Freezing cold AGAIN?!!!

so yet again I have got the freezing cold feeling again and it can't be my house as I live in a house that is always at a good temperature... and my son doesn't feel cold(only me).. I've been like it since last week again. My hands feel really cold and my feet too, and rest of me.plus with it a really cold nose.. alongside this I have humming/rumbling type sound in my ears/head. I first had this over a year ago. It lasted a while but eventually went off. But now and then it would come back again.. well it's returned and really peeing me off. Especially at night time when it's quiet. I've had to put a fan on nearby so I can't hear it.. I'm sat here now freezing cold. My tsh last time was at 5.3 .. I'm taking 125mcg levothyroxine. Haad my bloods done. b12 was at 275.. I really want to know if this sound can be related to thyroid issues?. And I can't understand why I'm having this cold feeling yet again. I was told I'm on the correct levo dose now that I'm 'within range'.. I know that people on here say it needs to be around "1" but when I told the doctor what I heard she said who told u that?.. she seemed to think otherwise. I have posted before .. I am in menopause since age 39 due to total hysterectomy. I'm on hrt patches for that. Wonder if it'd menopause related or thyroid or both?. Or even just tinnitus maybe.. it does worry me at times . I've noticed that when. I'm stressed about stuff and upset that the humming is worse. A long time back id also has trouble with my nose. It became very dry inside and I had redness up inside it and it was peeling up inside too. I'd never had it before was giving cream for it and eventually it went away. But I have had alot of (excuse the info)).. flat scab type looking bogeys I kept needing to blow out of my nose, soom as I did That it would clear my nose alot.. but this ear thing is really getting on my nerves..

Any ideas anyone ?? Thanks.

32 Replies

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  • jojojowilts43 Have you done anything about supplementing to optimise your vitamin and mineral levels as suggested by Greygoose in your previous thread healthunlocked.com/thyroidu...

    As far as your thyroid test results are concerned, in a treated hypo patient the aim is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their ranges and the patient to feel well and symptoms alleviated.

    Your TSH is too high. What about your FT4 and FT3?

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote in a Pulse Online magazine article:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and discuss with your GP.

  • I'm really sorry but I don't understand any of what u are saying.its all alien to me. It annoys me as I'm totally clueless as to what it all means... it's so confusing. I've not had any other tests. Only my TSH. I was told that all that needs to be tested. Now will my doctor let me have the FT3/T4 dome too if I push for it?. Iam seeing as doc I. An hour. What should I ask them to test exactly?.I had folate ferritin and b12 tested. Is there a test which looks at my magnesium???

  • There is but it will always be in range because of the way the body handles magnesium Just take some. You're bound to be deficient.

    I think you need to do a lot of reading! As you have discovered, ou cannot rust your doctors to know what they ar doing when it comes to thyroid. And, there's no point in asking your doctor questions if you don't understand the answers. You need to be able to talk to him on equal ground - which isn't difficult given how little doctors know about thyroid!

    Start by reading on the TUK min page, where everything is laid out in easy to understand terms. That's a good basis.

  • jojojowilts43 What don't you understand?

    To help yourself, you have to read, research, learn all about your condition, decide who to listen to (doctor who knows very little or patients on this forum who know a lot more), understand what your tests results mean then discuss things with your GP to get the right treatment to get you well.

    Not everyone gets the right treatment from their GPs so they help themselves by self testing and self medicating with the help of knowledgeable members on here who have gone through the same thing.

    You've made many posts over the months, I haven't read them all, but you've been given advice and suggestions. Have you followed those suggestions?

    Have you done any reading at all to understand your condition? Have you looked at Thyroid UK's website?

    If you read other members' posts on here you will have noticed that time and time again doctors appear to know very little or nothing about hypothyroidism and seem to believe that as long as your TSH is in range - even at the very top, then you must be well. You will also have noticed that as far as the patient is concerned that is not the case.

    You will also have noticed that many members on here know an awful lot more than doctors about hypothyroidism. Why? Because they are the ones that are suffering and have done the research needed to get well.

