If you have been diagnosed as having thyroid di... - Thyroid UK
If you have been diagnosed as having thyroid disease and take levothyroxine only for this. What do you feel is your quality of life?
Please select one:
Along with thyroid I also have rheumatoid arthritis and fibromyalgia so permanently feel exhausted
Is there any evidence to prove or disprove a link between fibromyalgia and arthritis. I know of several people, myself included, who have arthritis and then developed fibro.
hi kathgallagher, I also have thyroid, fibromyalgia, arthritis, vitamin D and calcium deficiency. I am cutting down on medication because they contribute to your tiredness. i am starting to feel like i am getting some control back
I have cut out 1 gabapentin bur don't sleep well so am trying a small dose of amytryptylline
I was on 130mg of amitriptyline found it was messing with my head. poor memory,
Amitriptyline is an antidepressant and can make you very sleepy the next day. I was on 200mg for a few years and came off them and got my life back. Now I still take 10mg to help relax my neck muscles. It can be used in a small dose to relax the patient and I saw more recently on embarrassing bodies someone with IBS started taking it and it improved her problem. I think all medicine has it's place it's just the concoctions we have to take which probably lower the potency of each one.
I'm sorry to hear that you suffer with arthritis. Would you like me to send you some links that might help you with your arthritis.
I. Suffer with arthritis .. Mainly in my knee but I've found that eating lots of raw food, juicing, staying away from gluten, diary. Wheat and acidic foods such as white potatoes has really helped me.
I think it's important to point out that RA and osteoarthritis are very different diseases. Many people with RA and other types inflammatory arthritis have Hashimoto's thyroiditis - if you have one autoimmune disease you can get others. Diet and exercise alone will no more prevent RA progressing than they will cure autoimmune thyroid diseases - all require appropriate treatment as well as a good diet and the right kind of exercise.
It looks like more than half the people don't have a good quality of life. It would be interesting to know whether they feel better or worse since taking the thyroxine.
Good question! Didnt feel anything then that concerned me, just had rapid haïr thinning/ loss in 2000 & occasional indigestion at night in bed & they were only symptoms that took me to Dr at local Medical centre. I'd had dépression à year earlier, it was the indigestion, my last comment as i Stood to leave, he said go to Nurse and have blood test. only whe phoning for result was i told i was hypothroid and had to go and get a Dr prescription.
That was all 15 yrs ago, a lot has happened since, one thing i do know is that when we left the UK and I asked for copyof Medical record, it didnt say Hypothyroid, only mentioned my last foot op. its only this last 17 months since moving home, ive felt worse with it, too many neural problems similiar to initial B I symptoms, plus liver problem. il talk to Endo next month.
Hi,
I'm a new member. I've been on Thyroxine for 5 years, low dose but it does nothing for me.
I am desperately tired all the time. It doesn't take much for me to feel exhausted. I used to have an over active- thyroid 26 years ago and had two lots of radio-active iodine within 14 months of each other. I felt reasonably healthy for about 10 years but down hill since. I received no medication in the between years as my GP said my blood test showed normal. My recent blood test levels are OK ??? but I know how dreadful I feel. Unbelievably it's only recent that I am finding out info that I never knew relating to my condition. Thanks to forums like this and my trying to find ways of re-energising myself. I have had enough of being given medication after medication for illnesses that are related to poor thyroid function. Which is why I'm bombarding my new GP at the moment. I read on this forum that it is best not to take thyroxine before the blood test- I did take it and am now wandering if this is why I'm getting back OK results. Next appointment Thursday and I will be asking GP this very question.
I voted 'Other - Please comment' because I have been hypo since the age go 5 and taken Levo since age of 20. Am now 57 so don't know any different.
I had to stop taking Levothyroxine as the side effects were too difficult to cope with,awaiting appointment with doctor to discuss situation.
I wish it wasn't just a one answer poll! I said my quality of life is good, but would like to qualify that by saying if I hadn't found thyroid UK and this site it would be very poor. Also if I only listened to my GP and the local endo it would be very poor as they think that TSH test is all that is needed! Although my GP did run B12, Vit d, ferritin, iron and folate tests once he realised that I knew what I was talking about and he accepts that I need very low TSH result, around .2 to feel good.
It was only by reading on this site I was prompted to ask GP for TPO test. Came back +ve but endo said no treatment needed! Thank heavens for research by reading and help from here.
Keep up the good work on thyroid Uk and this site. Lets hope that eventually cracks appear in the walls of "NHS towers"
This sound horribly familiar...I continually have to fight my corner.. They will keep reducing my meds to try and get my TSH levels in range, then won't accept that i feel awful barely able to function. last time a doctor I,ve trusted in the past said she thought i was just depressed!! I'm not . I am now trying to get the T4 T3 combo treatment... quite a battle!
Have ceased taking it..........am trialling Armour thyroid for 3 months And feeling much,much better.
Me too, was taking eltroxin for 10 years, basically just existing through life!. have started on Armour 6 weeks ago, and already my quality of life is improving Hourly 
long may it last xxxx
Me too was on. Eltroxin 11 years, it was worse than being on nothing. Ndt now. Way better.
Me too on thyroxine. Asked GP about T3 . He said -Don't go down that road !!
My GP said the NHS doesn't prescribe T3, and I would have to go private to get it, at a cost of approx £50 a month??!!!
What were you taking before, brand wise? What is in Armour all 5 hormones?
where did you get your Armour from? I am drawing a blank from my GP and Endo, who both think that as my 'levels' are normal it must be something else that coincidentally happened at the same time as I started on levo.
where are getting your armour from? my GP won't prescribe it
Where do you folks get your Armour thyroid?
