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Levothyroxine >recommended dose

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carolwebspresso
carolwebspresso

Diagnosed hypothyroid >10 years. I have struggled all of this time to feel 'normal'. Drs have continually increased Levothyroxine to attempt to normalise TSH. Six months ago they prescribed 300mcg. The pharmacist queried this! I take it regularly, without food etc.  I am still symptomatic and free T4 & T3 still low. Anyone else on this dose without effect? 

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  • libralady13
    libralady13 carolwebspresso

    Posted

    300 is a large dose.  You may need a different type of treatment if you are not responding and still have symptoms.  I know how difficult it can be to treat for some people and everyone is different.  What is your TSH now.  I believe that some in the medical profession say you need to look at the complete thyroid function results but most gps just go with the TSH and also use an out of date range.  There are those on this forum who know a lot more about this subject.

    Also how are your vit D levels my own tsh changed after being on Vit D3.  I think they say that hypothyroid patients are often low on this vitamin.  Hope someone here can help you.  I would think you need to see a specialist if you haven't already.  Good luck.

    • jefffcc
      jefffcc libralady13

      Posted

      Look up thyroid hormone resistance can be high or low tsh and sub normal t3t4.... and still can be hypo , or hyper...
    • jean34329
      jean34329 libralady13

      Posted

      Hi

      I was very interested to read from your posting that the TSH changed after taking Vit D3.

      This explains a lot in what has been happening to me over a number of years but a thyroid disorder was never even suggested until on April 27 2015.an incidental finding of a multinodular goitre showed up on a CTPA scan to exclude another pulmonary embolism .

      My TSH was 0.17 Free T4 was `16.5, TPOA were less than 33.

      I have twenty nodules on the thyroid.

      Still untreated.

      never diagnosed until April 2015.

  • jefffcc
    jefffcc carolwebspresso

    Posted

    Hey Im sorry to hear that... look up thyroid hormone resistance.... it is related to normal low t3t4.... but low or high tsh seen that you an have this from my opinion.... check on copper toxicity do you have a Cooper iud.. do u drink tab water.... if high on Cooper check if you have Cooper toxicity... after you reasses that if you don't have a Cooper iud or drink tab water and low cooper.... try taking a thyriod supplement... make sure it has thyriod L-trysione and other herbal supplement even a slight dose of cooper since Cooper is a hormone balance supplement ...our body is ran by gene therapy... by giving your body vitamins and supplements it restarts certain genes and makes them start working and start your body to regenerate organs and body in general....
  • kathleen61417
    kathleen61417 carolwebspresso

    Posted

    It could be that rT3 is raised and if they go on increasing T4 Levo its bound to increase even more. From what I have learnt if this is the case you need to take T3 to lower the rT3. There could also be antibodies present. Another thing Doctors are not doing is to correct the adrenals. The problem in the UK is that the CCG's and Doctors are listening to the RCP not their patients. Another thing is that T4 is very cheap compared to T3 or NDT and the most likely reason for not prescribing it even on a named patient basis.
  • jefffcc
    jefffcc carolwebspresso

    Posted

    if you want be cured It called adipose stem cells and bone marrow stem cells... I have found three published areticles they are government legit... ncbi....cinical studies... over here stem cell procedure cost 5000-8000$ usd....but I know from research it works...it either fixes hormone issues and slowly makes thyroid issues disapear...not lying send me a private message will give u info.... I'm currently have to rule out my that my hyper/ hypo tsh and hypograndism is not caused by a pituitary tumor in the brain and will take stem cell..I will pull 10,000$ to just have my life back...please do your research to see what suits you

    ...

    • kathleen61417
      kathleen61417 jefffcc

      Posted

      This procedure has not yet reached the UK let alone under NHS. Remember too a lot of thyroid patients are not well enough to work so cannot afford this expensive treatment.
    • jefffcc
      jefffcc kathleen61417

      Posted

      I totally understand it is important to do gene therapy with thyroid supplments and minerals to unlock the bodys chemistry to see if supplements and minerals can start the healing process.... I been reading that certain supplments trigger certain genes in the body and you just have to try til you find the supplements.... Gene therapy with chemo , herbal , and supplment are being studies on how it work on dna... which comes down to gen therapy...

      I know in europe adipose and bone marroe stem cell is big over there over here I found three places in las vegas.. and two in California buy all are self pay clinical studies...fda cannot close these stem cells since these are not presidential stem cells nor embryonic. ...

