offered RAI -
it may not even be an option - many countries considering this treatment barbaric !
Removal of your thyroid should be the very very last option - as I said before - your thyroid is the victim in all this, not the cause.
You will still have Graves Disease after a thyroidectomy - it may now not be life threatening but it can be life limiting, depending on the expertise of your doctor.
Graves is said to be stress and anxiety driven - any point in looking at your life - work balance and what's been going on over the past years ?
There is an element of genetic predisposition but something has probably triggered your autoimmune system to go " haywire ".
I have read Graves can come on because of a sudden shock like a car accident or sudden death. In my case I was verbally assaulted and threatened by a work employee and there were no witnesses and I received no support from my company. Five months after the incident I got the diagnosis of Graves Disease - joined the dots up some 10 years later.
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