Hi Marfit74,
Can I ask where you are getting the Armour from please? I keep reading excellent reports about it? Cheers and I'm so glad you are feeling better that's fantastic.
Response would have been 'excellent' when I was taking T3 as well as T4, but since my prescription has been changed till GPs get special funding from CCG, my qol is 'poor'.
Quote Minister George Freeman MP in a letter to Jason Mcartney MP dated 19 June 2015 : " Healthcare professionals in primary care have a duty of care and decisions should not be made entirely on a basis of cost of the medicine. Patients who are denied access to medicine solely on the basis of cost are advised to raise a complaint through their local complaints procedure....."
You can find out about this procedure on the NHS choices site.
So tell them you will complain if no T.3.
Thank you, this could be very useful ammunition.
Hope so but note the weasel words " should" and " solely".
Levotjyroxine has made me feel ill since I started 5 years ago. It feels like poison for when I stop it feels so much better. I only restart when I see physical signs like dry hair, brittle nails and falling asleep. Then I have another short burst. No way to live a life!
Hope there is a way for GPs to see this poll and hopefully be influenced by it, as clearly Levothyroxine doesn't suit may users. Not sure what is will take for us to be listened to...
PS thanks for setting up this poll 😀
I have rheumatoid arthritis, osteoarthritis & am also going through menopause & on Citalopram for depression, living day by day.
Jamie If you want me to pm you some links about what has helped my arthritis and how I'm trying to hear my body let me know
Kalel
I would appreciate some links to help me.
as I am 56 my doctor has written me off as a middle aged menopausal woman who should expect aches & pains at my age & I know that about 7 years ago I had so much energy & zest for life, now I have zero & even walking to the shops or walking my dog ties me out so much.
Hey I've had a really busy day tidy but will pm you this weekend.
That as been said to me to by the new GP I am 69 and do not want to put up with this why should we have a lot I want to do and see.
Yes please Kalel
Would be very grateful for any info links.
I also forgot to mention that I suffer from Pompholyx especially during the warmer weather & constantly have throat & ear infections & feel run down. I feel like I am about 80, not 56 & feel like life is passing me by.
I have weaned myself off the citalopram gradually as had the most horrendous side effects & would rather try to cope without it if I can.
sometimes good, sometimes crap, my levels have only just settled after the last five years of ups & downs
Forgot to say - thank you to Lizzy1606 for the poll suggestion.
x
Of course there is a bias in that most of those who feel fine are not on this site ,so not a normal distribution of hose on T4 !
I feel between a rock and a hard place.
I need a certain amount of Levo to feel that I have some quality of life (sufficient to feel that life is worth living) but think I actually need T3 (and less T4) to make me feel well and to reduce the risk of overtreatment with T4 only (although this is as yet untested).
Therefore still working on this, but had to answer poor as I already know how I feel with less Levo (tried that) yet Levo at the current dose is not dealing with all my symptoms and may put me at risk of Atrial Fibrillation and/or Osteoporosis.
See reply to Pennystone above
This will never get better, until doctors are held to book over the quality of treatment given to patients. Because I had to take my own treatment into my own hands, I feel like I am treated like a trouble causer by my health centre. But I got the results they seemed unable to get. And now feel I am being blocked from moving my treatment on, by being denied T3.
that is a very very common experience among fellow thyroid suffers sadly :/
One I don't think will last much longer. Sometimes I hate the fact that we are falling into the American way, of suing for everything, but maybe one day this can be used to get doctors to react better to duffers like us.
Shon, it takes a lot to sue a doctor in the States, and an issue of being unable to get a doctor to prescribe you the appropriate meds or the meds you think are appropriate would not be actionable, unless of course you died and then you could prove you died for that reason. Doctors work from what is called "evidence based medicine". Which means that if there was no evidence, too bad, so sad. The medical community rarely thinks outside of the box. It isn't about getting a patient healthy, it is to apply a band-aide and getting lots of bucks for it. More and more Americans are turning to holistic, or regular medical docs with a holistic approach. Meaning they do not solely rely on strict test results. They know there are questions we have not answered. And, being a health care provider myself, I can tell you that the pharmaceutical companies direct a great deal of medical care. Personally, I think the worst thing that has happened to medicine in a long time and ought to be illegal to prescribe, but is given like candy, is a family of medications called "Statins". I'll bet you are familiar with them and I would advise anybody taking them to do some research in chat rooms and discover just how dangerous they are. So if you are as frustrated as you sound, read my original post dated today, or barring that, find a clinic that uses herbs and vitamins, or non-conventional treatments along with conventional! And with the new healthcare our current magic-pen leader has instituted it is only getting worse here in our nation.
Blessings on your journey~*~
I would say that doctors like to think that they "work from what is called "evidence based medicine" but it's NOT what they actually do! Just think about the norms for the TSH levels, which are skewed because they include people with hypothyroidism. It has been estimated that TSH norms based sorely on people with healthy thyroids would be much narrower. This is not a science!!!
Very variable but can't work out what triggers the dips to try and remove them. Has a big effect on mood and this can create a downward spiral.
i put poor.... i cant work, or make a plan, i also take t3, but cant up either to increase my levels, just get migraine type head aches, the same if i have less.... before t3 i was worse. also now short of VitD, B12 Selenium, Magnesium, probably K2 low off the scale lymphocytes. and Showing neurological symptoms similar to that of B12 deficiency, not dementia (had an MRI for other reasons) but no abnormality in the red cells.... had IBS diagnosed for years and years... thyroid un-diagnosed for well years also...and Asthma. funny how i was tired all my childhood lol
Although originally went to GP for TATT, (tired all the time). He tested for Thyroid problems, and I tested positive for antibodies.