    • barbara98940
      barbara98940 jefffcc

      Posted

      Jeffcc, thank you for posting about the research into stem cells etc. I like knowing what is out there and may be coming in the future. These breakthroughs are often rare and expensive to start with, then become more more mainstream and cheaper with time. It gives me hope to know tthere is another treatment available, even if I can't afford it at its current price.
  • jefffcc
    jefffcc carolwebspresso

    Posted

    Please post latest blood work tsh t3t4, state if gotten ultrasound od thyroid like nodules goiter thyriod cancer.... it will expand my mind and I can dig a deeper answer to help you out...
  • pooja46
    pooja46 carolwebspresso

    Posted

    Yes , vailed points. RT3, and VIt D.

    Also read about Fibromyalgia in thyroiduk org uk

    Apparently these two condition share same symptoms , so could be same underlying cause . So T3 might help both . 

    Doctors less than 40 yrs , ie, doctor graduated after 1990 would know about this condition better as it was only officially recognised and was given a name by American rheumatology society only recently. 

    but you mentioned your T4 T3 is low. , 

    Read about the thyroid test , thyroid harmone transport in nahypothyrodism org , it will help you to understand how to read your results in reality. 

    Good. Luck ... Keep seeking answers if you don't feel right. It's not all in our head dear . 

    • barbara98940
      barbara98940 pooja46

      Posted

      Some doctors think fibromyalgia is a result of incorrect thyroid hormone levels in one's cells not being correct.
  • barbara98940
    barbara98940 carolwebspresso

    Posted

    The recommended dosage is 1.7mcg per kg of body weight. I only went up to this dose when I was pregnant. I can tell if my thyroid is underactive by my basal pulse rate, that is my pulse taken first thing in the morning before I get out of bed. If it's below 60 I'm undertaking, over 70 I'm overactive.

    I have since found out my body is not doing the next bit of the process very well, that of converting T4 to T3. It is worth asking your doctor to test T3 as well as TSH and T4, to see if this is the case for you too. Ask for a copy of your blood test results and look to see the relative position of each result within its range. For example, if T4 is middle of its range, T3 should also be in the middle of its range.

  • shellyC19
    shellyC19 carolwebspresso

    Posted

    Hello Carolwebspresso:

    I am a nurse and live in the USA.  I have Hashimoto's thyroid disease.

    It sounds like you have a problem like I had years ago. I took LEVO and never got my TSH normal.  My TSH was never right despite raising the dose.  I can't convert T4 into useable T3.  Our thyroid is to take the LEVO which is T4 and make it into T3 by way of the thyroid gland.  I was on NDT but now I am on just T3 called Liothyronine.

    I suggest you try NDT which is a natural thyroid hormone made from the pig's thyroid gland.  NDT contains all 4 hormones that your own thyroid would make.  It is a much better replacement hormone.

    Raising the LEVO is not the answer.  Plus that dosage is not safe.  See a good Endocrinologist who knows the thyroid better. 

    You also need a full mineral panel (blood work) to include, sodium, potassium, calcium, ferritin, magnesium, iron, and a vit. D level. Many of us have low vitamin D and there is linkage to thyroid disease.  It is a special test and takes about 1 week to do.

    Let us know how you do,

    Shelly

    • LAHs
      LAHs shellyC19

      Posted

      I read somewhere that the average Armour Thyroid dose in England is  3 - 4 grains. This is the equivalent of 300 - 400 mcg's Levo. I thought this was very high. Does any one know if this is true or baloney?
    • shellyC19
      shellyC19 LAHs

      Posted

      Hello LAH:

      1 grain = 60mg what I was taught in Nursing school so if it was 3 grains it would be 180mg.

      XO, Shelly

    • shellyC19
      shellyC19 LAHs

      Posted

      Hello LAH:

      I did the math 300mcg is equal to 0.3 mg. 

      1 grain is equal to 60mg. So at 3 grains 180mg  4 grains  = 240mg. However NDT is formulated differently and that it is not a synthetic so that has to be taken into consideration.

      XO Shelly

       

    • kathleen61417
      kathleen61417 shellyC19

      Posted

      Shelly I have in front of me Nature-Throid one grain and it states t3 =9mcg and t4=38mcg Calcium 17mg and magnesium and sodium less than 1mg each.