    You said in your post above -

    "I know that people on here say it needs to be around "1" but when I told the doctor what I heard she said who told u that?.. she seemed to think otherwise"

    That information was given to you by Clutter in this thread healthunlocked.com/thyroidu... where she linked to Thyroid UK's page on Hypothyroidism>Treatment Options and it quotes what is in my previous reply to you what Dr Toft said ie

    "Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If you don't understand that, it means that Dr Toft is saying you need enough Levo to bring your TSH down to the bottom of the range and your FT4 near the top of it's reference range. He also says some people need TSH to be suppressed (below range) and FT4 over range. He then goes on to say that it's OK to have these levels as long as FT3 stays in range.

    So now you have the information needed to tell your GP that your information came from the NHS Choices recommended source of information (Thyroid UK's website is linked to on NHS Choices website) and the information about a low TSH has come direct from Dr Toft, a leading endocrinologist in the UK.

    You said above -

    "I've not had any other tests. Only my TSH. I was told that all that needs to be tested. Now will my doctor let me have the FT3/T4 dome too if I push for it?."

    Yet a couple of months ago in this thread healthunlocked.com/thyroidu... you said -

    "They also tested something else but can't bloody recall what that would be?. Something like T3/Ft4?? Anyway I thought she said the ft3 result wasn't back but my ft4 is fine.so all is Good she says ..."

    So it would seem that you have had tests other than just TSH done.

    To fully understand what your thyroid is doing these are the tests you need:

    TSH

    FT4

    FT3

    And to see if you have autoimmune thyroid disease you need your antibodies testing:#

    Thyroid Peroxidase (TPO) antibodies - NHS does these

    Thyroglobulin (TG) antibodies - Rarely done on NHS

    If your GP wont do them you can get them done privately with Blue Horizon with a fingerprick test. This one tests all the above homebloodtests.co.uk/epages... and if you want your vitamin and mineral levels tested then go for their Thyroid Plus Eleven.

    Magnesium isn't worth testing, we all need it. If you take Vit D you need to take magnesium.

  • Blood results:

    Vitamin b12 275 ( 180-915)

    Serum folate 7.9 ( 4.0-20)

    Serum ferritin 39 (30-300)

  • What did your doctor suggest re the above results as they all seem very low to me although I am not au fait with blood tests.

    Others will respond with some suggestions how to improve them. B12 should be supplemented with methylcobalam sublingual B12 to bring it above to the highest pont.

  • I got a print out of the results and I was told all ok no action with regards to it. But yes I'm being told my results r on the low side so how come doctors aren't telling me this ?

  • They don't know as they believe if the result is in 'range' everything is o.k. They don't realise we need them (vits and minerals) towards the top of the range.

  • Well if they don't know then who does?. Because I expect doctors to know all this stuff as tthat there profession. How am I going to get any proper help with myself if a doctor can't know what's what ???.

  • Welcome to our world!

    There are two things doctors know nothing about : hormones and nutrition.

    However, we do know. I thought that was why you were here.

  • Nah I'm still pretty new. Here and discovering about it all and asking questions. I don't know who knows what and if anybody I speak to is actually accurate. As u expect doctors to be... so hearing different things is bloody confusing

  • Did I say something to offend then to make u leave that last comment ??

  • Not to offend, no. Just to confuse. It is confusing when people start saying, well, that's what my doctor said, and he should know.

    We do get people on here who ask questions, and when we answer, they say we're wrong because that's not what their doctor said, and one wonders what on earth they're doing asking questions on a forum a forum, if they think their doctor is always right.

    I do realise that it can be hard for people to accept that doctors don't always know what they're talking about - although, god knows, there's enough proof of that if one looks! But, where thyroid is concerned, we have to latch on to that pretty quickly if we want to get well.