Now see that high cholesterol, constipation and anaemia are all part and parcel, which I also had. He was very attentive and interested, unlike some GP's and immediately prescribed Levothyroxine which has greatly improved my condition. Very interested to read everyone's experiences, but personally am feeling fine and dandy. Also tried gluten free diet as suggested, which I feel helped, and am going to see a nutritionist for advice on how to support my body.
Definitely think the more we know, the more we can deal with the condition. So always great to read the forums......
Last summer I attended a routine check up with a private doctor for bio identical HRT and mentioned that I was feeling exhausted, had gained a lot of weight for no apparent reason (which I couldn't lose) and my hair was falling out at an alarming rate. My cholesterol was also high which it had never been before. I had also just undergone a colonoscopy for stomach problems which I now think were all related. The suggestion was I should have a thyroid test and was duly diagnosed with Hashimoto's disease. I was prescribed 25mg of levothyroxine which I have taken for the past twelve months with no change in my symptoms whatsoever. From reading the information on this site I assumed that I was probably under medicated but the doctor refused to increase the dose. A month ago I saw a different doctor who increased the dosage to 50mg. Still no improvement just a breakout of spots, even drier brittle hair and just as exhausted. I know from this forum that there are other issues I have to look out for, which I have discussed with my own NHS GP who has agreed to run blood tests in October. So although life continues I feel I am no longer living the life I had and just feel so awful and tired all the time...so my vote was 'poor'. I take a lot of comfort from reading other peoples stories and how their journey is progressing in the hope I can eventually feel 'back to normal'!
Apart from being very tired
I voted other as I'd like to note that at times my quality of life has been awful but, most of the time it's ok. Not enough to say good. I get by.
I'm sure, in time it will deteriorate further as my weight is becoming more of an issue. I have put on 7 stone since diagnosis 4 years ago and nothing helps.
This is my main concern and my go seems unable/unwilling to acknowledge this is down to my hypothyroid.
I put quite good as I am still walking, talking and getting on with life the best I can. I have got symptoms that are bothering me on a daily basis, but compared to some of the stories I read on here I feel at the moment I am not so bad. I wish I didn't have the symptoms I do but.........
Wishing you all well. N.
What is T3? I only take what is prescribed for me - Levothyroxine 100 mcgs daily and been on it about 25 years. I never feel really great, don't ask GP any questions and never seen an Endo. Am I missing out on something and could my quality of life be improved?
healthunlocked.com/search/t...
The above link will take you to MANY posts where T3 is discussed. You can also go to the main Thyroid UK website which explains so much about the Thyroid
I became tired of fighting with my GP when she tried to reduce my dose after every blood test.
I am now taking Thyroid-S with good results,
Hi Polaris I have been the same for years of having to drop doses after routine tests . please can you tell me how do you cope now if you have to have bloods taken ? do you just self medicate? sorry to bombard you with questions but Im due to have a opp soon and know when I have the pre-opp the problem will arise yet again any tips or info I would really appreciate If you don't mind.
Thanks in advance. Marditart xx
Hi Marditart. I was on 150 mcg Levo and haven't had a blood test for at least two years, although it kept coming up on prescription form. I strongly resisted the GP again trying to reduce the dose after the last blood test and told her that I only felt well when thyroid was suppressed. I don't think she was pleased.
I changed to Thyroid-S three months ago after reading about it on this site - started very gently and now on 2 1/2 tabs. My doctor doesn't know yet and hasn't noticed I haven't collected any more prescriptions 
!
I'm not bothered about bloods as long as I feel well, which I do now.
hi polaris,
never heard of thyroid_s, can you buy it without a prescription ? I,m on levo that I have to buy myself, as doctors say I do,nt need meds, even though I,ve had radio iodine for greaves. I,m not doin well on levo.
thanks.
Shocking that you have to buy your own meds. Lind65!
No prescription required for Thyroid-S. Bought through that well known book site and came from a pharmaceutical co. In Thailand within a fortnight - £40 for 1,000 tabs.
Best to start slowly though and very gradually increase the dose. I was a bit nervous about trying it but the experiences of others on the site gave me confidence to try it,
I hope it works for you if you decide to go this way.
Good luck with your op Marditart - just a thought - many of us with thyroid/Hashi's are also low in B12 and it might be a good idea to take a good supplement (Jarrows) before the op to be on safe side as Nitrous oxide in anaesthetics inactivates B12 if you're already low.
I self-medicate. I've told my doctor I'm doing so. I've also said I don't want to have any thyroid function tests done by the NHS. I was asked why I was doing this and I said that I thought the NHS guidelines for treatment of hypothyroidism were inadequate and sadistic. She was a bit startled I think, but has never mentioned the subject since. It was nearly two years ago that I told her.
I was totally non-functional before going on to Levo and am very grateful to the NHS for providing me with this at least. Most countries in the world don't have any free options at all. However, I'm still a long way from feeling well and have had many, many ups and downs since being diagnosed a year and a half ago. I also am very grateful for this form, your extensive knowledge and all you generosity of time and spirit. onwards and upwards!
