Is this as good as it gets?

I write this as I am lay on my bed exhausted, having been able to do nothing all day.

My last lot of blood results were T.S.H. 6.00 (0.35-4.00)miu/L free T4 16.0 (9.00-26.00)pmol/L

Currently taking 150mcg Levothyroxine and told to keep it at that dose.

Am I right in thinking the dose should have been increased due to the TSH still being high?

Is this really going to be as good as it gets when hypothyroid, because it's a million miles away from the promise of getting back to normal after having had radio iodine in 2013 for thyrotoxicosis.

Should have known that was only suggested as a quick fix for their convenience, rather than for the good of my health. Lot to be said for hindsight..

Sorry for the ranty bit, but I'm so fed up of this and feeling so damned useless..

21 Replies

  • Good afternoon Chelle1

    You are not alone my results are poor as well I am exhausted but cannot sleep, makes no sense but seems it is not so unusual.

    A lady advised me i was very undermedicated and my results are similar to your results however I am new here but would imagine one of the clever well informed people will be along soon to advise you properly.

    Kind regards


  • Hi Maudo4 sorry you are not sleeping well. Don't know about you but I've just about had enough of feeling like this..thanks for taking the time to reply, and kind regards to you too..

  • chelle1

    "Am I right in thinking the dose should have been increased due to the TSH still being high?"

    I agree with you. There is plenty of room for dose increase. The aim is TSH 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their ranges, wherever suits you to feel well and alleviate symptoms. Your doctor is keeping you ill and he is not following guidelines. With that reference range you are probably looking at FT4 of 20+. Is this your GP or an Endo?

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

    "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)."

    If you email she will let you have a copy of the article which you can print out and show your GP or Endo.

    I would ask for


    Vit D



    to be tested. All these need to be optimal (not just in range) for thyroid hormone to work properly. If you get them tested (either GP or privately through Blue Horizon) and post the results with reference ranges, members can advise of any deficiencies and suggest supplements and doses to bring them up to optimal levels. Supplementing with Selenium will help conversion of T4 to T3 to that's useful to get anyway, along with Vit C as that supports adrenals, 2000mg daily will do the job.

  • The results letter and dosage instruction came from one of the nurse practitioners at the Endo clinic, not my Endo himself, who said he wanted to get my TSH down to around 1 or just below. Which is why I don't understand why he has not suggested an increase.

    My vitamin d level was 16, and they suggested I take 20,000iu twice weekly for 7 weeks, then go on a maintenance dose.

    I had a load of blood tests done through Blue Horizon, and was advised to show my g.p. everything that was flagged up, but to my absolute dismay, she turned to me and said that NHS and Private reference ranges are different, and so will not be taken into account. I wish I had known this before I paid out all that money..

  • Silly cow! lol Pardon my French. But, what a stupid excuse! The range goes with the machine the tests were done on, nothing to do with NHS or private! She is either very ignorant, or just being difficult. Time to start treating yourself, I think!

  • Thank you greygoose, you just made me laugh for the first time today..

  • Well, honestly, it reads like an endocrinological blond joke. Is she blond, by any chance?

  • I think she actually was at the time..

  • The reference ranges vary across the country according to the different machines that analyse the blood test, but as long as it is a certified lab ( and Blue Horizon is certified) they are valid. You could ask your GP about the variation in ranges across the NHS and if that means doctors in one area are unable to intepret blood results from another trust! May be not. Just to let you know my GP is happy to accept the results from blue horizon. Perhaps time to switch doctors.

  • Oh dear chelle1 I thought doctors were intelligent, don't they have to pass exams before and during med school?

    I would somehow get back in touch with the Endo, remind him that he said he wanted your TSH down to 1, and ask why you are being kept on a dose where your TSH is 6 and will he please increase your dose appropriately to bring your TSH down and alleviate the symptoms you still have.

    It doesn't matter what the range is, NHS or Blue Horizon, it's where in the range you are and that's easily worked out percentage wise so they can be compared. What she meant was that you had the nerve to show her some private blood tests you had done and it got up her nose! She could have just dismissed your results and said she would do her own. You didn't waste your money. I can't see a previous post where you posted your BH results, what are they? If you post them we can see if you are converting T4 to T3 well enough.

    As far as your Vit D level is concerned, mine was originally 15 and classed as severely deficient. I didn't do it through my doctor, that was a private test. After advice from here I started with a loading dose of 40,000iu daily for 2-3 weeks, then reduced to 5,000iu daily and within 2.5 months I had got my level up to 200. I reduced to 5,000iu alternate days and got my level down to 150 (recommended is 100-150). I've just re-tested and must have had some benefit from the bit of sun we've had during the summer and it's gone back up to 196, so for the time being I will be taking 5,000iu twice a week then during the winter I will be taking 2,000iu daily as a maintenance dose.

    By the way, you need to take K2-MK7 when taking D3. Vit D aids absorption of calcium from food, K2 directs it to bones and teeth rather than arteries and soft tissues. Magnesium is another cofactor which we need when taking Vit D.

  • Ok, these Blue Horizon test results are from 17th June 2015 and are as follows, flagged ones first..

