Does taking Levothyroxine make you feel ill? - Thyroid UK

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Does taking Levothyroxine make you feel ill?

Debzeewestmids profile image
88 Replies

I was diagnosed last year with underactive thyoid,prior to this,i didn't feel well,but i can honestly say for as long as i've been taking Levothyoxine,i've felt considerably worse,especially when my dosage was upped.I've never felt so crappy in all my life.I have only ever had the basic test because i didn't realise that there were other tests that needed doing to get a clearer picture.I joined a group on FB and learned a lot from the admin on there who encouraged me to get my antibodies done aswell.I've been to see a dr and he has agreed for me to have all the necessary tests,although,after reading posts on here,it seems the Nhs lab will probably refuse to do it.If thats the case,i will go for the private test which i also found out about on here.I will then approach a functional medicine dr once i get results and take it from there.I've had enough with GPs they more or less told me to just get on with it.The dr who agreed to these tests was a locum and was young,which i find,the younger the dr ,the more fresh out of learning they are,and are more clued up on modern day diseases.I feel like i am slowly dying and the only help i'm going to get is,what i pay for.Personally,if that's the case,i'd rather be skint than rely on my own dr.I also feel that my costochondritis has been a lot worse since taking Levo.I asked the dr if there was another thyroid medication i could take and she said no.But there are other ones available on a named patient basis(?) through functional medicine drs.Anyone else on here,feel like Levo makes them feel worse?

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Debzeewestmids
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88 Replies
Nanaedake profile image
Nanaedake

Levothyroxine is not the simple fix most Dr's seem to think it is. But it's the only realistic option in the UK. It does take time to adjust and if you have coexisting vitamin deficiencies you will need to correct them to feel well and for Levothyroxine to work effectively.

You'll also need to ensure you are on the right dose of levo, that you leave 4 hours before taking other medicines or supplements and that you take it on an empty stomach leaving an hour before eating or drinking, except for water. In addition you may need to change your diet to gluten free.

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

Hi,thank you for your reply.I've been on it now for over a year.I do have blood tests scheduled for Friday for Folic,Ferratin,Vit B12 Vit D and full blood count along with the various thyoid tests.I did try gluten free for 3 months at the beginning of this year,but didn't find any difference in the way i felt>I am currently looking into the AIP diet,i did do Paleo which is also GF but gave up on that aswell as no improvement>I've since learned that you need to cut nightshades from your diet aswell which cause imflammation in the body,which i also have.I do see your logic in taking other meds,supplements 4 hours later,it says on meds 30 mins before caffeine,although i am on decaf coffee i realise there is still some caffeine present.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

You might find that if you correct any nutrient deficiencies that gluten free or paleo diet might then help but one step at a time. Many of us have gut problems as Levothyroxine seems to change gut flora and being hypo gives low stomach acid so many people take a tablespoon of apple cider vinegar with a glass of water before main meal. It seems to help. You might find that another type of Levothyroxine suits you better. There are about 4 generics in the UK.

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

my dr said there was only one type of levo.Also,unfortunately i can't take vinegar,i have an imflamed bladder which flares up after taking vinegar.it took me a long time to work out what was irritating it,as the symptoms can take weeks to disappear.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

I'm not sure what your doctor means. If he means there is only LT4 levothyroxine available on prescription in the UK he is nearly right as the NHS is trying to take T3 liothyronine off prescription. But if he means there is only one formulation of generic levothyroxine in the UK then he is wrong. There is Actavis, Mercury Pharma, Wockhardt and TEVA. Many people on this forum have complained of problems with TEVA. All of them have different fillers and are manufactured by slightly different methods. Although technically levothyroxine is not a low index drug, it functions like a low index drug. This means that tiny variations in fillers, production methods and other variables can make a big difference to how the patient absorbs and utilises the hormone. It's a very, very different pharmaceutical to others. I don't think that doctors have a grasp yet on how critical the variations in levothyroxine are for patient health. If you find your nutrient levels are excellent and your levothyroxine dose is perfect and you still feel ill, take your prescription to a pharmacy who will order or have in stock a different formulation of levothyroxine than the one you are taking.

If your doc needs to know more about the intricacies of levothyroxine then point him in the direction of the MHRA report into a review of clinical and quality considerations.

gov.uk/government/uploads/s...

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

Thank you for that,your knowledge is most impressive.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

You're welcome and my knowledge is nothing compared to others on here. There are scientists and researchers and I'm just a fellow sufferer. I've had many years of having to research what was wrong when docs were telling me I was fine, nothing wrong, go home, take anti-d's and get on with it, it's all in your mind. It's not a solution is it? Then it turned out the levothyroxine I was taking had been recalled and patients like me were supposed to be checked for symptoms and people had been reporting problems for about 5 years. So research, read, learn and don't simply take the docs word for it. They know very little about thyroid conditions in the main.