Your post could be mine as well as you ive been on 18 month journey of bed ridden to feeling good and bad on various dosages of Levothyroxine. Good to know im not alone with this illness . I've lost my job now but grateful the nhs are treating me. There are worst diseases out there. Hoping I can eventually lose the four stone ive gained as worried that if it keeps going up ill end up with diabetes
Pls I was diagnosed of hypothyroidism last week and was place on 100 mcg levothyroxine per day but I reduced it to 50 per day bcos it's my first time am taking it and need to know it effect on me before increasing d dosage as I also suffer from gastritis. Am I making mistake? Urgent response please. Thanks.
Hi Leah. I was recently diagnose and prescribed 100mcg of Levo. I too was sceptical about the large dosage but someone informed me that that is what docs have been advised to do now instead of dosing people on low and increasing over a longer period of time. I started taking 100 five days ago. Side effects: back ache, extreme tiredness for first half of the day and my period started a week ago. Nothing more so far. Oh and a bit of weight loss
Jen
I was started on 50 but have recently asked to be increased and am now on 75. It does take a while to notice any improvement and in some cases you may feel worse before you feel better as your body adjusts. Not sure why your doc went straight to 100 though. My levels were very high but was still started on lowest dose. After being diagnosed it probably took around 6 weeks to feel significantly better. Tiredness was first thing to improve but aches and pains got worse initially so don't panic and do persist with treatment. I am aware levo doesn't work for everyone but do give it a chance and be aware there is no quick fix but you will feel better eventually xx
its crap, I am constantly tired, I have to kick myself up the bum to do things, I do go out to work, but that is all I can do as I am too tired to do anything else, I miss out on all the parties because I am too tired, all I want to do on my days off are sleep, and I have been like that since I was diagnosed. I feel that I need to see a specialist but with all these cut backs the doctor says I am sorry but you can't blame your thyroid for the way you feel.
I know how you feel. In lived 20+ years like that. Drs always said it was depression, I knew it wasnt, I gave up on Drs. I now self medicate with Natural Dessicated Thyroid, take B12 and Magnesium. I feel so much better, yet angry for wasting too many years on NHS treatment. Do yourself a favour, research NDT.
Exhausted every day never feel well
Had hypothyroidism for 13 yrs also fibromyalgia 8yrs - take levothyroxine -feel rubbish & exhausted most of the time - also suffer from nocturnal seizures over the last 2 yrs - not sure why so am now on medication for this too. Struggle to get through the day sometimes & have had to learn to pace myself if I have things I have to do. I keep asking GP to try some T3 along with T4 but always get told - try this first - am seriously thinking of buying some myself at least to try to get some quality of life!!
I believe its all down to cost !! There are so many people who do not seem to tolerate levothyroxine & I'm convinced it actually makes you feel worse!.
Still walking around with a constant hangover.
I take a very low dose of levo - if I raise the dose slightly [50mcg] makes me feel so ill I cannot function at all.
so after 30 years - I now have fibromyalgia and also many other heath problems. each separate condition is offered medications.... most medications have awful side effects. I have to manage to run my own small business to have enough money to live - so I elect to work and rest and take as few drugs as poss - so I don't have a social life and am regularly too ill do anything. Living alone doesnt help! I have seen a few different endocronoligist over the years [all at my request] including one incrediblely expensive private consultant - none will use anything but levo....I have sheaf of material relating to these experiences. I have got into such a highly strung state before these appointments. I have given up hope for conventional medical help and have been seeing a very good homepath for the last 18 months. I am a little better - no worse - and feel listened to and believed.
bless you trickydog1, I can relate to everything you,ve said.
Me too I can so relate to all of what you said! No wander depression and anxiety engulf us.
I recently quit taking Levo because I could not get Tirosint here in the UK and I have food intolerances to the additives/fillers in the one I was prescribed here. I was surprised to find that within a few days the extreme anxiety I had been experiencing had left me. Then a few weeks later I noticed that my blood pressure was quite a bit lower, so I am now hopeful that I will be able to eliminate my high blood pressure meds soon. If I had known that these were the side effects of the levothyroxine I would have quit a long time ago. I am more tired without it, but am trying out Thyro-Gold and it seems to be helpful without side effects.
I have arthritis in my spine at the base , also other ailments, i try to live a normal a life as possible, but the pain & exhaustion are unreal ! My gp wont send me for another blood test yet & im struggling to get through each day without a sleep. I try not to go back to bed but dont have much choice i get cranky & cant think straight. 😣
I put other.
Although I'm gradually feeling a lot better and my doctor is sympathetic and seems to take a holistic approach I still think that I'm not (or he) is seeing the whole picture. For example he thinks it is unneccesary to test for B12, ferritin, folate etc. so I have started at least to take sublingual B12 and a good quality Vit B-50 complex.
I tested my calcium levels myself to City Assays and that said I was under so I have prescribed myself sun therapy (haha!) and some D3 for the darker months which the doctor agreed with.
He has also not tested me for antibodies but I will press him for this and see what he says, I have no family history so to speak as I'm adopted so i do not know if my primary hypothyroidism is hereditary. All I know is that in the past 6 years or so, every medical condition I have had or have is generally thought of as autoimmune in nature along with typival symptoms. It would be nice to know if I have Hashis or whatever.
I would like to know my other vitamin and mineral levels but cannot quite afford to do this privately at the moment and it is annoying that if they are depleted it might be hindering my wellness. However, if they are optimal I do not want to upset the balance by overreplacing.
There really needs to be a massive symposium for the medical establishment in the UK especially in regards to options for patients. This goes for GP's and Endocrinology consultants some of whom are really not up to speed in matters of the thyroid and I daresay the adrenals too. So much of their time is taken up with matters of the pancreas (ie. diabetes Type 2 and the seeming rise of pancreatitis and pancreatic cancer) that the other glands are left behind so to speak. Looking at the specialities of endos at my large local hospital, out of around 8 consultants only one mentions thyroid...right at the end!
