Could my hot flushes actually be low thyroid?

I've had hot flushes throughout the entirety of my menopause; they've never altered. As soon as it gets warm/er in a room, I flush up and get very hot. They can also be triggered by eating fruit or sugar or drinking hot drinks. I also, for obvious reasons, get hot in shops and usually have to strip off scarves and undo coats and sometimes take my coat off. Sometimes I go from the shop floor to the freezer section, get cold, put my coat back on, and then get hot again as soon as I move out of it! It is REALLY annoying. I had my menopause around 48 - 50 (can't remember exactly) and I am now 58, so I've been like this for ten years or more.

The worst aspect of it though is in sleeping, where it has made a terrible impact. I suffer with insomnia anyway, which is aggravated by the drugs I take, but the worst thing is the getting hot in bed which is often made worse by what I call adrenaline attacks. I will fall asleep then suddenly get a shot of adrenaline that wakes me right up - super alert, no matter how tired I've been when I go to bed. I will then lay awake for hours, often till daybreak. My body usually gets very hot, my feet burn and ache as if I've walked for miles and sometimes my legs get twitchy or just restless where I have to keep moving them but don't get any rest from it. Often ALL of me gets restless. The odd thing about it is no matter how much of me I put outside the bedclothes, I can't cool down.

I have told this to doctors, but they just wave it off as menopause and disregard the adrenaline 'shots' as if they are unimportant. One wonders if they were woken every night they would find them quite so unimportant. I now dread going to bed because there is no point. It has reached the point where I go to bed around 5 am and get up at 2 pm. My life is literally upside down.

My question is this, is this 'just' menopause and something that can't be helped, or might my subclinical hypothyroid be playing a part in it? Does anyone recognise any of these symptoms as odd or indicative of something else going on? Any thoughts/insights most gratefully received.

125 Replies

oldestnewest
  • Chancery, B12 deficiency can cause night sweats.

    ncbi.nlm.nih.gov/pubmed/252...

    Menopausal flushes may be helped with folic acid.

    ncbi.nlm.nih.gov/pubmed/252...

  • Thanks, Clutter, but I'm already on B12 injections and they haven't made any impact on that. Likewise, I do supplement folic acid and I haven't noticed any change, so no luck for me there either!

  • Have just looked up low white cell count, can link to autoimmune problems - as well as a whole load of other stuff. I'm sure you've looked it up, but that sounds like a really important symptom which needs further investigation quite urgently.

  • Ooh, have you, Aspmama? If you've found anything concretely linking it to autoimmune I'd be super-grateful for any links, if you can remember where you saw them now.

    I couldn't find anything concrete or useful when I looked. It might come in handy if I have to convince the doc to test me for thyroid antibodies. As I explained in my other post, the dropping white blood cell count is PROBABLY anti-convulsant meds, but it might not be, so it might be a useful piece of information if I can link it to anything that would encourage my doc to take this line of investigation seriously.

    Besides, given his track record of never remembering anything, he'll likely have forgotten that anti-convulsants do this to white blood cells. Maybe I can scare him!

  • just looking... "What are the causes of neutropenia?

    Neutropenia can develop because...:

    Neutrophil production in the bone marrow is reduced.

    This can occur if the patient has an infection, such as tuberculosis, vitamin B12 deficiencies, or folic acid deficiency. Some viral infections can cause neutropenia, including Epstein-Barr virus, cytomegalovirus, HIV, and viral hepatitis....

    more later

  • Patients with lupus, Crohn's disease and rheumatoid arthritis are more likely to develop neutropenia.

  • OK, have looked hard, there seems to be a link with lupus but I can't find one with Hashi's itself. leukopenia and neutropenia are the terms to try.

  • Thanks, Asp. I'd already discovered Leukopenia but I hadn't come across neutropenia, so I'll look into that one, Ta! I find Lupus comes up with my blood test results/symptoms all the time, but I really don't fit the profile. Whatever is going on with me, I don't think it's that.

    Now if I could find a cause for low sodium...

  • On the subject of adrenaline "shots", have you ever investigated your adrenal function? I'm out of my comfort zone when discussing adrenal function, so can't make any sensible comments on it. But if you look at this graph :

    data.integrativepro.com/ima...

    You can see that there is a definite circadian rhythm to cortisol production. (Your personal rhythm can go out of sync with the clock and be abnormal, which really doesn't help matters.) I always used to wake up with a jolt around 3.30am - 4.30am, sweating buckets, and I'm sure it was due to cortisol and/or adrenaline. Perhaps your circadian rhythm has shifted so that you are getting a surge at bedtime.

    Another possibility is that you are oestrogen dominant. Some women find bio-identical progesterone supplements helpful in physiological doses. I've also read that testosterone (in physiological doses) helps some women too. Again, I'm completely out of my comfort zone on this subject, and can't make any sensible comments.

  • Thanks, HB, I'm out of my comfort zone too, when it comes to adrenal function/failure. All I know is the medical profession doesn't believe in it, which makes me not want to go near it. As for my circadian rhythms, I frankly dread to think. Since I am living like a mole currently, I imagine mine is so screwed I'm not sure how I could sort it out. It feels more like taking on another problem rather than a solution to anything!

  • Oh - just noticed your comment about burning feet. Taking T3 fixed that for me. And restless legs were helped with iron and magnesium citrate.

  • What is your ferritin level and your other iron indicators? You are having bursts of Restless Legs Syndrome, which is highly associated with hypo, and iron depletion is common in hypo, as is Small Intestinal Bacterial Overgrowth and of course inflammation and immune alterations. (Weinstock et al, Sleep Medecine reviews, 2011)

    It has been strongly linked with low brain iron (a difficult thing to put right - the brain seems to be the last organ in the body to absorb iron and only takes a tiny quanitity from what we eat. Johns Hopkins RLS clinic takes the ferritin level up to 100 in RLS cases. If there is inflammation then raising iron levels, as opposed to ferritin levels, will be hard.

  • I don't have restless legs any more. Taking iron and magnesium citrate fixed the problem for me. :)

  • Sorry, was really trying to talk to Chancery - put my reply here because this was where RLS had come up - I'm not very good with technology or the conventions of chatrooms and threads.

    V glad to hear yours went with iron though. Do you know what you got your ferritin up to before the RLS went?

  • I don't know to be honest. When last tested it was about 70 - but I'm still taking iron hoping to get it a bit higher. My restless legs improved quite quickly once I started on the iron, but I did need magnesium as well to complete my cure.

    Edit : I wondered if your reply was meant for me or for Chancery. It is horribly easy to misplace a reply on HU, I've done it often.

  • Very interesting. Johns Hopkins gets patients up to serum ferritin 100 if it seems iron is the problem. Very, very interesting about the magnesium. My son's consultant says there is no convincing research on RLS/magnesium deficit, but your experience clearly says that it is an issue for some people. Maybe a small sub-section, maybe that's why it's not coming up in studies.

  • I've no idea, Aspmama, they've never been measured. I'm thinking of asking the doc to do them, since everybody keeps asking me what they are! No doubt they will be 'normal' - I always am. My thyroid levels were the first thing that I ever had show up as - albeit mildly - abnormal. That and my white blood cell count. That's appalling and still falling at last count. But thanks for telling me restless legs are associated with hypo; that's another one I can file away in case I want to ask for treatment.

