No thyroid medication frustrations

Hi everyone, I'm new on here and am after some tips please

I had my thyroid removed in August 2016 after the removal of one half discovered cancer in a nodule. I'm now in the frustrating process of trying to get my medication right.

Started on 100mcgs of levothyroxine = felt awful, bloods confirmed too low.

Went up to 125mcgs = felt better but still bad, bloods confirmed ok.

Went up to 150mcgs = felt great, bloods confirmed too high.

I'm now alternating between 125 and 150 to try and get a balance but don't feel good again (tired, hair loss, dry skin, headaches, bloated face).

I've never had any other tests than the thyroid function test and am booked in with my GP in a few weeks to ask for more tests (she previously suggested T3), but I was wondering whether there's others out there with similar issues who might be able to suggest some extra tests while they are taking blood!

Thanks in advance

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12 Replies

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  • Do you always get the same make of levothyroxine? Many people find that the makes are not interchangeable - they might feel one make is slightly more potent than another, or may be intolerant of some excipient.

    Do you make sure you leave a good gap between taking your levothyoxine and having blood drawn for the test? For example, I usually take my levothyroxine at bed-time but on days when I have a blood draw, I skip taking it until after the blood has been drawn.

    You could choose all sorts of regimes between 125 and 150 to try to get the best dose for you.

    The only useful thyroid hormone tests are Free T4 and Free T3. (TSH will almost always be tested but technically isn't a thyroid hormone.)

    Do you make sure you take your levothyroxine welll away from food, drinks (other than water), supplements and other medicines?

    Are you taking any other medicines or supplements?

  • Hi, thanks for your reply.

    I take no other medication or supplements, take tablets as soon as I wake up and don't eat normally for about 1.5hrs after taking them (including coffee) and have always had the same brand.

    !!!

  • Maybe worth a read of this poll:

    healthunlocked.com/thyroidu...

  • ask GP to check levels of vitamin d, b12, folate and ferritin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. When you get results suggest you make a new post on here and members can offer advice on results

    Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) When taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    thyroxine must be taken on an empty stomach and then nothing apart from water for at least an hour after. (No coffee or tea) Many take on waking, but can be more convenient and recent research, suggests perhaps is more effective taken at bedtime. (Must be at least two hours after eating)

    Some other medications or supplements must be taken at least 4 hours away.

  • When you say you were over medicated when you felt really good. Do you know what your results were at the time with ranges? I'd certainly ask for your vitamin levels to be checked also folate, iron, b12, D.

  • Thanks for your responses everyone.

    Haven't ever had the results broken down so will call gp tomorrow for them and post back here

  • Welcome to our forum and am sorry you feel unwell. The aim of thyroid hormone replacement is to feel well but most on this forum have the same question 'I'm taking thyroid hormones but still feel unwell' - doctors usually say you are 'fine' 'normal' 'ok' when we feel anything but normal.

    Doctors have a very bad habit of reducing our hormones due only to the TSH result.

    Our TSH should be 1 or lower but most doctors are so badly trained they don't know this fact and are 'happy' when patients' TSH is somewhere in the range.

    We have to read and learn if we've to get to good health. The NHS normally do TSH and T4 and if TSH is anywhere in range doctors believe we're on sufficient and don't increase. Neither do they know any of the clinical symptoms.

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

    Ask your doctor for a Full Thyroid Function Test which is TSH, T4, T3, T4, free T4 and Free T3. All of them may not be done by the lab if TSH is in range, or GP not request them. You can have a test for those not done and we have recommended labs. It is important to know exactly what your results are before increasing hormones.

    A Full Thyroid Function test is TSH, T4, T3, Free T4, and Free T3. B12, Vit D, iron, ferritin and folate, The Blood test should be the very earliest possible as TSH is highest then and seems to be the only result doctors take notice of and adjust meds according to the TSH whilst not asking patient how they 'feel'. Any remaining symptoms we have are not thought to be connected when they most probably are.

    New research has also shown that many feel much better on a combination of T3/T4.

    Blood tests have to be the very earliest possible, fasting although we can drink water. Also allow 24 hours between your last dose of levo and the test and take afterwards. This keeps the TSH at its highest as it drops throughout the day.

    Always get a print-of the results with the ranges. We are entitled by law to have them and some surgeries charge a nominal sum for paper/ink.

    I am not medically qualified but had undiagnosed hypothyroidism but am fine now thanks to Thyroiduk.org.uk but now we have the forum too.

  • I have just joined this forum as I am feeling the same. Taking 100mcg levothyroxine though my eyes are so puffy and I'm so tired all of the time, just had my TSH repeated to be told it's normal

    Gonna ring the doctors tomorrow and ask for a full range of bloods to be taken - as feeling like this is definable NOT normal that's for sure!

  • Hi again everybody,

    Right, I've called the GP and asked for my TSH and T4 readings:

    7th Oct (taking 100mcgs)

    TSH = 5.38

    T4 = 14.3

    12th Dec (taking 125mcgs)

    TSH = 0.5

    T4 - 17.7

    1st Feb (taking 150mcgs)

    TSH = 0.1

    T4 = 16.2

    NOW...HELP!!!!!

    What the hell does all that mean??

    thanks in advance everyone

  • Hi Olivia80,

    Quite interested in your post as I also had my thyroid removed 6 months ago. I'm still struggling to get my meds right. I started on 150 mcg Levothyroxine straight after surgery, then 125mcg, then alternating days. I have tried different options and I'm now considering going up to 175mcg. Your T4 is beautifully within range (higher part) when you are on 150mcg. Mine is nowhere near which means I need more meds. Seeing the doc next week. You really need to learn how to read the ranges of TSH, T4 and T3. I've been plotting mine on a graph so it's easier to compare. Good luck.

  • 150 mcg seems like it's keeping your TSH at about the right place. Is your thyroid supposed to be suppressed? If so it looks like it is about where you would expect. It might be worth checking out all the B vitamins like people have suggested. I don't know what anaesthetic was used for your surgery but I read that nitrous oxide knocks out B12. I've found Vitamin C can be taken with thyroid meds and seems to help. Not sure if it's recommended but it works for me.

  • unfortunately many people who have had thyroid removed or had RAI find they simply do not get well on levothyroxine

    They tend to do very much better on Natural Dessicated Thyroid / Armour or Nature thyroid which your GP can prescribe on the NHS on a named patient basis

    i trust that

    ferritin

    folate

    b12

    vit d3

    have all been tested and are at least halfway in their ranges because unless they are halfway your body has little prayer of being able to utilise the levo and converting it into the t3 that every cell needs to function

    Hypothyroid trashes a huge range of vitamins and minerals in the body especially vitamin B and Vit C

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