If you are on thyroxine only, which of these ap... - Thyroid UK
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Unwell on 50mg been on it 13 years and still doctors won't help
I am unwell on 50mg and GP just keeps saying that my blood tests are ok. They don't really seem to want to listen.
God thats awful happened to me too. Now I am trying to be my own doctor plus looking for a new one from talking to people on here. Good luck to all - my doctor left me in tears saying that its a ruck sack full of bricks (my thyroid problem) that he could do nothing about because nothing can be done to help. Whether he is wrong or right it was not the most helpful thing to say and made me feel like shit! Good luck all
hi, ive been on 150mg for 8 years also, i walked around with hypothyroidism for 5 years before being diagnosed.so in total ive been ill for 13 years like you. my doc keeps telling me my levels are normal and its all in my head. ive been to an endo and he said the same. i have nearly all the symptons i started off with, infact they are getting worse. ive cried begged and pleaded with him for help and he just called in the receptionist and told her i was depressed to take me out of his room. i want to change to armour but dont know if he will let me.
My understanding is you will need a private prescription for this. There is doctor Gordon Skinner in BHam who could advise or Dr Vinod Patel (NHS) if u were to consider a combination of t3 and T4. I can highly recommend Dr Skinner because I have seem him myself and he prescribed Armour. It's too early for me to comment on the outcome yet. Good luck it's a nightmare and disgrace how we are treated.
I agree with you it is a disgrace how we are all treated by the NHS .. thank you for this info you shared ...
I have already phoned Dr Skinners office 
I will also enquire about Dr Patel now as well as it is going to take me an awful long time to save up to see Dr Skinner and have the follow up consultations + tests not to mention getting there and an overnight stay which would be needed.
I wish you well in your recovery to optimum health.
Hi all, please please persist in your search for good drs. I've been hypo for 15 yrs, much longer tho than I was diagnosed. I just never felt right after my last child was born, 21 yrs ago. I had to see 5 drs before I got a proper diagnosis. Only to be put on 150 of T4. Still felt crap for at least 8/9 yrs. was fobbed off constantly. Until one day I said to my Dr " would you be happy walking around feeling like I do"? If you don't do something for me I'm going to lose my house, at the time I was a single mum working my guts out just to keep a roof over our heads. I had no support from anyone was an ablosute nightmare time in my life. I demanded to see an Endo who then tested my T3 sure enough I needed that. But the synthetic T3/4 didn't agree with me. So many many trips later I finally got a prescription for Armour Thyroid. So all I can say guys is be persistent, it's frustrating and dreadful the shit they put you thru but I'm an example of some one who was not going to settle for half a life.... Good luck to you all much love mel. Xxxx
i have the same problem Doctor said the NHS doesn't provide T3 or Amour. The Endocrinologist said my levels were normal and that I was depressed. I was diagnosed in 1999 but although better than I was (falling asleep all the time) I still experience extreme tiredness, lethargy brain fog, thinning hair, brittle flaking nails excessive plaque. So can you get T3 privately? Birmingham is not that far from me , maybe I'll try Dr Skinner. It feels like a conspiracy to keep us unwell (getting paraniod)
Sounds like I wrote this post!!
There is hope for some - combined therapy, if you can bully it out of the medics. The average GP does not have/find time to read what U & I can find in 2 min with google.
My experience, even when I had some natural production; needed enough T4 to drive TSH below 'normal' range. Among those I know; 75mcg upper-range, average mass female; 125mcg T4 for av. size male.
I was very 'alert', responsive person - was eventually on 175mcg and having acute, fast-onset fatigue during almost every day.
My employer, boss + occupational health GP gave me the ammunition to pressure consultant referral.
100mcg + 10mcg T3(Liothyronine) twice-daily.
Not perfect, some risks, some insomnia not uncommon and timing of and when/what to eat re second dose a juggle; but am able to work effectively 5 days a week now, because my head is no longer likely to be full of fog some days.
Are you in the UK? I have had Hashimoto's for about 11 years. I'm on 200 mcg of levothyroxine. Before I take it, and for about 2 hours afterwards, I feel like I'm in a total brain fog. I can't think of words, I am forgetful, and I'm really clumsy - like I can't feel my fingers properly. Sounds like nonsense, so I'm not sure how to tell the GP that I am tired/brain fog/forgetful/clumsy and then ask for help, i.e. T3.
Did you go to an endocrinologist for T3? Is it even available in the UK?
Thanks.
Yes, I am in England. Yes it is the brain fog which I have just about 'removed' from my life. Yes, T3 (Liothyronine Sodium) in UK. And my 'stupid' immune system has destroyed my glands - the decline took 3 years.
Brain fog, stumbling particularly in the morning, all used to be there even with TSH below 'normal' range. I take meds ~ 6am + water, no food until 6.50 - am; still can take body 2 hours+ to get going, but I don't need checklist to get my kids ready for school anymore. I'm reliably alert enough to drive every work day.
The difficult bit was getting the GP referral to Endo. consultant, who is attached to my local main hospital and does private as well. My GP changed his tune after mild threats and me saying I'd get out my chequebook.
Endo. (she) assessed me as suitable candidate for what I believe may not be N.I.C.E. recommended therapy. BUT, T4 + T3 therapy is available for free on NHS repeat prescriptions with NHS Medical Exception Card, which anyone on Thyroid replacement is entitled to, if your GP remembers to tell you - mine didn't.
My 3 visits to the consultant have cost ~GBP350. Also N.B. to everyone re Free T3 test - it is readily available from NHS, your GP just has to write it into 'Other' box on the form. My GP lied initially and said I'd have to get tests done privately (~GBP 125).
It took several 6-week try/test cycles to get the pattern of dosage and T4 vs T3 balance. Overall, I'd say use Google to find consultant in area, who show evidence of research interests. Also the combination of NHS Occupational Health advisors and my consultant have rescued my life and allowed me to keep my job.
Good Luck and maybe? even as a late GP's son I'd say find a woman GP - I couldn't get to our, one overloaded local.
Sounds like you went through a lot to get your treatment sorted out. I'll look around my area for a specialist. It's heartening to see that the majority of thyroxine dependent people are unwell on thyroxine alone, because I've been putting up with this for years. I don't understand why T3 is like this secret treatment that you have to investigate alone when clearly T4 isn't sufficient.
Thanks for your help.
This is very interesting. As a child, I was given liothryonine, but today the GP told me it was impossible to prescribe here.
Hello there. I know this is an old message, but I'm compelled to reply to you being a late GP's daughter myself! My Dad was an "old school" dr with excellent observation skills and ability to think laterally in his diagnoses, but I've not met a GP who's interested in delving to find a solution for me.
Have been hypo for 16 years since my late 20's and never felt well again. I used to be reasonably clever, with degree from Durham and Pgrad quals but am completely "knocked off" now intellectually, physically and mentally! I've lost faith in conventional approach, but just don't know what to do next! could see Dad's soon-to-retire colleague with contacts in Oxford, or try alternative route. Really bad symptoms at the moment. If you are still there, would you have any advice?
