As I was trialing my Liquid T4, I thought I would increase the HC from 5mg to 10mg, in the hope I would be able to tolerate the medication (looking back I realise that was a silly thing to do) - I started by taking 1ml (5mcg) on the 10th July - it seemed to work wonders, I then done the same on the 14th, so decided that I would start taking 0.5ml (2.5mcg) every morning but by this time I was begining to feel dreadful, pulse was in the 80's (but that is normal for me) and now I feel shocking, I haven't even been able to go to work today. I have stopped the HC in the hope it is just that, but could it be the medication? If this medication doesn't work then i haven't a clue were to turn, I know I have had enough of my miserable existance x
How can I feel this bad if all thats wrong is my TSH is a little high?
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Kitten, I think it may have been a mistake to have changed your HC dose when you were trialling liquid T4. Can you trial T4 on it's own for a 2/3 weeks before adding HC or vice versa? That way you might tell which is helping and which is causing problems.
Hello Clutter, I have completely stopped the HC but will continue with the Liquid T4, that did seem to work more than the tablet form, so I am hoping it was the HC.
If it is the T4 then it is clear that Thyroid medication isn't going to work for me, A friend suggested having my Thyroid removed, that way it can't cause problems with the uptake of the medication, do you think that is a possibility?
I really don't think that the gland is causing problems with the uptake of the medication. How would it do that? It probably isn't doing much at all! People who don't have thyroid problems do not understand about removing the thyroid. They think that if you take it out, all your problems are solved. Which, of course, isn't true!
If I were you, I would do a couple of weeks of HC before going on to the liquid T4. It is always said - even on the PILs in the boxes of Levo - that adrenal problems should be addressed before adding in the thyroid hormone. You need the cortisol to be able to convert your T4 to T3, which is the active hormone. How do you take your HC?
You say that if the liquid T4 doesn't work, you don't know where to turn. Have you tried T3 or NDT? But, of course, nothing is going to work if your adrenals aren't working properly.
You say that all that is wrong with you is that your TSH is a little high. But that can't be all. In fact, if your TSH is high, then your T4 and T3 are almost certainly low. And it's the low T3 that is making you feel bad, not the TSH itself. That is just an indicator. You need more T3.
I hope this has been of some help and that you find your solution soon.
Thank you so much for the info. I had been on HC since Feb 2013 - 5mg was all I could ever take before I got dreadful symptoms. I do know that my adrenals have improved since last year but the problem for me seems to be the Medications.
I have tried T3 (uk version and Cynomel) Westhyroid Pure, Levo Tablets & Nutrithyroid and all have had a terrible effect on me and in the end I have to stop taking it, at best I have only every been able to take a quarter of a tablet twice a week but even that had to be cut back.
The endo said that my TSH was slightly high but my FT3 & FT4 were fine.
I have tummy problems and have done for years, I do wonder if that is effecting the uptake of the medication?
I just don't know anymore - I take all the supplements, have a healthy diet, do exercise and yoga when I can but yet my health is dreadful.
There has to be a solution! You just need a doctor that is willing to search for it. Until then, let's see what we can do...
Firstly, do you have copies of your blood test results? This is very important because an endo saying your T4 and T3 are 'fine' is meaningless. Sounds like he's talking about the weather! 'Fine' is not a diagnosis. We need the exact figures with the ranges. What was your last adrenal test? Have you been tested for all the vitamins and minerals?
Secondly, what do you call a 'healthy diet'? We don't all have the same opinion on what is healthy and what is not. About how many calories do you eat daily?
Thirdly, what sort of exercise do you do? And how often?
That should give us a bit more of an idea where we're going with this one. lol
I really appreciate your optimusim - I have been down in the dumps.
I do not have results from the endo I am afraid, just told "they were in range" I will ring up and get them though. I do have my results from Nov if that helps, back then my Iron was above the reference range. I did ask about testing Vitamin levels and the GP said they don't test them because vitamins are dangerous, so I asked the endo and she said that they do not test for other illnesses etc until the Thyroid is better because it causes so many problems.
