I’m so sorry and so ashamed I can’t get well,I don’t know where to turn anymore ,I’ve had M,E for 25 years and had my thyroid removed 10 years ago due to Graves’ disease ,I was put on 300 mg thyroxine and I was bedbound and how I coped I don’t know so for the last 7 years I’ve tried all the different NDTs and none have raised my levels ..ive spent thousands looking for help and hope and nothing has EVER given me a glimps of improvement,I reasearch and research in the hope I find help ,my husband has left me and I don’t blame him one bit,I’m either crying,asleep or take drugs as I can’t cope with the day,after day feeling so anxious and weak,my head can’t think straight ..my beautiful daughter is so poorly with fibromyalgia,severe mental health and is transgender..and we just cry all the time because we feel so ill.ive done the mitochondria test twice and then took all the suggested supplements for 2 years,nothing!! I had a lot of tests done for malabsorption and it was all clear i had positive celiacs antibodies but a negative biopsy .i have taken up too 6 grains of thyroid s for 9 months and still my t4 and t3 are low.( see results attached) .I fought for 2 years with the help of a lovely endocrinologist who could see what tourture my life was to get a trial of T3 to add too my NDT ,he’s sadly now left and I see an endocrinologist who raises his voice at me. I’ve added t3 since January but still nothing,if not worse,I’ve gradually upped it too 30 mg spread out through the day with my 3 grains of thyroid s and Im bedbound and so anxious and wake at 3-4 am shaking and dreading the day ahead..I went to hospital 3 times and had to take 700mg of thyroxine then bloods every half hour for 5 hours to see if I absorbed thyroxine and it didn’t rise...the endocrinologist scares me ,because every time I go I’m crying with desperation and he just opens the door to get me out..and I just apologise and feel ashamed..I read so much that NDT changed peoples lives and T3 saved them,why not me ? The endocrinologist said my mental health had nothing to do with having no thyroid and below range results and he said I needed to be in the mental health team so I was with them for 2 years and they said I was obsessed with my thyroid because I keep all my results and search for help,I never missed one appointment because I want to get well,even if I had to pay for a taxi because I was too weak and Ill to drive.I attended every course they suggested for me which was so hard as I can’t even wash for weeks because I’m so fatigued and I’ll and I can’t think or comprehend information,they then discharged me,saying my physical health was impacting on my mental health and there’s nothing more they can do for me..but I’ve made an appointment with my dr to be re-refered because I’m so low ,I wake at 3 every morning so anxious and every minute feels like an hour,I’m lonely,scared and lost.😢I don’t think there’s an answer for me ,I feel mentally unstable,but when I have a brighter day I can shine and I help the homeless and addicts which I’m trained in ,,I don’t eat gluten,I inject b12 My ferritin is 74..and my last blood results which I was taking 3 grains of thyroid s and 20 mg T3 was..( see below) I don’t go too the toilet for 7-10 days and the dr said that’s just some people’s normal,I have to use a water enema every other day which has little effect.
T3...3.6...3.10...6.80
T4...6.9.....12.00..22.00
Tsh0.02...0.27...4.20...my tsh has always been suppressed no matter what I’m on...
I’m scared the T3 will be taken off of me when I see him because I’m so jittery and anxious again and I won’t get it back and I know I desperately need it as my levels are so low ,but I think because my adrenal results are so high the t3 is making me worse...he said it’s expensive and said I’m lucky to be given a trial at all,I am grateful just so lost and scared and embarrassed I can’t get well.
The photo I’ve attached are my results after 9 months on 6 grains and I felt hideous ..
I then did a saliva test which was very high so I’ve been taking holy basil and ashwaganda for two moths but I don’t feel any calmer at all...where is all the T 4 going that I’m taking ? nothing’s making sense ,I’ve spent £3000 over the last 9 months with a natrapath ,she’s done the mitochondria test,drips,various tests ect,and it’s not helped and I’m on benefits so had to go without essentials to pay for her and sell things my late nan left me .I’m now paying for my daughter to see her aswell so I’m going to have to sell my car...but I need to know what’s happening to me and why nothings working ..