  • Your white blood cell count is low and falling? And how does your doctor account for that? And have further tests been asked for to find out? Whoah. That happens in a passing way when I have flu - but it recovers quickly. Surely a falling white blood cell count means some big viral or bacterial attack going on somewhere? And if so, it would account for the RLS, because the body will have put brakes on the absorption of iron. If you have an infection or an inflammation the body won't absorb the iron supplements.

  • Sorry, Aspmama, I've panicked you unnecessarily! The meds I take, anti-convulsants, destroy white blood cells. It's one of the reasons I want to get them down as low as possible. This remission that B12 has given me didn't arrive a moment too soon. Of course, we are just assuming that it's the meds that are doing this!

    I know I did have a low white blood cell count BEFORE I developed TN, but I was (very) ill with gallstones at that time so that wasn't so odd. But I don't think there is any inflammation in the body since I was tested for that during a coeliac test and that came back fine. No, the only thing that DOES worry me a little about my white blood cell count is that it COULD be a sign of autoimmune reaction, I would have thought. But I might be wrong there. I have looked on the net to see if I can find any connection to autoimmune with white blood cell count but the only thing I could find was white blood cell anaemia (leukopenia? A name like that.) No, that and an unaccountably low sodium count, which I always have, are the only anomalies I ever have.

    My doctor pays no attention to any of it. I actually had to point out to him that the white blood cell count was falling steadily through every blood test. He hadn't even noticed, which was alarming as it was flagged as low every time!

    I'm afraid having, as yet unofficially diagnosed, subclinical hypothyroidism is the closest thing I've ever got to concrete information!

  • Well, HB, at least that suggests the burning feet issue might be thyroid connected. That's one down anyway, even if I'm not in a position currently to fix it!

  • Think I pointed you towards Adrenals in an earlier post - HPA axis and all that :-) If you have been Hypo for a long time ?? - then it puts a huge strain on your adrenals. Also the Thyroid is our thermostat :-) Time for some medication !

    :-)

  • Hi Marz, I've been watching the videos on the thyroid advocacy site and they have two very weird but very good videos of a 'woman' consulting her 'doctor' (you've probably seen them and know what I am talking about). They are the best explanation I've ever heard to counter the blood count argument but they were also good on adrenal function. The only trouble is they don't reassure me on the ability to get any help for adrenal function from my doctors, since they don't treat for it. I feel VERY nervous about treating adrenals myself, plus I'm still not convinced of the value of it if doctors don't believe in it. I wish I could see some counter arguments from Western medicine to see what their objection is. At the moment everything I'm hearing is lopsided - I need some balance!

    That said, I worry tremendously (oh, the irony) about the stress battering I've given my body over the years and have a fundamental conviction it's probably my biggest problem, so yes, those poor adrenals are probably in a state, but I feel impotent to do anything about it since I don't really know how to measure it, check it or treat it!

  • Here is a link that may help with adrenals...

    stopthethyroidmadness.com

    Adrenals are headed at the top of the page. There are some Home Tests you can carry out to give you some idea of your Adrenal status. Just a guide - if you have issues then you could support them with natural products. Again it is something we have to self treat. Loads of VitC will help too....

  • Many thanks, Marre. I think you recommended this to me before but I actually went and looked this time, so I am now well 'genned up' on how to do it. A bit daunted, but what the hell - here goes nothing!

  • Your doctors are talking nonsense like they did with me because the menopause came and went but the hot flushes did not so they had to admit is was the hypo. I have had some relief switching to NDT but still get them. :-( I understand it is the mitochondria in each cell unable to make the right amount of energy so they vacillate between too much and too little. In theory if you get your medication spot on they should stop. I get about 2 a day now better that 20-40! Good luck in finding a balance

  • That's what I've always thought, TSH. How can it still be the menopause, ten years after the event, when my hormones must be level again, and probably all but dead at that?

    Still, they do say there's no point in treating subclinical hypothyroidism since the sufferer doesn't get much benefit, so maybe it would make no d*mn difference whatsoever!

  • ..that's so they can give you lots of nasties for all the other conditions you present with - that are probably linked to LOW thyroid :-)

    During menopause is a tough time for the thyroid. As our levels of oestrogen and progesterone decrease the thyroid kicks in and works harder in an effort to stimulate the ovaries. The endocrine system is like an electrical system - when one area is down the whole system is affected. It is why HRT came on the scene in my non-medical opinion - as many women at that time of life were struggling - so they came up with a magic pill when they should have been investigating the thyroid and its myriad of activities in the body.

    Looking back I could see that I really struggled post-menopause - but was not diagnosed with Hashimotos until 2005 having retired to Crete in 2004.

    I find it strange that women accept the running down of their ovaries but NOT the running down of the thyroid :-(

    Have you read - The Hormone Solution - by Thierry Hertoghe - or any of his work come to that....

  • No, I haven't. Is it a book? He's a Belgian doctor, isn't he? I saw him mentioned in something else I watched recently. I've watched so many videos they are all a blur.

    Can I also ask - I was thinking of posting a topic on this - have you ever seen any theories as to what triggers Hashimotos? I know it's an antibody issue - but any ideas what's triggering the antibodies?

  • You need to read Izabella Wentz - she is a Pharmacist Doc who has a website - Newsletter - Book. She has Hashimotos and the book is called - Hashimotos - The Root Cause.

    thyroidlifestyle.com

    thyroidrootcause.org

    Yes The Hormone Solution is a book. Thierry Hertoghe is a third generation Endocrinologist from Belgium....

  • God Marz, there are no words to describe how much I love you. Now THAT is a good link - thank you so much. I haven't been tested for antibodies yet - I intend to ask fo rthat when I see the doc in a fortnight's time, but ever since I started reading up on hypothyroidism, Hashimotos just feels right.

    I know that's a bad way to approach anything - coeliac felt right for me, although not as right as this, and I proved negative for coeliac - but this DOES feel right. I went to the link you gave and this is the first thing I read:

    "Often patients with Hashimoto's will have symptoms with acid reflux, nutrient deficiencies, anemia, leaky gut, food allergies and adrenal insufficiency. Symptoms of impaired digestion/absorption, anxiety, chronic fatigue and environmental allergies may be seen as well in Hashimoto's hypothyroidism. "

    That is almost word for word not only a profile of my illnesses, as they occurred but it just seems to encapsulate me in a paragraph. Now I'm all excited because it feels like a breakthrough, which is bloody stupid and asking for trouble because I haven't been tested yet. I shall now try to calm down and read it all thoroughly. Thank you so much again. Sorry, I sound like I'm gushing now but I've been reading so much stuff that didn't quite fit recently that this feels tailor-made. All I need now is for her to mention at least demyelination (it's too much to hope for TN) and I will be a convert! X

  • Chancery - am sure I asked you ages ago about anti-bodies for Hashimotos. It is the most common of thyroid issues and I have it - so it's usually on my mind. Of course your Doc will say it doesn't make any difference - but it DOES ! TN will be connected due to the Hypothyroidism and B12 Deficiency going hand in hand....

    Now get tested ! - then ACTION ! Time to trust !

