Thyroid UK
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Is it thyroid or something else ?

Hello

I've been on levo for about 5 years 50mcg for first 6 months then 100mcg since then..never really felt better still have problem sleeping and hardly ever feel like I have much energy some days I'm worn out Before I used to be a 5/6 hours a night and had loads of energy (apart from nights when I hardly slept at all) I went to another doctor in our surgery today as I'm sleeping and feel very tired and having a lot of really tired spells .He has told me that he would never have prescribe levo to me as he thinks my levels are ok ..he is referring me to an Endo now . Asked me if I wanted to go off the levo but I said no as I can't risk feeling any worse as I work full time .I have always had digestive problems which I have found bicarbonate of soda helps alot ..I saw a post on here a while ago about testing if it really is thyroid problems or if it could be to do with the stomach..can anyone help me find that link please . Don't know how long I'm going to have to wait to see Endo . I thought my tiredness memory loss brain fog energy levels and weight gain which I can't lioose were all signs of my thyroid. What ever it is it happened over night with me after I had a really bad shock when someone died suddenly .I put it down to grieving in the beginning but realised it was more than that but I still believe that it was triggered then any help gratefully received ..thank you Linda

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Sounds as though your doctor hasn't a clue! The logical thing would be to have your bloods done again and see what they suggest but may be your doctor hasn't a clue how to read them and make a decision. So seeing an Endo may help to sort it out for you. But please think whatelse you may like to ask as you may not get the chance again in the near future. The Endo should be able to do more testing like T3 than your doctor can so go prepared and write down any questions you have as well. If you look through a few days of this forum that could give you some pointers, things like I've heard taking vitamins etc can help, is that something I should be looking at (if you don't do this already). Also have you ever had checks for antibodies? A good Endo should look st many tests anyway but no harm in prompting if he/she isn't forthcoming.

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He never wanted me to go in it at all. It was another doctor in the surgery that prescribed it to me . I asked for full bloods this time and he is saying everything is ok liver kidneys but my colestrol does need to come down a bit..I'm hoping that the Endo will be someone who will listen as I have some food intolerances and allergies and now I'm wondering after the doctor saying I don't need to be in levo if any of that could be linked to how I'm feeling

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anyone with autoimmune problems will find they need a higher dose of thyroid hormones than the recommended dose. the unfortunate thing about that is that your endo loses the ability to monitor you adequately whilst they raise your dose - you are unique and he is playing with numbers to get your unique status sorted out! I recommend ndt as there are no preconceived notions about numbers, with 100mg daily of t4, taking into account your autoimmune status, I would say 3 grains a day naturethroid taken morning, noon and night cx

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Titrate NDT carefully though as unique to you. I was on 125/120 Levo and changed to 1.75 NDT and am trying dropping now to 1.5. I don't have antibodies though so may be that's why I'm low but also saying it needs to be the right dose for you by titration.

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We really need to see your TSH, T4 and T3 results in order to give any advice. Also have you been tested for thyroid antibodies or any vitamins e.g. Vit D B12 and ferritin, folate, iron?

Medichecks will have offers tomorrow. A lot of us on here have given up on NHS doing anything so we use medichecks finger prick tests, answers within the week!

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Hello

If did that blood test check would it check everything? Vitamin levels and the antibodies?

I will have to ring up and see if I can get someone at the surgery to print off my results

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Linda ...sadly thanks to NHS they will run a barrage of tests but never the most relevant ones vitally needed...if your cholesterol is high thats pretty much 100% your Hypothyroid but you may also have Pernicous Aneamia which masks as Hypothyroid and why B12 needed checking

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I don’t mean to be insensitive but I had a same problems with dogs - I don’t mean to compare people to dogs but their Endo works just like ours :

When a dog number 6 started to have hypo like symptoms I I thought something was wrong and it wasn’t thyroid !

Cutting the long story short - 2 are now off the Levo and doing fine and other 3 never started Levo and one is true hashi but finally she is doing good on lower dose .

I came here to get help as vets couldn’t , didn’t know how to or simply didn’t want to because the dogs looked ok .

Turns out : iron and zinc deficiency!!!

One dog did a trial on a different food and almost instantly her hair started growing - when I checked the number in the back it had huge amounts of zinc , iron , copper compared to the “ bad “ food .