The next results are going from 31/2 grains up too 4 1/2 and the levels drop instead of going up.
3 1/2 grains for 8 weeks..T3 3.7..T4. 13.3
4 grains. For 8 weeks...T3..3.1...T4 12.2
4 1/2 grains for 8 weeks...T3..2.9...T4..9.9
I can’t attach another photo of my saliva test but I posted it the other day...there’s probably nothing anyone can say or make sense of ,but I just needed to write it out in a safe place.😢 I’ve had a private test to see if I have reverse T3 and I don’t have it..and I don’t have the faulty gene,I’ve just had the 24 hour urine test and that too was low ,but nobody knows what to do and I can’t go on like this for years on end..😢
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Tanyaking
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The commentary in the results suggests a pituitary problem should be excluded. On what basis were you diagnosed with Graves disease? Can you look back over your results and check which antibodies were tested? If you had Graves disease you should have had elevated TRAB and TSI antibodies and this should be in your records. It wouldn't be the first time someone was mis-diagnosed - not saying you have been but you won't know until you get a copy of all your blood test results.
If you had Graves you will still have the antibodies because they don't vanish. I'm very sorry you've been so ill and no help forthcoming.
The people who do the blood testing wrote that bit after 7 years of doing my bloods . I do have a prolactinoma which is controlled with cabergolene..my thyroid levels were never very high and I don’t think I had the antibodies test back then,I did post some antibody results the other day and some people said I had hashimotos,I paid someone to help me understand that bit because I couldn’t cope with not knowing and having both diseases..she said the thyroglobulin was the Graves’ disease stil present .
Thyroglobulin does not confirm Graves disease. Antithyroglobulin antibodies can be present in Hashimotos and other conditions. Graves disease is confirmed by TRAB and TSI antibodies. Graves antibodies don't vanish with thyroidectomy. Thyroglobulin is not the diagnostic marker for Graves disease.
If you do not have TRAB and TSI antibodies and you DO have elevated TPO and TgAb antibodies then you've got Hashimotos. but you need a full picture of your antibodies to confirm this. Hashimotos can cause a low TSH and so can pituitary problems.
In any case, you are where you are now and the problem is what to do now to help you regain your health. If you have a prolactinoma, is it being effectively treated, I don't know anything about how the pituitary gland functions when this is the case. Could it be affecting your FT3 levels?
I've just had a look at your previous antibodies results and you have got TgAb antibodies but your TPO is not high enough to diagnose Hashimotos thyroiditis so the TgAb could be associated to another condition.
I wonder if your thyroid condition is related to pituitary function rather than either Graves disease or Hashimotos? Could it be secondary hypothyroidism plain and simple? However, the raised TgAb needs exploring and could be related to another condition as yet undiagnosed. Have you checked B12 levels and excluded other conditions that could cause a raised TgAb?
Yes I’ve had the prolactinoma for 25 years and it’s well controlled and scared every 5 years and it’s now tiny...my b12 is over range be cause I supplement it..the natrapath lady said the antibodies are due too the Graves’ disease still present.
Did the naturopath check your TRAB and TSI antibodies for Graves disease? It sounds like she's making assumptions about the reason for TgAb antibodies being present as they are not diagnostic for Graves disease.
The Graves antibodies TSI and TRAB do not vanish with thyroidectomy whereas TPO antibodies for Hashimotos will disappear once there is no thyroid tissue available. At least that's my non medical understanding. You will note in the information below that TgAb is not listed as diagnostic for Graves disease.
'The TSI test measures the level of thyroid-stimulating immunoglobulin (TSI) in your blood. High levels of TSI in the blood can indicate the presence of Graves' disease, which is an autoimmune disorder that affects the thyroid gland.' healthline.com/health/tsi
Japan have produced clear and simple guidelines for diagnosis of Graves disease. Thyroid Stimulating antibody is what we call TSI (Thyroid stimulating Imunoglobulin). japanthyroid.jp/en/guidelin...
Guidelines for the Diagnosis of Graves' Disease
Findings
a）
Clinical findings
1．Signs of thyrotoxicosis such as tachycardia, weight loss, finger tremor, and sweating.
