The good the bad and the ugly

Well I haven't taken levo for a week now due to really bad side effects and some of the old symtoms have re- appeared, hair loss, slower bowel movements and a pulling sensation in my right eye. Mentally I feel much better and don't want to take more levo and become a walking zombie with headaches but the hair loss is freaking me out a bit. I see my gp tomorrow and I don't know what to do, she will say there's only levo and that's that. I just started the whole organic food approach to reduce my toxicity but may take a while. Not sure what my antibodies were either so need to find out and how to treat those, I heard that they may be a response to all the pesticides in our food and that they site on the receptor sites instead of thyroid hormones. Does anyone know how to stop this immune response. Does thyroid hormone just relieve thyroid demand and nothing to reduce immune response.

85 Replies

  • Angelica,

    Sometimes when we start medicating the hormone we are so deficient in, the body goes through many changes and symptoms may worsen for a while. As hormones take many months to rebalance, and symptoms often continue long after good biochemistry, meds should be taken for many months before assumptions be made.

    The standard care for a Hashimoto’s patient is to be prescribed Levothyroxine, replacing the missing thyroid hormone, but this approach doesn’t address the underlying cause of the problem (which is the immune system attacking the thyroid gland). If the underlying cause isn’t addressed, the thyroid treatment may not work too well. However, if you don't take your thyroid hormone replacement meds, you might make yourself even more ill.

    Possible causes of thyroid autoimmune disease are: genetic predisposition, infections such as viruses//bacteria, parasites, gluten, elevated oestrogen, low Vit D levels, intestinal permeability, environmental toxins (mercury//lead), etc, etc, etc ......

    Many members have found a gluten free diet to be beneficial in reducing antibody levels, and having optimal iron and nutrients. Also supplementing selenium which is known not only to reduce TPOAb but also raids conversion of T4- T3.

    Post any results complete with ranges (numbers in brackets) for members to comment.


    Gluten// Thyroid Connection.


    Selenium Reduces TPOAb

  • As far as I'm aware antibodies have only been checked once may 2015, was diagnosed Jan 2013, long wait but they were tsh receptor antibodies 1.9 U/L (H) < 1.0 free t3 4.7pmol/L 2.8. 7.1. Free t4 16.8pmol/L 9.0. 26.0. Tsh 5.19 my/L 0.27_4.20. Lymp 1.70x10^9/l there's others too but that was may last year they haven't checked since.

  • Angelica,

    TSH receptor antibodies denotes Graves Disease which makes your thyroid over active and would mean you should not be medicating Levothyroxine.

    However, hyperthyroidism results in a low TSH level when too much thyroid hormone is being made. Your TSH is slightly raised and thyroid hormone levels are fine.

    Antibodies are usually only tested once on the National Health as it is deemed once you have them, they are for life, but have you had other antibodies tested such as TPOAb ?

    I think you may have early onset Graves and if this were me, I would want further investigations before medicating Levothyroxine.


    Thyroid Antibodies

  • I've had this prob from the begining so the antibodies I have are for graves but I've been diagnosed with hypo.does and graves is only obtainable with hyper??? I'll mention it to my gp and ask to be re referred to the endo who said graves. What are TPOAb I haven't seen them on the results anywhere so I don't think I have.

  • Angelic,

    TPOAb are Thyroid peroxidase antibodies and can be present in people with Graves.

  • What were your side effects of Levothyroxine? Some people are sensitive to the fillers in the Levothyroxine pills, and find that changing to another brand helps. Other people find that when they first start taking Levothyroxine their poor tired thyroid takes a break and stops producing anything at all, so they effectively become more hypo until their Levo dose is increased. Other people end up buying something like Nature Throid, Thyroid-S or Thiroyd (different types of NDT - Natural Dessicated Thyroid) but doctors in the UK don't like you doing this, don't understand how to interpret your blood test results when you are taking it, and it costs money. Better to take Levothyroxine if you can make it work for you, but if not there are alternatives.

  • Extreme head pain all day all night, muscle weakness and weight gain, thinning skin, pale complexion compared to norm, over heating excessive sweating.