Exercise is walking (my pulse is always high and getting on the exercise bike pushes it through the roof, so i have been avoiding that) - I go walking after work for 20 mins about 3 times a week sometimes more when I feel upto it, and If I am having a better day then I may go bird watching and can be walking for maybe 5 / 6 hours (I do have to recover from that)
My diet is a vegetarian one, with salads, Humous, wholemeal bread & Pasta, Pulses, vegetables (always steam) tofu, Quorn, No chocolate or sweet stuff, about four cups of Tea a day, Camomile Tea, Water is filtered, fruit, potato's etc and ocasional packet of crisps. The milk I have in the house is either Mild Soya or Rice Milk. I am allergic to cream - so I do have to avoid that.
I do feel as my stomach is getting worse, that is playing apart in my poor health, Many year ago I was told I had Cysts on my overaries and slight tares in my gut lining - due to leaky gut.
OK, so, I'm afraid that diet is not 'healthy'! Being a vegetarian means that you miss out on a lot of vitamins and amino acids. Why did you becomone veggie? If it's for humanitairian reasons, I can fully sympathise, but if it's just because you believe it's healthy then that's not right, I'm afraid.
I went veggie,once. Worst thing I ever did. I became so hypo, it destroyed my life - well, the life I had at that time, anyway. I've had to build up a new one since then...
We human beings are omnivores. That means we are designed to eat meat and veg. I know this is a delicate subject, but we need animal protein and fat for our health.
However, if you really can't eat meat - and I can sympathise with that, I don't like eating it, either - the worst thing you could do is replace it with soy products. These are an absolute no-no and are probably what are making you so ill. So cut out the tofu and the soy milk. Soy should only be consumed if it is fermented, but for us hypos there are other problems, too. Because soy is a goitrogen. See my explanation of goitrogens here :
A goitrogen is a substance in some foods that blocks the up-take of iodine by the thyroid gland, making it difficult for the gland to make thyroid hormones. You will see a long list of goitrogen-containing fruit and vegetables there and some of them might be making you feel bad now. But I do explain why there's no need to feel depressed about that.
However, soy goes one step further, because it acts at the cellular level, too. It impedes the uptake of thyroid hormone by the cells, so no matter how much hormone you have in your blood, the cells can't use it and you stay hypo.
I understand you don't eat cheese, but what about eggs? Eggs are a very good food for hypos. And don't be put off by people saying there's cholesterol in them, we don't care about the cholesterol! It's a false problem. But the real problem is, as I see it, there's not much protein in that diet, and eggs are packed with protein. And where's the fat??? Your body needs fat. Seems like the only fat you're getting is in the occassional packet of crisps! And that's bad fat! Do you put olive oïl on your salade veggies, at least?
Vitamins are dangerous!!! What sort of a Wally have you got there for a doctor?!? Most vitamins are water soluble so you can't over-dose on them, you just pee out the excess. Vit D is fat soluable, so if you're not getting any fat, you aren't absorbing that. But eggs provide vit D AND fat! lol
Personally, I think you should eat a bit of chocolate from time to time. It contains magnesium, and you're probably deficient in that, most hypos are. And it would be a bit of a treat to lift your spirits. Or, if you don't like chocolate - I don't - drink cocoa! I make mine with just hot water and coconut sugar, it doesn't need milk and is delicious.
All things coconut are good for you, and provide some much needed fat, and lots of other goodies.
And salt? Are you avoiding that? The body needs good salt - pink himalayan, sea salt, etc. Don't be afraid of it. The adrenals need it!
The walking is good, best exercise for hypos along with swimming. The only trouble with swimming is the chlorene in the water, which we should avoid. Anyway, walking is good. Especially if you enjoy it.
So, I think we've made a good start there! Lots of things to think about. I look forward to hearing what you think about my ideas about food!
I do take lots of vitamins (I just laughed when the doc said that) I do put Sea Salt in my own cooking, and when I do my own cooking it is normally from a cookbook that is for people with adrenal problems and Intolerances. I do cook with olive oil. I can not have coconut sadly that really upsets my tummy and so does cream, this is why I try to keep my dairy to a minimum. I do love chocolate but the only reason I avoid it is because of Candida. I do have a piece of cake on my birthday but that is it.
With regards to being a veggie - I have been since I was fourteen (I think) so 19 years - Veggie substitutes such as quorn are packed with protein, but you are certainly right my diet needs to be looked at, their is something imflamming my stomach and maybe doing harm with the cells.
