New blood work thyroid antibodies up

For some reason my Doc tested my antibodies again and they went up. But my tsh and free t4 are ok. 2.24 & 1.3

Thyroid peroxidase ab = 127.9 up from 49 2-3 years ago and thyroglobulin ab is 7.5 up from 3.9 3.9 is normal range. Ranges were .0-9 & 0-4.

I've been on 25 MCG Levo for 1-2 years or so.

I finally had the cortisol and acth levels done they were normal. ACTH was 6 and cortisol was 12. No ranges given for them. I had it done in the afternoon because I just can't get up early enough for anything

Like that anymore. I'm too exhausted and it messes up my blood sugar for the whole day. I've definitely been sleeping a lot and feel like I have mono or something.

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11 Replies

  • TSH is best under 1 but have you the ranges for those results? 25levo is a starting dose and usually increased after testing after 6-8 weeks.

    Also how's your FERRITIN, FOLATE, b12 and vitamin d levels? They should be optimum not just in range.

  • I tried raising the dose to 50 mcg and my blood sugar spiked too much. B12 was too high last time like above 2500 so I stopped supplementing it. He didn't test it this time I don't think. Vitamin d has been low for a while. But pth is high and I had a high calcium at first so I can't over supplement vit d. I'm excreting a lot of calcium in urine. Ferritin and folate were fine when I had them tested and I was tired then too so it's not that. I'm wondering if I've had a reactivation of Epstein-Barr again. I had a reactivation of it after I got out of the hospital almost 5 years ago. And one of my students said he had mono. I know it's supposed to be the kissing disease that I have read that you can catch it by other means to. Or at least have it reactivated anyway.

    Range for tsh Range:0.270 uIU/mL - 4.200 uIU/mL

    Free T4 1.30 ng/dL

    Date: Apr 24, 2017 04:32 p.m. EDT

    Reference Range:0.93 ng/dL - 1.70 ng/dL

  • I'm not surprised you're sleeping a lot, you are very under-medicated. A TSH of 2.24 is not ok.

  • Well it's in the normal range so I don't see that it's really under medicated or not ok. The highest it has ever been was three and that was when I got up earlier in the morning last year I don't remember now to have it done. At that point he tried to raise it to 50 but I couldn't do it. However when I did try to raise 50 MCG my blood sugar went very high so I had to lower it. My father on the other hand has it now started taking Levo again and increased his dose I think he's on 50 to 75 now maybe. And his blood pressure is OK plus the swelling in his feet stopped.

    When I was having extreme fatigue I also had an eye infection coming on and not sleeping enough. I Wonder if it was that plus a lot of stress in my life etc. The diabetes alone has made me feel totally exhausted since I was diagnosed and I am up all night at weird hours taking care of my blood sugar etc. the blood sugar swings make you exhausted It could be more that than anything to do with my thyroid.

    My fathers TSH is much higher than mine I don't remember what it was when he was first diagnosed. And his anti-bodies are much higher. Now that he is medicating again the antibody level came down. That is only on the lowest dose and 50 MCG now

  • OK, as you wish. But most people would feel very ill with a TSH that high, and need it under 1.

  • 000ggg the more you read on these pages the more you will learn about ranges and how they affect the body, the ranges used, especially for thyroid problems were as a guide only, and for healthy people, I can't advise you on your diabities as its not something I have any real know,edge on, but I will say, if you are having that much trouble keeping your levels steady then I do hope you are getting a lot of support and help from your diabetic nurse.

    On the thyroid side, greygoose is correct in saying that a tsh kevel of 2.4 is not ok, especially for someone on medication for it, you have to go more by how you feel and not a reading, ( unlike your blood sugar). If my tsh gets up above 2 then I feel decidely ill.

    If your medication increases your blood sugar do you not increase your diabetic medication to counter act it?

  • Thank your whisper – my TSH has always been at this level before I was even medicated so I'm not really sure what to think since it's in range. my doctor is not going to start increasing the dose of levothyroxine. As I said he increased it when one test was at 3 three months after I started Levo. As far as the diabetes goes I have type one diabetes and it is not unusual to have fluctuating blood sugars and very low blood sugars which are dangerous also high blood sugars are dangerous if you don't have type one diabetes there was no way I can explain that to you but that is the first thing that I have to worry about my blood sugar above everything else other than life-threatening events obviously. Last summer I was in the hospital with high blood sugar and keytones my blood sugar was crashing every time I ate and I had lost 20 pounds. I don't want to get back in that situation ever again if I can avoid it. After a lot of hard work and eliminating all gluten for cross-contamination and all grains I have gained some weight back and I am much more stable with a better A-1 C now. When I increase the levo dose just to 50 MCG my blood sugar was jumping up to 250 and higher. that is not something I'm going to do. And it's not even clear that I need to be on a higher dose or on it at all as far as I can tell. I tried stopping it but I get a severe migraine now if I try to go off it so I guess I'm stuck on 25 MCG for the time being anyway.