  • There's no guarantee that anything can stop the autoimmune response, but some people have a lot of success with gluten-free, dairy-free and/or sugar-free diets. Others find selenium helps. And a TSH of zero could also help, because the less gland activity there is, the less the immune system will be alerted and attack the gland. So, that's a very good reason to take the levo!

  • I'll adapt that gluten free into my lifestyle and have also began eating selenium, Brazil nuts,. What you say makes sense but I've never been very good at hiding from attack I'd rather fight but yes then adrenal fatigue joins the game. I've taken a levo today but really not happy with the antibodies approach. Won't they just attack something else like my adrenals and brain, that would explain my head pain.

  • No, Hashi's antibodies only attack the thyroid. Every immune disease has it's own specific antibodies.

    But, what else are you going to do about it?!? Science hasn't yet come up with a way to get rid of antibodies. Doesn't matter how much you like to fight, you have to have a plan of action, and there isn't one!

    Eating Brazil nuts is a very hit and miss way of taking selenium, you never know how much is in them, and some don't have very much at all.

  • Antibiotics kill antibodies I always feel better after I've had some. Which source of selenium do you reccomend?? We have Holland and Barretts and also a drop in the ocean and lots of Chinese herbalists. I went to one once he said if I drank this tea stuff 30 pound a months worth I would be better.

  • No, antibiotics do not kill antibodies. The fact that you feel better after a course of antibiotics is coincidental.

    Most of us here buy our supplements on amazon. They have a good choice of quality products at reasonable prices.

  • OK, I'll try amazon, thanks.

  • You're welcome. :)

  • Not enough is known about autoimmune conditions and what may trigger it. I grow most of my own food, but still have 3 autoimmune conditions. Your body needs the hormones your thyroid used to produce, it needs it so much that without it you would die. It is like running a car without oil.

    Your GP is wrong, there is T3 available and NDT. After years of struggling, I bought my own NDT - for me it is the most natural as it mimics what your thyroid used to produce. It contains T1, T2, T3 and T4. The medical profession do not know what the first two do, but nothing in nature is superfluous. They obviously do something.

    I was at rock bottom on T4 alone. This site educated me, and I am now almost well. I am enjoying life which is a vast improvement.

    Ask your GP to test your Vits as if these are low, it affects how effective the hormone replacement is. Dont give up - it may be a long and bumpy path, but the end result is worth it.

  • Is it possible to be hypo and graves with ted. How are your antibodies with the meds you take. I'm interested nobody has mentioned t1 or t2 did you find out

  • There is no guarantee that there is T1 and T2 in NDT. There is no given content of these two, as there is for T3 and T4. It could be that they are destroyed in the processing of the glands. Besides, they would be very, very tiny amounts, because the bulk of T1 and T2 comes from conversion.

    You could very well have Hashi's and Graves at the same time. Ask your doctor to test for TSI or TRab, TSH Receptor antibodies or TBII.

  • They did tsh receptor antibodies 1.9U/L ( H) <1.0

  • You possibly do have Graves, then. Didn't they tell you that?

  • Endo wrote to gp and said possible graves how do they treat graves I'm only on levo

  • Well, your Graves obviously doesn't need treating because you are hypo, so the Hashi's has the upper hand.

    Besides, once again, there is no treatment for antibodies, but if you were hyper, they would give you something to reduce the amount of hormone your thyroid is producing.

  • To prevent the antibodies attack. So they must be alerted by something. Once the thyroid is destroyed would you still test positive for the antibodies?

  • I know no way of controlling Graves antibodies. Graves is not the same as Hashi's.

    The Hashi's antibodies are 'alerted' by gland activity. But I'm not sure how Graves works.

    Once the gland is destroyed, there will be no more Hashi's antibodies, but the Graves antibodies will still be there.

  • So t2/t3 is not a precursor then perhaps the gland converts t3 t0 t2 and maybe that's when its active??

  • What? lol Sorry, no idea what you mean, there.

    T4 is converted in the liver/tissues to T3 and rT3. RT3 and excess T3 are converted to T2. Excess T2 is converted to T1.

  • Is the r for ribsomal or reverse. So r2 remain in the cytoplasm?

  • It stands for 'reverse'. I've never heard of r2, why would it be in the cytoplasm?

