I've not posted on a long while, I've gone from taking 175mg thyroxine tablet that caused issues as I can't have dairy. I did see an endo and she was rude and not helpful. She said I was obese and that was my underlying cause for most my issues. She also said my cortisol levels would be normal as only slim people get this problem.
So I I'm over weight a bit but I suffer from stomach problems acid reflux and abdominal cramps now classed as ibs. I've been rushed into a&e several times over the years for thought allergies that were never found. Anyway had blood test and my cortisol was low so that's probably why I'm half asleep all the time. The short test I had did increase it so apparently I'm ok now. Hmm I don't see how.
Anyway I take liquid thyroxine now after lots of stress and fighting with gps and it did help the energy levels to start with but now I'm not better energy wise. It's burning my stomach so much and I fear it's damaging it and my intestinal tract. It's full of rubbish and nasty chemicals.
I wonder any other options?
I'm low in mood have bowel problems nearly every day. So tired even with good diet and vit b 12 intake, iron and vit d.
I'm also waiting for my gallbladder out.
I'm feeling pretty fed up as no one takes me seriously and says it's stress and being obese. I've pains in my neck, legs etc and all around falling apart. I'm 35, have a job were I'm walking 7hrs a day and eat healthy.
Help.
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Cheekycharlie1981
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It's very strenuous trying to get the medical profession to try and take serious the patients complaints. Instead patients get blamed for their conditions i.e. overweight. fatigue, pain.
I just wonder if you were treated well with an optimum dose or T3 added to T4 would you not have developed other conditions? I am not medically qualified but I would think so.
You cannot take medication which burns your stomach. It must be painful too. Ask doctor if she would add some T3 to ordinary levo on a trial basis for 12 weeks to see if that would help you.
You will also have to take charge in some way about how to recover your health.
By reading the above two links you will be far ahead in knowledge than either Endo or GP.
I used to take the tablets but I felt rubbish on them and they have lactose in them which I don't tolerate very well hence the change to liquid.
Back in the day the tablets by teva had no dairy and now all UK brands do.
I'm fed up of feeling ill all the time and I know my adrenal gland is not functioning correctly and I don't believe the thyroxine helps me.
Never taken t3. My gp surgery is shocking one problem per appointment so if I start on about different things I'm soon told to be quite. It's frustrating as hell.
I'll read the links, but feel hopeless really.
If I could go back to when I was 22 and 1st given levothyroxine I'd scream no read up on the facts first.
Mercury Pharma T3 which is the only UK licensed T3 contains lactose. It's unlikely it will be prescribed to new patients anyway due to the extortionate cost.
Re cortisol, I was told I was too slim to have an adrenal issue. Go figure!
What a nasty, ignorant person that endo was! Doesn't it make you want to whip our your machine gun and gun them down! Being an endo, she should know that your weight gain is more than likely due to your low thyroid - as are your other symptoms, not the other way round! And she should have made sure you were adequately medicated! Endocrinology seems to attract some pretty awful people!
Anyway, you probably have low stomach acid, causing a lot of your stomach problems - another symptom of low thyroid. Have you tried correcting that? Have you tried taking vit C with your levo, to protect your stomach?
I thought the point of liquid levo was that it didn't have lots of horrible chemicals in it.
It burns my stomach every morning I can feel it hit it like a hot fire. I can't eat or drink much more than water for 30mins. I used to take it on waking and leave it like I did the tablets for at least over and hr before food but this is harder to do wirh liquid.
Yep endo had me in tears more or less saying I was morbidly obese and had a fat neck. She was Indian or Asian not sure and stick thin.
I'm nearly 5,9 and weigh over 14 stone but I am active as I can be, but hard when your tired.
So will t3 help me and have tablets instead? I feel fed up as fought to get the liquid as the lactose was giving me cramps and sickness.
Also any thoughts on my adrenals and helping boost it?
Also I take iron, vit d and b complex with sublingual in it? When's best to take as I find the hrs confusing.
Also is natural thyroid better?
Just at my wits end.
I've lumps around my abdominal area that hurt, they say they ate fatty lumps, but they hurt. I've hormone problems, I've pain in neck and legs, headaches, and tired and quite spaced out most of the time.
Relating to my previous reply, I looked up these ingredients for you against a histamine intolerance list, it is listed as a histamine liberator which should be avoided by people who are histamine intolerant:
Ah, OK, I see what you mean about the liquid T4. That is unfortunate.
Is natural thyroid any better? Well, for a start, it's not as 'natural' as all that. It still contains fillers, because you can't have a pill without fillers. But, each different brand of NDT has different fillers. You would just have to try them to find out which one suited you best.