The_will_of_Jill profile image
The_will_of_Jill in reply to Nanaedake

My doctor told me I was wrong when I casually mentioned to her that Nature-Throid and WP Thyroid are made by the same company. She got that authoritative tone that for so many years I chose not to second-guess. And even though I knew from research that they are made by the same company (RLC labs) I lapsed back into my old way of dealing with her and said "oh I see… my mistake" 😔

After our phone conversation I actually checked again on their website because I'm just so used to believing everything that doctors tell me. (And being brainwashed into doubting everything that I know and feel)

They are indeed made by the same company. My point is just that doctors really seem to be completely ignorant (arrogantly so, usually) about what is really going on.

The kind of levo that I took for many years is called Synthroid.

xx

The_will_of_Jill profile image
The_will_of_Jill in reply to Debzeewestmids

You can also make your own Kefir to help with stomach absorption issues. There are also other things you can purchase at health food stores to help with low stomach acid and nutrient absorption issues.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

Yes, take coffee at least an hour after levo. It's not just the caffeine, milk interferes with absorption too.

hellybaybee profile image
hellybaybee in reply to Nanaedake

To be fair, I wouldn't say it's the only "realistic" option. If the option is one thing then there is no choice involved but most of all I think it really depends on your doctor and whether you are willing to pay or not. Realistically, it's most likely to be the only thyroid medication an NHS gp will prescribe (I personally haven't come across one willing to offer T3 or NDT though a couple of people on here have - not many though!)

Nanaedake profile image
Nanaedake in reply to hellybaybee

Yes, if you can afford to pay then there's T3 and NDT but you do run the risk of supply becoming unavailable if ordering from overseas.

mumbleslowly profile image
mumbleslowly in reply to Nanaedake

i have been on levothyroxine for 30 years and seen professors and consultants and said i have never felt any benefit from it,and no-one has ever mentioned anything about diet thank-you ,i think in future i wont bother with the drs

Debzeewestmids profile image
Debzeewestmids

Well maybe thats why i feel sooo crap.I ache all over,no energy,my legs are like lead and can't sleep very goodat night,but feel tired all day.its amazing what you learn off here.It's quite obvious that the medication isn't doing me much good at the moment.However,my dr said that he didnt think it was my thyroid causing this because my last tests (basic) done a few months ago were normal and my symptoms would suggest it was overactive.But unless any of these drs have a thyroid problem,how can they possibly know how we feel?

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

Post your latest blood test results on here and people can make suggestions to help you understand what is happening and why you feel unwell. When you have your vitamin levels post them here. Don't take the docs word that all is ok but get a copy of the results. The combined knowledge and experience of everyone here is more than any one doctor on the topic of thyroid conditions.

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

Yes i will when i get them,that's very good advice .The trouble is how can the dr determine whats normal for me?Intrestingly,i've looked at my medication and my last lot say Mercury pharma group which i have been taking for the last 12 months.I've very recently started to take Teva and it says "new formula" on the box.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

Have you felt more ill recently?

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

Yes i have.I've been taking them for 8 days,but surely,they wouldn't have an effect that quickly?For the last 5 days my legs are like lead and i feel absolutely shyte.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

Well, if you are reacting to one of the fillers it could effect you very quickly. The levothyroxine which is the active ingredient, of course, takes longer to get around your cells but it's not likely to be that which would cause a problem.

Why don't you try going back to Mercury Pharma and see what happens? It's likely you also have some vitamin deficiencies but go back to Mercury Pharma first and then check out vitamin levels.

If you put TEVA into the search on this forum you will see what others are saying about it.

After you've checked out your vitamins you could try Wockhardt or Actavis to see if either suits you better.

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

i'm so glad i found this site,thank you for your time,i still have another unopened box of these damn things but they wont take them back,so any ideas please?

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

Ring your doctor and get a tel consultation. Ask the doc to write a new prescription and leave it at reception for you to collect. Explain what's happened then take it to a new pharmacy. Ring around first and find out which one stocks what you want and check it's in stock before handing in your prescription.

I agree with reallyfedup saying you must still check vitamin levels as it could be the problem and not the levo. You won't know until you have vitamins tested.

Debzeewestmids profile image
Debzeewestmids in reply to Nanaedake

brilliant,thank you.

Nanaedake profile image
Nanaedake in reply to Debzeewestmids

If you find you are better once you've gone back to Mercury Pharma then file a yellow card report. That is the method of reporting poor quality or side effects of medicines. The MHRA are the regulators in the UK for human medicines.

yellowcard.mhra.gov.uk/

Things will only improve if we report problems so it's worth doing not just for yourself but to help others avoid problems too.

bababoo53 profile image
bababoo53 in reply to Debzeewestmids

I had bad effects after just 4 days, my heart was racing, legs hurt and just felt terrible, that's why I stopped taking them .