I would happily cut out soya but couldn't go back to eating meat.
When I was fourteen I had to watch a film at school (can't remember what lession) or why it even came about, it was about what goes on in a slaughter house - it broke my heart and ever since then I have never touched meat and I also try to fight for animals rights (not for a long will, due to my health).
Crisps are not good, it is for convience - but a bad habit to get out of.
You are right I will have to take a close look at my diet xx
Hmm... What worries me about Quorn is that nowhere can I find a list of ingrédients. And I have read that some people have an allergic reaction to it. How long have you been eating it? I really can understand your reluctance to eat meat, but what if the substitute is causing your ill health?
I will cut out any food that could be causing me a problem - quorn included, and will put it to the test - I will do a trial where my diet will not includes quorn or soya. All I want is to be well and pain free, I just would not eat meat. I do have nutrition books/ veggie cook books - all with information on how to make sure I get all the nutritions.
I can't remember exactly when I started eating quorn or the supermarket versions but my stomach problems started when I was about 19, then it went down hill from their.
Their must be something I am doing that is causing my stomach problems - so I will happily give up anything
You're welcome, Kitten. An illimination diet is a Wise thing to do. And Worth it if you find the culprit. Then all the other things you are free to eat again! You don't lose anything, but you stand to gain a lot.
But please, please, give up the soy for ever. Even if you don't feel the effects now, it can cause long-term damage. It is not a food, it is a marketing ploy and the whole world would be better off without it!
I will be starting the elimination diet & Soya is first on the list. You are right - lots to gain.
It is amazing how many different ingredients that end up in our foods, unless we really pay lots of attention and do research - we don't know what we are eating. We all know what the food industry is capable of (who could forget the horse meat headlines)
You are very against meat substitutes, does this include Tofu?
I have not come across anyone who is so anti quorn before - I am quite surprised.
I just can't image that eating meat (at today's standards) could have any health benefit - after all, look at the horrible conditions these poor animals have to put up with, covered in their own toilet and in such cramped conditions, constantly being given antibotic's etc and being fattened up as quick as possible for profit and and demand. Dr Vernon Coleman seems to hit the nail on the head for me, but I can see from a Thyroid point of view soya has to go.
Oh, I quite agree with you about meat these days. But Mother Nature did not foresee man's cruelty and greed, and made us omnivores.
I am not anti-quorn - although I am very anti-soy!
I just don't trust it. I never trust anything that doesn't give a full list of ingrédients. And that's what I can't find on quorn products. I've never eaten it (I don't think...) but surely there have to be artificial flavourings and préservatives and stuff, no?
Here in France everything is labeled so meticulously and I've got used to that. I always read the ingrédients before buying anything - even bread! Not that I buy much of that, these days.
Quorn is made with fungus and that doesn't agree with everyone. So I think one should proceed with caution. Just try illiminating it and see if you feel better, and let us know the results. It would be interesting to know.
Anyway, hope you find the culprit!
Hugs, Grey
PS If you like fungus, do you eat mushrooms? They contain vit D. So a dish of mushrooms fried in butter, to help absorb the vit D, a glass of white wine (if you can tolerate it) and you have a meal fit for a king! lol Or even a mushroom omelette - although eggs are best eaten lightly boiled or poached. Mmmm I'm making myself hungry! lol
I must say I do agree with what you are saying, and soya is first of my list. Sadly I can't have butter because of the cream in it - I do have a nasty reaction to that - this is why I try to keep dairy to a minimum - logically if cream is a real issue then so milk should be at a lesser level, but as we all know from suffering with this dreadful illness - it never is logical.
I do eat free range eggs and have olive oil, houmous (which has quite a reasonable oil content)
I have got to have a scan on my stomach next week, I am praying no damage has been done with all the years passing and not being able to sort it out.
Well, not exactly a mushroom. It's fungus. All mushrooms are fungus but not all fungus is mushrooms. And that's only the base, there just have to be other things added. But what things?
I just wanted to say I noticed the almost complete lack of fat in your diet too. If coconut oil is a problem, what about eating just plain fresh coconut and coconut water? Is that possible or just as hard for you to tolerate? And I did a search on the page just to check - there isn't a mention of butter anywhere in this thread. Can you lather real salted butter on your veggies, potatoes, and bread? And I really don't mean spreads or margarine or combinations of butter and something produced in a laboratory. I mean real butter.
