In 1953, when I was 8 years old, I suddenly started putting on weight, for no reason. Nothing had changed in my diet. Food was tightly controlled in our house, and there wasn’t much of it – food rationing in the UK didn’t end until 1954, and you still had to be able to afford it! I also developed a lot of hypo symptoms – although I didn’t know what they were at the time, of course. My skin was bad, and my hair was dull, limp, fine and thin. I always had some sort of infection, a cold or a cough or a sore throat. I had no energy, motivation or concentration. I couldn’t run to save my life, because I couldn’t breathe properly, and I always had the impression I was going to pitch forward and fall flat on my face. I was always at the doctors for something or other. And, of course, none of them helped, or were even interested. But as far as I know, I was never tested for thyroid until…
The diagnosis
In the year 2000, I started having severe back pain. Over the years, I’d often had problems with my back. It used to get stuck in awkward positions, such as twisting round to fasten my stockings, or just sitting on the toilet. But, this was different, and I found myself in the GPs waiting room again. Long story short, I was ‘diagnosed’ with a slipped disc I didn’t have, and had surgery – but that’s a whole other story.
After the op, I was putting on weight at the speed of light. You could almost see me swelling with the naked eye. My GP at that time, had a thing about over-weight women: he hated them. And, we had many a set-to, where he called me a lying greedy pig – or words to that effect – and I told him, in no uncertain terms, that he knew nothing about nutrition. Finally, he said he wanted me to see a nutritionist. I thought, well, why not. He gave me the number of a certain Dr ABC, and I rang it.
The voice at the other end of the line told me that Dr ABC was no-longer practicing in the area, and would I like an appointment with Dr DEF who had replaced him. I said fine. But, when I turned up at the address I was given, I was very surprised that the name on the brass plate was that of an endocrinologist, not a nutritionist. But, once again, I thought, why not.
She examined me thoroughly, asked some questions and ordered some blood tests, and the up-shot was I had Hashi’s/hypo. I had no idea what that was. She said, “You just take this little pill (50 mcg levo) for the rest of your life, and in two weeks’ time you won’t recognise yourself!” For the weight gain she told me to cut out all traces of fat and oil from my diet and live on soup.
It was true, after two weeks I didn’t recognise myself, I felt so much worse, and I was putting on even more weight. At my second appointment she put this down to my ‘negative attitude’. I am not a negative person.
Show-down time: At my third appointment she told me that all my numbers were now in range so she didn’t want to see me again for six month. I said I still felt awful, and I didn’t think the levo suited me, wasn’t there an alternative. She said no, that was the only treatment that existed. I went home, never to return, and cried.
I sat at my desk, in front of my computer and cried all the tears in my body. When I finally dried up, I looked at my computer and thought, “I know! I need a book!” So, I went onto amazon and ended up buying Mary Shomon’s Living Well with Hypothyroidism. And, a whole new world opened up before me! I joined her forum. And never looked back.
Dr EGH, GP
So, having decided that I would never go back to the endo again, and reluctant to continue seeing my former GP, who had read the endo’s letter and proclaimed “Oh! You have a goitre!” with an expression of absolute bewilderment on his face, (I didn’t have a goitre, but for him ‘goitre’ and ‘hypothyroidism’ were interchangeable terms: he didn’t know what either of them meant) I was forced to find another doctor of some sort.
Dr EGH, unfortunately, was just as clueless. He wanted to keep my TSH at 9, because that was close enough to 1, in his opinion, and he didn’t want me to ‘tip over’ into hyperthyroidism. This was the doctor that ‘explained’ to me how Hashi’s worked: according to him, the antibodies formed a hard shell round the thyroid so that the hormones couldn’t get out, and that’s what made you hypo. And, when I complained to him about my hair falling out, he looked at me thoughtfully and asked “Do you ever go to the hairdressers and get it cut?” My hair was about half an inch long all over at that time, and I wanted to say “no, I chew it off with my teeth!” But, before I could translate that thought into French, I found myself hustled out into the waiting room, and the door firmly shut.
Show-down time: He said he thought I should consult a psychiatrist. I asked why he thought that. He said, “Well, if I was as fat as you, I’d need to see a psychiatrist, too!” I almost hit him over the head with my copy of Dr Broda Barnes’ book Hypothyroidism: The Unsuspected Illness. He thought I was going to, and quickly wrote a reference letter to Dr LMN in Paris.
Dr IJK, Endocrinologist
During my time under the ‘care’ of Dr EGH, I was rushed to hospital with unbearable pain in my right hip. They thought I had a femoral neck fracture. I didn’t, we never found out the cause of the pain, and it went away by itself. But, during the ten days I spent in hospital, it was suggested I see their endo, Dr IJK.
