More a commentary on the forum than a blog..

As someone who is hyperthyroid I wonder if people would welcome, if it were possible, to have a separate subsection for people suffering from hyperthyroidism. I have already found information that is useful or interesting to me here, but it sometimes feels that this is really a forum for people with hypothyroidism (although I know there is a lot of commonality in our experiences). I haven't posted much, but have found a couple of times that people respond as though I were hypo even if I have said I'm hyper and I find this excluding and depressing, although I understand how easily its done as it seems most people using the forum are hypo. I wonder if there are other people with hyperthyroidism who have come here for support and given up as, so far, I have not come across any posts directly relating to this state (although I haven't searched for them, just noticing the ones that come up currently). If that is the case, would there be any value to setting up a subsection specifically for people suffering from hyperthyroidism? My apologies if this comes across as a whinge, I do think this is a really valuable resource either way.

41 Replies

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  • Hi Sam

    There is an update to the site, coming very soon, one part of which will be the ability to sort the posts into groups depending on subject.

    This is a reasonably new website, it was a new concept for online communities at the time. We were the first group, and neither ourselves, nor HealthUnlocked had any experience of this type of thing when we started!

    What I am trying to say, is that HealthUnlocked are still finding their way and changes are happening, little by little, to change and improve the way that the site works.

    Please bear with us and bear with our people, don't forget a major symptom of being HYPO is being a bit foggy-headed...! ;-) ;-) ;-)

    Louise Warvill

    Charity Secretary

    Thyroid UK

    On behalf of the Admin Team

    xxx

    ps - you could always try making HYPER bold! square bracket b square bracket HYPER square bracket backslash b square bracket (no spaces)

  • sounds good :)

  • Morning! I agree it would be a great idea.

    xx

  • It must be very frustrating. I am in the hypo section now. but was hyper for many years.

    Age 13 - first diagnosed with overactive thyroid. I am not sure what they did to me but I know I was in hospital, in isolation on phenobarbitone for three months (this was in 1958 so a long time ago!)

    Age 18 Partial Thyroidectomy, but still very fragile mentally and finding it difficult to make relationships work. Became a single mother at 20 and my father died 3 months later. This left me as the main breadwinner with a child and a widowed mother who was never the same again, and who was diagnosed with cancer three years later, had major surgery but recovered.

    Age 30 overactive again, but not recognised, mental hospital, no treatment except the offer (refused) of Valium, which I refused, because I wanted a cure not a security blanket.

    Age 37, Hallucinations, Mental hospital, Thyroid Storm, treated with Carbimazole and Propranolol, Diagnosed with Toxic Nodular Goitre and following this, Total Thyroidectomy.

    Never, at any stage, did anyone try to find out why my thyroid kept misbehaving, so to this day I do not fully know why this happened, but what I DO know is that it destroyed every relationship I had including with my mother because the trick cyclists were convinced that my extreme anxiety and 'personality disorder' were caused by a bad relationship with my mother, and I foolishly accepted this.

    The reality was that I had an illness which was destroying my mind and my body, and I was desperately trying to live a normal life through all this, but every time I achieved a small success (qualified as a teacher at 28) it was at the expense of my health and mental wellbeing.

    Since my TT at 37 I have, of course, been dependent on Thyroxine, and for many years until I was 60 I was reasonably healthy. Although I was never able to teach again due to the stigma of being wrongly diagnosed with mental illness (goodbye to the job I loved and had always dreamed of) I did manage reasonably well for the rest of my working life in accounts offices. I spent many of those years also caring for son, and for my mother as she had cancer three times in all, although living eventually to the age of 80, and cancer free!

    At 60 I moved home and changed doctor, he decided I was being overdosed with thyroxine and reduced from 150 to 100 which has been a disaster for me, damaging my health even further by causing high cholesterol, depression, and enlarged heart to add to the valve damage done when I was overactive,

    I am now in process of adjusting my Thyroxine back to where I was feeling OK, and there are happy signs, I am less depressed and feel hopeful.

    I was eventually married at 47, a year after the death of my mother, and to my amazement I have not done anything to destroy it! I have been reasonably happily married for 21 years. I now have three grandchildren and my younger grand-daughter told me the other day 'I really, really like you. Nanny!' No-one ever really, really liked me when my thyroid was making me into a monster. Life, then, at last, has brought happiness to me.

