Hi looking for help and advice. I'm getting nowhere with Dr's and specialists and struggling with symptoms. No one can figure out what's wrong with me. Can high thyroid peroxidase antibodies cause any symptoms even though the tsh and t4 are normal. I just feel lost now.
Symptoms are
Chronic debilitating fatigue
Extreme heat/cold intolerance
Extremely cold extremeties
Flu like symptoms and feeling very unwell in general
Very dry brittle hair
Random aches and pains (mainly back pain)
So lethargic and lack of energy
Every week i am in bed feeling very unwell, like i have the flu.
Also when I am very warm and feeling ill my temperature is always normal
2 specialists I saw think some kind of autoimmune disease but another says definitely not. Getting so frustrated now.
Words like high, and normal, are opinions, not blood test results. 😊 If you add your actual results and their reference ranges, folks can comment more accurately and usefully. Meanwhile, it sounds as if you have Hashimoto's thyroiditis, an autoimmune condition which attacks and destroys the thyroid causing hypothyroidism, although not in every case. There can be a time lag between the TPO abs becoming noticeably elevated and thyroid hormone levels falling, depending on the rate of disease progress, but this is all Janet and John common functioning of the disease, and if your 2 specialists don't know this, you perhaps need to run a mile in the opposite direction. So edit your post with the results, and any others you've had recently, so that you can be advised less generally.
Hi i haven't had my antibodies tested by the Dr's since May last year. They were >1000 reference range <9 I did see a private endocrinologist and hashimoto's wasn't mentioned. I am struggling now with the constant changes in temperature and getting nowhere with Dr's. Wouldn't know who else to see now 😔
TPO antibodies can be elevated in Graves' disease too, but not generally at such a high level. A TPO Ab level of >1000 is evidence of Hashimoto's disease. What were your TSH and FT4 results that were "normal".
Most Endocrinologists are diabetes specialists with seemingly only a minimal grasp of thyroid function never mind dysfunction.
Hi the only abnormal bloods were my positive ana and vit d deficiency (25) under 50 is deficient. The endocrinologist ruled out thyroid problems and suspected Lupus which my rheumatologist has also ruled out. His answer was he thinks definitely nothing autoimmune. I saw a dermatologist who thinks it is an autoimmune condition of some sort. In also showed her a pic of a rash on my face and she thought a lupus rash. But that's been dismissed also by my rheumatologist. More bloods taken yesterday but he can't explain my symptoms.
If he believes it is "nothing autoimmune", how does he explain the presence of TPO autoantibodies in excess of 1000?
Here's an excerpt from labstestdonline.org
"Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases.
Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
In general, the presence of thyroid antibodies suggests the presence of an autoimmune thyroid disorder and the higher the level, the more likely that is. Levels of autoantibody that rise over time may be more significant than stable levels as they may indicate an increase in autoimmune disease activity. All of these antibodies, if present in a pregnant woman, can increase the risk of hypothyroidism or hyperthyroidism in the developing baby or newborn."
Hi yes i had read all that before seeing him. He just said that's a marker and I am at risk of developing autoimmune thyroid disease in future but no mention of hashimoto's just now. It was my rheumatologist that dismisses any autoimmune disease. .
Positive ANAs suggests autoimmune disease of some sort - so I don't know why your rheumatologist is so keen to dismiss the idea. Your raised TPO antibodies also point to Hashimotos, which means it's extremely likely you will eventually develop hypothyroidism and require Thyroxine (T4) every day. As others have said, TSH, fT4, and ideally fT3 will give a decent picture of your current thyroid function.
The fact that you have positive Antinuclear Antibodies (ANAs) means it's very likely you have at least one autoimmune condition. High TPO antibodies points to Hashimotos, and having one autoimmune condition makes it more likely to have another (due to a process known as epitope spreading).
In light of this, if I were in your position; I would be pushing for further investigations into autoimmune diseases, see below regarding ANAs.
I am considering getting a 2nd opionion privately again. It's just so costly especially of you still are no further forward. My rheumatologist is very dismissive of everything. I have a sun allergy and chronic reynauds but he dismisses both as being connected to anything. Also he said the positive ana is due to the high thyroid antibodies.
Don't know about the sun allergy... that's an unusual one. Usually related to certain herbs or medications.
Reynauds is rarely connected to anything, it tends to be genetically inherited. I have Reynauds but I've had that since I was little and is inherited from my mother.
Sun allergy and raynaud's can both be symptoms of Lupus. Which was suspected by a private endocrinologist I saw related to the high thyroid antibodies and extreme heat/cold intolerance. I've had raynaud's for only a few years but it's significantly worse now. Just started on medication for it.
