antibodies, b12, and the lot. What to do now?
yirara
Posts: 9,997 Member
Looking for some experience here. I had some blood tests done as I have all sorts of health problems (easy weight loss, poor concentration, tingling in limbs to name the worst). Note, my TSH is up and down for years, but now I finally found a doctor willing to do an antibody test. The results are:
Free T3 2.42 pg/mL (2.3-4.2)
free T4 1.16 ng/dL (0.89-1.76)
TSH 1.98 uIU/mL (0.55-4.78)
Thyroglobulin Antibody (Anti-TG) 320 IU/ml (positive: >60)
Now this doctor said that I'm healthy as the TSH is fine (he ignores the fact that it's been over 4 several times this year) and the antbodies might be from a virus infection. Basically, my thyroid is ok. Might he be right? I'm especially wondering about the antibodies.
Note, my total vitamin b12 is at 340 pg/mL (193-982, though some websites mention a border of around 500 for neurological problems) and my red blood cells are enlarged and storage iron is somewhat low (been taking iron pills for two months now and it did come up). Thus this might be the reason for the antibodies according to what I read online. But again, the doc said there's nothing wrong with iron, B12 and red blood cells. I'm uncertain how to continue now. What is a high antibody count that might indicate thyroid problems, what is considered low, which might indicate other problems?
Thanks.
Free T3 2.42 pg/mL (2.3-4.2)
free T4 1.16 ng/dL (0.89-1.76)
TSH 1.98 uIU/mL (0.55-4.78)
Thyroglobulin Antibody (Anti-TG) 320 IU/ml (positive: >60)
Now this doctor said that I'm healthy as the TSH is fine (he ignores the fact that it's been over 4 several times this year) and the antbodies might be from a virus infection. Basically, my thyroid is ok. Might he be right? I'm especially wondering about the antibodies.
Note, my total vitamin b12 is at 340 pg/mL (193-982, though some websites mention a border of around 500 for neurological problems) and my red blood cells are enlarged and storage iron is somewhat low (been taking iron pills for two months now and it did come up). Thus this might be the reason for the antibodies according to what I read online. But again, the doc said there's nothing wrong with iron, B12 and red blood cells. I'm uncertain how to continue now. What is a high antibody count that might indicate thyroid problems, what is considered low, which might indicate other problems?
Thanks.
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Yes, your doctor might be right.
Your thyroid levels look normal. Weight loss is a symptom of hyperthyroidism, and brain fog can be a symptom of thyroid disease. But they each have hundreds of other causes, too.
In addition to the presence of antibodies, Hashimoto's (autoimmune thyroid disease) is diagnosed by ultrasound. But nothing you've written suggests you have a thyroid problem.0 -
Look, I don't know what I have. I'm just annoyed that I've been running to doctors for quite a few months now and finally want to know what's going on, and while my blood tests are far from ok and that I have masses of issues I only hear that I'm healthy.
Two things: If a doctor here says that a person is healthy, she is, regardless of the physical problems. A doctor here does not accept that the patient disagrees. I won't get further tests, like Holo-TC or an untrasound. And secondly, I'm the only female in my family without diagnosed thyroid and vitamin B12 problems. And I'm just annoyed0 -
I know all too well about doctors dismissing your symptoms and refusing to run any tests! My Hashimoto's went undiagnosed for years.
I hope you find a doctor who'll listen to you in 2015.0 -
Poor concentration and tingling could be a sign of low iron. How low is "somewhat low"?0
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Iron was ok (last test 13.5 umol/L (5-30.5)), storage iron was low at 25ng/ml, but I started taking iron pills and over the last about 9 weeks it came up to 40 again. Total iron binding capacity was also high and is now looking better (78.6 umol/L (46.7-85.6) down from 103.3). Thus yes, iron was low and is getting better again now. I do feel less tired, but taking the iron pills has so far no influence on the tingling.
I had asked for a holo-tc test, but only got a normal B12 test, which now is 340 pg/mL (193-982), down from 450 in 9 weeks.
MCV is close to the upper edge of the range, meaning the red blood cells are somewhat enlarged, which seems to be in line with a mild B12 or folate deficiency or thyroid problems (or being preggers or a drunk, which I can both deny ). MCV 96 fL (80-100) - up from 94 9 weeks ago.
