In what conditions (other than Hasimoto's) are TG Antibodies raised please? I'm struggling to obtain a clear answer on this.
Below are my MediChecks full thyroid panel results; the MediChecks GP stated that my results indicate Hasimoto's, although my TSH indicates my thyroid function is "fine" currently, therefore just monitor for future emergence.
April 2019:
TG Ab's: 154 (<115) *Elevated*
TPO Ab's: 10.3 (<34)
TSH: 2.67 (0.27 - 4.2)
FT3: 5.85 (3.1 - 6.8)
FT4: 20.7 (12 - 22)
rT3: 18 (10 - 24)
FT3:rT3 ratio: 21.16 (>15)
Historically (over the last 18 months), my TSH has been dropping from 5.74 (peak recorded in August 2018, FT4 was 10.0 at this time) to 1.64 (February 2019, FT4 10.7), and has then climbed again to 2.67 (April 2019, FT4 20.7 - a big jump!). My thyroid function has not been tested since April 2019 (short on money as unable to work), however I continue to experience variable symptoms over time which could well be associated with Hasimoto's (personally, I think they are...), however all NHS GP's I have seen *refuse* to diagnose any thyroid condition and just label me as a hypochondriac etc.
I was diagnosed with Fibromyalgia (by Rheumatology) in July 2019; severe cold environment intolerance (hands and feet loose all sensation, go very cold and white (confirmed not Reynolds), unable to use hands/fingers after being exposed to cold for more than 5-10 mins), chronic chest/back pain, occasional deep muscular pain, fatigue, insomnia/frequent night time waking. Also periods of heavy night time sweating between February and April 2019 as well as occasional fevers in the afternoon/evening, however no one has been able to explain these.
I have also been under psychiatric outpatient care for 2.5 years due to a mood disorder (initially diagnosed as Bipolar Type 2, however this diagnosis was rescinded in July 2019 after an 8 month unmedicated period of improved (but not perfect) mental stability). I have since however experienced a relapse of mental health symptoms, triggered by possibly 1) a chronic lack of sleep, 2) the changing seasons and lack of light, 3) GP prescribing amitriptyline in July 2019 for Fibro symptoms (may have destabilised me; this was discontinued after 8 weeks because I thought it had caused a big depressive episode). I am now working with my psychiatrist again.
I also am believed to have a functional Vitamin B12 deficiency (NHS diagnosed January 2019, with neurological involvement (peripheral neuropathy), Intrinsic Factor AB's NEGATIVE, so it's not a Pernicious Anaemia diagnosis (even though it might well be PA...)), which also presented with concomitant iron deficiency after B12 loading doses (Ferritin dropped from 95 (before) to 30 (after 6x B12 loading doses). I then took 644 mg Ferrous Fumarate daily (322 mg twice daily) for 4 months and have continued with B12 injections every 2 days (I now self inject as the NHS don't think I need any more...), however Ferritin hasn't been tested since supplementation to validate any improvement. As of October 2019, I have reduced my B12 injections to weekly frequency. I also take a high strength broad spectrum MV&M (Holland & Barrett Mega Vita-Min, containing 400 ug Folic Acid among other V&M's).
I also developed gallstones + chronic cholestasis, and had a laparoscopic cholecystectomy in July 2019. I continue to suffer with digestive problems, bloating, flatulence and chronic constipation - this was the case both before and after the operation. Gallstone pain symptoms are largely alleviated now, however.
I was intentionally loosing weight through diet+exercise from March 2018 > July 2019. My weight was reduced from 142 kg to 95 kg during that time. However, I have continued to loose weight since this time without trying, and now stand at 87 kg. My weight is still trending downwards at 500-1000 g/week, and I don't understand why. I am yet to speak to my GP about this.
However, and the reason for this post, is that I firmly believe there is a more obvious and treatable biological/metabolic explanation for the majority of my various physical and mental health symptoms. My TSH bounces around, as does my FT4, and my symptoms! I welcome your thoughts please! I would like to do something more proactive about this!
