Thyroid UK
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Personality changes ?

Does anybody else feel as if their personality has completely changed? And that u feel a shadow of your former self? I don’t bother telling anybody how I’m feeling no more fed up of being brushed off and then making out to be feeling the same as me? Yes this sounds selfish but I don’t even like myself no more 😭😭 sorry ranting x

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Hypothyroid affects every single hormone in the body so yes it will affect the brain too

If only the entire medical world would recognise that the Thyroid is the Conductor of an entire endocrine orchestra and that includes some 40 hormones in the brain alone

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I just feel like I have no interest in anything at all, dunno why 😐 I just wanna feel normal for once but it seems like I am doing everyone’s head in tbh 😳

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I know EXACTLY what you feel like because I felt like that for years. I am so entirely certain in changes your mood and personality because I'm finally properly medicated and I feel like an entirely different person. For years I literally thought I was unmotivated, slightly neurotic, anxious and VERY introverted while as it turns out I'm none of those things (well except just a little introverted). Don't underestimate just how much thyroid controls. Like the above poster said - thyroid hormones affects EVERY cell in our bodies. Once it gets out of whack, the consequences are numerous.

Keep fighting to get your medication right and use supplements and adrenal support if needed. We are here whenever you need to talk.

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Thanks, it’s nice to know I have people to talk to! Who understand 🙂

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If you are not feeling yourself then something is wrong with your treatment. The aim of taking thyroid hormone replacement is to be free of symptoms. Have you got recent blood tests you could post?

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I don’t have my blood results off my gp I did ask once but the receptionist did not look happy and I’m not the type of person to argue with anyone 🙈 I will ask next time when I see my gp, but I have been referred to an Endo too so hopefully they will be more helpful.

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You should be able to set up for online access with your practice enabling you to view test results (and also make appointments, order repeat prescriptions and view brief medical details). Ask them about it and they will probably give you a form to complete.

I agree with how you feel and I often get fed up with myself! I’m in early stages of being treated, so levels of meds aren’t right yet and I can see how depression can be a symptom of thyroid problems. I just want to feel normal again, but feel it may be a long process.

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Me too, was diagnosed last September, was on 150 Levo but now on 100 as I was having problems while taking it, how long has it been for you ?

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I was only diagnosed 7 weeks ago and put on 25mcg (no difference). I ended up getting my own bloods done so I could push for that and have since had my own vitamin bloods done showing I'm not at optimal levels. I'll be self supplementing for vitamins (following advice from on here) and then push for increase in Levo at GP 3 monthly review. I hope you start to improve soon.

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Thanks you too! I was put on 25 to begin with too, then I saw another gp, he said I should’ve been put on 50 to begin with, so he then put me upto 75(increase of 50) I felt hyperactive for a few days it was weird 😳

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I was started on 25mcg every other day! 15 months ago. It was truly pants.

Now in the process of moving from 100 to 125, but breaking the 25mcg tablets in half to get 112mcg for a few days first.

I feel so tired.

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I am sure I felt better before starting Levo tbh 😳 I wanted to sleep all the time now I’m just anti social and I worry and stress over the slightest things😖I hope it gets easier for you!

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You too. I'm feeling worse these last few weeks than I have for a while. I definitely feel worse now than before I started. But first thing in the morning the past 2 days with the slightly increased dose, I've got up and done a few cleaning jobs. I've not done that for ages (house is a pit). It just wears off very fast. Now I'm exhausted, brain fogged and with a headache.

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The brain fog is awful, if I do anything that requires me to concentrate or think 🤔 I really struggle and my memory, well..... shocking 😳

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25mcg is an incremental dose unless frail with a heart disease. 50mcg is a starting dose with blood test every six weeks and they should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This helps keep the TSH at its highest as it drops throughout the day or after food and can mean the difference between getting an increase or not.

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Yes it was a low dose but my TSH seems to be extremely slow getting back to normal levels? Was still at 6 after being almost 12 months diagnosed at 20TSH, am now on 100mcg (reduced from 150) due to these awful symptoms 😳

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When diagnosed my TSH was 100. Levo made me fell far worse even though TSH was dropping. I was forever in and out of A&E at any time of day or night for awful palps. Cardiologist was puzzled and was considering putting a recorder (cannot remember proper name) into heart but haven't needed to nor have I gone to A&E since. When T3 was added to T4 I felt an improvement - as if oxygen got into my whole body. Some people don't improve on levo but may do on a combination. Research has proven many do better on T4/T3 and some members have also switched to the original (NDT) and recovered.

T4 is an inactive hormone and it has to convert to T3 - the Active hormone required in our billions of T3 receptor cells and heart and brain have the most. The aim is increases until TSH is 1 or lower not somewhere in range as most doctors seem to believe.

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Wow!! 100? You must’ve felt awful 😳 bless you! My gp said he wanted the level below 1, I am having trouble working out these T4 and T3 things 😐 lately I am having trouble comprehending or concentrating !! 🙈 sorry

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Just for info: Not all surgeries or rather areas in the country are set up for online access. This service is still being rolled out. Mine is supposedly; I was given a password to get access but it doesn't even give access to records or anything useful.

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I have w feeling mine is like this too 😳

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Ask in the surgery. When I subscribed to the system I just had online appointments and repeat prescriptions. When I asked she saw it was not enabled on the system for me to see my records, jist a simple click fixed it.

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Thanks. I had asked. I know this system is still being rolled out across the country and at the moment some areas have more functionality than others.

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You should be able to access your medical records - not full records, but documents and blood test results. Go back to the surgery and ask them. The change to the new system, didn't give me access to my full blood tests. I just asked the surgery and the office manager changed the settings, so I now have the access that I had before. Worth a try.

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Thanks. I had previously asked and was told that access wasn't available at my surgery. I've just phoned to check again and was told that it is actually available but I need to fill a form in. There is, supposedly, currently functionality to request certain information; such as 'records'; by clicking 'add.' This is supposed to alert the surgery that you are interested in having access but it seems that part of the system is not working as I'd done that some months ago, then chased it up at the surgery. Perhaps it depends which receptionist you speak to :-/

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I would pursue it. Ask for the office manager. They should be able to give you the access you need. Either call in person or send an email to ask for the broadest access allowed.

