Hashimoto disease vs regular bad thyroid?

chunt87
chunt87 Posts: 161 Member
edited November 13 in Social Groups
Hello. I had been on synthroid with all kinds of problems for the last year and a half and finally got to see an endocrinologist. They ran some tests, and as it turned out I have hashimoto because my antibodies were very high. I asked to change medication so my endo put me on westhroid/nature-throid (they are the same thing with different name made by same company) and today was day one.

I hope I notice a difference with my energy levels and water retention and constipation issues within a week or so and the hair issues down the road.

My questions are for people in this group what is the difference other than the antibodies with regular hypo versus hashimoto hypo, like what is to be expected down the road?

Has natural thyroid helped you feel better?

Replies

  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    edited February 2015
    My understanding is that you only have antibodies from an autoimmune response. As far as I know, Hashi's is the only autoimmune thyroid condition (though I'm not sure about this).

    So, with Hashi's, you often have TPO or Tg antibodies (the two that are well known). However, it is possible to still see inflammation without these two antibody markers through a scan, though this is far less common (something like less than 10% of Hashi's diagnoses -- the person's thyroid is still having an autoimmune response but just to other specific proteins than the ones associated with TPO and Tg tests).

    So, if you are hypo by some other mechanism, then you don't have antibodies because it's not autoimmune based. Generally, these types of people respond well to medication and don't have the swings that you see with Hashi's. Hashi's can have swings, especially early in the progression of the disease, in response to the autoimmune response. Essentially, you have an autoimmune response (they don't really know why, but some suspect certain foods or environmental factors can provoke one), it 'attacks' your thyroid and proteins/hormones, making you feel hypo, your thyroid (if still high functioning) creates more hormones, the autoimmune response stops and you end up hyper due to the now extra hormones. So, with Hashi's, it can be difficult to medicate properly due to these fluctuations caused by the autoimmune response.

    Some people have found relief through making sure that their other systems are at good levels (various vitamins/minerals, DHEA, blood sugar/insulin resistance, etc.). Many supplement with DHEA in particular as many hypo women also have low DHEA levels. There has been recent research showing the supplementing with Selenium (I think 200 mg per day) has shown an improvement in inflammation and autoimmune responses with Hashi's patients.

    Some people find that they do better eliminating certain foods from their diets because they spark an autoimmune response -- gluten/grains is a common one, so is lactose and casein from dairy. Other people don't have any food allergies/sensitivities.

    Some find that they fare better on the naturals (Armour, Nature-throid) rather than the synthetics (Synthroid, Cytomel), though why this is isn't clearly understood. Some speculate it's due to some autoimmune issue, others speculate that is has to do with the fact that the naturals have all the thyroid hormones T1, T2, T3 and T4 -- though no one really knows what role T1 and T2 play which is why the synthetics only supplement T4 (Synthroid) and T3 (Cytomel).

    My doc -- who is a thyroid specialist -- says that his Hashi's patients tend to fare better on the naturals and that's what he recommends they use, but the choice is up to us. He freely admits that why that is isn't well understood but that is what he's personally seen in his practice. It seems like a lot of docs highly favor the synthetics, but why this is isn't totally clear to me as there really is no difference in precision in the dosages anymore. Is it just because that's the way it's been done? Maybe. Are there kickbacks from the drug companies? Maybe. I don't know. It seems like more docs are starting to see the value of the naturals, but it really still depends very much on the doc.
  • chunt87
    chunt87 Posts: 161 Member
    Wow thank you for all the information lindsey! we don't know why I have hashi because nobody in my family had that- just regular hypo. It makes sense that my thyroid stopped working about a year and a half I guess, as the entire year beforehand I was terribly sick. I started to get a terrible rash, lose hair, hot and cold flashes along with weight fluctuations that were insane. Hopefully on this medication my weight can stabilize so I can lose more effectively than I have been.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    My best guess is that some of the other hypo people probably were Hashi's. My mother didn't get diagnosed hypo until she was in her early 50s. She had/has Hashi's but it was never diagnosed until she lost so much thyroid function that she was overt hypo.