Dear Tanya, I have a suggestion but first of all I am so sorry for you, you are struggling with so much and being very brave.
I too was diagnosed with ME but no longer believe I ever had it. I was on Levothyroxine, going down hill. Now on T3 but didn't feel good until, just a few days ago, when I began taking something I've never found before, a B Complex that has all the B vitamins in the right amount, ie 100% of the daily requirement of all of them. Most vitamin B complexes have over 100% of the cheap B vitamins and under 100% of the expensive ones.
This could be very relevant to you. My B12 results were also too high.
When one (or more) of the B vitamins is too high, that messes up our bodies use of the others.
Not sure where to start but a properly functioning thyroid gland (or, in your case correct replacement of the thyroid hormones) is necessary for B12 absorption, so, until your thyroid hormones are right you may have trouble absorbing the B12, which will leave you feeling tired etc.
Vitamin D is needed for B12 absorption and D needs B5.
B5 is Pantothenic acid which is a component of coenzyme A (CoA),which plays a critical role in the utilization of fats and carbohydrates in energy production, as well as in the manufacture of adrenal hormones and red blood cells.
So, if your B vitamins are not in balance this could be upsetting your adrenals and, according to Dr P until your adrenals are okay again your body will not be able to respond to the thyroid hormones replacement.
I don't understand adrenals well enough to comment but Dr P's book explains, though I think someone on here will probably explain well without buying the whole book.
I am assuming that you already know about needing vitamin D, B12, folate and ferritin (better check I have those right) to be above mid-range, that we need sufficient zinc (often low if hypothyroid) magnesium and selenium and that we must leave 4 hours between taking thyroid meds and taking magnesium, iron and vitamin D. After taking T4 (levothyroxine) we must leave one hour before eating or drinking eg tea/coffee. We must leave one hour either side of T3. Dr P says coffee interferes.
Yes, low thyroid can and does cause mental health problems (myxoedema if you want to look it up)
I am not medically qualified nor an expert but I do understand a fair bit about vitamins. Please take care with naturopaths, I lived next door to and knew very, very well a couple who ran a centre and they knew little and often made people worse, not intentionally but through their misplaced confidence in their own ability.
Just one last thing, and I know this is not at all easy when you are in the situation you are in, but take every opportunity to relax, not just to relax your body but also your mind. For instance, say to yourself "I have coped up to now I will continue to cope" and "In this moment all is well even though I don't feel well" and, as I did when the ME (though I think actually thyroid) made me collapse completely "I am so lucky to have a soft bed to lie on and a house to live in rather than living in a war zone or starving". I'm not advocating 'silver lining', but thoughts that soothe, self-soothing is really valuable in changing the messages your mind sends to your brain which then communicate them on to your body.
We, on here, care very much about you and are glad to listen and, when we can to offer suggestions. I know it's hard when you are so fatigued and then feel time-pressured, but love yourself as much as you can, be kind to yourself, in your mind say only kind loving things to yourself.
Im so sorry your going through this I can only imagine your desperation. It sounds like everyones worst nightmare ☹️ Unfortunately I don't have any advice but your post moved me so much that I just wanted to send you a big hug 🤗 Hopefully someone with more experience can help you. Please don't give up hope.
Anyone who has the results you have and the long-drawn-out illness with no favourable outcome 'yet' and no doctor knowledgeable enough to treat you till you reach reasonable health and symptom-free will struggle.
You could have something called 'Thyroid Hormone Resistance' which means your body can only cope with being provided with the only Active thyroid hormone i.e T3 (or liothyronine). People who have this condition need to take an amount of T3 hormones that would knock others off their feet.
Due to you taking NDT the blood tests are irrelevant in a kind of way because the blood tests were introduced along with levothyroxine - which is T4 only. Therefore if we add in T3 or take NDT the dose should be based upon how the patient 'feels' with small increments added to the original dose until the patient is symptom-free. If someone cannot convert T4 to T3 it's not much use. (I am not medically qualified) but have - like many on the forum - struggled by being told that levo is all that is prescribed.