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I am able to go to the surgery and fill in a form to get access. But online you are supposed to be able to 'add' a function and the surgery is supposed to be notified once you do that (at our surgery) However when I did that months ago I never heard anything from the surgery so called them - it seems that functionality doesn't work. At the time though I was also told that their system didn't allow for access to records. Now it seems it does but whether that's because the system has been updated to do so or I was given duff info at the time, I don't know. Thanks for the info.

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We are entitled by the LAW to get copies or print-outs of our own blood test results. So don't be embarrassed in asking for YOUR own blood test results and tell the doctor to tell the receptionist to give you a copy when you ask for your own records. If he says anything say you want to help in your recovery and are learning about how the thyroid gland works.. They may charge you a small sum (mine 30p per sheet) for a copy.

Some receptionists don't know that we are entitled to our own results.

Are you aware that all blood tests for thyroid hormones have always to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take it afterwards. This helps keep our TSH at its highest as that seems to be all the doctor looks at and may prevent a reduction in your dose. The TSH is from the pituitary gland - not the thyroid gland..

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Have UAT and feel horrible all the time, am 60 have been taking Thyroxine for 24 years (currently on 75mcg, and felt worse when I increased it). Whenever I get my blood test for TSH (the only one they are prepared to do, they refuse to do any other), they also say I can get a blood test any time, and I don't need to fast?

I did manage to see an endo 3 years ago in April 2015, (he was useless, sweating profusely, he looked like he hadn't slept for a week, and was swigging from a large coca cola bottle - I actually felt sorry for him!!) He said he couldn't prescribe any T3 or NDT, (NICE guidelines and all that!) He did finally test for Free T3 and Free T4. At the time my TSH was 0.84 (range 0.55-4.78) Free T4 was 20 (range 11.5-22.7) Free T3 was 4.5 (range 3.5-6.5) and TPO antibody was less than 10 (negative). So everything was "normal" in their eyes..

Three months later my own GP (at that time) tested for Free T4, the only time they have ever done it. My TSH was now 0.16 ((range 0.20-6.00) and Free T4 was 23.4 - (above range which was 11.0-22.0)

As my Free T4 was out of their range, he suggested I lower my dose of Levo to 75mcg instead of 100mcg. Over three years on am still struggling, they say it's all down to my Fibromyalgia, (which I was diagnose with in 2009), so can't get anywhere really - soooo frustrating!

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You may be interested in the following:-

verywellhealth.com/the-thyr...

If you can, get both Free T4 and Free T3 tested. GP may not but you can get them privately. Read about the frees on the following:-

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

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Thank you Shaws :-)

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Is Genova better than Medichecks or Blue Horizon, and does they give better information about the results of the test and what they mean? I am definitely going to get one done, but just not sure of where would be best?

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They are all equal I believe - Blue Horizon I've used and is the first I believe. Medichecks is the second and the others are relatively new. By using them Thyroiduk.org.uk get a small contribution towards running the office etc.

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Thank you shaws, I will have to ring them, I had my dose reduced to 100, just until I see endo? They have told me I had antibodies but no test results to check everything out.

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I said to a receptionist it should be fasting they disagreed and made me feel a right tool with ten patients behind me. the doctors up and down my meds like it’s a game not realising the effects on my body hot cold palpitations hair loss and more they are so blasé about it and very dismissive. Iv heard they learn about the condition for a fraction of their studying it’s not nice to wish bad on anyone ha ha but I do wish it on them for week at least the ones who look at me like I’m a hypochondriac the mental side of it all was horrific cost me everything

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I agree, let them spend time in our shoes!! The mental side I’m finding hard at the mo, even when good things happen I’m just like meh! Emotionless and empty??

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When I was at my worst I wouldn’t let no1 near me except my little boy nothing gave me pleasure at all there was just a little black cloud over me and an inner feeling of I’m dying I really felt doomed and weirdly dirty and a shower or even a long bath did nothing

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I get what your saying 🙈 it’s such a horrible feeling😬 feel constantly on edge today and that weird feeling inside my stomach! Can’t describe it 🙈I overthink everything and get totally irrational a LOT! Just feel like I’m going to end up pushing everyone away 😳

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It will get better you will get lots of tricks from people on here talk to your doctor about your mental state they may give you something to help my whole life crumbled I got very angry at nothing and jumpy

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Thanks, I am already on antidepressants anti anxiety meds! The anger thing I experienced too! Hope u are feeling better now

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Thank you hope you get better quick xx

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If you want an early morning blood test done don't mention you want it because you need to do a test fasting. (Although you may intend to fast.)

Instead say that you have a lot of work commitments that you can't avoid - stock-taking, appraisals, a delayed contract, anything at all - it doesn't have to be true, just make it sound plausible. Then they should give you a test which is early enough.

I have struggled to get early blood tests for years. My husband was in his office clothes when he went to the doctors recently. When he came out of his appointment and said to the receptionist that he needed an appointment for blood to be taken he was offered an appointment at 8.30am. Grrrr!

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Hi I have obtained some of my test results although not sure which ones to put up on here 🙈

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Have done a separate post with blood results included

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You are legally entitled to your results, just tell the receptionist it's your right to have a copy or register online. When you visit Endo, get a printout of your results and insist they include lab ranges. It's more difficult to get copies of results from a hospital setting than from GP.

You will get back to your normal self once optimised on thyroid hormone with good vitamin levels.

Check you are on a Levothyroxine that suits you. They are not all the same. Always stick to the same brand and don't let the pharmacist switch them. Find the one that suits you and stick to it.

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Have posted blood results on a separate post

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Yes. I used to be a strong, confident happy go lucky person but now I'm often anxious, always tired and, quite frankly, a bitch to my kids sometimes. It's as if the past year has robbed me of who I am. I'm sorry that you feel crappy as well. Hopefully effective treatment will help you x

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I understand and I feel exactly the same it’s like someone else has taken over my whole personality and mind, it’s mad and so frustrating x

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Try to get a Free T4 and Free T3 test because we need both to be near the top of the ranges - not middle or bottom.

Nicola38 Feebs sunsetalley

T4 is an inactive hormone it has to convert to T3 and sometimes we aren't on sufficient. T3 is the only Active Thyroid Hormone and is required in our billions of T3 receptor cells, particularly brain and hear which contain the most T3 cells.