Thank you and apologies for this rant!
thyroidblob1
Hi Thyroidblob1
A few years ago I was on the point of giving up work. My blood tests were "normal", but I was exhausted the whole time and my brain was fogged. The best my GP could offer was an ME support group. I found Dr Gordon Skinner through an internet search and went to see him at his private clinic in Birmingham. I am now on a combination of T3 and T4, which I get through my GP on the NHS.
Forgot to say I feel good and work full time.
It sounds like your getting somewhere which is really brilliant news its frustrating knowing you don't feel well and there isnt much you can do about it .... my GP writes on the lab form free T3 & 4 and TSH but he never gets the T3 & 4 tests results just the TSH as the hospital says the tests are too expensive to do ?
I have gradually felt worse over a period of time especially the last couple of years after being on between 100 and 150 mcg ( depending on the lab results ) of eltroxin for 33yrs.
It started with my memory I can't remember short term or words then pains in the muscles and bones in my legs and ankles, the constant fog which gives me panic attacks because I seem constantly mixed up, dizziness and spinning on waking where sometimes I fall sideways when I get out of bed and at this moment in time I am loosing so much hair everyday soon I wont have any left, my skin is so itchy I could scrape it off.
Just had my TSH reading back today and my GP is now going to reduce my 100mcg of eltroxin down to 75mcg , in his words lets see ?
I am very upset and concerned as my body was used to levels and dosages based on reading of the ranges 0.3 to 3 in S Africa which seems to be the norm for the rest of the world ... but not here in the UK which has a range of 0.5 to 5.
With my past ranges being based on 0.3 to 3 and medicated accordingly ... today my TSH is very slightly raised according to UK levels ?? and has been previously for the past 2 years ( just changed GP but not much difference ) that means I am already now way below the medication needed and range levels for what my body has been used to and its going to get even less medication.
I think I better look at wheel chairs and wigs 
My female Dr nice as she is was not able to help and told me that T3 Amour was not available in Uk, I insisted that I had a referral and paid to go private as I was feeling so unwell. What a waste of time and GBP500. Told the same old story my levels were normal and I was depressed. Apart from feeling like s**t I'm the happiest I've been in years and that was the end of that. I'm so fed up of dragging my body around with so much effort and being told by healthy people "just use yourself more ". Rightly or wrongly I have now ordered T3 from the Internet because I have to do something, can't go on like this
Forgot to say I'm on 125mcg
Take 50 one day and 75 the next and my TSH is now at 0.86. Have regular bloods done, great GP and no need to see an endo even though it has been offered. Take vitamin B and evening primrose daily. Take my pills first thing in the morning and wait at least 30 mins before food or drink. Took a year to get to this stage. My appetite and sleep pattern are almost back to normal
I too vary between 50 & 75, too long on 50 I feel sluggish and unwell, too long on 75 and my head is all over the place and I feel unwell. I will try alternating them like you because at my surgery none of the doctors' seem to know anything about thyroid problems (other than if you are over or under from a blood test reading). If the thyroid levels come back as they say normal, then thats it! I take a liquid vitamin & mineral supplement which helps a lot, I buy this from the US. I notice this is dated last year are you still feeling well?
I am on 175 per day and still struggling with excess weight and food intolerances. My bloods show it is "within range" and am still trying to talk my GP into taking further action.
Very unwell and getting worse,on 25mcg of thyroxine a day for 10 years.I'm now housebound and bedbound most of the time, and still doctors will not help me.
hi, 25mcg seems really low hardly worth taking ,some people need to be on a higher level even if the bloods say its ok, if your unwell still and for 10 years i would get a second opinion or change your doctor,im on 125mcg a day any less and i have symptoms, good luck .
I agree with sandrajune - 25mcg is very very low. I am on 125mcg a day and nearly right (but not quite)! A second opinion sounds a really good idea and perhaps take someone along with you for support. Good luck and I hope you feel better soon. Take care x
Been on 25mg since Jan this year and now been told have cfs, thyroid levels are 'back to normal'.
I doubt 25mcg is doing much. tsh result are pretty worthless, make sure they test free t3 and free t4. check out the site - stop the thyroid madness. it is about thyroxine only meds not really working for people and getting back to natural thyroid that replaces all thyroid hormones.def worth a look! I was told i had cfs, but since i've been taking t3 as well i am much better - not 100% yet but def better! good luck!
25 seems very low. Beware! I have problems with 50mcg and GP won't budge. Ongoing drama.... They TRIED to diagnose Depression, CFS, Fybromyalgia and now the Change... and yes my levels are.... 'normal'.
what is it with these Drs that they'll diagnose anything other than the need for T3 or higher dose of T4. I just don't get it. A simple hormone could sort it but they would rather have you diagnosed with Depression etc., and prescribe more expensive drugs.
Vit b and evening primrose, not been told these help???????????
Evening Primrose is supposed to reduce hair loss from Hypothyroidism (see Mary Shomon's book for more on EPO) and I think Vit B is supposed to boost energy levels
Mary Shomon's book? Can u give me the name of it please?
Many thanks'
Had my thyriod removed in Feb 2011 I am on 175mg was on 100mg then 150mg then 200mg all since op...I am still under the consultant but I did go to my GP last week as I feel tired do not sleep (wake 1/2 hourly or hourly) my hands/feet get cold and I ache..He said he couldn't alter anything as had not been discharged so have to wait to 5 th July and I have a very huskey voice which consultant does not think will improve...I just want to be normal again..Gill
Is he a thyroid consultant? He's not very good is he....
Have you got graves disease? if so, you'll need extra T3 as you get resistant to it with Graves and the body can't make all the T3 it needs from conversion of T4 alone....
Are they messing around with the dose due to the TSH? Fools!!!
Nel
He is a ENT consultant .. no I haven't got graves I had a grothe which was bleeding and growing quickly thankfully it wasn't sinister..as I do not understand it I do not know if there is anything I can do to help myself..I work full time and when I get home I have to go to bed to rest I don't seem to have a social life now...gill
If it's all beyond you, why don't you read dr Peatfields book... your thyroid and how to keep it healthy.... it's on amazon at about £8 at the moment and it explains everything in nice easy language.
Thankyou will this book advise me even tho i haven't got a thyriod ...gill
better still go and see him, he holds clinics around the country, there will be one near you. Look on his webpage for details and make an appointment
my gp says my blood results are ok so I must be the symptoms in my headat least your still under the consultant he want refer me back to the consultant that operated on me or even write to him shel
Get a copy of your results - check them yourself. If I'd have done that 10 years ago I'd have realised my 'borderline' result was actually underactive. Each person's optimum thyroxine level is different. Some people need high doses to feel normal. I'm on 150 now after starting on 50mcg with TSH of 40+. GPs tell you all kinds of crap, from 'it's just how it goes' to 'you're fine now' without understanding or wanting to understand it's often a symptom led treatment that is effective. PS: you can request a copy of your medical notes under the Freedom of Information Act. Find out what Doc has been saying!