Ask if you can be given a trial of T3 alone. This doesn't need conversion and sometimes - being hypo - our stomach can be troublesome - usually because we may have 'low stomach acid' due to our condition which means our food isn't dissolved adequately. Many substitue with acid providig tablets i.e. Betaine with Pepsin or some such tablet.
When I tried upping the T3 by 5 mcg I felt so anxious and more distraught,I posted my saliva test the other day and it’s over range at all points,could this be why I can’t tolorate too much T3 at the moment?
I am not sure at all and Dr Lowe has died who was the expert in Thyroid Hormone Resistance. He himself was and had to take 145mcg of T3 every day in order to function (he took his in the middle of the night).
I’m so sorry to hear of your plight- it sounds horrendous
I would def chase up all your initial blood tests too and maybe push for pituitary scans also?
It does sound odd that your t4 is so low despite high doses but I don’t have any other specific answers for you.
Try to hold on to the positives as much as you can and feel free to air your views here in a safe place as you said. Sometimes that can be jsut as comforting xx
I don't see how a pituitary problem would cause your FT3 not to rise. The pituitary secretes TSH. And it wouldn't make any difference if your TSH were higher, because you don't now have a thyroid to stimulate. Did the person who wrote that comment know that you had had your thyroid removed and that you were taking NDT? If they didn't, then that comment is logical. But if they did know, it makes no sense.
Your low TSH is probably due to you having had Grave's. In a lot of Grave's people the TSH will never rise, no matter how low their Frees because having Grave's lowers their set point. Besides, the TSH is not the problem, here. Neither is the FT4. That is likely to be low when taking T3.
No, the problem is the FT3 itself. Why isn't it rising? So, you're taking 3 grains at the moment, plus 20 mcg T3. Well, that's not an enormous dose of T3. It's only about 33 mcg. Some people need a lot more than that. And about 114 mcg T4. The thing is, having had Grave's, your body got used to very high levels of T4 and T3. What you're giving it now is just a drop in the ocean of what it was used to. And nothing is going to help if you don't take enough of it.
Do you have any labs from when you were on 300 mcg levo only? It would be interesting to see how well you convert.
You say you've had a lot of tests for malabsorption. Do you know exactly what they tested? Did you have your stomach acid tested, for example?
And, just as a matter of interest, how do you take your NDT? Do you take it on an empty stomach and wait at least and hour to eat or drink anything other than water? Do you take any other medication or supplements at the same time? Where your tests all done at the same time of day and fasting? Silly questions, perhaps, but all the little details count, and best to eliminate them straight off.
I'm sure there is an answer for you out there, but it might take a bit of digging to find it. As for your high cortisol, have you ever tried taking zinc? Zinc can lower high cortisol, and hypos are usually rather low on zinc. Worth a try.
Thank you so much for you’re thorough reply,it made me cry that people care and there hope xx.ill answered everything you’ve pinpointed for me..
The lab man that did the bloods at the hospital doesn’t know anything about me..
When you say I’m on 33 mcg of T 3,I thought there was 9 mcg in each grain plus the additional 20 I take which would be 47mcg and am I wrong in thinking T3 is three more times it’s strength?
My result on 300 mcg thyroxine was.(8 years ago ).T3...3.8—3.0—6.2
T4...18.7.....12.0....22.0
TSH..0.2....0.4—-4.0
Does this look like I don’t convert well greygoose?
My tummy tests were biopsies both ends ,SIBO,stomach acids,stool tests.i had positive antibodies forms celiac but negative biopsy.
I take my NDT well away from iron and always on an empty tummy..
Yes I did have a zinc deficiency,but I supplement now .x
The lab man that did the bloods at the hospital doesn’t know anything about me..
OK, so his remark about the pituitary was logical and surprisingly intelligent. But, it doesn't apply in your case.
When you say I’m on 33 mcg of T 3,I thought there was 9 mcg in each grain
Yes, you're right. I'm sorry, I don't quite know where I got my numbers from. It was late last night. 47 mcg, you're right.
am I wrong in thinking T3 is three more times it’s strength?