  • I'm with you there, Marz. I told him at the last meeting we had that I felt all my illnesses were connected and that there was some autoimmune connection going on and he immediately pulled his sceptic's face and hid in the computer. He thinks I'm overcomplicating things. I've explained to him that this is serious for me, because TN is a very serious illness whose degeneration is, allegedly, inevitable and the end results are quite horrific - it's not called 'the suicide disease' for nothing - and that always shames him into quiet for a little bit, but he really doesn't approve of my search for an underlying cause, which is a bit of a cheek considering that without my search I'd still be in pain, doped up and have no idea there was a thyroid problem brewing. That's more than he bothered to do or find out.

    Nope, he can damn well give me the antibody test or I'll want to know the reason why. There patently WAS something wrong with my B12, which means something caused that and my money's on a thyroid problem which I SUSPECT is an autoimmune problem and everything else - the gallstones, the oesophagitis and then the TN - all stem from that. Had I kept going on the NHS route the next thing would have doubtless been dementia or worse, since nothing was being investigated or treated at all.

  • Marz

    I know you live in Crete but where did you get Hashimotos-The Root Cause book? I can't find it in UK. Did you have it shipped from USA?

  • It's on Amazon UK, Gill; I just looked it up. It's under Root Cause - first thing that comes up!

  • Thank you Chancery. I have just bought it.

    Strange my name has reverted back to GILL007. I'm meant to now be Flower007. Lol.

  • I know, I saw that. When I got the notification email you were flower, but here on site you were Gill. I thought maybe you'd gone back to Gill again. If you like I can call you Flowery-Gill and cover all bases...

  • Love it.

  • Yes I buy books from amazon...

  • I can't believe it is good to leave anyone suffering with subclinically hypo after all just because I was overtly hypo they did not aim to just get me back to subclinical but to be fully optimised with no symptoms. It should be the same for everyone. I'd try some NDT and see if it helps Levo was not as effective for me on the fine tuning part. I'd rather have 2 or 3 flushes a day than 20+

  • That's a very good point, TSH. If I decide to pursue treatment, I shall definitely use that as part of my 'compelling argument', should the doc give me any grief. Thanks for that!

  • Low thyroid does cause hot flushes. They are triggered by stimulation of TSH which happens when your thyroid levels are too low. There is a circadian rhythm to hormone levels which may be why you get them at certain times of the night. Yes, menopause causes flushes but they are much worse with low thyroid levels and can disappear once you're adequately treated. Of course, if your hypothyroidism is only 'sub clinical' then that can't be causing it, or else it's not sub clinical. You may be able to find a research paper on TSH production and hot flushes. I know I've read one - try google scholar

  • Yes, I'll try that, Aurealis, thanks. I thought I'd come and see if it was a common problem or not first. I'm just trying to untangle what's a 'real' problem and what might be a hypothyroid symptom that I've just accepted as being part of ageing.

  • We're all different. My GP told me that thyroid could affect everything no limits. Hypothyroidism is known to be mistaken for ageing sometimes. Good luck Chancery.

  • Yes, I've read that, Aurealis. I've been guilty of just accepting health problems I should have questioned. Didn't want to bother the doc for something 'trivial'. Well all that stops here!

  • There is actually something called Restless Leg Syndrome. I had it when I was on prozac, & my brother in law (who is on anti-rejection drugs / immuno-suppressant drugs after a kidney transplant) has had it. You simply CANNOT relax your legs & it's terribly bad at night. My restless legs syndrome stopped when I came off the prozac. I'm on thyroxine for my hypothyroidism. My hot flushes dropped from 15 an hour to 3 a day within a week when I started acupuncture & Chinese herbal medicine. Both the latter support my thyroid and menopause symptoms.

  • Yes, SSRI (serotonin reuptake inhibitor) drugs like Prozac can create RLS symptoms or make existing ones worse.

  • Hi cat! Yeah, I've suffered with RLS for a long time. It comes and goes, but I do get it worst during severe bouts of insomnia. It's almost as if lying down or getting over-hot triggers it! Interesting about the acupuncture; I just need a rich benefactor to pay for it!

  • Short answer, yes - adding thyroid hormone to your medications may very well resolve your heating up issues. From memory, you're not actually on any levo yet, are you - despite your TSH being 5-something and your FT4 at the bottom of the range? In my book that's not sub clinical - you clearly do have clinical symptoms, nothing "sub" about them!

  • God, Jazz, I'd pay money for your memory - would you like to swap? Mine is fried by medication, I'm afraid, not that it was good to start with! But yes, your super-memory is correct, my blood tests results showed I was subclinical hypothyroid. I'm just trying now to disentangle all my various health problems, neglected for years, to see what might be related to being hypothyroid. I'm really trying to establish if there is a genuine problem there or if I really am just an old crone.

    Once I come off medication, or at least get it down as low as I can, I want to know what is 'normal' and what isn't. At the moment, doped up as I am, I can't be sure what damage to cognitive skills, depression, apathy, tiredness etc. is real and what isn't. It makes it REALLY difficult to know if you need treatment or not. When you add in that I was almost certainly B12 deficient before diagnosis that adds a further complication. So, just sounding a few things out, but thanks for your input. It does help a lot to know how those in the know see it from the outside.

  • Oh the restless legs! I had the same when GP was treating me for depression (pre hypo-t diagnosis) and I was on citalopram, another SSRI. My poor husband used to get kicked mercilessly every night! Have now stopped kicking since I weaned off citalopram....it was thyroxine that I needed!

    Yes, I have hot flushes too, for around 6 years. I am 4 years past menopause and they still keep coming. Annoying in the daytime but at night I spend a lot of the night throwing the duvet off and then getting freezing cold and so it goes on. Hot cold hot cold. It drives me bonkers.

    I'm still going through titration of levothyroxine, currently on 75 mcg though doc is prepared to get me down to below 1 on TSH and says that he thinks that I look like a "100-125mcg kind of gal", he's strange like that!

    I agree with what has been said. The alertness during the night points to your adrenals being out of whack.

    It is not right that you should suffer like this. Have you had a blood panel for thyroid function done recently? I would ask for one and ask for the results and the ranges and post them here in case you get the in range/sub clinical reasons again.

    If you go to Thyroid UK website there is a section that outlines how you can do saliva tests for adrenal levels over a 24 hour period, privately, if your GP won't do it.

    You may have to consider changing your doctor to someone more sympathetic and who will do their job....treating YOU!

  • Hello Chancery Sounds terrible - I can identify exactly! I have started on NDT (self medicating with help of this support group and other). I have found most of these symptoms you describe have practically disappeared - especially the night time insomnia, waking up - absolutely exhausting!. Are you being treated for hypo? I'm sure others on here must have experienced similar symptoms - but your description matched how I felt for a good few years - there is light at the end of (a long) tunnel. best wishes Jeannie x

  • Hi Jeannie, no I'm not being treated currently. I'm on too many medications for trigeminal neuralgia and don't want to add any more in till I see how low I can get these (I'm in a period of remission, but don't know how long it will last). At present I'm trying to disentangle various health conditions and see what symptoms, if any, being hypo might be responsible for. Can I ask you, what is NDT? I see it bandied about a lot here but have no clue what it is!

  • Hi Chancery NDT means natural dessicated thyroid x

  • Ah, like Armour? Thanks for that. Now I don't feel so ignorant!