    So I do believe that the final total Thyroidectomy was the answer for me, even though it plunged me into to the mire of thyroxine treatment and all that entails!

    So there you are, a life in a nutshell, and a sad indictment of the medical profession who treated me as a mental patient for so many years (even last year my doctor said my depression caused by thyroxine deprivation was a mental and not a physical problem. I intend to prove him wrong.)

    I write this to show that some of us my well be hypo now, but quite a few have arrived here from where you are.

    What I have learned, if anything at all, is that whether over- or under-active, the medical profession is more ignorant of the workings of the thyroid than they were 100 years ago and also how willing they are to give you mind-altering drugs instead of treating the illness.

    Sorry that it is so long, I hope it gives you some insight.

    I also hope that you find what you need on the support forum.

    In the meantime, hugs, Marie XX

  • Well, Louise, I tried to make 'hyper' bold and ended up making the whole post bold! Clever stuff!

  • I see what I did, the \ should have been BEFORE the b not after it. ha-ha!

  • Good try :D Have edited for you!

  • Dear Marie,

    Saying I am sorry is, of course, a cliche. I have had a similar journey but for different reasons although thyroid related. My Auntie lived in asylum for the mentally ill for much of her adult life because she had problems with her thyroid (1940 to 1970). Some psychiatrists and other mental health workers do test for thyroid related issues and Mind now recommend that people with apparent mental health symptoms should be given thyroid function tests. Yet the inappropriate mental health diagnoses still continue!

    Good luck

    Regards

    Lin

  • Thanks Lin.

    I must say that reading it over afterwards it really is quite a horror story, There are a few bits which are pretty awful which I left out, for example an incident in my childhood which I am thinking could possibly have been what triggered the hyerthyroidism, in the light of something I read recently.

    I do sometimes look back and weep for the lost years but mostly I am just grateful for what I have now and thank God that it was not too late for me.

    Marie XX

  • Thank you for taking the time to post this Marie. I'm glad your story is happy in the end and you got to experience some solid and loving relationships. I am just coming to terms with the damage this illness has done to my life and my relationships and to how I see and feel about myself. I find it a very isolating illness, and I'm torn between being quite happy in my own company and not wanting to mix with anyone to feeling like my life is wrecked and its too late to make it ok so there is no point in fighting for anything else. Your story really touched me, and I hope I will end up in a better place too.

  • There is light at the end of the tunnel.

    The fact is, it IS an isolating illness, and much of the time it is hard to live with oneself too. That's why I said that no-one 'really, really liked me' when I was hyper.

    I think I was quite attractive when I was young but my unstable personality was too much for most people to handle.

    Please, please never forget that you are not the illness. I hope that you will be able to find a solution which will enable you to start living the life you deserve. You don't say what treatment, if any, you are having, I will look at your other posts to see what is happening with you,

    Bless you and a big hug

    Marie XXX

  • PS I find your name interesting. Did you choose it for any particular reason?

  • None that I can think of! Thank you for your lovely post. I'm not having conventional treatment atm. I don't like carbimazole and dont want to destroy/lose my thyroid altogether. From what I read people have lots of difficulties feeling ok once they are hypothyroid. I know I will most likely end up hypo in the end and I dont want to rush there.

  • hi i understand you very much i have hashimotos which makes me go hypo or hyper i get my bloods checked every 3 months at the mo or when i feel really tired or i get palpitations its really frustrating i only get a couple of days a month where i feel fine then it starts again i catch every bug at the moment and every one thinks im a hypercondriac its no laughing matter joanne xxx

  • Hi marram

    Your story really resonated with me, I too began my thyroid journey when I was a child in the 60's.

    The impact of this awful illness on all aspects of my life have been incalculable, I continue to fight it but do feel very alone and have no hesitation in saying that the medical care/help etc out there for people struggling with this illness is shocking.

    Doctors have certainly tried to go down the mental health route with me too, I never allowed them to so they tried all the usual ME, Fybromyalgia, Hypochondria etc, etc, etc and were perfectly happy to ignore my symptoms and leave me to suffer.

    I no longer listen to the doctors and do my best to treat myself, I am certainly no worse for this decision and probably a lot better off.