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I am due another blood test end of Oct for ai thyroiditis and CRP? No idea what CRP is?x

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Had pituitary tumor 1994/96 continually told oxford of this and more. But basically its a drug that has no alternative. So they used to tell me theres nothing they can do. Go nd see your doctor. You have my understanding and sympathy. Best luck. 😳

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Thanks, hope your ok 👌

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Ive been on thyroxine. Hydrocortisone. Genetropin( growth hormone. ) testosterone. Since then. The only thing that has helped me is going back to places where i was me. And remembering my personality by photos etc. Like a step back in time. 😎

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Wow, you still have to take them now? That’s a good way of trying to get back to yourself👍🏻

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Ihave to take them for rest of life. The second opp also took away alot of my sight. STILL I IS EAR. Am now 47 and got 2 daughters and a pucca grandson of 2. That really is a tonic. I swear every time i see him he takes a year off of my age. And life well lets face it might get hit by a bus tommorrow.

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Oh sorry to hear about your sight! Glad your grandson is keeping you on your toes 🙂 and yes your right about the bus thing lol

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Looking at old family pictures with happy people is really helpful to remember life hasn't always been so bleak.

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I am 60 early next month and I get so frustrated with my inability to work things out I jump up and down with temper. I know i’m not who I was but I have got used to it. Laugh and the world laughs with you, cry and you cry alone. No one likes a whinger... 🤨

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I know the not being abl to work things out too well lol, forever losing things lol, am trying not to whinge too much 🙂

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I feel the same, I don't know myself anymore, I'm really confused.

Nanaedake is right, when our treatment is not optimal it happens.

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It’s horrible isn’t it ? Hope your ok anytime u need a moan I am here 🙂

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Thank you for your kind words🙂

I feel so much better since starting treatment with levothyroxine but there's still room for improvement.

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I’m glad your finding the Levo helpful and I hope you feel much better soon 😊

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I totally relate to this, I spent the time before diagnosis wondering what was wrong with me and after diagnosis, recognising my mood swings, insecurities, dislike of many things and people is just not me. I’ve not given up, I have an endocrinologist appointment this coming Friday as my doctor refused to test for T3, even she got a taste of my mood swings!🙊 I do find it’s easier to talk about my grumpy nature with people, it’s surprising how many people don’t actually see it!

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The insecurity thing I get 🙈 I feel sorry for my partner ! Hope your endo appt goes well! 🤞🏼

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Me too, thanks for the wishes! I guess no need for me to be pushy as I’m paying private (lucky enough to get it through my job) but looking forward to getting proper help, really thankful to this group for pointing me in the right direction. Good luck with your battle through your thyroid related issues! 😊

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Thanks 😉 you too 🙂

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When I was badly overt I was amazed what I got away with! Most people must be in their own little bubble busying away, with themselves at the centre of their universe and not take great notice others much, or changes in their behaviour.

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Emotional lability and psychiatric symptoms are part of thyroid disease and are often the first symptoms. These symptoms take the longest to settle even when remission is achieved

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I am taking duloxetine and pregabalin also propanolol, they kind of keep me calm but I don’t think they are doing much for the mood 🙈

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Propranolol affects thyroid hormone uptake

Ask GP for a different anti anxiety medication

I was stuck on it 20 years until went strictly gluten free diet - see my profile

Gluten intolerance is extremely common with Hashimoto's (autoimmune thyroid disease)

Gluten can cause anxiety

verywellmind.com/gluten-and...

ncbi.nlm.nih.gov/pmc/articl...

Propranolol can lower parathyroid levels and this can cause increased anxiety

See "anything else I need to know"

labtestsonline.org.uk/tests...

Propranolol may lower magnesium levels

When hypothyroid we often have low vitamin D and low magnesium levels anyway and especially if gluten is an issue

Getting vitamin D, folate, ferritin and B12 tested is essential

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Thanks slowdragon, I never knew that beta blockers did this !! You’d think that the GP would also be aware of this! I’ve been toying with the idea of going gluten free but I need to look into it as I am a terrible eater 🙈 I’ve had all the blood tests for other deficiencies and all clear(bar enlarged red blood cells which the doctor said was caused by the thryoid??

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Can you add your actual results and ranges for vitamin D, folate, ferritin and B12

Just being within range is often not optimal

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Hi slowdragon, have done another post with test results attached

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Gluten free is MUCH easier than you might think

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I don’t have the actual results unfortunately but am due another blood test in 6 wks, maybe if I try ringing surgery and asking for copies of them?

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Give surgery a ring Monday and request print out of most recent blood tests. Allow couple of days before you pop in to pick them up

You are legally entitled to copies including ranges on test results

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Thanks I will give it a go 🤞🏼

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Enlarged red blood cells 'caused by thyroid'....

Hmmm - no, that's not exactly a given...

This needs further investigation as you may have a condition that sometimes 'comes along for the ride' with Hashimoto's. You need to know your b12 results as there is a possibility with macrocytosis (enlarged red blood cells) that you have PA (Pernicious Anemia) or could at least be very deficient in either b12 or folate due to terrible stomach absorption (low t3), coeliac disease or drug interactions (such as PPIs). If you're deficient in b12 it can be really, really bad for mental health and injections of b12 are the preferred solution (no oral supplementation until you know for sure).

Here are the symptoms of b12 deficiency, but best start a new post on the sister HealthUnlocked forum for PA if you suspect you may have this... as they can advise on blood tests and ranges.

telegraph.co.uk/health-fitn...

b12deficiency.info/signs-an...

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Hi I was tested for B12 and folates plus ferritin and FBC it all came back within normal ranges? I Don’t get it 😳

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'Normal' isn't the same as optimal and that's what we should aim for especially if we're symptomatic.

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Many people in the know are troubled by the low standards we have regarding normal range for b12. It's possible to get deficiency symptoms almost a quarter of the way through from the bottom of the normal range.

I also noticed that you're being tested for CRP - that's C Reactive Protein. This means that they want to check you for inflammation (that can cause heart issues). When you check your results you'd ideally - perfect scenario - want this number to be less than 1 (in a healthy person). Anything greater than 3 is not a good indicator and suggests greater cardiovascular risk. My CRP has recently gone down to less than 1 - obviously I'm really pleased with this so I feel like shouting from the rooftops!!

Here's a scientific paper that shows an inverse correlation between dietary Magnesium and CRP i.e. greater Magnesium intake lowers CRP (inflammation).

ncbi.nlm.nih.gov/pmc/articl...