  • Hi, I also suffer these symptoms and have done for years. Am post menopausal also and have been now for around 10 years. The hot flushes and the what you call adrenalin shots are a good way of describing how I wake up at night agitated etc. Let's hope someone on here can advise us. Like you I wonder if it is to do with having an underactive thyroid. I have been on 100 mcgs of Levothyroxine since 2000. Hope someone has some answers 😊

  • Have ben reading your post of a month ago when Clutter suggested some tests for you - did you manage to have them as I am sure they would help you to feel better if they are OPTIMAL. In particular the T3 as you may bot be converting the T4 you have been taking for 14 years - into the ACTIVE thyroid hormone T3. Without that test you only have part of the story.....then you may have some of the answers you are seeking.

    M :-)

  • Oh dear, Dee, that doesn't cheer me up! You're being treated but it hasn't helped? Now I'm thinking it might not be hypothyroidism at all?

  • wow thats high i,m on 50mg before i went on the thryoid i was getting hot flushes and sweating.not sleeping at night i,m getting better at the sleeping thank god.i,m off work at the moment so thats helping too, i also have high iron in my blood and my liver count is up were u checked for all of these,the worst thing here is u have to wait so long to get blood results back

  • westport, 100mcg of levo isn't a high dose at all. Instead, 50mcg is a low dose!

  • ok ya i dont know much about it to be honest i,m getting used of it myself

  • Hi Chancery

    I sympathise so much. I was on HRT for many years and had to stop it suddenly when I got Breast Cancer. The flushes were awful and were made worse by the meds I had to take for the BC. My poor husband said I could power the national grid :)

    I've always been a great believer in supplements and finally discovered sage tablets. It was like a miracle. Recommended it to many friends and family, most of them very sceptical, and all have been amazed at the effect which starts very soon after taking them.

    There are lots of different brands out there but the one marketed by Natures Best (online) is the purest and most effective. The same goes for most of their products and they are quite inexpensive.

    Let me know how you get on x

  • Hah, Miggy! How weird. Believe it or not, sage is one of the VERY few alternative health remedies I've ever tried that actually did seem to work. I took it at the start of my menopause for another symptom and it did seem to actually work, but not enough, so I let it slip. That was some years ago and it might well be worthwhile trying it again.

    I shall look up your recommendation and maybe have a bash at it. You can pat yourself on the back here. I NEVER use alternative remedies. I gave up believing in them long ago (except for black cohosh, is it? That was good too but gave me abnormal liver function tests!) You've seduced me back to the dark side - as my (very mainstream) doctor would say.

  • Sage will not help low thyroid hormones or low sex hormones..sorry..i think that advise is BS!!!

  • No, no, Faith, I wouldn't be taking it for hypothyroidism. It's purely for menopausal hot flushes. If my problem IS hot flushes and not thyroid, then it might help. If it doesn't help then I'd pitch my money on it being more of a hypothyroid problem. Either way, I should at least learn something!

  • whatever helps u is the thing it might not work for everyone

    what is sage

  • Sage is a herb, Westport. Nothing fancy; they put it in sausages and the Christmas goose! But the tablets do have it in higher doses!

  • ok thanks

  • Sage will not help Hypothyroidism!!!!

  • i used to get hot flushes before i went on med for thryoid

  • Well that's reassuring, Westport. Maybe treatment for thyroid would help after all. I think poor Deeseona up above could do with some help from you!

  • I thought I must have written this post in my sleep, Chancery - I think I could write most of it word for word. I did actually write quite a long post, but realised that all I was doing was repeating your descriptions of overheating, pain, insomnia, twitching etc. etc. 

    I actually dismissed many of my original symptoms as being caused by the menopause myself but was, I guess, very “lucky” that my GP at the time did blood tests, and diagnosed Hashimoto’s within a few days. I also had a test (can’t remember what it was, I am assuming it was a blood test) which confirmed that I was bang slap in the middle of the menopause as well. Unfortunately, my GP was one of the “take this little white pill and you’re cured” brigade as far as the Hashimoto’s was concerned, so any symptoms were "probably" the menopause. It has taken lots of battling to fight through the system to get the continuing (or new) symptoms taken seriously and then dealt with though.

    My menopausal hot flushes were different to the overheating I have now, which is exactly as you describe yours, but I don't think my judgement was trusted to be correct.

    My (new) GP has put me on a course of B12 injections, I have recently finished the loading doses; and I am also taking prescribed vitamin D and calcium. I still have all the symptoms though. The overheating and total inability to get to sleep (I feel absolutely “wired”) has never really been addressed as such.

    I guess that my only advice, for what it's worth as am a total amateur at all of this, is to keep plugging away with your doctor. It isn't right that the menopause is blamed for everything. I was fobbed off for a long time.

  • Yes, Beans, the 'wired' is fun. Sometimes I've been on the forums, indulging in a lively debate, or watching a thriller or some such before bed, so you can see the over-alert head, but plenty of other nights I am dead beat, go to bed, fall asleep as soon as my head touches the pillow, then bang, I'm awake like I've heard the front door being kicked in. My skin crawls, my hair stands on end, my legs start jumping like I want to run away from the sabre-toothed tiger that the response is designed to protect me from. I usually get hot just after that and then it's a VERY tricky thing if I'm going to recover enough to fall back into sleep. The weird thing is I never get these adrenaline shots during the day, just in bed.

    If I'm very unlucky my brain will latch onto some present anxiety, like my next fight I expect to have with the doctor, and then it's off and running. I can try everything: calming breaths, clearing my head, trying to think of my happy place, but no, I'm awake and watching the clock ticking.

    Some nights, in desperation, I get up and take sleeping tablets but believe it or not, I can actually lie awake right through them too. In fact sometimes they make it worse because it's like every part of me, from my eyes down, is gritty with sleep, while my brain is doing a jig. I actually get hallucinatory with it. Not good.

    Of course, I have the added ramification of anti-convulsant drugs taken for Trigeminal neuralgia, but believe it or not, they are heavily sedatory. When I first used to take them I fell asleep like a ton of bricks. It didn't last though. I actually LIKED that aspect of them; that's how exhausted I was. But now they seem to make it worse. Of course, I am going through withdrawal at the moment, since I am in a period of remission and thus dropping the drugs slowly. I have perpetual shakes; I look like the poster girl for Parkinson's disease, so possibly that's making it worse too. But I do know I had bad insomnia before my neuralgia struck so it can't be all drugs. And the adrenaline shots have been with me for years now - damn them.

    I think I do need some more blood testing but I'm sure that will go down with my doc like a lead balloon. Maybe with anything we can glean from that and a lowered drug protocol I'll be able to make a better judgment of what needs done. One thing is for sure though, I don't think this is natural - whatever is causing it.

  • It is so hard to convey to someone who has not experienced this "wired" feeling what it actually feels like. I’ve had plenty of well-meant advice about having a warm bath, staying off the computer, reading before bed, using lavender oil – all sorts – to help me sleep, but I already feel tired. I can be practically comatose, but I go to bed and just lie there, palpitations all over the place, with the feeling that someone very big and heavy is hugging me. My brain is working overtime, and no amount of deep relaxation (which I used to be very good at) makes one iota of difference.

    I can tell when my “off” switch suddenly seems to click though, everything calms down and I know that I will drop off to sleep very soon. I’ve usually watched the sun rise by then, and often say “good morning” to my husband as he gets up.

    More recently, I’ve given up fighting and don’t go to bed at a sensible time. I had to give up work after having major spinal neck surgery four years ago, which was very successful, but everything else went to pot and my health has deteriorated ever since. I am “lucky” in that I don’t work now, so don’t have to get up an hour or two after I finally drop off. I try not to sleep in too long in the morning, but would happily do so.

