Viewing 40 posts - 1 through 40 (of 58 total)
  • Anyone on here with hypothyroidism?
  • jamesgarbett
    Free Member

    I was diagnosed about 10 years ago.

    For years my thyroxine dose was 100mcg but this has crept up and I’m now on 150mcg

    Is there a theoretical limit to the thyroxine dose before different treatments are looked at?

    orangespyderman
    Full Member

    OrangeSpyderMissus does (and has for as long as I’ve known her – not far off 20 yrs now). Not sure about limits, I think as much as anything it dépends how stable it is. OrangeSpyderMissus’ has had dosing changed up and down at various points in time. Life events (pregnancy) has changed it a lot in one go (maybe you’re pregnant 🙂 ), otherwise she doesn’t seem to fret. She changed doctors a few times over the years and I get the feeling that prescribed doses do change a bit from one to the other (some seem to try as little as possible as long as it keeps you in or close to the norm and there are no other ill effects, some seem to try and keep you well in the “norm”.

    I’m sure there’s more science to it all than that (at least I hope there is), and someone will probably be around soon with better advice. On related note, did I ever tell you about my friend in A-level biology who got knocked a point for his diagnosis of hypothyriodism in cats? Just had another little 😆 at that memory – thanks.

    cinnamon_girl
    Full Member

    Some folk take 400mcg of Thyroxine. NHS considers that Thyroxine works for everyone and completely ignores the evidence that says otherwise. Some folk take a combination therapy that includes Thyroxine. I’ve been forced to self medicate.

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    andybrad
    Full Member

    i know someone close to me whos been on 3x that for years.

    However in answer to your question i dont know im afraid.

    cinnamon_girl
    Full Member

    450mcg?? Blimey!

    On a serious note the best thing you can do is to educate yourself. e-mail in profile and happy to answer any q’s.

    cinnamon_girl
    Full Member

    I get the feeling that prescribed doses do change a bit from one to the other (some seem to try as little as possible as long as it keeps you in or close to the norm and there are no other ill effects, some seem to try and keep you well in the “norm”.

    Some folk find they need to slightly increase their dose in the Winter.

    lazybike
    Free Member

    I take 125mcg… had a part of the thyroid removed, I do have regular blood tests to check the dosage.

    FunkyDunc
    Free Member

    On a serious note the best thing you can do is to educate yourself. e-mail in profile and happy to answer any q’s.

    If you have a spare 10 years, if not speak to a doctor.

    keefmac
    Full Member

    yes, found out about 4 years ago (41 now). i’m on 150mcg per day too, up from 125 from just after diagnosis. not sure if there is a limit, have you asked your doc?
    as an added bonus i found out i’m type 1 diabetic last year, so much fun 🙂

    after a quick google i found this:

    An inadequate response to oral daily doses of 300 mcg/day or greater is rare and may indicate poor compliance, malabsorption, and/or drug interactions

    from here:
    linky

    cinnamon_girl
    Full Member

    If you have a spare 10 years, if not speak to a doctor.

    FunkyDunc – I believe GPs only spend half a day on the endocrine system when training.

    Stevet1
    Free Member

    I believe GPs only spend half a day on the endocrine system when training.

    I find that extremely hard to believe.

    cinnamon_girl
    Full Member

    I find that extremely hard to believe.

    Many of us are dissatisfied with NHS care that seems to consist of our thyroid health being dependent on using a test that was never designed as a stand alone test. It’s really not that simple.

    Stoatsbrother
    Free Member

    OP You may not get much medical input on this thread from Drs – There are people on STW who persistently paint GPs in an extremely bad light and seem to have a perpetual grudge, and some even say they think the NHS would rather some people died. This is one of the topics where such people might post.

    150 is not a very high dose. Usually in the UK monitored by your TSH level and keeping that in the lower half of the normal range.

    http://www.british-thyroid-association.org/Guidelines/ is where the current UK expert guidelines can be found and downloaded. Knock yourself out!

    A statement of interest in the guidelines – which might also be applied to other conditions – is “It is acknowledged that a proportion of individuals on L-T4 are not satisfied with therapy and have persistent symptoms despite a normal serum TSH. Such symptoms should be given due consideration and patients should be thoroughly evaluated
    for other potentially modifiable conditions. In some cases, a retrospective review of the original diagnosis of hypothyroidism may be necessary.”