Catseyes235 profile image
Catseyes235 in reply to Debzeewestmids

Your symptoms to me sound more hypo! Are you cold or hot, any hair loss, weight gain or loss?

bababoo53 profile image
bababoo53 in reply to Catseyes235

Weight gain definitely, and most of the time feel freezing but if I get hot I get very hot ? Thankfully no hair loss fingers crossed, have been okay for ages just on taking vit and herbal supplements like kelp etc , but went through a few months of stress then it all come back . I hate taking any sort of medication because all my life I get every side affect to what ever I have had been tacking. But now keep feeling really down, no energy whatsoever, good old brain fog the works x

Catseyes235 profile image
Catseyes235 in reply to bababoo53

Kelp not advised. Apart from Vit D best deal with thyroid first. Very easy to be sucked in to advice when you're clutching at straws to feel relief. I spent a lot on homeopathy and supplements before diagnosed properly. Years of my life I'll not get back again thanks to delay in receiving treatment. Requires patience and friends on your side to sort fully. Any weight gain now is down to me!

Debzeewestmids profile image
Debzeewestmids in reply to Catseyes235

Yes,i go hot and then i can't get warm.I struggle to lose any weight,but my dr said the symptoms did point to Hypo so it couldn't be that because i was hyper.Those were his words,like no one has ever gone from one to the other.

Debzeewestmids profile image
Debzeewestmids in reply to Debzeewestmids

sorry i thought the question was aimed at me catseyes 235.

Catseyes235 profile image
Catseyes235 in reply to Debzeewestmids

No worries . . It gets confusing replying to replies etc! Just beware of any quick fix suggestions. (Can spend a fortune on supplements/ homeopathy etc) it should be an easy disease to treat but not helped by ill informed doctors, something I find so difficult to comprehend 20 years down the line since I went through this

Pamela0362 profile image
Pamela0362 in reply to Debzeewestmids

I have been on levothyroxine for 5 yrs. I had many symptoms before that I was tested for months. It was only picked up. When I went private for MRI on my head and neck. To my surprise I was informed I have and underactive thyroid, I was asked if wanted to see a specialist but I said it was ok. Now I could kick myself! I have muscle pains in both legs sometimes it is so bad I can't rest my legs because they hurt. I have fatigue symptoms, poor memory, can't remember questions asked, I talk then stop and no recall what I was saying! I forget so much. I have balance problems. Until I joined here, I have had my eyes open, never known so much. I am going to see docs this week and see how much they know about underactive thyroids. X

Skylane2 profile image
Skylane2 in reply to Debzeewestmids

My thyroid levels are all normal now after taking Levoxyl for 15 months but I still feel like crap so the endo prescribed t3 as he said some people are unable to conver their t4. Felling much better now with the combo

hellybaybee profile image
hellybaybee

Sometimes it's simply the case that that specific medication doesn't agree with you and that you need another brand. There are other synthetic forms of T4, I'm not sure how easy these are to obtain on prescription - certainly NDT and T3 NHS prescriptions are like gold dust! If you find you do need these your options are to see a private endocrinologist who knows what they're talking about (list available from thyroid uk) or self medicate which is really a last resort... I would encourage you to put up your results (with ranges) once you get them. Then people can offer you their best advice

RobinAnn profile image
RobinAnn

I was rushed to the hospital fighting for my life from levothyroxine. Rt3 was never done (yes idiots doc are not exclusive to UK... i personally think Germany has you guys beat)🤔

I fled hospital when they tried to put me back on t4. I went to Dr. Hertoghe clinic in Brussels. Know i ONLY take t3. I still fight with docs often because when they see my bizarre blood tests... low t4... they freak. I argue with them-call them incompetent and move on to next doctor. I change docs like most change underwear🤣.

I found a local doc who is too lazy to do blood tests- i just call and get a new rx. I also recently found a t3 doc. He too has issues with my low t4 so it's touch and go but so far i think he's resigned himself to accepting my low t4. This might change any moment though. He doesn't waste time with tsh and he advises all thyroid patients to go gluten free. I suspect my t4 intolerance was from pre existing un diagnosed (at the time) conditions. I was propaply converting mostly to rt3.

I have since learned i have pancreas insufficiency... cause unknown. Will be tested next month for celiac disease, common cause for pancreas insufficiency. Plus now i have stomach issue .. so hope to find out why soon.

My pancreas dx too 11 years and docs insisted it was ulcerative colitis instead. Doesn't get much dumber!😤

I hope you get your answers soon.

Debzeewestmids profile image
Debzeewestmids in reply to RobinAnn

Thank you,good for you for beng so insistent,i was totally oblivious to most of the things i've read on here.best thing i ever did was find this group.

