Lowered dose and feel worse

After my recent consultant appointment, it was suggested that I reduce my T4 from 150 mcg to alternate 100/150 mcg per day.

I am fully suppressed on 150 due to follicular cancer - but am still very tired, so consultant feels I am over medicated, and by slightly reducing meds, I should feel less tired. He explained that I'm going passed my peak and dropping off the other side.

However, these last 2-3 weeks I am feeling spaced out and not with it at all. My head feels all over the place. I'm extra tired in fact. I'm going to bed early every night. What can I do to improve things?

15 Replies

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  • Do you have latest blood tests with reference ranges? Dropping by 50 every other day, is quite a big drop. You would probably be better doing 150/125. Any chance you could ask your endo to let you try this, (although without the blood tests, it is hard to be sure). Do hope you get help over this. PS. Are your iron levels good?That is another reason for tiredness. x

  • Yep, I agree with Hennerton. Easiest thing would be to cut 50mcg in half and take 150/125mcg every other day which is equivalent to 137.5mcg & drop to 125mcg daily after a couple of weeks and see how that feels.

  • You could try a dose increase... If you felt bad, then reduced the meds and felt worse, it does rather suggest you aren't on enough to start with.

    A full replacement dose of t4 only is probably going to be nearer 200 mcg that the silly amount the endo s messing around with! If you feel better at a higher dose, write to the endo and tell him

    ,. Xx

  • I think Galathea's comment is quite true.

    When doses are 'adjusted' due only to the result of the TSH you don't feel well. The purpose of thyroid gland hormone replacement is to make us feel well but we have to have enough of it to do so. Also, for some, levothyroxine is not the best for them but it is difficult to have the option to try an alternative, or even the addition of T3 to T4.

    This is an excerpt from Dr Lowe:-

    Question dated July 15, 2006

    Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you.

    web.archive.org/web/2010103...

    Read also the question dated July 12, 2002

    This is also from Dr Lowe but some links within this archived site don't work but his info is very good.

    Go to the date October 20, 2004

    web.archive.org/web/2010103...

    We have to read and learn as much as we can in order to get well. It can take some time but it's good when you finally get there.

  • Hi Sorry to hear you are having a rough time Was your thyroid meds reduced after the blood test for TSH, T4 and Free T3, it should have not been reduced without these tests. Possible if so that the problem is the FT3 and you need some of that too. Everything effects the thyroid, but docs are very good if more than one thing wrong to blame that thing, easier for them!

    If it was me, I would try and bear it for 2 weeks and then have a proper blood test,ie all 3. Then take what ever the bloods show you need probably no more T4 but someT3. It all depends on the results.I assume this was a surgeon? If so, have you seen your Endo? they are physicians and this is more their field than a surgeon.If not I would suggest you e mail your Endo via her sec, do not send a message as often misinterpreted. If possible send her the blood results too.

    I hope this helps.

    Jackie

  • Oh Jackie, I wish this was true. My ent surgeon always told me I could alter it myself as much as I felt like it to make me feel ok. as long as I stayed between 200/300mcg a day, it's the endo who altered mine. As far as I know most post thyroid cancer patients have their T4, FT3 and TSH taken routinely the reason being we have to have a suppressed TSH to stop any thyroid regrowth.

  • Hi You need to be under an Endocrinologist,who is not a surgeon now addressed as Dr.. not Mr.. or both. It is because he is a surgeon, not a physician.It is completely different.

    Jackie

  • Sorry, I wasn't clear. It's 20 years since I had the cancer/thyroid removed. I was under the surgeon and oncology for many years, but I've only been under an endocrinologist for the last four years and have an oncology nurse telephone consultation once a year for the last two years. I personally preferred things when I was under the ENT surgeon. :(

  • Hi That is ridiculous.I would find a really good Endo, make sure they have various prescribing methods, ie T4, T3 and armour etc, then ask for a new referral. Quite honestly I think this is terrible, you should not be left floundering like this. Yes you are well over the cancer but it is how you are now that matters.

    If you are not having the proper tests every time alteration in meds, then can you have them on line, blue horizon, main site, well known Lab to docs, quote TUK 10 for a discount, finer prick ( it is a phial of blood, half a teasponful) orr venous. Do not use venous unless some one will draw it for free, not through a private hospital, expensive.

    Also are you sue you have had recent tests for the other related issues. Diabetes, vit d ( Hormonal) if treatment script after a blood test for corrected calcium ( 2), iron/ feriritn , B12 + foliates, needs to be high in range. These are associated with thyroid disease. Should be done annually , more often if on treatment for them.

    Best wishes,

    Jackie

  • Thanks, I moved a couple of months ago so I have an appointment with a new endo so we'll see what this brings. :)

  • An Endo should test all the things needed and the associated things, if any good!

    Jackie

  • My heart goes out to you. I had follicular cancer and I'm on 150mcg down from 300mcg a couple of years ago and my tiredness is worse on the lower dose. I definitely feel hypo not hyper.

  • I feel for you, it is not a nice place to be. Again I expect your Doctor is going by your TSH?

    One thing that doctors do not seem to realise is that we need MORE thyroid medication in the winter months.

    If only all doctors went by how you feel and not just by blood test results.

    I am over medicated as my TSH is always suppressed (because of the small amount of T3 in naturethroid) and my Free T4 is always above the lab range.

    I cannot function if I lower my dose and my Endo does not insist that I lower my dose because it took me 5 years to get there! so my GP leaves me alone because Endo says.

    Is your Free T4 at the top of the lab range? if not, it needs to be.

    Sue

    thyroiduk.org

  • I think you have said it all mine is the same as yours.

  • and you feel well howlyn?

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