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Thanks HLAB35, very informative, although I have no idea why she is checking my CRP! I’m glad to hear that yours is better though 🙂

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Could be that they're trying to rule out any rheumatoid arthritis...? Not sure, well at least they're being reasonably thorough...

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Thanks, although she didn’t mention anything like that! They don’t seem to like explaining things too much tho lol

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Going gluten-free means avoiding anything with flour or wheat. It is more easier than I imagined. There are many gluten-free products in the shops now and we can also bake cakes etc with gluten-free flour. I don't like gluten-free bread. Instead of pasta we can replace with rice.

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Is that just beneficial towards Hashimotos or hypothyroidism? That’s the prob lol I love pasta and I love bread !! Suppose I just would have to get used to it tho 😂

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Wheat is possibly addictive - according to the guy who wrote 'Wheat Belly' - says it has opiates. Quite a bold accusation!

I'm not sure I was addicted - just had blood sugar lows a lot of the time.

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Grrr just spent ages on a reply and HU trashes it... give me strength to try again could not even copy it to paste again....

I know exactly what you mean I was two dimensional like a shadow of my real self on Levothyroxine despite being supposedly optimised (TSH 0.25 - 0.5 so nothing insane there). It was just awful. I found NDT got rid of all of that horrible feeling and a shed load of other nagging symptoms. I have DIO2 gene mutation making my conversion of T4 to T3 very poor so that could explain it. Have you tried T3 with your T4 or NDT? If not it is well worth a punt

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Hi, I’ve never tried t3 is it prescribed or do you have to buy it?

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It is very difficult to get prescribed but it is possible. Usually a small amount of synthetic T3 is added to T4 (levothyroxine). Some people here take T3 only, but that is unusual. Optimal dosing can be tricky. The other way to get T3 is to buy NDT (natural desiccated thyroid) from pigs. It was the original treatment for hypothyroidism. It naturally contains T4 and T3 and some other things (T2, T1 and calcitonin in unknown but small amounts) which are what our thyroid makes in slightly different proportions which our bodies seem able to correct to our needs. Optimal dosing is pretty straightforward. It used to be prescribed on NHS but has become almost impossible to get from the GP. Most people buy it on line. For these reasons ie. a whole lot of hassle and expense often leaving you on your own, if you can get well on Levothyroxine it is a lot simpler, free on prescription and you should get proper medical support. You said your TSH is 6 in a post 8 days ago that is a long way from optimised and why you feel so unwell. It needs to be dramatically reduced. Hope that helps..

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Yes I do feel the same. I've been in ever increasing amounts of Levothyroxine as I age.

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Sorry to hear, I guess levothyroxine doesn’t agree with everybody! I understand what your going thru x

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I just read your other post - your poor thing! I would say you need that TSH below 1 on Levothyroxine 6 is absurdly high and will make you feel very unwell indeed. I only took NDT after 2 years on Levothyroxine with a TSH of c. 0.25 and still feeling rubbish. Relatives with hypo have been fine on Levothyroxine so I was unlucky with it not suiting me. If you still feel bad once dose is optimised you might have a conversion issue and could consider NDT. I doubt you will afford the DIO2 test and you have to pay for NDT. Let’s hope you are just badly undermedicated.

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I've always said since diagnosis last year I'm not the same person and have felt robbed but I have got more understanding and compassionate towards other peoples problems instead of saying"yeah yeah, I surpose we are all still in there but waiting to be allowed out again. We will get there.🍀🍀😁

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I know what you mean !! I was diagnosed last year too, the TSH seems to be taking awhile To go down!! But getting there

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It has not been managed very well then, if mine was 110 and got down to 0.2 in 9 months which I thought was glacial progress! I had a good Endo too, I was so overt by the time I was diagnosed (not for want of trying over the decades 🙄) and very poorly I was put under his care quite rapidly. I was told it would take about 6 weeks by GP - it did for my mother and sister but not me. I hope you get your medication optimised soon.

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😮 110 is so high you must’ve felt so bad !! Mine was only 20, the docs keep asking me if I am taking the Levo everyday, I did have a bit of a mood swing a few wks back and just stopped the Levo mind which I said in my last post..🙈 the hot flushes and soaking night sweats were Sooo horrible 😭 or it seemed every time I’d close my eyes to sleep, it was like someone turned a tap on never even seen anyone sweat like it 😖 I have a few contradicting symptoms which are the opposite of hypo! It’s just so confusing and my brain just can’t seem to take anything in atm 😳 I cant believe how fast your TSH went down still tho !! Gp has reduced my dose by 50 now

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It was too horrible for words I went absolutely crazy it was terrifying with hideous hallucinations and thinking people were following me - ultra creepy stuff, and so cold I thought I was going too freeze to death. I got quite mixed symptoms too, some more akin to hyperthyroidism including eye problems, anxiety, heart pains/anginas and being drenched with hot sweats in the night, then freezing cold again. I still get slight bouts of overheating but nothing like what I suffered then. I had to have very slow increases of levothyroxine of just 25mcg because of the angina. It did improve things but I never felt properly better. The loss of personality was probably the worst aspect for me and it did not resolve, even after two years on c.125mcg levothyroxine. It is one crazy disorder for sure! I would try and stay on the thyroxine not suddenly stop it as that can cause more problems for your body. You don’t need a reduction in medication you need an increase.

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Sounds like a nitemare!! But I guess it is!! I am getting a lot of break outs in spots around my mouth and nose, some are around my eyes, I have been quite the opposite to constipated, even getting woken in the early hours some nights by stomach cramps and legging it to the loo 🙈🙈 I get lots of heartburn and indigestion also? It’s crazy how many symptoms we experience !! Have had no serious sweats for at least a week now 🤞🏼 They seem to have been occurring around my menstrual cycle and I get the most evil PMT ever🙈 are you Hashimotos?

