LEVOTHYROXINE QUESTION

In August of last year I had my medication increased to 100 mcg as my TSH levels had risen to 6.5. I had spent a number of years on 75 mcg. My TSH levels came down to 2.83. On my last blood test it has risen again to 3.31. I spoke to the GP about this questioning if my medication needed to be increased. She told me she was reluctant to do this, as I was on the borderline and that if she did increase I could go Hyper thyroid and that would be much worse, than the excessive tiredness and pin/needles in my hands. My question to the group, is having read a number of posts, most state that TSH levels should be 1 or below, is my GP correct in stating that my level is ok? Thank you.

26 Replies

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  • your gp is very very wrong

    your pins and needles will either be carpal tunnell or low b12

    either way your undermedicated

    get a copy of the Pulse article from louise.roberts@thyroiduk.org

    take that your GP

    and request tests for

    TSH

    free t4

    free t3

    ferritin

    folate

    b12

    vit d3

    arrange for the test to be early morning and fasting and on no account take levo in preceeding 24 hours

    then post your results inc ref ranges and we will know whats going on

  • Technically you are probably in range and we all know or have read that the ranges are too wide but your doctor is going on what she has been told or she thinks she could make you worse. Do we understand where she is coming from but she is neglecting what I think is the most important thing in medicine is listening to the patient!

    I agree with reallyfedup though would like to add that what is often thought of carpel tunnel can be the excess fluid of being hypo pressing in the nerves giving the carpel tunnel effect. Plus we are often low in minerals and vitamins so I think you will find you are deficient in some or all of those but again the medics don't realise being in range is not the answer and we often need to be high in that range to be optimal so again post any results and ranges. Also say you would wish to trial a small increase in medication as you are already feeling the effect of the TSH being on the rise and you don't want it to be as high as last time which was very debilitating. Remember that it takes 6 weeks to get the medication at its full strength so would need at least 2-3 months to see the full effect.

  • I hear optimal range a lot, what exactly does it mean? x

  • Optimal is the level that is right for the individual but is usually towards the top of the range. So it can/will vary between individuals.

    Most doctors are happy if you are in range but that might not be right for you.

  • thank you!

  • I think when doctors are trained in the function of the thyroid gland, which I think must be about a couple of hours, I doubt they see an overtly hypothyroid patient or hyperthyroid so that they can 'look and learn' on how best to treat 'each' patient as we nearly always present with a multitude of symptoms and they know not one.

    They have been directed that if we complain and doctor thinks 'hypo' a blood test will confirm. Unfortunately in the UK they've been told to wait until TSH is 10 (no matter how unwell patient is). Other countries prescribe when TSH is 3+. In UK I believe they are also instructed if TSH is somehwere in range (top around 5) that we're on sufficient hormones but that is very, very untrue.

    The most common symptoms is higher cholesterol, pains/aches, etc and there are about 300. Tick yours off:-

    thyroiduk.org.uk/tuk/about_...

    Once prescribed levothyroxine we have to have sufficient so that the TSH is 1 or lower. Usually before diagnosis we'll have a low pulse/temp and other strange symptoms. If we take too much of hormones we wont feel so good with fast heartbeat etc, so I would imagine we'd reduce dose ourselves. It is a gradual increase of 25mcg every six to eight weeks until well not until we are 'somewhere in the range).

    We have to read and learn to heal ourselves, which is possible, if what we are offered makes us feel well again but we have to have increases about every six weeks of 25mcg until we are symptom-free. Many do fine on levothyroxine but others need alternatives which the NHS wont offer. That's a long story so concentrate on reading posts and you will soon know more than most doctors.

    We are also usually deficient in the following, so ask for these to be tested:

    B12, Vit D, iron, ferritin and folate and thyroid antibodies.

  • My level is about 3 which is in the USA. I know numbers are different in UK. I agree with your doctor... :)

  • Out of interest what would be the range for TSH?

  • It doesn't matter what the range is, a TSH is a TSH, and the majority of people need it below one to feel well.

    When you are on thyroid hormone replacement, the TSH is irrelevant unless it goes high. If it is low, it doesn't automatically mean you are over-medicated - it is impossible to 'go hyper' if you are hypo - only an over-range FT3 means you are over-medicated, and they rarely test that.

    If your TSH is 3, then you are under-medicated, because 3 is hypo. How do you feel? Horrible, probably. If not, then you are just lucky. :)

  • I must be lucky...lol

  • Hi. Sorry to hear about your troubles, we all need to educate and provide guidance to our GP as the NHS guidelines are somewhat behind. MY GP responded Ok when I printed off info from Thyroid UK for him to read through, he upped my dose. I hope you achieve success. Keep your chin up.

  • Before thyroid testing came into being - Doctors listened to their patients and treated the symptoms. What is your B12 level ? If you are under 500 it could explain your fatigue and painful wrists.

    You are only HYPER when the FT3 is over range - do you know your level ?

    On medication most people feel better with a TSH of 1 or under ....

  • The reason that people on this forum suggest that a TSH of 1 is appropriate is that a Norwegian study of lots of healthy people with no thyroid issues showed a TSH for 95% of them being between 0.5 and 1.5, with an average of about 1.

