I’ve just got my results back and I was expecting them to say why I feel so tired all the time, but apparently they are in the normal range ,my results are
TSH- 3.55 (normal range 0.30-4.50)
T3-4.5 (normal range 3.1-6.8)
T4. -13.4 ( normal range 11.0 -22.0
Serum folate 9.7
Vitamin B12 -396
Ferritin- 68
I really thought the results would show why I feel warn out , I guess this is the normal for Graves. ......(And when you try and tell people or family members how you feel, they just look at you, i don’t think they realise how much this can effect you ,) rant over ...
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Hi Mhymer, I understand how you feel. I've been experiencing extreme fatigue too. I've been complaining about feeling tired to my family and friends. I'm starting to feel like a stuck record. Nothing, I've tried thus far has helped with the fatigue, with the exception of yoga - somewhat. As a newly diagnosed individual, the support from my family has been amazing. My colleagues, particular my boss, and friends are not yet forthcoming but that's alright. I found this community today and I hope by reading what others have gone through will help me with my own journey. It has been an overwhelming experience. And I've cried a lot in the past months just trying to adjust and adapt to my new normal. It doesn't help that I got my diagnosis a few months before lockdown restrictions were implemented in my country due to the COVID-19 pandemic, which limited travel within the country. It also meant I had to go through this initial part of my journey without my family being physically there to hold my hand as we stay in different parts of the country.
I have a theory that the tiredness is coming partly from the anti thyroid medication! I am on a mega dose and although I do feel better I am always exhausted and still can’t focus.
Am not any medication at the moment, apparently am not bad enough yet.. I have got a blood test booked for next Friday, and I’ve listened to what people on here have said about getting it taken first thing in the morning, my last blood test was late in the afternoon so am hoping these results will show why I am so tired
Oh, did you test positive for the antibodies? Your results don't look like someone with Graves. My first blood test I had T4 50,6; TSH undetectable (<0,01)....Are you sure you don't have Hashimoto's/hypothyroidism?
Yeah my TRab test came back positive last year, I was really bad then my T4 was T454 , T3 23 and and TSH 0,01 .... I had the radio iodine treatment before Xmas , this is the second time this happened, the first time happened about 8 years ago, and i got it under control on carbimazole and after a couple of years I was of medication and signed off..... this time is definitely worse than last time.
Sorry I missed this post, as I'm usually on the Thyroid uk website - you are not OK :
Being " in the range " doesn't mean you're ok and normal means diddly squat - it's not normal to have RAI treatment, and you feel rubbish.
OK - you need to ask for an increase in your Levothyroxine :
What dose are you currently taking ?
Generally increases are at 25 mcg and a further blood test and increase will probably be necessary in another 6-8 weeks time.
Your TSH needs come down and both your T3 and T4 go up the ranges.
This will happen as you slowly increase your dose of T4 - Levothyroxine.
Most of us feel better when our TSH is down below around 1 and our T3 and T4 up in the top quadrant of the ranges.
Currently your T3 is at 38% through its ranges and your T4 22% through its range :
As previously mentioned to you, no thyroid hormone works well if vitamins and minerals are not optimal, and RAI can trash these essential nutrients, so would suggest you get your ferritin, folate, B12 and vitamin D measured and these need to be optimal in their ranges.
They may very well be in range and you may need to supplement these yourself, so lets see the numbers and ranges and you will receive considered opinion on any that look like they need building up.
Hi, thank you for getting back to me , am currently not taking anything. My endo consultant said after my blood test to give it six weeks and have another blood test because it looks like it’s heading towards going under active, so I have to have a blood test in October.
I dread to think how you will feel in 6 weeks ... I would change your Endocrinologist because this one will keep you sick. You are already hypothyroid with a TSH that high. In comparison mine is 0.38 and I feel great ... I am in remission from Graves' at the moment btw.