    Hope you continue to go from strength to strength!

  • Hi to all in fact....

    My hypo symptoms have been tested via blood only to find that they think I may be hyper! i.e. very low ft4 and high ft3. So of course they are over the moon that I'm converting so very well and technically I shouldn't be having problems at all. Hence, stalemate.

    It's a difficult one really as in many ways where we seem to swing between one and the other you don't always know which to read up about more. That said a seperate area sounds good to me.

    I too have had the CFS, then fibro diagnoses and lastly because of increased hypermobility now everything has been put down to that instead.

    I don't know if anyone knows but if we are producing lots of t3 via the peripheral tissues because of a low t4 is this the same 'quality' as the t3 that would have been produced from a normal amount of t4?

    I ask because of my hpo symptoms and because I read that, 'However, serum T3 measurement, whether total or free, has limited utility in hypothyroidism because levels are often normal due to hyperstimulation of the remaining functioning thyroid tissue by elevated TSH and to up-regulation of type 2 iodothyronine deiodinase (75)’.

    I don't really understand this?

    It implies that the t3 produced from overstimulation is somehow different from the t3 produced by usual conversion methods.

    Can anyone help?

  • I'm not sure Tulula, but I read it slightly differently.

    To me it suggests that the increase in TSH acts on the bit of your thyroid that is still working properly, making it work harder and produce more hormone.

    On top of that the body is making more T3 from T4 than usual - by producing more of the enzyme that converts T4 to T3 (iodothyronine deionase).

    These 2 factors mean that even with a poorly functioning thyroid you might still end up with a 'normal' T3 reading. To me it doesn't suggest that the quality of the T3 is different.

    However I'm not a biologist or neurologist, so its a very uninformed interpretation. there may be someone here who know more.

  • Thanks SambBonjela

    Yes, another person ahs also said that the 'quality' is no different per se.

    It is perhaps the actual measuring of ft3 in these circumstances that is of little use as the body is being seen to redress the balance of low t4 by producing more t3.

    This is why they often don't bother to check it perhaps. That said the fact that my body is indeed doing this does imply that there is a production issue with t4.

    The question is why?

    Why am I not able to produce good quantities of t4. If it's not anti-body related (neg on TPOAb and awaiting TGAb) then why else does the thyroid stop being able to produce enough t4.

    My readings for t4 have been down at 12ish since at least 2002 when I was diagnosed with CFS. TSH was at least down at 1.54 then. It was in 2009 that it shot up to 2.4 and has been there since.

    Oh it makes me so angry when the symptoms all relate to thyroid, the hairloss, eyebrows missing, cold, muscle weakness, tendonitis at both knees and elbows, etc etc etc.

    It's a ruddy joke it really is.

    Thanks for the input though I think you are right and I have reread the comment and now see it differently. Thanks.

  • Hi,

    I'm Hyperthyroid and joined the website hoping for some answers and advice. I do appreciate Hypo is more common and therefore traffic is higher. I look at the website every day hoping for more info. I'm at the severe end of Hyper and have to have my thyroid removed. At the moment I'm trying Acupucture to relieve some of the symptoms as well as being on meds. so, yes please to a subsection.

  • We are always looking for case studies for hypERs to put on the main website too. So if any of you feel like submitting your story, that would be great.

    Traffic on this site moves so rapidly, hence posts vanish from immediate view very quickly. Whereas on the main website they are static and always available to all visitors.

    Here's the link for the hypER stories

    thyroiduk.org.uk/tuk/get_in...

    and here's the link to submit your own story

    thyroiduk.org.uk/tuk/get_in...

    .

  • Hi there,

    So glad there will be sections for different subjects in the near future. The site does currently seem to be about hypothyroidism more than other forms of thyroid disorder. Like many of us I have had the experience of being hyper and I can empathize..

    Regards

    Lin

  • Hi, I am hyper too and just recently diagnosed - Graves. I also joined this site hoping for more info & support re hyper issues. I have just begun Carbimazole - just 10g a day as I am

    working abroad for 3 months and my GP doesn't want to over medicate seeing as I can't have a blood test for so long. Even after one day on medication my pulse slowed - amazingly. I thought it would take weeks...Anyway, keep writing and I will respond.

