Hey everybody, was just curious about this; my levo is still being adjusted (started on a ridiculously low dose of 25mg considering my tsh was 98.3, have changed doctors since and am soon going up to 75) so I haven't noticed much of a difference from medication, however I have noticed a sizeable improvement from working on my nutrition. There's a pretty formidable foe in my way though; tackling my love of gluten/dairy products! I've been aware that giving these up are essential to some peoples' health, and have had some limited success with it, going a month or so gluten and dairy free before relapsing, usually due to stress. (I'm still fairly new to this world, have been suffering for a while but was only diagnosed hypo about 4 months ago)
I guess really I'm hoping that when my correct level is found, I won't need to do so, but I wanted to know how likely that is; if I really must I will do, because I have no desire to suffer these symptoms my whole life, but gluten free bread is universally revolting and I love me a bacon sandwich :')
I know it's hard for a lot of you to know, since most of you are here because you still suffer symptoms, but would anybody know the success rate of levothyroxine in accompanimemt with a regular healthy lifestyle?
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Warriorduck
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It is estimated that 80% of people do very well on Levothyroxine once they are optimally dosed.
Unless you have Hashimoto's there is no need to give up gluten and certainly no need to eschew dairy unless eating it makes you feel unwell.
A pity your GP didn't read the NICE recommendations which suggest 50-100mcg as the starting dose unless the hypothyroidism is long term undiagnosed, the patient is >50, or has heart disease.
Thank you very much for your informative reply! I guess I'll wait and see what happens with my medication and how I feel in a few months before I make any decisions, will also make sure I get an antibody test nexttime as I know they didn't bother last time. You may have also shed some light on the low dosage too, I am 21 so perhaps why I was started so low?
No reason to start you on 25mcg because you are 21. It is patients >50 who need cautious dosing. Once you are optimally dosed you may find symptoms lagging behind good biochemistry by several months.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...
Thyroid antibodies are usually only tested once on NHS. Were they tested when you were diagnosed?
Whoops, that was me being a little slow and misreading the > sign 😂
& Nope, never been tested, I asked for it but got told it "wasn't necessary" - one of the many reasons why I recently left for a new clinic, nobody seemed particularly interested in actually treating me at the other place
There's no treatment for Hashimoto's, you are already getting treatment for the low thyroid hormone Hashimoto's causes. However, if you have a confirmed diagnosis of Hashimoto's it might help reduce symptoms and antibodies if you adopt 100% gluten-free diet.
Exactly my reasoning, I already knew a fair bit about Hypothyroidism and Hashis before I got diagnosed as I was basically convinced I had it, seeing as my dad also does, and wanted to be armed with as much information as possible, however the gp declared it unneccessary on my behalf, which was more than a little frustrating. I'm planning to get a full thyroid test done privately at some point, as I do like having physical data about myself to hand
Medichecks UltraVit or Blue Horizon Thyroid Plus 11 are comprehensive blood tests including TSH, FT4, FT3 and both thyroid antibodies plus some vitamins and minerals. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.
I was started at 25mcg at 23, knew it wouldn't be enough and having to stay on it for almost 3 months before a blood test was time wasting for me! Think it's unfortunately pretty standard as my sister received the same in another county
Oh I agree and my sister is an F2 and she got the disease after me and she was coming to me with questions! But surrounding the whole ITT campaign and hearing people's stories, it makes me think there is some conspiracy theory when it comes to the thyroid. Who is telling the Dr what to prescribe, how much and telling the patient little, none or incorrect info. I was told I've got autoimmune thyroid disease in 2014, my levels (antibodies) would stay the same (they have doubled) and there's nothing they can do treatment wise!! Don't like this thyroid injustice!!
Ask your sister how much time was spent teaching her about thyroid. Newly qualified doctor I asked told me 8 weeks on the whole endocrine system with most of the time devoted to adrenals.
I have had fantastic results since August by cutting out all grains, cutting out as much sugar as possible, keeping in mind that fruit contains sugar. I have added good fats. I don't call it a Diet - I call it a Special way of eating.
