Total Noob And A Bit Confused

Hi all,

I've just joined the group after being diagnosed with an under active thyroid a few moths ago.

I'm a male (45) and I've always seemed to have the symptoms of an under active thyroid (cold sensitivity, cold feet, dry skin, tiredness and so on) so it was actually a relief to get a diagnosis after suffering from all these vague things over the years.

I've started my med's (Levothyroxine 50mg) and to be honest I seem to be feeling worse if anything.

I've started acting quite irritable, having cold sweats at night, still tired, losing sensation in my toes and SO cold. Brrr! My wife even found me passed out on the bathroom floor which is a bit of a worry.

I'm just wondering if it's normal to get some adverse affects until I get my levels sorted?

I've been looking on the internet but a lot of the general health sites seem to be a copy + paste of all the others regarding information.

Sorry if this sounds a bit vague as I'm still doing my best to find out all I can about a pretty vague condition.

Thanks in advance.

:)

28 Replies

oldestnewest
  • If you've been on 50mcg for a 'few months' you are probably

    undermedicated. The norm is diagnosed and medication 50mcg being a starting dose. Blood tests around every 4 to 6 weeks with increased medication until you feel well and on optimum. Thereafter a blood test every year, except if symptoms reappear then it's a blood test and repeat of sequence.

    You have to get a new blood test to check your thyroid hormones. Ask for TSH, T4, T3, Free T4 and Free T3. Ask also for Vitamin B12, Vit D, iron, ferritin and folate too if you've not already had them.

    Yes, you can feel unwell initially on thyroid hormones but if you're on too low a dose you can feel even worse.

    Take levothryoxine first thing with 1 glass of water and wait about 1 hour before eating. Don't take other medication/supplements within 4 hours of taking levo.

    Always get a print-out of your blood test results, with the ranges, and post on a new question for comments.

    We have to read and learn, GPs know little it would appear and if your TSH reaches the 'normal' range they stop your medication. This is wrong, we should be medicated until we feel well but some refuse increases. Of all the thyroid hormones our body produces is T3 (the active hormone) without which we cannot function. It is the hormone which drives everything. We have billions of receptor cells in our body and T3 has to saturate each one. T3 is also known as liothyronine. Sometimes we cannot convert T4 (levothyroxine) into sufficient T3. Taking vitamin C with levo can help the conversion.

    On your next blood test, don't take levo until afterwards, get the earliest appointment as TSH is highest then. Make sure your vitamins/minerals are towards the top of the range.

    thyroiduk.org.uk/tuk/treatm...

  • Thank you SO MUCH!

    I can honestly say that I have learned more about what I have and need to do from your post than I have from searching the internet and from my doctor.

    I've just been searching posts on this forum and started to read about the supplements/vitamins which is all new to me as well.

    Are these things that can be prescribed?

    I'm continuing to have my bloods done but I only get to see the nurse.

    I had one recently. Not sure what it was for. The nurse didn't either. Haemoglobin Antibodies I think.

    I'm going to take what you've told me and go see the doctor I think.

    It's very difficult to ask them questions when I don't have a clue what to ask.

    Again, very many thanks. :)

  • I am really confused working on the theory of medical practitioners that they test for antibodies but then when you come back positive do nothing about them anyway lol. The logic behind their practices baffles me more each day.

    The help here is amazing. I am relatively new here myself so I hope you find all the information you need to feel better. :)

  • If you ask questions of a doctor about the thyroid gland. I would be very surprised if they knew how to answer you. Before the blood tests were introduced all medical students had a good grounding of knowledge of clinical symptoms and treated the patient thus. Nowadays, with the blood tests, doctors usually diagnose according to the TSH and clinical symptoms, instead of being treated with thyroid hormones, are given medication for the symptom, i.e. pain relief, anti-di's, etc etc. You are lucky indeed when your TSH reaches the appropriate level for medication. That again is only the start of another journey.

    If your B12 and Vit D are too low, the GP should prescribe. If not you have to self medicate. B12 and Vit D are hormones rather than vitamins. B12 for neurological (nerves, dementia etc) and Vit D for bones etc. If supplementing with B12 it has to be methylocbalamin and sublingual are best as they by-pass stomach. Vit D is usually D3. PS if B12 too low they should test for pernicious anaemia (another autoimmune).

    thyroiduk.org.uk/tuk/treatm...

    thyroiduk.org.uk/tuk/treatm...

