TPO Antibodies/Thyroid Antibodies/ Hashimotos

Type 1 and LADA
#1

Hello Everyone,

I finally had Thyroid antibodies tested and these were the results:

tpo= 49 range of 0-9
thyroglobulin antibody= 3.9 range is 0-4
TSH = 2.210 range is .270- 4.2
FT4 = 1.15 range is .93-1.7

I was told at a thyroid site that the antibody suggests hypothyroid and Hashimotos however a thyroid expert I contacted said due to the other values it isn’t that yet but it could happen and there’s no way to predict it or stop it. He said also I’m at risk for grave’s with family history. I’m not sure what to think with all of my symptoms but I’m going to get a second opinion for sure. I just wonder what tests to do?

A moderator at the thyroid said my tsh is already showing signs of thyroid struggling above 2 and T4free is low, although it doesn’t seem to be too low obviously. She also had palpitations which her doctor kept saying was unrelated until her thyroid blood work finally went totally out of wack.

My gp is doing parathyroid hormone, ionized calcium and vitamin d25,( my calcium was high). I was told at a thyroid site to do these aso: b12, folate, ferritin- another site suggested that too.

Can anyone with Hashimotos tell me their experiences?

#2

In 2010 I had thyroiditis that caused a swing from hyperthyroid to hypothyroid, although antibody tests were in range. I was treated because I had a low uptake scan and the radiologist told me that it was characteristic of Hashimotos. So current diagnosis is hypothyroidism NOS or cause unknown. I found that I feel best with the ft4 in mid range and ft3 in the 3rd quartile. My TSH was .1 with thyroiditis then went to 3 two months later and was low normal .4 to .9 before the thyroiditis, but I suspect I had subclincal hypothyroidism before (although TSH usually matched the low normal FT4). It was hard to find someone that would treat me based on FT4 and FT3 levels and not the TSH. My TSH and FT4 eventually settled into a low normal range, but I stayed on meds since then.

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#3

Thanks bjm, I remember you telling me about your thyroiditis before but I had forgotten the details. I feel my symptoms have gotten worse and I’m so exhausted… I still get bursts of energy but it’s a struggle to get myself going. what is NOS? At the thyroid site she said she thinks I definitely have hashimotos due to antibodies and eventually it will destroy my thyroid. She had hers removed and takes T3 now and said she feels much better.

I feel daunted with all of this because I pretty much know my endo isn’t going to treat this which means finding another endo and I’m so exhausted and feeling depressed too which is another symptom of thyroid problems. I’m even considering trying a natural immune modulater called digestacure first which seems to have helped lots of people with chrohns, hashimotos, and other autuimmune conditions.

The thing that scares me is that if I do have Hashimotos eventually this will progress and it can cause heart problems and other things without treatment.

Which meds are you on?

#4

NOS means non other specified–cause unknown. I do think it’s autoimmune though because I first had hypoglycemia symptoms in spring of 2006, then started having elevated postmeal readings in 2007. After having two major surgeries in 2009 and 2010 I had the thyroiditis. Afterward my readings started to become even higher. I read somewhere that hypoglycemia can be associate with low thyroid levels, so when I had it corrected my fasting began to rise too. When I had my antibody testing last year from the Mayo clinic the results stated “Values > or =0.03 nmol/L are consistent with susceptibility to autoimmune (type 1) diabetes and related endocrine disorders (thyroiditis and pernicious anemia)” my reading was .05. I was taking Armour Thyroid for a few years but when I started seeing my current endo he was not happy about it and switched me to Synthroid. I think you would feel better on a low dose of meds since your FT4 level is not optimal.

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#5

I wish something could make me feel better… I feel horrible. My endo didn’t even want to test for thyroid antibodies because he says the levels are NORMAL??? tsh and ft4 but last time I said I want antibody testing added on and they did it. I had hypoglycemia too before D diagnosis and palpitations starting around then too. I think Armour is what the forum moderator is on but I’m not sure. I have a friend with Graves disease and she said she doesn’t feel well and can never get her synthroid dose right. Can you PM me? I want to ask you about docs- maybe your doc knows someone in my area who can help me.

#6

Happy day, meee
I was diagnosed with Hashimoto’s in the mid 80’s and put on Synthroid. The Synthroid caused side effects for me so the endo (at the time) took me off and said the Hashi’s wasn’t really that bad “yet” and I could wait to medicate.