    It must be difficult to know who to believe when we're saying one thing and the doctor is saying the other - although I've never had that problem because I stopped trusting doctors when I was five! But, consider this : doctors, in general, spend one afternoon, during their seven years of med school, studying the endocrine system - of which, the thyroid is just a tiny part. After they leave med school, they have no idea how to diagnose thyroid, and therefore they not only believe that it's rather rare, but also that it's no big deal : you take a blood sample, look at te TSH, if it's under 10 the bloody patient s making a fuss about nothing, it's all in their heads, they're attention-seeking hypochondriacs! And, in med school, they learn that all patients are stupid and liars - and women are the worst, of course, and they don't feel pain like men, you know! They're all hysterical nut jobs, trying to find an excuse for packing on the pounds by spending all day lying on the sofa, eating chocolate - why, isn't that what all women do???

    Therefore, treating hypo is a doddle! You just give them a little pill to take every day, and get rid of them quick! And, if they still complain, pack them off to the psychiatrist! It's all in their heads!

    They do not bother to keep up with the latest research, their continued education is met by listening to sales reps - probably over lunch - and it never occurs to them that sales reps are actually trying to sell something! So, their information might be ever so slightly skewed toward the merits of the drugs they're selling. Besides, it isn't in Big Pharma's interests that doctors actually get us well! They make their fortunes through repeat customers...

    We, on the other hand, actually have the disease. And, in an effort to stay well, have done a lot of research - and we actually count actual researchers amongst our members. So, as there are several thousand of us, that adds up to a total of several thousand years of hands on experience, and more thousands of years of reading and researching. So who is likely to know more about thyroid? Us? Or a GP? :)

  • I didn't say that. I actually said that it's confusing because I expect doctors to know all what's needed to know. Ive not at all said that people on here are wrong. Most of us put our trust in doctors... that's why we go isn't it?. But obviously I came on here to talk to other people.. all I'm saying is how do these people know that tsh needed to be at around 1? When doctors say something else. Where does this information come from with regards to the tsh for example?.. I guess as u say u all go by what the majority feel best at and that's where u base Your facts from?..

    I see your point of course about doctors lack of knowledge with the thyroid ... but I wouldn't go for example buying stuff off the internet etc to Medicate.myself just merely going by what someone says.. cz each of us surely are individual... even some on here will leave advice or a link and state that they are NOT a professional or a doctor lol ... I think for me I came on here to talk to those going thru same as me... not to necessarily have loads of jaarrgon that I know zero about. My head is mashed enuf as it is lol.. take this take that etc etc... I think it's ok to say to people well I take this etc etc.. I don't think it'd good to tell people that they need to have take this n that!.. cz whose to say they are correct?.. I appreciate the advice when it comes to which tests I need done but I'm too dubious to take advice when it comes to actual meds I need to have.. I will have to think about if I want to stay on here. All what u just said about doctors...Is that your own personal opinion based on what u have experience,or because of what all say on here??? Where do u get your info from is what I'm asking ?..

  • I've been hypo most of my life, from a small child, it would appear. No-one ever tested my thyroid until was 55. I have Hashi's, and when I was finally tested, my thyroid was on it's last legs. 50 years of presenting typical thyroid symptoms to doctors and being told there was nothing wrong with me, I was stupid, lazy, greedy, I should see a psychiatrist - I was even tricked into seeing one, once. They told me he was a 'pain doctor'!

    Even after I was diagnosed, I quickly realised that the endo I saw knew nothing about how to treat me, and I got worse and worse. I went from doctor to doctor and was fed all sorts of garbage, like a TSH of 9.5 is just fine! We don't want you 'tipping over' into hyper, do we! Even I, at that point, recognised that that was garbage.

    I finally went to a top doc in Paris, who taught me to self-treat, explaining things to me in ways that made sense. I read many may books and articles and lectures - I've read so many that I can no-longer tell you where I read what.

    The last doctor I saw, two years ago, due to an unfortunate set of cicumstances was so ignorant, I wanted to cry. He didn't know what T3 was - he didn't even know what T4 was! But, he was adament that there was no connection between the thyroid and the adrenals! He didn't even know that women have testosterone! He though that iron was the same thing as ferritin and that B12 was irrelevant. And he panicked and wanted to reduce my dose of T3 when my TSH hit 0.45 - not even the bottom of the range.

    I have seen many, many doctors in my time - I'm now 71 - and all of them, without exception, have made me worse than I was before I went to see them. So, yes, what I said is from my own personal experience. Yes.

