Amount of Levo

I have no thyroid due to papillairy cancer, it was removed 14 year ago. I was then on 150mcg Levo for about 10 years, thought I was doing great, lots of energy etc. However there was a price to pay! Over the years (not knowing the high levo dose was causing havoc) I lost a lot of bone in my hips, had hip replacement, carpal tunnel, colitis, severe burning sensation over my chest, poor sleep sometimes due to horrendous pain in my body,so bad I was unsure if I would survive the night, anxiety, and the list goes on. I really felt Levo agreed with me and had no idea that some (or most) of these problems were the result of 150mcg levo. I think I convert T4 to T3 reasonable well. However newish research suggests I should not be on highish doeses of Levo so over the years I have had the dose whittled down and am now on 5 x 100 & 2 x 125. This is simply not enough for me. I am tired, a bit weepy and feel some of the time I am in a dream state. Endo wishes to reduce the dose to 100mcg a day now and I don't think that will work for me. my cholesterol is quite high 7.6 (but that is familial) and always rises as the Levo is reduced. I asked my GP the other day if I could have some T3 if my Levo continues to be reduced. He has referred me back to the Endo (6 months wait) for her to decide. Could anyone tell me, if I add little T3 (don't now how much) to a reduced amount of Levo will it be beneficial, in that is T3 less detremental to the body than T4. Latest results are Serum free T4 level 19.1 pmol/L Serum free triiodothyronine level 4.3 pml/L Serum TSH level 0.05 mU/L low TSH 0.05 mu/L with a high FT4 and FT3 is consistant with hyperthyroidism. Thanks so very much to everyone, without this site we would be 'up a gum tree'.

29 Replies

  • Pepekins,You haven't included ranges but I would say you are no where near being overmedicated, FT4 19.1 is not usually at the top of range and FT4 4.3 is usually less than half way through range and TSH 0.05 is low in range but not suppressed. Hyperthyroidism would mean TSH is suppressed <0.03 and FT4 and FT3 would be elevated above range.

    There is research to say that low (but not suppressed) TSH has no impact on bone density.

    The goal of Levothyroxine is to restore the patient to euthyoid status and for some patients that means that TSH will be low or suppressed. Read Dr. Toft's comments in Treatment Options in this link

    100mcg Levothyroxine isn't sufficient for many thyroidless patients to feel well but I've not read anything that supports the view that Levothyroxine is damaging to the body or that Liothyronine (T3) is less damaging. While throidless people may feel better on T4+T3 combination (I do) one still needs sufficient dose and the addition of T3 often suppresses TSH.

    My TSH is suppressed post thyCa, often undetectable or <0.01, and although I have mild osteopenia I haven't been warned that I am at risk of osteoporosis or atrial fibrillation due to suppressed TSH. There is a trial in progress measuring the effects of Levothyroxine on bone density in hypothyroid men but it won't be concluded or published for another year or so. It will at least take out of the equation the effect of menopause on bone density.

  • Are you sure that the bone loss etc. is due to the 'high' dose of levo? 150mcg doesn't sound like a high dose to me and I would have thought that for someone without a thyroid this would be a normal to low dose.

    I'm sure someone who can advise you will reply soon.

  • No I am not sure of this, only what I have been told!!

  • In the days before the TSH test - a useless test! - was invented, it was usual for people to take up four/five times that dose without any detriment to their health. Who told you that?

  • GP and endo too.

  • Well, we all know that they know nothing about thyroid, and use scare tactics to keep people on low doses. Quite why they want us on low doses, I Don't really know. On T3 - which they Don't want us on at all! - it's because of the cost, but T4 isn't that expensive. Perhaps they just really believe the lies spread by Big Pharma in order to keep us sick and on a million drugs to treat our symptoms - diet pills, blood pressure pills, anti-Ds and, above all, statins - which are making them several small fortunes!