I used to try and keep to a low fat diet. I ditched all the "fake" fats a couple of years ago and now stick to coconut oil, butter, lard, dripping and olive oil, all of which I use generously. I feel better and more energetic for it. My weight hasn't changed but I still have some way to go to commit to my diet changes 100%. I'm hoping to lose weight when I cut down on the carbs a bit, and increase the protein and fats some more.
Good luck with your diet changes. I'm a bit concerned that you are cutting stuff out of an already very restricted diet, without stating what you will substitute in its place.
Edit : I just thought of something else. If your diet has been almost devoid of fat, then your fat-soluble vitamins must be very low too. They need to be taken with fat to have any hope of them being absorbed.
You're so right about the fat, HB! If one eats potatoes, why not slather them in real butter! It's a wonderful food! And that's why I mentioned the eggs because they contain both fat and vit D. But Kitten-Whiskers still hasn't said if she eats them.
But she's not planning to cut out a lot of stuff from her diet, she's doing an illimination diet which means you illiminate all the possible suspects for two or three weeks and then reintroduce them and see if they cause any problems. If they don't then she can continue eating them. Myself, I wouldn't be at all surprised if it's not the soy that's making her ill. It makes me very ill! And she doesn't need that, anyway. Vegetarians eat soy to increase their protein but the sad fact is that humans cannot absorb the protein in soy, so it doesn't do any good and can do a lot of harm.
Hello Humanbean, thank you for your response, I need all the info I can get.
I was just giving an example of what I eat most of, not everything included in my diet. I do eat free range eggs, I do have cheese and I use Olive Oil. I use a dairy free spread (it doesn't include Soya) but I can not have normal butter because of the cream in it, I am allergic to cream so must avoid that. I did try coconut water but seemed to have a similar reaction - which makes no sense as coconut is supposed to be an anti inflammatory.
I completely agree that things need to be changed within my diet but at the moment I am trying to find what is causing all my stomach pains - this is now a number one priority as I am sure it is playing a part in my very poor uptake of thyroid medication. I can not believe that the body can be intolerant of something it makes itself, of course their are fillers but If you go for the meds without the fillers and the same thing happens then something else is going on.
Highly fed up with my miserable life and desperate to change things around
I don't think I know what full health is. I've neve been what people call healthy, even as a child - NB I'm not talking about doctors when I say 'people'! lol
It's pretty certain that I've been hypo since I was a small child but I wasn't diagnosed until I was 55. then I was mis-treated and Under-treated for the next six years which made me worse that I was before. I think a lot of permenant damage has been done and I doubt I will ever be 'healthy'. I just do my best to feel as well as I can.
Greygoose that is terrible, all those years being undiagnosed, all your life like that, my heart goes out to you. I am not completely suprised they took so long if I am honest. I thought things were going wrong for me when I was a child, as the years past and I became an adult I kept visiting the docs and by accident when I was 28 they picked up on it, sadly after the treatment started I went down hill and still going, and then my adrenals became very poorly.
I am sorry Greygoose, I thought as you were so knowledgeable you would have been completely well - but the doctors have let you down, such a shame.
Thank you, Debs. Doctors have let so many people down that it's not an unusual story.
But I'm not complaining. I've had a lot better life than some people, managed to have three wonderful kids, fulfilled most of my ambitions (but still haven't ridden that elephant through the jungle yet! lol But fifteen years ago, I was saying 'still haven't ridden that camel in the desert yet. Now I have!)
Now, in my old age, I'm just about coming to terms with it and accepting it as an act of god. Nobodies fault. Could have been worse. And at least I'm still alive. And, as I said, I make myself as comfortable as I can despite the doctors. Not that I'm giving up the fight! Oh, no! I've just stopped banging my head against the wall, that's all.
It is obviously more difficult to be ill when you're Young, and less tolerated by others. But at my great age (69) people more or less expect it! lol
As for the camel, no, it wasn't much fun. I wouldn't have missed it for the world but it was stinky and they are such cantankerous animals! Much prefer them from afar. But I did that when I was 60. Couldn't do it at the moment! Used to ride horses but couldn't even get on one now. But as I said, they were ambitions fulfilled so no regrets.