Lisa6950 profile image
Lisa6950

Welcome to the club! I've come to the conclusion you need to weigh up what is most important to you: living your life or taking medication to bring your blood test readings to within 'their' ranges. I was 'diagnosed' 3 1/2 years ago as being 'borderline' hypothyroid, based on one blood test of TSH and T4 results. Not being educated at the time on all things thyroid I went along with it and started taking 50mcg Levothyroxine, which was then increased gradually to 125mcg daily over a period of 1 year. I felt gradually worse as time went by, all of my body hair fell out, followed by the hair on my head which meant I couldn't go out without a wig, my periods stopped completely, I developed crippling pains in my legs that kept me awake at night, I couldn't concentrate on anything, felt like my head was full of fog. I then started reading whatever I could, and discovered that T4 is supposed to be converted to T3 by your body. T4 is an inactive hormone, whereas T3 is the 'active' hormone, what you need to feel better, yet it is not standard practice to check T3 levels. It sounded like madness to me, that I was being filled up with an artificial version of T4 yet no one was questioning whether this was being converted to sufficient levels of T3 to fall within the 'range' that the NHS hold so much faith in. So.....I then demanded that my T3 levels were checked and sure enough, my T3 was right at the bottom of the range despite ever increasing dosages of Levo (T4). I felt like Levo was poisoning me so my endocrinologist suggested I try a couple of months without taking anything. At the end of the 2 months TSH, T4 and T3 were checked again and guess what? My T3 levels were exactly the same as when I was taking Levo, so I was right! Levothyroxine was doing absolutely nothing for me except causing problems that I didn't have before starting on it! It then took another year of fighting to get T3 prescribed as I believed this is what I needed. I had to go through the full range of tests on my heart to satisfy the multi disciplinary meeting that my heart was healthy enough to take T3 before they finally submitted and agreed to prescribe 10mcg daily, but I had to also continue to take Levo as they were insistent I needed it. By then I had also developed plantar fasciitis, and although my hair had started to grow back it was a mess, wispy, dry, so thin you could see my scalp, and so awful I still had to wear my wig. A month ago I saw a new endo as my previous one had moved on, and his first recommendation was to increase my dose of levo again as my blood results were pretty much back to when I was first diagnosed, despite taking 10mcg Liothyronine (T3) and 125mcg Levo daily, and my hair was falling out again. I said I wasn't happy doing this because of all the problems Levothyroxine had caused me. He agreed that as I was 'borderline' in the beginning, rather than starting down the road of Levothyroxine it would have been better to have waited and tested again as there are so many things that can 'throw out' the Thyroid. So now, after 3 years of messing about with my body, it has been agreed that I stop taking everything. I'm a month in now, my hair has stopped falling out in handfuls, my head is clear, not foggy, the pains in my feet and legs have gone. I am still tired, but not nearly as exhausted as I was before and I feel a million times better in myself. It will take a while, I'm sure, for my body to adjust to the lack of artificial T4 and to start making it again itself, but I'm hopeful this will happen. I will be having regular blood test each month to check what is going on, but I think I may have finally met an endocrinologist who is more concerned with how I feel within myself rather than rely on blood test results. I'll keep you updated!

Debzeewestmids profile image
Debzeewestmids in reply to Lisa6950

I think your bang on.Prior to being diagnosed with Underactive thyroid,i didn't feel any where near as ill as i do now.I could just literally crawl up the corner and die.It doesn't help when people tell me i look well!I really feel that they caused my Costo to come back as its been very apparent since starting on Levothyroxine and even more so after upping my dose.I've been to have bloods taken today as advised on here,i've only ever had basic blood test done because i never knew any different.I went to drs on Wednesday because i 've felt so ill for the last week especially .Luckily i saw a locum who agreed to request the tests,if i'd have seen the regular doctor,whose stuck in the bloody dark ages,she would have said no.The same dr told me i wasn't in menopause,even though the blood test results that came back a few weeks before said i was.if you ask for something that she doesn't agree with ie,HRT,you dont get it.

Today i have been tested for TSH T3 T4 both antibodies,PTH,FBC,VIT D VIT B12

FERATTIN & FOLATE.I understand the lab may refuse to do some of these?but whatever they do will be a bonus,if needs be i will pay for the private one and take it from there.Also,do some of the tests take longer to come back?

Today,i didn't take my Levo because it turns out for the last week i've been on the Teva ones after previously being on the Mercury Pharma ones for over 12 months.Once again,i knew nowt bout this,it doesn't bare thinking about what we are putting into our bodies.I have requested another prescription so i can get a different brand as advised by someone on this group, but in the meantime,i will not take any more medication to prove a point that they are making me worse.Once i get my results,i also intend to see a functional medicine practitioner and will make the necessary changes to my diet and lifestyle.Once i get my results i will post them on here,but i'm sure the kind and helpful people on here will give me a few tips which then it may not be necessary to pay a fortune for advice.Good luck honey,i hope you get sorted!

Lisa6950 profile image
Lisa6950 in reply to Debzeewestmids

When I complained to my previous endo about all the 'new' problems I'd been having since starting on Levothyroxine, he said, 'you can't blame everything on that'. Well sorry, but its not rocket science is it? Especially when considering they are all documented side effects of taking it. Maybe I'm paranoid, but I also believe that the reason we are given 'free prescriptions for life' if taking Levothyroxine is because they know we are going to suffer with new conditions we didn't have before taking it, which will require more and more medication as it takes a hold and messes up our bodies. If I were super paranoid, I'd be asking who is benefiting from this (drug companies?), because its definitely not me!