    The truth is, when our dose is kept too low, we develope all sorts of other health problems - heart problems, nutritional deficiencies, etc - and become sicker and sicker, and live a miserable half-life until one of these hypo-related diseases finishes us off. What they want is just to keep us alive without making us well.

    Call me a cynic, but I know that's the way it is. Take no notice and get yourself well in any way you can. If that means a high dose, then take a high dose - you need the dose you need, not the dose some 'doctor' thinks you ought to need.

  • Not small fortunes, greygoose. Very, very, very BIG fortunes!

  • Yeah, I know, I was being kind.

  • I am sorry you are in such a state. I personally, and am not medically qualified, think all your problems are down to maybe being under-medicated rather than over. 150mcg of levo is an average dose. What I think the most important hormone which has been neglected is T3. I certainly believe that patients with no thyroid gland at all should have had T3 or be on T3 only. I will give you a link. All of the symptoms you state above are clinical symptoms of hypothyroidism. The following link is mainly about patients being restricted to 'replacement', i.e. keeping their TSH within range and adjusting doses up/down to keep it within the reference range.

  • Well just found a few results, to compare but they were last years. Vit D 110

    B12 128 active and T3 was 4.. It does say on the print out that my levels are consistent with hyperthyroidism because of over replacement. Last year the Serum Free T4 level was 21.6 now it is 19.1, The Serum Free thriiodothyronine was 5.1 now it is 4.3 and the Serum TSH level 0.05mU/L lOW tsh >0.05mU.lwith a high TF4 and FT3 which is consistent with hyperthyroidism - this is exactly the same this year.They are more interested in the cholesterol readings.

  • Pepekins, have you got the ranges for those results? They vary quite a bit from lab to lab.

  • Sadly on the print out it doesn't give any other figures.Looking at the one I had done last year Free T4 was 18.8 pmol/L 9-22.7

    TSH >0.06 mu/L 0.35 - 5.5 Thyroglobulin 0.1 but at the time I was taking a little more Levo.

  • The ranges of these would be helpful but I don't believe that a low TSH of >0.05 is hyper. I've often had 0.01. High cholesterol levels are more to do with hypothyroidism than hyper. On reading Clutter's response I do agree with her. You are probably undermedicated and should be given some T3.

  • The fact that your cholesterol is rising, should give you a clue. If you were over-medicated it would be very low. Been there, done that, and struggling to bring my cholesterol up again!

    Ignore what they say about cholesterol, it's all wrong, it will not give you a heart attack, and will probably make you more healthy. Those with the highest cholesterol live longest! So, resist the statins - the cholesterol won't kill you, but the statins might!

    Oh, and it sounds to me like you're not converting very well, but would need the ranges to be sure. In which case, you do need T3 - to protect your bones and everything else! :)

  • 'Morning Grey. I have just left a PM for you. I'd be grateful if you could read and advise me - going to Medicine this evening.

    Many thanks White Mist

  • OK :)

  • I would like to address you question as to whether switching to T3 is more beneficial than T4. The answer is that as long as you can convert from T4 to T3 (which you obviously can because you have T3 in your system and you have no thyroid to produce the small amount of T3 that the thyroid might otherwise do), then T4 is far better than T3. T3 on its own should only be used as a last resort for people who cannot convert. It's far more difficult to dose as you have no mechanism (other than yourself) to decide how much your body needs on an hourly basis. I was on T3 only (under an Endo) for nine years with a totally suppressed TSH and it caused osteopenia, and recently atrial fibrillation and two strokes (I'm 44). Mentally I felt great, invincible in fact and my symptoms were tiredness, constipation and brain fog (ie all symptoms that when I went on a forum like this one were all attributed to low thyroid). So be careful. You may find, like I did that you were compensating for other problems (like vitamin and mineral deficiencies or gut problems) with high levels to feel good. I'm now trying to convert to T4 (or T4/T3 combo and trying to improve my ability to convert with supplements and diet (eg selenium, iron etc). Good luck.