    Increasing insulin is not a solution because when I increase insulin because I have very variable blood sugars I am then in more danger of having worse lows. if you were on insulin and had the type of fluctuations I have you would know what I'm talking about. we will do anything to avoid lows. That is why I eat a low-carb a hydrate diet so I take smaller doses of insulin- it's a lot safer that way. But even with what I do it is still always a danger.

    Another thing about assuming that I could increase my insulin it's not that simple – if I increase my basal insulin that's not going to stop the spikes that I got from levo in part because there is no way of predicting when that Spike is going to happen for me and then once you get to a level of 250 you have to correct it. Also keeping in mind that you are eating two or three meals a day and the insulin that you take for the meals plays into that as well as all of your activity. It is very complicated and nit easy to figure out what is going on

    What I don't get about this site is why everybody tells you it can't possibly be normal to have a 2.5 TSH even though that is not even at the high-end of the range that I was tested for at all.My T4 level is OK they are both in range. And as you say everyone is different so why assume that. Are you saying nobody could possibly feel good unless they have a TSH of one? My father has a TSH much much higher than that- he's on 50 MCG now but he feels fine.

  • Hi 000ggg there is a good reason members here don't want to accept a TSH as high as yours as "good". The fact is that doctors are not supposed to treat thyroid hormones so loosely to be "within range", but many GPs who don't understand anything about the endocrine system treat hormone like other readings and are happy just to have them "in range". I personally have had a battle with levothyroxine and trying to get my TSH to a good point. Luckily I've had good qualified doctors to help me along the way, each and every single one of them (including 3 endocrinologists) all aimed to get my TSH to 1 or below as they understood that with hypothyroidism that is the goal and where most patients are rid of symptoms. I had a TSH that was also "within range" for many months, just a slight bit higher than yours, yet the doctors were all unhappy, my Endo actually got angry that he wasn't able to lower my TSH properly without causing me more issues. This was legitimately a 6 month long battle. All the while I was "in range". And I had tons of symptoms.

    The kicker is that TSH doesn't actually matter that much, what matters more at FT3 and FT4 readings, those show how the levo is being absorbed and converted to T3 in our bodies. But before a doctor will consider those values they always aim to bring the TSH to around 1 or under.

    Now please consider we are all different and while the VAST majority of us do better with a TSH under 1, some are actually perfectly fine with a TSH of even 2 or 3, what matters is how to feel! Do you still have symptoms? Then you are likely under medicated. Do you not have symptoms? Then the whole discussion doesn't matter.

    Personally when my TSH was at 1 I wasn't doing that well, the other tests FT3 and FT4 showed that I wasn't converting the medication properly and they had to put me on T3. Now my TSH is under range! And I'm finally doing better. My Endo isn't bothered by my TSH reading because he knows how to interpret the results, and not just blindly put numbers inside ranges.

    I tried to explain this as simply and quickly as possible, because actually it is a really long and complicated thing explaining why TSH matters and doesn't matter, what TSH actually is, how it works, and how TSH readings can (and often do) let down hypo patients. If you truly are interested to learn this I can give you much more info. But please be open to learning for yourself, and don't just go by what a couple doctors say. Doctors are just people, and not all of them are truly that great at their job (to put it lightly). When you learn how this condition works for yourself you will be much more empowered and will have the ability to spot doctor's BS long before it does you harm.

  • I've had plenty of doctor bs between myself and my family to last more than several lifetimes and much worse than the things in this discussion. I'm able to spot it. What I don't understand is the chorus here on if your level isn't at x that is the problem. My Doc is an endo and it seems most endos disagree.

    I am symptomatic for fatigue but it's not really clear to me what is causing the symptoms since the blood sugar swings alone and trying to live with that and have some kind of a life that resembles anything near normal is enough to make anyone feel exhausted every second of the day. Another thing I notice which I pointed out along time ago is that there are numerous posts here by people constantly complaining that they don't feel good whatever level they are at and whatever dose or whatever medication they are taking.

    Is there anybody that actually feels better from taking the thyroid medication? I mean I know some people have to take it if you're severely hypothyroid or if you have Graves' disease or whatever. My father actually stopped taking his totally and he was pretty severely hypothyroid but his activity and energy level didn't get worse when he went off it. He had to stop as I said due to blood pressure increases but he's back on it again now and it has been OK for him.