TL;DR: What conditions other than Hasimoto's cause elevated Tg Ab's? Every doctor says my thyroid function is normal (so I'm trying to understand what else can cause this), however, I believe my thyroid function history (and my symptoms varying over time) demonstrates that I am afflicted by Hasimoto's. I would like to do something more proactive about this!
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Chronic lack of sleep can cause fibromyalgia symptoms and many of the other symptoms you describe according to Dr Gominak. You could do with getting really good sleep advice.
Hi, many thanks for your reply. Indeed I totally agree that chronic lack of sleep has caused, or at least exacerbated, a lot of my more recent symptoms (however the majority were present before my sleep issue started this year). I have been (for about 9 months now) waking in the late night (3-6 am) several times a night for no apparent reason (waking up suddenly, often while mid-dream, and being wide awake and often unable to return to sleep). Consequently I went for months on only 4 hours a night due to this occurring on a regular basis, which definitely flared some my "fibro" and mood symptoms.
It turns out (we only worked this out a couple of weeks ago) that my wife and bed partner of 15 years has developed a (hypothesised) REM sleep disorder, whereby she violently kicks/lashes out in her sleep, very suddenly, very briefly (maybe one *big* kick). It's been fully waking me up pretty much every night, but leaving me clueless as to what actually waked me up (I thought it was me going mad, frankly, and asked my psychiatrist for advice accordingly)! I've also previously noticed she sleep talks/moans, but didn't put two and two together until very recently. My wife has been on Sertraline 200 mg/daily for depression/anxiety for about the same number of months as I have been suffering with multiple night time wakings (c. 9 months) and chronic sleep loss, and the current theory (from our research, which my wife had to offer to the clueless GP!) is that her condition has been induced by the Sertraline (at least at such a high dose, as it wasn't a noticeable problem when she was previously on lower doses). She has now been referred to an NHS sleep clinic, however the referral is for sleep apnoea screening (which we don't think she has from my observations; I've previously suffered from this and know all the signs well), which is a different kettle of fish altogether. The NHS, around here at least, don't seem to offer services for REM sleep disorders (perhaps it would be better catered for under a general neurology referral?). Of course, it might not be the Sertraline after all, in which case it is even more important to get a correct diagnosis. She is currently titrating the Sertraline down very slowly with GP oversight, to see if there is an improvement in the abnormal sleep behaviour and if she can cope OK without it (desirable for her). We are not sharing a bed at the moment as I am so screwed from chronic lack of sleep. I have been trying various medications with GP/Psych help to try and get back to a normal sleep pattern, as I still don't sleep now even on my own. Zopiclone, Diazepam and most recently high-dose Promethazine. Limited success.
I am sure that once my sleep is back on track, a lot of things will settle down, however some symptoms which have been on-going for long before this sleep depreciation episode still remain unexplained (hence attention turned to thyroid, or other condition that may elevate TG Ab's). Unexplained prior symptoms include:
- Severe cold environment intolerance (hands and feet loose all sensation, go very cold and white (confirmed not Reynolds), unable to use hands/fingers after being exposed to cold for more than 5-10 mins).
- Moderate-to-severe persistent pain in the coccyx.
- Digestive problems including bloating, flatulence, chronic constipation.
- Persistent weight loss without trying (loosing several kilo's per month at present with no explanation).
Thanks, I'll look into that link. No I have not had a thyroid ultrasound. GP's aren't even remotely interested in offering one, either. Not sure how to go about it. The NHS have never screened for any antibodies; I only have private test results for Ab's.
The best proactive thing you could possibly do is drop that awful multi-vitamin! I would say you get what you pay for with supplements, but that is rather expensive for what it is.
You shouldn't be taking a multivitamin anyway for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results.