I noted recently that the BTA was going to hold a debate on the subject. Having participated in debates myself it is not necessary to be personally believing in "for" or "against" a subject, just to present the facts. I feel that this group of doctors is severely impeding the approach to treatment options for doctors in this country. If a doctor has done his research and is open with his or her patient and the patient is willing to try without prejudice then why shouldn't they be allowed to prescribe NDT. I'm not buying "well the dosage can be/is innaccurate", this happens in synthetic pharma too. Our bodies are finely tuned but hormonal output is constantly variable naturally anyway.
This is all about Big Pharma profits and the wellbeing of thousands and thousands of humans being held in the palm of a few "eminent" doctors....a medical quango.
Sorry, I'll stop right there, I'm going off on one! I might be pretty OK in the grand scheme of things but it really annoys me for those who are suffering and not being listened to. Thank goodness for this community.
It is about taking exactly the right dose for you as an individual, and my experience is that every 5 or 6 mcg dosage adjustment makes a profound difference to health and quality of life. And the thyroxine needs to be of EXACTLY the same potency every batch, not varying, as much of it does. We need a revolution in the quality and freshness of levothyroxine, and re-education of doctors. I wish this charity would take on the battle to get fit-for-purpose levothyroxine in far more tablet sizes, and stop focusing so heavily on alternative medications.
I feel totally disheartened that none of the thyroid charities are taking on the fight for top quality levothyroxine, nor recognizing the need for individualized dosage. I believe it is likely that most of the people who remain unwell - or downright ill - on levothyroxine, simply need the right dose of stuff that does not vary!!
I felt much better on Goldshield Eltroxin, but now on generic Levothyroxine my quality of life has been badly downgraded, so am now adding T3 (self-funded) and slowly improving, but still not as good as before. What gives CCG's and other NHS bodies the right to take away the quality of other people's lives!
Hi j_bee: The medical culture needs changing so that doctors know that such a change in medication may have the most miserable, damaging, and financially costly consequences for the patient, and that they have no right to inflict such.
Have you protested? Does your doctor know that you are suffering this?
Hi Helenabc, My GP has known for the past 5 years that my special needs son and I have been suffering since we were changed to generic Levothyroxine. I am now pretty sure that we are both suffering from Candidiasis due to the lowering of our TSH, which was reasonable on Goldshield Eltroxin. As this is such an insidious and long-lasting condition I am sure GP's and Endos are reluctant to admit this has happened with the downgrading of Levothyroxine and so are reluctant to treat. Someone posted a few days ago about this happening and now I am sure, although have had my suspicions since the change. Will have to complain again and quote the link to medics.
I have been taking 75mcg of Levothyroxine for 15 years and annual blood tests reveal no change needed in this dosage. As far as I can tell, my health is ok re: thyroid function. However, six years ago, I was told I had osteoporosis and I now take Alendronic acid weekly. This in turn has resulted in my dentist recently refusing to extract a tooth (which is heavily filled, loose and causing regular pain and discomfort) because of the risk of osteonecrosis which apparently applies to anyone on these 'acid' drugs for osteoporosis. There is no known history of osteoporosis in my family and I wonder if the levothyroxine has caused deterioration of my bones.
I also have systemic scleroderma ,fibromyalgia ,osteoarthritis and osteoporosis.I am exhausted most of the time
I was on Levothyroxine only treatment for many years. At the beginning I felt ok. Not perfect but ok. After two or three years however I started feeling pretty unwell and running extremely low in vitamins and minerals. I had to close my business down. I couldn't cope with the business and looking after my children and running my household in such poor health state. I had no idea what was going on and doctors started investigeting other diseases. It was only by accident that I then found out about NDT and my poor state of health is a history now. Thank God. I am on NDT medication only now. It's expensive but allows me to function normally and enjoy my family, my life.
Hi Louise I just voted other but wasn't sure where the comment should go. I feel fine if taking enough Levo but cannot get enough prescribed and therefore take extra as Thyro Gold. I also have B12 jabs which from my notes has been ignored for years although they stick rigidly to T4 results they ignored highlighted B12 deficiency.
I have been hypo for 6 months since having rai for hyper..and I'm feeling worse than I ever did before. I have a heart condition and have had a mechanical valve fitted but still have a leaky mitral..and I was born with a bone deformity which I doubt anyone on here has ever heard of because I'm yet to find a doctor who has seen it before..It does have a name..here we go...congenital bilateral proximal radioulnar synostosis..what a mouthful..but it means I am unable to rotate my arms below the elbow which has led to arthritis in my elbows and also shoulders from a lifetime of trying to hold or pick up things in the "normal" way..It also affects the right ankle. Sorry to ramble on but..yes since starting levo it has just added to my woes. I'm constantly tired.brain fog.headaches and worse join pain than before. The only thing that's keeping me sane is reading all the posts on here and realising I am not alone. ..so thankyou all
I voted no quality of life . I am soon starting on NDT because I am having bad feelings that I didn't get before levo also weight around middle. There are also reports that levo is unstable and therefore unsafe from batch to batch.
Has anyone heard of how if you are on HRT or have been on the birth pill for sometime that you will be oestrogen dominance and progesterone deficient and will give PMS and getting pregnant difficult also that's why you get morning sickness in pregnancy?