That's what some people say, but it can only be a rough guesstimate and vary from person to person. If you can't convert T4 to T3, then the question is redundant. And, for it to have any strength at all, you have to absorb it first. So, that's not your problem, at the moment.
No, you don't convert well, it's true. So, maybe NDT isn't the right thyroid hormone replacement for you. Too much T4. But, you would have to be able to absorb it for us to know.
My tummy tests were biopsies both ends ,SIBO,stomach acids,stool tests.i had positive antibodies forms celiac but negative biopsy.
And none of those tests showed up any problems? Not even the stomach acid? Now that would be surprising, because hypos usually have low stomach acid. It would be surprising if you didn't. And, no sign of leaky gut?
Have you tried going gluten-free, to see if it helps? What have you been doing to try to improve absorption?
Have you had your vit D, vit B12, folate and ferritin tested?
What I suggest you do next, is read this article, and try the home stomach acid test yourself. I not only don't trust medical tests, but also mistrust doctors' abilities to correctly interpret them!
Thank you..just got the tests out and tummy acid wasn’t tested so I’ll read the link you’ve given me..
Yes I don’t eat gluten,I had positive antibodies but a negative biopsy so they said I didn’t have celiacs disease ,but I stick to it to try and help myself.
I inject b12 and supplement folate,and I supplement iron to keep it at around 70-100.
From the results I wrote when on 300 mcg thyroxine are you saying I don’t convert well?
Can low thyroid levels cause severe mental health greygoose? Maybe I’m just mentally unstable and shouldn’t focus on my thyroid after all these years of desperately searching for answers .
OK, so that's good to know. Take the self test and see how your react. I'm pretty sure you must have low stomach acid, and the low nutrients bear that out. Have you been tested for Pernicious Anemia? How about Vit D? Has that been tested?
Even if you don't have Coeliac, you could still be sensitive to gluten. Did going gluten-free make you feel any better?
Are you taking folate or folic acid? As you're having B12 injections, it might be a better idea to take a B complex containing 400 mcg methylfolate. Igennus do a good one, and you can find it on Amazon. That will also support your B12 between shots.
According to your results on 300 mcg, you are a poor converter. Your FT4 is well over mid-range, but your FT3 is at the bottom of its range. That indicates poor conversion.
Low T3 can - and usually does - cause severe mental health problems, yes. The brain uses a lot of T3, but it prefers to convert it from T4 in situ, as it were. And you have neither adequate T4 levels, nor adequate T3 levels for your brain to functions correctly. So, all sorts of problems can arise : anxiety, depression, paranoia, bi-polar-like symptoms, dyslexia, to name but a few. I very much doubt you are mentally unstable. And, the reason they make a song and dance about you focussing on your thyroid is that you are asking questions they cannot answer. They would prefer to shut you up to preserve their image of all-seeing, all-knowing medical professionals. When in reality, they are totally out of their depth. Ignore them and continue your quest for good health - which lies in adequate thyroid hormone levels.
I’ll start the 3 day test tomorrow Morning for low tummy acid..will Dr oetker gluten free backing powder be ok?
No I haven’t noticed any different at all from being gluten free for a few years ,but I’m sticking to it.
Yes I take lamberts methyl b complex as I’m doing the b12 injections..I don’t feel any benefit from these either.
Thank you for reassuring me about my mental health ,and that low thyroid can cause such tourture ,it’s scary and they just keep saying I’m complex ,which then makes me apologise and feel ashamed I’m not responding too treatment.😢
It should be ok. It's not the gluten that makes you burb! lol
Do not be ashamed, and do not apologise. None of this is your fault. And you're not complex, they're just ignorant and incapable of joining up the dots. They know very, very little about thyroid, or hormones in general. They know nothing about nutrients. They don't know what the symptoms are and they have little idea about treatments or reading blood test results. Sometimes people get well through sheer good luck, despite their bungling. But, as soon as something gets a little more difficult, they throw up their hands in horror and start blaming the patient. Keep your head high and don't let them get to you. Treat them with the distain they deserve. Polite but aloof. It's their job to make you well - the job they get damned well paid for - and they're not capable of doing it. They are the ones that should be ashamed!