She is making you wait so long because she is going by your TSH which is a pituitary gland hormone not a thyroid gland hormone. She should be looking at your T4 and T3 which should be in the upper third of the range. The TSH always lags behind and takes a while to rise. She needs to start you on 50mcg of Levothyroxine and then a retest and an increase of 25mcg until your TSH is 1 or lower
You need an increase in Levothyroxine as detailed now, rather than in 6 weeks time.
You need a TSH to go under 1 and a T3 and T4 up at over 75% through their ranges and this will happen with 1 but more probably 2 or 3 increases in Levothyroxine over the period of the next few months.
Generally increases in T4 are at only 25 mcg at any one time and then another blood test and review of the results in 6-8 weeks time, and thereon in another increase of 25 mcg and a further blood test at 6-8 weeks until your symptoms reduce and your T3 and T4 are much higher in the ranges which will cause your TSH to go down the range, but this is ok.
Your ferritin, folate, B12 and vitamin D all need to be higher in their ranges and your core strength strong and solid to support you through this period. No thyroid hormone works well if these essential vitamins and minerals are not maintained at optimal levels.
I think after RAI I was immediately started on 100 mcg daily of Levothyroxine which is T4 - I have just looked back and see you aren't even on any medication T4 - Levothyroxine thyroid hormone replacement - can you get to see your doctor faster than this endo - and discuss and action an immediate prescription ?
It’s so hard to get in to see my doctors , but after seeing what you have wrote it makes sense and I will take this with me .... after I had my RAi they kept me on 40mg of carbimazole for another 6 weeks and I had gone under active, so they took me off and let it come back up naturally it went from 4.57 then 3 months later because of COVID it was later 2.74 , and they were happy with that even though I was telling them how bad I was ..and my last blood was on 30th July and was 3.55(these are all my TSH levels)
Well, to be kept on Carbimazole after RAI sounds like an error on someone's part somewhere : so, anyway, we are where we are today and you need T4 - Levothyroxine - you are now hypothyroid and the longer you leave medication the more disabling your symptoms will become.
They said I was fine,they give me some drops to help with them watering a lot. I was pleased about it being ok, because I was convinced something was wrong
Once you start treatment with Levothyroxine and your levels come up and your TSH goes down I think your eyes might improve. You may need to see an optician regularly because sometimes you can get TED with Graves' Just because you have RAI doesn't mean you might not get it in the future I'm afraid. If you join Elaine's site she is much more knowledgeable than me and will be able to advise you more. She helped diagnose me over 10 years ago when my GP told me I was going through the menopause. You can read my story on my profile page if you are interested.
I always tell my optician that I have Graves’ (it’s on my records anyway) and ask them to check for any changes that might indicate TED. So far (fingers crossed), my eyes have been fine, but my eyes are typically badly-affected by tree pollen, so I have to remember to begin taking the first antihistamines of the year before beginning to panic.
You need to see an ophthalmologist not an optician! Opticians checks your eyesight and gives you glasses/contactlenses. They aren’t medical doctors so cannot help you if you have eye complaints. I immediately got a referral from my endocrinologist when I got sore eyes.
Really... when I mentioned it at the opticians about the Graves, they said I would have been sent to them anyways because they have more things to test with than they do at the hospital .... I don’t see my endocrinologist till the beginning of December so I will mention it again, thank you for the information
What? No that's not true at all! Did they test if your eyes protrude? You need to see an opthalmologist, not an optician! An optician can't prescribe you steroids if you needed them. That optcian is telling you BS
Thank you for letting me know, I will definitely be mentioning this. I did mention it to the consultant the last time I spoke on the phone and she even mentioned it in a letter that was sent to me and my doctors but then nothing was done about it , so I’d thought I had read that an optician could see me for it
apparently some endos do like patients to stay on carbimazole for a while after RAI (antibody/thyroid levels can rise immediately afterwards), some don't...but 40mg is a fairly hefty dose.
There are quite a few articles. Here are a couple ... I have read one that was even more interesting, but can’t find it now, it’s probably behind a pay barrier I can no longer get through.
I think you need Levothyroxine because your TSH should be 1 or lower. Have you seen Elaine Moore's site? She had RAI and there is a lot of useful information on there.
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