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Yes, mine is called atropic (no goitre) autoimmune thyroiditis. I

Don’t think they like calling it Hashimotos here but it is sometimes listed as a variant separate to Hashimotos in scientific papers. I had bouts of overactivty but mainly I felt very hypothyroid. I don’t have any thyroid function now as far as I know, hence the really dreadful symptoms like hallucinations which are late stage ones. I sounded like a darlek as my voice went very deep and almost electronic in sound. On ultrasound - about two months after starting medication - my thyroid was completely shrivelled, very tiny and unlikely to have any function according to the Endo. I remember getting endless boils in my ears, on my neck and face, as well as mouth ulcers ++. My moods were haywire shouting and yelling one minute, crying the next then feeling normal and thinking that was a bit odd but my mind was like a butterfly flitting here there and everywhere and I could not keep a thought in my head for more than a few seconds. I was just trying to get through each moment in pure survival mode. I was mainly constipated, and I am sorry about your night time guts problems sounds horrid. I did suffer badly with PMT and grotesque period pains but I had gone through the menopause by the time I finally got a diagnosis. I’d asked for over 10 years if I might have hypothyroidism, because my mother had it and some symptoms were similar to hers. I was just told it was the menopause. One doc did do a thyroid function test (early on) but I was told it was normal and I thought I was just a hypochondriac and imagining it all. I had problem after problem it was wearying. I never actually saw the results to determine if they were normal - knowing what I do now. I might ask if they exist in my file and try and get a copy, but I know a lot of my notes were lost around then.

This post has been very revealing as to how many people have had it affect their personality - I used to feel so alone with it but there are many others with this problem. My feeling is it is mostly down to lack of T3 either through inadequate thyroid replacement hormone T4 or more rarely poor conversion of T4 to T3. Pretty easy to fix - so both shocking that so many are not being helped and hope giving in that it is possible to improve.

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Wow they are some crazy symptoms !! 😖 bless you!! It must’ve been awful but I’m glad you are feeling better now! Yes it’s nice to know that we aren’t alone! I have a feeling the endo will be just as useful as the doc tho 🙈🙈

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I can relate in more than one way to the messages from this post.

|There have been more than 6 years now since Basedow-Graves was diagnosed on me, and functioning to a new normal for the last 2 of them.

But the changes started well before being diagnosed, I would guess almost two years before. It started, guess what, with cognitive and behavioral changes...I was unable to focus, concentrate, unable to read a page, memory issues, patience, overall personality instability and introducing of darker moods, the type I have never experienced before.

After being diagnosed it came out as a galloping case of this disease, with wild symptoms and side effects (TED also) so had to briefly decide for the TT (will never question that decision as I had no choice, the waiting game was clearly dangerous)

The post TT years, introduction to T4 replacement therapy were even more nightmarish than the first year, probably because from diagnosing to the TT there were only 7 months, dark but limited. And then the new dark came, the hypothyroid one which is softer but harder to bear, a long torment where everything faded to minimums I never thought I would face. Yes, this came with various physiological impact and personality changes derived from this, as well as from the ordeal itself. I know I"ve had to put out every coping mechanism I've had to get through this stage. How could I've been left untouched after this?!? It changed me, for good, but I don't consider it a bad change. I have restructured very intimate things about myself, my internal references systems and external relationship with others.

Then I got lucky and managed to steer the whole situation into better, got increasingly more confident and managed to have control over symptom and their long lasting, reasonable relief. This was a stage that brought even more change as I am now quite protective over this new won state of being and QoL. What do you think, this had an impact on my personality and behavior? Of course, and it is not only physiological.

Yes, I am changed, in some parts clearly for the better, in others not so much, for the coping mechanism I had to put in place in order to compensate losses of the former me (my memory and cognitive states will never be the same after this adventure and I am not getting any younger) but I am at peace with what and where I am now and, most importantly, I can recognize the good effect that this Graves thing had on me and see the good part it had in my development as a human being. I chose to embrace it and play with the cards that I have. No regrets, no feeling sorry for myself. But changed for good....sometimes for the better and sometimes for the worse. Similar to what happens to conscientious, healthy people as well, wouldn't you say so? And without stopping to change, adjust and struggle for the better....again, like regular, conscientious people do, right? Harder, forced, but the same process...

That's my 2 cents over this. Acknowledged, embraced, adapted, no regrets. Moving on...

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Wow! Nice post, I’m glad you feeling that way! I guess it’s a long road for us all at first, but we will eventually learn to cope with it?

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Yes, it's long and not quite easy to walk this path. It has been an actual rollercoaster, but as the times goes usually the things tend to move into the better side.

At least this was my experience. A life changing experience, to be honest....

The key is to keep on searching and fighting for getting one centimeter (inch? :P) at the time towards of getting better.

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Great attitude! I feel similar, but was determined to try all options to see if I could improve my condition. I feel a different person on NDT not far from how I was before hypothyroidism started galloping me towards death. Only very minor things remain unresolved. Have you tried other options than levothyroxine?

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I haven’t tried that no, I have a lot of financial problems atm among other things, life lol !! I can’t afford it, unless it is prescribed?

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Pity. It used to be very affordable but the price has skyrocketed of late.

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Nicola38 If you get the Thai brand NDT its not that expensive, mine works out at 18.5p a day so that’s just £5.55 a month

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Thanks, so do You still take your Levo with the NDT? 🤔

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I’m not on Levo ... just NDT

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It's good that you are seeing an endocrinologist now, but they won't be trained in knowing much about vitamins and minerals that help. However, they can test your antibodies. These could easily be high and if you have Hashimoto's - then you know that you have an autoimmune illness which is means that you probably also have inflammation. Inflammation is linked to depressed mood (see below). An endocrinologist can also check your adrenals, which, may be going a bit out-of-synch with your body clock. This happens a lot when your thyroid is not optimally treated. There are things that an endo can test - your cortisol levels, for example, with a 24 hour salivary test. They should also check if you're deficient in b12, folate or iron and vit d - any deficiency or low-in-range 'normal' value in these can disrupt mood.

adrenalfatiguesolution.com/...

Another problem is with your absorption of vitamins and minerals. Basically, active thyroid hormone, t3 is needed to make our stomachs acid enough to digest proteins and if we have low thyroid hormone we can get bloating due to only partially digested food going into our guts. It's a lose-lose situation as it's the vitamins and minerals (zinc and selenium, for example) we get from some proteins that can help convert our levo into active thyroid hormone. The only way around it, is either to take t3 / NDT or to take things that'll help you convert and to have something that'll help digest meals. This bloating can cause psychological issues... specialist doctors are now making the connection between gut problems and mood. A lot of alternative treatments for the gut are being touted about these days, but I found that eliminating gluten was worthwhile for me.

