I read somewhere on the internet that if you have near normal hormone levels or borderline then levothyroxine will not work at all, !! another friend of mine who worked for years in a doctors surgery suggested i took half in the am and half at night,, I feel worse by the day and keep hearing my doctors words you have to get worse before you can get better, then she mentioned that i may have something wrong with my heart,,I have never in my life had any trouble with my heart until i took levothyroxine and i keep experiencing palpitations !!!
I now think my doctor should be struck off i feel shes trying to kill me, i know this sounds dramatic, but im told i should have more blood tests than my doctor wants to give me, and she keeps refusing to let me have a printout of my blood tests, and she was very reticent to refer me to a specialist,,,!!!
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Levothyroxine will work on borderline hypothyroidism. It wouldn't be prescribed if your TSH was normal ie within the lab ref range. 50mcg is a starter dose and should be taken in one dose, with water on an empty stomach, an hour before, or two hours after, food and drink, two hours away from other medication and supplements, and 4 hours away from calcium and iron supplements. T3 and NDT are the thyroid medications which are usually taken in split doses.
Palpitations can be a sign of both under medication and over medication but can also be due to low iron, vitamin D, B12 and folate.
Tell your practice manager or GP that the Data Protection Act entitles patients to their test results and you want a print out of your last test results with the lab ref ranges. If they won't give them to you contact ico.org.uk/for_the_public/p... and your CCG to complain and ask them to instruct the GP/practice manager to provide them.
Ask your GP what it is she thinks is wrong with your heart, and what is the treatment plan for it.
Blood tests can be suggested and requested but no one can force a GP to order them. You can ask another GP at the practice but, if refused, your only option is to order and pay for your own tests via someone like Blue Horizon or Genova. thyroiduk.org have a list of private labs.
Your GP isn't killing you She is following protocol with your treatment but if you don't have confidence in her see other GPs at the practice or change GP practice. Hypothyroidism isn't referred to endocrinologist's as a matter of course. If you are not responding to treatment in a few months a GP will probably consider referring you.
You were probably slowly becoming hypothyroid over months or even years, it didn't happen overnight, and it may take months until you feel well but you should experience improvement in symptoms. While a person may initially feel worse when they start taking thyroid replacement this should pass after a couple of weeks and some improvement in symptoms should be felt. When you can post your results we may be able to be of more help.
I can only presume the bits in brackets pertains to the name of my doctor and the other numbers are about the time the test was done ?
but i had a previous blood test 21 march and that was a full blood count no action..
I don't know why I'm feeling this dreadful, shaky legs, ringing in my ears and every day I take this levo Im feeling worse,
I take supplement vit b 12 and vit d and zinc, and other multivitamins also krill oil , eve primrose oil c and vit c and calcium as i don't want to collapse,, but im so weak and tired and fuzzy ,,,its not making sense.. can you shed any light on this?
Astro, the letters in brackets may be the type of test used. The numbers show that you are VERY hypo and need treatment, or if you are already on treatment, you need more of it. TSH for example is showing at over 15 when it should be between 0.35 and 5. Your t4 is right at the bottom of the range at 9, so no wonder you feel so unwell.
I have currently been up all night as i cant sleep. i visited my brother in hospital after his bowel op , and got home my legs were shaking badly , I,ve calpul tunnel trigger finger, my ringing in my ears is dreadful all i wanted to do was sleep, i managed to sleep for a couple of hours and then i couldn't at all,, i go to the loo every half hour through the night and feel awful.
I asked my doctor to refer me to a specialist and she said what do you expect a specialist to do that we cant, i said well two out of the four blood tests were for the wrong thing, and the bit you say that is right at the bottom of the scale this t4 it says no action,,
so you say im very hypo,, i know i feel really bad and feel much worse the longer i am on 50 ml levo every day i feel worse and worse and i don't think my doc wants to refer me ..as she said where do i find this specialist? I said to her well its your job to find me one as your my general practitioner,,,!!!
SO more levo would reduce all these symptoms and hopefully make me feel normal again? im walking about like the living dead!!!