  • I am inclined to agree with you there. I too am Hyper/Graves and have had difficulty finding many members that have the same. Since joining Thyroid Friends on Facebook I have found many more like us far easier but it would be good to have a division just to find info easier.

  • I'll check that out. I'm in some fb graves disease forums and they certainly saw me through my worst times.

  • Hi SamBonjela - sorry I assumed you were hypo in your PM about the Bristol meeting :( We do have a number of people with graves who come along to the group, although I think most if not all have had TTs. You would be most welcome :) xx

  • Hi Clarebear, Thank you - I think it might be interesting to come along anyway to check it out, although I think I'm unlikely to make it this time, I'll keep an eye out for your announcements

  • Hi Sam

    I feel the same about the whole Hyper thing. Many a time I have found that people presume that you are Hypo and therefore their advice can be unhelpful to say the least.

    I have Graves and I am on carbimazole. I know it is no-ones fault but it can be a bit depressing to read tons on being hypo and having to skim through them to get to the relevant stuff for us hypers.

    I dont really care to know ( at this stage) about erfa and armour and T3 stuff, even if it is something which I may need to know later. I want quick and easy access to stuff that relates to my condition such as joint pain, carbimazole, scans, goiters, endos weight loss or gain, surgery and RAI etc.

    Two different conditions after all.

  • Yes please. A section for hyper would be lovely and perhaps would help eliminate some confusion particularly to those who are newly diagnosed and confused enough as it is! :)

  • It sounds a fair concern as it's not fun to feel excluded or like hyperthyroid related posts might be getting lost in all the hypothyroid info posted. I imagine part of that's to do with a lot of hyperthyroid patients having been treated in a way that means they then end up hypo, but it's worth noting that some people with Hashimoto's for example do experience hyper periods too (I know I have unfortunately, as well as being over replaced with meds before too), so it does benefit us to read about hyper stuff too, so it'd be a bit sad to have it separate in some ways.

  • excluded probably wasn't the best word - I think 'invalidated' may have been better.

    If you look at a few of my posts you might understand that its frustrating when people keep responding to you as though hypo were the only state that exists even though you've stated very clearly that you're hyper.

    I also noticed one of the admins posts advising a person seeking hyper advice to search the forum for the word 'hyper' and then pm all the people she identified as such. Why should hyper people do that? why can't they use the forum as a forum, in the same way that hypo people do?

    I have found the 'Peer Support' in facebook forums invaluable at times and a UK forum could be even more useful, but it doesn't work for me in its current format because this seems to be a group of mostly someone else's peers.

    A subsection would just mean you could go to a place where you know people are talking about the issues around your condition, so if you were in a hyper state, you would know where to go for support. You are never hypo and hyper at the same time, these are separate states, so why be sad if the posts are separate?

  • I can definitely understand how frustrating it must be if people don't read your posts well enough to see you're asking relating to hyper. Sorry that's happened to you and I guess you are right about the subsection being helpful to avoid that.

    I'd be happy as long as it's possible to get all posts hypo and hyper subscribed to with things like the daily digest then it'd still be easy to read up on both, which is my preference - I do like to do just so I'm in the know/prepared even though I'm obviously never suffering from both at once (although as an aside I've read a few things suggesting it is possible to be hyper and hypo at the same time for those rare people with Grave's and Hashimoto's, though I've no idea how that manifests/can be possible exactly in bloods).

  • I'm not sure how that works either - maybe that should also be a separate forum - I'm sure anyone who is rapidly cycling between those 2 states, if that is possible (which I doubt, or they might just feel normal - what is the half-life of a thyroid hormone?), have their own set of special problems

  • The supposed half-life of T4 is somewhere around a week or so. That of T3 nearer a day.

    I say "supposed" for several reasons:

    o.. The effects of the hormones last much longer than the level in the blood serum that is tested. For example, it is suggest that a dose of T3 in a mouse will have impact on serum levels for, maybe, two days, but continues to have an effect on the expression of genes within the cells for perhaps another five days. (Sorry - don't have a rapid source of this sort of information about humans.)

    o.. In a body that is desperate for thyroid hormone, it has a distinctly shorter half-life.

    o.. In a body that has an excess of thyroid hormone, is has a distinctly longer half-life.

    o.. The concept of half-life that many of us are familiar with that comes from radio-active elements doesn't really translate very well into thyroid hormone levels.