    Initially they didn't do any antibody testing with her because she wasn't seeing any fluctuations at that point and her doc said she'd lost so much thyroid function at that point that it was possible that there may no longer be any antibody markers present (i.e. it had killed so much of her thyroid at that point). She just got hers tested after I was diagnosed for kicks. She still did have antibody markers so it was officially Hashi's but they wouldn't have even bothered testing the antibodies at her age without the fluctuations (and many docs don't know to test for antibodies -- they just focus on TSH and occasionally Free T3 and Free T4). My understanding is that Hashi's is responsible for something like 70% of hypo cases.

    So, it's possible that others in your family that are overt hypo were originally Hashi's and they either didn't test for antibodies or that the thyroid function was so far gone at that point that there wasn't much autoimmune response anymore due to destruction of the the thyroid over the years.
  • allergictodiets
    allergictodiets Posts: 233 Member
    However, it is possible to still see inflammation without these two antibody markers through a scan, though this is far less common (something like less than 10% of Hashi's diagnoses -- the person's thyroid is still having an autoimmune response but just to other specific proteins than the ones associated with TPO and Tg tests).
    I'm one of the unfortunate ones.. I had been medicated for over three years with pills containing iodine before a new endo properly "read" a scan.
    So, with Hashi's, it can be difficult to medicate properly due to these fluctuations caused by the autoimmune response.
    My current endo says that you could imagine it as a downward-slopping sinusoid - you may get ups and downs but ultimately your thyroid is going to be destroyed. It is so frustrating though - last winter I had a low ( + 3kg within a month ) and then I experienced
    an up in spring ( -3kg within a month ) without changing my eating patterns.
    Some people find that they do better eliminating certain foods from their diets because they spark an autoimmune response -- gluten/grains is a common one, so is lactose and casein from dairy. Other people don't have any food allergies/sensitivities.
    I find I feel better when I reduce gluten and lactose even though I am not officially allergic to them ( i.e. blood tests show nothing ).
    My doc -- who is a thyroid specialist -- says that his Hashi's patients tend to fare better on the naturals and that's what he recommends they use, but the choice is up to us.
    Here in Germany the doctors seem to be strictly against the naturals because they think they can't get an accurate dose with them.

  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Here in Germany the doctors seem to be strictly against the naturals because they think they can't get an accurate dose with them.

    I think that used to be the case in times past, but it's my understanding with recent technology that's no longer an issue. There may be a little difference, but it's negligible -- not enough to matter in any sort of substantive way, and even some of the biggest proponents of synthetics only in the US have finally admitted that. So, it's my understanding that it's a totally bogus thing now.

  • shadesofidaho
    shadesofidaho Posts: 485 Member
    Funny no one ever tested me for Hashi. My PCP now is so against testing . So I do not know which one I have. I do have psoriasis which is also autoimmune. With out testing I will not know for sure.

    I do so much better on the naturals. Well I did on Armour and now the NP Which is a natural. My skin is softer, but it that my WOE? I do not have nearly the all over pain in my joints. I do not have the energy I think I should have but I am no slouch for an old fat lady. I just finished putting up 150 foot of fence by myself=post holes driving posts making gates. It took me half of forever but I got it done. more fence to do but I am now out of materials=$$$

    The old Armour was pulled off the market because it was found it did not meat consistency standards. Later it was put back on the market but I have been told it is not as good to us as the old brand was. I think this happening caused some doctors to continue the mind set it is not good to use the porcine brands of thyroid. Or the thyroids made from porcine.
  • FoxyMoxi
    FoxyMoxi Posts: 8 Member
    Hashimotos is an autoimmune issue, so try and investigate things that trigger inflammation and cut those out. I do best on natural thyroid and paleo diet (I do still have dairy some, but shouldn't, it bothers me lol). I was dx in Sept, trying to get med figured out.
  • shadesofidaho
    shadesofidaho Posts: 485 Member
    I will ask the PCP about it. I do not know why he is so reluctant for testing. I am afraid he is a test book doctor and I might need an endo for the help I need.
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    Many times I have seen people saying their GP only tests..... or wont test.... Somewhere along the line they the GP got the idea, hypothyroid issues are easy to treat. This probably comes from there only being one readily trumpeted treatment regime no matter what your hypothyroid cause is, synthetic levo and it must be simple to get the dose right. The directions in UK and Europe for treatment is synthetic alone. Sometimes someone gets through to a knowledgeable medic who will treat outside the guidelines as a named person but generally ignorance is rife.

