Hi everyone - if anyone can help advise I'd be very grateful.
My latest results are TSH 4.5, free T4 12, free T3 5.9 and 'wildly high' antibodies.
As background: I was first diagnosed with hypothyroidism 18 years ago (age 22) but no antibodies, TSH 126. Levothyroxine helped and I took it for years, but the dose was slowly whittled down until in the end, in my late 20s, I no longer had to take it. I fell pregnant when I was 37, still not taking any medication, and by the end of my pregnancy TSH was 3.4 but baby was fine thankfully as know this is a little high, then afterwards my TSH fell to 2.4. Unfortunately I had a very difficult time during childbirth and have had a form of trauma since although it's definitely been improving. A year and a half ago I was diagnosed with TSH of 7, I was put on levo again, only 25mg and then 50mg, at which point my TSH became 0.01, so reduced meds again, but then TSH rose back up to 3.5. As I was hoping to try for a second baby my GP said the aim was to get TSH sensibly beneath 2.5, but as we upped my dose gradually to 75mg about 10 weeks ago I became nauseous, then other GI symptoms followed which have left me in bed every day, my temperature fluctuates between 33.8 degrees and 36.8 degrees, I've lost weight (partially through feeling so sick but not enough to explain losing 10kg ie gone from 48kg to 38kg), I feel dreadful. I gradually whittled my levo down but felt so ill every time I took it (plus think I've developed lactose / dairy intolerance with whatever's going on) and with my GP's blessing we've temporarily suspended taking the levo, particularly as my latest blood tests now show free T3 of 5.9 which is at the high limit of the limits used by this particular lab. I feel so dreadful (weight loss, fatigue, nausea) every day. I just don't understand what is happening, and really what has been happening over the past 18 years in that one minute I don't have antibodies and eventually am no longer hypothyroid and on no meds, yet now I'm underactive with antibodies but highish T3. Sorry for the lengthy post but if anyone could help I would be grateful. I am also now under the care of a gastroenterologist due to my GI symptoms, waiting for biopsy results after endoscopy and got a CT scan lined up. I have also had a lump on the left side of my neck (for months), due to have ultrasound. Thank you for any help.
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HelsS
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HelsS, Welcome to the forum. It's thought that all autoimmune disease starts in the gut, so although you were antibody free 18 years ago something during that time has changed and autoimmune thyroid disease (Hashimoto's) is now attacking your thyroid.
It's unusual to have high FT3 and fluctuating/high TSH so I wonder whether you may also have high Graves antibodies. It's worth asking your GP to test thyroid receptor antibodies (TRab) as you may be hyper and hypo sometimes called Hashitoxicosis.
If the ultrasound shows the lump to be a hormone secreting nodule this may also affect your thyroid levels. Get the GP to chase up the ultrasound scan and ask for a referral to an endocrinologist.
Many autoimmune hypothyroid patients benefit from a gluten-free diet. Gluten irritates the gut lining causing digestive issues, constipation, diarrhoea and bloating and can make lymphocytes turn on the thyroid and attack it, raising antibodies.
Thank you for getting back to me, I really appreciate it. I'm talking to my GP later today and will mention the possibility of 'Hashitoxicosis' (which I had never heard of and I don't believe my GP will have done either given his confusion at my results!). As my GP said it's interesting that I suddenly became ill after increasing my levothyroxine, and certainly the idea of being almost hypo and hyper could fit. I'll request the TRab test too, thank you. I have an ultrasound appointment booked for 3 weeks time, and in the meantime I'll certainly try avoiding gluten, I had read a little about the links between Coeliac Disease and thyroid problems. My main problems at the moment, and for the past 10 weeks, have been GI related, but I'm so worried that I'll get put on steroids etc depending upon what my biopsy and CT scan results are. I really want to try and heal as naturally as possible through nutrition, meditation etc, I don't like taking levothyroxine as it is and I don't think it seems to be agreeing with me at all, I feel so ill after taking it which I never have in the past. Anyway thank you ever so much again, I shall also read the links you kindly sent.
Do you know what levo is? It isn't a drug as such, it is a hormone. T4. Synthetic, granted, but it doesn't alter the chemical make-up of your body, just replaces the hormone your body can no-longer make and you can't live without.
There is no way you can 'cure' any form of thyroid disease 'naturally', if by 'naturally' you mean by way of nutrition, meditation, etc. We'd all like to be able to do that! But it isn't a nutritional problem. Going gluten free many lower your antibodies but it isn't going to repair the damage to your thyroid that the antibodies have done. If your thyroid is damaged you are always going to be low on thyroid hormone, therefore, have to replace it by some means or other.