      I have also been seen by an endocrinologist today as my heart rate has been worsening in irregular bpm. She said that the T3 would be the cause in that NDT contains too much T3 to T4. She has therefore suggested I take 50mcg t4 and 10mcg t3 twice a day. She has on top of this admitted that something else is adding to my thyroid problems and I said YES the pain in my groin that is like glass sticking in and most likely caused by the mesh TVT. I have also had thyroid tests which also included FT4 and FT3  and have another test in one months time having been on the change of medication. Bear this in  mind that other health problems can in turn affect the thyroid. There are also different arreas in ones body that convert the T4 to T3 the working hormone, but T4 is said to be longer lasting than T3. On top of all this the fact that I have been taking NDT suppresses the TSH and so does taking all T3 and according to the Endo it is suppressed due to too much T3.

      Endocrinologists are non too pleased if the instructions on the bottle are not in English in the UK. Does this in turn apply to other countries who's patients are taking medications without their language on the bottle.

    • LAHs
      LAHs shellyC19

      Posted

      Shelly and Kathleen,

      OK, I think I have the Rosetta Stone. I wrote back to that source and got a reply:

      To Administrator

      Please can you repost/repeat something I read somewhere but I cannot find it now? It was the average dose of Armour in grains. I thought you said it was between 3-4 grains in Britain. Was this correct? If I translate that to the equivalent dose of Levo I get 300 - 400 mcgs, which is very high. Maybe I am missing something, could you elaborate on this dose please?

      Thankyou,

      Lahs.

      From Administrator

      LAHs, I'm pretty sure it's Mary Shoman who says the average is 3-5 grains and that will be in the USA as NDT isn't widely used in the UK. It really doesn't matter what averages are, people need as little or as much as they need.

      Manufacturers state that 1 grain is bioactively equivalent to 100mcg T4,not that it is equivalent to 100mcg. The actual T4+T3 content in one grain is equivalent to 65mcg T4 if you use a 3:1 T3:T4 ratio, or 75mcg if you use 4:1 ratio.

      Admin.

      I still have to give this a bit of thought, but there it is for the time being,

      LAHs

       

    • shellyC19
      shellyC19 LAHs

      Posted

      Hello LAH:

      Oh that is a good answer.  I agree with that. 

      Shelly

    • shellyC19
      shellyC19 kathleen61417

      Posted

      Hello Kathleen:

      I know other areas can help convert the T4 into T3 but since this is about low thyroid TSH or the like, I keep it simple.  Of course the liver helps and intestines,  other organs, etc,...but to answer in a person without giving a whole anatomy lesson and then some, I keep it simple to just the thyroid unless the person has no thyroid left.  

      I could really expand a lot but to the person reading it, I do not want to overwhelm them. Many people have no idea what a thyroid is let alone another organ, and the functions,  etc...

      In this conversation we are talking about her LEVO, and her many years of not getting good reults in "TSH LAND" and some of us no matter what the dosage or how it is absorbed, can't  take T4.

      I know other health problems like LUPUS, Cancer, Diabetes, etc..... can effect the thyroid so yes, if I want to write all of that I could...what is your question to me? I don't see a question.

      I am writing to help people.  I doing this from my knowledge of over 33 years as a nurse (RN).   NDT contains all 4 thyroid hormones and has a 3:1 ratio per the administor of this forum. That means it is more T4 than T3. see answer to LAH below.

      I am sorry your have a heart rate problem.  Stay well, Shelly

    • jean34329
      jean34329 shellyC19

      Posted

      Hi Shelly

      I wholeheartedly agree with what you have written and reinforce that it is important to stick to the issues raised.

      I hope you do not mind my saying so but I have always found your responses very accurate, informative and clearly written.

      We are lucky to have your invaluable input on this Forum.

      Jean

       

    • shellyC19
      shellyC19 jean34329

      Posted

      Jean,

      Thank You very much.  It means a lot to me.

      XO Shelly

    • jean34329
      jean34329 shellyC19

      Posted

      Hi Shelly

      You are welcome.

      Very welcome indeed.

      I was told nothing about the thyroid and if it had not been for yourself  then I would be in the dark. It is one thing researching on the net but it is not the same as actually communicating on a one to one basis with another person especially a very knowledgeable and experienced person such as yourself . It is only when one is in a position to do that that one can feel truly safe,supported and confident.

      I have always found that the information that you give is honest, genuine, accurate and completely relevant.

      This thyroid business is indeed very frightening, there is no doubt about it.

      Please continue to help us.

