question about TPO. I have an enlarged fatty liver and have been dealing with it since May 2020. I underwent radioiodine in August 2020 after my dr thought I just had hyperthyroidism but it turns out I actually have hashimotos and wasn’t discovered until October when I asked for a TPO reading which came back at 270. At that time my thyroid just started to die from the radiation and my liver enzymes and everything flew out of wack. I’m currently being treated with levo 100mcg and liothyroinine 5mcg once or twice a day as needed.
I got over most of the severe hypothyroid symptoms after starting the treatment and felt kind of ok for a month. My levels on December 5th were
T4:1.40 normal range: .82-1.77
TSH:5.130 normal range: .450-4.500 ( improvement as the month before it was 45)
T3:3.0 normal range: 2.0-4.4
TPO: 485 normal range: 0-35
Ast: 19 normal range 0-32 (last month 46)
Alt:15 normal range 0-32 ( last month 60)
Albumin: 5.1 normal range 3.9-5.0
Alkaline phosphate 87 normal range 39-117 ( last month 150)
Bilirubin: 1.3 normal range: 0-1.2 ( last month 1.9)
So for the most part I am in range compared to November. My TPO however is super high and idk what that means to my hashimotos. For the last two weeks I’ve been experiencing headaches and I never suffer from headaches and I’ve also been suffering from very bad flu like muscle and joint leg pains. It gets so bad I can’t get out of bed sometimes and I try to be careful with pain meds due to my liver but I have had to take some Tylenol some days but always keep it at or below 2,000mg a day.
Since all this now my URQ pain is back making me believe my liver is swelling again and pushing in things as it’s almost 21cm which is very large and has a Riedel’s lobe. I feel like absolute shit and non of my drs can help me. My endocrinologist has been on vacation and my rheumatologist won’t say anything about my thyroid cuz that’s the endocrinologist job. I’m getting a biopsy on the 11th that will hopefully give me some answers but I’m in so much pain and can hardly live like a normal person and I’m so tired of drs not listening to me or trying or giving me any solid information about my condition. I feel like I should go to an er but I know they will just tell me to follow up with the same drs that get me no where. Sometimes I feel like I’m just supposed to waste away at this point as everyone is tired of me feeling like shit all the time and I am too. Can my TPO being this high be why I feel so bad even though my other levels are in range? And my vitamin levels are also in range so it’s not the vitamins.
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Amethyst91
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No, it has nothing to do with your antibodies. They are just an indication that you have Hashi's. Their job is to clean up after an immune system attack on the thyroid, which is why they fluctuate. But, they don't attack anything themselves, and don't affect how you feel.
One thing does worry me about what you've said, though:
I’m currently being treated with levo 100mcg and liothyroinine 5mcg once or twice a day as needed.
That is not how you dose liothyronine. You cannot do that and expect good results. T3 needs to be a consistant dose every single day so that our body know it can rely on a steady supply. It's not like taking aspirin. Either your take 5 mcg or your take 10 mcg, but you cannot flop around like that if you want to get well.
That’s a good way of putting it. My dr told me as needed and it just acted like coffee for my thyroid to give an extra boots. I’ll admit in the last two weeks I hadn’t been taking the second dose like I had been and my body started getting out of wack around then. I do think I need the t3 do my dr did say I could try amor brand I think which she said had the t3 in it so maybe doing it that way will be a better more consistent dose for me.
I think your doctor is insane. Taking T3 has no effect on your actual thyroid. It is thyroid hormone replacement, replacing the hormones your thyroid can no-longer make enough of. It doesn't 'boost the thyroid' or do anything else to it.
my dr did say I could try amor brand
Armour is not T3, it is NDT - Natural Dessicated Thyroid - made from pig thyroid. It contains T4 and T3. But not in the same ratio as you've been taking. 1 grain (60 mg) of Armour contains about 68 mcg T4 and 9 mcg T3. And it's rather expensive - will you be paying for it? Or will you get it prescribed?
I can't see how it will be a more consistant dose for you, though. And, it doesn't suit everyone. Why not just continue with 10 mcg T3, either split into two doses, or all at the same time?
