Confused and cold

Hi all i am newly disgnosed with hypothroidism, been given levothyroixin 50mg. Never had a family history of thyroid problems so just looking for advice really,  last year was suffering bad with palpations but been reading and wondering if its linked to thyroid and not anxiety. And also has anyone noticed losing weight once starting medication. I havent gained anymore weight since being on meds. But docs always say diet an exercise. Which that hasnt changed in the last few years. The only reason i found out about my thyroid was because i was gaining weight weekly and my periods stopped. Although they are regular again now. Doc also mentioned possible infertility. So much to think about and educate myself with. Just want other peoples advice and story tia x

23 Replies

  • Welcome to our forum,

    Yes is the first answer re palpitations and hypothyroidism. Thyroid hormones are necessary to drive our whole system and especially heart as the hormones are reduced so it strives to keep heart pumping. Female problems are also a clinical symptoms as are the other 300 which not one doctor appears to know.

    We have to read and learn if we want to recover.

    50mcg is a starting dose and as we're dealing with hormones it cannot be rushed so there's a blood test every six weeks or thereabouts with an increase of around 25mcg and we feel much better with relief of symptoms.

    When you have a blood test for thyroid hormones, make the appointment at the very earliest and don't eat before it but you can drink water. Your last dose of levothyroxine should be the day before and take it after your test.

    Levo should be taken first thing with one full glass of water on an empty stomach and don't eat for around an hour as food interferes with the uptake. 

    Ask GP to test Vit B12, Vit D, iron, ferritin and folate as we are usually deficient.

    I shall give you a link to an archived site and some links within may not work. Click of female problems and pregnancy.

    Always get a print-out of your blood test results with the ranges for your own records and you can post if you have a query.

    Common symptoms are slow pulse and temps which should come back to normal.

  • Thank you. I have to say i am starting to feel overwhelmed by it all and know absolutley nothing about it other than the few bits that i have read upon. I had my bloods done. Was told that they were back to normal since starting my meds. Told i could struggle to concieve and then sent on my way. I read all these things about vit d ect and feel out my depth with it all. The whole experience is getting me down. If this is all hormone related could this explain why i become so irrational at times either really angry or just an absolute emotional wreck? Also is there any particular foods that can help alongside my medication. Sorry for all the questions. X

  • Ps i am now on yearly blood tests. Can i still ask for levels to be checked? 

  • What! You are newly diagnosed - why would your GP tell you that you only needed a yearly blood test - another one who appears to know nothing about how to treat a hypothyroid patient.

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

    No wonder you are overwhelmed if GP says you don't need an increase and 'see you in a year'.

    I was on thyroid hormones for about 3 or 4 years before I was able to have a yearly blood test. That's when I was 'stable' on a particular dose with no symptoms.

    Many doctors don't treat the patients but the computer print-out.

    If you have any symptoms or don't feel well make an appointment for a thyroid hormone blood test and follow procedure above.

  • All our hormones also have an affect on our behaviour. We females have always had some problems monthly although personally I was never affected very much.

    Some people are diagnosed with mental health problems rather than hypo.

    Just take your time, there's no rush and you can read various posts which might be helpful. It takes time and all increases have to be gradual. It's not a quick fix unfortunately but once on an optimum dose (all symptom gone and you feel well - not stopped increasing due to being in the 'normal' range. We need good T3 and T4 and TSH of 1 or lower. Some doctors keep us 'in range'.

    It is a big learning curve but take things gradually and as long as you're improving that will be fine.

    Your temp and pulse will probably be low, although myself I had bad palpitations but that can also be due to too little thyroid hormones.

    Doctors usually only do TSH and T4. They should also do Free T4 and Free T3 occasionally if patient doesn't feel well. You can also have private ones from recommended labs on (our website).

  • Last year my palps were really bad i struggled to breath with them. But because of learning to drive my doctor put it down to anxiety and gave me beta blockers. I have found this year i do still have palps but they are few and far between an not as intense anymore. Usually a couple of deep breaths and its back under control. 

  • Betablockers interfere with the uptake of thyroid hormones if you were taking any at the time but if palps are bad you have to take them.

    As you are on thyroid hormones now I assume you aren't taking beta-blockers because you can control them?

  • No stopped taking the beta blockers myself some point last year as i was still getting plapations even when on them. I had to also move gp because the last one was rubbish. I do suffer still with tiredness and headaches even worse when i have had a full day at work (im a part time teaching assistan) i am always cold mainly my feet to the point they ache. My partner thinks im crazy cause i forever have the heating on.. i have been tracking my sleep on a app on my phone and even nights where i have had over 8 hours i still wake up tired, feeling incredibly sick and with head aches. It takes me at least till lunchtime to feel normal. 

    So am i able to just ring my gp an request bloods or see the gp first. 

  • Phone the surgery and see what's usual for them. Ask for a blood test for thyroid hormones as you don't feel well.