Right now the symptoms that are confining me vey much to my bed and desk are muscles weakness (can hardly walk and not very far), fatigue (but that is getting better) and my hair!
It all came out one day a few months ago when I washed it. I just found it in my hands! Such a shock. It's been falling out for years, but not like that. And would you believe what my doctor said about it??? That's perfectly normal, he said!!!!!!!! So if I go out, I have to wear a hat, can't stand wigs!
The other thing is my feet. They are very tender and difficult to walk on, all shoes hurt, at night the skins burns, etc. I don't know how much of that is thyroid and how much dificiencies, so I'm covering all bases.
So, all in all, I can only go out for long distances if my family take me in my wheelchair. Oh, well, never did enjoy walking! lol
Yup, a lot of people would say that's just old age. But then, what is old age but hormone production slowing down and causing deficiencies. Actually, looked at like that, you can't win, can you! lol
I am so sorry to hear you are so poorly, Adrenal fatigue is awful, do you have Hydrocortisone for that?
Doctors are quick to say "that's normal" how is it normal for you hair to fall out - especially being female that is going to have an effect.
It Does sound like you have had some great times and you have a great way at looking at things.
I hope things can pick up for you, and to have your feet hurting like that isn't any good - I suppose we have to keep smiling
I get very annoyed when they put it down to age, my Grandad is in a right mess health wise (so awful to see) he has without a doubt been under treated with his Thyroxine for years and now it has all caught up with him - he can't do anything at all now, his breathing is laboured - he has no energy at all, gets up at 7am - sits in his chair - does nothing all day and goes to bed at 6pm at night - he has been doing that for about 25 years. Now he can't speak, his kidneys are failing and he has a few other health problems. I sit and look and him and I see in him exactly how I was. I have said to my nan I will take him to the docs or to see an Endo and will happily say stand up for him. just because someone is older doesn't mean they should suffer - their are things to help, my poor grandad has to suffer like that, looking at him always upsets me, it has been hard enough getting them to listen to me at my age, i would have no chance with grandad at the age he is now, but I am going to do my best for him.
Yes of course Camels are smelly, how to you get on it? I haven't really done much that's exciting to be honest, once I am in better health though
Umm... I didn't say adrenal fatigue, I said fatigue. lol I used to have adrenal fatigue and took HC but now I'm just tired!
So sorry to hear about your granddad. Yes, he would have trouble being taken seriously at his age, but perhaps with you to stand up for him and be strong for him, he might stand a chance.
How do you get on a camel? lol The camel squats down and lets you. IF he's in a good mood! lol Mine decided to stand up whilst I was still only half on, and they stand up back legs first, so I nearly went flying over his head. And having already done that on a horse (perhaps explaining my erractic pituitary!), that was the last thing I wanted to do! lol Fortunately, I managed to hang on. But I didn't 'alf scream! lol
My son's girlfriend is intolerant of milk. this means she cannot eat butter or cream either -makes her really poorly if she does. However she ca neat a hard cheese- am really not sure why?
The endo done a blood test to check for a blood test for Gluten Intolerance but that came back negative? Mind you how reliable are their bloods tests.
I do have a strong reaction to cream but not so sure about Milk/Lactose etc. I have tried an exclusion diet where I excluded gluten, wheat, dairy - all in one go for 3 weeks but never felt any different (which surprised me) maybe I needed to do it for longer.
I did change over to coconut milk and without a doubt that was causing me terrible stomach aches - which isn't logical as coconut is supposed to be an anti inflammatory.
Do you think it could just be down to the Thyroid / Adrenals - or maybe it is one of the less common foods causing a problem. It has gone on so long and I would love to be rid of it.
Do you know what your results were for gluten intolerance? The only reason why I ask is that they are not a reliable test and a negative does not mean you don't have it.... There has been lots of recent research linking the same gene pathway for Hashi's, Vitiligo and PA. I have two of those conditions but tested negative for the IgG, IgA & IgM -my Gp said therefore that I don't have it......however I am not convinced as i have struggled with wheat and grain products on and off for 10years going through patches when I don'teat them -feel better without but it did take a little while before I felt the difference.
having said that you sound more dairy intolerant -you would be very unlucky if it was both! Three weeks is not long enough to have tried an exclusion unfortunately. Realty a Gastroenterologist would be your best bet to look into this for you. i am going to ask my GP to refer me as am fortunate that I have the leading UK centre on Celiacs and Gluten Intolerance right on my doorstep. Shockingly I did not know that in the UK 1/100 people are gluten intolerant -wow!