    I guess you do since you said that the lower tsh was where you feel ok.

    I'm too exhausted and dealing with too much right now to start trying to read complicated books or posts about TSH levels and since nobody seems to agree on any of it it I'm not really sure what the point would be. I don't have the energy to go around to 50 million different doctors and right now I'm worried if I'm even going to end up having health insurance with what's going on politically etc.

    I have felt ill since I was put on insulin. I feel weak, tired and hungry a lot if the time. It's worse often when my Bg is in a more normal range- I feel weak and like my Bg can easily crash. Insulin makes me feel hungry so I feel like I'm starving.

  • Long story short: the main consensus on treating thyroid hormones is that for this condition the results matter over clinical changes. Meaning that doctors have been trained to ignore symptoms and just put patients in the range. This is done because of very outdated information (which is now being proven wrong) that "over medication" with thyroid hormone leads to heart problems and osteoporosis. In fact this isn't the case and well trained Endocrinologists who have proper experience know that optimizing the hormone levels (not just getting them in range) resolves many of the symptoms that thyroid patients complain about without adding risk to bones or heart. In fact it is common knowledge amongst doctors that hypo thyroid patients are commonly still symptomatic even once brought into range with levothyroxine alone, but once again doctors have been trained that once you're in range you treat those symptoms with other drugs instead.

    But there are many Endos out there who know that these symptoms can be gotten rid of by increasing levo, or in some cases (many cases actually) adding T3. I've been to several Endos myself as I've mentioned, the reason for this is because the first 2 were idiots who legitimately had no idea how to treat me or my symptoms. I eventually was able to get a referral to an Endo who is a Professor of endocrinology (Prof. Dr. md), and he personally confirms most of what is spoken about on this forum. He treats his patients based on numbers AND symptoms, making sure to rid patients of symptoms, while using the numbers to ensure that he doesn't over medicate his patients but that they have sufficient levels of T3 hormone which is what actually matters most. With him I've trialled a few alternatives to just levo alone and I finally ended up being given a combination pill of T4/T3 hormone which is perfectly dosed for me. My TSH is under range, my FT3 is right at the top, and he's happy with that because my symptoms are gone and in no way am I in danger of over medication (according to his professional knowledge).

    Imagine how much work that is for most GPs or Endos who can't be bothered to step outside the box. That is why most doctors do as they're told and ignore the symptoms once in range.

    Another thing you should know is that Hashimoto's and hypothyroidism are not as well studied and understood as other auto immune diseases, or endocrine conditions like diabetes. Scientists have been able to synthesize T4 and T3 hormone and have created tests that can measure the activity of these hormones in the blood, but there is little knowledge of how these synthetic compounds work at a cellular level, there is no test for this. So just because numbers become in range or even optimal it doesn't mean that the hormone is actually efficiently and effectively doing it's job at a cellular level, and this alone can leave patients symptomatic. Which is why we keep saying it's not about the numbers but how you feel. Many of us have learned these things through experience. The second half of the equation is dietary changes (many find gluten free to help, or other diets) and vitamin/mineral levels, lifestyle changes. These things are often needed to ensure the hormone properly works in the body, regardless of your TSH.

    It starts to become apparent at this point that doctors can (or only choose to) do so little, because it actually takes a lot to improve with this condition. But in the experiences of many members it is very possible, and the first place to start is with optimizing thyroid results, then optimizing vitamins and minerals.

    If a TSH of 2 works for you then that's ok! You are who you are and one thing I can guarantee is we are all different, but in general in order to obtain higher levels of FT3 and FT4 (the actual level of hormones freely available in the blood) TSH tends to have to be lower. And often even at TSH of 1 we find that patients still don't have optimal levels of FT3. Another thing is that the thyroid produces about 10-20% T3 and the rest T4. So when the gland starts to produce less (as is the case with hypothyroidism) then FT3 levels drop, as now you're only left with the amount of T3 your body can convert from synthetic T4, and this is assuming you're able to convert it in the first place. If you're unable to convert your TSH could easily be 1 or even suppressed, but you'd still be symptomatic and you wouldn't know about your conversion issue without FT3 and FT4 results.

    So in general TSH under 1 tends to work. But in all reality TSH doesn't actually tell us much other than if we have a pituitary problem or not, once we see that TSH responds to levo you can toss that stupid thing out the window and focus on FT3 and FT4, and if your conditions still don't improve then you'd have to check TT3 and TT4 (total t3/4) and RT3 (reverse T3).

    I hope I've explained with some clarity about the whole issue. Sorry that it became so long.

  • Sorry I didn't touch on the insulin problem, while I know that is a common issue with insulin I don't know enough about diabetes to really advise.

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