RDW was above the given range and is now looking better:14.1% (11.6-14.8) - down from 16.
It's all within lab ranges, but partly just about, which seems to mean for most doctors that I'm healthy and that I should stop complaining. *sigh* Yes, one said I'm imagining the tingling.
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Probably thyroid problems are one of the most infuriating health problems there can be simply because it can impact on so many different aspect of one's health. I have read a list of some 300 possible health impacts a sufferer might have in any combination. Most doctors are only able to go by "the dreaded numbers".
I think I first found evidence of the numbers actually not being reliable on the "Stop the Thyroid Madness", web site. They hold the view the original research is floored. Personal information was not given with the Blood test. Knowing if the person or family members were or weren't patients could have helped better define the normal range.
My symptoms are life long and in parallel with salicylate sensitivity, the latter being a form of toxicity which causes extra pressure on the thyroid systems requiring greater hormone production. (Salicylate is present in many vegetative foods and generally in the environment from pollen to smells in cleaning product and perfumes which society thinks it needs creating ever increasing allergy problems. We all have our own comfortable level. You just don't expect toxins to be permitted in general products, or do you. No one could associate washing their hands with some liquid soap with the bout of desperate indigestion it prompted in me and I am aware and should have been more careful).
I am trying to get help for my multifaceted symptoms but I have to research for my self. I read on many thyroid support sites and general dietary advice gives an RDA for iodine as 150 mcg. Thyroid UK gave 150 mcg as a lower requirement with 300 as upper and anything over 600 as probably too much. When we also consider STTM, says up to 80% of the US female population is probably deficient in iodine we have a frightening picture. For some their normal diet may be deficient because the soils are deficient. Their diet could also be deficient because they like me have lived with dietary restrictions for years avoiding foods richer than most in minerals and iodine because full fat milk and dairy was bad for health. Skimmed milk is considered better but it holds less iodine and other healthy minerals. Eggs were criticised because of the cholesterol but now we read for most cholesterol is made within us and our direct intake may not be so great an issue. Returning to the cultivation availability, I am unable to eat most of the high iodine fruits and veg because they are also high in salicylate which had my waistline bloating along with everything else.
Many natural therapists particularly US based ones where they also use blood tests they have now see good results in their thyroid patients when iodine and selenium are taken preferably as foods but as supplements if necessary. Even those with antibody's present have seen a reduction in numbers of antibody's.
One thing is certain the thyroid and its many relationships with other organs and glands within ourselves are far from the simplistic process which many medically trained people believe where our TSH levels (here in the UK) dictate how well we are. We are all compelled to find our own personal answeres0 -
Why are your elevated antibodies being ingnored? That right there needs to be investigated further. My endo states a positive test when it comes to antibodies is a problem.
Hashi's can produce a swing in the TSH.0 -
Yes, I know that! Mind you, it's been a very long while but I did work with blood results in the past. The internal medicine doc claimed the antibodies are from a recent virus infection. Well, must have been one that decided to be invisible on all recent blood tests :disagree: Still, at least he gave me a transfer to an endocrinologist, after I insisted. And likewise he prescribed me well-absorbing b12 pills, after I insisted. Unfortunately not the injections I wanted. I'm considering checking out if I can get them without prescriptions as I do prefer shortcuts.
Brw, I had an angiogram with some contrastfluid in July, some 7-10 days before all the current mess started (surprise asthma attack - never had asthma and don't have since). I don't get an answer what kind of contrast they used, and if it contained iodine.
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I agree with the antibody test -- that indicates Hashi's and both your T4 and T3 are in the low/normal area (especially the T3). I'd really suggest you speak with a thyroid specialist -- so many doctors, including, endos just have no idea what they're doing relative to thyroid issues.
With Hashi's -- which you may have given the antibody test -- the other blood tests are not as helpful because it's literally impossible to know how much of the raw hormones are effective. The antibodies could be blocking 2% or 92% -- so folks with Hashis should be looking both at test numbers and symptoms. I personally don't feel good and have my symptoms alleviate until I'm in the upper third of the "normal" range. When my my T3 was where yours was, I felt AWFUL. And yet 5 docs over 10 years told me I was fine or "within range". I didn't even learn of Hashi's or get the antibodies test until I sought out a thyroid specialist specifically, even though I had TONS of textbook symptoms. Too many docs just don't know that much about thyroid.