    So I am perfectly happy to believe that all too many people have mixed hyper and hypo issues simultaneously. Though this is most likely when doses are being adjusted and when the person's on thyroid is erratic.

    On the main Thyroid UK site there are two lists - one of hyper symptoms, another of hypo symptoms. And all too many symptoms appear on both! E.g. poor sleep. palpitations.

    It certainly seems to be the case that as soon as thyroid hormone levels are off, things start to go wrong throughout the body and brain. When the perturbation is small, I suspect it can be very hard to know which way it is going.

    I think this quote from Thyroid Manager says quite a bit about the overlaps of Graves' and Hashimoto's:

    The Syndromes of Thyroid Autoimmunity

    The syndromes comprising autoimmune thyroid disease are three intimately related illnesses: (1) Graves’ disease with goiter, hyperthyroidism and, in many patients, associated ophthalmopathy (2) Hashimoto’s thyroiditis with goiter and euthyroidism or hypothyroidism; and (3) primary thyroid failure or myxedema. Many variations of these syndromes are also recognized, including transient thyroid dysfunction occurring independently of pregnancy and in 5 – 6% of postpartum women, neonatal hyperthyroidism, and neonatal hypothyroidism. The syndromes are bound together by their similar thyroid pathology, similar immune mechanisms, co-occurrence in family groups, and transition from one clinical picture to the other within the same individual over time. The immunological mechanisms involved in these three diseases must be closely related, while the phenotypes probably differ because of the specific type of immunological response that occurs. For example, if immunity against the TSH receptor leads to production of thyroid stimulating antibodies, Graves’ disease is produced, whereas if TSH blocking antibodies are formed or a cell destructive process occurs, the result is Hashimoto’s thyroiditis or primary myxedema.

    Associated with autoimmune thyroid disease in some patients are other organ specific autoimmune syndromes including pernicious anemia, vitiligo, myasthenia gravis, primary adrenal autoimmune disease, ovarian insufficiency, rarely pituitary insufficiency, alopecia, and sometimes Sjogren’s syndrome or rheumatoid arthritis or lupus, as manifestations of non-organ specific autoimmunity. Of particular interest recently has been the description of pituitary antibodies and growth hormone deficiency in a around a third of patients with autoimmune hypothyroidism, implying the existence of a substantial reservoir of pituitary autoimmunity in these patients but further work is needed to confirm these findings and to understand the basis for the autoimmune response against the pituitary.

    thyroidmanager.org/chapter/...

    I do understand your original post. I have much sympathy with it. And I for one do not know what the best answer is.

    One suggestion I have - which would require an HU change - if people could choose an additional word or icon that appears alongside their online name - saying "suspected hypothyroid"; "Graves' on anti-thyroid"; "multi-nodular goitre", etc.

    Rod

  • interesting post - I agree on the cross-over of symptoms, for instance I gain weight, have low bp, fatigue and muscular pains and cramps in the hyper state, however I am in a hyper state not a mix of the two.

    I was just questioning the notion that you can be hypo and hyper at the same time, even if your thyroid stopped working every few hours, you would still have hormone in your system (my concept of half-life comes from drug research).

    My original post came after an interaction where someone told me that my depression was a result of having a high TSH. I said my TSH was <0.02, so she then told me that my depression was a result of having a normal TSH. Given that, I dont think having 'Graves in hyper state' next to my name would have made a difference as it seems like the whole concept of being hyper in this forum is anomalous.

    I have found some of the blogs and discussions really interesting and would continue to check into this site either way, but its my experience as a hyper gravesian that this forum is predominantly for and about hypothyroidism. I think different sections might help to address that.

  • I didn't realise you had responded.

    Blood pressure is an interesting one - it looks as if hypos can have low or high BP as a consequence of their thyroid levels.

    We have had quite a number of Graves'/hyperthyroid blogs and questions since the forum was started - indeed, that was from something like the fourth or fifth real blog. Certainly not as many as for hypothyroid in its various guises but a steady stream.

    I believe that you definitely can be hyper and hypo and the same time.

    This might be based on the ability of tissue take in thyroid hormone, to convert, or being resistant to thyroid hormone, or even flow of thyroid hormone through blood vessel walls and interstitial fluid to cells. Or maybe each side of the blood-brain barrier? Given that transfer of thyroid hormone from outwith the cells into the interior is an active process, it seems very likely that the adequacy of thyroid hormones will vary through the body.