As for the Tg antibodies, they can be raised for many reasons - Pernicious Anemia, for a start. They can also be raised with hyperthyroidism, although that obviously isn't your case. Or with diabetes or rheumatoid arthritis. In that test, they aren't particularly high, so you can't draw any conclusions about Hashi's from them. But, antibodies fluctuate. Have you had them tested before?
If you do have Hashi's, then all your results are likely to fluctuate: TSH, FT4, FT3. And, whilst your Frees don't look too bad at the moment, your TSH is saying that your thyroid is struggling.
There's not really a lot you can do, unless you want to self-treat - i.e. buy your own thyroid hormone replacement. You could try a gluten-free diet, see if that helps - it does alleviate some symptoms in some people. But, you can only replace missing hormones with more hormones. And, whilst optimising nutrients will help, it won't get rid of the root cause, I'm afraid.
Frankly I totally agree with all of your comments on the MV&M. None of your points were a surprise to me, as I had heavily researched all of this at the commencement of my B12 deficiency issue (because my Folate was also on the low side, as was the iron etc.).
Very, very long story short, I have experimented with a lot of test-and-research-result-driven individual supplements this year since my B12 diagnosis, but not made a lot of positive progress, and ended up (largely for financial reasons) defaulting to "the least worst" readily accessible, affordable multivitamin that I could source. Are you strongly advising that I would be best not taking a MV&M at all? I am not in a financial position to keep buying rather expensive individual supplements as I was doing some months ago (including Folinic Acid, appropriate B complex, appropriate multi mineral, iron) - and taking them on an appropriate schedule to prevent cross-over absorption-blocking issues.
My Vitamin D was borderline-insufficient in July 2017 (NHS test 52 nmol/L). I have since (in Winter 2018/2019) self-prescribed a loading dose course of D3, which brought my levels up to 93.5 nmol/l as of April 2019. I have no other test data to know if my levels dropped below 52 at any point, and my D3 hasn't been tested since April (private test, NHS GPs refuse to retest- although Rheumatology thought it would be a good idea to re-test it, but that never made it onto their discharge letter to the GP, so GP won't act upon it).
B12 no longer requires testing as I am on regular (weekly) injections of 1mg hydroxocobalamin.
Folate was 10 nmol/L at the time of B12 deficiency diagnosis. It has since gone up, from taking either Folinic Acid or now Folic Acid (I know it's not ideal) in the MV&M. Around 24 nmol/L when last tested in April.
Ferritin has not been re-tested since the prescribing of Ferrous Fumarate for 4 months. GP refuses to retest it. After my 6x B12 loading injections, it was 30 ug/L. I had a private iron panel done two months after initiating the Ferrous Fumarate, and my Transferrin Saturation was still outside of the optimal range (32%, "normal" range 20-50%), but all other iron panel assays were in range.
I am not in a financial position to run any private re-tests at this time, as much as I want to see all of my numbers. The NHS aren't interested in re-testing anything either, because I have a fibromyalgia diagnosis (and they use this to account for all of my existing and on-going complaints...). I wish I could get an FBC, U&E, Folate, Ferritin, Iron panel, TFT done right now, but I can't.
I will be having an LFT blood test in the next week or so, because Psychiatry have requested this before considering any new drug therapy (mood stabilisers), as I have previously experienced drug induced liver injury from prescribed drugs at therapeutic doses.
Rheumatoid Artheritis has been tested and ruled out (as have some other AI diseases via ANC and ANCA tests etc.) Diabetes has been ruled out multiple times (HBA1c is 32-33 over the long term). My thyroid Ab's have only been tested once (privately) on a full thyroid panel in April 2019.
I fully believe I could have Pernicious Anaemia, however I tested Intrinsic Factor negative, so the NHS have closed the door on that (even though they should treat me as Anti IF Ab Negative as per NICE guidelines). The best I have is "functional B12 deficiency", but that's purely based on a low serum B12 assay result, and a positive response in symptoms improvement (particularity nephropathy) from B12 injections. I now have to self-obtain and self-inject; another long story.