The only 'natural' way to do that, is by taking NDT - Natural Dessicated Thyroid - such as Armour or one of the many others on the market. This is make from dried pig's thyroid - 100% natural, but full of the hormones you need.
Antibodies are funny things. Their levels aren't constant. Therefore one test does not positively rule them out. It is perfectly possible that you had them at 22, they just didn't show up at the time of the test. Unless, of course, you have done something in the meantime like over-dosing on iodine, or something. But fluctuating antibodies would definately have an effect on your T3.
Going back to food, you could well have become dairy intolerent. Try illiminating it from your diet and see how you feel. Also, do you eat soy? Soy will have a very bad effect on your thyroid, so make sure you don't ingest any.
T4 only therapy makes a lot of people ill. It did me. I was far worse off when I started taking it than I was before. Before taking it I was just fat, after I was Jekyll and Hyde! Depressed, bald and homicidal! It takes us all in different ways. So, you would more than likely be better off on NDT. Or failing that, on T3 only, as I am. We're all different and have to do what's best for us, not what your doctor thinks is best. Also, aim for a suppressed TSH (although TSH is a terrible test and doesn't tell us much) because if the TSH isn't stimulating the thyroid, the antibodies tend to calm down a bit.
Hope you find some relief soon.
Hugs, Grey
PS The meditation might help you feel better, so might yoga, or massage, or reiki, or acupuncture, or whatever turns you on. But keep taking those hormones! OK? x
Thanks for getting back, really interesting that you had trouble with T4 too, I'll certainly push for other options eg NDT. I'm just worried though that my FT3 is elevated given my TSH is elevated, I know my GP hadn't come across it before but hopefully there's a reasonable explanation! I suppose I was hoping there was a chance to 'heal' naturally as in the past, for some reason, my thyroid had kicked back in and for 8 years I stopped all medication with no ill effects, and I'm certain as I've had 'trauma' (a form of) over the past 2-3 years this has no doubt affected everything.. but then there are all the hundreds of people (past sufferers, docs etc) claiming that you can possibly help yourself naturally (diet particularly).. I don't want to get suckered in but at the same time there seems to be some evidence at least of halting the 'autoimmune' element. Oh I don't know I'm confused!! Don't each much soy but thanks for mentioning as had no idea, just a little soy sauce on a stir fry once a week and the odd miso soup. Certainly seems to make sense that getting the TSH down could lower the antibodies, I just worry as I say about my T3 going higher still and getting hyper symptoms, nausea etc all over again, plus my weight loss has been like nothing I've ever experienced, I'm quite small to start with but so weird that I've lost so much weight yet supposedly hypo. Thanks again.. and will def be giving acupuncture a try, another thing I've heard some positives about.
Has your doctor investigated a possible problem with your pituitary? After all, it is the pituitary that secrets the TSH.
Actually, I don't think your thyroid did 'kick back in', I think you were on a Hashi's swing. What happens is, the anitibodies, through processes that I won't go into here, destroy part of the thyroid. That damaged portion is packed with hormone, which is all released into your blood. But once that's used up, you become hypo again, only more so because you have less thyroid than before.
These swings from hypo to hyper, through normal, and back again, can be of varying strengths and lengths. I have had Hashi's since I was a small child, judging by the symptoms, but I wasn't diagnosed until I was 55. During my life, I've had some short periods of somewhat hyper, when I lost tons of weight and my hair grew like the wild man of Borneo, some longer periods of almost normal when I slowly put all the weight on again and my hair fell out, and some bad periods of deep, dark out-and-out, depressing hypo. But in the end, you're going to end up hypo because nobody really knows how to get rid of the antibodies, even if they manage to thin them out a bit.
It's because of these various phases of Hashi's that people talk about 'curing' Hashi's and being able to come off their meds, etc. I knew one girl that said she did it with iodine, another with diet, but in the end, they all come crashing down and have to go back on their meds. Well, that's my experience, anyway. If someone knows of someone that actually has cured their Hashi's, I would like to hear about it. But it would take an awful lot to convince me, a detailed case history with lab results and everything! lol
Your high FT3 is a mystery. But then, so is Hashi's! I don't think anybody really understands it, it's so complicated. There are so many factors that come into play. Even so, the fact that you have that much in your blood, doesn't mean that it's getting into your cells. You can still be hypo even with a high FT3. Also, your doctors haven't done you any favours by upping and downing your dose like that due to your TSH. They are stressing your body, and stress is bad for... everything! Never allow your doctor to decrease your dose simply because your TSH is low. I would think - although I'm not medically qualified - the best thing you could do would be to try NDT - if you can get it - and see how that goes. Just a small dose to start with. Your body might accept the natural better than the synthetic.