Try not to get so upset about the endos remarks. I do know what it's like, and the skinny ones are the worst! When I was obese, I had all sorts of rude remarks made about it, and none of the doctors seemed to understand that is was their fault, because they weren't treating me correctly. In fact, I came very close to clobbering one doctor when he made a rude and unfeeling remark, leapt up out of my chair and gave him the shock of his life! lol I shall never forget the expression on his face! But, of course, I don't recommend going that far!
I'm only 5ft 5/6/7 or something, don't really know, and I've weighed a lot more than 14 stone in my time! More like 20/21. I lost a lot of it when I gave up doctors - they were the worst possible thing for my health. I now take T3 only. But, you are going to have to sort out your stomach before you can do anything. I don't suppose anybody has ever thought about your stomach acid, have they? Well, try this home test, at the end of the article :
If your stomach acid is low, it's going to cause all sorts of problems. But, there are things you can do about it.
I don't know if T3 will help you, I haven't seen any lab results. But, it's still in pill form, with fillers, and if it's the fillers that are a problem... But, one step at a time. Sort out your stomach, first.
Adrenals need to be nourished. They need plenty of vit C, and plenty of b vitamins, and salt - do you get enough salt? Have you been avoiding salt because you associate it with water retention? You need salt, your adrenals need salt, and your stomach needs salt, to produce acid.
Also, try and have a high protein breakfast as soon as you get up, to support your adrenals at their busiest time.
'Also I take iron, vit d and b complex with sublingual in it?'
Sorry, I don't understand this. Sublingual what? Sublingual B12 means that you let the tablet dissolve under your tongue, rather than swallow it. It's not the name of anything.
Did you have your ferritin and B12 tested before starting supplements? If so, can you give us the results, with the ranges, and tell us exactly what you are taking, and how much? I think it would be better to do that in a new question, because not many people are going to read this thread, now. And you'll get better answers than just relying on me! lol Everything to do with nutrients will be explained then.
Take vit C with taking other things, like iron. Or even with your liquid T4. It helps absorption. You can take up to 5000 mg a day. But, if it goes right though you, best to be careful, because it may make your runny tummy worse! Experiment with small doses, and see how it goes. All of this is trial and error. There are no definitive answers.
I think the liquid T4 is the most expensive, isn't it? Your doctor might be relieved to put you back on Teva!
But, I don't think there's a hope in hell of getting T3 prescribed at the moment. And, I can't even say if it would be beneficial without seeing your labs.
What I think you need to do, is start right back from the beginning again, and get comprehensive labs done. It's doubtful your doctor will do them, so would it be possible for you to do them privately? Details of private tests can be found on the Thyroid UK home page.
You say you've been rushed for allergies that were never found. Was this after ingesting certain foods? Have you been checked for Histamine Intolerance or DAO deficiency? That would cause allergic reactions to many foods. It can cause reactions as small as skin reactions, swollen tongue, gastric problems all the way to full blown anaphylaxis (if you ingest high enough levels of histamine).
Certain fillers and ingredients in medications are also high in histamine, as is most dairy.
I seem to have never come across this even after seeing many people.
I've never had any full explanations as to why it happens. All I know I start with tingling in the body then start to panic and feel breathless I then sometimes sweat buckets and end up on the loo of ages hardly keeping my head up.
It's like I've been poisoned I've felt this so many times.
Fish was one trigger massive issues with cow dairy now I can't eat to much gluten.
My gut rules my life and I have a constant nasel drip too so always congested and use liquid antihistamines which also have the nasty chemicals in the thyroxine does.
My skin reacts very easily to things I can't win.
I'm going to print all this our but with gp one problem at a time and only two in a double appointment I'm struggling.
Fish would do it as it's high in histamine unless cooked incredibly fresh (meaning cooked right after caught, or frozen right after caught and cooked immediately after defrosting). Most dairy (expect for a handful of cheeses) are also incredibly high in histamine (the ones that are safe are certain young lactose free cheeses). Your symptoms sound like mine when I was undiagnosed, some times I would be near passing out as my entire body would sweat and I could get so cold and start shivering. This is an anaphylactic response.
Very few doctors know about Histamine Intolerance and DAO deficiency, it's a rather new diagnosis. I only got diagnosed this year yet have been going to doctors with stomach problems my entire life, and weird allergies that would come and go.
If you feel like this might be the cause of your problems please feel free to ask me more. I am happy to help, as I know what horrible experience it can be having constant random allergic reactions to literally everything and not being able to figure it out.
Ps: Your GP might not know about this very well, but maybe they can run some simple blood tests for DAO, or at least give you referral to a gastroenterologist who should be able to help.
I've been formally tested for allergies and they never came back positive yet i found myself a regular at a&e when I was younger with allergy type symtoms.