      With kindest regards

      Jean xx

    • kathleen61417
      kathleen61417 shellyC19

      Posted

      Shelly my TSH is low, and I am told by the Endocrinologist that the T3 in the NDT is suppressing the TSH. I am also finding it very odd that the Endo states that NDT is not in a correct ratio for the human thyroid and too much T3
    • barbara98940
      barbara98940 LAHs

      Posted

      LAHs , I read that the human thyroid produces thyroid hormones in the ratio T4:T3 of 13:1 and that pig/cow NDT is at ratio of 9:1, hence to get the ratio correct when prescribing NDT some doctors prescribe T4 with the NDT.
    • kathleen61417
      kathleen61417 shellyC19

      Posted

      Shelly I will have to repeat this as it did not allow me to finish.

      My TSH is low and the reason I am told by the Endocrinologist is that the T3 in the NDT is suppressing my TSH, but too much T4 has also done this in the past.She also stated that the NDT which comes from pigs thyroids is not in ratio of what the human thyroid has. NDT has too much T3 to T4. I like others find this very confusing. It is also no good telling patients in the UK to go to their GP or Endocrinologist for help if taking their own NDT or T3 as they do not agree with anything other than T4 and if you are lucky enough you will get prescribed 10mcg T3 twice a day.

    • jean34329
      jean34329 kathleen61417

      Posted

       Sorry if I misunderstand you but are you saying that even Endos in England refuse to do the T3 and T4 together?

      Jean

    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean in England the Endo's or shall I say some of them will prescribe a limited amount of T3 with T4 but only if you or they think you need it. They have only prescribed a limited amount of T3 which is 10mcg twice a day so you have to cut a 20mcg pill in half. Its no good asking a GP or Endo to prescribe T3 as they won't unless they prove that you need it. The problem is I tried to obtain my prescription today and the T3 is only obtainable on Special which takes 10 days to obtain.

      The ration of NDT T4 to T3 is 14:1 and the ratio in our thyroids is T4 to T3 17:1, so unless you cannot convert T4 to T3 there is too much T3 in NDT for the human thyroid.

      From what I have seen and heard from others the care of Thyroid patients in the UK is poor. You are lucky if you have a good supportive GP.

    • jean34329
      jean34329 kathleen61417

      Posted

      Hello Kathleen

      sounds as if you have overdone things today. i would advise ringing the pharmacy in future to make a specual arrangement to get your ndt when you need it rather than repeating the procedure of having to wait 10 days before you can be treated.

      Did you let your dr know you have to wait ten days?

      Ten days is a long time to wait. Did thy give a logical reason for the delay?

      Can you ring round ro see what other pharmacies waiting/delivery time is?

      Jean

       

    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean its not NDT as I have no problems getting my own from abroad. It is the T3 that has to be ordered on special which takes 10 days but seeing my GP tomorrow, but of course I do have a good excuse to stay on NDT.

      In the UK there is also only one brand of T3.

    • LAHs
      LAHs barbara98940

      Posted

      Hi Barbara you are dead right. My philosophy (and what I do) is to take the NDT in the slightly "wrong" proportions - and for me I can use a little extra T3 (because I am a feeble converter of T4 to T3). BECAUSE: if you leave it to your doc, who cannot even get your T4 dose right (when that is only one of two variables s/he measures) just imagine how s/he will mess you up if they have to work out 13:1!

      They don't even measure T3, so you will stay ill for a very long time (2  1/2 years for me)  before you are so ill that you go in screaming that they fix the problem - and even then they will screw up. We are really on our own to read, study and understand this system, so that we can fix ourselves if necessary - and in my case, it was.

    • kathleen61417
      kathleen61417 jean34329

      Posted

      I believe Jean that the brand of T3 in the UK used to be Goldshield, but I think they sold the company. My NHS prescribed T3 came in a bottle which only had the name of the pharmacy on it. It also has methylated spirits in it which I do not like the idea of.
    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean you cannot get a prescription for NDT. I get mine from abroad or from Amazon and you have to pay for it. The problem is if you have to pay VAT /import tax, which then entails a postal charge fee for handling.

      I think Jean I am not sure in your case it would be a good idea to go taking NDT as  it concerns me about those nodules, which I think are what needs treating.

    • jean34329
      jean34329 kathleen61417

      Posted

      Kathleen

      It sounds as if it came from a large container. Is this drug normally dispensed in this format.

      Meths is a solvent. Not ideal for cardiac arrhythymias or anyone with breathing/respiratory problems. Also solvents affect other organs including the brain and kidneys.