    Patients with relatively mildly raised TSHs are often found to be biochemicaly hypothyroid during the investigation of fatigue and depression, with thyroxine prescribed to a level where TSH becomes normal leading to no improvement… because the patient had fatigue or depression, not symptomatic hypothyroidism. But receiving the physical disease label of hypothyroidism can get in the way of acceptng that the situation might be more complex.

    Said my bit. I’m out.

    Handsomedog
    Free Member

    In support of cinnamon_girl we’ve found it’s very dependent on what doctor you get. Mrs Handsomedog has Hashimotos Hypothyroiditis (somewhat different to regular hypothyroidism but treated in the same way) and it took 5 years and at least 4 different doctors to obtain any kind of diagnosis and that includes several hospital consultants.

    She’s now with a doctor who is more concerned with her symptoms than her ‘normal’ blood levels and is ok with some experimentation of dosage.

    cinnamon_girl
    Full Member

    OP You may not get much medical input on this thread from Drs – There are people on STW who persistently paint GPs in an extremely bad light and seem to have a perpetual grudge, and some even say they think the NHS would rather some people died. This is one of the topics where such people might post.

    Stoatsbrother – assuming some/all of these comments are aimed at me? I’m sorry that you’ve interpreted my comments in that way but I certainly stand by my comment that the NHS would rather some people die. My experience with the NHS has been shocking and I shall be writing a blog in due course.

    Moving on to those guidelines, these were updated last year I believe where it’s now acknowledged that some patients aren’t satisfied with Thyroxine. The NHS places patients in a little box where clinical signs and symptoms are ignored in favour of a one size fits all approach. One of the biggest problems is the guidelines stating that a TSH of 10 is needed before thyroid meds are offered. That is frankly sadistic as many patients, including myself, have been left unable to function and lead a normal life.

    Only basic tests are done due to cost cutting therefore less information for diagnosis. Why leave a patient with a barely working thyroid without meds until such time as it fails completely? Does quality of life not come into this?

    I would draw attention to a Petition that’s currently before the Scottish Parliament, amongst the submissions are those from scientists that are worth reading:

    http://www.parliament.scot/GettingInvolved/Petitions/PE01463

    As an example here’s one from a scientist:

    http://www.parliament.scot/S4_PublicPetitionsCommittee/General%20Documents/PE1463_K_John_E_Midgley_19.02.13.pdf

    Patients are being failed and a UK thyroid forum with 50,000 members would testify to that. Don’t get me started on the regular proferring of anti depressants together with blatant sexism as the overwhelming majority of sufferers are female.

    slimjim78
    Free Member

    So how many symptoms of hypothyroidism do I need to exhibit before asking to be tested?

    I just check the list and think I hit pretty much all of them apart from weight loss(!)
    Extreme senstivity to heat, excessive sweating, palpitations, mood swings, trouble sleeping, lack of energy/weakness.. plus sore ‘glands’ when I press around the underside of my jaw.
    If I have it, can I upgrade to the weight loss version?

    AdamW
    Free Member

    Two of my sisters have hypothyroidism. They saw the doctor, were diagnosed pretty quickly and are now doing well.

    cinnamon_girl
    Full Member
    footflaps
    Full Member

    If you have a spare 10 years, if not speak to a doctor.

    🙂

    CG is to medical issues what TJ is to helmets….

    cinnamon_girl
    Full Member

    CG is to medical issues what TJ is to helmets….

    Hey footflaps, have only been commenting due to personal experience and knowledge gained. 🙂

    mudmonster
    Free Member

    Girlfriend has Hashimotos hypothyroidism. She changed her diet and was able too reduce her dosage to 1/2 of 25mg tablet every 3 days. This is the diet: http://www.mindbodygreen.com/0-3139/13-Ways-to-Treat-Hypothyroidism-Naturally.html
    She has a lot of frustration with doctors not taking her seriously.

    DrP
    Full Member

    Slimjim78…

    Your collection of symptoms include those from both hypo AND hyperthyroidism….

    It’s rather challenging to have a simultaneously over and underactive thyroid tbh.

    DrP

    baldiebenty
    Free Member

    Got to back up CG on this.

    My wifes experience with hypothyroidism and trying to get treatment that would actually make her feel well rather than just surviving has been stressful, sad, upsetting and eye opening.