I do manage it a lot better but I do get flare ups and the massive attacks of sweating and feeling like your dieing on the loo and then throwing up are very scary. My last serious exposed was a year ago but I still get mini ones.
I classed them as ibs type allergy attacks and to be honest hospitals and GPS are useless.
Mine all started with a bleed from the bowel one night after eating a fish pie, sweating followed and I was sick. The blood kept coming from my bowels. Awful never been right since.
I've seen specialist had cameras left right and centre.
Seeing a gastroenrogist soon so I'll print your info out to aid me.
I dont eat fish any more and avoid seafood. I don't eat cow dairy only goats. I limit gluten and can't cope with certain foods. My condition is very controlling. With that and the thyroid and the nasel drip I pretty much give up at times.
Good that you're seeing a gastroenterologist, definitely mention DAO deficiency to him. You're the only other person I've heard of who has quite literally the same symptoms as me.
I don't get vomiting really, but my body starts to flush out in every other way, and I also get trapped on the toilet, several times I really did think i was going to die as I sweat so much there was a pool on the bathroom floor and I would become so cold. The episodes would last around 30 minutes to an hour, and it is truly scary.
Other people I've spoken to don't get reactions as violent as this, when my DAO was tested it ended up being too low to even register on the test, which means I basically have no tolerance and just like you I have to be incredibly careful with what I eat.
I also got blood from bowels too, this was from ulcerative colitis which was diagnosed at the same time. The thing is doctors haven't said it but I'm sure the colitis is an end result of bad reactions to food, since I've learned what foods to avoid I don't get it anymore.
So our stories are quite similar.
Please update me with your gastro visit. Feel free to PM me if you want.
Since it's late now I'll leave it at this. But if I think of any more info tomorrow (with the help of a clear mind) I will post it here
I've never come across someone else having this either.
I'd always start with a noise in my tummy usually right side as a warning then I start to burn up a bit. Then it's get to the loo and I Starr to go floppy/energyless. The sweating then takes hold and I look like I've been dipped in the sea. Hair sodden and clothing. I've tried to take clothing off I've felt so out of it.
I'll then get a grip a bit think I'm done and then be sick. Not always but when it was that bad.
I then get bowel spasms and virginal and feel like my gut has given up.
I need to sleep as no energy. I'll feel rubbish for a few days.
I described this as feeling poisoned.
These have happened a good few times from early twenties into my thirties.
Other times its ibs and cramps then just needing to poop all time which is frustrating.
Recently my bowels don't feel right or different and not for the better. I've also noticed what they are saying are fatty lumps around my abdominal area but they hurt and it feels more than just external.
My mind is ruined and my bowels don't function like a normal person.
What's your routine? What's helped you? I've never been diagnosed with anything except ibs.
What suppliments do you take? Do you take probiotics? Kefir? Flaxseed oil? And extra fibre?
You are describing not only the exact same symptoms I had, but the exact order they went in and everything. The really bad reactions (the sweating/stuck on the toilet ones) happened to me a number of times also, first one was probably around age 15-16, the last time it happened was twice in a week last year (I'm now 31).
I also knew the first sign and would run to a bathroom, I'm so lucky that most times the reaction came on at home.
And yes the only description is poisoning (which actually kind of is what it is).
My bowels didn't feel right for a number of years, the blood and a 2 week episode where I thought I wouldn't make it through we're the last straw and finally I was diagnosed. Before this I was diagnosed IBS also for many years, all allergy tests came back negative always.
My routine was firstly to get help at the gastro, it's important to have some sort of diagnoses so your mind can finally rest easy, I know you've wanted an answer for years. After that I take L-Glutamine which is a supplement that helps repair tissue and muscles (body trainers use it, but it works well on the gut).
Kefir, flaxseed oil, all has to be thrown out, those are high in histamines. I don't take any seed oils any more, and nothing that is fermented or aged as those are guaranteed to be high in histamine. Some with vinegar (yes I know everyone says take apple cider vinegar, but with this condition it actually causes harm, it's fermented).
I have a couple of food lists I could give you which state which foods are bad. What I did was eliminate them all until my symptoms were gone, then tried reintroducing them one at a time to see if I react. The reintroduction would be 1 day on 1 day off for a few days. So if it was bananas I would eat it one day, then not for a day, then try it again while maintaining the rest of the diet. Suffice to say, I didn't usually have to try a food more than once to realize I reacted. Now that my reactions are smaller I first notice phlegm and fullness in throat, headache (like a migraine), and gas, bloating, discomfort in the gut.