      Need to find out from your pharmacy what the name of the manufacturer is then contact that manufacturer for a Product Data sheet. They have to supply this under Health and Safety legislation and the Data Protection Act.

      How do you know how to treat an overdose or allergic reaction to something if you d not have a FULL list of the ingredients and ratios.

      Jean

      .

      Jean

    • jean34329
      jean34329 kathleen61417

      Posted

      kathleen

      Do not worry. I have no intention of taking anything until it is thoroughly checked out by ME.

      NDT.

      Some drs will prescribe NDT on a named patient basis. and they will direct you to pharmacies guranteed to dispense it.

       Barbara knows much more about this than I .

      I am mtrying to get the treatment for these nodules but so far have been thwarted by two endocrine surgeons .

      Jean

       

    • jean34329
      jean34329 LAHs

      Posted

      Hear hear.

      Money for old rope.

      I am going privately.Even then you have to be careful as I recently found ut when I went to see an endocrine surgeon who did not even do any bloods. He tld me that he is not required to treat sub clinical hyperthyroidism as there is no evidence that it will work. Yet the internet states that it is mandatory.

      .I told him not to write to my GP as he will only muddy the watrs and make a fool of himself!

      HE STORMED OUT OF THE ROOM .

      Jean

    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean it is only a small bottle and only one months supply.

      The situation is even worse when you have like me an allergy to latex as they are not marking if things even glue has any chemicals in it that cause allergy to latex. Firms should be made to mark down all chemicals used in their products in the language of the country it is sold. One thing they cannot do as there is not room is to put it in every language.

    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean I have been told too by the DOH that NDT can be prescribed on a named patient basis but don't count on it as my GP has said he will not prescribe it using the excuse he knows nothing about prescribing NDT and you will also be faced with a long search to locate an Endocrinologist who will prescribe it, but even if you do find one your GP may well turn round and say no.
    • jean34329
      jean34329 kathleen61417

      Posted

      Can you get a private endo then arrange for him to send you prescriptions. At kast you will know what you are getting and that it is not contaminated.

      Jean

    • kathleen61417
      kathleen61417 jean34329

      Posted

      Jean when I saw a private specialist over my mesh tape before getting NHS referral it cost then over £200 so how much it would cost now let alone private prescriptions and even if they agreed and not all private specialists would condescend to prescribe NDT. I simply could not afford that. What I might do is to get the prescription for T4 and use it alongside my NDT and keep mum until the test results.
    • jean34329
      jean34329 kathleen61417

      Posted

      I honestly do not know what to advise about medication I would be guessing and that is not good enogh.

      I  take your point about the expense involved in going private. I am sure that others on the forum can advise you on thyroid medication issues.

      I am sure that things will work out .I can see that you are a problem solver.

      Jean

    • shellyC19
      shellyC19 kathleen61417

      Posted

      Hello Kathleen:

      I think I understand the problem. First of all, with any hormone when you take it, the body senses it and if the level coming into the body is too high the body will not make it's own. It acts like a "shut off" button.

      The pig's gland is close to a humans gland. They were making NDT way before the synthetic ones. The problem lies in absorption of the hormone in our bodies and the way we convert it.

      In some of us, maybe the ratio is not a problem. However, we are all so different and maybe that a little extra T3 is harmful and bad effects like low heart rate can happen. Of course it can be dangerous if the heart rate is too low or even too high.

      I have heard via this forum that NHS supports only T4 meds. I guess it is hard to get any exemption.  I could not convert T4, and it took many of years to find that one out.  Once my doctor figured it out, and I started taking only T3, it was a night and day difference.

      I was on NDT for a while and it did help some.  Now I only take Cytomel (Liothyronine) and it is only T3.  I paid triple for it via my insurance plan. Levo is $4.00 for 30 days and Cytomel is $12.00 for 30 days.  However it works on me.

      The whole picture is to see what works on you!  A lot of it is Trial and Error, and some doctors don't have a clue on what to do. When they say  "practicing medicine" the word Practice is just educated guesses.

      Stay well, Shelly

    • shellyC19
      shellyC19 kathleen61417

      Posted

      Kathleen:

      One of the reasons I stopped taking NDT, was it was hard for my local pharmacy to obtain.  I had been told it was not going to be supported anymore! Some places will not stock it if they only have a few people on it.

      I have heard you can get it on-line and of course that is not covered by NHS.  I think LAH, on this forum reported Hillary Clinton is on NDT, so I guess they will still make it.  LOL.

      Shellybiggrin

       

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