    She’s had to fight and fight and continue fighting every six months as they insist on periodic reviews with a consultant in order to be allowed a combination therapy with both T4 & T3 medications and I suspect we’re only allowed to keep her on that because we lived abroad for a while and she was on it when we came back. Most doctors seem to have an apoplectic fit at the idea of using T3 (possibly because of the MASSIVE cost to the NHS, although why it costs £100s for the tablets here and a few euros elsewhere in Europe is beyond me).

    Our experience has been that with hypothyroid treatment how you actually feel (lethargy, weight gain, low libido etc.) is all secondary to getting your blood results “in range”. If you feel like crap and your bloods are in range that’s fine, if you feel ok and your bloods are even just towards the top end of the range it’s a full on my hairs on fire panic panic, you’re going to die from a heart attack or your bones will crumble to dust because of osteoporosis.

    jolmes
    Free Member

    Was diagnosed with an over active thyroid in my teenage years, cannot remember the dosage they popped me on but it seems to work and get it under control within a few years. Still have to have blood tests every 6 months to check my levels are stable, its swung either way a few times but not since reoccurred.

    Both my sister, mum and auntie all diagnosed with an under active thyroid. Guess I was lucky…

    slowoldgit
    Free Member

    Now that the initial rush is over, it seems to me to be worth asking if anyone else has comb-over eyebrows.

    FunkyDunc
    Free Member

    Only basic tests are done due to cost cutting therefore less information for diagnosis. Why leave a patient with a barely working thyroid without meds until such time as it fails completely? Does quality of life not come into this?

    In this post and lots of previous ones, you have consistently that doctors have failed you/they are not educated.

    It looks more like the truth is that you unfortunately need tests/treatment that isn’t available on the NHS, which is a very different narrative from where you start.

    It is very unfortunate for those affected, and your insight may be able to point them in the direction of treatment, but don’t bash the NHS doctors who can only work within a system

    dlr
    Full Member

    Given up with my doctor as she clearly has no interest at all and just fobs me off. Been on 150mcg for years, everything is fine apparently despite numerous other symptons/issues. Moving surgery as I have moved house so perhaps the next one will pay more attention. If not I will just have to continue to suffer multiple issues I guess and spend my free time finding a way to stop paying NI

    baldiebenty
    Free Member

    @FunkyDunc : Tests are available, we’ve had a number of instances of tests being requested by the Dr but the lab then refusing to run them and doing only the basic TSH test – which has been at least partly discredited. Who’s treating the patient? The lab or the Doctor?

    My wife’s logic is (put simply) that the thyroid in the body of a normally functioning individual produces both T3 & T4 (besides many other things), for some reason the medical industry believes they can resolve thyroid malfunction with the addition of just T4, the endocrine system is massively more complicated than that!

    Medically everyone in the industry will point at the recorded blood results and say “You’re all fine, look! everything is in range”. Anecdotally it’s a very very different story. Many people are treated quite adequately with just T4. However, if you don’t fit into that pigeonhole where it works for you, good luck it’s a crap shoot.

    slimjim78
    Free Member

    As it happens I have also lost most of my eyebrows over the course of the last year or two. I put it down to them being sympathetic towards my scalp

    cinnamon_girl
    Full Member

    Girlfriend has Hashimotos hypothyroidism. She changed her diet and was able too reduce her dosage to 1/2 of 25mg tablet every 3 days. This is the diet: http://www.mindbodygreen.com/0-3139/13-Ways-to-Treat-Hypothyroidism-Naturally.html
    She has a lot of frustration with doctors not taking her seriously.

    mudmonster – did she have a very high number of antibodies? Don’t understand how half a tablet of Thyroxine (?) every 3 days can work but presumably due to very low antibodies now? I’ve not heard of such a low dosage before so very curious. 🙂

    baldiebenty – excellent posts, you’re spot on so thank you. The NHS only has one supplier of T3, you may have read about this:

    http://www.thetimes.co.uk/article/extortionate-prices-add-260m-to-nhs-drug-bill-8mwtttwdk

    CCG’s are refusing to allow this to be prescribed on cost grounds so patients either have to purchase online from abroad or they switch to Thyroxine and feel worse.

    Another option is NDT which is made from dessicated pig thyroid. This mimics a human thyroid gland and was used from the 1900’s up until Thyroxine was manufactured in the 70’s I think. Many patients successfully use this, again buying from overseas.

    https://www.verywell.com/natural-desiccated-thyroid-drug-treatments-editorial-3233256

    In this post and lots of previous ones, you have consistently that doctors have failed you/they are not educated.