    This makes sense to me.

  • Exactly the same happened to me and my GP switched me from 1x100mcg tablet to 2x50mcg tablets. I was, hmmm, not quite cynical, but I didn't think it would make any difference, but it did. It wasn't until I was in bed that night that I realised the itchy forehead and ears were no longer itching, and I had more sleep that night than the previous week put together. And this was on the first day! I've now reached the point almost all my symptoms have gone, and it's only been 10 days since the change over. I still have pain in my Achilles, but on a scale of 1 to 10, where a fortnight ago was 10, I'm down to 3 or 4. It may not work for everyone, but if an increase isn't forthcoming you could always ask to try. Still have the blood tests for vitamins etc, mine showed I was down on B12 and D3 (everything else ok, fortunately) and I'm due another test tomorrow morning. It's a pity I didn't have a test before the switch over and another after, it would be interesting to see the comparison, and if the difference I feel in my body matches the blood test results.

  • Achilles_Pain Is that taking 1x 50mcg tablet twice a day? So separated to take one in the morning and one in the evening, rather than 1x100mcg tablet once a day?

  • Crazy_CatLady no, I take them both together, first thing in the morning. I had a bit of a google and everything I could find suggested it makes no difference taking them at disparate times because of the way the hormone is processed and converted to T3 by the body.

    I did find out that taking them with a full glass of water, rather than drinking just enough water to take them, can make a difference as more water will wash them further down the intestine to an area they are digested better and the hormone absorbed more efficiently. No idea if that is true, but as of yesterday I'm taking them with more than just a mouthful of water to see if it makes a difference. And I also found out that you need to leave at least four hours between taking them and taking Vit D, so also as of yesterday I'm taking my Vits with my tea rather than with my breakfast. I'd previously seen on this forum about not taking Vit D at the same time as levo but don't recall seeing any time periods stated.

    I usually take what I find on google with a pinch of salt, but when it's something like that which is a simple change and unlikely to make any difference if it's just rubbish I don't see the harm in trying.

  • Hmm, interesting. So what is the rationale behind the 2x 50mcg working better than 1x100mcg tablet? Is there any known reason, or just one of those things? Is the brand of the two tablet strengths different?

  • I presume it's just one of those things. The 50s and 200s are the same brand, so it's not a reaction to different fillers, assuming they use the same ones in all their tablets?

  • All UK makes have the same excipients across all tablet doses.

    The ratios of excipients to active ingredient might well vary across the range.

    In many countries the tablets are coded by colour - so they are all different. Seems to be more or less a convention that 50 microgram tablets are made without colouring agents.

    (This was not always true. The 25 microgram branded as Teva used to be the Goldshield/MercuryPharma product and an entirely different formulation.),

  • ...in which case why was I ill every time I was dispensed the Wockhardt brand, if they are all the same? It took me a while (12 months?) of getting ill, getting better, getting ill, getting better etc to realize the cause, and once I did and refused that brand I stopped having regular relapses?

  • I did NOT say all makes are identical to each other. Just that within each make the listed excipients are the same across all doses.

    That is, the full ingredient list for, say, Mercury Pharma levothyroxine is identical for the 25, 50 and 100 microrgram tablets. But that list of excipients is significantly different to Teva, Wockhardt and Actavis.

    As I further explained, this is often NOT the case in other countries where they have coloured tablets.

  • Ahh, I misunderstood, when you said all manufacturers use the same excipients across all doses, I thought you meant all manufacturers used the same in all doses, sorry for the misunderstanding.

  • I agree that to some degree we have to adjust to what feels right for us and realise that it will take anything up to 3 months to show a difference. The doctor will always have to direct us in which direction we should be going as the symptoms are often similar whether over or under. I find I have to adjust by halving the 25 microgram tablets on only two days of the week. When you have little concentration it's so difficult sorting out your medication and those tablet boxes I find impossible and my tremor sends them flying across the room. I take approx 112 micrograms daily. This has reduced from 175 and I'm 62 now.

  • Hi there the DR is wrong as usual you should be between 0.5 and 2 that is what the endocrinologist advised as I kept saying at the time to my DR I needed my meds to go up. I'm currently 6 and need to increase as I changed over to NDT nature Throid. I would go back to your DR you have to keep on at them.

  • Your doc is wrong; you can't base your treatment solely on the TSH+T4 paradigm and expect to be well. But I do believe your TSH going above 3 is a bad sign, because the AACE range for TSH is 0.3-3.0. If you have not had a full panel (TSH/FT3/FT4/rT3/TPOAb/TGBAb) you should have one. For instance, you said nothing about Hashi's; if you have TPO or TGB antibodies, then you should be looking at dietary allergens and nutritional levels, to try to find what is causing those antibodies. The allopathic medicine approach of just giving Hashis patients T4, is inadequate.

    As far as being hyperthyroid ... I suspect almost all patients can recognize the hyperthyroid state when they encounter it. Going hyperthyroid is one way of finding your correct dose. Increase your T4 dose every ~6 weeks by an appropriate amount (e.g. 12mcg) until you feel hyper sneak in, then go off hormone for a couple days to let the hyper subside, and return to the previous dose.

  • Thank you for all your replies, very much appreciated x

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