Hi all, just seen my new doctor and asked about why have i been given three diagnosis for hypothyroid primary, autoimmune hypothyroid and graves. Still not sure but he said maybe the hospital tested for antibodies and it wasn't on the GPs system. Anyway he managed to find my TPO result which was tested in 2015 and said it was in range although there wasn't any ranges for him to give me. The TPO was 314. Not sure what this means or where in the range that falls. He said they can diagnosis autoimmune hypothyroid without the anti tests but that goes against what ive read and learnt from you guys. I have the other codes for antibodies and printouts from all the bloods the hospital has done but they have never tested for them , hence why the endo thought i had graves. Now im wondering has my high dose of levothyroxine caused symptoms relating to graves for the endo to think i may have graves. My endo also wrote a letter to my GPs confirming this. Any ideas what next. I see my endo on the 24th of this month so need advise.
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Angelic69
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Having a result of 314 for TPO antibodies doesn't sound like it is in range to me. I think your doctor was fobbing you off.
I think many doctors just assume that overt hypothyroidism is autoimmune. But then they often just assume that hyperthyroidism is Graves' Disease. They assume an awful lot because it makes their lives easier.
What do you call a high dose of levo? Has your endo seriously diagnosed you with Graves' Disease based on a low TSH caused by a high dose of Levo? (Rhetorical question.) If that is the case then you seriously need to get copies of your GP-instigated blood tests from the last few years including the reference ranges, and you should write to your endo's secretary and ask for copies of all your blood test results, including the reference ranges.
If your condition is a mystery, then, with luck, perhaps we can help to explain it.
Ive had results from endo and they are ok, low tsh in range ft3/ ft4 much the same for all of them but none for antibodies. My levothyroxine was at 125mcg which i was told the max dose for my weight and at a dose which reduced my constipation. Any idea what the range is for TPO, am i high. Wont they need to supress immune response at that range.
There is no such thing as a maximum dose of Levo based on weight. You might absorb it poorly, you might be poor at converting T4 to T3, and need a high dose of Levo for your body to convert enough T4 to enough T3. There are all sorts of problems that could arise that require you to be on higher doses. Assuming you still have a thyroid, there is no way of knowing how much of your thyroid is still functioning, for a start.
Doctors don't treat thyroid antibodies. They claim there is no treatment that will reduce them and often state that "everybody has them", and they are not important. However, patients on forums have discovered that going gluten-free will reduce thyroid antibodies in many people, some people may have to eliminate dairy to reduce antibodies, and there are various other dietary interventions that have helped at least some people e.g. low histamine, eliminating nightshades, low fodmap. We all have to do our own trials to see what helps. Personally, I only ever tried going gluten-free which helped me a lot. I've never tried anything else.
If conversion of T4 was an issue wouldn't they just add T3 my eyes really do suffer with 125mcg of T4 only. i haven't had my thyroid removed but not sure if it works at all now anyway of checking.
My dentist said that i have a rotten tooth underneath a crown which used to cause abscesses all the time. He didn't want to take it out himself as he said the roots were twisted and referred me to another whom also said to leave it be if i had no pain which i don't. My original dentist said that it would keep releasing poison into my body but he could not keep giving me antibiotics to treat it. Now bearing in mind root causes which im just trying to confirm would this be a root cause. Im taking a daily histamine and only eating whole foods, im only eating gluten free bread and just introduced flaxseed meal which has already done wonders for my digestive tract. Not sure about the gluten range available in these parts and try to eat only free-range or organic meats. Ive cut out broccoli and potatoes and all snack foods. Ive increases my polyphenols and added spirulina and a lot of the brain fog has gone and my constipation is none existent now thank god. Oh i buy goats milk and only have a little butter in the morning on my toast.
If conversion of T4 was an issue wouldn't they just add T3 my eyes really do suffer with 125mcg of T4 only.
You would think that would be sensible, wouldn't you. But T3 is enormously expensive in the UK so lots of dodgy research has been done to hide the fact that T3 helps people. It has been mostly banned because of cost, but doctors deny that is why they have banned it.