Fast forward to 2014 when I got labs to help discover why I had severe muscle cramps. I had a variety of other symptoms as well, but I was focused on the cramping. TSH lab was 86, Free T-4 and Free T-3 were non existent…in other words, the antibodies had successfully eradicated thyroid function :stuck_out_tongue:

I did A LOT of research on autoimmune disease after that, and I recommend you check out Amy Myers, MD…an autoimmune expert as well as Isabella Wentz, a pharmacist who specializes in thyroid disorders.

What I learned is:

  • Get your Free T-3 tested along with your free T-4. T-3 should be at the top of the range.
  • Insist on Natural Desiccated Thyroid if you do medicate. It has the full spectrum of Thyroid hormone–not just T-4 like the synthetic brands do. Only doctors up to date on the current research will prescribe NDT. AMA doctors, and most endos, prefer synthetic. I had to go to a Naturopath to get it.
  • Hashimoto’s and T1 are both linked to the Epstein Barr virus which leaks through permeable gut walls and is close enough to the thyroid cell construction that the body’s antibodies attack both. Gluten as well as several other bacteria and viruses have the same impact.
  • Gluten is #1 source of gut permeability

Current AMA philosophy says that there is nothing that can be done. Functional medicine has a protocol to heal gut permeability and restore immune system balance. In this approach there is hope :wink:

I am happy to answer any questions I can for you.

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#7

Thanks Ahnalira,

So it took a really long time for it to progress to total lack of thyroid function, do you think maybe you were losing function before that but symptoms weren’t that bad? Or did you just ignore the symptoms or live with them? I wonder if a scan would show if my thyroid is shrinking or showing signs of problems. I think even if you treat Hashimotos it will likely progress but then you will stop the other ill effects hopefully with treatment.

I will check out what they have said/written.

I’m kind of wondering what to do… I’m scared to not do anything and scared to treat this also. How did you decide you needed treatment in the beginning? Did you have high levels of antibodies? I’m worried about side effects from both. I have been following a gluten free diet but it doesn’t seem to be helping much although maybe I would feel worse if I weren’t. I have decided for various reasons that diet is important but it isn’t everything. Gluten free to do strictly is difficult but nothing that I eat, as far as I know, has any in it although there can be hidden gluten in some foods, I have always found it very confusing- for instance why are some oats gluten free and others not and so on? I don’t eat grains anymore but I did eat some challah the other day, my only cheat in over a year. I was using gluten free psyllium husks for bread fiber but they were giving me bad stomach cramps so I stopped them.

I did test positive for a reactivation( not a past exposure) of EB 3-4 months after getting out of the hospital but docs said everyone is positive for exposure to it and it’s meaningless. I know I’ve never had mono and I find it hard to believe this is all just coincidence. And as far as leaky gut is concerned I’m not really sure what that means exactly although many people talk about it and I have read about it a bit too. My dentist was just mentioning that ALL autoimmune disease is caused by “leaky gut”- I find broad statements like that to be not totally believable.

#8

Yes, it did take time. I don’t know exactly how long…though I can track symptoms back to as early as 2000. Just call me a stoic :wink:

It’s true that most of us have EB in our system. The big HOWEVER, though, is that the EBV has to get into our bloodstream via gut permeability aka leaky gut to evoke an autoimmune response. Here are some articles that describe the relationships between autoimmune conditions and leaky gut:

http://www.jillcarnahan.com/2014/07/07/leaky-gut-syndrome-linked-many-autoimmune-diseases/

http://jeffreydachmd.com/wp-content/uploads/2013/03/Leaky-Gut-Autoimmune-Diseases-Allesio-Fasano-Clin-Review-Allergy-Immunology-2011.pdf

#9

Here’s a little more of my experience…
At the same time I discovered my TSH was 86, my antibody levels were greater than 3000 on both counts. By eating gluten free, I brought them down to less than 2000 on the first and less than 1000 on the second…still way too high, right?

I have been healing gut with bone broth, aloe vera, and glutamine as well as using antibiotic and antiviral herbs heal h-pylori and EBV…but I also had Candida overgrowth. When antibodies didn’t come fully down by eating gluten free, I started treating for Candida, and that’s when the tide turned. I also started taking low dose naltrextone aka LDN… I haven’t had antibodies tested since I started treating for candida and LDN, but BOY I feel SO much better!!! Rather, I should say, I feel so much better after I go over the candida die-off :stuck_out_tongue:

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#10

At this point in time I just don’t believe LGS is a true phenomenon- if you think about the digestive process there is no way large food particles and so on (which is what they seem to be claiming) are going to get from the small bowel to the blood stream, if they were it would be a catastrophy. I’m glad that this diet and whatever else you do has helped you so much and that you feel better :relaxed: I have tried a lot of the various diets out there however and none of them prevented what happened. I do believe eliminating foods that seem to affect you, which I’ve done, can help, if only to stop whatever bad symptoms you have from them. Most were eliminated because I simply can’t control my bg 90% of the time when I eat them. That is wonderful your antibody levels came down so much, it would be interesting to see what they are now. Do you know what antibody levels you had when you were first diagnosed and began treatment for Hashimotos?