What a lot of mountains to climb so yes thank God for UK thyroid and this site.
i need to add that I have been lucky to find a doctor who tested me for everything only to find my reverse T3 was 3 times normal and so I am now on bio identical T3 and feeling so much better. Aches gone, loosing weight, sleeping, not sweating etc. remarkable change.
after feeling awful for 3 years on Levo it is such as change. i am getting back to the old me.
I was diagnosed as hypothyroid about 8/9 years ago. Apart from a couple of months when I was juggling to find the correct dose, it has been virtually a non-event and I carried on working and life as normal. However, four years ago I was diagnosed with Vasculitis and that has turned my life completely upside down. Strong immunosuppressant drugs and constant fatigue mean that I've given up work, and have to plan my time carefully to get the rest that I always need. But through it all, my levothyroxine dose, and my TSH values have remained steady.
I voted no quality of life at all. I feel constantly exhausted and some days can hardly be bothered to even potter around home.
Have been taking Levothyroxine for approx 9 years now and every day is a struggle, just existing through life. Plus holidays have to be u.k only and even those leave me exhausted for weeks afterwards. I am about to start Armour soon, so I'm hoping and praying that I'll get my life back again. I'm sure the levothyroxine is not good for my system !!!!!!
Been taking Levo for approx 15 years after RAI, no problems and doing well
Sister on it for 30+ years after TT and no problems, doing well
I am taking 100mg levothyroxine tablets. I know I have to work harder to achieve the quality of life that I want. losing weight is a real battle for me right now, apparently it's one of the probs of thyroid.
chin up your not alone!!
My quality of life is fine again now my GP has agreed to put me back on a dose of 150mcg daily. Two years ago I was reduced to 100mcg and looking back now, I went through Hell! I even went to my GP in tears telling him how bad I felt but he just prescribed anti-depressants! I never took them though, thank god! My energy levels are slowly starting to increase after 2 months back on the higher dose, ( I asked to see the senior GP at the Practice and explained everything to him and about all I had read on the Internet and it was he who agreed I should go back to 150mcg) and my low moods have virtually disappeared! I can't believe how much my body was affected just by the lack of 50mcg a day of thyroxine!
I ticked "other" as I was taking 100mcg of Levothyroxine and I felt awful. (Doctors and Endo wouldn't increase my dose.) My free T4 and free T3 levels were falling instead of rising. So I thought I'd try adding T3. It's a steep learning curve, but I am feeling better than I have felt in years. Thank you.
I had 1/2 of my thyroid removed over 2 years ago. I was on levothyroxine and have had serious reactions to it. I stopped taking it over a year ago but my 1/2 thyroid isn't active enough on its own. I tried taking the levothyroxine again this past month but had reactions the second day I took it. Have to go back in to see my doctor and ask to see someone else! I took armour in the States and it helped tremendously but I really don't want to self medicate here.
Great Poll - Only 3% feel great.. can we do the same thing with NDT now?
Lots of comments seem to say that people feel better on it
While on T4-only, could not get my TSH below 4.1. I did not feel well in this state. If I would attempt to raise my dose of T4, I would feel tremendous, life-disruptive anxiety. Once I added in T3, things were good. I have to maintain my FT4 at the range bottom, or slightly below range, in order to avoid anxiety and feeling jittery.
if correct and décent blood tests had been done years ago, I might not now have Hashimotos, vitiligo, neural problems (that Iv e put all down to B I but find could also be Hashimotos,s) or had 2 bone marrow biopsies, might have been able to give me a décent reason for cirrhosis and some other stuff going on. I just dont know, my research progresses but too slowly.
I put good as over the last year I have managed to get an increase of Levo from 100mcg to 150mcg and this has helped my brain work better. I am still better at forcasting the weather than the weather man though and although I am eating less calories than my body requires daily along with a walk I am actually putting weight on so am now about 5 stone over my natural adult body weight. i am working with my GP to sort this out as I pointed out that it was cheaper for them than having to pay for my knee replacements to be repeated too soon or worse.
Not poor -- thus far I've managed to continue working, for example.
Not "quite good" -- i haven't the energy to do anything but work and basic household duties. No life otherwise.
Hi, Decca4Ever, Thank you for your reply and sound advice. When I see my GP on Tuesday I will ask her to speed things up if she can. I can't seem to get through to the consultant's secretary. I always get the answering machine....with no answers !! Once again, thanks for the advice.
Somewhere between poor and quite good, still working and keeping the house clean but not quite with it and struggling to lift my eyelids. Only diagnosed 4 months so reading everything on here to help get me back.
Agree will probably depend on the GP or if in a partnership their rules.
Yes mum and dad had visits .
I just wish I didn't feel so tired all the time....my ability to get a good nights' sleep seems to have completely deserted me!
As well as UUT I also have arthritis in my neck & shoulders and Osteopenia in my spine. I'm tired most of the time but also don't feel I'm getting the right level of treatment from my GP's and Endo's. My Endo lowered my Levothyroxine from 175mg to 150mg about 5 years ago, saying in his opinion "nobody should be on any higher dose than 150mg" Until my recent bloods were taken and it was raised back to 175mg I have been exhausted most of the time, had brain fog, palpitations, muscle and joint pa, plus many more ailments. So thanks to him the last 5 years have been awful! Since my medication was raised a month ago I'm feeling so much better but still felt it could be raised further to 200mg. This is something I will tackle with my GP in the near future.