One point to make is that T3 is only astronomically expensive in the UK, it isn't anywhere else.
I was told that i could ask my GP for a private prescription and would pay for it myself so i could feel better but the GP looked at me with horror and declined flatly.
I know the cost has just gone up for T3 from five pounds a month to three hundred pounds per month my friend has it prescribed by her endo. When she went from T4 only to T3 i was impressed as i hadn't seen her for a long time. Its those monopoly super giants that have caused this to happen, its so wrong. If we could pinpoint the underlying cause on our diet and charge these giants for creating the minster of thyroid disease.
humanbeing, ive read that poor conversion arises within the many organs one being the lungs. Would this suggest lung disease as i was a smoker for many years.
Do you weigh 5 stone or something? My sister is much smaller than me but she takes 175 mcg wheareas I was on 125mcg Levothyroxine anything more made me over medicated. I tower over her and weigh a lot more than she does. Surely the dose should relate to obtaining a state of being asymptomatic. They are talking rubbish.
It is easy to feel crushed with hypothyroidism but here we can get to the truth and overturn the falsehoods we are fed by the supposed medical profession. We must try and keep going no matter how hard that feels. We owe it to ourselves to do our utmost to help ourselves have the best life possible
I agree with you 100%, sometimes despite our own personal experiences being contrary to the hype we can alter our mindset to make it fit with the model and never start to feel well.
TPO 314 is positive for autoimmune thyroiditis (Hashimoto's). The highest TPO range I've seen is >160 as positive. Some patients are sero negative (antibodies low or non-existant) but are diagnosed via ultrasound scan.
Graves Disease can be diagnosed if you have thyroid eye disease (TED). If you don't have TED then you need TRab or TSI testing to confirm Graves.
So im over double lowest range, any ideas if there's a top end to that range. Never had any diagnosis for TEDS but did have terrible eyes since taking levothyroxine maybe that's why the endo thought graves so why didn't he reduced the levothyroxine at that point. I have since reduced my sugar intake by loads and eyes have gotten better, not back to normal but improved. Im thinking that maybe the levo created a stress response that increases my blood sugars and insulin hence why ive improved now ive reduced my sugars. Im annoyed and confused as to why ive had to discover this link and that both the GPs and Endocrinologist said nothing or to others just diagnosed TEDs.
If you don't have TED it's hard to see how you can be diagnosed with Graves Disease without TRab and TSI being tested positive.
Were you diagnosed with hyperthyroidism? What were your thyroid results and ranges when you were told you had Graves? Were you taking Levothyroxine at the time?
GP diagnosed autoimmune hypothyroid after my initial blood test and started me on low levels of levothyroxine. My follow up appointment with my regular GP four weeks later went like this. i said the former GP diagnosed auto immune hypothyroidism she said that was incorrect my diagnosis was primary hypothyroidism. First confusion for me. Then when i was doing so badly on levothyroxine, heart issues arose, brain fog, reduced focus and vision massively blurred and myself asking her to prescribe a different medicine as levothyroxine was making me feel really ill she referred me to the endocrinologists department. My GP told me there was no alternative medication for hypothyroidism that she could prescribe and that only the endocrinologist could change my prescription. On my initial visit he took one look at me and said yes you haven't had any, im assuming thyroid hormones, for a long time and my dose was increased again although i wasn't tolerating the dose i was already on. He said he would do some tests and may have to change my meds once he got the results back but after they came back he said no levothyroxine was what he wanted me on. Ive since had print outs of all the tests he has done and only show TSH, FT3, FT4. On the following visit i was seen by his associate who i informed of my impaired quality of life since taking levothyroxine and also told him that i didn't want to take levothyroxine anymore and could he prescribe something else that my body could tolerate. He said levothyroxine was all they had to offer. He went on to say that he thought i had graves disease and would be writing to my GP to inform her regarding this matter and that i didn't want to carry on with the levothyroxine and that he could offer no other solution but to terminate any other appointments for me to visit that department but would be happy to see me again if re referred. What puzzles me is that if he thought i had graves why increase the levothyroxine as i thought that was for hypothyroidism eg underactive thyroid and that graves was for overactive thyroid.