Yes. I developed it around the age of 32. Now 36 but in the last 4-5 months it's a lot worse. Fingers swell and become painful and the skin cracks and gets sore. I posted a pic of before I started on medication. If your hands were similar?
Raised thyroid peroxidase antibodies confirm autoimmune thyroid disease aka Hashimoto's. This is where the thyroid is gradually destroyed and will result in hypothyroidism.
As Maisie has suggested, post other results, with reference ranges, and we can help.
For a full picture:
TSH
FT4
FT3
Vit D
B12
Folate
Ferritin
No need for further proof of raised antibodies.
Hashi's information:
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
You should be aware that reducing your antibodies will not reduce your Hashi's. You will still have Hashi's, no matter how low the antibodies go. It's not the antibodies that attack the thyroid, they just come along after the attack to clean up the traces of TPO that have leaked into the blood during the attack.
How many times have you had your TSH and FT4 tested? They may be what the doctors call 'normal' now - although all that means is 'in-range', they cannot possibly know what is 'normal' for you - but that doesn't mean they will stay that way. Levels can fluctuate with Hashi's, but the general trend is down for the FT4/3 as more and more of the thyroid is destroyed and you become more and more hypo. Keep testing!
Hi thanks for the reply. They were last testes in October last year. My tsh was 2.0 and free t4 was 15. My rheumatologist tested again yesterday so will post when I get them. Also as it's the hospital an I able to request the blood results by post? Do you have hashimoto's and if so what are your symptoms?
OK, so you've only had results from one test so far, which doesn't really prove anything, where Hashi's is concerned.
I have no idea how you get results from a hospital in the UK, I live in France.
I do have Hashi's, yes, and have had it so long that my thyroid is now dead. During that time I've had a lot of different symptoms but they've tended to come and go: fatigue, depression, weight-gain, hair-loss, water-retention, digestive issues, soft and flaky nails, heavy painful periods, nutritional deficiencies, constant cough, post-nasal drip, black circles under my eyes, hard skin on elbows and heels, the list goes on and on.
Thanks for the reply. Can i ask how your hashimoto's was diagnosed? Was it abnormal thyroid tests also? And were you offered any mediation? Sorry for all the questions 😊
My case is a bit complicated, because I believe that I have been hypo since I was about 8 years old - I'm now 73 - and no-one thought to test my thyroid until I was 55. And I didn't even know what a thyroid was in all that time, so never suggested any testing.
The diagnosis came about by accident. I had a slipped disc op, and felt really terrible afterwards, and was putting on weight so fast you could practically see it with the naked eye! My GP at the time, had a thing about fat women - he hated them! So, gave me a phone number of a doctor whom he said was a dietician and told me to ring for an appointment. When I range, I was told that that particular doctor had left the practice, would I like an appointment with Dr x? As I had no idea who either of these doctors were, I said yes. And, Dr x turned out to be an endo! lol Crazy! Anyway, she diagnosed me almost immediately after a thorough examination, and did full bloods as a back-up. My TSH was 13, I think, and my TPO antibodies only just over-range, but my Tg antibodies were in the thousands. So, she diagnosed me with Hashi's - well, no, she didn't, actually. She didn't mention antibodies. It was another doctor - an anti-aging doctor - that I saw about five years later, who looked at my records and said I had Hashi's. But it was pretty advanced by then. My thyroid was as small as a pea. This anti-aging doctor took one look at me and said 'Madame, your thyroid is dead and your adrenals are about to follow!'
Sorry to hear it took so long but glad you got help eventually. I feel like I am fluctuating between hypo and hyper. There's never a normal temperature. Just freezing cold or roasting hot. I read that with hashimoto's you can switch between both but no sure how accurate that is.
Yes, you can have both hypo and hyper symptoms at the same time. And, there's a reason for that. The hormone that you take exogenously, is not shared out evenly between the cells. For one thing, when you were short on thyroid hormone, due to hypo, a lot of the receptors on the cells were shut down for the sake of economy. It takes a while for them to be reopened. So, with the hormone that your taking, some cells are getting too much - causing hyper symptoms - some not getting enough - causing hypo symptoms - and some not getting any at all. This is one of the reasons that you need to start thyroid hormones low and increase slowly, to give the body time to get those receptors open again, and prevent those that are already open from getting too much hormone.
This is a brief description of Hashi's, explaining how it works:
Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.
After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course! But, there are things the patient can do for him/herself.
