Levothyroxine dose increase

Hello

I have now been to the doctor and asked regarding increasing my Levothyroxine dose. I went to the doc armed with the information that I got emailed from Louise Roberts on the ref range for results. My doctor totally disregarded everything I said and just went over again information that had previously been said to me by another doctor. She would not listen to me at all.

She agreed to increase my level but only to 150mcg alternate days, so now going to take 125 one day and 150 the next time about. Any idea if this will make a huge difference? Also she wants to leave me around 2 months before checking my blood results. Is this a reasonable time to leave or is there a blood test that I could purchase myself that would show results before the 2 months are up?

Last results were TSH 4.26 (0.55-4.78)

T4 18 (10-25) T3 4.9 (4-7).

My doctor just did not seem to acknowledge the fact that my TSH should be a lot lower before I may see some positive results.

Any help would be appreciated.

Thanks

Lynne

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15 Replies

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  • More importantly, your FT3 should be a lot higher. It's low T3 that causes symptoms, nothing to do with the TSH - which, of course, is far too high.

    What reasons did she give for not wanting to increase? Did she talk about arterial fibulation and osteoporosis? That's what they usually use to scare you off with. Just tell her that you take full responsibility for that. It's only a very, very slight risk and you'd rather live well in the present and let the future take care of itself.

    However, I'm sorry to say that her miserable increase is not going to make much difference, if any. You do not convert at all well. What you need is a reduction in dose and some T3 added to it. But, she doesn't sound like the kind of doctor that would do that! She doesn't know enough about thyroid. So, I think that, if you want to get well, you're going to have to take charge of your own health, and self-treat. How does that idea strike you?

  • Hello greygoose. Thanks for getting back to me.

    My doctor never gave me any reasons at all for not wanting to increase, she just stated to me that these are the ref ranges that our practice uses and stated that I was within the normal range and that it was fine. Then I queried with her whether I should be at a lower level, with me having the information from Louise Roberts with me and she totally dismissed that and just said, well we could increase you alternate days. She has also changed my record on computer to the amounts that would only do me 2 months alternate. if she had left at the usual 2 months supply of each tablet I could have increased the dose slightly myself but unable to do that with only the correct amount of medication now for alternate days.

    I would be keen to self-treat if I totally understood all aspects of the thyroid. I am starting to understand more but not totally with all the different levels etc that have to be checked etc.

  • Well, to start with, it would be a good idea to get your :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    tested privately, to give you a base-line. Post the results on here, with the ranges, and people will advise what you should be doing next.

    If you want to know where to buy levo/T3/NDT on-line, post a new question, asking just that. People will PM you with their trusted sources.

    If you have any questions about dosing, testing, or anything else, just ask on here. There will always be someone to reply to you. You are most definitely not alone!

    I think self-treating is the best solution, because your doctor appears to be very ignorant, and - as shaws says - will only keep you ill, because she doesn't know any better, and doesn't seem to want to learn. You'll be better off alone, than under her 'care'! :)

  • Thanks greygoose. Have to think seriously about doing this. 😀

  • Modern doctors and endocrinologists seem to be the last people on earth who are unable to treat people with hypothyroidism. This is from Thyroiduk.org.uk

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

    Like any of us on this forum, the only way we get better is by Do It Ourselves

    web.archive.org/web/2010112...

    email louise.roberts@thyroid.co.uk and ask for a copy of the Pulse article by Dr Toft (ex President of the BTA) excerpt:

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    While taking both hormones it is important serum TSH is normal and not suppressed. If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed.

    (P.s. re the last paragraph Lynn Mynott of TUK responded in no uncertain terms about it)

  • Hello shaws.

    Number 6 in that article is the information I tried to get my doctor to read and then change my medication accordingly but she just took the article and scribbled on the ref ranges that my doctors practice use and says that is what we follow and disregarded the rest of the information.

    Wonder if I should just wait till 6-8 weeks and then get my bloods checked again and then try and push for a greater increase. It is just another 2 month or so delay of trying to be put on the correct medication.

    Thanks for your reply!!!

  • Maybe she doesn't realise that Dr Toft, who wrote that article was the President of the British Thyroid Association. If she is keeping you ill you might have to go the self-treatment path but still get your blood tests done at the surgery. I think that greygoose would agree.

    You wouldn't believe doctors are so ignorant as to not understand that we need a TSH of 1 or lower. The ranges are only a guide and when we go over the top of the range (not 10 as the BTA suggests) we are diagnosed as being hypo. The TSH of healthy people will be 1 or lower when on thyroid hormone replacement.

    Your doctor isn't the only one who believes that anywhere in the range means we are on sufficient hormones. They are so wrong.

  • Thanks shaws for your help 😀

  • Your Dr is raising you meds slowly and that's the right way to do it . It comes out to about 137 mcg . Repeat labs in six weeks .

  • She has been on levo for 5 years. I think that is a bit too slow.

    Jo xx

  • You still don't over do thyroid meds . Slowly but surly is a much better to go .

  • Thanks Jo. It is definitely too slow for me. x

  • Hello jgellis. I have been trying to get my medication increased for a long long time without any success. I do not have enough hair on my head for this to go any slower I'm afraid. Each time I brush/wash/dry my hair a handful falls out. My husband gets a shock each time I do my hair as to how much really falls out. I really need a doctor to take charge with the correct information and help me now......

  • Lynnie , my sympathy and blessing go your way . I just suggested low increment raises because you don't want to over do thyroid meds either . Thyroid meds are very powerful and there is a chance of over medicating . Further more it does take some time for the T4 to build in our system . Are you under Dr care now ? You might want to call him/her and go over your symptoms .

    Be Well Hugs ....

  • Without a thyroid gland, I tried increasing the levo to 225 per day and reducing to 50 per day over the years. I have no idea what the TSH results were and I didn't care. Whichever dose I took I felt better for a week or two, then had to increase/decrease to 150 at which point better than on any other dose. Finally gave up and now take NDT for last 3 years.

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