Thyroid UK
84,398 members99,394 posts

STUPID ME

Got my blood results back today tsh -2,18 (1-5 ) ft4 -15(9-24) doctor leaves a message with the troll that answers the phone ' all normal' I ask what he said about the amount of levo I should take now i am normal ' ' he never left instructions ' she says 't3 what is the level for that ' I asked ' it wasn't tested she said .. why why why I think so doctor calls me this is what i am told ' stay on 100 mg and another blood test in 6 months ' So i have always been on 100mgs i have not been told to lower the dose so in my mind that means its going to suppress my tsh more and make my t4 higher I dont no what to think ???? . Because one does not fit all I learnt when i was over active that a suppressed tsh caused me great burning pain in my neck and muscles, so i want to avoid my TSH going below 1. This is my 7th week on levo , I feel crappy with weird feeling , can some one advise me please , cuz it looks like the doctors think i am better and why the hell did they not test my t3 , I have just about had enough

16 Replies
oldestnewest

I am 6 months post RAI also my thyroid is depleted

Reply

It's very rare to get the FT3 tested on the NHS, from what I've heard. They believe that the TSH tells them all they need to know!

TSH, itself, doesn't make you feel anything. It doesn't cause symptoms whether it's high or low. It's the T3 that causes symptoms when it's too high or too low. But, try and tell a doctor that!

If you've been on 100 mcg levo for some time, it's doubtful if it's going to continue make your FT4 rise or your TSH lower. But you could very well be under-medicated, if your FT4 is only 15 - that isn't even mid-range. Most people on T4 only need their FT4 up the top of the range. But, of course, you won't know how well you're converting that T4 to T3 unless you get both tested at the same time, but try and tell a doctor that. They are so ignorant!

1 like
Reply

This is the first time they have not tested my t3 last time it was 3 looks like they are not going to test it again, So greygoose i take it they think all is fine ? Thank you for explaining things to me as i have no thyroid and really dont understand what they tell me . Two weeks ago the doctor told me to take 125mgs a day but i did not because i dont trust him , all my faith has gone out of the window but you said i am under medicated so i think i made the wrong choice , thank you for your help greygoose

Reply

In most ranges, a free T3 of 3 is under range (but can't be sure withitu exact lab ranges). That could make you feel shaky and anxious as the body often tries to compensate by producing a ton of adrenaline to keep you going.

1 like
Reply

If you have no thyroid gland at all, I don't know how you can survive on levothyroxine alone. The very least should be the addition of T3.

holtorfmed.com/no-thyroid-g...

Reply

If your in the UK then, like many on here, you can get full private testing

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take immediately after.

Reply

Wendypartridge,

FT3 is rarely tested on NHS unless TSH is suppressed <0.03. With TSH 2.18 and FT4 less than halfway through range your FT3 will not be high.

I personally think TSH 2.18 is too high and dose should be raised from 100mcg to either 125mcg or 100/125mcg alternate days to raise FT4 and lower TSH. Remaining on 100mcg doesn't mean FT4 will continue rising. Levothyroxine isn't like Carbimazole which requires titration.

It was never your suppressed TSH which made your neck and muscles burn it will have been the high FT4 and/or FT3 which caused the symptoms and suppressed your TSH.

2 likes
Reply

You need to forget about how your Graves was treated and how your levels were. You are now being treated for hypothyroidism. You need a low TSH and high FT3 and FT4.

Reply

Silver Fairy do you think i am under medicated?

Reply

If anything you need a slight increase as your free T4 is not in the top quarter of the range, so your free T3 is probably also too low. I'm not sure that TSH levels matter if you don't have a thyroid - they don't make you feel anything: it's the free T3 and free T4 levels that dictate how you feel. But I've never been hyper. Lowering the dose would increase your TSH and lower your frees, making you feel very hypo.

1 like
Reply

thank you, Angel of the north, for your advice , I feel muscle pains burning pain in my back and neck cramps the list is endless and the doctor has 'normal zoned me,' I could not believe they did not test my t3 ? my pain burning etc is fibromyalgia The umbrella term for 'go away' what do you do when you feel you dont trust your doctor? so you talk to another who is even less clued up . When you wake up every morning crying because you no there is no help , I know there are worse things to have but illness is illness and all we ask for is a little bit of understanding and normal life , xxx thank you

Reply

You could try the list of doctors with a clue from louise.roberts@thyroiduk.org.uk or just come out and ask one of the doctors in your practice for in increase in levo as there is plenty of room for your TSH to drop without it being suppressed - a TSH of 1 would still be all normal (and the bottom of the range is usually about 0.4). Or you could take matters into your own hands and buy your own: either more levo, or T3 or NDT. Fibro isn't even a real "disease", it's just a collection of symptoms which could be caused by many things - even the name just means "sore muscles". It's not supposed to be used as a diagnosis until everything else has been tried. You could also ask Louise (email above) for a copy of the Pulse article by Dr Toft that explains that many patients need top of range FT4 and some need over range FT4 and suppressed TSH to feel well. If you'd had thyroid cancer and had no thyroid becaue f that, they'd be quite happy for you to have very low TSH, so why not when you have no thyroid for another reason?

2 likes
Reply

Hi Wendy, please do not refer to yourself as stupid - I am post RAI some 13 years and yes, you would have thought a full blood test, viz TSH + T3 + T4 mandatory in these circumstances - no!

I've only found out recently that my last test for T3 was in 2003 before I was zapped ! the good news is that there are people on here who can help and advise on what to do next. I managed to get the full blood test out of my doctor, provided I pay for the T3 and T4 bits - well what do you know - I now have scientific proof that it is " not all n my head" - it would seem I have a conversion problem but seeing these results the doctor has arrived at the conclusion that a T3 at .9 through a range of 3.7 equals 50 % - rather than keep saying no it's only 25 % through its range I mentioned that since my T4 was at 20.5 some 85% through its range was there not some inconsistency in that both results should be in the top quadrants of there ranges -

" well, its ok ' - you're got 4 you've got some anyway " was the reply.

I also managed to get a referral to see an endo next month, so let us see what comes next !

You need to keep reading and educating yourself, this site is amazing, there is a lot to take in -

Best wishes

1 like
Reply

Thank you Pennyannie for your kind words and advice. I will try to educate myself, but at the moment I am trying to come to terms with this illness. I learning little by little off this site,I have to admit i truly regret having RAI , but i hope in time to learn and be able to understand it all xx

Reply

Well, what's done is done - from memory I was on 6 monthly check ups at the hospital, sadly seeing different interns each time - they were only concerned that my TSH be in range - the doctor I had then, kept weighing and measuring me, telling me off for weight increases - like I had any control over anything at this point ! Looking back he didn't know what he was meant to be doing and the hospital, on my 6 monthly check ups threatened me with more RAI if I didn't feel better than before. I remember one very nice intern, asked him if this was as good as it gets and he was honest and basically said yes. I then discharged myself from this upsetting and futile procedure and muddled along alone with another doctor adjusting my levothyroxine from TSH results - not good idea - -writing this out has helped me, and hopefully made you laugh, there is light at the end of the tunnel, but there are many tunnels to choose from.

Yes, I too regret getting this treatment - I thought I was killing it by drinking the rai, but now I have graves, hypothyroidism and thyroid eye disease - bit like

BOGOF with extras !!!!

You're still in the early days, post rai, sincerely hope things settle down and you can work through this minefield, it takes time to read, accept and fully understand implications and trust yourself .

1 like
Reply

You have had a hard road to walk too, thank you so much for your story it has helped me a great deal

Reply

You may also like...