    Good luck with persuading your doctor to do some blood tests, Chancery. I know how soul-destroying that can be.

  • Oh yes, Beans, giving up fighting - I know that one well, but look where it's got me; awake when everyone's asleep and asleep when the world's awake. I've become very antisocial since developing TN so I don't go out socially but on the rare occasions where I have to interact with someone and the insomnia comes up I have to restrain myself from punching them.

    I recently had a visit from a housing assessment officer to see if we qualified for higher priority to move to quieter housing and I described the insomnia to her. She then proceeded to tell me I should try setting the alarm earlier. I gave up at that point since I had already explained that sleep deprivation, even small amounts, triggered migraines, nausea, loss of body control, ataxia, mental confusion and on and on...

    I think people think you are overwrought from doing your to-do list, and if you only had the common sense to write it down you'd be out like a light. If only!

    What a shame about the knock-on effects of your surgery. If only that was a rare occurrence, but I had the same problems myself after gallbladder surgery. Hasn't helped the gallbladder problems much but I HAVE developed problems with my sphincter of oddi, thanks. Ah well...

    Kudos to you for managing to keep to a half-decent timetable; I know how hard this is. I have high hopes of being able to join you if I can just get these meds down. I raise a virtual glass to you - To a good night's sleep!

  • did u get ur thryoid checked because thats the way i was before i went on thryoid meds its got a lot better i still wake up during the night but has improved

  • Yes, it's been checked, Westport. Subclinical hypothyroid, but the doc's yet to sign off on it. I am sure he will be happy that it is quite normal.

  • I don't know if the information in this link might help.

    drrind.com/therapies/metabo...

    Dr. Rind seems to have quite a bit of information on how adrenal and thyroid glands compare. All the best.

    Grammijee

  • Thanks, Grammijee, I'm going to have a good read of that. It looks really interesting. Not sure how accurate it is, but I'm sure it's going to give me some good lines of enquiry, which is more than I've got right now!

  • Sympathies. I don't suffer as badly as you do, but I too seem to have got 'stuck' with hot flashes post-menopause (although, thankfully, I don't experience those adrenaline 'shots' of yours!). I went through mine about 7 years ago. My doctor says that for some women the flashes just don't stop. In bed at night is bad, I so agree. I struggle against insomnia. I sleep under a 4.5 tog quilt with the window half open in the winter and an empty quilt cover and the window as wide as it will go in the summer.

    If I'm not careful my day slips round (being a night owl) too. But I fight against that. I don't think it helps with natural rhythms (circadian?) to turn day into night as we tend towards. And, of course, in winter we never see daylight (which can't be good!). Speaking of which - do you take Vit D3? That might help

    Agree with the other suggestions - interested to see progesterone cream among them, which I'm trying currently.

  • Ah, Humphrey, I'm a 4.5 TOG girl too, and it comes off in summer and I sleep just under the cover or with a single open-weave blanket. I know what you mean with the night owl problem too. I'm a natural night owl, but I've never got as bad as this before. Unfortunately the medication I take stops me tackling the 'getting up earlier' issue because if I am got up before I've had 8 hours sleep I get bad nausea and a migraine - not to mention staggering around like a drunk. Sometimes the ill-effects can last as long as three days, so it's not really an option. However, I'm hopeful that when I get my meds down, as I am doing currently, I may be able to tackle the rising problem and get back to getting up at least before 12pm. At least that would qualify as morning!

    I do take vitamin D, in a multi-vitamin. I was thinking of asking my doc to test my levels, as it's never been tested, but I expect the results would be skewed now since I've been supplementing for a few months.

    I tried progesterone cream, way back when I was first 'going through the change' to try and help with heavy bleeding, but I found it useless and incredibly expensive. So I definitely can't give a good report of that one!

  • please start here.... all Docs are unlikely to test as we're all low (but s/he will be already taking supplements themselves or holidays in Madeira... vitamindtest.org.uk/

    best 25 quid I've ever spent - but it's £28 now....

    this one underlies most others (apart from iron, even B12 won't work without it).....

  • Ah, Sparerib, my doc runs up mountains rather than goes to Madeira. He's the outdoorsy type. He probably has perfect Vitamin D and thinks people who don't are junk food eating wusses.

    I thank you for the link, but wouldn't this just be a waste of my £28, since I've been supplementing? What could it teach me?

  • Hubby and I have lived in Crete since 2004 - and both tested insufficient a few years back. :-( We both have Hashimotos. Do you sit out in the midday sun daily with 50% of your body exposed ? - if not then you will be deficient/insufficient :-) Having the test would NOT be a waste of money - it would merely tell you where you are in the range and then you would know what dose to take. Contained within a multi-vit will not be sufficient. I take 10,000IU's daily as I have Crohns too.

    grassrootshealth.net

    The above link takes you to a chart that indicates the dose required based on the blood test. If your reference range is not the same then divide your result by 2.5 to get it to ng/ml from nmol....

    On this website there is also a chart showing you various chronic illnesses - and at what level you will be susceptible and at what level you will reduce your risks.

    vitamindcouncil.org

    Click onto Health Conditions at the top of the page in the above link and be amazed !

    exeter.ac.uk/news/featuredn...

  • Do I sit out in the midday sun, Marre? I don't SEE the midday sun; I'm still in bed. My life is the equivalent of a cave-dweller. I fully expect to lose the use of my eyes eventually and develop bat radar instead.

    So it would be worth asking to have Vit D measured then? I'm sure the doc will love that. Ah well, he'll just have to live with it or say no, which I'm sure he will, sooner or later, then I'm on my own. I'm running up tests like nobody's business at the moment. I think I'm going to have to spread them on a most important first basis, otherwise the poor man will have apoplexy.

    Thanks for all the Vit D links; I'll get reading there too. I need longer days.

  • A few years ago a letter was sent out by the CMO - Chief Medical Officer of Health - to ALL health Practitioners - about VitD Testing - so your GP SHOULD be aware !! If not then you should point it out to him - copy below !

    gov.uk/government/uploads/s...

    It should include all people - but doubt if he knows anything about it....

  • Thanks for that, Marz - anything official is good; he goes on point for official documents - I think they make him feel more comfortable.

    I'm taking 10ug currently, which seems to be what they recommend for adults, so I should be okay, but I'll be curious to see what my test results are, if I can convince him to give me one. As this is in tablet form, then there might be a malabsorption issue, just like there is with B12 tablets, although I don't know how much D resembles B12 in its assimilation into the cells.

  • You can buy D3 sprays with K2 to go under the tongue so it is absorbed before it hits the stomach ! Same with B12 - which even though you are having injections is good to top up with tabs ...

  • Yeah, I was using sublingual B12 before I got injections. I didn't know D came that way too. Good to know if he refuses a test or my results are too low; I can swap over if needs be. Thanks!

  • Mine were low Thyroid and/or Hashimotos..it, for some, is like being ill all of the time.

  • Good to know, Faith. At least that means if I choose to treat the hypothyroid I might see an improvement of symptoms.

  • A very good question Chancery which seems to have struck a chord with many of us. Maybe I'm lucky in that I get my husband to do the restless leg bit for me! But so long as he takes his magnesium supplements in the evening, and uses a magnesium spray before getting into bed, we have a calm night.