Debzeewestmids profile image
Debzeewestmids in reply to Lisa6950

Its funny because everytime you mention the side effects you are having,it's the same answers."I've not heard that before""it's highly unlikely its your medication"Even though you know yourself it's the medication.Whenever you google the particular medication,voila!Us human beings that are taking them all say the same thing,we can't all be wrong!After all we are speaking from personal experience.!

HLAB35 profile image
HLAB35 in reply to Debzeewestmids

Dr Myhill pretty much sums it up here... why many of us can't do artificial T4 that well.

drmyhill.co.uk/wiki/Thyroid...

A low'ish dose alongside selenium and other co-factors in t4 conversion can help, but you need to avoid raised rt3 as you increase t4, and it'll never be as good as pure t3 or NDT for many people. Due to hair issues I'm thinking that NDT would be better for me, but I'll be out of the loop then as far as my GP is concerned and I need regular blood tests in iron and b12 too, although, I admit going private for these is a definite option, but, yes, it's a bonkers situation .. and weirdly the treatment was actually BETTER in the past as there were no blood tests, just treatment based on symptoms..

RobinAnn profile image
RobinAnn in reply to Lisa6950

Hey Lisa6950- have your periods come back. Levo gave me instant meno at age 39 in 2003, 24 hours after stating levo. Even though i no longer take levo, just t3, I never recovered.

Lisa6950 profile image
Lisa6950 in reply to RobinAnn

Hi

I haven't given them the chance to! I now take the pill with no break, as despite not having periods whilst on Levo the pain was unbearable every month, also something I never experienced in my life before.

I honestly think T3 only is the answer for a lot of people. It makes sense to me, as if T4 does nothing other than convert to T3, why bother taking it and risk all the nasty, well known side effects in the vain hope that our bodies will convert this artificial crap into something we actually need?

RobinAnn profile image
RobinAnn in reply to Lisa6950

I agree. It's amazing the BS stories doctors have handed me when they see my blood values and I explain that I'm extremely t4 intoletant and only take t3. "How bad t3 is and i must take t4". The fact of my intolerance is irrelavant to them...i must take t4 at any cost. Would they insist i take penicillin if i were intolerant to that too... makes me wonder.

My policy... never ever ever take any doctor or any diagnosis at its word. A patient should always educate themselves and be very pro active in their health.

My trust and respect for the medical community was so destroyed. They make my skin craw.

Catseyes235 profile image
Catseyes235

You don't say what dose of Levo you are on? Or how you felt before you took it? From being supremely hypo it took nearly 3 years to settle into normality and could hardly function for nearly a year. Feeling crappy? In what way? You may have to be patient. Now been on Levo nearly 40 years and fine. Take vitamin D as this helps all hormones but there may be no quick fixes. Keep a note of your results and get blood tests more frequently to see if there is any movement?

Debzeewestmids profile image
Debzeewestmids in reply to Catseyes235

I'm on 50mg of levo,felt crap ever since taking them,felt better before.I'm washed out all the time,have insomnia,my costochondritis seemed to return far worse than befor and its never gone away since,especially when my dose was upped from 25mg.I've been on them for over 12mths.After 2 months my bloods were taken again and thats when they upped them to 50mg and after the next blood test it was so called normal.Either way i said to the dr i would rather not take them anymore.I have felt worse after starting different brand as stated in my other reply to someone else on here.

bababoo53 profile image
bababoo53

I feel the same as you, I was on Levo for a short time and had never felt so ill in my life over taking tablets. With my doctors knowledge I stopped taking them for about 10 months but now back to square one, just had a private blood test done ( which I'm waiting for my daughter to print out for me) and that has indicated my thyroid IS under active 🙁 I'm so upset that the Levo seems the only option, I have been taking herbal supplements all this time but now obviously need more then that. The doctor I spoke to a week ago just has the attitude of just take the tablets , everyone else does !!!

Debzeewestmids profile image
Debzeewestmids in reply to bababoo53

it's awful that these drs wont listen to us.My usual dr more or less said get on with it.They aren't experts at everything they are general prctitioners,so unless they have a thyoid problem themselves,how can they possibly understand and advise us.They just dish out drugs willynilly and leave you to get on with it.It's sooo frustrating!I do hope you find an answer,you're in the right place.

robbie0710 profile image
robbie0710

Hi just wanted to share my experience in hopes that you will be encouraged. I started taking levoxyl one of the brand names for levothyroxine about three years ago. It took my doctor about a year to get the dose right for me ( my tsh is almost 0.0). All the while I felt not quite right. He also encouraged me to up my vitamin d and my b12 and eat low carb and sugar free and exercise. Early this year I made a committee to take my supplements as directed and then one morning I woke up feeling absolutely normal! No woozy drunk feeling mind as clear as a bell. This past July I made the decision to eat right and exercise as he suggested and I feel even better! I've eliminated dairy and refined carbs and limit sugar and have finally started to see the almost 80 pounds gained come off. For me it's taken 3 years to feel really well. I got discouraged many times I the past but kept on moving forward. I sight encouragement from this site and that helped me a lot to keep moving gI know it doesn't feel like you will ever feel better but you really will it just takes more time for some of us then others