  • The only reason I was talking about trying to have some T3 is because my endo wishes me to take even less levo. 5 x 100 & 2 x 125 (which I have just been reduced to) is about the least I can manage on. If she wishes to reduce to 7 x 100 then I will be in a pickle and quite likely my cholesterol level will rise even further. (I do have familial high cholesterol) I eat a very good diet with a bit of butter and cheese, raw milk, lots of veg and fruit, some meat & fish. Various supplements to help bones (not calcium supplements) & flexibility, a little cod liver oil, linseed oil, cook in coconut oil and olive oil. Walk dog an hour each day, swim regularly and do 2 yoga classses a week, I don't really know what else I can do to be healthy. I was just wondering if she reduced the levo further if a slight addition of T3 would help me to get by. I am so ignorant about T3 and don't know the problems associated with it. On a more delicate note I don't and never had had constipation and don't suffer with cold symptoms. Quite the reverse actually but I have lost my eyebrows at the outer edges and my feet need constant atttention as they are so dry.Lastly I am about 12lbs overweight and reducing levo further will slow my metabolic rate even further.

  • Pepekins, I totaly disagree there, I'm afraid. Just be cause you have a little T3 in your body does not mean that you are converting adequate amounts. Your T3, as far as I can tell without a range, is too low and that is why you feel ill. Taking T3 will help this.

    If Sarahthyroid has evidence that T3 causes 'osteopenia, (which in any case is a debatable 'diagnosis') and recently atrial fibrillation and two strokes' she should provide the links of the research that proved it. Just because it happened to her, doesn't mean it will happen to you, and could, in any case, have been due to her taking too much or too little - she doesn't even say how much she was taking.

    I have been on T3 only for several years. It is not difficult to dose - you Don't even need a doctor because they probably know less than you. My TSH has been suppressed, of course, and my FT3 is probably over-range. But I feel well - better than I have for fifteen years of doctor-meddling and Under-dosing at their hands.

    But the only way you are ever going to know if it suits you is to try it. Start low, as you would with T4 and NDT, and build up slowly. You will know if you are over-dosed, and can come down again. Being on the correct dose of the right thyroid hormone replacement for you, has never harmed anyone.

    And yes, being anaemic - low in iron - does affect your conversion, greatly. As does being low in vit D, vit B12 and folate. They should all be tested and deficiencies treated - and a deficiency is less than mid-range.

  • When when I was on more levo last year Free T3 was 5. However

    last October it had gone down to 4 which I was told was about right!!!

  • Well, we really need to see the ranges to comment, Pepekins. Don't you have them?

  • See what I can do, they are not on the print out. Ta.

  • :)

  • P.S. forgot to mention I have been anaemic for most of my life. Does that hinder conversion?

  • Your cells use T3, - T4 (levothyroxine) can be seen as a storage mechanism for T3. You then convert from T4 to T3 to use it. So if you take T3 you will just be getting more of what you are already getting via T4. This assumes you are converting correctly (we know you are converting though). Anaemia definitely affects conversion and could account for differences in how you feel at different times. Need to get that sortd but watch out. The more you convert the more you will need to reduce your T4 dose. However, symptomS can be deceptive and over medication causes extreme tiredness and emotional symptoms and brain fog (the symptoms you complain of) but so does under medication, so be guided by your blood test results, your endo and not just your symptoms.

  • Thank you for your info probably ask for a test for ferratin

  • Having lost bone density, has your blood been tested for Plasma corrected calcium, 25-hydroxyvitamin D and Plasma Parathyroid hormone?

    I have been on Levo for 30 years and have recently been diagnosed as hyperparathyroid - I have not heard of any connection between the two.

  • No I have never had those tests.

  • Worth asking for them, particulary if your bone density has declined. Parathyroid glands control the calcium in your blood, if they produce too much hormone, calcium can be leeched from your bones, causing osteoporosis, kidney stones etc.

    Good luck.

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