Yes I was up most of the night too, compiling a stroppy letter to the hospital in my head! Yes I believe you will feel better on more medication, but you will need to check out and address any vitamin/mineral deficiencies too. You will get lots of help and support here. Hope you get some rest today xx
The comment on the T4 about no action is just an automated comment from the lab, and means nothing on its own. GPs look at just TSH usually and yours should be around 1. The fact that your t4 is so low is bad, but most GPs won't understand that.
thankyou so much for bothering to reply,It helps me so much ,,
I have to know what's going on,when my body messes me up, i had a dreadful experience when i had breast cancer of not understanding what was happening and it nearly sent me mad,,#
I realy couldnt go through a repeat performance of that,,
however I still dont fell well enough to work as I still have this dreadful
BUZZING thing all through my body which makes me feel like my bloods all sizzling,, its horrible as i sort of shake, and this white noise is very disconcerting,,thankyou so much for your reply and i hope you get some rest too xxx
Pituitary gland produces TSH to prompt thyroid gland to produce FT4. FT4 is an inactive store of hormone which is converted in the liver to produce FT3 which is the active hormone that supplies every cell in the body. When your TSH is high it is because the thyroid isn't responding to produce enough FT4.
Harry's explained that your high TSH and low FT4 are why you feel so ill. Some people are very unwell when their TSH is 3 so its easy to see why you are feeling so bad. As your TSH decreases your FT4 should increase enabling more conversion of FT4 to the active hormone FT3. This should resolve some, but maybe not all, of your symptoms and make you feel a bit better until your TSH is down.
You don't need referral to an endocrinolgist yet as you're not yet on an optimal dose of Leothyroxine. If, when you are optimally dosed in a few months, your symptoms continue although your TSH and FT4 are in range, your GP may decided to refer you.
I assume that these were your results in April when your GP prescribed 50mcg Levothyroxine? You will need an increased dose but your GP is right not to over medicate you at the start because thyroxine is a powerful hormone. After your next blood test, which should be 6/8 weeks after you started Levothyroxine, your GP will probably increase your medication by 25/50mcg. You may need a further increase 6/8 weeks later depending on your blood test results and symptoms.
Don't forget that you shouldn't take Levothyroxine on the morning of your blood test as it skews the result. You can take it immediately afterwards.
Its just this terrible internal buzzing and white noise thing , i cant take too much time off work as i don't want them thinking im swinging the lead,,but i have no energy and my bursitis on my hip isn't healing , i cant walk and my job involves allot of walking,however
i need to get completely well and i still cant really get my head round why this has happened or how it happened or what went wrong with my pituitary gland and why,,
some say its stress,, maybe ,,i just feel worse each day, not better, and i thought this was supposed to kick in not make me feel worse..
Ive been on it since 24 April so its about 4 weeks now,
I have read how powerful levothyroxine is,its very scary,in fact the whole hypo thing is very scary as i seem to be totally reliant on painkillers as until the pain in my hip has stopped and the aches and everything you good people have experienced,,have stopped i cant function,,,i feel like a cripple and that's not me,,,
but thank you for your reply, you've obviously got your head round all of this and its just taking me more time than i am happy with to understand all this and why everything is such an effort,,,
There's nothing wrong with your pituitary gland, it's doing its job. It's your thyroid gland which isn't working properly. You will feel better in a while and it will help if you don't over exert yourself. If you can't take time off work you must rest and conserve what energy you have.
It's taken me two years to get my head around this and most of it went in and was forgotten an hour later until I began to recover.
I just need to know there is light at the end of this tunnel.
Have you any idea what makes the thyroid do this all of the sudden,?
I am taking time off work, and trying to rest as much as poss and i think i may ask the doc to sign me off for june too,,i dont like the sun so it wont be anything to do with that, i just want to get well as do we all
as my short term memory has gone completely with this thing and i even have to concentrate on walking.
its hard at the moment as my mother is ill and is looking after my brother after his bowel op so they need help and i feel so useless,i just want to sleep and cant,,
but thankyou for your support and all the good you all do on this fantastic blog,,
like i did for cancer i will endeavor to raise money when i am a bit better for this,, i cant thankyou enough
can relate again to you also - I have palpitations regularly - I am on 75 (brought down from 100) when im sitting at night watching tv I either have palpitations or my heart beat is irregular - its truly a weird feeling - but didn't think it was killing me so just put up with it - don't know!!!