    Stop the thyroid Madness, web considers most of the populations who are diagnosed are under treated. There are an almost equal number who's health issues are not taken seriously.
  • shadesofidaho
    shadesofidaho Posts: 485 Member
    Fuzzipeg, This is why I have gone as far as I can holistic. But with thyroid a person needs the meds. DOH. I laugh because my PCP is more concerned about my blood pressure which when I am home actually borders on low 109/68 / What he does not get is in his office it is with GREAT RESTRAINT I am not taking him down and spanking him that is making my BP go so high when he keeps explaining to me about TSH. I am so frustrated. Well we will see how Wednesday goes. I think I need to ask for a specialist but then I could get just another one like him. He specializes in old people problems. He is maybe 30 and overweight I might say. Preaching to me how obese I am. Well yes I went with out needed thyroid for about 7 or 8 years. I forget now. Let me tell you the weight goes on your body in a very weird way. It takes a long time to lose it too. I have only been back on the thyroid since August and down now 23 pounds. I would say mostly because I am able to move more because I do not have the pain. I am 65 and it is harder to lose weight as you get older. I am actually feeling pretty good. I do not want him to think I am just a TSH number to meet. My TSH has always run low and I have the paperwork to prove it from 40 years ago.

    thank you for your comments. Will let you al know how this turns out. He WILL see good results from changing to the NP. I just wish my hair would quit falling out. I am starting to look like an old bald lady.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    I will ask the PCP about it. I do not know why he is so reluctant for testing. I am afraid he is a test book doctor and I might need an endo for the help I need.

    Even endos aren't sure bets. Many endos are very old school and only look at TSH (or focus very heavily on diabetes and don't do much thyroid). Really look for someone that specializes in thyroid and/or metabolic disorders. Sometimes these are endos, sometimes they are functional or integrative MDs.

  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Fuzzipeg, This is why I have gone as far as I can holistic. But with thyroid a person needs the meds. DOH. I laugh because my PCP is more concerned about my blood pressure which when I am home actually borders on low 109/68 / What he does not get is in his office it is with GREAT RESTRAINT I am not taking him down and spanking him that is making my BP go so high when he keeps explaining to me about TSH. I am so frustrated. Well we will see how Wednesday goes. I think I need to ask for a specialist but then I could get just another one like him. He specializes in old people problems. He is maybe 30 and overweight I might say. Preaching to me how obese I am. Well yes I went with out needed thyroid for about 7 or 8 years. I forget now. Let me tell you the weight goes on your body in a very weird way. It takes a long time to lose it too. I have only been back on the thyroid since August and down now 23 pounds. I would say mostly because I am able to move more because I do not have the pain. I am 65 and it is harder to lose weight as you get older. I am actually feeling pretty good. I do not want him to think I am just a TSH number to meet. My TSH has always run low and I have the paperwork to prove it from 40 years ago.

    thank you for your comments. Will let you al know how this turns out. He WILL see good results from changing to the NP. I just wish my hair would quit falling out. I am starting to look like an old bald lady.

    To help with the weight, you might consider looking into lifting heavy -- like barbell training. I know it can be intimidating at first, but it's a great way to keep your muscle while losing weight. Plus, when the weight loss stalls, it's also encouraging to see your lifts go up -- if you can't get lighter one week, it's nice to know you're getting stronger.

