What medication are you on?: - Thyroid UK
Please select one:
I take purified levothyroxine which is made up with just calcium phosphate so there are no other fillers in the capsule. They have to be specially ordered.
How do you get the purified levothyroxine - is it prescribed by your gp - when I asked my gp if she could state on prescription a specific generic brand she said no it was whatever the chemist had in stock and that gps were not allowed to state specific brands
I was on NDT and would be on now if it wasn't for the fact that my local PCT took advantage of the recent shortage situation to remove all NDT products from ther prescribing list. Hence my GP can no longer prescribe it even though he's quite happy to do so.
Why do I still display the same symptoms as I did before going onto 150mgs of thyroxin for the past 5yrs?
Buckie, in my opinion (as I am not medically qualified) this will be because you are not fully medicated.
What was your TSH and Free T4 result when you last had a blood test? TSH needs to be under 1 and your Free T4 needs to be at the top or above the lab range.
hi Buckie, i so no where you are coming from. last sept i had a total removal of my thyroid due to cancer. i have since been on 150mgs of levothyroxine. my TSH is now 3 which is good. but im getting symptons still. i actually feel worse than before. im getting fatter, brainfog still there. tiredness that just does not go away.. i have been trying to gets bloods done for T3 after talking to LYN mott from thyroid.uk.. but my GP refuses to look at this, saying my TSH level is good .. so no need to look at T3 levels.. so frustrating... all we want is to feel normal...
When your Gp gives you the blood test form requesting the Tsh and T4 tests simply add T3 to the list and tick the ferritin box to see how your iron is. It works for me! I would have thought you would feel better with a lower Tsh (between 1 and 2) achieved by increasing the amount of T4 you take . Apparently the correct dose is" that which restores good health and in most patients will be associated with a level of T4 in the blood towards the top of the normal range or slightly higher AND a TSH level in the blood which is in the Lower part of the normal range" I think thats a quote from the british thyroid foundation newsletter issue no23. Im soooo fed up with gaining weight and being tired ad having a foggy/custard brain!
Wouldn't it be nice if doctors were paid for how successfuly they treat you rather than how many patients they can cram onto their lists! We can but dream...
I was on 100mcg levothyroxine & was feeling dreadful with all the hypo symptoms. Went for a blood test & it came back 3.9 & I was told by a female doctor at my practice, I didn't need upping. All my symptoms were put down to my age (I'm only 61!!) I then went onto the TPA website & learnt SO much about the Thyroid. I waited a couple of weeks until I could see my normal doctor & I think he was surprised to see how much I knew (considering the brain fog!) & he upped me to 125mcg. After about 6 weeks I'm feeling much better but not perfect but at least the dreadful depression I had has lifted. I'm trying to get my TSH levels down to around 1 & under which is apparently the best place to be. The majority of doctors don't know anything about the Thyroid only the guidelines told to them. So don't give up & try to get them to up your dose when you are still feeling bad
I'm on Levothyroxine (200mcg)
Sparkie,
I am on 125mcg Levothyroxine and 10mcg Liothyronine, the big question will only take one option.
Hi, after a virus infection I've been told my thyroid doesn't work anymore... very annoying! so after having TSH of 34 worked my way up to 150 mcg levothyroxine and I've been told I'm fine now (TSH 1.25 at last blood test), but I'm not!!!!! I'm still gaining weight and very depressed at times, but also at other times I'm experiencing palpitations and hot flushes and sweating... Am I a yoyo? People say I need to exercise more, ha, ha, I walk 15 miles a day to do my shopping and I earn my money as a cleaner (I tell you, very physical!) My doctor tells me I have to learn to live with it, is this right? Most of your comments don't leave me with too much joy... any tips would be handy though, thanks!
Hi All,
After reading most of the comments im more depressed then ever. I broke my neck 2 years ago that kick started other stuff im now waiting for a kidney transplant and have been treated for graves with Rai after being on Carbimazole for almost 18 months. I have gone from a size 6 to a 14 in a matter of months since they destrpyed my thyroid and put me on thyroxine I have never felt so sad or ill in my life my broken neck didnt effect me the way this has. i am having horrendous panic attacks wierd thinking and very bad depression I have so far refused the anti depressants to try to preserve the 17% left on both kidney.I live alone sadly several of my closest friends have moved to Spain and France so ive lost my support system 
I just cant stop the tears its been a terribe few years is there no hope?
<b>Updated on Aug 23 2010 10:33PM:</b> Sorry new to this so if ive written this and put it in the wrong area sorry in advance .
Hi I am presently on 100mcg's I have high level of Reverse T3 , low TSH, . Still feel shocking but I have an appointment with an Endo in the morning!!! yippee (i hope so) lolxx
Hi I am on 125mg of Eltoxine Levothyroxine, When I was on levothyroxine it made me really ill, since changing over to Eltoxine, and I had a huge struggle to get it but once on it foe a few months the really nasty side effects slowly left me. Because in this county they only give it in amounts of 25mg I dont think I will ever get the balance perfect but I will have a dam good try. In America you can get it in smaller amounts, like 5mg so you can fine tune it more.