  • Reverse transcriptase's occurs In the cytoplasm.

  • That's an enzyme. What's it got to do with T3? T3 is a thyroid hormone.

    Do you know how T3 is made?

    A molecule of T4 has four atoms of iodine.

    To make T3, one atom is removed and recycled.

    But, sometimes, to save energy, when one is sick or malnourished, the wrong atom is removed so that the molecule of rT3 does not fit into the receptor.

    The body is forced to slow down because it has less T3 in the cell.

    The rT3 is later converted into T2.

  • No its a process, so you believe the theory about the transport molecule making the process active not passive.

  • Cellular level testing is not available that canncannot be proved as fact.

  • Not available to the general public, no. But what's that got to do with anything?

  • The only way I could think of checking on a cellular level would be likened to DNA testing and that would be on a non active cell which I very much doubt would be accurate anyway.

  • What's the side effects like???

  • Would this account for cellular issues, lack of t2 is that what there saying.

  • Maybe t2 is small enough for diffusion

  • So ndt has t2, why is starting tricky?? Pls tell

  • My doctor says they only give that to cancer patients.

  • Sorry your link didn't work.

  • Angelic69,

    Link works for me. Try again :)

  • There is no proof that NDT has T2. That is just a guess on the part of those that favour NDT over synthetic to try and explain why it works for them. It is not scientific fact.

  • Science is usually based on theory that cannot be disproved is it not.

  • Well, then, it is just a theory that NDT contains T2 and T1. There is no proof of any kind.

    But, if you're set on getting NDT uniquely because you think it contains T2 and T3, be prepared to be disappointed.

  • No I'm glad I'm not on it because then I would have cancer.

  • What??????????? Are you having me on? I don't think I'm going to answer any more of your questions, because you're just talking rubbish.

    I see... your doctor told you it's only for cancer patients. Do you still believe everything your doctor says? Have you not yet understood that doctors know nothing about thyroid and talk the most unutterable rubbish on the subject. You just cannot believe a word they say!

    NDT does not give you cancer, and it is not just for cancer patients to take. It is for anybody and everybody who wants it. Lots of people on here take NDT who have never had cancer. Your doctor is telling you that because he doesn't want you to take it, because he knows nothing about it. He would be totally out of his depth trying to monitor you on NDT.

    It seems that doctors have no qualms about lying to patients! :)

  • Maybe they got there masters from the joke shop

  • Is that where you got yours?

  • A doctor whom I trust assures me that ndt is only given to cancer patients.

  • He's either very ignorant, then, or he's lying. Sorry, but that just is not true.

    Not in general, anyway. Maybe he just means HE only prescribes it for cancer patients. But I can assure you that plenty of non-cancer patients take NDT - took it myself for a while, prescribed by my doctor.

  • Why did you come off it??

  • Because, I discovered, I couldn't tolerate any form of T4, and needed T3 only.

  • How did you prove intolerance bloods or other

  • Other. It's a long story!

  • Theory is also ascertained by logical physiological symtoms that can be proved.

  • Doubtless. But it has not yet been proved that there is any T2 in NDT.

  • If symtoms are relieved and t2 is responsible for rt2 we can theorize that your issue would be associated with the inability previous meds to cross from blood into cell itself. If t3 and t4 are found in the blood only and t2 within the cell itself however your t4 only med cannot cross the semipermeable membrane which will result in adequate blood levels but no cellular relief.

  • Who said that T2 is only in the cells. Who said there's such a thing as rT2? I've never heard of it. I doubt there is a mechanism for making rT2. What purpose would it serve? rT3 is not haphazard, it serves a purpose.

    How would you know that T2 was responsible for relieving your symptoms? Nobody even knows what T2 does, yet.

    Excuse me for saying this, I don't mean to be rude, but I think you're talking complete gibberish. You are making insane presumptions with absolutely nothing to back them up.

  • Blood tests back it up with adequate levels of t3 and t4 no relief of symtoms.

  • A minute ago you were talking about T2, rT2 and god knows what else, not T3 and T4. Do you even know what you're talking about?