Taking Magnesium is a good idea - it just generally calms you down and makes you less obsessed with negative thoughts or reactive to stress. Magnesium is an anti-inflammatory and research now shows that inflammation is directly linked to our moods. Hashimoto's is an autoimmune illness - autoimmune illness brings inflammation of some kind or another. Magnesium Citrate is a popular choice. I take it, and my mood is a lot better for it.

dailymail.co.uk/health/arti...

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Thank you, that explains a lot and it’s useful as I wasn’t knowing what to expect at the endo appt, my gp told me that I tested positive for antibodies but never explained anything really

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excellent information. 👍🏻

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I certainly don't feel myself if I don't get my T3

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Maybe that’s what I need 🤔

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If you are not optimised then the T4 you are taking will not be adequate to be converted to the T3 you need for proper functioning. If you become optimised (TSH 0.2-0.5 free T4 and free T3 in the top third of the range) and still feel ill, then lack of T3 could be the problem due to poor conversion.

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Yes, although I was ok-ish before a new symptom, possibly thyroid-related, occurred several years ago.

At the moment I feel half-dead!

I empathise.

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Thanks, me too, it’s not nice 🙁

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No don't apologise! Yes I totally agree with you regarding feeling like your former self. It does sound like you're not at your optimum health and that's how I used to feel when I felt exhausted from everything and wasn't treating my body well at all. The best thing to do is to realise that this isn't 'you' at this current moment and it's completely okay. You're not well and your closest friends and family should understand that. If they don't then you have every right to focus on yourself until you get better because you have to put yourself first, and keep reminding yourself that YOU are still in there! You just need to find the right treatment and lifestyle for you to feel like your former self, and trust me it is possible. Try everything, use this forum to find out the best solutions for you. Not everything on this forum may suit you but it is all trial and error (within reason of course!) until you find a method of treatment that suits you. Don't give up, there is always light at the end of the tunnel :)

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Thanks, I actually lost my best mate because of the way I’ve been😔 not many people are understanding, I’m lucky my partner understands, but I get very irrational with him 😮

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It's not your fault again, maybe once you're better you may rekindle your friendship with them, but you have to consider how much your friendship is worth seeing as they couldn't be there for you during your worst times. I've lost many friends and some close family members because they didn't understand, but you have to plough on and remember that you must come first. I'm glad to hear your partner understands, remember to talk to him when you need someone to talk to, and don't feel like you're being too much! Honestly keep working at your health, go through as many doctors as you need until you find the right one, or read as many forums/books to self-treat yourself, it will be worth it in the end.

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Thanks, it’s hard not being understood isn’t it? It just makes me feel like a hypochondriac 🙈 my family aren’t overly understanding but my aunt was also hypo, but she never had problems like I encountered, I hope you are feeling well 🙂

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I had problems like this for years. Now I am on T3 with my Levothyroxine I am back to my old self ( most of the time). The NHS has refused funding so I have to get a private prescription for T3 from my Endocrinologist.

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Thanks I’m glad you are feeling better, maybe the endo will recommend t3 when I go, I’ve heard of a lot of people taking t3 and finding it beneficial 🙂

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How much does T3 cost DotL?

Thx

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It’s very expensive in U.K. so I send my prescription for 20mg Liothyronine to Germany where it costs about £30 for 100 tablets.

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Sorry late for me 20mcg obviously DotLeeds

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Thank you Dot- so do you get a private prescription from GP and then send it directly to a German pharmacy ? How do you find one?

Also what dose of Levo were you on before you started?

How long do 100 tabs last?

I had heard the MHRA allow you to buy from a uk wholesaler provided you have a private prescription. Did you or anyone know this?

Thank you

X

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A few German pharmacies are listed here:

thyroiduk.org.uk/tuk/treatm...

How long 100 tablets last depends on how many you take each day. Some take a fraction of a tablet; others take more than one tablet.

A wholesale licence does not, so far as I am aware, permit supply directly to anyone other than a pharmacy.

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Thank you Helvella

Perhaps that’s what my friend meant- that uk wholesaler sends to uk pharmacy if you have a private prescription? I will find out.

Good point about how long T3 will last!

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I would be amazed if any UK pharmacy didn't charge much more than the direct-from-Germany route. There is no form of price control on medicine importers and they will put on a significant mark-up - whether the actual product is one they regularly supply or is a one-off, from USA, Germany or anywhere else.

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You are probably right!

So do German pharmacies send direct to your home ? Or via a uk pharmacy?

Thx

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Directly to you. It is the exact parallel of UK pharmacies - which can supply to you in person or delivered to your address by their local van, or by post.

The only real difference is that their willingness and ability to accept UK prescriptions is based on the EU cross-border pharmacy rules (which could disappear on 30 March 2019).

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Thanks. I guess I’d better get an order in soon. Seeing endo in October

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I was on 125mcg Levothyroxine before starting with T3. I felt under medicated but blood tests said I was over medicated. I was referred to an Endocrinologist as my TSH had been way below range for years but I still had symptoms. I had a 6 week trial of T3 on the NHS and all my symptoms disappeared within days. However NHS refused funding. I get a private prescription from my Endocrinologist and I send it to one of the companies listed on the Thyroid UK website. I take one 20mcg T3 a day. Levothyroxine is now 100mcg for 4 days and 75mcg for 3 days each week.

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Thank you DotLeeds

If my endo agrees I will try the same approach as you.

I love the fact that your symptoms disappeared within days- what symptoms did you have?

Has your T3 dose stayed the same & for how long?

Might be easier to message you privately.

Thank you for giving me hope!

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My T3 has remained the same dose since I started it in January this year. My symptoms were very painful joints, particularly knees and hips, tiredness, difficulties thinking clearly, anxiety, blurred vision and a persistent tenseness in my neck and shoulders. I had difficulties getting to sleep at night, often awake until 2 or 3 in the morning despite being incredibly tired. I now feel unbelievably well most of the time.

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Thanks DotL

I have the aching knees and anxiety & wake up 2-3am EVERY morning (sometimes before this as well). I feel low in my mood that I have never felt before unless I was sick with flu or very very sleep deprived. It's something I just can't shift although some days are ok & others really low. I just don't understand it as I've never been like this before. Did you feel like this pre T3 and did these feelings go away once T3 started?

Thank you.