Despite being on 40mcg of T3 a day (I was diagnosed in 1981) I was still getting long periods of deep depression, agoraphobia, paranoia, exhaustion. This way of eating has turned my life around... at long last. I know everyone is different but worth a try.
This is my from my Word Doc ..........
Carbohydrates and sugar spike the blood sugar up and the body has to work hard to get the blood sugar down again. If it has to continually work at reducing blood sugar, something will go wrong. …. …..Insulin and cortisol.
Fruit also has a fair amount of sugar so I’m only allowed to eat a small amount (one piece a day maximum, or some berries). Bananas are very high in sugar.
The above two – carbohydrates and sugar/fruit – diabetics will know to cut these out.
Grains – are all a form of grass & our body has problems digesting it. Cows eat grass and have three stomachs to digest it. And they are classified as carbohydrates
Our brain is made of around 80% fat, therefore it needs good fats in order to function properly. The advice we were given to eat a low fat diet, in my view, has caused a lot of depression in the population.
No doubt the pharmaceutical co's put that out so they could sell more anti-depressants (?)
Recommended to eat - full fat milk, cream, real butter (+ melted over veg), olive oil, cheese, cream cheese, eggs, meat including bacon (not sausages), oily fish (tinned mackerel is my favourite), white fish, plain bio yoghurt, all vegetables (I make veg soup with a blender), all salad items, avocados, nuts (not salted or roasted), beans (I buy tins of mixed beans & baked beans from supermarket & drain off liquid), tinned prunes (delicious with cream!). There are other foods that are ok – eg pulses, sauerkraut (which I’ve googled how to make & about to try making it), Hellmans mayonnaise, Bovril, cocoa powder (not drinking chocolate - it's 70% sugar) in warm milk, Lindt high cocoa chocolate slab, Not meant to eat potatoes as they are high carb (I have a little)
Example of one day’s meals & snacks ----
Breakfast : Hard boiled egg with cream cheese or Bacon & egg
Morning snack : Mug of warmed full fat milk & half an apple or Home made vegetable soup
Lunch : Tinned mackerel with any salad items (+ mayo)
or Handful of nuts + cottage cheese with tomatoes or any salad item
Afternoon snack : Bio yoghurt with cream mixed in + 3 prunes or a few defrosted raspberries
Supper : Chicken or any meat with mixture of vegetables with melted butter over veg
Really glad you're starting to feel better at long last! I admire how well you've structured your food consumption; unfortunately I am an extremely fussy eater, have had an appalling diet until recently (which, in fairness, may have aided in me being in my predicament) but I have now replaced all of my meals with a nutritionally complete liquid food called Huel, - it's basically been a life saver and has made me feel much better! Anyway the plan is to slowly introduce myself to "proper food" ie not turkey dinosaurs and potato smiles 😂 so I will definitely take your recommendations in to consideration moving forward! Hope you continue to feel better
If you're used to 'eating' liquids you could try introducing smoothies and get yourself a nutri-bullet. I struggle with eating while I'm ill, as I get very little appetite, so I now replace a lot of meals with smoothies.
My favourite recipe is: a fresh beetroot, apple, handful of nuts (for calories and protein, sometimes add a large slice of coconut cream or olive oil), Tbsp of any super food powder, apple, optional juice of half a lemon. A small amount of water.
This one is pretty sweet in taste. I find that adding an apple and the juice of half a lemon will take the edge off any more challenging flavours and make the whole thing basically sweet and tangy. And its easy to just add these ingredients to every shopping list and never bother to engage brain. I feel confident this one is healthy enough that I could eat it for almost every meal and be fine.
An easier option that I also find very nutrient dense is: spinach, strawberries, dates.
I was gluten free for a year because I have hash's and all the forums advised me to. I didn't feel any change so went back to gluten about 6 weeks ago and have had no ill effects.
Hiya, good luck with your treatment! My thyroid is managed by levothyroxine plus lifestyle. I had really bad gut pain for years and realised it went away when I avoided gluten so that’s why I went gluten free but I think it helped my thyroid too. My tpo antibodies have come down a lot.