    However, if you just want to chat with people in the same situation as you, that's fine. But, please do make your intentions clear, because so many of us, when we see someone being badly treated by their doctor, just cannot help ourselves - we have to jump in and advise. We can't help it. It's a compulsion. Because we care. :)

  • Another example ok.. estrogen levels. I've had a hysterectomy and I'm on 50 patch... now u could get some one who had hysterectomy same as me and be on hrt BUT they need more estrogen.. example the 75 patch or even 80 or 100... Some people can feel well on a lower dose. Some need higher. Depends on symptoms ...so with regards to levo... hoe come there r different doses?.. I don't feel too bad and I'm on 125mcg. I think alot of mine is stress and I'm over weight... plus I' went into menopause at 39!.. so I dunno if any things I get wrong r Meno. Thyroid, stress or what!?... BUT if that's the case with estrogen levels then why not thyroid?.. who is to say that it needs to be at 1???.. surely it's down to the individual... that's how I view it... I only came on here with my last post as I was feeling freezing cold again and tinnitus ...I think only 1 person actually addressed what I asked. Instead I get a ton of info that means jaarrgon to me lol ....

  • Well, I'm sorry we try to be so helpful. One of the problems here is that, with new people, we have no idea what you know and what you don't. And, it's true, sometimes people are over-whelmed with information, and have no idea what it's all about. But if you say something like : I'm new to this and I don't understand it all - then people will go more slowly and explain things. But, we're not mind readers.

    If you write question saying: What is TSH, FT4 and FT3, a lot of people will explain carefully in layman's terms. But, if you do that to someone who is well clued up on their disease, they can get offended. Oh and by the way, when I tell stories, I am not talking about you, I'm speaking in general. I wasn't saying that you said we were wrong, I said we do get people on here that say that. Nothing personal! :)

    And, of course, you're perfectly right, one size never fits all. But, in our experience, people rarely feel well with a TSH over one - not once they're on thyroid hormone replacement. But it's the doctors you have to convince of that, not us.

    Feeling cold, tinnitus and gaining weight are all symptoms of low thyroid. So, that would suggest that your TSH is too high for you. But, if you're happy with the way you are. So be it. :)

  • When you look at the numbers of people on this forum, 45,000 +. it's because they aren't getting better following the guidelines. If people are well on levothyroxine they'll be getting on with their lives and not looking on the internet for solutions. :)

    Doctors do not know clinical symptoms whatsoever as they've been told the TSH if 'in range' the patient is fine and is on sufficient levo. Most of us do not believe that at all.

  • These all appear to be low in the range. Are you supplementing?

  • Hi. No I'm not. I wasn't told to by my doctor.i was told results came back as ok no action. But I asked for a print out of my test.

  • Supplementing to bring those levels up may help you to feel better. Most docs will not suggest it if you are in the reference range. But those ranges are very wide and you are very low in the range. Think about it. How can B12 at 180 be OK if B12 at 915 is OK? I'm not suggesting this is the answer to all your problems. Most of us have learned that it takes many steps to feel well. This is just one of them.

  • Yes I understand what you are saying about that. It is a big number range thats for sure. I'm more towards the lower end and I was told it needs to be at least 500 or more ? The b12 I mean ... will the doctors prescribe me something for that if I ask. As I have an appropriate in an hour with tthe doctor.... just thinking what to say about it all. As far there concerned my tsh is withing range now ( top end mind you).. ferritin is at 39 (30-300)

  • I doubt if the doc will prescribe B12 but you can certainly ask. Most of us purchase our vitamins and minerals privately because the docs don't address it.

  • Ask for a prescription of vitamin B12 shots you can get a prescription to give your own shots at the pharmacy the shots work better than any pill

  • B12 is low. Anything under 500 and there's a risk of neurological problems. It needs to be at the top of the range. You can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg daily which you dissolve under the tongue for absorption directly into the bloodstream thereby bypassing the digestive system. After 2-3 months reduce to a maintenance dose of 1000mcg daily. Can be taken without food as it's sublingual.