    I have a few friends with hashis (in addition to myself) and a heavy lifting regime with lots of walking/hiking seems to have worked best for us. I think it's in part because we're already prone to inflammation so lots of intense cardio seems to work against us in particular (of course, you've got to be eating in a deficit too).

    I went through the ringer with docs too (5 docs total, 2 endos, 3 GPs) and until I finally shelled out the dough for a true thyroid specialist, it was very difficult.

  • shadesofidaho
    shadesofidaho Posts: 485 Member
    I can do some light weights. No heavy lifting, which I do anyway just living and then I pay for it. I forget the names but I have issues in my lower back with numbness in my legs and sciatica pain. I was badly injured in high school. Horse accident. I do some resistance band type strength training. It is called Cable Flex. Seems to be ok for me as long as I do not lean over and pull. That is when the problem starts. I can only do the straight up lifts and I think it mostly works my arms and abdomen. Even with my back brace on leaning over to lift gives me troubles. It really is the only thing I try not to do. I am a hard worker though and strong arm and leg muscles.
  • allergictodiets
    allergictodiets Posts: 233 Member
    I think that used to be the case in times past, but it's my understanding with recent technology that's no longer an issue. There may be a little difference, but it's negligible -- not enough to matter in any sort of substantive way, and even some of the biggest proponents of synthetics only in the US have finally admitted that. So, it's my understanding that it's a totally bogus thing now.
    Maybe I will try talking to my Endo again. I have to be careful though not to make her feel that I am questioning her expertise because she is way better than the other two endos I had had so far. She takes FT3 and FT4 into consideration, not only TSH. She is willing to test after every dosage change - well she is willing to adjust dosage out of her own initiative, even if I am still "within range". I know all of this should be part of a standard treatment but since it is not I am happy to praise her.

  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    edited March 2015
    Allergictodiets. Sounds like you've found a potential gem. Hold on to her. Or possibly clone her, please
  • chunt87
    chunt87 Posts: 161 Member
    I get a thyroid scan in a few weeks. I have been on the ndt for a little over a week now and have not noticed too much difference yet except for 2 things. When I was put on the synthroid about a year and a half ago I acquired a strange rash from my right wrist to my bicep on my inner arm, this is going away. I have logged more steps in the past few days and my legs have felt better at night, but this was only the past 2 days. I probably wont know if its better or not for a while. I wake up better
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    hi I just wanted to point something out. Hashimoto's is not the only thyroid disease with antibodies. So is Grave's. Discovered this the hard way after my son had been extremely ill for 10-12 mos. He was vomiting & pooping blood & dropped 55lbs in that time. (He's 5'10 & went down to 132lbs). All Drs. tested him for gastro stuff until finally overnight he developed huge goitre. Was hospitalized for anaphylactic allergic reaction at that time & Dr on duty noticed the lump. Within 2 weeks he saw endo & surgeon & 4 mos later had thyroid removed. With the thyroid gone the specialists both assured me the "antibody toxicity" is gone. So no more antibodies, but he's now on 150 synthroid with 6 wk blood tests to monitor his levels. I have Hashimoto's & never crossed my mind his health issues were thyroid related.
    My Dr always tests T3, T4, & TSH when she does my blood work, but getting the antibody test was something I had difficulty getting anybody to do. Just wasn't a common test 15 yrs ago. I get blood work done every 3 mos & after 15 yrs we're still fiddling with my meds. Hoping this new LCHF plan will have results, health & weight wise.
  • chunt87
    chunt87 Posts: 161 Member
    Update: doing much better on the NDT. I had my scan and my thyroid is completely dead so it doesnt have to be removed, its just inert. Kate, Graves is a very scary disease, I have a friend who needed her thyroid removed from it as well.

