Tom

Hello, I'm new to all this two months ago I went to my doctor because I thought I was just worn out, I could not cope with how I was feeling, totally shattered, , not tired in any normal way but just as if I was shutting down, everything seemed to be hard, So I had a blood test and doctor said he thought I might be hypothroid [first I had ever heard of such a thing] anyway he told me to take these tablets [75 mg Levothyroxine] and have another blood test in six weeks For the time I was on Levothyroxine I didn't feel any better but I kept with it and went back for the blood test, the results are

Serum TSH level [XAELV] 4.75 [O.27 - 4.2]

Serum free t4 Level [XAERR] 15.5 pmol/L] [11.0 -20.0]

I have no idea what these tests mean and only by reading this website did I ask for a copy of the bloodtest, all I can tell you is that I feel as bad as i did six weeks ago i.e. before Levothyroxine. The doctor seems to think everything is OK and just told me to keep taking the tablets, what should I do. Any help would be much appreciated. Thanks Tom

28 Replies

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  • You're still hypothyroid, probably from low T3 or high reverse T3.

    Have labs done to check free T3 and reverse T3.

    Not enough information from just TSH and T4 to make a diagnosis but the high TSH suggests continued hypothyroidism.

  • Hello Lozon, thanks for your reply, when you say I am "still" hypothyroid what does that mean, I thought once you were hypothyroid you would always be hypothyroid, Plus I am trying to get copy of my first blood test which has more information on it but the doctors couldn't give it to me when I was there I will have to go back for it. Tom

  • Hi

    Sorry you feel so bad. It can take a while to feel better. You might feel better taking 100mcg of thyroxine as there is certainly room for improvement with your tsh and t4. Tsh is still high, and your t4 is still quite low even though both are 'in range'.

    You could also try supplementing your diet with a good quality multi vitamin as often with hypothyroidism you can be anaemic and low in vit b12. I take a sachet of spatone iron and use a vit b12 spray everyday and it works wonders.

    It takes a while to recover so hang on in there.

  • Hello Wombletor, thank you for your reply, I will try some multi vitamins they can't do any harm. Tom

  • Yes they can! Don't take multivitamins. They do not contian enough of anything to treat a real deficiency, and do contain things you Don't want, like calcium and iodine.

    The best thing to do is get your nutrients tested :

    vit d

    vit B12

    folate

    iron

    ferritin

    zinc

    If you start taking a multivit before you get these tested, it will skew the B12 and folate results.

    All of those nutrients need to be optimal for your body to be able to absorb and convert the Levo (T4) you are taking.

    Also, if they are low, they will also cause symptoms. If you Don't understand the results, just post them here, and we will help you sort out suppléments. But avoid multivits like the plague.

    You need an increase in dose, because your TSH is still too high. But it would be best to sort your nutrients first, if you can, so that your body can use the thyroid hormone you're giving it. :)

  • Hello Grey goose, OK I will look into getting my nutrients tested, does the GP do this, I am rubbish at asking doctors for anything I realize I have to get better at this. I will make another appointment and see what he says. By the way are heart palpitations especially in the middle of the night part of this condition, cos mine is regularly beating like mad at three in the morning. Thanks Tom

  • Yes, they are. Yours are probably because you are still undermedicated.

    Your doctor can do them, should he wish to. Dépends on the doctor, really. Some are accommodating, some are bloody-minded. All dépends. Ask anyway. :)

  • Tom, 'hypothyroid' simply means you have too little thyroid hormone in your system. The Thyroid system is quite complex, but usually, once you start under producing it doesn't get better of its own accord, so you will need replacement hormones for the rest of your life.

    TSH is thyroid stimulating hormone, produced by your pituitary gland to try and get your thyroid gland to produce more. So the higher the reading, the more you need the hormone, but your gland is unable to produce enough. Most healthy people have a TSH around 1 so yours is still too high. Go back to your doctor and ask for an increase in medication.