The things I avoid 100% (keep in mind you might react differently): tomatoes, soy products, any canned food, all citrus fruit, processed foods, avocado, tuna, any fish that's sitting on ice (I know of one brand of frozen fish that doesn't make me sick and I stick to it), any buffet food or food that has been sitting out. Cheeses (except butterkäse and young Gouda from time to time in small amounts), all other dairy, buckwheat, quinoa, kale, mushrooms. Alcohol is a big one. The list does go on... some of these items I seem to react to whereas other people with the same condition don't react.
I had to stop taking probiotics as I found out that 2 of the main strains that are in most probiotics cause Histamine levels to rise, I know of 2/3 strains that lower Histamine and I'm now looking for a probiotic that contains only those strains.
I'll send you a PM and if you prefer email you can send me your email address there (so it stays off the open forum).
For the cheeses, actually I found that younger cheeses are better (I still react if I have too much), you'll see a good explanation in the info I'll send you. So harder cheeses are usually older, and contain more histamine. At the end of the day if you were to eat it in small amounts from time to time it might be ok.
The thing with histamines is when you over-do it, all people have a limit to how much histamine they can consume before they get sick, some just have much lower limits than others, but you can take the healthiest person and pump them full of histamines at some point their body will react.
I'm on my phone at the moment so I don't have the names of the probiotics on me. Vit C could be ok, I have to take it myself. Like anything it's about amounts, if you rid yourself of other things that cause reaction, a little vit C should be ok, I don't react to it myself even tho I know ascorbic acid is listed as a "Histamine liberator", but if I ate a couple oranges, or even worse limes, I'd get some reactions.
Gastro appointment is on 17th may I've been waiting 3 months and it's been a painful wait.
Saw one a few years ago and had camera up there and found my bowel looked normal but they could not get right up as it narrowed to much and said it's probably from an infection.
My reactions last about 30-1hr. And come out of the blue.
All I get is I'm stressed.
Do you get bloat most days and wind? Heartburn most days?
Yes I used to have those symptoms pretty much every day. Stopping gluten helped a lot with the heartburn, I've only gotten it a couple times since. And yes I used to be very bloated with wind. Since finding out about my gastric problems and changing my diet I rarely suffer these symptoms, it's mostly when I cheat a bit on my diet that it returns and then I kick myself in the back.
I've have to stop eating pretty much all junk food, processed foods. Nothing fermented, no alcohol, no energy drinks, no sugary juice (I press my own fresh juice now from fruits I know I can handle).
Do you eat tomatoes, bananas, or avocados? Those ones were the worst for me, but I didn't know it at the time so I kept eating them.
Lota of information here and I thank all who have given their time up to contribute
Greygoose I've posted on here before with my results and told they were not optimal, I eill be requesting my recent bloods to find our what's going on.
My digestive system has never been great and has ups and down recently very backwards and down.
I suppliment and research things alot and try and get by.
I take pre and probiotics and flaxseed to help my gut and kefir.
I'll try with the vit c again.
So many things are filled with rubbish the Mercury pharma liquid is also full of the same fillers as the liquid teva so no healthier alternative.
I do believe the liquid is not helping.
I am finding the post by dang inretesting as no one has ever mentioned these things.
Thank you all again. X
Is the dairy problem linked to lactase? If so Tescos do lactase free yoghurt ordinary or low fat which you could take with the liquid thyroxine. Think they do a Greek style which tastes nicer.
In any event if any medication you are taking is making a burning sensation you should go back to
your doctor about the unwanted side effects, and ask for tablets. Think you should ask for nutrition advice from nhs with fact sheet on your metabolic condition to help you choose the
foods which are helpful to your condition.
You might find you have intolerance to some foods such as wheat, gluten, soya which are creating IBS. Some testing kits are available from certain pharmacies or online which you can
send back. Certain health foods such as raw vegetables, might contribute to irritable bowel syndrome with too much roughage. Avoid all bran - but try oats mixed with dried ch0pped apricot
and milk - apples bananas and apricots are said to be better for IBS sufferers.
Have you tried fibregel? Have found this helps IBS with absorption of fluids in the colon, - you can
have orange or lemon flavour diluted in water - or sprinkle it over your cereal - the ordinary fibregel unflavoured is ghastly!
I'm on inulin at the moment and it's pretty much tasteless and dissolves in water.
I'm clued up on diet and ibs but I think I'm more histimine intolerance than anything.
Bananas I love but not sure they love me. Apples are good and blueberries and blackberries don't bother me.
I'm on the teva tablets now and feel rough but just found out my tsh was low on the liquid anyway.
Soya yogurts are bad for your body anyway and especially your thyroid. Try coconut based ones instead with less nasties in.
I feel so much better off the femented kefir and probiotics.
Fibergel is awful and if you've added flavouring you've probably added an artificial sweetner which will irritate the bowel wall. Flaxseed is good but too rough hense me using inulin which is Chicory powder.
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