    I'm usually freezing when I get into bed (a fairly normal state in day time too) but then overheat very quickly. When I can't get to sleep because I'm 'wired' I usually get bored and go downstairs until I get really cold again - often two or three hours later, then I get back into bed and fall straight to sleep. Weird! And very inconvenient when it means I then sleep half the morning. Though sometimes I just feel better with less sleep. Impossible to work out but think I'll have a go with the sage while waiting for someone else to come up with the answer.

    I'll put a separate post up in a day or two but wonder if any of you sleepless souls have tried a magnetic mattress? We have one on a week's trial at present, I'll report back later but so far we do both seem to be a little cooler. Though that could be the magnetic duvet we've got with it.

  • Ooh, a magnetic mattress - I like the sound of that, Dina! Is that one of these ones that's supposed to wick heat away from your body? I've seen those kinds of things advertised in Saga Magazine (how tragically old do I sound right now? I only read it in the library, honest.)

    I know what you mean about the cold to hot thing too. Apparently your core temperature has to drop in order for you to sleep. That's all fine and dandy, and I'm careful not to have heating on for about three hours before I go to bed. My feet are usually like chunks of ice, so you'd think sleeping would be a doddle for me. Not so. As soon as I heat up I just keep going, hotter and hotter, until my feet have gone from frozen to burning. It's like when you get frostbitten toes and come indoors and put them in front of a fire. They go from icy numb to red and painfully hot!

    But please do tell us about your adventures with the magnetic mattress (Dina and the Magnetic Mattress - it would make a great children's book!) I'm definitely curious about that one.

  • Ah, didn't realise you could get Saga in the library Chancery, I might have to take a look!

    It's a Nikken mattress pad which looks as though it must be very uncomfortable with big cone shaped foam lumps (I might need help with writing the children's book!) but it's actually perfectly comfortable and I think the idea is that it wicks away the heat, and the magnets do all sorts of amazing things, including sorting out a lot of joint pain.

    But they are horrendously expensive and Dr Mercola says they cause cancer! There are cheaper ones on the market which are obviously different, don't suppose you can remember anything about the Saga article? Shame you don't subscribe, you could find it again!!

    The duvet is sposed to be made of something special as well as being full of magnets. We only have a week's trial and I want to try both separately 'cos one or other, is definitely keeping the heat down a bit.

    You do need to find a solution Chancery, burning feet sound really painful. Amazingly my hands and feet are fine these days, they used to be freezing but now it's just the rest of me. Interesting what you say about your core temperature as I do sleep ok if I get to sleep very quickly after getting into bed ie before my temperature goes up. But it doesn't keep my very hot husband awake. And why do I only heat up like that at night, I'd love a bit of that heat during the day!

  • Well, Dina, I think Dr Mercola has a cheek to make any wild claims about a magnetic mattress since a lot of his own claims sound fairly bonkers. And what's not to love about a magnetic mattress, and duvet for that matter? Now I can only see a picture of poor you trapped in bed because your two magnets have sucked up to each other an you're stuck in the middle like the filling in a pop tart!

    But, yeah, I've seen a few products that promise a cooler sleeping experience. Only today, in Morrisons, putting off going back out into the snow and bitter cold, I was browsing pillows (you've inspired me) and saw ones with a 'cooling core'. That was just big air holes though, nothing as exciting as magnets! Obviously more of us are overheating that we realise.

    And I know what you mean about the icy feet problem. Believe it or not, until I came on here I hadn't realised how abnormal my cold responses were. I was all smug, thinking 'Well, I'm not that hypo anyway' and then I realised I DO have icy feet every night and feel the cold terribly when I go out. I wear twice as many clothes as my partner and still feel it, and always thought it must be my meds, that I couldn't cope with walks in the cold or wet. It genuinely never occurred to me that that might be a symptom of a health problem. I think it has snuck up on me so slowly over so many years I have just adapted to it. Obviously not a good idea!

  • Where on earth are you Chancery, in the snow?? Maybe moving south would cure your cold feet!

    And what's not to love about the magnetic mattress is the price. Glad to see your horrible ailments don't dampen your wonderfully creative humour!

  • I am in Bonnie Edinburgh, Dina, and it's as cold as a monkey's nuts right now. I see we're not alone though; there were stories on Yahoo tonight about all the hurricanes and storms in Central Europe. We've lost the snow, but we've still got the bitter cold wind though. Doesn't stop me overheating like a mobile furnace in bed though. And not in a good way...

  • The only way to find out what is thyroid and what is not, is to treat the thyroid and see what's left. In my opinion, nothing will be left.

    But you have to treat it correctly, and most gps and endos are incapable of that because they stick to T4 only and the TSH. It's not good enough just to be in range with the thyroid hormones, they have to be in the correct place in the range. And it's not good enough to just take thyroid hormone, you have to take enough thyroid hormone. You also have to take the right type of thyroid hormone, the one that suits you, be it Levo, T3 or NDT. I've never met one single doctor that knew all that!

    It's possible that when taking T4 only, you won't be able to convert correctly, which will leave you hypo with all your symptoms. Worse! Your T4 could pool in the blood, convert to rT3 and make you even worse than you were before treatment. In which case you need T4 plus T3 or NDt. However, T4 might not suit you at all, it doesn't suit everybody, so, if it doesn't then you need to be on T3 only. But doctors Don't believe that T3 helps.

    And, as you said, they Don't know anything about adrenal fatigue. But just because they Don't believe in it, doesn't mean it doesn't exist! There was a time that the leading scientifics believed the world was flat. They were wrong. Doctors are wrong in believing that adrenal fatigue doesn't exist. But believe me, treating it makes a world of difference!

    Doctors Don't believe that vits and mins count, either. But they're wrong on that, too. They are so wrong about so many things that the only reason I ever see one is to sign a prescription, and even that I can now do myself. You need your vits and mins tested and deficiencies supplemented, otherwise you won't be able to use any thyroid hormone you might one day take.

    The method for sorting out your circadian rythme is simple - but difficult to do. You just stick to a timetable, that's all : Go to bed at the same time every day, get up at the same time, eat at the same time, and if you have a nap, do it at the same time everyday. Take your tablets - supplements or hormone - at the same time every day, whatever that time might be. Can be difficult to stick to, but Worth it.

    So, you have all the solutions at your finger tips, up to you whether you do anything about it.

    Hugs, Grey

  • Oooooh, it's soooo complicated Grey. How can you tell when it's adrenal and when it's thyroid??? I've only ever had NDT, is it possible Levo would work better for me?

    And please can you remind me how long to wait before increasing the dose of NDT? I had to come off it last year after a stressful time and take adrenal reset, and I'm slowly building up my NDT again - but my Kinesiologist who has been brilliant with it all is away for a couple of months now. I'm still a couple of pounds overweight, which is no big deal for someone as small as me but I think it's a(nother) clue that I need to increase my medication sooner rather than later, I'm currently taking 2.5 grains NatureThroid.

    I didn't realise you had to eat and do everything else at the same time every day to reset your sleep cycle. It's already unthinkable to get up at 7am if I only get to sleep at 6am! But summer's coming so I'll be giving all that a try if the magnetic mattress doesn't sort me out.

  • Certain symptoms are more likely to be adrenal than thyroid. Do you jump out of your skin when the telephone rings - even if you're expecting it to ring?!? That's adrenal. Being shakey and having fat round the middle are more likely to be adrenal than thyroid. Taking T4 and having a high level with a very low T3, you're not converting, likely to be adrenal. But the best way to know is to get tested.