I continued to suffer severe mental health problems (agoraphobia, suicidal thoughts, definite PTSD, etc) even though my thyroid levels were optimal. I now have my own theory on this..... (bear with me). My family on both sides, mother & father, never had heart disease, cancer etc; they tended to suffer mental health stuff, anything from anxiety through to schizophrenia. Therefore that is in my genetic makeup. I've obviously inherited it, and it wasn't totally connected to my thyroid, but more to poor nutrition, going downhill over decades from low thyroid, and I had a predisposition to mental health symptoms.
Can you pinpoint mental health problems in your family, even going back to grandparents?
I wrote a reply at a stupid hour last night, and explained how I sorted out my lingering mental health symptoms. The AIP Diet was crucial. Then the supplements ... particularly the vitamins/minerals which impact on the nervous system... *High Dose* Multi B's - would recommend Nature's Best B50. naturesbest.co.uk/vitamin-b...
Also 10,000 IU vitamin D. Unfortunately Nature's Best don't sell a high enough dose. Also Omega 3 or Cod Liver Oil capsules
I have read the article you kindly gave me and I’ve done the 3 day baking soda test ,and I didn’t burp until about 20 minutes of drinking it,and then it was a small burp..what should I do now? I’m ever so grateful of you’re wisdom and you’re willingness too share it..thank you .
greygoose GREAT advice as Always . Zinc lowers cortisol and many take it before bed . I found that supporting my adrenals helped me very much with T3 . Vitamin "C" B-Complex Sea Salt and lots of Relaxation and Lots of TLC .
Hi Tanyaking I'm still awake at a stupid hour. My heart goes out to you, I went decades in the most dreadful state and no doctor seemed to have any idea what to do with me. My mental health was horrendous for 35 years. I will tell you - I am in the best health I have been in since my teens. So it can be done. It was this amazing forum that got me better. They gave me the knowledge & confidence to sort out 35 years of S**t .
I haven't had my thyroid gland out, but I was so confused as my health was not improving, that I demanded a pituitary scan. The result was that it was ok.
My massive turning point came when I did the AIP (auto immune protocol/paleo) Diet. Every day I am reading about the new scientific research that points to most illnesses (particularly auto immune, but others too) being caused by our gut being in a bad state. Antibiotics, stress, trauma, vaccinations, poor diet, foods that our body finds difficulty digesting, etc etc, all go towards a gut in a mess. Izabella Wentz is a whizz on all things auto immune/thyroid & this is a link to the AIP diet on her website. thyroidpharmacist.com/artic...
It's actually easy to stick to as it calms your body down... that's what I found. Making the bone broth is just a matter of getting the bones from the butcher, plus veg, boiling them up together. You can google How to make Bone Broth.
You are still taking both T4 and T3 thyroid replacement. It may the case that you can't convert the T4 into the usable thyroid hormone T3. Therefore you are on a low dose of T3. I was extremely ill until I upped my T3 dose to 40mcg a day (without any T4).
Also your folate, ferritin, vitamin D and B12 levels are vital. Until I added daily doses of zinc picolinate, selenium (which assists thyroid function), high dose multi B vitamins (which includes B12, & all B vitamins work on the nervous system), 10,000 IU of Vitamin D a day, also 1,000mg of vitamin C I felt less than human. After a few months I eased off such high doses.
In fact there was an excellent tv programme on Wednesday evening - ch.4 Live well for Longer... which explained all about our gut biome/bacteria; and the majority of our immune system is in the gut. Well worth a watch.... channel4.com/programmes/liv...
Keep on asking questions on here, and try to learn what has improved other members' health. Good luck x
I've had ME for all my life. I can't add much to the thyroid advice already given, but can confirm that gut health is paramount. Diet is important, and taking probiotics essential IMHO. Water Kefir is easy to make, but add other strains of probiotic too. Sauerkraut, ie fermented cabbage, carrot etc, and a good probiotic supplement containing other strains make for a balanced approach.
I find B12 injections beneficial despite being told that I didn't need them. But it wasn't until I started the probiotics that I really started to feel well. And I don't know if I would have coped for so long without my meditation.