Here's a good article that discusses some of the test issues and how to interpret them:
http://www.thyroid-info.com/articles/woliner.htm
Also, has your doc checked some of the other common culprits that often go along with thyroid conditions -- DHEA (and other adrenal hormones, Magnesium, Iodine, Vitamin D, A1C (Insulin Resistance), etc.? The thyroid can throw a lot of thing off kilter and even when you get the thyroid back on track, if you don't fix the other things, you can still have quite a few related symptoms.0 -
Thanks a lot lindsey! I'll see the doctor on Monday and will only know then if he knows something about thyroid issues or not. Worst case it's another 130 USD down the drain.
Yes, they also checked
Vitamin D3 (low, used to be lower, I'm suplementing since mid November)
A1C (very good)
Magnesium (doctor says it's fine, but it used to be way below normal range. I've been suplementing since July and it's just within normal range now)
Calcium (was very low in July, still is low. Suplementing since mid November)
Iron: is ok
Storage iron: was rather low, is getting higher now, suplementing since mit November
nothing else was checked.
One thing I noticed: I had some neurological problems: a tingling in limbs and arms mainly and knee muscles gave up 1-2 times per day. Got worse after I exercised. Since I'm taking B12 it is getting better. Yiha! Also, since I'm taking iron and D3 I'm not so tired anymore, though I'm still having those days were I just want to sleep. And I used to have periods of irregular heart beats. Those seem to be getting less frequently and less intense as well. At least I'm doing something right, it seems.
Otherwise I'm not even feeling that bad. Well... I'm not sure what normal is as I've been complaining for years about being tired and having a really bad concentration. And having episodes of losing weight like crazy.0 -
Hi everyone,
I've been textbook underactive thyroid for about 10 years or more but my tests have all been within the normal range (I've been tested throughout this time but more so in the last 5 years). The only thing that has ever shown up was my vitimin D, it was extremely low so I was put on supplements but more recent tests have shown it is low again (despite spending a fair amount of time outdoors). I was diagnosed with Chronic Fatigue Syndrome but I feel this was because they couldn't put me neatly into another box. Thryroid problems are throughout my dad's family - every female is underactive and my sister also. My younger brother was also recently diagnosed with an overactive thyroid. As well as this, there are a number of other autoimmune conditions/diseases in my family (too complicated to go into them all) so I doubt my symptoms are a coincidence. I'm in the UK so I only have what the NHS wants to give me, does anyone think it would be worth my while going private to seek a diagnosis?
Thanks0 -
Here, in the UK we're up against what "NICE" says is cost effective and what pills can be available in general. From my angle they seem to have us all "hog tied". Paths to endocrinology seem to be blocked to the many. I see thyroid health as being personal. There are so many influences on thyroid effectiveness not least the impact of what is described as the triad of glands, the hypocanthus, hypothalamus and the adrenals, then dietary shortfalls etc. They, NICE don't seem to understand the personal pain and abject misery thyroid problems can cause and the foreseeable consequences of unfulfilled personal lives and more widely the working hours lost both to the person and our nation. They, NICE are briefed to assess the impacts of illnesses and project the cost effectiveness of any treatment on offer. I fear they see any thyroid problems in simplistic terms not seeing the wider picture, the over 300 associated symptoms which are displayed differently in every patient, depression being high on the list. We have the highest number of depressed patents anywhere in Europe here in the UK? (why?)
One member in NI, did go private, for consultations and this also came with issues. I think it took her a couple of months to get somewhere, she needed both t3 and 4, I have not seen her input for a while. I hope she is doing well now.
I wish I could advise you how to go private. You still need to find an endocrinologist who is knowledgeable and sympathetic to thyroid problems. There are London centric clinics which have branches in the wider population centres.
My only encounter with our NHS endocrinology system tacked onto the Diabetic Clinic at the local hospital was next to useless. The only thing I got out of it was levo without maize starch, a straight GP could not do this for me. It is a start. The endo considers salicylate issues as allergy not toxicity (salicylate sensitivity comes from the same root as an aspirin overdose only from food and the environment, this is the same toxicity) The NHS testing I received was so restricted, no background testing of minerals and hormones as we see performed for those more fortunate elsewhere that they or their insurance company's pay for. Anyone who pays or has ever paid National Insurance and then pays more to go private is forced to pay twice. The issue then is to see if a better service is available.