Debzeewestmids profile image
Debzeewestmids in reply to robbie0710

Good for you honey,i'm really pleased for you!I fully intend to go Gluten free diary free, and follow the Autoimmune protocol diet as from monday when i've done some more research.I did try the paleo diet for 3 months at the beginning of the year,but i will try it again without taking the levothyoxine.i did say on another post i was going to try aanother brand of the medication,but the more i read,i don't think i'll bother.I will see what happens after a few months.Thank you for your encouragement.

Jann57 profile image
Jann57 in reply to robbie0710

Rare doctor! He actually wanted you off meds and healed!!!

CaroR profile image
CaroR in reply to robbie0710

I have just joined this site and found your comments really interesting. Can I ask what amount of vit v12 and vit D you take as I need to get some supplements

robbie0710 profile image
robbie0710 in reply to CaroR

Hi I take 5000 mg of vitamin d and 1000 mg b12 along with a Whole Food complex.

Heloise profile image
Heloise

Hi Deb, I'm sure you are getting good advice and found out there are many types of hormones available and other lies borne from ignorance within conventional medicine.

I'm glad you are listening to your body. I also had those feelings of doom when ill and it's true. Your body is both creating cells and losing cells and when you lose more than you create you ARE actually dying. I often post this video as it is so explanatory and also hints at the ignorance we face as patients.

youtube.com/watch?v=T_Re4ja...

Debzeewestmids profile image
Debzeewestmids in reply to Heloise

hi honey,thank you for that,will defo be watching it in a while.

Hormone-mess profile image
Hormone-mess in reply to Heloise

Fantastic video! Thanks for sharing. I hate how Dr.'s only look at one system or organ at a time.

Heloise profile image
Heloise in reply to Hormone-mess

You will learn so much from all of his videos. Check out brain/neurology, women's health and enzymes. Really important information.

in reply to Heloise

What an awful frightening thing to say on a board full off desperate people

That's really deeply upset me to read

shond2015 profile image
shond2015

Debzeewestmids

Hi there

Just to let you know that I was diagnosed 2 years ago with same condition and was prescribed Levothyroxine on varying doses...was so ill and kept getting iller. GP didn't have a clue and began to treat me as a hypochondriac. Re my weight gain and severe bloating issues that literally had me by the throat, together with the severe lack of energy and weakness etc...was told to try "Buscopan' from Boots the Chemist. In a nutshell (and not quite as flippantly as it might read) I fired him, went privately and am now on NDT through private GP.

My answer to you is simple and straightforward: listen to your own body and if you believe you are doing everything right and your body still feels as if there is something terribly wrong..change GP to 'try' to get the help you need. Also...you should invest in some good reading on the subject. Best of luck. Shon d

Debzeewestmids profile image
Debzeewestmids in reply to shond2015

Thanks for that Shon,there's hope for us all Lovely to read positive posts.

Debzeewestmids profile image
Debzeewestmids in reply to shond2015

Hi there!i wondered how you are now?

7jaie profile image
7jaie

Yes i do i changed from eltroxin a few months ago but i think they changed the formulation levo makes me feel like i have nothing to live for.

Im seeing a doc on tues. To have a heavy metal test done specifically for mercury.

There is natural t3 and t4 combos.

Armour from pigs thryoid.

I wish i never went onto this medication all those years ago.

Have heart tremors gig head thick throat hardly any appetite no libido cant eat anything other then plain foods.i spend my life in health shops and online and get more confused by al this talk about anti bodies t4 t3 reverse t3 ect ect plus i havnt had work for a year and not on medical aid doctors are not helping me except to ask me money which i havnt got .im hanging in sometimes i feel great. Mostly im on a roller coaster Of moods anxiety brain fog anti social.

I feel like im slowly dying

The_will_of_Jill profile image
The_will_of_Jill

Yes, I definitely felt like levothyroxine made me feel worse.

Mountric profile image
Mountric

I felt considerably worse when I started levothyroxine for about 6 weeks, I even called my Dr and inquired about if that was normal but I started to slowly feel better after that and don't have any problems with it anymore

TammyGtr profile image
TammyGtr

Tirosint was much better. Even though it's a form of levothyroxine, the coating is natural. People can be allergic to the coating in Levo

helvella profile image
helvellaAdministratorThyroid UK in reply to TammyGtr

Just to be clear, all UK levothyroxine tablets are uncoated.

sharlottey profile image
sharlottey

I felt terrible on levothyroxine. I was bloated and my neck and shoulders stiffened up that it was painful to move, not to mention the extreme migraines (I had never even had a migraine before taking levo). The side effects made me feel worse than the symptoms of thyroid disease. I went to Armor Thyroid. The levo side effects cleared right up. I feel normal again. I havent noticed any side effects, but have some of my thyroid symptoms have returned, such as tiredness. So life isnt perfect, but much better. I might need a higher dose of the armor. Going to see my doctor again this week. But yes, i felt like i was dying on levothroxine. I will suffer with thyroid symptoms before getting on the levo again.