#11

Did you read the article written by ncbi.nlm,hig.gov? It’s a very reputable, scientific source, and it explains how the biochemistry of the junction points of the gastro-intestinal wall gets compromised, allowing “larger than normal” particles of food as well as viruses and bacteria to get through. I think the key here is “larger than the norm” rather than just “large.” If a molecule isn’t broken down appropriately through digestion before it gets into the bloodstream, it is still very, very small…just larger respective to what it should be. These food particles are more likely, actually, to cause food sensitivities rather than autoimmune conditions. It is the virus and bacterial pathogens–that should not be getting through at all–that are primarily linked to autoimmune conditions.

In any case, if you don’t believe it, you don’t believe it, right? It doesn’t matter what the science says. I am inclined to take nothing at face value and do research. And, if I could go back in time to when I was first diagnosed, I would be actively looking for ways to stop the train in it’s tracks before it turns into what I ultimately had to deal with. My thyroid is functionally dead at this point. The endo told me I the 80’s about LGS, and I didn’t understand what she was talking about and I didn’t research it back then… For me, it’s like climate change–would that we had made inconvenient changes to how we use energy sources 50 years ago. But that’s said and done. Now, we (I) have to deal with the ramifications of not taking action then. That’s my metaphor for the day :wink:

I don’t know what my antibodies were in the 80’s.

#12

Yes I read it but I’m still not convinced about what is going on, it still doesn’t sound plausible to me and I know that tons of scientific articles get published which turn out to be wrong which are eventually corrected/changed and so on or just completely forgotten.

Whenever large groups of diseases/conditions are lumped together with a single cause/cure or even a multi faceted form of treatment such as this one which suggests it will fix all of it without really knowing what is going on for sure it makes me suspicious. That is my opinion of course and if the theory turns out to be correct in some form I will be happy to acknowledge it. I wouldn’t feel too bad if I were you because unless you ate a terrible diet and had real reactions to the foods you ate and so on it may not have played as great role as you think or it may be that it wasn’t really possible to stop the eventual results- I guess there is no way to know.

I really wish also they had chosen a different name than leaky gut :smiley: I just start laughing every time I hear it, lol.

It seems like I’m going to have a hard time getting anyone to treat me before my levels get worse if they do so I will just continue with my gluten free mostly raw veggie diet as is, hope that it helps and keep doing more research for now.

Do you know what your tsh and tf4 t3 were when you were first diagnosed and treated?

#13

My endo at the time only tested TSH–it was high normal with evidence of antibodies…but, at the time, I didn’t even think to get the concrete lab values. I learned to do that later on :wink:

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#14

Do you have any symptoms? Ever gotten an ultrasound/biopsy?

It all began when my sister noticed my goiter one day. I went for a regular D check up and the doctor called saying my TSH was through the roof and that I needed to start thyroxin immediately. Immunoassay showed high titers of anti TPO. Ultrasound showed multiple small nodules (probably due to the TSH). I wasn’t entirely convinced, too young I thought. I didn’t take my thyroxin for over two years -because it’s such a tiresome medication to take, and that’s rich coming from an IDDM- but then I had a change of heart and when I did boy oh boy did I see the difference. I no longer had those nap attacks, my hair was falling in bunches before, I’m not as sluggish as I used to. I wasn’t depressed but I definitely did not enjoy things like I used to. It all made sense now.

It’s like wearing glasses for the first time, you don’t think you need it but when you finally put it on all you’re thinking is how could I have gone on for so long without it?

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#15

Hi Asma,

Yes I have symptoms of thyroid issues, like palpitations, dizziness, fatigue, brain fog. irritability and the others I mentioned above. I don’t have weight gain which seems to be typical of hypothyroidism. For a while I was losing weight after gaining back dka weight loss but I’m eating more and have gained a bit but not like a lot of people with hypothyroidism seem to.

I haven’t had an ultrasound. My thyroid/neck looks normal to me. I’m not sure what to do at this point besides do some of the tests prescribed because I doubt any traditional doctor will treat me if it is Hashimotos and the treatment could be worse than this for all I know.