I’m still waiting in copper and selenium results on 3 dogs I tested .

One which hasn’t stared Levo despite having anotibodied but not high - I will try to sort his nutrition ; get all his vitamin Bs and D better and improve iron and zinc status and recheck his thyroid . But I’m feeling positive their low thyroid function was due to nutritional deficiencies .

The 4 dogs which were thyroid tested ( one true hashi - she had pretty much no fT3 for the past year when we started testing - and I kept saying she isn’t right ! Despite her TDH and fT4 saying she was fine )

The other3 have normal TSH , ok mid range levels of T4 , fT4 if the lower normal range . FT3 was either below normal or low normal in 2 ( 3rd one wasn’t tested )

Two were tried in Levo , did good initially but then Levo just did t work so they came off it .

Sorry about the long post - but I guess the point is - they guys here were right about nutritional - they saved my dogs .

Please get those tested and possibly thyroid again and look at the whole picture once you have all results 😊

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I've always believed food effects me and have tried many times to get tested as i do think that some intolerance is effecting me . It has been dismissed so many times by the Gp that I've given up trying with them. I take anti histamine nearly every day (which I'm not happy at doing) but if I don't I can itch so bad that I cause bruising ..thought about doing private testing but finding a good one that will be accurate is the next problem. I am going for acupuncture next month and this lady can advise on food intolerances too ..so I'm hoping to get a pointer there . Oh just remembered I asked my GP yesterday about sugar..as if I have cake that must be to high in sugar it makes me so tired that I can fall asleep( he said that is normal which I really don't think is right ) so I do avoid as if I have to drive it effects my consentration badly trying to stay alert ..

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Have you tried eliminating carbohydrates completely? You would be surprised at the difference it makes. 😜

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Yes that's going to be something I'm going to try as well did it years ago and felt really good but that was before levo ..thank you will post how I get on x

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That’s the same as me ! I tried low carb before I was diagnosed hypothyroid and I felt really good. It’s the same old story though isn’t it we feel good assume it’s nothing to do with the diet and we slip back into our old ways!

Like you I don’t think low carbs is going to help with the problems I have now but who knows. When you think about it when we cut carbs we are cutting a lot of gluten containing food which we know is bad for Hashimotos. Good luck and please let us know how you get on. Kindest regards 💐

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ask the endo for ndt

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Cazlooks...its not good to suggest the OP asks for NDT because in the NHS in the UK that gets slapped down

It is possible that will help the OP but lets get the facts and their test results first

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What is a NDT I feel pretty clueless as to what tests i could have ..all I know is what they are giving me isn't doing the job and really think they have had enough time to sort it a bit better after this long

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Do you have copies of blood tests ?

Have

Ferritin

Folate

B12

Vit d3

Been checked as they must be at least halfway in their ranges for your body to be able to utilise the levothyroxine ....putting on weight is likely to mean your undermedicated or not absorbing/ utilising levo

Taking bicarb is not a good idea as it will screw up absorption of vital vitamins

Often with hypothyroid you have LOW stomach acid not high as it gives same symptoms and you need betaine or pepsin with meals

Vital that you exclude Gluten from your diet for at least 3 months too to see if that makes a difference

I suspect you have Hashimotos and a degree of adrenal burnout given your previous lack of sleep lifestyle...what illnesses are there in rest of your much wider family even grandparents

Start now by taking at least 2000mg vitamin C in divided doses every day and 200 mg magnesium glycinate or malate or at a pinch oxide 3 times a day

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Hello

I do take Vit d3 and c in quiet high dose never heard of oxide but will look into that today thank you. Also I will try gluten free as much as I love bread I don't think it is good for me (shame as Ii really do like it which I guess is a pointer as we all seem to like what isn't good for us) I take a multi vitamin but will get some magnesiumas well .

Family history my Mum and now my sister is on Levo. My Mum (and everyone I know on it )has been up and down on the amounts doctor recommends all the time .I must say I did think it odd that mine hasn't been adjusted since the first 3 or 6 months which also makes me wonder what else is going on .Thank you

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Hello

I do take Vit d3 and c in quiet high dose never heard of oxide but will look into that today thank you. Also I will try gluten free as much as I love bread I don't think it is good for me (shame as Ii really do like it which I guess is a pointer as we all seem to like what isn't good for us) I take a multi vitamin but will get some magnesiumas well .