WOW!! only 20% of people are actually feeling well...... the rate for treating with thyroxine only is something like 85% of people feel well, and the rest of us are liars and deluded (or maybe we need different meds )
Mind, the 85% of people who do well with T4 are unlikely to find themselves a forum, why would they?
Nel
I think thats right Nel, I am one of the 20/85% whichever figure you believe, I have been diagnosed for 4 years and this is the first time ive been on a forum. I do think you have to play about a bit to get it right, I hit lucky quite quickly
I googled the side affects of levothyroxene & was amazed at the findings, so much so, I came off it for a few weeks to prove a point & I had never felt so well in years!! My muscles were stronger, my joints were less painful & could walk so much further than normal (I have arthritis) my head was so much clearer I could have a decent conversation with anyone & my bladder & bowels worked so much better!! The list goes on but I had blood tests for a pre op & my TSH levels went up to 24!! Now they won't operate on me until the levels are normal. After 6 weeks of being off levothyroxine my hair started to fall out & my nails & skin were very dry so I had to go back on them & lo & behold all the problems have come back BUT, after seeing my doctor (who was not happy with me!!) I am now waiting to see an Endo & hopefully go onto natural thyroid replacement, fingers crossed!! We know our own bodies don't we?!
Sorry I can't answer the question about the various doses of Thyroxine because I no longer use it.If it can be of any help when I was on 150mgs. I was ill...sleeping all over the place...very cold...pains in my joints ect..Now only use Armour 75 mgs.
Have Graves Thyroid treated with Rai almost a year ago.. feel ill everyday aches pains stomoch hurts headaches and worse of all servere depression panic attacks and exaustion. Great isnt it. and like most all my results come back withen normal range.
Have been UNwell on 250mcg, still hypo symptoms. Am just starting T3.Fingers crossed!
Only diagnosed in April, my TSH was 26. GP put me on 50mcg thyroxine, ok for a few weeks, but then all the symptoms came back, so i increased my dose to 75, (advised gp by phone). My subsequent blood test was 1.1, so ok, but symptoms came back two weeks ago, so have increased thyroxine to 100mcg, without advising GP! Symptoms once again cleared up, however don't feel well again today. Have to go for another blood test end of June, and have to see GP in July.
this is what keeps happening to me. the doc said my levels were too high on 150mg and wants me to go back on 125mg. but my symptons are still very bad on 150mg so i carried on taking them. he will know by next week as i due the yearly blood test. but i cant go on like this being constantly ill. been 5 years undianosed (tsh was 50)and 8 years on levothyroxine, along time when u dont feel good. ive asked to see another doc for the blood test results,what i want is to try armour but dont know if i can yet. they did say they had an alternative to thyroxine. if not im gonna look around for an doc again.
I deliberately miss my morning meds before a blood test to give a more accurate idea of what my body is able to do on it's own.
I have only recently gone on to (a fortnight ago) 125mcg so not terribly sure how things are working yet. I am feeling better than when I was on 100mcg but too early to say for sure at this stage.
I'm on 175mcg of Thyroxine, still loads of symptoms, the one which annoys me the most is my inability to lose weight despite dieting and exercise, I have asked for specific further tests to be done only to be told my thyroid problem isnt connected to my weight problem!!! well it sure as hell isn't helping!
i had this also, i stopped smoking and didnt know why i felt so ill, my thyroid had also packed up, i put on 4 1/2 stone at a rate of 2-3lb aweek. i spent the next 2 years crying constantly as ive never been this big, even when i was 9 months pregnant. i managed to lose 1st 8lb then it went back on again. its took me 8 years now to shift some. i recently joined slimming world and lost 9lb in 3 weeks before joining as i was too ashamed to walk in this size. i have since lost another 8 1/2lb in 3 weeks. totalling 17lb in 6 weeks. it can be done. i still have alot of symptons as well but generally i feel quite good at the moment due to shifting a bit of weight.
I'm on 175mg of Thyroxine, after total tyroidectomy, 3 years ago, initially gained a lot of weight and felt slow and low.
Now with sensible diet and exercise at least 3 days a week in gym, have lost 3.5 stone and back doing sports I haven't taken part in for years.
Feel better than I have been for 10 years and plenty of energy to do things
On thyroxine for 10 years + still have problems and in it has affected all aspects of my life
I was on 75mcg but still having lots of hypo symptoms TSH 1.6. GP let me go to 100mcg blood tests all in range but I am having palpitations. It seems I have a choice of palpitations or muscle cramps/severe tiredness/bad tinnitus etc the list goes on as you know. I am going to GP to ask for dose reduction, much to my disappointment
Why not try alternating the doses... 75mcg one day and 100mcg the next day, to give a daily average of 88mcg? It's not uncommon for people to find that 25mcg is too big a jump. Fine-tuning to an in-between dose works for some.
Thanks RedApple, that's what I will ask for, I would hate to go back to the 75mcg. I have been trying to reduce my dose a little by missing a tablet every fifth day. I thought this would work but it doesn't seem to be.
Thanks for your help
Rachel x
Hi -
Remember that it takes 4-6 weeks for the body to react and find new stable state after a dosage change. Often nothing happens for 10-14 days, then a better period. As you will see above I've been through all sorts of dosage routines.
You'll need a prescription change to 50mcg and 25mcg T4 tabs, then try dropping one 25 tab every other day or Mondays, Wed. & Fri. for example.
Because the T4 remains in the blood for a number of days, effectively there is no change in your blood for approx 5 days.
When you are taking a low dose, it is particularly important to ensure the tablets are not 'lost' / smothered, exitting into your gut on their own. My female relative on my mother's side, managed to reduce dosage by 25mcg accompanied with not eating unrefined cerials for breakfast and not drinking even a milky drink until 30-40 min after taking pills.
Good Luck.
Thanks for your comment AlasdairM, Doctor prescribed me some 100mcg and 25mcg tablets as I get Eltroxin (I don't think they do 50mcg). I now take 100mcg every day except Mondays and Fridays when I take 75mcg. My symptoms have improved. I started taking tablets at night which have helped and I am careful to have them on an empty stomach
You would try one day 75 the next 100 to see if in the middle levels you out..?? Just a though rather thank you go back to the dreadful symptoms.. Perks
Expected better, on 125 - have now started taking t3 to top up low t4 and high tsh results.
To me I would have preferred monitoring for maximum health improvement and then adjustment lower if necessary. I think the slow process has just knackered all my hormones and thyroid. Every time I have to wait until oedema has got out of control. Dont get me started on weight gain - 14lbs in 5 months!
Interviewed at least 4 gps and they know very little. So my advice is dont waste your time with them - you have to be the expert and tell them what you want to happen. They dont want to see a snivelling problem in front of them that they have no idea how to fix now do they. Oh yes I have been offered the 'Depression' solution. LOL
Best wishes to all you sick people on this site
take 100mg levo, have been unwell since taking it 10 years ago, constant palps, anxiety lightheadedness plus loads of other symptoms just exisiting really.
Have you checked your adrenals?
I take 100mcg and normally dont feel too bad but last 3 weeks have been a nightmare. Heavy foggy head, dizzy spells, pain in the back of my neck and dont get me started on the weight gain and the leg cramps....
