I still feel crappy even though my bloods say am ok

[Mhymer]

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 ...

[AgVocate]

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.

[LiliAmsterdam in reply to AgVocate]

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.

[Mhymer in reply to LiliAmsterdam]

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

[LiliAmsterdam in reply to Mhymer]

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?

[Mhymer in reply to LiliAmsterdam]

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.

[pennyannie]

Hello Mhymer

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.

[Mhymer in reply to pennyannie]

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.

[pennyannie in reply to Mhymer]

Hey there

You are already underactive and hypothyroid ;

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 ?

[Mhymer in reply to pennyannie]

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)

[pennyannie in reply to Mhymer]

Hey there

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.

What happened at the opticians ?

[Mhymer in reply to pennyannie]

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

[pennyannie in reply to Mhymer]

Just make sure that the eye drops, lotion or potion is preservative free -

There are many brands and you may find you need to swop around products :

I think you need to tell the hospital that you now have issues with your eyes, they should have more knowledge, re RAI and thyroid eye disease.

[Valarian in reply to Mhymer]

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.

[LiliAmsterdam in reply to Valarian]

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.

[Mhymer in reply to LiliAmsterdam]

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

[LiliAmsterdam in reply to Mhymer]

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

[Mhymer in reply to LiliAmsterdam]

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

[LiliAmsterdam in reply to Mhymer]

yeah I had to repeat myself several times to get a reverral to an opthalmologist! Luckily my eyes are fine. I hope yours are too!

[Valarian in reply to pennyannie]

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.

[pennyannie in reply to Valarian]

Oh, thank you - I've never heard of this - appreciate the information ;

[Valarian in reply to pennyannie]

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.

ncbi.nlm.nih.gov/pmc/articl...

eje.bioscientifica.com/view...

hindawi.com/journals/crie/2...

mythyroid.com/iodinehyper.html

[pennyannie in reply to Valarian]

Thank you for the links :

[Valarian in reply to Mhymer]

Are “they” GPs or endos specialising in thyroid problems ?

[pennyannie]

Hey there again -

Just to say I need my ferritin up at around 100 for my optimal conversion of T4 :

If this is serum B 12 I think it should up and over 550 :

I think if it's active B12 it needs to be well over 70 :

My folate is up at around 20 :

And if you have a vitamin D that needs to up at around 100 :

Please check SeassideSusie and Slowdragon replies re vitamins and minerals just to double check my understanding.

[Mhymer]

Or my goodness really, I wonder why she is making me wait for so long,

[Mhymer]

Hi, I had a quick look and I’ve ordered her book , I seen some people talking about it.