To get properly into gluten free I had to watch loads of American webinars about how bad gluten is every time I caved and eventually it just sank in and now when I see a sandwich in plastic or even some normal bread i don’t want it at all. Dairy is harder to avoid but I am now used to goats butter and goat/ sheep cheeses as these are meant to be better than cow dairy, and I mainly drink Koyo milk instead of normal. You just have to acclimatise your taste buds gradually if you really want to try it and see what a difference it makes. I eat Genius multi seed bread and burgen gluten free sunflower and linseed, they’re both nice but you may have more toasties than you used to as they are more like normal bread when toasted!!
I was diagnosed back in April and had my dose increased to 100mcg gradually. I still didn’t feel well in August although my results were ‘in range’ and thanks to all the help I’ve had on here I knew my dose needed to be Increased. After the last increase to 125mcg I feel so much better. I can function. When I was undermedicated I had fast heart beat, panic attacks, depression and this has lifted since the last dose increase. I still have the odd day when im not so good but I think that’s my body catching up as I’m so much better most of the time. You really have to be patient with this as it can take so long to feel well again. I wasn’t sure that I’d be ok on just Levothyroxine but I’m almost certain I will be now. Hope that helps.
Levo alone hasn't been enough for me, I've added in T3 as well to feel better, particularly has helped mentally. Still not at an optimal dose though. Gave up gluten 15 months ago, gradually lost all my excess weight without dieting. Been dairy free for 9 months, has improved my gut health a lot. I make my own sourdough gluten-free bread, shop bought 'gluten free' contains a lot of other additives that don't agree with me. I cannot eat high fat, can't tolerate it, I eat a moderate carb diet. Still have a long way to go to feel right, though.
Jadzhia, gluten free sourdough sounds fantastic. What flours do you use and how did you get your starter started? How much like real bread does it taste?
From its texture and taste you can tell it's not 'real bread'. Real bread is springy this is more solid. You must slice and freeze it as soon as its cool as it dries out very fast. The taste is different anyway as it's a sourdough so it has sour notes, depending how long you let it stand. I use a recipe I found in River Cottage Gluten Free's cookbook. The main flours are brown rice flour, tapioca starch, potato starch, sweet rice flour and coconut flour. I use Paul Hollywood's method for making a starter.
I went for sourdough as fermented products are kinder on the digestion, but I'm thinking of experimenting with non-sourdough versions. It does take time to experiment and find out what you like!
Impossible to tell, as a) if they OK they won't be on any forums b) they might not be OK, but not realize that they could feel better and so not be on any forums. GPs and most endos in Uk don't ever test T3 so they wouldn't know, and most seem more likely to diagnose depression than admit that someone is not OK on levo. So - impossible to say.
I had about the same TSH. They over dosed me first 137 levo. I lost 15lbs in 2 weeks..... That was a real mess. It took a little over a year to get relief...... of starting over............. on a low dose than slowly building up....... but I also had to switch to synthroid.......not the generic levo. I had so many symptoms it was horrible. It takes a bit of time to recover. I think I went a long time undiagnosed. So I think that made a huge difference. I have Hashimoto. I never changed my diet. I do take the vitamins a multi and b12 and b complex. Fish oil with vitamin D. It is possible like me.......... I had to be so patient and I came on here for help. The doctors can be horrible. I had an endo accuse me of not taking the meds. I cried what is he nuts I was such a mess. Anyway I hope this helps you. All the best Susita
I had a bad start - diagnosed as Diabetic T2 at the same time as low thyroid. They should have rechecked thyroid after a couple of months and didn’t, then with my bloods at 6 months they forgot the thyroid test. So it was 12 months before they retested thyroid. On 50 mcg levothyroxine my TSH dropped from 10.5 to 5.5. Dosage if levo upped to 75mcg and the next two 6 monthly TSH results were 4.8 and 3.9. Over this period I lost 2 stone which meant no more need for diabetes medication. However it does seem that, for me, a change of dosage takes 6 months to a year to settle down. I would be interested to know whether others have shown this same gradual change in their TSH after a dosage change.
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