I had RAI treatment in 2012 and have since been battling what seems like an endless list of problems, including most recently being diagnosed with Thyroid Eye Disease.
I have recently begun to feel very very unwell again - extreme tiredness, joint pains, feeling lightheaded, eye problems...the list is endless. Following advice on this board I decided therefore to begin taking my Levo (100 mcg) at night rather than in the morning with my standard cup of tea (which I now know is a big no no!). I expected that this would mean that more Levo was absorbed by the body and therefore perhaps a reduced dose could be prescribed however the complete opposite has occurred I think. As well as changing to evening Levo I have also been prescribed 200 mcg of Selenium to take for the Thyroid a Eye Disease so two major changes have taken place between the two results below. I do take the Levo and the Selenium at least 12 hours apart so I don't think there can be any interaction problems. Can anybody help me to understand these results?
Before switching to evening Levo and before Selenium - 06/01/14:
TSH - 0.37 (0.35-4.94)
T4 - 15.9 (9.0-19.1)
Since switching to evening Levo and starting Selenium - 24/03/14:
TSH - 1
T4 - 15
Because my TSH is "within range" the GP is unwilling to alter my medication even though all of my symptoms are screaming that something is very wrong. I feel like a complete write off and am struggling to continue with my normal daily life as a primary school teacher. He has referred me back to my endocrinologist however I may be waiting 3+ months for an appointment with her and that literally fills me with dread - I can't continue feeling this awful for so long.
Can anybody help me to understand my results so that I am armed with more information to fight for better treatment? Am absolutely desperate.
Thank you all in advance.
Emma x
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emma_marie
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hi there emma , firstly my lady was finally diagnosed with hyper about 20mths ago [ she has since gone to hypo ] ....and had a major other problem soon after diagnosis -- which was overcome --- it has taken this long ==== and we have an excellent endo & superb gp ==== she was also diagnosed with thyroid eye disease about 10 mths ago and was refered to moorfields hospital [ London ] under mr david v. who , in my opinion is brilliant , affable , knowledgeable and more important involves and explains ALL to the patient .... in short I cannot praise him enough .... he then refered her to dr nick p. at barts for ' low dose radiation ' treatment which was completed [ 12 sessions ] last Thursday ....the treatment was superb and could not be faulted in any way whatsoever .... we have today [weds] just got back from the follow up appointment with mr v and there has been a noticeable change already [ it can take 6-8 weeks for this to happen ..... I would advise you to try to get a referral for this for the T.E.D. .....they even admit that they don't know why it works , but it does in almost EVERY case , and more importantly there are NO side effects .......hope this may help you ....alan x
no this is JUST to treat 'and' arrest the thyroid eye disease .....and has been superb -- from transport [ if you qualify] through to the staff , actual treatment and information given at all times .....alan x
Even though they are in range, your TSH has gone up and T4 gone down, so that's not good. Selenium doesn't do that as far as I know. Do you have any spare levo that you could use to put it up a bit, to see if it helps?
I do have some 25 mcg tablets spare but not many. By taking in the evening I thought my TSH would go down rather than up ...was I wrong? It's made a huge difference but in the wrong direction
If I were you I would return to my GP and ask for a trial of a higher dose of T4, (say 125) If you have no working thyroid, your TSH should be lower and T4 at the top of the range. Dare I also say you probably would benefit from some T3 but I doubt if your GP will give it. That will be for your endo to prescribe. You may find, however that more T4 makes the difference for you. I do hope so. There is a book by Dr Toft, which you can buy. His words of wisdom are acceptable to GPs, so this may help your case. Helvella has the link for some pertinent parts of the book, (if he spots this post) or just Google it.
Thank you. I did return to the GP today but she is unwilling to up my Levo even to 125. She says that because the TSH is "within range" it is out of her remit to alter my dose. Waiting for endo to call me but the one that knows me has left and the new one is off until Monday. Hitting my head against a brick wall On top of everything else my eyes seem to be getting worse. Literally having a meltdown!
I know we are not meant to suggest this but if you have some spare 25 mcg tablets, why not just do a trial, as suggested by HarryE. It is a tiny amount extra and will do you no harm but could help you through the days until you see the endo. You may be feeling a bit better by then and can tell him what you have proved for yourself and ask for a new prescription. Hope you get help soon.
Also as often recommended on the forum, have you had B12, ferritin, folate, vit D checked? All have to be well in range for levo to work.
Yes I have had all of these checked and they were fine apart from the vit D which was massively deficient. This has now been rectified though and I take two vit D tablets a day. I rattle when I walk I have so many pills yet I still feel shocking
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Help with results please x
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