    As for increasing your NDT, now that you are at 2.5, you need to go slowly. It will take 6 weeks after the increase for the T4 to become active T3. If you increase much before that, you risk missing your sweet spot and becoming over-dosed. Then you have to start going down again. Which is a pain. Much better to take it very slowly, like the tortoise, and win the race. And no, I Don't think being a couple of lbs over-weight is a sign that you need to increase quickly - it will take time for the weight to come off, too. You didn't put it on over-night, did you? But you Don't say how long you've been on 2.5.

  • Oh gosh, I had no idea that jumping out of my skin was related to anything, I thought it was just "sensitive me", duh!! It doesn't have to be anything as dramatic as the phone ringing, just my husband dropping a knife onto a plate does it. Sometimes. Other times I don't bat an eyelid.

    I'm rarely shakey now I have my blood sugar under control and my recent blood tests were pretty good so I assume I'm converting ok.

    I only increased from 2.25 to 2.5 three weeks ago so thanks so much for reminding me it's six weeks (I assume brain fog is thyroid rather than adrenal?).

    The weight actually did go on more or less overnight when I stopped the NDT. And a couple of pounds went when I went back on the NDT. The rest is not an issue (apart from not being able to get into my favourite skirt) but I thought it might be a sign I need to increase the dose. I'm not worried about doing it quickly I just needed to know the time frame so thank you so much Grey.

    I'll come and visit you when I get this sorted out: my dream is to cycle from the north to the south of France! Mainly because I don't go north (see above re cold!!) so won't do the usual Land's End to John O'Groats!

  • There's an awful lot of mountains in France! lol

  • Hi Greygoose. Because I'm currently on (very strong) anti-convulsant meds I'm not keen to mess about with thyroid meds. One, because it's too many meds and two, because I won't really know what's working and what isn't. I don't actually know what the low thyroid functioning is doing to me because I am too doped up. The only things I can be sure of currently are the symptoms I had before my trigeminal neuralgia started, like ridged, splintery nails, chronically dry skin, chronic constipation, depression and apathy. Unfortunately my meds affect things like depression and apathy too, so I wouldn't even be able to guess on that one either.

    I want to get my current meds down as far as I can before I even think about adding thyroid meds in. Plus there's always the slim possibility that the meds are impacting the thyroid, although I'm not entirely convinced on that one. I think I've probably been having thyroid problems for about ten to fifteen years - I just didn't realise it and was reassured by a thyroid test some years ago that the doc told me was 'normal'. I suspect it wasn't.

    Either way, I want to get more information, learn what's 'real' and what isn't. And this forum has been great for sorting that out. For example I had read many times that low thyroid sufferers felt the cold more and I thought, 'Well, that's not me', till I slowly realised I always have feet like chunks of ice in the evening. In the winter I wear a vest and knee-high socks and wrap up like a gorilla and STILL suffer as if the wind is going right through me when my partner can just sail through it as if it doesn't affect him. It's been going on so long I just didn't realise it was 'off'.

    Unfortunately with regards to sorting out the circadian rhythm, it's not "simple". Very far from it, or I would have done it by now. My medications don't take to loss of sleep - an irony, I know, but true. Subsequently if I am done out of even a half hour's sleep I know it. In practice this means I get nausea, migraines, drunken gait (ataxia) and mental confusion that would shame an Alzheimer's patient. Depending on how much early I've been dragged out of bed, the ill-effects can last up to three days. Once, when I was obliged to attend a Friday morning doctor's appointment, I lost an entire Saturday. I had no memory of it at all the Sunday after. Zero.

    I'm afraid fixing that problem is going to have to wait until I can get the meds low enough to tolerate sleep disruption. Until then I am stuck with being like a bat in my cave.

  • But nobody's talking about sleep disruption, just sleeping at the same time every day, be that 10 pm to 10 am, or 7 pm to 12 pm! Whatever just so as you do it the same time every day. And I said the method was simple, I didn't say it was easy to do.

    So, what meds are you on exactly? Have you researched them and their effect on thyroid? Did you get a copy of the thyroid tests you had that your doctor said was 'fine' - given that doctors have no idea what's fine and what isn't? Can't you just get another thyroid test - given that you Don't know what is causing what symptom, and that thyroid could be causing them all - or, on the other hand, some people Don't even have any symptoms at all?

  • Hi Greygoose. I'm afraid even same time every day would be a problem for me - that's the problem! because of insomnia, which doesn't keep to convenient hours, I can be very late getting to sleep, often daybreak, then sleep poorly. Where the meds come in is that I HAVE to have 8 - 9 hours sleep or I have all the problems I've already detailed. Because of this, I can't mess about with the 8 - 9 hours sleep, which means, in practice, that I have to adjust my hours to allow for it. Subsequently, I am effectively getting to bed later and later and getting up later and later. It's like a horrible, long, slow, unstoppable landslide.

    I'm on anti-convulsants (Carbamazepine and Gabapentin). The only relationship I've been able to find between them and thyroid is that they may produce "dysfunctional thyroid test results". Whether they actually interfere with thyroid or not, I do not know. Certainly it's not listed in the novel-length side effects on the leaflet, but hey, these drugs kill white blood cells, so who knows? They MAY be responsible for my poor test results but I suspect they are not.

    No, I never saw the first thyroid test I had done. It was several years ago, in a different city, so I'd probably have to pay to get it, if I could. I've had the test retaken, very recently and that's when my results showed subclinical hypothyroid, although my doc has yet to put his blessing on that diagnosis. That's just how Vanderpump categorises it (High TSH of 5.2 and lowish T4 of 10 [bottom range 9]). The doc who saw it thought it was slightly dodgy but said they wouldn't normally treat it, so I am expecting much the same from my doc. I'm going to ask for antibody tests, in case it's Hashimotos, which is a bit of a different animal, in my book, and which I would rethink treating.

  • Well, yes, it is a different 'animal'. Also ask for an FT3, because that is the one that counts. The other two are just bit-part players.

    But have you never considered that your problems are caused by low thyroid, rather than the medication causing low thyroid? A TSH of 5.2 and an FT4 at the bottom of the range is not subclinical hypo, I Don't care what Vanderpump says! See how he'd like a TSH of 5.2! You are clearly hypo. End of!

  • Oh yes, Greygoose, I think it probably is genuine. If the meds have played any part they have perhaps pushed the thyroid to look more obviously 'ill'. Then again, maybe not. Maybe they've toned it down and it's actually worse than it looks. The website only said the meds produced "dysfunctional test results" - it didn't say which way!

    Can you tell me how I would convince my doc to test for T3? When I asked about getting the full tests the first time, he just cut me off by saying the NHS didn't "usually test for those" in a way that meant 'don't push me because I've had enough of you today'.

    Now that I have this poor functioning result to back up further testing, on what grounds can I justify asking for a T3 test, and what would it teach us? He would want to know why we should do it. In fairness, because he has to justify it to the lab.

  • What would it teach us??? Everything! It's the hormone you need to live. You can live with TSH, you can live without T4, but you cannot live without T3. So, the lower it goes, the sicker you get. It's not the TSH that makes you ill.

    It would also tell you if you are converting corrrectly by comparing it with the FT4. But the stupid man should know you are hypo just by looking at that TSH!