    If you have antibodies that means you have an Autimmune Thyroid Disease, i.e. hashimotos.

    thyroiduk.org.uk/tuk/about_...

    Make an appointment for blood test, ask for as many as possible as some labs wont do them if TSH is 'normal'. Get a print-out with the ranges a few days later (we are entitled) and post on a new question.

  • Up to this point I have been so in the dark regarding my Hypothyroidism.

    I hate not knowing and this morning my eyes have been opened thanks to you shaws.

    I only remembered the "antibody" part because the nurse said "Hmm. Dunno what that is".

    Seems mine are normal but I now know what it is.

    Thank you for those links and I'll follow them and get stuck into learning about what I have.

    Thanks for taking the time and having the patience to explain this to me.

  • BTW. My Doctor has been really good about this and I do understand their time is limited with each patient.

    She actually recommended this site!

  • Also never accept Normal from your GP - the result may be in range - but that does not mean it is normal for YOU. We are after all individuals :-) I am fortunate to have retired to Crete and the tests I request are not questioned or deemed irrelevant. Here they have a good understanding of Thyroid - blamed on the UN submarines of course ! - but they are more inclined to look at the whole body. On the other hand - there is no MRSA as it is rarely tested :-)

    It is sad - but we do have to read and learn and take control of our own health. After all no one cares as much as we do about our own health....

    Check out my profile and read the edited version.... I have learnt so much from this forum. On reading all the information you then have to put it into practice :-) Can result in a bumpy journey but one worth taking :-)

    Good luck :-)

  • Hi Scotty1969, unless you are elderly or with heart problems, my understanding is the usual starting dose for levothyroxine is 75mcg. I started on this dose and my TSH actually rose, it wasn't until I got to 175mcg I felt any benefit, and that was minimal.

    Regarding thyroid antibodies, mine were in the normal range at first, but 1 year later they were in the high 500's

    Do you think you may have some adrenal issues? This can happen if you have had untreated hypo for some time. This can cause fainting, it may be worth you looking into symptoms of adrenal fatigue.

    One thing I've learnt the hard way is your iron has to be optimal for the thyroid meds to work. As others have said get your vits and minerals tested too.

  • @Helcaster

    I'm going to check out the adrenal side as I fear I've had this for a long time.

    I've always had problems staying awake through my 'afternoon slump and my Mum said I had cold feet when I was born. O_o

    Also it's slightly reassuring to find out there are fainting issues as I don't feel stupid now about asking my doctor.

    My face was a real mess for a couple of weeks after it happened.

    I'm going to ask and look into vitamins, minerals and things.

    I'm a vegetarian so could be lacking iron anyway.

    @Marz

    I check that out, thanks. :)

    "It is sad - but we do have to read and learn and take control of our own health. After all no one cares as much as we do about our own health...."

    That is SO true!

    I've go so much to learn but at least I've found the right place. :D

  • Scotty, B12 is only obtained from meat, fish and eggs. Vegetarians can't obtain it from plant foods and must supplement methylcobalamin to avoid B12 deficiency. Don't supplement until your GP has tested B12. If you are deficient you will need loading injections to correct your deficiency and can then supplement subligual lozenges, spray or patches.

    This link explains hypothyroidism thyroiduk.org.uk/tuk/about_...

  • Thanks Clutter. That makes perfect sense. I also read that link and I eat a lot of soya and also kale and cabbage.

    I can see a few life changes coming on.

  • Scotty, soya is very thyroid unfriendly. When you stop taking it you will absorb thyroxine better and your symptoms should improve. Some have needed to decrease dose after stopping soya.

    Lightly cooked kale and cabbage and other goitrogens are usually fine but are best avoided raw for hypothyroid patients.

  • @Marz

    Just read your profile and you've had lots to contend with but respect to you that none of it has held you back.

    I used to do meditation a lot too but I had to stop due to falling asleep but hope to get back to it. :D

  • ...you will :-)

  • If you want to learn about your thyroid and the associated problems that come with it, the following books are often recommended :

    amazon.co.uk/Your-Thyroid-H...

    amazon.co.uk/Stop-Thyroid-M...

    amazon.co.uk/Hashimotos-Thy...