    Just a warning, a small minority of people continue to feel unwell even when their thyroid levels look fine. But it's a small minority, we just tend to hang around on this board! Unless you are very unlucky you should be fine on the correct dose. But if not there is lots of help to be found here.

  • Hello Ruthi, thanks for that, it's a lot to take in all this, I am going to have to seriously increase my medical knowledge. Tom

  • hi tom , like you when my lady was first diagnosed with thyroid problems [ almost 4 yrs ago ] I didn't have a clue what it was all about , but , with the help and superb advice from the good people on this site I now consider myself a relative student of knowledge of my lady's condition ..... and she now has a semblance of order in her health . One thing that I can recommend to you is that this is a seriously complex condition to gat under control -- but by no means impossible [ as in the case of my lady .... 3 yrs ago she was on a cocktail of over 40 tablets per day -- now down to 4 ] ..... through this site you will learn what you can do to help yourself , and if you have a good g.p. [ like we do ] you may be able to help him / her with knowledge . It will take time , there is no quick fix and your meds will need to be adjusted from time to time until you get to the optimum dosage of the separate meds , for which regular bloods may need to be tested [ my lady's were taken every week and now every 2-3 months ] to adjust meds if ness . it has taken us 4 years , but , we/she are there now . lastly take the advice on board and do your own research before deciding on any changes ...... you will get there if you want to .......alan

  • Hello Alan, thanks for your rely, you are doing a good job there hope it keeps going well, I will take on board what you have said, it seems there is light at the end of the tunnel. Tom

  • Tom,keep reading this site .Look at Thyroid UK site and Thyroid Patient Advocacy and join one or both.In US : Stop the Thyroid Madness site is one of several.Most are run by women - most sufferers by far are women,we blokes are the minority!

    Some folk feel worse when starting levothyroxine ( T4) as the thyroid senses the dose and reduces its production of the hormone. Usually blood tests every 6-8 weeks with increases until the TSH is within range and "normal" .Always challenge "normal" ,we are all different and what we need is optimal replacement which for most is about 1.

    The majority do fine on T4 but it has to convert to the active hormone in the body which is T3 and some folk are poor converters.There are some on a mixture of T4&T 3 ,some on onlyT3 and some who do best on Natural Dessicated Thyroid(NDT) which is made from the thyroid organ mostly pigs.

    But anything other than T4 is usually frowned on by the NHS.

    One consultant told me the thyroid is simple! Which tells you another thing which is that many doctors know very little about it which is why these sites are valuable and why you have to do the work and learn yourself.

    You should also get tested before supplementing : B12,D3, ferritin and folate .

    Multivits. are not a lot of use as each vit .is too small a quantity. Once you know your levels ask here and folk will recommend what they take

    It is a long journey. My first reading of TSH was 102 and is now below 1.It will come down quick on Levo.

    As others have said it is important to have Free T4 and Free T3 tested .Again once diagnosed the NHS tends to rely just on TSH so many on this site use private testing to help manage their disease.

  • Hello Treepie, there is so much to learn, it seems this is a silent and invisible condition, I had never heard of anything about thyroid problems nor have friends I have asked, Does anybody know if it is on the increase and what could be causing it. Tom

  • I had heard the terms but no comprehension of meaning. But subsequently found four neighbours with hypothyroidism! I do not know if it is increasing like Type2 diabetes but suspect it is as both are auto immune diseases.I think there are probably multiple causes of things that reduce our immune systems : the food we eat and what is in it.Gut problems ensue and many claim going gluten free helps. Infections are a probable cause ,see Dr Izabella Wentz's latest blog that I got today.

    It is certainly invisible compared to diabetes ,which I have just been diagnosed with , for which there is much more support

  • Hello Treepie, sorry to hear about the diabetes, just one thing on top of another, hope you find the strength for all this, I have thought about gluten free but when you look into it almost everything has gluten in it. Tom

  • I think you may be wrong about gluten free as there seem to be ever more products in the large supermarkets and health shops that claim to be gluten free. I have not tried as I do not think it is a factor in my case . I could be wrong.