    MHCH 346 (315-345)

    Platelet Count 139 (150-410)

    Uric Acid 370 (142-339)

    Triglycerides 2.59 (0.0-2.30)

    Low Density Lipoprotein 1.9 (2.5-4.5)

    Folate (serum) 3.4 (4.6-18.7)

    Ferritin 44.4 (13-150)

    Free T3 3.3 (3.1-6.8)

    Free T4 19.44 (12-26)

    TSH 0.726 (0.270-4.200)

    B12 375 (191-563)

    Thyroid Peroxidase Antibodies 654.0

  • Hi chelle1 We wont bother with the Thyroid tests from BH as we've discussed the more recent ones already.

    However, you have high TPO (thyroid peroxidase) antibodies which means they are positive for autoimmune thyroid disease aka Hashimoto's. If that wasn't mentioned to you it means that the antibodies will, from time to time, attack your thyroid until it is destroyed. Your symptoms will probably fluctuate, as will your results, during these attacks.

    There are a couple of ways you can help reduce these attacks. Firstly, adopt a strict gluten free diet. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. Some people also find they need to be dairy free. Also, low TSH and supplementing with selenium also helps reduce the attacks.

    Some reading about Hashi's

    Don't expect your doctor to know much about Hashi's.

    B12 - 375 (191-563) This is way too low. Anything under 500 and there's a risk of neurological problems. The Pernicious Anaemia Society recommends 1000. You can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg daily, which you dissolve under the tongue for absorption directly into the bloodstream thereby bypassing the digestive system. Once up to optimal level (close to 1000, but retesting does tend to give skewed results) you can drop down to 1000mcg daily as a maintenance dose.

    Folate (serum) 3.4 (4.6-18.7) Under range. This needs to be at least half way through the range. See below about B Complex.

    When taking B12 we should take a B complex to balance the B Vits. Be sure to get one with methylfolate rather than folic acid. Folic acid is synthetic and needs to be converted by your body to folate.

    Thorne Basic B or Jarrows B Right both contain 400mcg methylfolate which will bring your low folate level up nicely. Another brand that seems just as good is Doctors Best Fully Active B Complex - With Quatrefolic.

    Ferritin 44.4 (13-150) Again this is too low. For thyroid hormone to work ferritin needs to be at least 70, preferable half way through range. You need an iron supplement. Ferrous Fumerate or ferrous sulphate both contain about 65-70mg elemental iron and you'd need one twice daily. If you find that too harsh on your tummy or causes constipation then you could go for Iron Bisglycinate which is more gentle and supposed to be non-constipating, Solgar Gentle Iron is one such brand and contains 20-25mg elemental iron, although it is quite a bit more expensive.

    Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and other supplements as it will affect absorption.

    The others I don't know much about but you can check on this website for information

    When you get your results next week, you can always post them and we can see if there's anything different.

  • Thank you very much, I will take note of what you have suggested and set about getting some supplements.

  • Just a tip, when starting supplements, start one at a time. Start the first one, give it a week or so to see if there are any adverse reactions before adding the next one. Then give those two a week or so together to see if there's any reactions, if not add the third one, and so on. It's just so much easier than starting all at once - if you do that and have an adverse reaction you wont know what caused it, will have to stop them all and start again with them individually.

  • It will be if you continue to rely on that useless doctor! He obviously knows nothing about it. You are under-medicated, even by the TSH, so I dread to think what your Frees look like!

    You either have to change your doctor - this one is going to keep you sick - or take charge of your own health. And the first step towards taking charge of your own health is to get proper tests done, not just the TSH! You want :




    vit D

    vit B12



    That will give you a much clearer idea of why you still don't feel well. Details of private tests on the main page of TUK. When you get the results, post them on here, with the ranges, and let us help you understand them, and how it all works.

    In the meantime, you could try taking a few supplements - if you aren't already. Start with selenium - that will help with your conversion. A couple of weeks later - never start more than one supplement at a time - add in some magnesium. You don't need to test for that, most people are deficient because soils are depleted, and excess is excreted. Then after that, vit C. Start low - about 1000 mg - and build up slowly to bowel tolerance.

    I expect most of your nutrients are low, they usually are in hypos, and not only will that make you feel bad, but it will mean that your body cannot use the hormone you are giving it. But some need to be tested before you start supplementing. :)

  • I have just had a load of bloods done, should get the results next week, I will post once I have them. I want to help myself so much, it's just at the moment I can barely retain anything information wise.

  • Write it all down in a little book that you keep by you at all times, so you can just look in it to remind yourself.

    And, whilst waiting for the results, you can start on the regime I out-lined above. :)

  • sounds like a plan, thank you and yes I will start on the regime..

  • Good! :D

  • I would self Medicate. Maybe a little t3 would give you an energy boost also. So you may do well on NDT as it contains t4 and t3. b12 is very important as it helps produce red blood cells. I am on the low range of normal with this and just ordered a spray, as want to get it higher. My t3 is slighty over range but feel best like this. Doctors would freak out at that. They do my head in 😆

  • some doctors do my head in too..with you on that one..

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