Anyway i have deviated rather but I do hope that you find success with the liquid T4 and that life improves for you -soon Hugs
I do not have the results for the gluten intolerance - they all seem so secretive over the results, you just get told "your in range" or "your tests were normal"
I have been told that you can get a home test kit from boots for Gluten for About £15.00, have you ever tried that?
It is so hard to avoid gluten or dairy completely - it seems to be in almost everything. I have started doing my own cooking (hopefully that will improve :>)
I hope you get the help you need as well - must admit I didn't realise it was 1/100 - wow.
I am going for a ultrasound on my tummy next week to see if that will show up anything, if not I was told I would be sent to a specialist.
KW, if you want to see the results of old medical tests ask your practice manager for a copy of all your manual and electronic summary records. It will cost £50.
Yes I was shocked at that incident rate too....and the fact that the gene pathway has now been establsihed for hypothyroidism, celiacs, PA -had no idea. this doesn't mean to say we will get these other autoimmune condtions but we are at a higher risk. I haven't used any private testing -my understanding from Professor Sanders, is that the two common test IgA and IgG are not reliable and can give false negatives - he talks about EMA being far more reliable (97%) but not sure what that is!
In any case in your situation it is the dairy that you know upsets you......You really wouldn't want to get int a gluten free diet on top unless you had too -it would be awfully hard to implement and you would definitely need expert guidance from a dietician -I wouldn't go there for you!!!!
My son is allergic to all milk products and soya. I am allergic to any long life milk products. There are degrees of reaction. For a while my son was able to tolerate cooked milk in biscuits etc but has to now have all excluded.
You'll make your adrenals worse if you abruptly stop the HC as it's a steroid. It will then impact in your thyroid. It's a fine balance.
I started eating meat again as I got ill. I started with fish then chicken. I'm now attempting steak but it's hard work. My body has never handled carbs well and I'm now, at the age of 40, a diabetic. Wish I never went veggie as I need a low GI/Atkins approach to dieting.
My adrenals are knackered as is my B12, vit D etc.
My body is well and truly broken and I'm trying my best to piece it back together again.
I'd say try adding b12 (if you don't already), vit d3, vit k2, liquorice root, folic acid, iron and some nutri adrenal stuff.
Thank you for your reply - sorry you are so poorly - it is an awful problem to live with and to solve but it does sound like you are getting their.
I was never on a big dose of HC just 5mg daily - I could never tolerate any more, and to be honest stopping it has got rid of all my breast pain. I did try Nutri Adrenal but that gave me really bad diarrhea.
As from a Veggie point of view I do not think (in my case) that was what caused my health problems - (apart from not supplementing for not having fish) - their were a number of factors but I do not think that was apart of it.
When I can tolerate the medication then I do improve - but that has been the biggest problem,
Now I am the liquid form of T4 - that has been better for me but my pulse has gone through the roof - so I will need betablockers.
I do take lots of supplements - I wouldn't be without them : >
It is very controversial about eating meat but my parents and other family members have been veggie for much longer than me and are very healthy - I guess it just depends
Thank you for your reply - sorry you are so poorly - it is an awful problem to live with and to solve but it does sound like you are getting their.
I was never on a big dose of HC just 5mg daily - I could never tolerate any more, and to be honest stopping it has got rid of all my breast pain. I did try Nutri Adrenal but that gave me really bad diarrhea.
As from a Veggie point of view I do not think (in my case) that was what caused my health problems - (apart from not supplementing for not having fish) - their were a number of factors but I do not think that was apart of it.
When I can tolerate the medication then I do improve - but that has been the biggest problem,
Now I am the liquid form of T4 - that has been better for me but my pulse has gone through the roof - so I will need betablockers.
I do take lots of supplements - I wouldn't be without them : >
It is very controversial about eating meat but my parents and other family members have been veggie for much longer than me and are very healthy - I guess it just depends
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