Have just made appointment for more blood tests as i am with a new doctor here in Tenerife. Lets see what the Spanish medical service come up with.
Here's hoping....
Up to 200mcg now, it's taken 2 years of Sllllooooow trials by the GP.. Ifeel better thank I did on 100 or 150 but still have the ache's the tiredness and the weight.. The good day's are getting more frequent but there are still many bad ones when I have to go to bed afterafternoon just to be able to stand up and cook dinner.
Well on 150 a day for 18 years. Have some days when I feel really rough and everything gets too much (i think thats life isn't it) but mostly in good health (touch wood) Could do with losing a few stone but have nooooo will power.
On a 100mg of levo for almost a year now, still feel like utter shite (sorry lol) 4 out of 7 days, but found exercise and listening to my body improved things a bit. Now awaiting new bloods as I have a sneeky suspicion my tsh has gone up again. Watch this space peeps! And I am 'borderline subclinical' AKA utter bollocks, apparently I should show no or little symptoms. With a tsh of 5.6 when diagnosed I was at the point of checking myself in to the loony bin!!! Fatigue, dry itchy skin, a cold that would not shift, no 3rd section of eye brows etc.... Still, I wake up everyday and try face what this disease throws at me. Defeated is not a word I want to use when talking about my thyroid.
This forum is a lifeline for people like myself and others
Only on 75mg of levothyroxine, at the Dr's Tues to try to get an increase, wish me luck
I am well on 125-150 on alternative days and as long as I dont take one particular brand I am marvellous.
I'am on the same dose but it doesnt seem to be working for me. My GP's refuse to alter my dose as the blood tests show up as normal. I cant find any GP who is willing to help me with my symptoms. Its me against my body. Lately i've developed pain at the back of my thighs muscle and calves as well as hair loss. Gp has requested for another blood test ... wait see what they say after that
I cannot answer this because I take naturethroid in addition to purified levothyroxine. I thought I would just look to see how it was going. I just feel soooooooo sad after reading your responses. So many of you are suffering. I don't know how I did it because believe me I was so ill but I have managed my own illness and eventually got myself well.
Please do not accept being diagnosed with cfs/fibromyalgia - your docs do not want to get to the bottom of why you have symptoms.
YOU HAVE SYMPTOMS BECAUSE YOU ARE NOT FULLY MEDICATED!
sorry to shout, you have symptoms because you are not on the correct medication that suits you or not taking enough.
For those of you still sufferenting, make it your aim in life to fight this! you deserve a better life than this, so do your families. Let us help you to get better!
N O W!!!!
Do you get naturethroid by your own means, or is it available on preseciption?
Interesting as I was diagnosed with fibromyalgia, which then shifted to Vit D deficiency and eventually to hypothyroidism! What is purified levothyroxine and how did you find out you were allergic to gluten? Thanks
Could you tell me what purified Levothyroxine is please.
I started out a couple of years ago on levothyroxine, but it didn't agree with me so I requested to be prescribed a natural thyroid replacement and have felt much better on that. However, I think what is almost as important as the amount of thyroid replacement you take, is what has caused your thyroid to malfunction. In my case, I discovered that I had undiagnosed gluten intolerance and am now on a gluten free diet. There are other food intolerances that can affect the thyroid also, salicylate sensitivity being one of them. Unfortunately I also have that. The problem with many GPs is that they consider your levels to be normal based on a blood test when in the 'old day's before tests were ever invented symptoms were what counted. Also some doctors and laboratories are still using old charts for TSH measurements, saying that anything up to 5 is normal. In America, the society of endrinologists have said that 3 should be top of the range and that very soon 2.5 will be considered top of the normal level. My doctor said that my levels at 2.8 are normal, but I still have flaking, brittle fingernails and am currently on a higher dose, the equivalent of 100mcg of levothyroxine. It is suggested by the laboratory that makes the natural thyroid supplement, that patients be medicated to the middle of the range i.e. your TSH levels should be somewhere around 1.5 to 2.
felling not just right - on 100mg levothyroxine for 12yrs now and just been with doctor last week, blod results came back and all 'ok' - but i no that i am not, tired, aches and pains, hot and sore feet, and weight that i cannot shift no matter what i try - really low
sorry for my spelling - brain fog -= i did mean blood results and I know that i am not feeling well
ali.................I felt terrible before I removed gluten from my diet. It was causing awful chronic fatigue which went away as soon as I went gluten free. If you don't know you are gluten intolerant, it can cause a whole range of health problems, hypothyroidism being one of them.
Reply to this
Hi PeggySue, I am hypothyroid, and at the minute i really am very low, very anxious, i have been with my doctor but as i said my results are 'ok', i didn't ask what the range was as i don't know if the receptionist would have given it out to me...really stuck at the minute ...thanks for your reply
I wonder if anyone truly feels well with thyroid disorder? I am beginning to feel as though I simply have to accept that my life with autoimmune hypothyroid disease will never be the same as it was before. I have increased my dose recently by 12.5mcg every other day (I don't want to do anything too radical without my doc's consent!), and just having a shaving of an increase always seems to address my feeling chronically run-down and depleted for a few months, at least to some degree.
I think many people feel well with a thyroid disorder. Well, actually I don't have one at all. Its true there are ups and downs and various side effects which I am only learning about on this forum, but in the past I have side effect and nobody (including me) knew what was happening. I only take Levothyroxine 100 and 125's but apart from odd symptoms from time to time, possibly because I have never known to stick to one brand, I am well with lots of energy. So if you can get it spot on - you can be well and with the help of this forum, if things do arise, you can find out what to do about it.
On 100mcg Levothyroxine/day, have been for the last 5 years and had felt no better since I was first diagnosed... But I am happy to report that I have felt a marked improvement since I started taking it last thing at night rather than in the morning and am now progressively trying out Multivits & Mins to adjust the balance in accordance with DR Peatfield's book, which appear to be working. Now all I have to do is shift the ton of blubber that's accumulated around my middle so I can move about freely again and life will be sweet! And, of course, convince an sympathetic endo to take my request to try out a combined T4/T3 regime seriously...
Hi, can you tell me more about the multivits and mins regime? Is it recommended to take levothyroxine last thing at night?
I have found that alternating days with just a basic multivit&mins from Sainsbury's own brand with a multivit&mins for post menopausal women from Tesco's own brand works for me... It was Helvella who first recommended taking it at night. I'm sure if you look up past questions regarding night-time dosing, you'll find the answer there, which is where I did.
I am certainly eager to try anything that makes me feel better than I do now! Thanks for your ideas.
Research to back up that taking l-thyroxine in the evening may indeed be beneficial:
I had 7/8 thyroidectomy 23yr ago, I weighed 7st.9lb then & within a year my weight doubled. At that time I was diagnosed with Hypothroidism & still am. I've been on Levothyroxine ever since, my weight has crept up to 15st, I've got osteo& rhumatoid arthritis & cannot have knee replacements until I lose weight, I also have galstones, hiatus hernia,kidney cyst, diverticulitis & duodenal ulcer. My hair's thinning and nails like paper & wont grow. Im always tired and irritable, cannot sleep at night as my legs are so restless and painful. My Dr prescribed Amytripteline for sleeplessness & Xenical for weight loss (my daughter who is a nurse has strongly advised against me taking either medication).