Considering all of the above, a case of underlying Hasi's seemed to make the most sense to me as my thyroid results fluctuate over time. I really only have long term data for TSH and FT4. TSH has varied between 1.64 and 5.74 over the last 18 months. FT4 has varied between 10.0 and 20.7). With higher TSH's, I have had lower FT4's. With lower TSH's, I have higher FT4's (which would make sense). I have no idea what any of the values are now though, having last been tested in April.
I went strictly gluten free as a trial for 6 months, discontinuing it only recently. I found it was of no benefit to any of my symptoms. I still struggle with IBS symptoms both with and without gluten in my diet. I cannot function without 2x Laxido sachets every day (missing just one sachet screws my bowels up for days). I've struggled with this for years, but it's become worse since my gallbladder was removed. I now don't seem to digest fat well at all, which apparently is supposed to make you have loose stool, however my problem is completely the opposite. I am also concerned about my on going weight loss, however I am fearful of talking to the GP about it because they now have a habit of using fibro or mental health issues as an excuse.
Are you strongly advising that I would be best not taking a MV&M at all?
Yes, mainly because of the iodine, but you don't want to take calcium or copper without getting tested, first. Multi-vits are always a bad idea. They are not conceived to help people with deficiencies. They are for the 'Worried Well', people who are not sick, but like to think they are doing something about their future health, but have no idea what they're actually doing. These companies make money out of people's gullibility and ignorance - no offence intended, there's nothing wrong with that, the people are not to blame, it's the companies that take advantage of them that are reprehensible.
Considering all of the above, a case of underlying Hasi's seemed to make the most sense to me as my thyroid results fluctuate over time.
Don't get me wrong. I'm not saying you don't have Hashi's. I'm just saying that those labs don't prove you do. Judging by your symptoms and the way the labs jump around, you probably do have it, but the NHS is not likely to give you a diagnosis of Hashi's at this particular time.
I went strictly gluten free as a trial for 6 months, discontinuing it only recently. I found it was of no benefit to any of my symptoms.
It doesn't help everyone. It did nothing for me. But, as you have IBS symptoms, have you tried going dairy-free, to see if that helps?
I cannot function without 2x Laxido sachets every day (missing just one sachet screws my bowels up for days).
I know the problem! Taking PPIs screwed up my bowels. Only just getting them sorted, 5 years later, by using vit C and magnesium citrate. Have you tried taking those?
I am also concerned about my on going weight loss,
That could be due to poor absorption of nutrients, due to low stomach acid - a common hypo problem. Do you know if you have low stomach acid?
I am fearful of talking to the GP about it because they now have a habit of using fibro or mental health issues as an excuse.
Yes, that's what they do. And, that's probably why they 'diagnosed' you with them in the first place, because it takes the onus off them to find out what's really wrong. Lazy-doctor tactics! So, I'm afraid that, like so many people, you are now pretty much on your own, with this.
Where to go next is the problem. But, I honestly don't believe that that multi-vit - or any multi-vit - is going to help you. And, with the iodine content, could be making you a lot worse. But, it would be good if you could get a good B complex to take while you're having B12 injections. You could, if you so wished, buy levo on-line and try that to see if it helps. Many people do do that when the NHS washes its hands of them. You just have to follow the rules for taking hormones: start low and work up slowly. Start with 50 mcg and increase by 25 mcg six weeks later, and see how you feel.
When taking B12 injections its recommended on here to also supplement a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
Many people can't process folic acid and need folate
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Many thanks for the links, I'll check them. Although, I have scoured the internet for hours looking for data on elevated TG Ab's before, so I may have already seen them. (Edit: Yep, I've seen them before, hence being of the believe that my elevated TG Ab's shows that *something* is going on, I just don't know what...)
Vit D and Folate last tested April 2019 (private). NHS have no intention of doing them again, and I cannot afford to retest at this time (long term unemployed due to disability).