Testing
I was doing fine on Armour and T3 but stupidly moved house to one 300 miles away. The new unenlightened Gp in that area refused to continue with it and would only give me T4. yuk! does not suit! after a monumental 5 yar struggle they have finally added t3 back in. I am still not right but at least the t3 has alleviated the chronic depression. Its now a see saw to get the dose right weight on, then off, clear skin, awful painful facial acne. Ho HUM!
There are so many people for whom Levothyroxine or synthetic T4 just doesn't work. I hope most of you know that T4 is a 'grand-fathered' drug. Synthetic T4 (or Levothyroxine or Eltroxin or Synthroid) was invented before the requirement for drugs companies to do animal then human trials which demonstrated improvements in symptoms over the long-term.
So, synthetic T4 has NEVER had to go through that. Synthetic T4 does not contain all the hormones our own thyroids produce.
Is it really surprising that synthetic T4 can be for some of us such an abysmal failure? I don't think it is surprising at all. Everything has to work right in the body for synthetic T4 to work. Vast numbers of people can't use synthetic T4 without problems - don't waste too much time on it - life is too short!
After around seven years of sheer hell I switched to T3, after a trial of natural Armour thyroid (which also failed). T3 can usually be made to work if you know how to use it.
My suggestion to anyone who has been ill for a long time on T4 is to scour your county or area for a doctor who will prescribe something else. Ideally, natural thyroid and if this doesn't work or you are feeling really ill then try T3 (don't listen to the docs who suggest taking T3 only in just two doses. If you are just on T3 then take it 3 or 4 times a day).
Paul
There's no option in the poll for people on a combination of T4 AND T3
I take T3. It was like the light had been switched on again. Besides taking meds and adrenal support I try to eat properly take vits and minerals and I exercise. I also use Melatonin for sleep. It took me a few years to find a decent thyroid doctor. I feel that through Facebook and the websites it's far easier today.
Today it is 63% Levo, 6% on T3, 7% NDT, 6% other and 19% none. no combo option except 'other' (but most replies are from last year)
Should this poll be resubmitted? I'm wondering if the T3 percentage will go up as folks/GPs become more aware?
50mcs!!!! of levo originally 125mcgs and too much for me!! and l had thyroid removed 2007 guess how ill lve been? lab range normal dont have copies and totally pissed off with joint and muscle issues 3 rheumys later other than athritis lm at end of my tether!
My thyroid was removed in 1975 and I still don't feel well. Meds upped then reduced over and over again. Blood tests normal despite how I feel and GP not interested as long as the tests are good. I wish I had not had the surgery.
I alternate 100 & 125 mcg - feeling really tired last 2 weeks; my skin is looking really grey & pale - will be visiting GP in a fortnight
I was born with my thyroid not working so have been on medication all my life. I was told when I was discharged at 16 that I would only ever need to be on 150mg of T4 (levo) However since being discharged my dose was constantly raised by doctors who did not understand the condition. I came up to Norfolk and was on 500mg!!! My new doctor who is awesome consulted with the rest of the practice and the clinical chemist at the local hospital to try to figure it out. They put me on T3 which has a much shorter 1/2 life than T4. And since then I have been fine. I am now taking 120mg of T3. I do need to be careful when I have a blood test as if I take the tablets before it gives a different result to after as they get into the blood stream quicker. I do suffer from depression and carpal tunnel and losing weight is a whole other issue but once you find a good doctor you will reap the rewards. However many don't know much about the condition so you have to be patient and I would advise making a log of symptoms you are experiencing.
You are indeed fortunate to have found a good doctor and have improved by switching to T3. I notice you have carpal tunnel and this is a link re carpal tunnel from Dr John Lowe
web.archive.org/web/2010122....
Thank you. I have already had 1 operation for it and the success rate is only 60% for the next one. the Depression and IBS is the hardest things now. i just hope my story gives people a ray of hope that it can be sorted. it took 30 years though! i forgot to add that i dont synthesise T4 hence why on T3 now.
I hope the next op goes will. Your story will certainly help people as people get despondent when they find T4 isn't making them feel any better but many GP's insist that it is the only thing. I didn't feel well at all on T4 but have switched to Naturethroid and am fine now. No symptoms. Hopefully your depression and IBS improve enough to make you feel better.
Regards
if you would like i can put it in a blog so it can be read by more. i know the benefits of sharing the story as i am an admin on a FB page for people with depression and other issues.
Yes, your story will be helpful. Some people are having awful struggles.
How to find your FB page for people with depression and other issues?
Taking NDT Erfa. I have started 16 days ago and my current dose is 3/4 of a grain. I feel slight improvement in my general energy levels. Too soon to tell if Erfa is going to be the right medication for me. I wish that this is the one.
I take liothronine as of this week and have taken levothyroxine for many years.