    When taking B12 we should take a B complex to balance the B Vits. Be sure to get one with methylfolate rather than folic acid. Folic acid is synthetic and needs to be converted by your body to folate.

    Thorne Basic B or Jarrows B Right both contain 400mcg methylfolate which will bring your low folate level up nicely as that is also low and needs to be half way through it's range which is 12 for that range. Take with food.

    B vitamins should be taken in the morning, no later than lunchtime, as they can be stimulating and affect sleep if taken late in the day.

    Your ferritin is also too low, it should be half way through it's range, and an absolute minimum of 70 for thyroid hormone to work. You can get Ferrous Fumerate or Ferrous Sulphate from Amazon, take one tablet twice daily with 1000mg Vit C to aid absorption and help reduce constipation. When you've finished the course retest to see where your level is. Take iron 4 hours away from Levo and other supplements as it will affect absorption.

  • This could have been written by me as I experience very similar issues. I still get the coldness despite taking NDT but I've upped my dose so waiting to see if I get any warmer. Have you had your temperature taken? I've read some hypo folk have a lower body temperature. I too have tinnitus, in my left ear which I think is caused by fluid on the ear drum due to blocked sinuses and eustachian tubes. How are your sinuses? Why don't you start taking NDT from Amazon?

  • Hi, oh really lol. Well I'm odd as not so long ago I was the opposite and kept feeling hot.. but then weather was warmer too. What is NDT and do docs prescribe that.im taking levothyroxine..maybe I need to up my dose then..? Last time had temperature checked it was a little high the doc said ..but I was under alot of stress St the actual time ..when I first had the sounds in my ear I was told something about my ear but can't recall now what he said but he did mention the eustachian tube..and gave me this menthol stuff to put in hot water and inhale it thru nose etc to help unblock them but I'll speak to doc today as I got appo

  • It's common to get hot and cold being hypo as the body loses it's ability to regulate body temperature. I too get hot, especially after eating or drinking a hot drink. There's lots of info about NDT - natural desiccated thyroid on this forum, do a search. It's a more effective treatment for many than Levothyroxine. I use Thyroid-S from Amazon but there's plenty of other brands too. It sounds like your tinnitus could be caused by inner fluid if your doctor gave you menthol to clear your eustachian tubes. Try clearing them again with the menthol. You can also try an Otovent Nasal Balloon to push air through. I also use Euphorbium Sinus Relief Spray.

  • Low body temperature used to be an indication used in diagnosis. Just google "Broda Barnes" and "Basal Body Temperature" (the temperature of the body immediately after waking from several hours of sleep).

    Useful even today in convincing doctors. Verbal description of symptoms may sound vague. This gives numbers!

  • One of the things to think about with regard to nutrients - you gave this result for ferritin and were told it was normal :

    Serum ferritin 39 (30-300)

    Doctors always say that a result is normal if it is within the reference range like yours. But if your result was 100 or 200 or 300 all those results would be within the reference range too. So your doctor would tell you those results were normal too.

    What doctors don't think about is this :

    How well do you feel with a result of 39 or 100 or 200 or 300? They are all "normal" but you won't feel the same with every result.

    In fact, people with thyroid problems need nutritional results to be optimal in order to feel as well as possible and also to allow the body to metabolise thyroid hormones as well as possible. Optimal isn't the same as a result a doctor calls normal.

    In the case of ferritin (iron stores), the optimal level is roughly half way through the reference range or a little bit over. So, with a range of 30 - 300 you would feel best with a result of about 165 - 200 or thereabouts.

    In order to achieve that level you would have to supplement iron. But your doctor wouldn't prescribe it because he thinks your level is normal. So you would have to buy your own iron supplements. You would also need to get regular testing because iron is poisonous in overdose and you need to know when to stop supplementing.

  • Oooh. When you mentioned hearing your heartbeat and tinnitus that rang a bell. This happened to me when I got iron deficiency. My ferritin was very low.

    Do you take t3?

  • Hi.my ferritin is at 39 (30-300) but my doctor says I'm within range ARGHHHHHHH.. no I don't take t3.. I spoke to doc about the tests for thyroid but he said they only test tsh. 😞

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