    I have been following a nutrition plan with balanced macros religiously for the last 2 years and am thinking of trying LCHF, please let me know how you do on it.
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    @chunt87 so were they able to determine if antibodies are gone now? Both my Dr and specialist were unable to answer that for me (once the Hashimoto's kills it). The surgeon said in my son's case they were, but will Graves & Hashimoto's be different? So far it's only been a week on the LCHF and I'm still figuring it out as I go along. Had complete blood work done beginning of April ( before I had even thought of trying this) so am going to ask for another work up 1 month in just to compare results. Might be interesting.
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Be careful with the LCHF for those of us with thyroid issues. There is some information out there that it may not be a good choice for those with hypothyroidism or adrenal issues because of the impact it has on T3 levels, insulin and cortisol. Of course, it's not definitive, but if you find your hypo symptoms getting worse, that may be the reason why.
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    Thanks @lindsey1979. I'm definitely doing follow up blood work after 1mo of this. Hopefully will have lost at least a little weight by then, and not mucked up any of my thyroid levels.
  • chunt87
    chunt87 Posts: 161 Member
    Well I read LCHF as low carb high fiber, so I am just going to try to make sure alot of my carbs come from fiber well after my dosages for absorption reasons. I still have antibodies but when they did the ultrasound the whole thing is dead.
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    @chunt87 so what do they do now once the thyroid is dead? Just swim around? Look for something else to attack? How do we get rid of them?
  • lindsey1979
    lindsey1979 Posts: 2,395 Member
    Once you have antibodies, you generally don't get rid of them. After a very long time of not having the stimulant present, antibodie will slowly dwindle in numbers -- but if you're exposed again to the stimulant, then the immune system kicks into gear again. With thyroid, sometimes the antibodies are to the tissue itself, but oftentimes, there are also antibodies to various proteins in the pathway (Tg and TPO are the most common thyroid antibodies, but not the only ones). I believe Tg is kept exclusively in the thyroid gland, but I think TPO exists outside of it as well (primarily in thyroid, but not exclusively). So, even if your thyroid is gone, if you have the type of antibodies that react to some protein in the pathway, you'll still have those antibodies and a reaction.

    The end result is that docs really don't know too much about autoimmune disorders and why the body starts attacking its own tissues/proteins. Some they know more about, but many they don't know that much -- at best, they can see how they react to certain treatments, but they're still very, very far away from getting the body to actually stop attacking itself.
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    I know in my son's case (Graves) the blood work 6 wks after his total thyroidectomy showed the antibodies had dramatically decreased. Can't remember numbers now, but once again both surgeon & specialist assured us that any "antibody toxicity" was gone. Only time will tell I guess. But, convincing a 24 yr old male who can't believe how good he's feeling, to continue getting labs done is a struggle. That whole I'm immortal young men have, is extremely annoying!
    @chunt87 we have to play around with so much with Hashimoto's (meds, diet, activity levels, etc.) that I think once we find something that seems to work, stick with it. That's the bad thing about Hashimoto's, no one thing for everyone.
    This whole autoimmune thing is a pain in the rear. And usually once you have one disorder more pop up. Aren't we lucky?
  • chunt87
    chunt87 Posts: 161 Member
    lindsey knows alot about this stuff. I think that makes sense with the antibodies, I also think theres alot of gray area in endocrinology, I cant think of a better explanation as to why I am doing so much better on the naturethroid versus the synthroid.
  • Sk8Kate
    Sk8Kate Posts: 405 Member
    I just wish I could find a Dr who knows half as much.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
    chunt87 wrote: »
    I cant think of a better explanation as to why I am doing so much better on the naturethroid versus the synthroid.

    Synthroid (levothyroxine) is synthetic T4. The human body should be able to convert T4 to T3, so a lot of American doctors refuse to prescribe anything else. My T3 was super low, but it took me a year & a half to persuade my endocrinologist to add Cytomel (liothyronine), which is synthetic T3.

    Natural thyroid (like Armour) is desiccated pig (or pig + cow) thyroid glands, which contain T4, T3, T2, and T1. (I have no idea what those last two do, but some people respond really well to natural thyroid.)

    Bottom line: it takes a whole lot of trial & error to find what works for you.
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    Some research suggests t1/t2's may enable residual t hormone to be recycled or breakdown pre elimination.
This discussion has been closed.