  • Type 1 diabetes is autoimmune, where the cells producing insulin are destroyed. Type 2 is an inability to respond to the insulin you produce - called insulin resistance. It is not autoimmune, and can largely be controlled with diet.

    I don't think there is an type 2 equivalent in hypothyroidism. Hashimoto's is where the thyroid cells are destroyed. There is also a condition where the immune system reacts to the thyroid hormones you produce - mercifully rare!

  • I live and learn Ruthi,so only two auto immune diseases not three! That has to be good. However I have read that whilst diet can be effective many with Type 2 are put on Metformin ( and I know two who have) many eventually find diet stops working and have to go on Metformin and years on some progress to injections. At my age I doubt I will be around to progress that far.

  • I just googled the question and discovered articles between 2011-2013 that suggest Type 2 could be redefined as an auto immune disease . Research has suggested involvement of the immune system.

  • Wow! That's bad news! Can you give us the links, please?

  • Sorry ,I never manage to get links right.Suggest do what I did ,just google. " Is Type2 diabetes an autoimmune disease ?" and a number of sites will appear.

  • when my TSH was that high i felt dreadful, you will prob get a higher dose after next blood test, it takes time but you will feel better x

  • Hello Binkie, thanks for that, it's going to take time I see that now, when I was first given the Levothyroxine I thought Brilliant this will sort everything out, I was shocked when the doctor said I would be on this for the rest of my life but I felt so bad I would of taken anything he offered me. I am happy I found this website a lot of good people on here

  • i am gutted our illness isnt a simple as taking one tablet every morning, it would be much easier if it was lol i now realise that i am keeping 5 plates spinning at all times, optimal dose of thyroid meds, optimal levels of vits an minerals, keeping stress at manageable level, 8 hours sleep and gentle daily exercise. Any plate off balance and it affects how i feel and has a knock on effect.

    I have to keep daily journal as it is not 2nd nature yet but it will be and i have met others whose lives went back to normal and they manage their thyroids well.

    Patience not my forte but i am so much better and compared to 9 months ago when i was so ill i was housebound, its all upwards from here x

  • Hello Binkie, glad to hear you are feeling well, keeping things on an even keel seems to be the key, I like the idea of a journal I am going to keep one from now on, it will be a good reference point for the future, I must try and exercise and would love 8 hours sleep but sleeping is a problem at the moment as am so restless, feels like my heart is pounding out of my chest at nighttime. Tom

  • the exercise is difficult as it uses up all my energy and after long time housebound my muscles are killing me, that stresses me. Pain was one of my main symptoms, i was in pain 24/7 it has almost gone so pain from exercise is depressing but i am going to stick with it as eventually it will get better lol

    the heart pounding was a real eye opener for me as i thought mine was going to leap out my chest until i started taking my heart/pulse rate, i use the stop watch on laptop :) even when my heart is racing it actually never exceeds 74 beats per min, same way when i feel OTT hot an sweaty my temp never over 35.8 so some symptoms are really deceptive. Pulse an over heating are hyper symptoms and confused me BUT my actual readings are still hypo!! my temp an pulse very low.

    It is certainly a learning curve xx

  • I don't want to depress you but the thing doctors defintely don't tell you is that nothing happens quickly with hypothyroidism - it's not a case of starting the treatment and feeling back to normal straightaway. You say you saw your doctor 2 months ago, but this probably started a good while before that and you've been gradually going downhill. I think the advice to seek a higher dose is good - I don't think anyone gets well on the initial dose, but doctors like to increase gradually so as not to harm the heart, especially if you're older? But there are lots of other things you can do to help - like checking whether your vitamin D and B2 levels are good and eatiing well. Keep checking back here - you'll find so much help and advice.

  • Thanks for that Pink bear, I am learning a lot from this website

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