  • Ha! maybe I forgot to heed your advice and 'Reply to this'!

    The content of your last para opens up more complexity than my little walnut can handle right now - I'm sticking with hyper=too much hormone hypo=too little hormone being produced by the thyroid - I guess its clear from the broad variation in experienced symptoms that different bodies react differently to excess/insufficient hormone.

    I feel like I probably should concede that maybe my 'hypo-like' symptoms are down to me being hypo in some aspect (some tissue or cell or whatever), but I just can't bring myself to do it :P

  • this might be why I have no friends...

  • I think your comment is very valid and would be a good idea. I have posted and have received support/help. I think putting HYPER in the heading helps, especially now when there has been a marked increase in the number of posts coming on my daily email.

    I have found the following sites (which I always post if others are asking for hyper support) as they are related more to hyper states. Dr Eric specifically treated himself with a natural protocol.

    Elaine Moores always answers very quickly and has very good suggestions/help.

    And the third link (again American) however I found helpful in understanding how a clinical diagnosis might be reached based on blood test results.

    For myself, I would also like to see complementary therapies given a separate section...again in relation to hyperthyroidism.

    And, of course, I could also suggest a section on goitres and how complex they might be!

    A lot to try and get right to please as many people as possible.

    Currently I just feel rather 'overwhelmed' with the volume that now appears in the daily email and I do recommend that the subject headings have to be short and concise so anybody viewing knows if they can help.

    Another good debate though....so thanks for posting.

    naturalendocrinesolutions.com

    elaine-moore.com

    ccjm.org/content/77/11/803....

  • thanks for the links. a separate area for complimentary/alternative treatments is a great idea imho

  • I agree! Yes please, it would be very useful to separate hyper from hypo post. The vast majority are, of course, hypo as it is so much more common that hyper.

    It might be complicated by the fact that lots of posters don't mention hyper or hypo and just assume that everyone here is hypo! ;-)

  • I don't know anyone will pick up this reply as the last activity was 8 months ago. I was looking for any replies to thread that I had posted about a month ago but could not find.

    Originally this thread was putting forward about separating Hypo and Hyper threads which has now been done, plus a Newly Diagnosed thread too. All good stuff.

    My additional suggestion would be that a person who has initialed the thread should be alerted by an automatic email back to the originator of the thread, generated from this site when there has been a reply or activity on the thread, to include a direct link to the site and the thread.

    As a newbie to this forum and still very confused about Thyroid issues. This thread is very informative giving sensible and basic explanations and including informative site links. So thank you for all contributors and Cellora. I did not realise that a person could have periods of hypo and hyper as Hellvela suggests, as there are times in my life that seem to have had both extremes with various normal periods in between. To coin a phrase "it does your head in". Mine really displayed in an extreme rearing its ugly head with severe Post-Natal depression in the late '60s. I empathise totally with Marram and probably lived some of the horrors as she has too. I understand and want to hold your hand - if thats not too corny.

    It makes sense especially now having undergone a total Thyroidectemy in July and could not understand why one minute I can "rule the world" with loads of energy, enthusiasm and worrying my DH to distraction, as the change that takes place to the other extreme in a matter of hours - tired, weak, very tearful, depressed and hopeless. At least I am hoping that this stage will be a temporary phase. My doc says that it could be up to 6 months for stability - fingers crossed, and is taking monthly blood tests and adjusting the dose of thryoxine as necessary.

    As an aside. The huge amounts of activity of people using and joining this site is outstanding. It is my belief that in the UK particularly, both it should be mandatory for GPs and Psychiatrists to undergo training in tandem to understand the link between thyroid conditions and psychiatric illnesses. These tests should be carried out before GPs make a psychiatric referral (so that they can work together) - measuring thyroid function, vitamin and mineral deficiencies, malabsorption and basal body temperature (what a revelation that was - could have been diagnosed as a teenager cos always have had a lower body temperature no matter what time of day). It makes sense to me because as people grow older then the metabolism automatically slows down so more detailed diagnoses at a younger age could help to avert illnesses in older age. One day perhaps.

    White_Mist

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