Eddie83 profile image
Eddie83

If your body can't do the T4->T3 conversion, T4 can make you feel terrible. You may have to detox (from pollutants and bad foods), correct nutritional deficiencies, and support hormones (other than thyroid - e.g. adrenal), before you can feel well.

If your actually suffering from adrenal gland fatigue which Drs refuse to acknowledge and treat the thyroid instead then Levo will give you toxaemia and you will feel like death.. on top of suffering from other debilitating symptons.

My Dr hiked my dose from 50 to 150 over 18 months when I kept complaning of sleep deprivation , exhaustion, black depression, lack of interest in everything, IBS, brain fog, hair falling out and more ..

I eventually sought private health advice and was told that yes I did have a thyroid problem but it was caused by adrenal fatigue.. I came off Levo, gluton , lactose and various other prescribed meds and now take natural hormones for both.. in 8 months I have gone from invalid to full recovery.. " you'll never live without Levo " my Doctor told me in January ... Ha Ha .. well I am !!

Debzeewestmids profile image
Debzeewestmids in reply to

Hi KNRHOVE65,how was it established that you had Adrenal fatigue?

Thanks.

in reply to Debzeewestmids

I researched online and read books because I wasn't prepared to be bedridden for ever like my mother and grandmother.. I then made an appt with Dr.Peatfield who confirmed what I thought - it was one of his books that confirmed everything to me.. and he told me to come off all NHS meds and started me on Metavive for the thyroid and Adrenavive for the Adrenals.. it wasn't easy but now I'm the healthiest I've been in 30 years.. back running my business 7 days a week and expanding it as I'm so so well...

marin5 profile image
marin5

Definitely! My Doc put me on Nature-throid a month ago and for the first time in 35 years, I feel almost normal! It's partof Armor thyroid!

helvella profile image
helvellaAdministratorThyroid UK in reply to marin5

Did something happen in predictive text? This doesn't really make sense:

It's partof Armor thyroid!

Seacape06 profile image
Seacape06

No, I have to admit I feel a lot better on Lev: I recently spent two months in France. My French friend broke her foot so I stayed a month longer than intended.....hence I ran out of 125m of leveroxine. I could not understand why I was getting hot flushes, feeling tired......when it dawned on me that it was because I was not taking my Leveroxine....saw a doctor, got a prescription. Strangely, here I am given two packs....100 m and a 25m . In France it is one tabletop 125m. Must save a lot of money that way. Do hope that you sort out you difficulties soon.

Seacape06 profile image
Seacape06

Interesting. On my last blood test, I was found to be zero folate....was given amonths supply.

The_will_of_Jill profile image
The_will_of_Jill in reply to Seacape06

Folate zero? Wow! How much did they put you on to take per day?

lucylovesgin profile image
lucylovesgin

I think the same. I had very low ferritin, b12 etc levels at the time of being diagnosed and was eventually put on a low dose of Levo. I do feel better than before in some respects but it feels like I've replaced some more normal symptoms that I could live with, with some bizarre symptoms that has everyone looking at you thinking you're just a hypochondriac. Prior to this I'd been really healthy and barely had a cold in over 6 years so I'm finding it difficult to accept this is now me. It's comforting to know others feel the same about their diagnosis / treatment.

Lucy

Machinations profile image
Machinations

Yes levo had me feeling like crap also, then I learnt coffee a definite no no, though can drink gallons of tea, also diary - particularly calcium (any form of) ought be avoid for 3 to 4 hours after taking levo. I simply don't eat for at least two hours after taking levo and my wellbeing has improved considerably.

douganna profile image
douganna

I've been down the same road, only it took me much longer to say enough is enough and it was with the help of this site that I finally got NPT. I haven't looked back since.

Thanks everyone

VLJones profile image
VLJones

Hi debzeewestmids

I feel the same as you i'm only just getting the full blood test that is needed after speaking to a younger doctor at our practise . This site has helped me as i did not know that you can request a copy of your blood test result. I have for sometime not felt good at all.

Debzeewestmids profile image
Debzeewestmids

Hi everyone.i had my bloods taken Friday when i requested for TSH T3 T4 both antibodies,PTH,FBC,VIT D VIT B12

FERATTIN & FOLATE,as advised on here.Well i had a phone call from dr receptionist to say all my results were back and the dr had upped my dose of Levo from 50mg to 75mg.I went to the surgery and asked for a copy of my results.I thought it was mighty quick,low and behold they didn't test my Antibodies just the basics.

This is what it came back with:

!Thyroid function test-(AST) Increase Thyroxine and repeat bloods in 6-8 weeks.