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Often had very low mood when just on Levothyroxine, unless they increased it to 150mcg. After a few years at that level my T4 levels were well above range, so had to reduce to 125 then 100. Felt life wasn’t worth living on just 100 and body just ground to a halt. So pleased a new GP listened and sent me to Endocrinologist. My mood is really good now I’m taking T3 as well. Hope your Endocrinologist can help you.

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Thank you Dot this is exactly how I feel. Do you remember what your TSH & T4 & T3 were when you got switched over to T3?

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T4 was right at the top of range, T3 was just below the middle of range and TSH was suppressed (0.03 I think).

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That was just before starting T3

Latest results were T4 15.9 (7.5 to 21.1)

T3 is 5.6 (3.8 to 6.8) and TSH is 0.01 (0.34 to 5.6)

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Which T3 did you start with Dot? Thx

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Mercury Pharma when on the NHS trial and for the first 2 months of private prescription. Then I had one month of Morningside. Now on Thybon 20 Henning. All three have been fine.

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Hang in there. You can see from the postings above that you're not alone. I used to be a very positive, confident person with a very calm temperament. Thyroid changed all that, everything too much effort, short tempered etc. But I know it's not 'Me' it's my thyroid so I'm slowly working towards getting my medication optimised and reminding myself of who I really am. You can do it!!

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Thank you! It’s crazy how something so little can cause so many problems, I’ve had people tell me I am blaming too much of my symptoms on the thyroid, nobody really understands

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That shows just how ignorant they are! It is not something so little it is a life threatening condition if left untreated and causes many health complications. How could anyone think that a lack of hormones absolutely key for normal functioning of every cell in your body could not be totally catastrophic to all aspects of ones life. Even Doctors, who have no excuse as supposed trained medical professionals, can be that stupid! It shows just how far people are from comprehending natural balance and how delicate it is. I’m afraid some people lack empathy or compassion for those less fortunate than themselves. You are probably best off avoiding them if at all possible.

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I was fit and active went camping and running with my dogs ran a half marathon and regularly ran 15k a week I worked and was a single parent now all I manage is an hour's walk a day with my dogs and to work part time I'm grumpy and tired most of the time and motivation I've paid for private bloods and NDT but still no where near my old self :-( but I take hope from this site that we can get our health back just have to find the right dose the right drug and the right diet??

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Yes if only it was that easy tho? Sorry to hear you can’t go running no longer 😒 I am also a single parent and work part time, have missed work though due to symptoms, but we will get there 🤞🏼

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Have you checked this out?

tpauk.com/main/article/trea...

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I was taking thyrogold but have just gone back to Levo as felt not better on thyrogold :-(

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I often joke I feel like dr. Jekyl and mr. Hyde 😂

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I’m familiar with that term too haha !! 😂🙈

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My husband used to say, you having a bad day? Now he just says, I can see you’re having a bad day and then he lays low- poor hubby 😍 he’s done his reading and sorta gets it

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Poor guys 🙈 mine is the same but he still has a lot of reading to do yet although he understands to a certain degree.

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After thyroidectomy my entire person became NUTZ from hormonal craziness

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Sorry to hear, it’s bonkers how it causes so much to go wrong in so many bodily functions

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I am absolutely not myself since I had my thyroid out. I have no happiness everything is Flatline. I was doing wonderful acrylic paintings, I was writing short stories. I was taking my Kayak Out. Now I do nothing much but wander around all day trying to distract myself from constant worry and anxiety. Sometimes I also feel selfish because thinking of myself all the time, but when a person is not happy and does not feel whole they don't pass those good things on to their friends. Hopefully somehow we'll all get the right treatments and be ourselves again.

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The anxiety side of things is so frustrating, I also worry over most things! I feel sometimes like everything is way too overbearing and concentration is out the window 😖 yes hopefully we will feel “normal” again one day x

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I have never felt the same since diagnosed, started off with depression and only found out about the thyroid problem when I collapsed one day. Managed to over come the depression but don't feel like me anymore. I dont seem to feel emotions as deeply as I did and I sort of float along on a big blur. My stepdaughter who had her thyroid removed due to cancer feels exactly the same and also has a very short fuse now and I do to.

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Me too, I never used to even lose my temper or even shout now I’m terrible and feel awful after shouting or arguing with anyone! Just want to feel normal one day hopefully we will 🤞🏼

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Sadly I agree Nicola38 , so I spend most of my time talking to my dogs and living in my head , I tell anyone who asks that I’m good , that’s if anyone asks lol x

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I understand that, thank goodness for our pets. They love us no matter how we are.

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I understand totally! I just feel numb inside so much x

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🤗🤗😘

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Numb is a good way to describe it 😕

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My dog is my sanity...….I could not cope without him

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Totally agree. I’ve been going through very similar for a year now. Only in my 40s but feel more mentally and physically worn out than my 70+ yr old parents. Also given up saying anything as my family have the very helpful approach of saying it’s all about mind over matter. Just really want to say you’re not alone and I wish you well.

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Thanks, I understand the parent and family thing as mine are the same !! It’s so hard, some days I just can’t be bothered with the world, I’m 39, have had people telling me it’s just a Simple problem nothing major and believing that taking Levo will sort everything out!! We wish eh? 😳

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Yep-me too- antisocial- low grade depression all the time- no interest/motivation. When I try to raise my meds even a little bit I become very irritable/angry- especially t3. And yes folks I’m on lots of supplants for adrenals/ low cortisol. I feel like I’ve completely lost myself and no one understands unless they have these awful symptoms ok- so appears you are certainly not alone ( nor am I 😀)

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Thank you it’s really nice to know that there are others out there feeling this way and that hopefully it will improve and we won’t be so touchy And down 🙈

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It's just terrible what it does, and no one will ever understand , it turns you into the opposite person, personality interests ,thoughts times I question who I really am , times I feel dead , no interest or feeling jez would do your head in

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I’m with you on that one, sometimes I can’t control what comes out of my mouth when I get aggressive and always feel “on edge” !! I used to be able to talk to anyone but now the anxiety just gets in the way 😳

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Nicola38, thank you so much for voicing the thoughts in my head. So all those strange feelings are from hypothyroidism? All the times I've been so fed up and disgusted with people, is from the disease? Really? Who knew!!

And other members of my family have the same thyroid problem but absolutely no symptoms, so of course I can't discuss how I'm feeling with them. I did mention how tired I am all the time and just overall not feeling well, but let's face it, after a while they're sick of hearing it. I think they feel I should just take a pill like they do and be fine.