I’m new to the thyroid game so I’m just taking guesses based on what I’ve heard from drs. If levo is better then I’ll stick with that. The complete murder of my thyroid wasn’t what I was expecting especially learning that it wasn’t even the right treatment so I’m all messed up here just trying to function like a normal 29 yr old again.
Do you think the inconsistently of my doses could be why I’m so miserable right now? The last 7 months have just been a lot trying to understand two conditions that completely change the way you live.
RAI is a slow burn and it may take many months or even years for the RAI to fully burn out and totally destroy your thyroid gland.
Primary hypothyroidism caused by RAI is more difficult to treat as everybody's reaction to this toxic substance is different and the dose of RAI not as " scientific " as you might think :
No thyroid hormone replacement works well if vitamins and minerals are not maintained at optimal levels -
RAI can trash vitamins and minerals :
You need to keep track of ferritin, folate, B12 and vitamin D and maintain these at optimal levels in the ranges.
A fully functioning working thyroid would be supporting you with trace elements of T1.T2. and calcitonin plus a measurable amount of T3 at around 10 mcg daily plus a measurable amount of T4 at around 100 mcg daily.
Armour is Natural Desiccated Thyroid which contains all the same known thyroid hormones as a humans gland and is pig thyroid dried and ground down into tablets referred to as grains :
My dr just kept telling me hypothyroidism was so much easier to control. I was so convinced that my hyperthyroidism was the bad one because of the constant palpitations and what not. I miss my old thyroid 😞
HOWEVER - you are much better placed than people in the UK who routinely only get prescribed T4 and have no thyroid hormone replacement choice offered to them.
I now take NDT which I have to source and medicate myself - " surfing the net " looking at importing medications from diverse and sometime " shady ' places just to stay alive ???
Yea I have heard the t3 is hard to get and I just can’t understand why they do that to people. Also I realize they hide a lot from patients. I ended up with the two most misunderstood conditions at once and if I if there’s a way out or up from here. Liver and thyroid problems are terrible.
Yes, it's terrible, isn't it that they don't know the difference between Graves and Hashi's! But, I'm afraid, it happens all the time. Do you know if you have any thyroid function left? I think, if it were me, I would be contemplating a formal complaint, because all they had to do was do the right blood tests, and it sounds like they didn't.
It's not a question of levo being better than anything else, it's a question of what suits you as an individual. If you're feeling ok on levo, then probably best to stick to it - for the time being, anyway. But, I really would take a consistant dose of T3 if I were you. T3 is the active thyroid hormone. T4 is the storage hormone that has to be converted to T3 before it does anything. As you've been lucky enough to be prescribed T3, I certainly would stick to that, if I were you. Just take the same dose every day. Looking at your lab results, I do think you'd be better off taking the 10, rather than the 5 mcg dose, because your TSH is much too high, and your FT3 is on the low side. And, it's low T3 that causes symptoms.
It's a lot to learn, I know. But, keep reading on here, and you'll soon pick it up. And, if you have any questions, there will always be someone here that can answer them.
Thank you! It really helps a lot to learn from others on here as drs are not the best at giving information. I feel like I just pay them to read me my lab results that I already read and googled lol. I am pretty upset about the treatment especially since I did ask for the tpo test before the treatment but there not much I can do now. I do think she realizes how bad she messed up especially because my thyroid plummeted after. I don’t think I have much left as I said before the levo I was so out of wack that my Tsh was 30.800 then 45.000. I don’t remember the other ones but they were bad too. I remember I was so bad I almost couldn’t move my arms and I developed carpal tunnel and would instantly crash when I got home from work. My eyebrows even lost color and are completely white now.
And your doctor concluded that you were hyper with a TSH of 45??? I would definitely make a formal complaint! She should not be allowed to treat thyroid patients because she know nothing about it!
Well that was after the radiation before medicine. Before all that it would slip pretty hyper and was going hyper and causing a lot of heart palpitations and I almost had thyrotoxicosis episode which was pretty scary. My history all up the treatment always suggested hyperthyroidism and I never took medication for it cuz it didn’t help the symptoms.