Family history my Mum and now my sister is on Levo. My Mum (and everyone I know on it )has been up and down on the amounts doctor recommends all the time .I must say I did think it odd that mine hasn't been adjusted since the first 3 or 6 months which also makes me wonder what else is going on .Thank you

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Linda, reallyfedup123 won't see your reply because you didn't click on her reply button.

That's magnesium oxide, by the way. RFU is suggesting you try magnesium glycinate or magnesium malate or - at a pinch, because it's not very good - magnesium oxide.

You're wasting your money with a multi-vit. They're all rubbish! You won't get anything much good out of them, but they could could contain things you don't want, like copper, calcium and iodine. Through the multi in the bin, where it belongs, and get tested for deficiencies.

The reason your mum and sister keep having their dose adjusted is because their doctors don't know how to dose! It's not a good thing to do that, and keeps the patient sick. However, there's no guarantee that your doctor is any better. And the fact that your dose hasn't been changed does not mean there's something else going on, it just means that your doctor doesn't know much about thyroid - not many of them do!

But, we absolutely need the numbers, in order to be able to help you. Results, ranges, dates and doses. Results and ranges from when you were diagnosed, and the latest test results (with ranges). When the tests were done and what you were taking at the time. It is very very unlikely that you were given levo unnecessarily - doctors don't do that sort of thing. But it is more than likely that you're not on the right dose, now. Help us to help you, and post the numbers. :)

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Thank you I will ask them for my results ..could take a while to get hem if I can't get the good receptionist..what amount of magnesium glycinate would you recommend as I'm going shopping and will see if I can find it if not will order online

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200 to 300 mg. But I doubt you'll find magnesium glycinate in the high street shops.

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I've also just sarted to make my own kefier water thought that could help as well

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I'm afraid I know nothing about kefir, but a lot of people swear by it. :)

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Linda

Sadly most GPs are clueless about Thyroid and especially Hashimotos Hypothyroid

Levels of antibodies vary all the time but once on a stable dose of levo with vitamins and minerals at correct midway levels the last thing that should be done is alter the levo dose that just upsets the whole applecart

Going completely Gluten free is now utterly vital ..watch everything you eat ...change to a totally fresh fruit,salads,veggies,meat fish eggs and maybe milk and cheese diet ....avoid everything the food industry produces forever now

Gluten stops your body absorbing iron and vitamins and sometimes dairy (milk and cheese) also have to be avoided but get the gluten out of your diet now

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I've been shopping and have G free bread and fruit crackers to take to work as that is the hardest part of the day and so easy to pick something bad up then

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Yes although do be careful it is possible that grains of all sorts are giving you trouble

I do know that Sainsbury's did a nice fruit loaf that was not pricey ....try to stick to fruit and salads if you can as much as possible

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Yeh I will do I love my veg as well and I think apples pears and bananas bother me a bit with the sugar .. I've got the bread for work as don't always get chance to stop for food when I actually want it so at least with a sandwich and boiled eggs can eat that whenever.thank you so much for all your help

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It is common for thyroid problems to begin or be exacerbated by a shock of some kind. I think it's because stress affects the immune system, and most hypothyroidism (about 90%) is caused by your own immune system trying to destroy your thyroid. Once this process begins your thyroid gradually becomes less and less effective, so over the years we need a higher and higher dose of thyroxine. This is why your doctor should be giving you an annual blood test and increasing your dose if necessary. You do need to get a new thyroid blood test, and post the results (you have a right to a copy) with the lab ranges, on this site for members to comment on.

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I have just had one that is when he said he doesn't believe I need itand that he would never have prescribed me for levo . I need to get a print out to put up here of great results ..

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Before paying for extra tests I would wait and see what the Endo does. A decent one should do the ones you need. He will send copies to your doctor but ask if you can be copied in. If you asks why then say you are interested in learning all you can so you understand more.

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Try going gluten free and get your blood test results. You might need more thyroxine. Also check iron, ferritin, folate, B12 and D.

Karen

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Just realised I did I've been in levo for 5 years I've just seen a post I put up before it is 3 sorry 5 years is when I went bad and took me two years of going to Gp untill they gave me anything

Oops

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