PA/B12 deficiency is often misdiagnosed as ME as one of the symptoms is crippling fatigue, etc. and this plus other symptoms can build up subtly over many years. B12 deficiency is common but quite complex. One of the causes is low stomach acid. Stomach acid is vital for the first stage in releasing B12 from protein before combining with Intrinisic Factor to enable absorption.
PA/B12 def. often runs in families and coexists with thyroid disease. Don't be tempted to supplement before testing as this will make it more difficult to get the right treatment.
Get WATER Kefir grains from: kefirshop.co.uk/shop.html
Get Unrefined cane sugar from a supermarket. Type/colour of sugar isn’t important.
Get a jar of Black Molasses from Holland and Barratt.
Get six beer brewing bottles from Wilko (you order online and then collect at your nearest store).
wilko.com/en-uk/wilko-swing...
You will need a source of water that has no chlorine or fluorine in it. I bought a water filter for this job. I use one from
wrekinwatersofteners.co.uk/...
the one at the top of the page. Their web site is safe, and they are very good to deal with.
INSTRUCTIONS
Make a sugar-water solution by placing six tablespoons of the sugar (I use those plastic measuring spoons), and ½ teaspoon of the molasses in a Pyrex jug, and add 250 ml of boiling water. Stir until sugar is dissolved, add water to make up 500 ml (half a litre). Leave to cool to around body temperature.
Place the sugar-water in a suitable sized Kilner jar, and add two tablespoons of the grains. Stir with a non-metallic spoon. Cover the jar with a cloth secured by a rubber band.
Leave for 36-48 hours at room temperature, in a dark place.
Put a PLASTIC (or other non-metallic) sieve over a non-metallic jug or bowl, and pour the contents of the Kilner jar into the sieve.
Make up another jug of sugar-water, and when cooled, put it into the (cleaned) Kilner jar, add two tablespoons of the grains in the sieve, and start the next batch.
Throw the remaining grains away, or give them to a friend.
Take a bottle and use a small funnel to pour the Kefir liquid into it. Put on the stopper, and clip it it in place, Put that bottle somewhere at room temperature for 36-48 hours.
If you want the Kefir to have more fizz, add a half teaspoon of the sugar.
I like this variation: Before poring the liquid into the bottle add a shot glass (50 ml) of pure apple juice, and 50 ml of a sugar solution made from a mug of boiling water with one tablespoon of the sugar dissolved in it. Keep the sugar water in a jar in the fridge for the next batches.
BE VERY CAREFUL OPENING THESE BOTTLES AS THEY WILL FIZZ UP, AND ALMOST EXPLODE OUT OF THE BOTTLE. Release the clip and allow a tiny amount of pressure out of the bottle until it is low enough to remove the stopper completely.
If you need to take a break from the Kefir making, place the jar in the fridge for up to a week. When you take it out, discard the liquid, and start another batch as above.
Drink no about 50 ml of the Kefir a day until you get used to it. I can find no information anywhere about how much it is safe to drink. Some people say they let their kids drink it instead of pop, but it is a diuretic, and I find that I can’t be too greedy with it, despite loving it as a drink.
I now supply six people with Kefir, and they all swear by it. Last winter I had no colds of flu for the first time in my life (I am nearly 68). It is not the answer to all health problems on its own, but it is important.
In addition to the Kefir, I take a probiotic supplement. It is from Nu U Nutrition, and called ‘Bio-Cultures Complex’. I get it through Ebay.
Also go to You Tube and enter ‘making fermented vegetables’ in the search box. Take your pick from the many recipes for fermented vegetables. I didn’t think that I would like these, but they are quite nice, and the longer you keep them in the fridge, the better they taste. Cabbage and carrot make lovely ‘extras’ to add to a meal.
To understand the importance of gut health, consider this. There are more bacteria in your gut than there are cells in your body. Technically, this makes us parasites, living on a colony of bacteria. If that bacteria is ‘bad’ then how can we hope to have good health? Probiotics, and a healthy diet, will get your gut in much better condition. Modern diets, antibiotics, and modern medicine have ruined our gut health. Even so-called healthy people have poor gut health.