It is poss to lose weight without a thyroid. I swim twice and week and take a yoga class twice but I found that if I can stick to 5/2 the weight does come off. Problem is I have just made a banana and almond cake and its hard to resist a small piece!!! I don't think sitting in front of the computer helps either!
i was on 250 and felt no benefit - when i was asleep i used to dream of going to sleep! constant headache........
started on t3 up to 60 and felt 60% better then changed the levo for armour and now mostly feel 95% even lost some of the 5stn i gained!
no aches and pains awake all day, tendonitis almost gone, not so cold and i feel like doing things again.
so a definite no to levo
unfortunately no improvement in the spelling!
i am on 300mg of levothyroxine, take at night. Also have to take 10mg cetirizine min (40mg max) for an undiagnoised allergy.
I still have to rest during the day and can happily sleep for 14 hours straight when allowed (have a teenager in the house who sleeps less than me!!!!
constapation is still a close friend although not as bad.
After sending my blood results into Thyroid UK, I was informed that I have Hashimoto's disease, a name never mentioned by my Dr and Thyroid Uk have suggested T3.
Anyway back to the Dr armed with more info.. I have found that it's best to go with each day and enjoy the ones when you wake up refreashed.
People, please look up the side effects of levothyroxene & there, most probably, will lie the answer to your many problems
Diagnosed with a tsh of 68 in November now on 0,200 mg of levothyroxine. The hell disappeared. Still loads of sideeffects though!
Not voted just nosey - 73% still unwell.
I have been on Thyroxine for 13 years after birth of my second child, I was on 150 mcg and finally started feelling well after wrongly being told I had Post Natal Depression...I recently (3 years ago) had another child and prior to pregancy was on 150 mcg, no weight problems and felt fine, during pregnancy was monitored and after birth of my child was put down to 50mcg..a huge drop.I am now still on same dose 3 years on and feel terrible most days.I am tired, irratable, snappy, no patience what so ever, achey limbs, cold, eyebrows thinning,pins and needles, loss of libido,and have put on a huge amount of weight which I cannot lose...My recent TSH levels were 4.4 and Im told by doctor is borderline...just been back to dr today as things very bad and just fed up feeling so ill all time and she has sent me for more blood tests...I also asked for my cortisol levels to be checked...does anyone else have the same problems as me...my tests always seem to come back 'normal' yet I feel awful and know in myself that 50mcg is too low .....any suggestions would be welcome.Also any suggestions on the cortisol thing would be appreciated...thankyou for reading this.
Hi, I think most of us have the problem of having those " normal " results yet still feel unwell, and an NHS that doesn't want to listen.
I know it's hard because we don't have the energy to fight on, but somehow we must keep trying.
My thoughts are with you especially as you have little ones, that on it's own is pretty tiring, you don't need the fight.
God Bless.
I have had an under-active thyroid for over 25 years and am getting progressively worse symptoms. My GP ( who I have no faith in) keeps telling me "It cant be my thyroid because I am on thyroxine" " It is all to do with my weight" How fed up am I with this reaction every time I go to see him.
I am relieved to have found Thyroid UK, it has made me realise I don't just have to put up and shut up. I am back in the fight!!!1 Thank you!
I hope every one on here gets some relief from their symptoms and begins to feel better soon.
As we all know that the goverment is trying to sort out the nhs it does not seem to be making a good job of it.
becaause there are still too many managers involved and not enough medical staff ( ie specialised doctors and nurses.) I think we need to lobby the government in to pushing for the treatment we need and deserveindstead of passing the buck.
After having a complete Thyroidectomy last July (Papillary Carconoma) I started off on 200mg and have spent the last year going up and down. It looks like I'll end up on something around 125mg but for the past 2 months I've had to remain on 150mg to bring my TSH levels down being as if they're too high I run the risk of the Cancer returning. Being on 150mg has been awful, the constant heart palpitations, the bad moods, anxiety, swinging energy levels, at one point I thought I was going mad! I have been told I can move down to 125mg now which is more bearable (TSH now 0.4 but have been told to expect it to rise again being as my Thyroxine dose has gone down).
been on 100mg for 20 yrs still feel tired an ill an struggle with weight an energy when first told i was 32 an doctor said it was an old lady`s disease cheer`s for that still young at heart
Only 27% on T4 feel well!
Can you send this poll result to NICE. Clearly the poll suggests current treatment for hypo-t is failing and cannot be cost effect for the NHS and worst of all leaves many people in misery and stress.
Les
Hi Everyone
I have had my underactive thyroid diagnosed when I was 6 weeks old so when mine was diagnosed it was rare at so a young age in this country, however the name given to people like myself was cretins ( yes Stupid ) my was told she would have to push me to do things ( and thankfully she did) as I would not have achieved my way of life today, I feel that I am very lucky to have what I have but still feel that doctors treat you as if you are stupid.
I am in my early 50's and have been married to a wonderful man for 31 years we have 3 grown children and 4 beautful grandchildren with another due in October, I work fulltime as a Data Input Clerk within the NHS, I would not have achieved any of this had it not been for my mother pushing me.
My Thyroid has never worked but the doctors will never admit that there are side effects with Levothyroxene and it makes me so cross when you are treated like this, I have also been diagnosed with Bleptharitis and I put this down to my thyroid treatment. Please keep pushing GP's for the treatment you deserve after all you are payng for this service throug Tax and NI contributions
I was diagnosed with an underactive thyroid which was growing and had nodules on it a week before my 21st birthday. The doctors moved so quickly that I was operated on to remove it on Valentines day and released from hospital on my 21st birthday 3 days later. I was started on 25mg Eltroxin and tested every two months. I didn't improve so I was given Ditroxin in combination. This went on for a few eyars and eventually I started to lose weight again and started to get some of my energy back and the migraines eased to only 5 a month. I was then asked if I would like to try Natural Desiccated Thyroid as my doctor had seen good results in other patients. I was willing to try anything so was put on Armour (NDT) for 4 years before coming to the UK, and I lost weight and was full of energy and felt "normal". My migraines virtually disappeared and only recurred if I was under stress.
I was shocked to learn on registering with the NHS that I was to be taken off it and put solely on levothyroxine, as I was told that it was illegal in the UK to prescribe NDTs as it had been used as a "diet" pill. Since this happened I have put on an enormous amount of weight, I am tired, feel ill and feel as if I am losing my mind, my memory is appaling and my mood swings horrific. My levo dosage has steadily increased from 50mg in 2002 to 225mg today. This is ludicrous and I have requested going back onto NDT for so long I have now given up trying to persuade my NHS doctor to help me. I am either told my symptoms are due to my weight, me going into early menopause or I am not taking my medication as I should. I am so sick of these excuses when all that needs to be done is give me the medication I flourished on.