All the very best making your decision.
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I'd definitely recommend going private -- looking for a true thyroid specialist. In the US, I've found that to be more found in functional MDs rather than endos. My experience with two endos was not positive. It seems more common for endos to know a lot about diabetes, but not nearly as much about thyroid. Also, in the US, some docs will consult remotely. They'll work with your local doctor but consult remotely. This is how I found my thyroid specialist as the three reputable ones I could find in my area (SF bay area) were not taking new patients -- which is really, really common.
Also, do you in the UK have access to private medical testing? In the US, you can have much of the tests done out of pocket through providers like MyMedLab.com. They're the exact same tests your doctors would order. Then you can look at your values based on your own research. That won't help you get any actual medication if you need any, but it can be a powerful tool in discussing things with your doctor or looking for a thyroid specialist.0 -
Agree wholeheartedly with lindsey1979. After going through 7 doctors who only wanted to look at my TSH after surgically induced hypothyroidism, no one ever paid attention to antibodies OR the actual thyroid hormones (TSH is a pituitary hormone, not a thyroid hormone) to assess my thyroid hormone levels. Crazy how that works right? Now that I'm seeing a renowned Integrative medicine doctor (I pay out of pocket since insurance doesn't cover it - and I thought it was going to cost a lot but its really affordable especially since labs and whatnot ARE covered by my insurance) I've seen dramatic results! I feel alive again, and have no joint pain whatsover after basically being bedridden for a couple years!
Things that he changed was getting me off of synthetic T4 only (thyroid storage hormone) to Naturethroid which is a Natural Desiccated thyroid hormone which contains all the hormones your thyroid is supposed to make, making sure my Free T3 (the actual active thyroid hormone) is at the top of the range, and the addition of vitamins and minerals I was very depleted on. I also take Selenium on a daily basis to keep my antibody levels in check.
Funny, last conventional doc I saw couldn't care less what my thyroid hormones looked like, wanted to put me on all sorts of medicine for fibromyalgia, high blood pressure, diabetes, when all I needed was to get my levels raised. My new doctor has never checked my TSH levels as its pointless.0 -
This website has helped me tremendously to take charge of my health, and its all based on actual thyroid patient experiences - http://www.stopthethyroidmadness.com0
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I have tried looking for functional medicine over here, UK, may be its just me, but we don't seem to be up there yet. Those I found on a list seemed to be looking into other problems Thyroid did not get a look in, then also many seemed to be dietitians, good though they are they, I don't think have the ability to do blood tests, I did not see that offered as a service. (I do have, "who to trust" issues though, a life time of being fobbed off).
I agree STTM is brilliant. The information is naturally US orientated and as such it is often difficult to find/do what is suggested or is relevant in the US here in the UK. NICE controls what otherwise, thinking medics might offer. NICE, is the national institute for something and something, cost and effectiveness? When it comes to UK thyroid problems it is a dinosaur.0 -
Right, I needed the weekend to get over the disappointment. This endocrinologist said I'm healthy. The present antibodies? Well, they just happen sometimes. My last TSH was low. That they have two values on file way over 4 doesn't matter as the lab range is 4.75 or so. Why I've lost weight? He did a quick glucose test and said I'm healthy. At least my weight is not dropping anymore since I went to more drastic measures than just taking pills with regards to B12 - and I am feeling much better!
The annoyance is that I'm in a country with a completely messed up health system. There's a free or nearly free (think 5 USD per consult, or expensive examinations!) health service but the waiting times for non-locals are massive. And then there are many private clinics. I can go to those, my employer is paying everything, but they really struggle getting good doctors. And so you get a lot of not so good ones that are seriously underpaid because they come from crisis regions and would not have any money at all otherwise (lots of Syrians at the moment) or from developing countries. Continue learning doesn't really seem to exist for them, and disagreeing with your doctor is unknown to them.0 -
Just so you know, yirara, they switched the TSH guidelines to 0.3 to 3.0 about 10 years ago (in 2002 or so). Docs who specialize in thyroid made this change a long time ago. If your doc is still adhering to the old 5.0 standards, it seems that he/she is not that specialized or up to date on thyroid.
http://thyroid.about.com/cs/testsforthyroid/a/newrange.htm0 -
I know lindsey! And this guy just told me I'm wrong and know nothing about it... *sigh* I think I'll try to reach out to the expat community and see if I can find a decent doctor. Though I don't really expect much of an answer.