So thank you for voicing this aspect of the disease and not making me feel like I'm the only one in the world feeling this. Let's hope we all get back to feeling like ourselves real soon.

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Hi webskeptic, glad to be of assistance, yes I know people who are hypothyroid and don’t have problems like we do and I wish we could be the same as them! Anytime u need to talk to someone who understands, we are here and all in the same boat and it’s nice to know we aren’t the only ones 😊

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Yes this disease completely changed my personality. I became very withdrawn over the last 4 years and have isolated myself so much due to my erratic mood swings and depression that I now only have a handful of friends who really care, the rest don’t understand or don't want to understand.

On a positive note I do feel that my mood is now turning a corner 7 months into treatment. I have recently changed my brand of NDT and i think that has made a huge difference. I think we just have to keep trying different things until we find something that works for us.

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Hiya missimal, I’m glad your finding the ndt is working for you, docs are just prescribing me anxiety and depression meds, I know what u mean about friends not understanding saying it’s all in my head or snap out of it ! Haha if only we could snap out of it eh? Life would be much easier 🙂x

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I am on Levo but it’s been reduced 🙈 the heat intolerance was unbearable 😳

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Hi Nicola

I sympathise with you. I feel exactly the same. I feel like I have lost my personality. I don't know myself anymore. It's such a sad horrible disease. If only the drs would understand how it effects every part of the body and brain. Instead of saying your 'depressed'. I can't understand why they don't look into it more. Why don't they do more research on it?. It's unbelievable that we all have to live a second hand life because basically no body gives a s##.It makes me so angry. Sorry to rant but it really needs to be acknowledged and more research done into it. I guess the pharmaceutical companies wont make enough money on it. It's a disgrace!! Family and friends don't understand either. 😢 your not alone hun. Just keep going and hopefully things will get better for you.

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Feel free to rant lol, i totally understand, thanks, you too 👍🏻

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Totally relate to all, I saw doc about 10 months ago as thought I was going crazy, they agreed and referred me to psych suspecting borderline personality disorder. Decided against psych referral and returned to doc last month with major mood swings and cessation of periods thought madness was menopause turns out severely hypo with TSH of 150+ really hoping some sort of normality returns soon although not sure i remember what normal is now! Hope you feel better soon x

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Wow 😮 150! I hope u are starting to feel better, you must’ve felt so ill, thanks hope everything works out for you too x

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Wow! Looks like your post has struck a chord!

Yes, I’m a shadow of the nice woman I was. I’m a very different, reclusive person.

Being told “everyone gets tired” etc. is such a kick isn’t it? Because actually they have no idea at all.

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Oh yeah, Someone I used to know, used to say the same as her family all had thyroid problems and obviously the Levo worked for them! Told me that thyroid disease was nothing to worry about and to carry on as normal haha if only it was as easy as that 😳

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Yes, if only.

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When we're hypothyroid we don't have sufficident T3 (the only Active thyroid hormone) circulating in our blood if dose is not optimal (slowly increased). T3 receptor cells need T3 in them and we have millions. Our brain and heart have the most, so you can understand why we don't feel so well if hormones are too low.

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i have found i have become short tempered, never violent, but snippy and far less tolerant then i used to be, i have to make an effort to be patient with people and think before i speak ;)

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Yes - I worked it out to be the fillers - I only take. WOCKHARDT known to have the least fillers. If overmedicated there seems to be problems.

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As I understand it the brain is very hungry for T3, if for any reason the supply to the brain is reduced then that will, in turn, affect the emotions. Conversely, as T3 levels increase the brain cells become re-energised and cognitive function improves.

Since changing to T3-only my brain is clearer and more active and my thoughts no longer negative.

It sounds as if you need to change/increased your medication.

Post your latest lab results here and advice will follow.

You can feel better so stick with us... and don't feel apologies are necessary.

Good luck

DD

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I fully understand how you are feeling. All the comments on here help. Just to know you are not alone in this. It helps me understand why I am the way I am. Now having to go speak to a councillor for anxiety and mood swings. After which I will be back in my GP surgery. And explain it is more than likely to do with my hypothyroidism. And see where I go from there.

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I know the feeling hun, I feel like a right hypochondriac I’m back n fore to docs all the time lately x

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I know exactly how you feel. All I do is work and chores now. Can’t manage much else as always feel unwell and even when I do feel ok I don’t really want to do anything. I just want to be at home.

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I got you 😉 I’m the same it’s hard juggling kids, work and this illness at the same time 🙈 when I have the day off work I need a kick up the backside to even get me moving 🙈 but then I feel bad for the kids as I don’t have the energy or motivation to actually go somewhere bad I know 😳

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Yes! I’m feeling exactly like this and have been for a while. Before I was diagnosed (April) I was convinced I was bipolar as I would have these feelings of worthlessness. And occasionally I’d just start crying for no reason, I honestly thought I was going crazy. I still get like that but at least I know the reason for it.

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Yes I’m with u on this although I feel so numb I can’t even cry??

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Ever since I was 13 years old. I remember one day I became extremely reclusive and aggressive, and everything continued going downhill from there. Confusion, slowness, dissociation, panic attacks. Forgot how to read, short-term memory gone and grades straight from As to Fs. Can't cry because of apathy and the only thing I feel is guilt. Just pacing around my room for hours on end for no reason at all. I suppose it was passed off as teenage troubles. Drove myself even madder trying to ignore the itch telling me that something was wrong. Never could truly identify with mental illness. I tried to explain it, all I could come up with is it feels like I have brain damage. Hurts to think that something could have been done sooner. I still feel as if I don't really know myself, still struggle with it every day. B12 injections did help. I wonder if thyroid can do the rest...? I'm starting soon. It's so nice to hear everybody else's experiences as always, it makes me feel less alone.

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You are certainly not along hun we are here for you x chin up x

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Yes not only feel it I’ve been told it, plus can’t be bothered to listen to music and I loved music before i was put on Levo when I got diagnosed with Hypo .hypo or Levo has taken my sole away !

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I feel you although that’s the one thing I can do is listen to music!! TV on the other hand I just got zero concentration!! I don’t even know if it’s hashis or the Levo that’s causing it either 😳 people say ride it out or people also hyper have taken their Levo and been able to crack on with their lives with little or no symptoms, guess we are special eh? 😳

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