    I Don't know how you can convince him. I haven't had anything to do with English doctors for years - except my mother's doctor in 1999. I had to threaten to smash his face in to get him to come and see her when she was dying! With French doctors, I've just said I want my T3 and I get my T3. But I Don't think it works like that in England.

  • So we'd be looking for a low result; that's good to know. All I need now is a compelling reason why. Thanks!

  • Well, I would have thought the reasons above were compelling enough. I Don't know what else you hope to find.

  • No, Greygoose, I'm not looking for anything else, I just need a way to present it as an argument. Saying to him that the lower my T3 is the sicker I am doesn't really give him a reason to test it. The NHS doesn't routinely test for T3, so with these blood test results, which his surgery also wouldn't routinely treat, he has no 'need' to test me further. I have to give him something concrete, not just 'I'll be sicker if I have low T3', since he doesn't really think I'm sick in the first place! It needs to be giving him more information, not just proof of a sickness he doesn't uphold to start with.

  • Well, then you know your doctor. So I can't possibly help you any further with someone as ignorant as that.

    You could post a new question asking for people's ideas, or, you could just wait until it gets worse and he is obliged to recognise your illness.

    Sorry. I Don't know what else to say.

  • Thanks, Greygoose, I appreciate your help.

  • OK - so try this - TSH is a hormone secreted by the Pituitary Gland and tells the Thyroid to produce T4 - which is a storage hormone and does diddly squat in the body - it just hangs around. It then converts in the liver and kidneys and elsewhere into the ACTIVE thyroid hormone T3 - this is needed in almost every cell of the body so VERY important. Having the T4 result tells you only what the thyroid is producing and not HOW IT IS CONVERTING into the vital hormone that keeps us going. ( simplistic explanation for Doc who knows so little ! )

    You do not have to produce an argument for your GP - just be politely firm and tell him what is needed for you to regain your health and get you off those drugs.

    Don't forget the anti-bodies must be tested too....

    If he comes on with the NHS do not test - then that is not true - in some cases they do. Ask him to put a note on the blood test request....or you could offer to pay for that one test in addition to the others - that should floor him.

    Methinks he/she doth protest too much.....Not getting to the bottom of thyroid problems keeps BIG PHARMA lining their pockets as GP's prescribe all these other expensive pills and potions whilst neglecting the underlying cause. Of course not much money to be made - so let's keep them ill and needing other harmful drugs.

    Time for ACTION !

  • Thanks Marz, I think I'm following that. To recap, basically the high TSH shows that my body is struggling to produce enough hormone. The low T4 shows that there's not a lot of that around to be converted, so if we measure the T3 we will get a more accurate picture of just how bad things are, since it's the T3 that counts. Is that about it? In other words, it's going to give us a more pinpointed picture of the actual problem? Or at least the extent of the problem?

    I'm asking for all the antibody tests because, as you know, I feel this is an autoimmune thing, but I would like T3 measured too because I would like that extra info. Plus I'd like Ferritin and vit D measured because I want to see if any other nutrients have been diminished. I think I have quite bad malabsorption issues because I have the acid reflux, plus I have very poor gut motility and some poop issues (grey sometimes, just can't work out what my gut is not digesting; suspect it's vegetable matter, not fat as I first thought) plus of course the legendary constipation problem. I do also have yellow skin, which I discovered yesterday from Isabella Wentz, is a failure to process beta carotene - at last an explanation! So I do have some strategy together; just want to get a sound scientific argument for everything so he can't wriggle out!

  • Remember medicine was once and still should be an ART as well as science.

  • I shall be sure to tell the doc that when I see him. I'm sure he'll thank me. He is/was a novelist, of course. Does that count?

  • Chancery - about medicine being an art ! - I mentioned that - in respect of you writing on a regular basis that you need science to support your need for certain tests :-) Good Luck - will look out for your results - with ranges of course !

    You don't have to tell him anything - you just want some correct testing....Has anyone mentioned the book by Dr Toft - a book for under a fiver - written on behalf of the BMA - Understanding Thyroid. A fellow Doc so he will have to listen.

  • I know, Marz. I was just amused at the idea of trying 'medicine is an art' on my doctor. As I think I've mentioned to you before, he needs evidence of everything. Being able to whip out a substantiated answer is the best way to shut him up and get him on board. I find the forums are the single best place for substantiated arguments, mostly because nearly everybody on them has had to do them themselves, convincing their doctor!

    Thanks for the Toft recommendation. I've had him recommended to me before; can't remember who by. I've got some thyroid books coming from the library, and I'm using Vanderpump at the moment, but he's a bit classic, by the book, he doesn't fill you in all the little details that might help you understand some of the more weird things.

    I've found that illness is unique - no two people seem to experience it the same way, and in the case of someone like me, I've come at it from a really strange place, trigeminal neuralgia, so I have to work harder to make myself believable to doctors. Despite this unique quality of illness, doctors don't seem to be very accepting of the fact that bodies do things in odd ways sometimes. God knows why, because they must see that in action every day.

  • Well, I think that's just about what I said, isn't it? Thank you for translating, Marz!

    Unfortunately, today, doctors are neither artists nor scientist - Don't know what they are really. I think 'technicians' would just about sum it up - look at the numbers, then find the correstponding drug to take. Hey! I could do that! lol

  • Faith - you're right that sage does not treat hypothyroidism but it is possible to have menopausal flushes while you're hypothyroid and it's interesting, too, that low oestrogen levels can cause or contribute to hypothyroidism. If Chancery takes sage for a few weeks, she'll know whether or not they're menopausal / low oestrogen. If they have no effect, it's one thing to eliminate.

  • I thought of this thread earlier, and knew that I would have to post again …

    I was in town this morning, it was very cold, and even I had a jumper on. I saw a man, probably in his late 40s, wearing summery-type clothes, and he had bare arms. It suddenly dawned on me that there is at least one advantage to being a man – I cannot imagine that he would visit his GP to complain about overheating, and be patronised and told that it was “his age” and to get over it!

  • I'm going to get a load from my allotment perhaps sage tea would also work but suspect it might be a bit powerful on the palete. I knew it was used to clean teeth in the olden days by rubbing a leaf over them! It is very effective too and probably no fluoride hiding in it either

  • I had sage tea, TSH, but had to give up on it as it was like drinking sausages! I'm at a big disadvantage with sage because I hate the stuff, but if you're someone who likes tucking into sage and onion stuffing and Lincolnshire sausages and the like, you'll probably love it. Me, I'll stick to the tablets!

  • Hi Chancery,You have had some excellent advice regarding thyroid and adrenals from members.Some on here will knoe I have very severe restless legs syndrome so I have lots of knowledge on that part of your problem.Just so you are aware Healthunlocked has a restless legs forum too.Should you need any in depth advice , support etc I am on there daily.

  • Hi Pippins. No, I didn't know there was a RLS forum on here – thanks for letting me know. I haven't had as much bother with it recently, but, ironically, I had a touch of it last thing last night. I always feel it is related to something I'm eating but I haven't ever been able to work out what exactly. I know it has some relation to junk food, because when I've gone on binges in the past I used to get it more then, but after that I am running out of ideas. White flour is another possible culprit, but I can't be sure.

    I never really researched it much after I discovered that good ole' Western medicine can't do much for it – as usual – but I shall check out the forum. Thanks again!

You may also like...