I sincerely hope there is someone out there who will heed our cries for help.
The specialist at my hospital told me he prescribes Armour for some patients who cannot get on with levothyroxine - so it is not illegal to prescribe. Dr's hide behind anything that costs more out of their budget. I am just about to go on Armour as I feel so bad on levothyroxine.
Ask you Dr to send you to a specialist and say NHS does prescribe via consultants.
I'm very lucky to have eventually found a helpful GP who is guided by ME! it's only taken 17 years! I now take 125, 125 then 100 mg which has had me happy for over a year, after ups and downs etc for years. It did have to get really very bad before I was taken seriously but now I have full support form my GP - hurrah for her! Keep persisting, ask them why they won't let you guide your own medication.
I was diagnosed in March 2010 with hypothyroidism and was started on 25 mcg, 50 mcg then in April 2010 I was put on 75 mcg. My old GP surgery was a bus ride away and then I discovered there was one just around the corner from me! so I moved to that surgery. The first doctor I saw was ok but she didn't really listen to me so I went to the senior doctor of the practice. He is good to me but from April through to June of this year I was on 75 mcg and felt at the time I was not on enough but left it at that.
Last October my TSH was 2.67 so I was left on 75 mcg. In May this year my blood test revealed that my TSH was 9.98! so he increased my dosage to 100 mcg, I took this dosage for 6 weeks and another blood test was TSH 9.53 so he has now upped me to 125 mcg. I have only been taking this dose a week and I am already feeling improvements. I am not as hot, I have more energy and my family have noted me looking a lot better.
I just wished my GP would have listened to me last October as my TSH would not have been as high in May of this year.
GP's should be listening to their patients. I know there are people a lot worse off than me, e.g. still waiting to be diagnosed. My GP didn't refuse me the blood test like some do.
Alison
Looks like the struggle will continue, groannnnnnnn. I was diagnosed 8 months ago, still feeling c**p (all usual suspects) on levothyroxene starting at 50 then 100 and now 150 and not much changed!
I have autoimmune hypothyroidism and I believe I have had it for absolute years as a lot of the symptons of this I can date back to following the birth of my son and daughter (especially as I retained the placenta and my son was a 'blue' baby) that was years ago as I will be 60 later this year. Groannnnn again. I hate the thought of having always been fat and now obese, what a way to go through life. Yeah doc says lose weight and pains in feet, ankles knees, shoul;ders and neck will disappear. Depression will go, and will be able to gert out and excercise etc etc ad nauseum.
Saw a new gp 2 days ago who seems to treat the whole person, ie, listen to my symptoms rather than just go by the results (like my regular gp, who is lovely, but results-led). Got a letter today advising me to increase from 100mcg daily to 150mcg daily! Bit worried this is quite a big leap up, but looking forward to feeling less like my body is hibernating. And looking forward to being able to use my brain efficiently again!
Really pleased for you Rebekah, truly hope you continue to feel well and have great doc there :0)
Have been on levothyroxine for 1year now I was started on 25m then 50mg then up to 75mg about 3wks ago. I asked my Dr to refer me to an endocrinologist because since I've started taking it I've felt worse with endless symptoms the endo said I should be on double the dose I've not much hope this will help tho : (
i was diagnosed with hypothyroidism about ten years ago, started on 50mcg thyroxine then 100 now 150mcg. I have steadily increased in weight over this time. I am citalopram 20mcg also. I live in a continual fog always tired can sleep anytime, aching limbs and lethargic if I could I would do nothing all day.
Latest results T4 12.6 TSH 3.33
aNY ADVICE
hi im on 250mg a day now and still feeling rough had bloods taken yesterday so see what friday brings
Please go back to GP but take some litrature with you, I have printed off some from patient .co.uk for Hypothyroinism - Underactive Thyroid please ensure you highlight the bits that are relevant to how you feel.
Also read and print myths of Hypothyroidism as this needs to be given to every GP that dismisses the condition.
We are not stupid people and we should not be treated as suchso cone on every one lets start pushing for a better understanding of or condition.
I am on 200mcg, and have been for over 20 years, I have been on both lower and higher doses before, until I found the dose that was best for me. It might be worth discussing things with your GP if the dose you are on leaves you with no energy, as according to my last GP different amounts of levthyroxene, suited different people with the same apparent medical need, I certainly am better on a slightly higher dose, but if the dose is too high, it. can affect the amount of sleep you get, which can in turn exacerbate the problem, a less rigid approach in prescribing the drug, allowing individuals to have some input on the amount that they feel happy with, is probably the way to go.
im on 100mg levothyroxine a day and still have symptoms,battle with weight,brittle nails,forgetfull,tired ,iv had private bloods done today so im awaiting results
i veram on 150 levothyroxine daily,since,january,had radio iodene,in october,also radiotherapy the year before on my eyes,as it was the only cure to lower the pressure,all because no one was aware of it being an over active thyroid,untill i was very ill,now my levels are,TSH 0.09, T4 17.4,is this good or do youthink i need ask for a change in meds,as some of you talk about,very tired ache allover,and just want to sleep,struggle w ith work,have irretable bowel,you name it .any advive out there.
HI, I am new around here, I am on 125, thyroxine a day, having what appears to be the usual problems. I also suffer with IBS and have an intollerance to lactose, something my Dr doesn't take seriesly . infact one dr I saw told me I could just stop taking thyroxine altogether. I am "within range" but my T3 is under only just. After a battle I finaly have been reffered to an endocronologist. ( appointment in october),My weight is horrendous, 11 kg over I am officially overweight but that doesnt seem to matter, also I am over emotional at times, bursting into tears for no reason, and being aggitated. I am also tired most of the time.
Reply to this
Have just ticked all those that that apply to me in the poll.
87 boxes ticked, plus 4 of my own. My tests results are in the normal range, so not on any medication.
May be able to afford private testing, but certainly could not pay for private treatment. It just seems like a long & hard road to get anywhere & some people on medication still do not feel better - is there any point?
Hi, I have been on Levothyroxine 100mcg for 5yrs and live in hope that one day I may just get up and feel 'normal'.....forgotten what thats like ! Most days I feel like I'm dragging myself around as my energy levels are low, I'm always tired, always have brain fog, my eyesight has become bad and my hair is falling out badly. Like most of you I agree that a visit to the GP is a waste of time as my blood tests always come back fine. I have read all the other comments on here and decided to try taking my tablet in the evening, then evening primrose and vitamin B in the morning. So far in just a few days I have noticed an improvement ......partically where the brain fog is concerned ! I feel more focused and my eyesight has improved too. Hopefully this will continue to improve and I can stop feeling like I'm losing the will to live ....I have total empathy for everyone else suffering. I'm sick of being made to feel like a hypochondriac because this illness causes so many little problems all at once
I was on 175mg thyroxine and was reduced to 125mg and was not well on either dose. started off on 75mg several years ago then and was ok apart from thinning hair then I gave up smoking 3 years ago and its gone haywire i have had a massive weight gain which i have tried so hard to lose and have only gained, I have had surgery on my eyes because of thyroid eye disease (still not a good look) and i am now more symptomatic than I have ever been also I have been turned down for surgery (hysterectomy) until I lose the weight. My dr. thought the weight may be because of my thyroid but ater my blood test said i was over prescribed and dropped my dose. now apparently I am within the range so no referal for me. what am I to do.I am so depressed and I feel totally let down.
i was on 200mg of thiroxine for years and was still gaining weight depression etc i moved house and got a new doc who said my levels were 25 and needed a higher dose so put me up to 300 it went down to 5 now its gone up to 11 and i now have high blood pressure and varous other things fybro and athritis ?.doc wants me to take 325 i think this is a very high dose ? any ideas please as i have a aotic stenosis and im worried now .thanks
I'm on 50 mcg of Levothyroxine and still feel unwell. Have been taking this dose for the last 8 months. Heading back to the docs after researching further
I'm well on 100 mcg of Levothyroxine but always have some extra 25 mcg tablets, so when I'm really tired of an evening I can up my dosage myself. Doc has allowed me to do this.