    The third link is for a book about autoimmune thyroid disease (Hashimoto's Disease). If your antibodies are not a problem then this may not be relevant to you at the moment. It is worth pointing out though that 90% of the cases of hypothyroidism in the UK (and possibly the rest of Europe too) are caused by autoimmune problems. So, just because you have never had a positive result on an antibody test doesn't mean that you never will. It just means that fluctuations in levels haven't been caught with a blood test yet.

  • @humanbean

    I think I've got a few additions to my Xmas list now. :D

    I read the description on the "Stop the Thyroid Madness" book.

    Never realised that it was so under recognised and under everything really.

    I've been looking long and hard and making very little headway into Hypothyroidism and today my head's spinning..... but in a good way.

    I'm finding more and more the importance of getting educated and taking more control of it myself.

  • If you have Hashi's read Isabelle Wentz's book. I have also got Stop the Madness book on order and just downloaded Could it be B12? Which is certainly an eye opener!

    Good luck with information gathering.

  • One thing to bear in mind with any health books on any subject is that there can be different terminology and different units of measurement used in the US and the UK. The first book I linked to is written by a Brit, the other two are by Americans.

    Good luck. :)

  • Another good one to learn thyroid physiology is amazon.co.uk/gp/product/149...

    There are five case studies written in layman's terms that are really helpful in learning thyroid terminology.

  • @Marz

    "...you will"

    Just had my Vit C and dusting my kneeling stool off. :D

  • Thanks Nickinoo1! :D

  • Wonder if they'll make films from those books.

    I'm also dyslexic (diagnosed at 45) as well.

    Must be a late bloomer.

  • A first ever faint led to my diagnosis,although it was first said to be dehydration. I was wondering why my toes were hurting and what was buzzing in my ear. Then I realised I was on the bathroom floor holding my shaver next to my ear and my toes must have hit the wall.Lucky to have no more damage.

    You will have to increase thyroxine after each blood test until " normal" but preferably TSH close to 1 and maybe lower.

    The books are valuable but the first is meandering and the index is poor and the second is written by a woman and aimed mainly at the 90% of sufferers who are women . It is still a excellent resource if you ignore the American use of language.There is a book by Joan Gomez " coping with thyroid problems" which can be found for a few pence on eBay. It is a simple account and rather out of date but still good for an overview .

  • LOL! "Buzzing in your ears". That's priceless. :D

    I was in the bathroom and the next thing I knew was my wife trying to get in and asking me why I was on the bathroom floor. I replied "I'm not".

    I then opened my eyes to find I had my head through the bath panel and under the bath with my face covered in blood. Really lucky though and happy to still have my teeth.

    I looked like I'd been a few rounds in the ring though.

    I was unbelievably cold yet soaked in sweat.

    Scary stuff.

    Deffo going to check those books out, Thanks! :D

  • but what levels are

    ferritin

    folate

    vit b12

    vit d3

    if your ferritin and folate are low the levothyroxine cant be used by the body and you will feel worse

    get ferritin tested PDQ as I suspect you need iron plus at least 100mg vit c fast

    you also need to take a really good multivitamin last thing at night

    hypothyroid trashes ferritin , folate , b12 and all manner of vitamins

    fix them first and then levo will help

  • I most certainly do feel worse since taking the levothyroxine.

    The symptoms I had are worse but also getting new ones like cold night sweats, moody/irritable, sore gritty eyes and losing sensation in my toes.

    My wife gave me one of my Xmas prezzies early for my cold feet. A pair of man size, sheepskin nan-nan slippers. O_o

    Not complaining though.

    I'm making a list of vit's to buy and luckily I've got some vit C left from having the flu.

  • superdrug is best source of Vit C they often do a 3 for 2 deal

    once you get ferritin etc tested in your shoes I would take iron plus vit c anyway

    as I am sure ferritin will be very very low

    your adrenals could well be part of the problem ( been through all this with my husband )

    at least 2000mg vit C plus Liquorice root tincture (baldwins.co.uk ) will help the adrenals take that with your nightime multi vitamins

  • Forgot to say I felt worse for a few weeks after starting on Levo. Should improve as you increase dose. My doc would not increase this am as I hoped .My ferritin was double the range max. Might of been a throat infection but might be to do with my love of red wine affecting the liver.So I have to severely reduce another pleasure!

    Another good book is Diagnosis and Management of Hypothyroidism by Dr Gordon Skinner who some reckon was driven to an early death by the GMC traditionalists.

You may also like...