Would agree with marigold22 about importance of gluten free diet and getting supplements at optimal levels
If you have low stomach acid then poor absorption of thyroid hormones is likely. Would agree with greygoose that your results show you need higher dose
But I’ve taken 6 grains before for months and still my levels were low and I was so poorly,or do you mean I need more T3 ? With my cortisol so high I’m struggling with the T3 ,can that happen and how do I treat it?
You certainly could have problems with pituitary output of other hormones owing to reduction of other hormone production by the pituitary gland (hypopituitarism) as a result of tumor pressure. In which case, TSH production could be suppressed indirectly. Therefore TSH is of no use in diagnosis and raising your FT3/FT4 is the chief aim. Higher dosage seems the best way forward.
Hi, i think you feel bad because your ft4 is low. Almost everytime that happens on ndt . Why don't you try to raise your ft4 to add some levothyroxine. The best levo I know is Tirosint(filler free from better absortion).
You need good values for both hormones to feel better, and reverse T3 must be under <20. In ndt is not the same report T4/T3 as in the human, in pig thyroid T4 is much lower than in human thyroid, so you need to add some levo to make up the difference. I think you will need add levo and drop the ndt dose.
But I don’t convert thyroxine ..and I was on 6 grains of NDT for 9 months with low T4 and in 6 grains there would have been plenty of T4 ..does that make sense?
I don’t know what to say to help but please know you’re not alone. There are many people on here who will give valuable help and advice. Sending you a massive hug!! Xxx💖💕💖💐
Wow! Iam so sorry that u are so ill. I have graves disease and have had it for 21 years. Thyroid is the engine to your body. Graves disease affects you mentally so dont ever think that you are crazy because you are not. All of your symptoms are real!! We are here on this forum to help you thru this. There are alot of great people on this forum. I will keep you and your daughter in my prayers. I went thru alot of emotions to thats normal with graves. I pray that u find a doctor to help get you on the right track.
I'm not sure what advice I can give as I'm in quite the state myself, unable to work, getting more and more sick and ever searching for answers to get well. Your post touched me and I just wanted to send you some love and support your way <3 Are you also dairy and soy free? Have you tried eradicating sugar from your diet. I know it isn't always the be all and end all but it can be for some. X
I too have Graves Disease and underwent RAI thyroid ablation in 2005.
My story is very different from yours but what we have in common is this website and the fact that we are both looking for answers and feel " failed " by the medical profession.
There is a book, Graves Disease - A Practical Guide written by an Elaine Moore, who has the condition. There is also a very comprehensive website under her name. It is an American book so there are some differences regarding treatment options but it might
just throw some light into an otherwise darkened corner.
Every case of Graves Disease takes it's own path - and you will be the owner/manager.
Graves is for life, the thyroid was it's victim and not the cause of this disease.
It is an autoimmune stress and anxiety related disease.
Obviously, without optimum thyroid replacement you will be unable to be all things to all people, as you alluded to in your post. If you can, try and take some " time out " for you - without feeling guilty ? I know, it's difficult - it's the Graves talking !!
You have been brave in writing your story, you have nothing to be ashamed of and nothing to apologise for - maybe the doctors who have " treated you " should look to themselves .
There are some wonderful, knowledgeable people on this site.
I'm still on my learning curve, but am better placed than this time last year -
Please be kind to yourself, I know, that's hard to do. I hope just having opened up with
your story will have helped " unbottle " those pent up frustrations, anger and upset.
You are not mentally ill Tanya! You're suffering and you don't know what to do for the best. I marvel at the wonderful advice given on this forum. Expert knowledge. I hope you find the right solutions to your problems. So sorry for all you're going through xx
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I can only imagine your desperation. It sounds like everyones worst nightmare ☹️ Unfortunately I don't have any advice but your post moved me so much that I just wanted to send you a big hug 🤗 Hopefully someone with more experience can help you. Please don't give up hope. 
never loose hope upping NDT!!
fainting every time I’m ill
drained of energy
Feel so Disappointed I’m back on Levo 
I’m seeking advice re interpreting my results and dosing T3 medication. 