Unwell on 225mcg
I'm on 175mcg so what does make me????It will be going up most probs next blood test
I visited the doctor after feeling very unwell, but he only offered antidepressants saying I was depressed. I refused as I knew I wasn't. 6 months later, I saw my fathers gp and he immediately after shaking my hand, took bloods for thyroid problems. The end of the week, I flew on holiday. Whilst away I received many calls on my home phone, and in the end, they called my father telling them to get hold of me as fast as possible as my organs were failing and were in the last stages which would explain why I kept collapsing and that I didn't have the energy to lift any part of my body. Even speaking left me exhausted. I am now on 125mg of thyroxine and have been for about 18 years. I do still have periods where I feel exhausted, but not to the point where I physically could not move any limb. There's a whole world of difference between feeling exhausted and your body failing on you. In comparison to how I was, I am a million times better.
I have been taking 150mg (levothyroxine) for a couple of years having been diagnosed with an under active thyroide for nearly 11 years. However I do get the feeling that all is not well as I have recently lost all my hair from both my eyebrows! I am due for yet more blood tests with my GP next week to find out what's going on. Just wondered if any one else has had this happen to them? Many thanks
I find it terribly sad the way big pharma keeps people, including many doctors, in the dark to maximize their profits. The EU is working hard to make alternative medicine more difficult, giving people no other option but to depend on these drug pushers.
I strongly suggest to everyone with Hypothyroidism here to read the following website -
- STOP THE THYROID MADNESS - stopthethyroidmadness.com/
I have not read the book, but the website has plenty of information not only on the alternatives available but also on how to approach your doctor, what you need to be asking for, and what you could look at yourself for a self-diagnosis.
It's definitely worth the read!
I've also heard some great stories about a chinese herbal medicine called "Thyroid Throu" that has worked wonders for Hyperthyroid patients. A quick google search should give you more.
Unwell on any amount of thyroxine.
Unwell.
I am on 75mgs one day the next day 100mgs and repeat pattern. Bouncing me to see if thyroid will behave, or so they say.
To say I feel awful is a very large understatement.
Not great on 150...got dropped to 125 because of a single blood test and now feel like crap...gained about 28 lbs in less than 4 months...xx
I was diagnosed with Hypothyroidism at the beginning of 2011 and was given Carbamazol by the GP, I was also seen a few weeks later at Hospital I had no visible signs of Graves i.e.Goitre,or eye problems but the Hosp Dr said "I suggest you have the thyroid"zapped" with Radio iodine when I asked what if any side affects there would be I was told to speak to my GP "as she knows more about it" also by then my thyroid had gone back to normal, but, I took their advise (the dr's must know best!!)and at the end of 2011 had the RAI treatment and was put on to 50mcg of Evothyroxine.
Over the passed year I have put on weight,always feel tired no energy,ache all over,brittle nails,sore feet etc.etc.I now have palpitations,feel breathless and my eyes have been sore and watering and have started to bulge,the GP has given me eye drops and has referred me to an eye specialist (the appointment could take 17 weeks) but she still insists that my levels are fine!! how can that be right? Please can someone tell me what more I can do because I feel that I'm getting nowhere.
I was on 300 mg about a year ago after levels fell/ rose to a dangerous level- due to brand being recalled through absorption problems. Put on different brand and blood levels started to improve. However symptoms still remain as bad as ever. Also put on 2 stone in 4 months even tho I eat healthy and watch what I eat!! I am now on 200 mg but feel worse than before even tho bloods show I'm being over medicated. Blood tests again next month but with the addition of other tests - vit d vit b12 iron ferritin folate. Hoping Dr may agree adrenal test. Don't hold out much hope to feel better and lose weight soon. Resigned myself to the fact I'm over 50 and got under active thyroid.
W3ndy2159
Previously 150, I felt swollen, doctor said I would have lost weight not gained it, blood test revealed too higher dose, 125 lost 2lbs in a week! I have ranged between 100-150 for 11 years and have never felt we'll since having it! Doctors don't listen, if only we all had enough energy to lobby the BMC!
My TSH was 8.1. I was taking 25 mcg for 3 days.Yes ,3 days.I was unwell, so I decided: I won't ruin my life with this!!! After 3 days I am stopped the T4,I realized that my appetite is much bigger than was before.Why is that? The T4 hormone...No wonder people do gain weight taking levothyroxine for years!!!
If you can avoid it! Try something natural, example: armour thyroid.
If you just before taking T4 ,read a lot about it,the decision is in your hand!
I've been on 100mcg of thyroxine for 10 years now, but I'm constantly tired but can't sleep, cold to the point of shivering, my skins so dry it peels and is painful, I suffer with terrible headaches and my periods are heavy and eratic, and ive put 3 stone on. Yet my GP isn't interested in helping me as he says my blood results always come back normal. I don't feel like I'm living I'm just existing!!!!!
I am lucky I have a great GP who listens to me and wants me to feel well so she goes of How I feel my Bloods last time said I needed to reduce dose of levothyroxine to 75 m but 2 weeks in and i felt poorly so went back to doctor and my dose was changed to 5 days 100 2 day 75 checked my bloods month later they fine and i felt great .so just that tiny tweek can make the diferance ,Its all down I think to your GPs attitude as I said I am lucky
I had total thyroidectomy 4 years ago due to having Graves' disease, post op I was on 150mcg thyroxine but this was reduced to 100mcg 2years ago. I have also been diagnosed with pernicious anaemia & have a folate deficiency. 4 months ago I visited my doctor as I was feeling very tired, short of breath, fuzzy head, blurred vision, feeling cold & continually having the cold virus, she told me that I would/should be ok & sent me home, that night I took a dizzy turn & fell out the shower twisting my knee, fracturing my elbow & my head narrowly missing the toilet. 3 weeks ago I demanded my bloods to be checked as I had fallen again hitting same elbow & badly bruising my leg. Two days after having bloods done i received a call from doctor to tell me my thyroid results had came back with very strange readings and asked if I was taking my medication, obviously I am as I no longer have a thyroid & rely on it. He couldn't explain what he meant by strange readings & when i asked if this could explain my symptoms he denied it & told me to increase to 125mcg & have bloods checked again in 8 weeks. I phoned again to speak to a different doctor & demanded to be referred to specialist & she has agreed. Hoping referral is quick so he can sort me out!! Has anyone ever had blood results like this whilst taking their medication?