Primary hypothyroidism means thyroid was failing and that TSH was high when you were diagnosed.
Autoimmune hypothyroidism means that your TPO antibodies were high so you have authoimmune thyroiditis (Hashimoto's) which has caused your hypothyroidism.
If endo increased your Levothyroxine dose it was because you were undermedicated on the dose your GP had prescribed.
I've no idea why an endo would suspect Graves Disease and make a diagnosis of Graves without testing antibodies when the patient is taking Levothyroxine as you've said you don't have TED.
I'm afraid to say, some doctors don't seem to know the difference between Grave's and Hashi's. They seem to often get it wrong.
Why have you cut out broccoli? What's wrong with that? And, I'm not convinced spirulina is good for Hashi's people, because it has a high iodine content.
Broccoli has been identified as a possible trigger for leaky gut and triggering autoimmune response in some so trying to illuminate all suspects so i can then reintroduce one at time. Ive cut out seeds and peanuts as they have been identified as culprits too.
Im aware of the iodine content in spirulina but the research ive read hasn't found any links that say you cannot take iodine whilst on levothyroxine as long as you don't take excessive amounts. I take the lowest amount and am watching for signs of interactions but so far im good with the dose im on. It has helped with my digestion issues and ive heard that it can help with inflammation too which i have a fair amount of.
It's not a case of taking iodine with levo, it's about taking iodine with Hashi's. You're already getting extra iodine from your levo - 65 mcg iodine from every 100 mcg levo.
Dose of what? Iodine? Zero. You do not need extra iodine unless you have been tested and found to be deficient. Even if you are deficient, it's not as easy as just taking a pill. Iodine wouldn't help with leaky gut, anyway. Have you tried bone broth?
Do doctors check our iodine before giving Levothyroxine, i didn't know. Im not taking iodine for a leaky gut im taking spirulina as its good for inflammation and increasing red blood cells, lowering Bp, but mainly for inflammation and digestion constipation issues. And yes ive tried bone broth or my version of one and it was terrible, i really felt sick with every spoonful.
Well, I can sympathise with that! Don't think I could drink it, either. But, lots of people on here swear by it.
The trouble with Spirulina, despite it's obvious health benefits, is its high iodine content, so it's as if you are supplementing with iodine. There must be other things you can take for inflammation etc. that don't contain iodine. High doses of vit c, for example, with magnesium. Pro and Prebiotics.
Too much vit c and i turn orange so i only take 100mg daily. and i was taking magnesium too but still had inflammation. My gut feels nice and i feel that ive emptied my bowels properly since ive taken spirulina, Ive recently added flaxseed meal too and its like gut heaven. Im still suffering inflammation in my back and my right side so i haven't found all the triggers. I was reading about the livers role at converting T4 and was wondering if high levels of T4 would cause the liver an issue. Any info regarding this subject would be useful.
Have you tried turmeric (curcuma) for inflammation?
125 mcg T4 is not a high dose, it's quite a low dose, so I wouldn't worry about your liver on that account. I don't think high doses are a problem for livers, anyway, even if you can't convert it well.
And, I wanted to say before, but forgot, just FYI, autoimmune hypo is primary hypo. Primary just means that the problems stems from the thyroid itself. Secondary is when there's a problem with the pituitary, and tertiary is when there's a problem with the hypothalamus.
Yes i do take turmeric twice a day. Im confused with the primary hypothyroidism part. If Hashimotos is due to an immune response wouldn't that be secondary hypothyroidism, just wondering.
Ive found this link that associates hypothyroidism with non alcoholic liver issues. Not sure what its actually saying to me. Have you read this article, ill send the link.
Secondary hypo is to do with the pituitary, a badly functioning pituitary that doesn't produce enough TSH to stimulate the thyroid to make enough thyroid hormone.