T4 DOSE SELECT FROM

Not stated to be on Thyroxine

!Serum TSH level 6.11 mU/L 0.35-4.94mU/L

Serum free T4 level 13 pmol/l 9.00-19.00pmol/l

THYROID GP COMMENTS

Please indicate whether or not patient on T4

Serum patharoid hormone-(AST) -TELL 4.6 pmol/l 1.60-7.20pmol/l

PATIENT NORMAL

Blood haematanic levels-(AST)-TELL

PATIENT NORMAL

Serum vitamin B12 402 pg/ml 187.00-883.00pg/ml

NOTE

B12 Inderterminate range 187-300 pg/ml

If results fall into the indetermine range suggest use clinical judgement.

and FBC parameters to access if deficient and repeat if necessary.

B12 Deficient< 187 pg/ml.

Serum folate 11.8 ng/ml 3.50-20.50ng/ml

NOTE Folate deficient <3.5 ng/nl Not Deficient >=3.5 ng/ml

Serum ferratin

NOTE reference range

Male and post menopausal females 22 -275ng/ml

premenopausal females 10-204ng/ml

Ferratin <10ng/ml in premenopausal females and

<22ng/ml in males and post-menopausal females indicate iron deficiency.

!Bone profile-(AST)-repeat in 3 months

Serum calcium 2.42 mmol/l 2.20-2.60mmol/l

Serum albumin 39 g/l 30.00-45.00g/L

!Serum alkaline phosphatase 143 IU/I 30.00-130.00IU/I

ADJUSTED CA 2.38 mmol/l 2.20-2.60mmol/l

& FBC which isn't irrelevant on here?

So now my next step is to order a private Thyoid check plus test from Medicheck which someone recommended on here.

What do you think of these results please?

Chowmom49 profile image
Chowmom49

Could you share the name of the FB Group please. I was just diagnosed with Hypothyroidism. I am quite concerned about this and need to get as much info as possible. Thanks

The_will_of_Jill profile image
The_will_of_Jill in reply to Chowmom49

There are at least three or four in there. Type in search at top of your profile and put hypothyroid. A list should appear and you can view them your self and choose which you wish to join, and then put in your ad request.

Honestly though, out of all that I have seen and joined this one is by far the best! No doubt 🦋

The_will_of_Jill profile image
The_will_of_Jill in reply to The_will_of_Jill

Good luck!! xx

Denny59 profile image
Denny59

I have only been taking Levothyroxine for 2 months after being diagnosed and I feel so unwell I am still trying to understand the condition which is all very confusing like what to eat and not eat also the levels T3/T4 all I know is from right now I am not taking this medication anymore until I see my doctor again and demand to see a specialist .I feel like I am dying since I have been taken this medication .I know I haven’t been taken it for long but for the way it’s making me feel I need to know more about

Vasillajay profile image
Vasillajay

I was diagnosed with an underactive thyroid around 2 years ago. I was given Levothyoxine, I never felt ill before apart from the occasional cold. it was found during tests for why I was getting really bad migraines. However, after taking Levothyoxine for about 6 months i have never felt worse. Since then i stopped taking them and I’ve not felt Ill since. I’ve been to 4 separate gps and all of them told me it’s just a side effect of the tablets. I told my consultant my side Effects in detail, in 6 months I had 10 water infections, I was been sick almost every week, I had cramps everyday and my hair came out in clumps she told me it was a coincidence and it wasn’t the tablets. she’d tell me to get used to it. I asked if there was any other options and she said they’re the only tablets for thyroid but we all know she had Lied straight to my face because I know for a fact there is more than one option. So for 18 months I’ve not been ill once. I went back and the doctors then lowered my dose and after being on them for a week I’ve felt worse than I did before.

morcan54 profile image
morcan54

i was informed i have hashimoto my blood presure goes up and i feel as if i am dying vertigo and excausion dr started me on eutrox 25 six days later was confusion forgetable had no appetite crying and feeling really ill had pains all over my tummy couldent sleep so many thinks i felt tongue was full of yellow sore spots dr said is not thyroxin he wanted to raise to 50 i got frighten i felt as i was dying from sight effects i stoped he said i will die in one year if i dont take it i am so depress my bp return high and i dont know what to do i live in cyprus this is the only brand there is my t4 is 13.90 and tsh 8.44 can this kill me i am all worried what other people do in this condition ?

Debzeewestmids profile image
Debzeewestmids in reply to morcan54

please join a facebook support group,they are so helpful,you will get advice from people who are actually living with this illness everyday and not from a dr who knows nothing about the illness whatsoever.Just type in the facebook search bar thyroid support.Poor you,its awful you feel this way,but they will advise yo on what to do next.

Best wishes.

Keep us informed on how you get on.

Statty1992 profile image
Statty1992

Honestly i have started takeing it and my arms and legs feel achy and painful and always geting migranes and dizzy i keep going hot and cold i dont no what to do im on 50mg at mo and they wanting to put me on higher dosage.

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