I take 75 mcg per day. In the beginning I had bad palpitations with this, then went down to 75mc one day and 50mcg the next for 2 months. Went Hyper now back on 75mcg every day and feel a lot better hardly any palps.
Just to say: I am currently on 100mcg and I am feeling well (apart from some physical problems not to do with the thyroid). They tried to up the dose to 125mcg in August last year although I didn't request it and all hell broke loose as it made me feel absolutely dreadful and I got panic attacks and constant anxiety and felt awful mentally even more than physically. It literally took months to return to 'normal' even though I was put back on 100mcg within a few weeks of raising it.
I am acutely aware how the smallest thing can knock you back in terms of feeling well - I have made all sorts of little adjustments to my diet and the supplements I take, and the lack of alcohol and lack of caffeine and the timing of when I take tablets etc. I am so much more in tune with my body now and how I feel - and I have a lot to thank the blogs and questions/answers on this website - so I will now be more confident taking on the medical establishment if things change in the future and I start to feel not so good and have to argue that it is my body and I know how I feel and that they should listen to me and not just let lab results rule the decisions about treatment.
71% of those responding are under (the standard) treatment and still feel unwell. NOT a good statistic, I would say.
My American relatives who are/were hypothyroid have always been treated with brand-name Synthroid (thyroxine) and have always been told in the US not to go with a generic equivalent, EVER, as they say only Synthroid is converted like natural T4 etc. Is there any experience here with branded meds as opposed to the generics we're generally treated with? What is the thinking on this subject? Is it necessary to look at T4/T3 combination therapy, T3 only, or NDT -- OR would a switch to a better-functioning thyroxine be an adequate adjustment?
There are plenty of US people who totally disagree about Synthroid. Some prefer Unithroid or, when available, Levoxyl. Indeed the form which seems to get a lot of praise is Tirosint.
The big US issue is brand switching and difficulty of staying on one make if prescription is generic.
About 50% unwell on 125mcg but TSH supressed at 0.02.
Unwell on 150mcg - just started 10mcg t3 noticed slight difference
Feel quite an improvement in some areas on 175mg/200mg alternate days but have developed excessively dry skin.
Oh my goodness,,those results should be posted to every doctor in the UK,,Thats really really dreadful
this poll shows that the doctors aren't doing their job properly.
Since the papers are ripping gps apart i think this should go nationwide,, its ok i wont,, but its something that clearly needs to be addressed by the nhs!!!!(does that stand for nondescript hospital service?
cant see anything?
Hi Jacky
If you scroll to the top of the page, you should be able to see the pie chart...!? You have to click on results and responses..
L
x
I replied for my mother (as I am not on thyroxine). She is very well on 225mg levo but doctor very resistant to allowing her this dose.
I am now on 200mcg a day feel a little better but for how long? Have seen an Endo she doesn't like T3 as it can cause heart and bone thinning problems but has prescribed a course of high quality vitamins which take 6 months to build up. Had a scan too no prob there so just got to persevere.
had 150mg for 15 years without change after radio active 131,,,last 4 months refused to take any in protest to goverment cuts to my benifits (living on £72,no wonder im only 9 stone yet 6 foot in shoes) and im fine without,SO WE LIVE WITH NONE just the same
Not sure long term if that is correct. We need thyroxine for many organs to work properly. However if you have even a little piece of your thyroid left , you might be fine. Hope so.
I apologize for my English. I've been diagnosed with hashimoto's in 1997, while I was still living in Italy. I've been on 150 mg from 2000 to 2008, feeling perfectly fine, energized and happy. At the end of 2008 I moved to Scotland where my GP won't prescribe me more than 125 mg of thyroxine. I was really unwell on this dose, I lost hair, I gained weight even with exercise and low GI diet, I could not sleep. I kept telling my GP, but he refused to listen to me saying that my blood test results were in the normal range. I asked to see and endocrinologist and he said no. He also said I might have depression (what??). Well, I had the chance to go to Holland for an holiday 5 months ago, and I bought thyroxine there with no prescription. I started taking 150 mg again, and in just 3 months I was fine again. I don't like to self medicare, but my GP is useless. I did tell him I was on 150 mg again and feeling well again, but he all he did was rolling his eyes.
It's showing a pretty damming picture.
Hahaaaa the BTF/BTA should come take a read of this thread. So much for most people feeling well on Levothyroxine. If they had a support forum of their own they would see the truth they're blind to.
Unwell on 50mcg! I've got bloods tomorrow after 8 weeks on the 50's.... Also put over a stone in weight on in the 8 weeks since diagnosis of hypothyroidism 😫
unwell on 175 levothyroxine, Dr trying to tell me it could be Fibromygelia and i know it is Levo as felt ill since i started taking it , i think it is the side affects of the Levo as never had all these problems when i was diagnosed being Hypo i just felt tired now i have a full list of things wrong ! about 10 yrs on it was graves in my teens 25 years free of problems 10 yrs of hell ! and when i discovered others feel the same on Levo and feel better with T3 or NDT it find its all been made unavailable on prescription,
Hi everyone I sympathise with you all i have all those awful symptoms of hypothyroidism I was hyper and became very ill so I had the treatment to kill of my thyroid before it killed me ..unfortunately i had been told I'd need to take eltroxin for the rest of my life that was two years ago and my life has turned upside down I've gained about three stone I'm not even interested in food im always tired flaky skin hair loss swollen feet and well the lethargic feeling and pain all over my body I didn't know what hit me.. two years later on 150 mg eltroxin and they're still telling me it's not working my results always show too many antibodies high t4 and low t 3 but a few months ago I was asked to do trials my endo was carrying out it's a drug used for diabetis called VICTOSA I inject it everyday 1.2grs..and within a week I had so much energy I lost 4 kg in the first few weeks I actually felt human like again first time in two years the swelling aches pains fatigue had all gone within the weeks of using this drug even my nails and hair became so strong and actually grew again 😊 when I returned to my endo he told my bloods were actually on the up for the first time since I got sick.now all this time I was still on 150 mg of eltroxin and he said he'd have to reduce the injections to 0,6 big mistake within a few weeks I was almost back to square one as 0.6 is known as an introductory dose and doesn't have a massive impact on the body and when I returned to the doc with new blood test results it showed my levels had changed for the worse again so he reluctantly increased the dosage back up but informed me I'll have to come off it soon as it's only for diabetis that i don't have it...but it's awful to think this drug actually does work in trials for hypothyroidism and could help millions of people suffering from this dreadful disease where the eltroxin simply doesn't work for everyone especially not me and he's threatened to keep putting up the levels of eltroxin until it died start to work (but to what effect on my body) has anyone else tried this wonder drug or anything similar I'd really love to hear from you Thank you for reading this 💙💖 Mary H.