Starting to realize that. I just liked her so much because instead of just nodding her head and kicking me out of the office I thought she took time to listen to me and what I was going through but pretty much just made whatever was wrong with me worse. Idk why radioiodine is even recommended knowing what I’ve been learning in the last few months.
I can't comment on that, because I've never had it. But, I don't think I'd want it, either!
I don't know that your doctor made everything worse. It's just that she hasn't yet managed to make it better. As you have Hashi's, your thyroid was going to be totally destroyed, anyway, in time. But, what's important now is to get the thyroid hormone replacement right. So, you need to stay on the 100 mcg levo and 10 mcg T3 for six weeks, and then retests, and see how you feel, and adjust from there. But, no more switching around with the T3 dose.
No, it has nothing to do with your antibodies. They are just an indication that you have Hashi's. Their job is to clean up after an immune system attack on the thyroid, which is why they fluctuate. But, they don't attack anything themselves, and don't affect how you feel.
I agree. It is also reported that TPO antibodies can rise after radioiodine treatment - and they can remain high for a long time, at least a year.
This paper is about multinodular goitre, but I think this will be the same regardless the cause of hyperthyroidism - if radioiodine is used.
I can see clearly you have had a difficult journey so far. But the TPO antibodies are not, in themselves, important.
You appear to be under-dosed - though less obvious whether that is because your prescribed dose is too low or you are not taking it consistently. (Sorry, I am not meaning to blame you. If a doctor had carefully explained that most people need to be as consistent as possible, you might well have done so. I blame the doctor.)
When were vitamin D, folate, ferritin and B12 last tested
As you have Hashimoto’s Are you on strictly gluten free diet, frequently helps or is absolutely essential
Recommend you get thyroid levels retested 6-8 weeks after taking constant unchanging dose levothyroxine and T3
Splitting T3 into 2 x 5mcg at roughly 12 hour intervals
thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last 2.5mcg of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
I try not to take too many vitamins due to liver issues but I regularly take vitamin D 3 pills a day and 1 vitamin E. Due to covid scare I started taking vitamin c ( think it might be causing some issues as calcium and iron is slightly high),and zinc. My ferritin was good last i checked 2 months ago, all other vitamins are in range except D is 31-35 even with the amount of pills I take daily. I do not fast from thyroid meds when I get bloods because I usually get bloods late afternoon. I do fast from eating though. So far in all my testing only the thyroid levels, liver enzymes (sometimes), and D has been off. My iron levels just seem to be at the upper limits and my calcium as well.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If serum B12 is under 500, or active B12 under 70 then perhaps look at also taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
As i understand it , a certain percentage of Grave patients do also have raised TPOab (Thyroid Peroxidase antibodies), and i'm not certain that this definitely means that they also have hashimoto's.
The test for Graves disease is TRab (Thyroid Stimulating Hormone Receptor antibodies)
do you know if they tested this to confirm Graves before they gave you RAI ?
Her is a link that explains how the various types of antibodies relate to thyroid diseases , and you'll see that they cross over quite a bit;
I don't know , but i would wonder if your now high TPOab are actually a result of the RAI destroying your thyroid, since that is what they show ... TPOab are 'clean up' labels that attach to bits of thyroid protein that have ended up in the bloodstream.
In Hashimoto's this happens due to the autoimmune system attacking and destroying a bit of the thyroid gland, but might that also be what normally happens after RAI has been given?
I think you should ask this question, and find out what TPOab levels normally do in response to RAI , which might be hard to find out , because they probably don't measure them very often in Graves patients.
I have thought of that too. I do wish I had something to go off of before the radiation in slot if things. Either way this radiation is wrecking my body while my dad had the same done a few months before and has been really ok through all of his changes.
if without a goitre it's generally 1 of 2 thyroid autoimmune diseases which BOTH start off with a " hyper " phase BUT not both are treated with RAI and neither is treated within months of diagnosis.
Diagnosis is through a blood test and identifying which antibodies are over range.
TSI ( thyroid stimulating ) or TR ab ( thyroid blocking ) are the unique antibodies associated with Graves Disease.