The palpitations, tremors and shakes I had on Levothyroxine for 18 months were intolerable until I added T3 which seemed to calm everything. I still get them when I exert myself or become stressed but I think it's a fitness issue now after almost 2 years of inactivity.
i read what an awful time you had of things and im sorry that you suffered so much.
however you seem to be very knowledgeable about all this and im very gratefull as i would think is everyone you answer,, please can you tell me what T3 is and how i can get the doc to help me as i have now posted my bloods,,and harry e says im very hypo,, so i dont understand the limited information the blood test said? other than the fact im feeling worse each day!!!
Liothyronine (T3) is another medicine Astro. I have no thyroid and sometimes thyroidless people are unable to produce enough FT3 on Levothyroxine alone and need the addition of T3. When your Levothyroxine dose is optimised you will hopefully be producing enough FT4 to produce the FT3 you require.
thankyou for that, yes i do seem to be suffering from a great deal of them , I am diagnosed hypothyroid
and a friend of mine who worked in a doctors for many years said try taking half the tablet in the am and half in the pm but the tablets as you all know are weeny...
i do take it with water in the am usually as i tend to forget at night , but i learn that not taking this peculiar drug is also very dangerous...i am walking around like a 105 yr old not 51 year old ,i feel dreadful and i don't know what to do with myself..this thing has totally changed the way I normally am, my heart goes out to each and every one of you fellow sufferers,
Thankyou so much for bothering to put this here ,
Kind Regards
Astro
Neither am I. I do have hashis but it is closely monitored as my thyroid is still working well.
I had constant palpitations when on levothyroxine which went when I changed my medication and adding some T3 helped a lot. Proper doses of thyroid gland medications protect the heart rather than undermedication.
This is a link re a low dose of thyroid gland hormone. It is from an archived site and links within may not work. Go to the dates November 25, 2002 and November 20, 2002 to read answers of the effect of a low dose of thyroid hormones although questions differ slightly to yours.
T3 is made in the body from the T4 medication you are taking, usually. It can also be taken was a stand alone medication. It really is too early for you to try that, you may do well on what you are being prescribed given enough time. How long have you been taking your medication?
There are many people on levothyroxine who started when "borderline". I can include me!
It most certainly has an effect and lots of symptoms I had before treatment have disappeared.
It is quite usual for people to start levothyroxine then have another blood test 6 to 8 weeks later. Have you had another TSH test? If not, I suggest it is time to have one and for your dose of levothyroxine to be reviewed.
Thyroid UK's own lists of hyperthyroid and hypothyroid symptoms are on Thyroid UK's main website:
I am reading up lots on it,, its something I have to try and understand it as im going through it, when ones body decides to mess up with no warning,,!!!i had that once before with breast cancer it nearly drove me mad let alone nearly killed me,, but I have to say ive never felt so rotten before,,nor so jagged and old,,I was feeling fine a few weeks ago albeit unexplained bouts of tiredness and falling asleep at the drop of a hat,, not good when at work, and according to my fella I used to fall asleep mid sentence,.
Highly embarrassing,.
I feel that it may have been the case that my thyroid was going over an amount of months and then finally when my family were all ill at once and i had a lot of stress at work it buckled,, but i find it hard with all these sleepless night s, and this buzzing in my head and shakey body and calpul tunnel and all the bloomin horrible symptoms of hypothyroidism , been on this drug since 24th, so i think another two weeks before another blood test,,
Astro, I'm not sure why I ran across your post and hope you are doing somewhat better. Both the breasts and thyroid are dependent on iodine or iodide so the fact you have both problems is not surprising if you have been iodine deficient, but thinking how much stress you have gone through could be part of your thyroid treatment difficulties now. Your levothryoxine (T4) needs to convert to T3 to be effective and you need good adrenal function to accomplish that. When you mention the effects you are feeling, it really resembles an adrenal problem but to be sure a saliva test would be needed, which is another test they refuse to do. It's not easy to get good treatment as it is a complicated condition. I've been posting these helpful videos that help explain a lot.
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She is following protocol with your treatment but if you don't have confidence in her see other GPs at the practice or change GP practice. Hypothyroidism isn't referred to endocrinologist's as a matter of course. If you are not responding to treatment in a few months a GP will probably consider referring you.
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