Acupuncture is lovely, I love it and would have continued with it if my Chinese doctor hadn't Fallen off a ladder and retired. There's no-one else around where I live that I would trust.
And, by the way, soy sauce should be ok if it's good quality and well fermented. It's the unfermented soy that is bad. At least, unless your experience says otherwise! But if you do find that you do react badly to soy sauce, there is a coconut equivilent called something like coconut amino... can't remember at the moment. I haven't been able to try it - I react very badly to any form of soy - because it's always sold out! That's got to be a good sign, hasn't it? lol Oh, and coconut is very good for you!
Have been loving coconut for a while now, it's just great isn't it! I've got the oil and have bought some coconut flour but not progressed to actually using it yet.
Thanks for all the info, I had no idea you could swing between hyper and hypo but it makes sense given some of my symptoms, although I'm always on the underweight side interestingly, that's my norm though I always have been since little. To say I'm hypo for example I've been awake since 4am and up since 5am, wide awake, I've always been an early riser and not a big sleeper, so again a little more hyper than hypo although I guess genetic make-up (runs in my family!) and a whole host of things make you who you are.. but certainly the thyroid and pituitary and adrenals etc all play a huge part from what I've learned. Like most of us I'm sure I've been researching like mad, I think it's the only way, you have to arm yourself with knowledge as GPs etc only know so much! Getting the message across will be the next challenge! Thanks so much for mentioning the pituitary as well, I had researched adrenals a little but not pituitary and it's certainly something I'll mention to my GP. Really hoping he agrees with my request for NDT too.. I'd read a little about how the concern is that NDT comes from pigs or cows and therefore has different hormonal balance to humans, and that there's a risk of infection (?), but this has also been counteracted by others saying it's nonsense and a ploy by drug companies and others to get people on to levo (ie manufactured) as obviously it's cheaper for the NHS and rakes in a lot of money for the pharmaceutical companies. As I like 'natural' I'm all for trying it.
Gosh I can't believe you weren't diagnosed until 55, how awful, and how frustrating and difficult to have lived for years with ups and downs (and Borneo' hair! ).. really hope you're much better and enjoying life to the full now. Thanks again for having taken the time to reply to me, I do appreciate it, it's such a relief to have a network of help and fellows who understand the great thyroid mystery and medication battle!
You're right, Big Pharma will go to any length to discredit NDT. It's made from pigs, by the way. The cow one is usually OTC in the form of a glandular and one never knows the hormonal content!
What they don't want you to know is that NDT is just as highly controlled as the synthetic stuff - perhaps more so. There have been no recalls for NDT, as far as I know, but many many for synthetic T4.
I've heard doctors say, yes, but what if the pig your pills were made from was hypo? Well, they don't just take one pig, make a batch of tablets, then go on to the next pig!!! lol The thyroids are dried and ground and mixed together and the hormone content controlled before it's made into pills, so you get a mixture of different pigs.
I've never heard of anyone coming down with mad cow disease, or swine fever, or anything else due to taking NDT. That just doesn't happen.
As to the hormonal imbalance, that is largly irrelevant, because most of the T3 we use is made by conversion of T4, so it really doesn't matter if there's a bit more or less in the tablet you take. The body can usually compensâte for that with the T4 that is in it. Pig is the closest to human in many ways. It is also delicious! Poor thing.
Poor pigs.. they do get it rough sometimes! I must say it would feel quite strange to take 'pig gland'.. but if it works.. I can't be too hypocritical given I like a bacon sandwich occasionally too (gluten free bread from now on of course although the one loaf I tried was horrendously awful!).
Just had a CT scan to suss out my GI troubles, hopefully it shows something but not too much.. I'm still certain it's all linked really, I fell ill with everything within a day or two. I've actually avoided gluten for a couple of days now and all dairy for about a fortnight and there's no doubt there's an improvement, and interestingly we stopped (v gradually) my levo about 3 weeks ago (temporarily) and my nausea is just easing so I'm wondering if the high T3 could've exacerbated the nausea and GI probs.
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).. really hope you're much better and enjoying life to the full now. Thanks again for having taken the time to reply to me, I do appreciate it, it's such a relief to have a network of help and fellows who understand the great thyroid mystery and medication battle!
T3 taken away, looking for a new source please :)
Amount of Levo
Stopping T4 Levo and taking T3 only with Hashimoto's