    It looks more like the truth is that you unfortunately need tests/treatment that isn’t available on the NHS, which is a very different narrative from where you start.

    It is very unfortunate for those affected, and your insight may be able to point them in the direction of treatment, but don’t bash the NHS doctors who can only work within a system

    FunkyDunc – yes to your first paragraph. I have found doctors’ knowledge on thyroid matters to be highly variable and, yes, I have been failed. Was left very ill, sleeping 18 hours per day, freezing cold, housebound, unable to talk due to not remembering words, unable to operate an oven or microwave etc etc. Could barely wash myself. I became suicidal, was repeatedly told that I wasn’t hypothyroid.

    The NHS doesn’t test for FT3 nor for thyroglobulin antibodies nor does it routinely test for ferritin, vitamin D, vitamin B12 etc. Apparently the TSH test is the ‘gold standard’ but really all it’s doing is making life easier for the doctor.

    GP’s are free to treat as they see fit following a clinical diagnosis, yes they have guidelines but those are not set in stone. From the General Medical Council Guidelines for Doctors “doctors must treat patients as individuals”.

    I understand that GPs have a challenging job and consider they’ve been treated very badly with regard to consultants being able to dump patients back into General Practice for GPs to treat. In other words consultants with highly specialised skills are having their work load lightened. This is not good news for the patient nor their GP who won’t have this specialised knowledge. This includes thyroid disease plus other conditions which shocked me.

    At the end of the day it’s simplifying a sometimes complex health condition despite thyroid charities repeatedly saying and providing evidence that only using the TSH test and offering Thyroxine is failing patients.

    Hoping the above makes sense.

    Edit: here’s a link to NICE:

    http://cks.nice.org.uk/hypothyroidism#!topicsummary

    mudmonster
    Free Member

    Will ask her when she gets in. Think it’s the diet that has allowed her to reduce the dose.

    slowoldgit
    Free Member

    @ c-g: reading how bad you were, I think you were lucky to escape a diagnosis of CFS/ME. Apropos of which…

    http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/

    … the PACE trial may be heading for a re-think.

    cinnamon_girl
    Full Member

    slowoldgit – thank you for those links and, yes, the second was definitely an easier read! There were several things that stood out such as meeting the required criteria, I don’t understand how these can be ‘measured’ and it doesn’t appear that a thorough medical examination was carried out. Yes, certain conditions were excluded but was comprehensive blood testing for vitamins and minerals done? Or was CRP checked? Etc etc.

    If thyroid testing was done it would have meant that anyone with a TSH of less than 10 could have been included in the trial. There are numerous members of thyroid forums who’ve been diagnosed with CFS, ME, fibromyalgia but had obvious hypothyroid symptoms. Subsequently forced to self medicate resulting in improved health.

    Another point was that the study did not include housebound participants. ‘Results can not be extrapolated to those who are severely affected’. OK.

    Finally amongst organisations involved were the Medical Research Council and on their Board are members with direct financial interests to the pharmaceutical industry including being employed by them. Hmmm.

    Yes, you’re right in that I was lucky to escape that diagnosis. Instead was repeatedly diagnosed with depression that I repeatedly disputed. Eventually I blew their stupid depression diagnosis right out of the water, that’ll learn ’em.

    cinnamon_girl
    Full Member

    Defending PACE trials from yesterday’s Guardian:

    https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research

    Interesting that some requests for data were refused and Freedom of Information requests were needed to access this. Hmmm.

    Have to admit that I struggled with interpretation but do wonder whether an opportunity was missed with regard to blood testing and in depth physical analysis. This is an incredibly complex health condition that surely would have benefited from a more thorough approach.

    slowoldgit
    Free Member

    It’s interesting, to me, that the Grauniad article mentions the blog (not peer reviewed) but not the item it’s based on, two of the authors of which being from Berkeley and Columbia, respectively.

    Superficial
    Free Member

    I feel desperately sorry for GPs who have to deal with crazy expectations and people spouting nonsense.

    Just in defence of GPS (I don’t say that too often as a hospital doctor 😀 ), the following is just completely incorrect. I’m sure a lot of the other stuff posted in this thread is too, but sifting through is depressing.

    The NHS doesn’t test for FT3 nor for thyroglobulin antibodies nor does it routinely test for ferritin, vitamin D, vitamin B12 etc. Apparently the TSH test is the ‘gold standard’ but really all it’s doing is making life easier for the doctor.