As well as UUT I also have arthritis in my neck & shoulders and Osteopenia in my spine. I'm tired most of the time but also don't feel I'm getting the right level of treatment from my GP's and Endo's. My Endo lowered my Levothyroxine from 175mg to 150mg about 5 years ago, saying in his opinion "nobody should be on any higher dose than 150mg" Until my recent bloods were taken and it was raised back to 175mg I have been exhausted most of the time, had brain fog, palpitations, muscle and joint pa, plus many more ailments. So thanks to him the last 5 years have been awful! Since my medication was raised a month ago I'm feeling so much better but still felt it could be raised further to 200mg. This is something I will tackle with my GP in the near future.
Thanks for doing my poll.And thanks to everybody who as taken part. Alot of interesting replies.
it was ok in the beginning, felt normal for a few months, then all my symptoms returned with revenge, thats why i started researching thyroid, it took a while to pluck up the courage, but im now on t3 only and feeling better, not always perfect but certainly better quality of life now
Trouble with Polls sometimes the exact answer is not applicable, I would say my life is reasonably poor but not totally poor, it could be better, it could be worse.
Feel like absolute crap on thyroxine so purchased NDT from the states 16 years of feeling like I'm practically dying- enough is enough this country and its thyroid " specialists " need to get a grip and stop thinking about the pharmaceutical companies and treat us sufferers like human beings and not idiots
Since my tt an on this drug l have become more ill , l have reported levothyroxine on the yellow card scheme as l now have chest pains severe headaches excessive sweating heat intolerance and foot pain 😞
12 months since diagnosis and Levo dose has been increased every couple of months. Feeling a little better each time and hope this continues for a while to come
I have taken Levothyroxine for twenty years. I worked nights for twenty five years, now i am retired. I look after my two grandsons three days a week plus overnight stays once a week. I have had stiff joints, painful bones and muscles for years. I see a chiropractor every eight to twelve weeks which keeps me mobile. I have had times where I been unable to move due to stiffness in the morning. I never realised that this was part of my hypothyroidism. When I have explained my symptoms to my doctor on visits, he has never said that was the cause. I have been sent for xrays and seen a Rhumatologist but had no explanation or answers. It is only since reading the comments here that I have realised all is not well. I do get very tired, do not sleep well despite being tired. I suffer with restless legs which is often the reason I cannot get to sleep, then in the morning I have trouble waking. I do push myself as I hate being in pain and like to be busy and not give in. I take a cocktail of vitamins and minerals, eat lots of fruit, vegetables and fish, and avoid bread. I did go through a period of hair loss last year. I did say my life was okay, it would be great if I was pain free.
Hi
I have been on lev for 4 yrs now and just trying to change the way I eat to see if it will help as my joints ache and seem to feel a bit low. I recently had my dosage changed from 75 to 100, I expected to feel a lot better but not by much. I was told to try kelp and other vitamins to see if this helps, I have started to look for a weekly plan to follow to try and make it easier and to see if my general well being and overall moods change. I'm 52 this year and really struggling with what to eat for the best. Thanks. Hayley
Fatigued, brain fog, poor memory, joint pain the list goes on
Firstly, my doctor has told me that it is NOT a disease. Secondly, I have annual blood tests and depending on their results my Levothyroxine is adjusted accordingly. Maybe I am fortunate but I am not aware of any difference to my general health.
So many, symtoms. Never anything done!
I also have osteo arthritus, long term bi-polar disorder which has become permanent depression, since my thyroid problems. I also have copd/ asthma all of which are ascerbated by the weight gain and lack of energy caused by my thyroid problems. I have felt no improvement in my physical symptoms since being on levothyroxine, although apparently on 125mg per day my dr says my level is OK at the moment!
I feel desperate to get dome decent quality of life, I am 56 and feel 20 years older!
I gain about 4lb a week , I'm on levothyroxine 100 mg. I'm anxious, foggy head, tearful, my hands and feet burn and tingle, palpitations, dizzy, omg I feel dreadful.
I lack energy on a daily basis, often feel cold, even in the summer, suffer with depression and ibs. I get angry for no real reason. I don't know if all of this is related, my doctor doesn't see a link, but I suspect otherwise and often wonder if I'm just losing the plot. Some days are a complete struggle and I hide away. Can my thyroid be responsible for all of these symptoms?
I seemed to feel better for a while, coasted and have recently bombed! have had Levo increased and after a while felt back to my old self again and had the clearest mind for ages. This has only lasted a very short while and I'm back to feeling tired and unwell again.
I also have several other complex conditions which could affect my quality of life. However, I feel the lack of choice in thyroid medications is TOTALLY unfair and feel I, personally, may benefit from taking Thyroid S as well as LDN.
I JUST WANT TO FEEL BETTER THAN I DO NOW. I AM JUST 60yrs OLD GOING ON 90yrs!!
My life has turned around since being on T3 as well as T4 for a year now. My life was sinking into a black hole before this. Thank God my Dr finally listened to me and sent me to an understanding Endocrinologist. I can now work full time. I obviously don't convert T4 to T3 well. I get tired days but I feel 100% better. Thanks
I have many diagnosis, which include hypothyroidism. I used to be on Armour brand thyroid and did very well ( over 25 years) But for some reason the medical community no longer believes that there is a medical basis for this product, and if they bothered to prescribe it, one had to find a compounding pharmacy to make it. I was then switched to Levothyroxine and although my levels are what is called within normal limits, I have no quality of life, no hair, brittle spoon shaped peeling fingernails, experience poor restless sleep, inflammation of the musculature, weight gain. Actually the list is endless and continues to get worse which is why I am here in this community. I believe I have recently discovered a huge piece of the problem and wanted to share insights with others. I believe that in spite of everything, I would feel better on Armour brand thyroid, but now I have other problems caused by insufficient treatment of my thyroid symptoms and I am relegated primarily to my recliner~
HI everyone, thank goodness, I now self medicate with T3, after 12 years of hell, and nuts to the docs, they have seen that my conversion rate from T4 to T3 is very low, the answer was, from a renowned Endo in Newcastle, I never prescribe T3!!!