    Your Doctor might only request TSH and T4. Drop him a note and say you are now a member of HU and because you have symptoms and are suffering you have been recommended to ask for a Full Thyroid Function Test which is TSH, T4, T3, Free T4 and Free T3. Vitamin B12, Vit D, iron, ferritin and folate (If you've not had vits/minerals tested). are an NHS Choices for info on all thyroid hormone dysfunctions.

    They may ask GP to prepare the form.

    Follow the procedure i.e. earliest appointment etc etc.

    The normal dose for hypo patients before levothyroxine was introduced was between 200mcg and 400mcg. Dr Skinner who died two years ago tried to get the Endocrinology to change their guidelines saying that the situation was parlous for patients as their doses were too low or they weren't diagnosed due only to the TSH result.

    Low body temp and low pulse are two of the 300+ clinical symptoms.

  • I have just called surgery they are going to print my blood results out for me and she is getting a doctor to call me back for a chat. So lets see where we go from there. Thank you so much for all the advice it is very much appreciated. My biggest concern is now can my children suffer from this if no one else in the family ever has.. 

  • It can be hereditary unfortunately but your children might not necessaryily develop it.

  • Thank you. Suppose its just something we will have to keep an eye out for x

  • At least you will know the signs/symptoms but hopefully they wont develop it.

  • Hypothyroidism is classed as a serious disease, so serious that any other prescriptions we get for other problems we do not pay for.

    If we don't have sufficient hormones our whole body suffers (metabolism) that's why there's over 300 clinical symptoms. Unfortunateley we seem to be the only ones who are aware of this fact rather than the medical profession.

    When I heard the word hypothyroidism - it was just another word with no meaning. In fact I think it's so with medical people in that they've never experienced what we have and then the struggle to try to recover our health instead of being the symptoms or remaining symptoms being treated as 'not related' to hypo.

    We have to read and learn in order to find our way through the maze.

    Many on this forum have succeeded. We also have members who've got well on levo too which is the only one to be licenced in the UK.

  • I just always feel fobbed off by the doctors. Heres your pills off you go sort of thing. I feel like they think its my own fault. Or that i am lazy ect 

  • The fact that you now more than most doctors in the UK should gee you up. That it has been up to us to forge a way through the guidelines somehow or other to get well, despite the guidelines and woeful knowledge

  • I mentioned that i am on this page to the nurse she didnt look all that pleased when i said i had been told to have my t3 and t4 tested safe to say it wasnt tested. 

  • We have to keep plodding on slowly, slowly, unfortunately. She might have thought her professionalism was being questioned when in fact they have only been told the very basic i.e. T4, TSH. Are they aware of what the purpose of levo is - answer to convert to T3. What is the purpose of T3 (liothyronine) - the answer to get into our billions of receptor cells of which the brain contains the most and when we reach an optimum we have no clinical symptoms and normal health.(as normal as can be with replacement hormones).

  • Will see what docs say momday and go from there. Thank you for all your advice. 

  • I may be stating too much and we just cannot take everything in but seeing you have an appointment:-

    email and ask for a copy of Dr Toft's (ex President of the British Thyroid Association) Pulse online article. Go to question 6 and highlight and give to your GP. (maybe hand it into the surgery before your appointment). Tell your GP you want sufficient thyroid hormones as per Dr Toft's advice. It's a pity the younger Endos appear not to understand that we have to have a low TSH to feel better, as well as optimum T4 and T3 levels i.e. towards the top.

    We have to practically take a degree and don't mind the nurse's attitude. If people are ignorant - well there's nothing we can do to change that.

    Another for your GP and Nurse plus 2nd link for her. 

  • Thank you so much for that information! I have been diagnosed hypo sine Sept 2011. Until end of March 2015 once sorted Ive been fine then everything went pear shaped after a fab holiday to NZ I@ve never fully recovered back to full strength. Started to get better last September then this March without any flights same crash! I take vit d all year round and carefully check test results paying to see endo. Last year my cortisol went very high 693 now back down to 391 but its anew test range 25% lower apparently. My question is has anyone else had a problem like this in March?? seasonal? I did suffer from SAD so I know a strong vit d important.

    But suffering from very low reserves of energy and sometimes I'm at near collapse seems/feels like blood levels  just drain away like someone took out my power supply ??? Help could it be a diabetes thing??? What should i check???

    Advice please!


  • I am starting to question if i had thyroid problems back in 2010 as i was massive. But put it down to ptsd and depression. Since then in 2012 i lost a lot of weight felt healthy ect and then last year i lost my aunt so suddenly and a few other major stress factors happened an now the weight gain again. I weigh 16st an at 5'2 i look an feel rediculous. I think many factors affect us and because of the stress last year my body shut down on me again. Just my theory an i will never know if i am right about having had these problems longer than i have been diagnosed. But it makes sense to me. I also get really depressed in winter months and around my time of the month i become psycotic

  • Hi trixiebucket

    If you copy and paste your question above into a brand new post you will get more responses as this thread is now 8 days old and your question will be 'lost'.

    Also, if you could complete your Profile it gives members an idea of your condition i.e. diagnosis, dose, medication etc.

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