    Interested parties may wish to read up on the physiology of thyroid disease, T3/T4 production / conversion before commenting further and appearing dim. I learnt it all in my half day* of endocrine teaching 🙄

    *sarcasm

    baldiebenty
    Free Member

    Sorry Superficial, you’re obviously lucky enough that you don’t have to deal with this crap (or maybe the by-the-numbers approach has worked for you or yours, I’m not denying it works for some) as I’m not sure what nonsense or crazy expectations you’re talking about. Feeling well? perhaps that’s a “crazy” expectation.

    I’ve seen the difference it can make when an attempt is made to help someone feel well. Using a balanced approach where there is an appreciation of all the human variation and nuances involved in the way that the human body works isn’t crazy or nonsense.

    I’ve also conversely seen the shit that can arise when an attempt is made to go by the book and get all those precious numbers within range and sod the effects, that way leads straight to hell, getting anti-depressants chucked at you like smarties. If you’re on T4, you’re TSH numbers are in range but you still feel like warmed over crap then you must be depressed seems to be the accepted approach. It’s an ever downward spiral from there.

    I can tell you as the spouse of a recipient of treatment that the Dr might order a FT3 test but that does not mean it will get run, we’ve experienced this on a number of occasions. It’ll be interesting to see what happens this time around with the consultant as it clearly states on our current form that it’s requesting for TSH, FT3 & FT4 to be run. Normally if TSH comes back within “range”, they won’t bother with FT3 & FT4.

    Also ferritin, Vitamin D and B12 are not routinely performed tests, they’ll only get done on a timetable, regardless of circumstances.

    History of pernicious anemia in the family – check
    Numbers showing steadily descending B12 & D values from the last 3 tests done – check
    Last set of results (6 months ago) showing the numbers barely above the bottom of the allegedly acceptable range – check
    Symptoms present possibly attributable to above – check.
    Request to have re-tests – refused, “we’ll only test every 12 months”

    GPs (and indeed the whole NHS) are over-worked, under resourced and plainly unable to deal with this sort of situation in their proscribed 10 minute consultation. Even if they want to the system then lands on them like a ton of bricks if they try going outside the box to help a patient. Unfortunately because of our crazy system we have to go to them as a first port of call, every time for everything which only serves to add to their work load.

    If I could get from the NHS a reliable source of T3 and pay for it to keep my wife feeling well and stop what will happen if they force her back to just T4 treatment(because of the cost of T3), I would. Fortunately other sources exist but we’re not meant to go anywhere near these online pharmacies are we because they’ll kill us apparently.

    cinnamon_girl
    Full Member

    Superficial – I reckon baldiebenty has been far more eloquent than I could ever be and is spot on.

    Am well versed on the physiology of thyroid disease as that applies to me and around 15% of hypothyroid patients. Whenever GPs have spoken to me about thyroid matters and I explain that I’ve been forced to self-medicate, I take xyz and start to explain the reason why. Without exception I’ve been shut down.

    My bimbo tech skills have failed me with uploading this so shall just give the link. Where do I start???

    http://d1c7lpjmvlh0qr.cloudfront.net/uploads/o/l/l/Hypothyroidism.pdf

    whimbrel
    Free Member

    If it wasn’t for those pesky patients……with their:

    crazy expectations and ……spouting nonsense

    Why don’t they go away and read up on their condition so that they don’t appear dim when talking to me?

    [Hmmmm, if they did that though, I’d then label them as ‘anxious’…….]

    But in the hospital, anxious takes on an entirely new meaning. Rather than a mere descriptor of a patient’s affect it fast becomes the prism through which the whole patient is viewed, and alas, often dismissed. An anxious patient can have a host of visible problems but the term anxious overshadows them all, detracting from better care of the ailments that may well have created the invisible anguish.

    I am speaking about the average patient in hospital who is vulnerable, usually ill-informed, steeped in well-intentioned but fragmented medical care, who sheds a disconsolate tear or looks upset and is quick to be labelled anxious. And before you know it, the label is tossed from doctor to nurse (or the other way around), from one handover to the next, until the occupant of Bed 17 becomes “that anxious man” instead of the human being whose hip is broken, whose pain is mounting, who doesn’t speak English and whose family is out of sight.

    Lesson to patients:
    You can’t win, you can’t draw, but you’ve got to play!!!!

    Some Drs didn’t get the ‘Patient Involvement’ email.

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