Got 25 mg levothyroxine from GP after a struggle

Latest results are following left thyroid lobectomy 4 months ago TSH 1.68 (0.35-4.5), Free T4 14 (10-25), Free T3 4.9 (3.0-7.0), although in range I argued they were not optimal, I have loads of symptoms all getting worse, mainly sleep issues, fatigue, digestion, aches, eye sight, mental (brain fog/concentration/reclusive/moody, unable to lose weight etc etc. I stressed I wanted symptoms treated as apparently on paper my results are all good, the only one that was slightly low was calcium 2.17 ( 2.20 -?) GP did not provide any treatment for that. Is 25mg going to enough to make a difference? When is the best time to take? What should I avoid food wise? Any other advice for me please and thank you for advice to date I quoted it all and more from this site in my argument to get treated, so big thanks. x

13 Replies

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  • its going to take more than 25mcg to improve your symptoms but it a start

    trust your Ferritin is over 70 because without that you cant utilise the levo

    try not to worry about food issues though

  • thanks for the reply, my ferritin is 76.7 is that sufficient? And love my food although naturally I have went of some foods/drinks e.g. no longer want caffeine don't know what that is about and sometimes I can't stand my lovely glass of wine.

  • Your ferritin is fine so its not a conversion problem

    You simply need a higher dose especially after removal of part of your thyroid

  • After listening yesterday to a video of a Presentation by an eminent UK Endocrinologist, who keeps getting international Awards I thought, my God, things are going from bad to abominable. He stated that TSH is the only definition of hypo and if we have a level of TSH 2 or below, all our other symptoms are a Somatization Disorder even though the patient feels pain etc.

    vimeopro.com/thyroidvideos/...

    It is a very small dose but I think your GP is being very cautious and it may not relieve your symptoms by raising your metabolism sufficiently. This is a link and you have clinical symptoms:-

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

    Take levo first thing and breakfast about an hour later. Supplements and other medications 4 hours later. Some take levo at bedtime, in that case you the last thing you ate would be two hours previously.

    When having your blood test, do NOT take medication until after the blood test (if night time dosing miss this) and have it as early as possible. If GP hasn't already tested B12, Vit D, iron, ferritin and folate ask for these to be done. Get a print-out of your blood test from surgery and post on a new question, they must have the ranges too. Make sure your vitamins are good and the last 3 in particular help conversion of levo.

    thyroiduk.org.uk/tuk/treatm...

  • Thank you for all the good information, my next step if it does not help is to request a referral to an endocrinologist I have already spoken to one and they advised they would consider treating me on symptoms only, I actually think this is what swung the doc to giving me the 25mg but would have preferred the referral which I need before I can see the endocrinologist but I will keep at it. I have had all tests but the vit D for some reason my practice does not do this routinely, all in range although not very high, thanks again.

  • He/she would be a gem if considers treating on symptoms.

  • Hi Jane, although 'in range', your FT4 and 3 are way too low. Neither of them are above mid-range (17.5 and 5 respectively) but your T4 is higher in its range than the T3 in its range, which would suggest you aren't converting very well.

    Personally I would say you need an increase in your levo and the addition of a little T3. Treating individual symptoms seperately is not the answer. You need a decent level of thyroid hormones in your blood.

    Hugs, Grey

  • I will keep at the docs to increase but not looking hopeful for adding T3. I asked and was told they don't do both, seemed a strange thing to say? But will use the uncertainty around converting as my argument, what do I ask to get tested for this? I am interested in your advice around my T4 and T3 how do you work out what is higher in range I thought from initial results my T4 was lower, I would appreciate your rationale so I can relay this to docs, thank you.

  • Hm, yes, doing the maths and not just guessing, you're right. Anyway, to calculate for your T4 range the formula is thus :

    25 - 10 =15 divided by 2 = 7.5 + 10 = 17.5 mid-range. Your T4 is 14. And for T3

    7 - 3 = 5 divided by 2 = 2.5 + 3 = 5.5 mid-range. Your T3 is 4.9. So, yes, your T4 is a bit lower in its range than your T3 in its. So you can't logically use that argument then. Shame!

    Even so, both of them are much too low - most people need them to be up the top of the range to feel better. And your TSH is too high. Most people need it Under one.

    What you need to tell if your converting or not is just the FT4 and FT3 tests. The FT3 should be higher in its range than the FT4 in its - perhaps a little bit higher than yours. But as you don't have enough T4, it's difficult to say with any certainty.

    They don't do both??? What does that even mean? If it means they can give you either T4 or T3 but not both, say 'I'll take the T3, then please!' lol

    So, do keep on for the increase. If they say 'your TSH is in range', tell them you need it lower in range. I don't know. I've never really worked out what to say to them. I just keep saying NO, no way, when my doctor wants to lower my dose but I haven't asked him for an increase, I just top it up myself from my personnel supply. My TSH is suppressed, by the way, but that in no way means I am free of symptoms!

    Hope you get your increase.

    Hugs, Grey

  • Jane, ask about the low calcium. Your parathyroids may have been damaged during your lobectomy and should be kept an eye on and if necessary calcium prescribed. Calcium and iron need to be taken 4 hours away from Levothyroxine as they bind to Levo and prevent absorption.

  • thank you I will be vigilante about my calcium levels I requested the test because of toe and leg cramps and intermittent pins and needles so will keep an eye on it and request further tests.

  • Jane, supplementing magnesium (not oxide as it's hard to absorb) may help with the leg cramps. Pins and needles can be symptomatic of B12 deficiency. If yours is not >500 you should supplement with methylocobalamin sublingual lozenges, sprays or patches.

  • That could be magnesium deficiency but its equally possible your parathyroids have been damaged

    Both things cause cramping

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