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better, and can possibly reduce the antibodies. Worth a try. But, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.
b) take selenium. This not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Hi thanks for the long post of information. I am currently not on any mediation as my levels are still normal. Although sympomatic (may be due to hashimoto's or something else entirely) They will not medicate at the moment.
Only just seen this reply, two months later, because you didn't click on the blue 'Reply' button under my comment. But, I'll answer, anyway.
There are all sorts of reasons why people have to suffer because their results are in the so-called 'normal' range. But, basically, it comes down to sheer ignorance:
* Doctors don't learn much about thyroid in med school - I believe they have about one afternoon on the whole endocrine system - so you can imagine that they get very little on the actual thyroid.
* They don't learn about symptoms. There are over 300 symptoms of low thyroid - although you don't have to have them all to qualify! Doctors know perhaps one or two out of a restricted list: weight-gain, depression, low blood-pressure, thinning hair, fatigue. That's about it. And not every doctor knows the same symptoms!
* Hypo symptoms are what they call 'non-specific'. That means that each individual symptom could be due to 'something else'. But, it's when you have a whole bunch of these symptoms that a doctors reflex should be to ask himself, 'what is more likely? That my patient has 30 different diseases with one symptom each? Or that she has one disease with 30 symptoms'. However, they didn't learn to think like that in med school, so it more than likely won't occur to them and they will continue to treat each symptom as a separate disease.
* No two hypos will have the same set of symptoms. Plus symptoms of hypo and hyper tend to cross over - something that totally confuses doctors because they don't know about it. There is no hard and fast dividing line between hypo and hyper symptoms. Doctors believe that hypos have low blood pressure and hypers have high BP. That hypos put on weight and hypers lose it. But, you can just as easily have a hyper with low blood pressure who's put on weight, as you can a hypo with high blood pressure who's lost weight. Doctors cannot get their heads round that because a) they haven't been taught about symptoms and b) they haven't been taught to think outside the box.
* The blood tests are unreliable. One thing doctors are taught is to trust blood tests implicitly. However mistakes can be made. But, most important the people who fixed the ranges didn't understand thyroid anymore than doctors do. Just because the TSH range goes up to 4.5 or 5 or even 6, doesn't mean that someone isn't hypo with a TSH of six. Because they are. Ranges are fixed based on the average of blood tests done on the local population. But, there's no screening to make sure that non of those people is hypo or hyper. You are hypo with a TSH of 3. But, if the range goes up to 5, a doctor will tell you that you are ok with a TSH of 4.9. He doesn't know any better. And, when it comes to the FT4, it's somewhat rediculous to believe that a person with a result right on the bottom line will feel the same as if it were right up the top. But, if you don't actually have the disease yourself, you're not going to know that, because you didn't learn it in med school.
So, by now, you're probably saying 'well, why don't they improve thyroid education in med school'. And the answer to that is that Big Pharma will not allow that to happen. BP is making several small fortunes out of doctors treating every single hypo symptom as a separate disease. What with statins - especially statins for people's non-existant cholesterol problems - and Beta Blockers and PPI's and the list goes on and on, think of all the money they would lose if doctors knew how to treat hypos correctly and make all their symptoms go away. And, as BP controls the purse strings in medical schools, they are going to make sure that never happens. The dodgy blood tests and the ignorant doctors are all working in their favour. And, doubtless, that's the way it's going to stay until BP is dethroned.
So, don't run away with the idea that the medical profession exists to cure people - a patient cured is a customer lost. It's a business. It's all about money. And, if patients suffer, that's just too bad. Oh, if you're in a car accident, they'll go all the way to save your life, whatever it takes. But, have a invisible, chronic illness and you're on your own. And hypothyroidism really is a nice little money-maker because of those 300 symptoms. And, that's why forums like this exist.
Hi greygoose thank you for the very detailed reply. I thought maybe getting a second opionion from an endocrinologist might help. As I am really struggling now. It's like hell 😔 X
It might, and it might not. It depends how much the new endo knows about thyroid. And you won't really know that until you've seen him. But, do you know if he's a thyroid specialist or a diabetes specialist? Because most of them are diabetes specialists with just vague notions of how the thyroid works. If that's the case, then he's probably not going to be much help at all, I'm afraid. Not even if he's private, because basically, they all get the same lousy NHS education on the endocrine system.
Thank you i will do. Sorry for all the questions but do you think i already have hashimoto's or its something that I will develop in future? I only ask because no dr has ever mentioned it
Doctors tend not to mention it. I don't know why they even test for it, really. For a start, they don't call it Hashi's in the UK, they call it Autoimmune Thyroiditis. But, they know absolutely nothing about it, so probably don't mention it in case you ask any questions they can't answer.