Lol and double lolz matey, you sharp would if you had it!!! Have never felt so good, now have gone back to Salsa 3-4 times weekly, with enthousiasm, whereas before, I just couldn't drag myself anywhere after work. Proof of the pudding is in the eating, never mind the blood results, it's what we feel, coz we're not blinkin robots!!!
This data flies in the face of the Thyroid/Endo establishment who, through incompetence, tyranny and censorship insist that T4 only treatment the the gold standard for UAT.
Ok
Levo helped me a little but I just had to live with some of the symptoms. I remember asking my doc what the point of taking it was if it didn't sort out the problem. I was referred to an endo who basically just told me to lose weight...totally ignoring the fact I knew my 20lb weight gain over the previous couple of years had been down to levo. As soon as I changed meds, that weight (and only that weight...none of the excess I was already carrying, unfortunately) dropped off.
I am on natural thyroid meds now (a brand similar to Armour) and feel totally normal 99% of the time. I only have problems if I eat a lot of something that doesn't agree with my thyroid. My sister is on Levo and her doc supplements it with T3. That works for her but didn't work for me.
I see lots of people asking about where to get meds. I can't advise on that but I would suggest finding a site called 'Stop The Thyroid Madness' and googling to find support groups on Yahoo.
I have severe joint pain, gain weight very easily and am increasingly tired. My GP treats the blood results and not the patient which I think is wrong. I feel we should be able to try a higher dose if we want to, even to the point of signing a disclaimer.
I had to fight for years to get onto Thyroxin because I new I had an underactive thyroid but the blood tests were saying I was OK. Eventually I got so bad the tests finally said I had an underactive thyroid. I've recently had my thyroxin dose raised twice and I feel no different and my bloods haven't changed so is the Thyroxin doing anything for me? My GP says more thyroxin may give me palpitations and a heart attack. Is this true?
I have osteoarthritis, plantar fasciitis, a bursar on my hip, tendons torn in my shoulder, I get cortisone injections in several joints and am overweight. I can fall asleep in the day for hours and still sleep through all night, if I have no knee/leg pain that is. I would just love to be out of pain so I could exercise more and get out of this vicious circle.
Come on medical people get us sufferers sorted its a horrible existence being like this.
Kind regards. x
Oh and I have fibromyalgia too. Some days my pain is so bad I feel something is seriously wring and someone is missing something.
I used to have awful water retention badly swollen feet and ankles this has gone since I have been on Levothyroxine
Ballooning weight, constant fatigue, low mood, lack of motivation to do anything physical. It's pretty bad atm 
I have hypothyroidism and fibromyalgia. How many are both and levothyroxine doesn't work? The endocrinologist Mr Paul Underwood was a condescending pig with nothing to offer except disappointment and lack of faith in so called specialists. He should have his licence taken away. Unless you have fibro/hypo, you shouldn't be able to call yourself a specialist in this illness. Just blood tests don't tell the whole story. All doctors/consultants should have updated lessons on 'bedside manner' as well as medical knowledge, in order to keep working. T his man has none and there are many who have unfortunately witnessed this. I dragged myself out of bed for nothing. If it wasnt for my children, I would have killed m myself years ago thanks to men like him and no quality of life.
Excellent
Good grief, am I alone? I haven't read all the replies but have not seen a positive one.
I live in California and did horribly on synthetic Thyroid medications. Have tried them all, including t3/Cytomel. I was finally able to wean myself off of them and have tried multiple natural dedicated thyroid medications..Armour (apparently havin issues again), Canada's Efra, Naturthroid but did not feel well on these. Most likely the fillers and inability to take them sublingually. I just found WP Thyroid by RLC who also makes Naturthroid. Westhroid Pure Thyroid only has two fillers and they are naturally derived. This pill can be taken easily throughout the day sublingually to spread out the t3. I am hopeful that I have found the best option out there at this point in time and that my health improves.
Also tested for food allergies. No eggs, gluten, dairy (whey or caesin), etc....
Using some adrenal glandulars too to support my lie adrenal function.
Hope this information helps somebody. I too had a life of practically no quality being on these synthetic thyroid medication. I tried to go onto anti depressants to get a feeling of health, however, that just made me suicidal. By the grace of God, I had the determination to commit to trying to have the best life that I could in raising my two young daughters. I am working my way out of this hole, and their U.S. hope for others in this state.
I always thought Levothyroxine made no difference to me whatsoever over the 12 years I've been taking it. Then T3 was added thanks to the input of a private endo who thought I might have conversion issues. This seemed to help for a few months but then GPs didn't like prescribing it so found my TSH low and have now referred me to ab nhs endo. Meanwhile my dose of Levo was dropped by 25 mcg every other day. I've felt less well with worsening constipation and fatigue since dropping the dose. This is reflected in my thyroid bloods because my FT3 and FT4 are both very low in ranges now. But private endo won't sanction any raise in dose of either because of suppressed TSH. Soon I suspect my T3 will come off the menu when NHS endo sees me. It's all a bit grim but I have other autoimmune conditions so maybe these are the problem. Hard to know.
just dont have the energy i used to have and could sleep on a washing line
I'm always tired, and I always hurt. Still unable to work full-time, and still fighting with doctor's.
