I have older posts about my ongoing issues- but I have a query specifically related to thyroid. Most of my long standing symptoms are thyroid-like, but of course GP not interested as my TSH is ‘normal’
My TSHs at the GP have been 2.8 and then 3.1 recently. I had the private set done back in May- pic attached.
My question is- does the presence of thyroglobulin antibodies mean you definitely have a thyroid issue and should press for a trial of levo? Or not? I can’t quite find a clear answer anywhere
Thanks in advance
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Chris1802p
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I can't quite make out the numbers in your photo as they are too faint, but if the numbers are in range, as I think they are, then no, they aren't signifying an autoimmune condition. And remember, that some perfectly well euthyroid people can evidence antibodies, without having a thyroid problem.
The Thyroglobulin Antibodies result is 85 (range 0- 115). But am I likely to be euthyroid given that I have antibodies and my TSH is now over 3 and I have been having many symptoms for years?
I mentioned healthy people having antibodies only to clarify that having "some" antibodies within reference range doesn't necessarily indicate the presence of an autoimmune condition. It is confusing, because conversely, it's also thought that you can have an autoimmune condition despite the absence or low level of Abs. But as they are, your in-range Abs levels won't lead to a Dr diagnosing you as having autoimmune thyroiditis. That does not mean that you can't nevertheless, have a failing/struggling thyroid, but as your TSH, FT3 and FT4 are all within their respective ranges, you may find your GP unwilling to acknowledge and treat that even though you may be symptomatic.
Sorry I didn’t read your post properly. A TSH over 3 is enough to diagnosis hypothyroidism in some countries but not here unfortunately. You need a TSH over range and T4 under range, or a TSH over 10. Sometimes you can persuade a GP with an over range TSH and positive thyroid antibodies.
If I were you I’d keep testing every 6-8 weeks and see what your thyroid does. You can then show your GP once your thyroid results meet the criteria for a diagnosis. It’s frustrating unfortunately.
You may want to consider getting a thyroid ultrasound done as some people have hashis but never test positive for antibodies. An ultrasound will show if thyroid has been attacked by your immune system.
Your TSH may be too low for a GP/Endo to be interested but it is still too high, especially given that you are symptomatic and have antibodies. (According to Dr Toft the TSH will be completely normal with a nodule, which means my 'correct' TSH was my pre-op 0.7, not the very symptomatic 2.38 that it is now. Most healthy people have a TSH of about 1. Increased risk of heart problems by TSH of 1.5, so can't be 'normal'.) Have a look at Thyroid UK's Interpretation of Thyroid Blood Tests. I can't get any treatment either so am concentrating on getting vits and minerals optimal but also getting gut health as good as I can to improve conversion and reduce inflammation/stress on system. If not yet gluten free, would very much recommend it, preferably after a coeliac check. May have food sensitivities/intolerances - any other auto-immune conditions yourself or in family?
Other family members have symptoms but nothing diagnosed,no. It’s just all so confusing, not knowing whether my symptoms might be thyroid or B12. Or something else entirely!
Been looking through your old posts, hope that's ok, and would say that low iron is often the first sign you get of a gluten problem, be it NCGS (Non-Coeliac Gluten Sensitive, which GP will not be interested in) or Coeliac. My Coeliac test was low (although had been off gluten for 11 months by then) so ignored by GP much like yours and I also wonder about low IgA as I am showing antibodies but only low to most of my various conditions.
Low B12 (and yours is still too low - you can get neuro symptoms at less than 550, I certainly notice if I drop below about 500, better 800 for me) could well be due to poor absorption in gut because of gluten (which could also be behind the IBS symptoms).
Our current Coeliac testing is great at picking up people with late stage villi damage but not much use before that. About 50% of Coeliacs don't have the usual markers and only 30% with partial villous atrophy will show antibodies. Part of the reason why only about 15% of Coeliacs have a diagnosis. Much more likely however that you are gluten sensitive - goes hand in hand with other auto-immune conditions (an ever-increasing list as we discover more about roots of chronic disease) - for which the best thing you can do is get off gluten anyway.
Really need to consider food intolerances and look into auto-immune diet recommendations (gluten, probably all grains (be especially wary of corn which seems to be in everything and can cause as much villi damage as wheat but obviously won't show on normal blood tests which are only looking for one fraction of wheat protein), dairy, nightshades, nuts, seeds, eggs...). Have a look at Micki Rose's site Pure Health Clinic - vast amount on gluten, testing and all sorts of other useful stuff and has done a huge book (ebook cheaper although I bought the printed version as I like a real book!) called The Gluten Plan. Not sure if you are still on the Fluoxetine, but they are not going to be helping your thyroid (fluoride is a problem - can depress thyroid function and affect TSH level so it looks ok when it's not). Depression could be down to the gluten and/or thyroid anyway as could your rash. Skin and neuro problems particularly associated with NCGS, don't have to have gut symptoms at all. Hope some of that helps.
Yes it does, thankyou for taking the time to reply so comprehensively. I really should try gluten free. But I do find that quite difficult, especially as I’m cooking for a family. I’m also going to stop supplementing B12 and retest that , plus MMA if needed, in a few months as recommended by all the other helpful people. Thanks so much everyone!
Dr Toft - states that if antibodies are present we should be prescribed. If you email Dionne at:-
tukadmin@thyroiduk.org
and request a copy of Dr Toft's Pulse online article. He is physician to the Queen when she's in Scotland. He states that if antibodies are present then we should be prescribed.
The article uses the word “positive” and your results are negative for TG and TPO ab. However antibodies do fluctuate so if you are having lots of symptoms I would tests again in a few weeks.
I note from your previous post that you were anaemic? And you had low vitamin D? Has this been sorted? Your vitamin D level should be around 100 ideally and you need to only not be anaemic but have a ferritin level around mid range. People with a ferritin level under 50 can still feel anaemic even if they are not. And this can give you lots of symptoms.
Have you retested to check your levels are improving. Iron/ferritin particularly can be a tricky one to increase. What iron and vit d supplements are you taking and how much?
I’ve just looked back through your posts and can see your b12 serum was pretty low and your active b12 was below 50. I am not sure the advice you recd about this was correct at the time. My understanding is that active b12 results between 25-50 require further investigation so an MMA test. See the link below:
Please be aware that if you have been supplementing b12 already this can skew the results of any blood tests.
Your folate is also low in range but I would wait to supplement that as well until you have had any further b12 tests done as you are supposed to supplement all the Bs together. I understand you should also supplement either b12 first or folate first before introducing the other as as a supplement I can’t recall which way around it is. @SeasideSusie May be able to provide further info on this.
I understand you should also supplement either b12 first or folate first before introducing the other as as a supplement I can’t recall which way around it is. @SeasideSusie May be able to provide further info on this.
It's B12 that is started first, then folate/folic acid/B Complex is introduced a few days later.
However, if you've been supplementing B12 for a while then you will get a false level as you have to be off B12 for 4-5 months to get back to a baseline level. Also, taking folic acid (in any form) masks signs of B12 deficiency.
If it was me, I'd come off both B12 and folate for a couple of months then retest, see what your levels are like then and if they're still low then follow SlowDragon's advice.
Small update- gp rang me today with results of recent blood tests- lupus anticoagulants has come back ‘weakly positive’ which he explained could mean antiphospholipid syndrome. But I’ve never had any clotting episodes so he’s going to speak to others and come back to me. But I do have numerous headaches plus all the other issues mentioned before. No idea of the significance of this.
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