With Hashi's, the gland is damaged by the immune system, but it's the gland itself that is ailing, due to the immune system attacks. Therefore, it counts as primary hypo.
No, I hadn't read that article. But, it's quite possible that sometimes hypothyroidism can be caused by liver problems. But, not all thyroid problems are caused by a sick liver. Your hypo is caused by Hashi's. You may or may not have problems with your liver, low T3 can affect the liver, but your hypo is caused by your immune system destroying your gland.
Thanks for clearing that up greygoose. It states that Hashimotos can lead to this condition if the immune response is not addressed, and that the higher the antibodies the greater the risk of the occurrences of non alcohol related liver issues , would i be at risk as my TPO antibodies were 314. Should they be checked at my next Endocrinology appointment.
Linked to, doesn't mean it caused the hypothyroidism. More likely the hypothyroidism caused the liver problem. And, the link is, presumably, to low T3, not high doses of levo.
Are you particularly worried about your liver, then? Why don't you ask your doctor to do some liver tests?
I have had thoughts on the inflammation in my back being associated with the liver for some time, in addition i often notice eye discoloration which made me link the two. I thought id pop my last tests from the endo for you to take a look at for me.
Doesn't matter about the TSH, but the high FT4 and not quite mid-range FT3 are showing that you're not converting very well. Most people need their FT3 up the top end of the range to feel well.
I don't know anything about inflammation in the back being linked to the liver, but the best thing to do is get your liver enzymes checked. Ask your doctor.
Ive noticed as the TSH goes down the FT4 goes up, im understanding correctly that High FT4 means poor conversion. They say conversion occurs in the liver as well as other sites. Would this be a reason to check liver functions.
That is correct, as FT4 goes up, TSH goes down. But, it's not just high FT4 that means poor conversion, it's high FT4 and low FT3.
No, I don't think that's a particular reason to check liver functions. But, seems to me, when you're hypo, liver should be checked as a matter of course.
Would they again only offer advice and or medications for those that were outside range and become silent in those having symptoms but still within range until they too become dependant on reverse medications. Im a little down hearted today forgive me.
If you were under ten, they would probably tell you to go away, there was nothing wrong with you. They don't know anything about symptoms. Sorry if that does nothing to lift your mood, but thyroid treatment in the UK is dire!
That link states that less 100mcg daily was beneficial to Hashi,s. I cannot see any iodine measurements on the spirulina contents panel so not sure how much extra im getting. Ill not replace my spirulina once ive finished this pack and see what happens, if i feel worse ill start taking again. Thanks for the link greygoose.
Can you tell me more about TRab/TSI as not familiar with those as i am tsh. With those levels shouldn't they be giving me something to supress the immune response.
Read my earlier reply re TPO and Hashimoto's. Supplementing 100-200mcg selenium daily and 100% gluten-free diet may help. The last thing you need is your immune system suppressed. That would make you susceptible to infection.
Not sure to be honest. I can have the jab but don’t I rarely get ill now and feel my body is strong enough to cope. I read that in the long run it is better to make one’s own antibodies to flu rather than have a jab. If I was poorly all the time like I was when I was overt I might be tempted to get the jab in the hope it helped. I am not anti vaccinations or anything i had all the ones for the old killers as a child and can remember what polio did to those who missed out and how horribly bullied they were just because they had to wear all those callipers and had such horribly withered limbs.. Many illnesses were fatal then. They say they are all coming back because so few get vaccinated now. It is claimed vaccines hurt no one but I am not sure that is true. I think they probably hurt a lot less than the illnesses they are holding at bay. The one to protect women from cervical cancer is one I think very important and worthwhile.
Many of those that get it have been sexually abused as children and get it as a result of the abuser being promiscuous and infecting them with genital warts which appears to play a role in triggering the cancer. Anything that can stop them developing cancer and sometimes dying of it after such despicable treatment by people who are supposed to be trustworthy adults is a good thing. I know bad flu can also be fatal. It is a difficult one.
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally would have asked GP for coeliac blood test first, but never mind
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