  • Angelic69,

    "If symtoms are relieved and t2 is responsible for rt2 we can theorize that your issue would be associated with the inability previous meds to cross from blood into cell itself. If t3 and t4 are found in the blood only and t2 within the cell itself however your t4 only med cannot cross the semipermeable membrane which will result in adequate blood levels but no cellular relief."

    When you quote extracts from an article please include a link to the article.

  • You dont have to prove contents just measure patients relief and decrease of symtoms and lack of side effects that's proof enough.

  • That's enough. I'm done!

  • lol Delicious! :)

  • DTE then is not ndt though is it.

  • Desiccated Thyroid Extract (DTE) is an old term that was widely used within medicine when porcine products were the standard treatment.

    Natural Desiccated Thyroid (NDT) is a more recent term used widely in the non-medical world.

    Both refer to the same thing.

    If you had actually read through the link posted by eljii earlier, you might have seen this sentence:

    Patients (age 18–65 years) enrolled in the military healthcare system who had been diagnosed with primary hypothyroidism and were on a stable dose of l-T4 for at least 6 months were studied. There were only 2 patients taking DTE, Armour thyroid (75 and 105 mg/d, respectively), before the study, and the remaining patients were on l-T4.

    Which very clearly shows that the authors refer to Armour Thyroid as DTE.

    If you think DTE isn't NDT, then please tell me what on earth you think it is.

  • I've been told its only associated with cancer patients. primary hypothyroid patients get levothyroxine.

  • And just how many times do you need to be told that is incorrect?

    From the very late 19th century through to the 1950s (or even 1960s) desiccated thyroid was the standard treatment for hypothyroidism.

    As synthetic levothyroxine and liothyronine became dominant, the prescribing of desiccated thyroid reduced. But it has never been a matter of cancer.

    If any thyroid hormone has ever been associated with cancer treatment, it is liothyronine. And that for very specific reasons concerned with iodine uptake, etc.

  • liothyronin and ndt are the same then. A professional would not lie as he could lose his job, income, home ect. Why risk it, why would he.,

  • No.

    Of course they are not.

    NDT is dried, defatted pig thyroid containing T4 and T3.

    Liothyronine is synthetic T3 only.

    You could have got the wrong end of the stick? Or he is someone to run away from.

  • If its the same why change the abbreviation. Why did they feel the need to add natural, I believe that if your body is not making adequate thyroxiine, everyone affected should have the same meds. None of this postcode bull, private bull, taxpayer bull, it should be about all for one and for all.

  • I agree. And everyone should have the same antibiotics for every infection. None of this rubbish about giving people antibiotics that work. And why doesn't everyone drive the same car and wear the same size clothes?

  • Apparently some are more equal than others.

  • Now whose being silly. I wish everyone education. Hmmm.

  • I was just joining in with the general level of silliness displayed in the rest of the thread.

  • Especially in English...

  • sense

  • are not playing whose having the last word

  • Then please do tell us what we are playing, because I don't know the rules of this game. I thought it was 'who could make the most nonsensical comment', in which case, you win hands down! You've obviously played this before. Whose forum was it last time?

  • are muddled fair comment. Letters disappear have a bug

  • It isn't the medics who wrote the paper who changed the abbreviation!

    I don't know who came up with term "Natural Desiccated Thyroid", nor when. I detest the term. It sounds like a marketing slogan. It causes confusion between the products like Nature-Throid, Erfa, Armour Thyroid which have known amounts of thyroid hormone and the non-prescription food supplements the thyroid hormone content of which is obscure at best.

    I flat out 100% disagree that everyone should have the same medicines. We are all different and we each need whatever it is we need and that might vary very considerably between people.

  • If your meds render you dumbfounded how can you expect those individuals to voice there concerns to doctors that are over stretched and worn out themselves. Come on your talking about those that can pester and haven't been medicated to the point of meloncolly will be served and that's that.

  • So patients can only "voice their concerns" if their doctors are well-rested and had a good night's sleep?

  • old trick

  • I wouldn't mind some of that DHE is it bio identical to our own bodies thyroxine. Would like to no more about patients state of mind.

  • Lookup great website stopthethyroidmadness dot com. She tells you more than you knew you needed to know. I'm a licensed nurse and they never taught us all the pertinent information we needed. I learned more from this lady than the crappy school I paid for.

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