Patients are prescribed anti thyroid drugs, like Carbimazole, for around 18 months to block their own production of T3 and T4 levels as this disease is seen as life threatening if not treated :
Did this ever happen way before the RAI ablation.
If NOT with Graves antibodies the other autoimmune thyroid disease is Hashimoto's and there is no medication as the " hyper " phase you may have experienced in the beginning was transient and your levels of T3 and T4 would not have been so high as in Graves and would have come back down into range by themselves.
Hi. I’m really sorry you feel like shit. In my experience of 5 years with a young man, my son, in my experience be the squeaky wheel and keep turning up to the ED dept at the hospital. I appreciate hospital may not be the place to go right now with Covid but you have to go back to dr and ED and do it again and again and again. This was my experience. You have to basically be a pain in the arse so much so they want to see you to get you out the door. 6 years it took my son to get diagnosed with nerve damage. I say my son but it was me who did all the pushing. Don’t stop. Pushing on is so hard but giving up means you become invisible in the system. I’m really sorry this is happening to you.
What does nerve damage feel like ? Since the day after Christmas my legs have been awful. Last night I felt like anytime I got into bed they would get prickly and a weird feeling at the feet almost like I needed blood flow and just the rest of my legs hurt so bad the only relief I get is burning hot microwave pads laying in them. This is miserable and I’ve been to urgent care twice already and idk if I should go back to an urgent care or hospital this time .
Hi. My sons pain was pins and needles down his leg and his glute was especially tight. He had pain over his hip girdle and if you touched his hip bone he would hit the roof with pain. The pain never went away. He struggled to sleep and became exercise intolerant. He was 15 when this happened. He is now 21 so just a bit younger than yourself. You are too young for this to be happening and I’m really sorry this is happening to you. We went to ED over and over and over and over and over agin. There was one year where my son gave up. Mentally and physically broken he was at 19 years old. It was 6 years from the accident to diagnosis. It is harder to push on and be the squeaky wheel. It is easiest to give up. When you give up nothing gets done and you are invisible in the system. I always say if you do nothing you get nothing. I don’t think how you are being treated is ok. That’s a personal opinion. Who is around you supporting you? Can you change GP if you feel he/she is not listening and taking action and is there another Endo in the team you could see? I didn’t like my first Endo so I’m seeing another person in the team. Maybe a male because I think a young man like you might have a better connection with a man. I dont want to jump to any conclusions but are you coping psychologically?
Thank you so much for all your replies. I finally found out what my recent spike in issues is. Sad to report that a full 14 days after covid exposure and 8 negative covid tests later I went to an urgent care today that gave me the antibodies test and it was positive. I explained my issues even my new found liver and autoimmune and he immediately told me he’s positive I have covid and it’s triggering an autoimmune attack. He gave me the blood test which tests for the antibodies and it was very strong indicating that I’ve had the virus for at least 10 days and the current active test was weak showing I’m hopefully on my out of being infectious and or had a very small viral load especially after so many negatives. He told me I’m lucky as my symptoms have been mild but I might have lingering symptoms or problems due to covid. I work retail but have been very very careful about this virus. Unfortunately retail places especially during the holidays puts stress on everyone and ppl prey they just have a cold so they do inconvenience their bosses. Well due to this attitude at work ppl don’t want to call off and that’s how I got it Be careful and take any symptom that doesn’t seem right seriously. Because my symptoms were so mild and my tests were negative my family and friends thought I was crazy and even told me I need therapy. Eventually I started ignoring my symptoms but today was enough and I honestly thought nerve issues from my thyroid. The dr told me my symptoms are very common in mild covid patients. This virus is really the last thing I needed but at least it’s mild and hopefully stays that way.
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Be careful and take any symptom that doesn’t seem right seriously. Because my symptoms were so mild and my tests were negative my family and friends thought I was crazy and even told me I need therapy. Eventually I started ignoring my symptoms but today was enough and I honestly thought nerve issues from my thyroid. The dr told me my symptoms are very common in mild covid patients. This virus is really the last thing I needed but at least it’s mild and hopefully stays that way.
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