Indeed, I am acutely aware of the recommendation to take a good B complex with the B12 injections, however due to financial constraints I have resorted to the aforementioned MV&M. I have previously tried several different B complexes and very carefully scrutinised their contents. I am aware that Folic Acid is likely doing me no favours, and that due to a number of negative MTHFR mutations identified on DNA tests I have had, I should ideally be avoiding Folic. I have previously excluded Folic from my diet and supplements and instead taken supplements containing Folinic Acid or organic Folate- however, it's the cost that's the problem, and now I am back on Folic in the MV&M.
I'm aware of the Biotin issue with tests and always ensure I discontinue for the recommended period of time prior to blood draws.
As per my above post, I have previously been borderline insufficient for vitamin D (52), self-prescribed loading doses, and raised my levels to 93.5 as of April 2019. I have no idea what they are at now though. I am in theory taking 10 ug of D3 daily in my current MV&M, although no idea what I am absorbing (especially given my worsening issues with digestion of fats since gallbladder removal).
I have never been screened for coeliac disease (NHS have no interest in doing so). I have experimented with strict GF diet for 6 months and recorded no improvement in symptoms. I am now eating gluten again as of a week or so ago, with no worsening of symptoms. So it appears I am not gluten intolerant.
I know, I know- I shouldn't be taking the MV&M. I *understand* the science. I have tried to make the right decisions and use the correct individual supplements, however I simply cannot afford it any longer and in desperation I resorted to the "least worst composition" MV&M that was affordable, justifying it as "better than taking nothing"- at least it contains some Folic Acid (!), D3, some B complexes, A, C etc.
Do you think I would be better off simply not taking the MV&M at all?
I really want to have a repeat iron panel inc. ferritin (the latter to complement my existing data for long term trending), however I cannot afford to do this privately. And the NHS... well, you know the story there by now...
Have I got Hasi's? Who knows... I think there is some evidence of this. Have I got Pernicious Anaemia? Again, there is some evidence of this- but it's not clear (i.e. I don't have a positive IF Ab result to confirm it, and NHS aren't interested in doing any other (invasive) tests).
I'm a bit stuck, and suffering, it feels somewhat unfairly.
I've just realised I was getting muddled - the type of tablets you were prescribed are much less common than the ferrous fumarate 210mg that many of us get prescribed.
The important thing for any iron supplement, no matter where it comes from or what it is made of, is how much elemental (or pure) iron it contains.
The maximum people should be prescribed is approx 200mg elemental iron per day.
The ferrous fumarate 322mg you were prescribed contains 100mg elemental iron per tablet, so taking one twice a day is correct. Apologies for getting mixed up and possibly causing a panic!
I notice that NHS advice on this supplement differs from the manufacturer's advice.
I'm going to delete part of my earlier post where I got it wrong so that I don't cause panic in anyone else taking what you were prescribed!
No worries! And yes my observations agree with everything you've said. I had 200 mg elemental Iron daily for 4 months, but my levels were not checked at the end. I checked them privately after approx 3 months treatment, and continued for approx a further month after the tests because my transferrin saturation was still well below optimal. Ferritin was back up to 107 by this point, having been 90 immediately prior to B12 loading doses, dropping to 30 after the 6 B12 loading doses (ferritin was tested about 4 weeks after last loading dose. My injections were incorrectly stopped after 6, later reinstated on 2 day frequency due to neuropathy). In theory, ferritin etc. should have continued to climb over the following month of treatment, however the levels were never tested again (and my NHS GP had no intention of doing so either). Unsure of reasoning.
I think that mid-range ferritin or just a smidgen over is a safe level to aim at. I wouldn't go any higher than that, personally. (I'm not a doctor or a nurse so anything I say should be taken with a pinch of salt.)
Edit : I wouldn't go higher than optimal on serum iron either.
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I would like to do something more proactive about this!
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