But, yes, with those TPO antibodies, I think you have Hashi's.
Don't apologise for asking questions. It's the only way we learn. Ask as many as you need.
Thank you greygoose 😊I have been symptomatic for a while now and still nowhere near finding out what's wrong. I have asked Dr's before if they would cause any symptoms and they always say no. Surely if they're attacking the thyroid it would cause some symptoms. Is it best not mentioning autoimmune thyroid disease to the new endo do you think?
Ah, but they're not attacking your thyroid. TPO antibodies don't attack anything. What happens is that your immune system launches and attack on your thyroid, and traces of TPO - a protein found in the thyroid - leak into the blood stream. The TPO antibodies come along, and envelop these traces and take them away to destroy them. Because TPO should not be in the blood.
It's a common misconception that TPO antibodies attack the thyroid, but they don't. Whether or not they, themselves, cause symptoms is unproved. However, if your thyroid has suffered attacks and is now unable to produce enough thyroid hormone, that would cause symptoms. But, we don't know how much thyroid hormone you actually have.
You've told us that your TSH was 2 on a previous test. But TSH is not a thyroid hormone, it's a pituitary hormone, and it's not exceptionally high - maybe your thyroid is struggling a bit, but we don't really know from that result.
And, you've told us that, at the same time, your FT4 was 15, but you didn't give a range. A result without a range is meaningless, so that doesn't tell us anything, either.
What's more, neither FT4 nor TSH cause symptoms. It's T3 that causes symptoms when it's either too low or too high. So, that is the most important number, and we haven't got that. So, it's difficult to make any sort of comment on your thyroid status at the moment.
And, symptoms can appear long before anomalies show up in blood tests. But, as I said, doctors know nothing about symptoms. They go strictly by the blood test levels - and they don't understand much about them, either! Which is why we're in the state we're in.
But, as your new endo claims to be a specialist in autoimmune thyroid conditions, I think you should mention it to her - hopefully, she'll know more about what the TPO antibodies know than the average Joe-endo. But, presumably, she will do thorough testing herself. If she doesn't, she's not much of an endo, either.
Thanks again for the very detailed reply. I had a private thyroid test done in January but it wasn't early in the morning as recommended or fasting. The nurse came at 2pm. So not sure how accurate the readings are. My t3 was 5.06 the range is 3.10-6.80 the free t4 on that test was 17.200 range is 12.00-22.00
Early morning and fasting only affects TSH. Although your FT3 might have been slightly higher early morning, nothing to worry about.
So, your FT3 and FT4 are just over mid-range. Which is good. And no indication of a conversion problem. So, on the face of it, you should not be having hypo symptoms. BUT, there's no test to tell you how well your thyroid hormone is getting into the cells. If you have hormone resistance, you can have great levels on a blood test, but still have hypo symptoms because the hormone isn't getting into the cells. Although, it's probably too early in the game to think about that possibility.
The other thing we need to know is, was it on this test that your TPO antibodies came back as over 1000? All these tests should be considered together, to get the full picture. If your antibodies were over a thousand with those levels of FT4/3, it would suggest that sometime previously, your thyroid had suffered an attack. If that were the case, then that would suggest that your FT4/3 levels were on the way down, and weren't normally that high - they were a bit higher than average. In which case, the tests - all of them - need to be repeated to see what your FT4/3 levels are now.
A blood test is like a photograph. It just shows you how things are at that precise moment, not how they are all the time. Could be that that is where your levels normally are, but we can't just assume that, we have to keep testing until we get a pattern. January was almost four months ago. A lot can happen in four months.
Ah ok i thought it affected all.the levels. Not just tsh. My antibodies were only tested by the gp last may. That's when they were over 1000. I find it all.so confusing. Thanks for the explanation. Would it be worthwhile getting a full panel done privately before seeing the new endo then? My gp only checks it every 6 months just now. They never test the t3 anyway
Well, I think I might wait and see if the new endo does her own tests. She ought to. And she ought to test T3. If she doesn't, then get it done privately.
The reason we always tell people to get their blood tests done early morning and fasting, is that GPs only go by TSH, so if you want a diagnosis of hypo/an increase in levo/to avoid a decrease, it's best to have your TSH as high as possible. As that test was just for you, it didn't matter. The results were still accurate.
Ah ok. I had thought that they might not be. I don't know what else can be causing such extreme temperatures and fatigue, any ideas if it's not the thyroid? It's been suggested i have lupus but that's still under investigation.
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