Well, one week with B12 injections and the tingling that bugged me for so many months is almost gone. Another one of those things: my B12 value is fine (sure, you didn't test Holo-TC but serum B12) and there's no need to treat it.0 -
That is super frustrating, Yirara. I have to say that it's sadly not an uncommon experience in the US. Many, many of us have gone through this. It seems to be hugely common with thyroid disorders in particular. Best of luck to you.0
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The Yahoo thyroid group has a list of US and EU docs I believe that are patient vetted. And then there are the FTPO groups on facebook for all over as well. Might be a good way to find a good doc. Or go to your local pharmacy and ask which doctors prescribe NDT.. the ones who do are more likely to check your FT4 & FT3...0
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Thanks MmmDrop, though that doesn't help me as I'm on neither continent.
Great, my tingle came back last night, and decided to spread out more. Been to the state run hospital today (yay, finally a reason to go there, though I'm not sure I should be happy about that) as I'm so fed up with the commercial clinics. There I got a doctor who not only looked like Thierry Henry but who also really listened to me and asked all the right kind of questions. He did the usual tests and transfered me to an internal medicine doctor with the remark 'urgent', though he thinks it's still deficiency of various vitamins and minerals. I'll have another extensive blood test before that appointment as I have no history at that clinic. We'll see...0 -
Well - from your lab results, according to STTM and my personal thyroid doctor, your FT3 should be in the upper quartile of the range. Since the FT3 is the actual active portion of the thyroid hormone, I'm guessing you're not feeling very well. My doctor doesn't even test my TSH as in a lot of cases there's a huge disconnect in the HPA axis. With your high antibodies - you should try taking Selenium supplements to see if it will help bring them down. The STTM website has a "how to interpret labs" page.. you should check it out. It shows all the lab tests that should be run, and where in the ranges we've found we felt best.0
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Sadly none of the endos I have seen was interested in the FT3/FT4 values. They checked them but since it was in the lower end of the norm they concluded that I was "fine". Lol.0
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Yea, I know what you mean. At least I have no problem losing weight. I also had no problem when I was on corticosteroids for a while last year. Other than that I really don't know what is going on.0
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Yiha! I went to see a very young doctor yesterday. I think he's still training as he asked his senior's opinion at a certain time. At least he's doing a full thyroid antibody etc. check and said I'm slightly hypo, based on TSH and fT3. First time ever someone mentioned that. So lets see how this continues. At least it's the first time I met a doctor who actually listens, does some checks, and was seriously interested in my workout programme (most doctors would say to women to stop working out, btw).0
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Very informative, I again was not associating tingling with Hashi but now it makes sense. Thank you all for discussing on this thread.0
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I have too many things to do to really start searching, but I remember that Hashi is often associated with various mineral and vitamin deficiencies - which might cause tingling. If that's the reason for me? Not sure, ferritin and D3 look good now, B12 probably as well, but the normal blood test done was so high now that it's pretty useless (of course I stopped my supplements a week).
Friday the tip of my tongue suddenly started tingling. When I looked in the mirrow I could see red lines all across the tip of the tongue, and each line tingled. It was very localized. Next day in the morning the lines started to vanish and sometime in the afternoon the tingling mostly vanished again. Hmpf...0 -
Tingling may be low magnesium since tingling is a symptom of magnesium deficiency (along with muscle twitches, muscle cramps and other symptoms). Magnesium deficiency is super common in the population at large -- something like 70% for the general US population (I'd seen that somewhere). And a lot of Hashi's people are deficient in magnesium (and vitamin D). Not sure if it's actually Hashi's related or just general, really common vitamin deficiencies. I supplement for both now.
Yirara -- yours almost sounds like a minor allergy to something.0 -
Yes, I agree. I'm already taking magnesium as it was borderline low already before the tingling started. I've been taking Mg since then and it's come up nicely now even though I can only get Mg-Oxide here, and Mg-Chelate, no idea what it is (haven't used it)0
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