Dr IJK burst into the room, without knocking, slamming the door into the adjacent wall. He ordered me out of bed, stood behind me and felt my thyroid. “Can’t feel anything,” he said. He asked me if I took my little white pill every day. I said I did. “Then, there’s nothing wrong with you!” he snapped. I said, “Well, don’t you think a TSH of 9 is a little high?” “Possibly,” he said. “But I’m not taking you on, I’ve read your file, far too complicated for me!” And he slammed out of the room again.
(Just as an aside, whilst I was in that hospital, they tricked me into seeing a psychiatrist by calling him a ‘pain doctor’. His considered opinion was that the pain in my hip was due to my children leaving home and me not knowing what to do with the rest of my life! Possible arthritis (surgeon’s theory) caused by Empty-Nest Syndrome! Maybe he’ll be able to write a paper on that in some obscure medical journal. But, he’d have to do it without me, because I never kept our following appointment. I’d discharged myself from the hospital by then.)
Dr LMN, endocrinologist
I made an appointment with the good doctor in Paris, and travelled for two hours to see him: bus, train, metro, another bus and a good, long walk. I sat and waited two hours for him in his waiting room, along with several other very unhealthy-looking people. No examination, he just read my GP letter and asked me what I wanted. “I want Armour,” I said. “Can’t have that,” he said. “Filthy stuff, unreliable, unstable, never know how much hormone is in it. Besides, it’s illegal in France.” It wasn’t illegal at that time, but it was unobtainable. “OK,” I said, “I want T3.” “OK,” he said, writing a prescription. “It won’t do you any good, but you can have it if you like.” He then told me I didn’t need to see him again, we could consult by telephone. “Give me a ring when you get these labs done,” he said. And, he was gone.
He’d given me Euthyral: 100 mcg T4 and 20 mcg T3 per tablet. I’d got my T3 at last! And, it did do me some good. I wasn’t back to normal, but on two tablets a day, I certainly felt better than on T4 alone.
Showdown time: Dr LMN’s secretary would never let me talk to him! “But he told me to ring him,” I said. “Oh,” she said, “he always says that, but he knows he hasn’t got time. I’ll tell him you rung and send you your prescription, and form for blood tests. Good bye.” This went on for some time, until one day, she suddenly announced that I couldn’t have any more prescriptions until I’d been in to see him again. That was just one step too far, and I told her exactly what I thought of their Mickey Mouse set-up and slammed the phone down. Then, went shopping for Dr OPQ…
So, that turned out longer than I’d expected. I’ll stop there and post more tomorrow.
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greygoose
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I think a lot of members have very similar stories and I thought that things might improve after I was diagnosed 10 years ago. Unfortunately it hasn't and I see loads of middle aged women who are overweight and with thin hair and I can tell they have thyroid disease. The last time I was in the hairdressers a woman limped in and started to complain about her swollen ankles etc. She was wearing slippers because she could not get her shoes on. She then revealed she had hypothyroid and her doctor had overdosed her on Levothyroxine. I don't know how I managed to keep my mouth shut because as you know I always speak my mind on this site and in my real life. She then says she is a retired nurse! I was gobsmacked and thought if she can't get the right treatment with all her connections no wonder nobody else can.
Recently there was a short series on UK tv called "The Diagnosis Dectectives", presented by Michael Mosely (very interesting dr, lots of books). A panel of (private) drs sit in conference on selected patients files who have gone undiagnosed and with medical disinterest on the whole. I felt a hollow laugh a number of times when various comments were raised about why something had not been picked up sooner regarding some sympton or another, particularly the young woman who actually had PCOS. but of course, life is not like Holby City and people who have had little contact with health professionals think you are unreasonable and hysterical for being less than grateful for naff and often clearly wrong advice. I was recently aggressively treated for questioning the non listening useless advice towards my childs chronic condition. She said what do you want ..what do you expect. Some joined up thinking I said... well thatt went down well
Thank you so much for your post, being open (as always) and, for sharing your story.
Like a good novel, I am looking forward to reading about, your experiences, later on today, when I can sit down, and have the time to read it properly...I have to go out soon.
You will have many members getting in touch, because you're a Thyroid guru, and one of our favourite contributors on this site...you have helped so many of us....for that, a big "thank you" xx
Grey goose I feel so sad you went through all this and I can’t believe how those doctors treated you and the awful words they said. What a journey and I can’t wait to read the second part of the story and how you got well . This story will help so many people to empower themselves . Thankyou for sharing 🙏
Beautiful that you are able and willing to spit it out! I've done more or less the same thing two years ago, and, while nothing can really put all this behind, as it will follow us to the final note, it helped me in coming to terms with my struggles.
Good read Greygoose. On the edge of my seat waiting for part 2 .... really. I want to know what happened next. Hope you have found the writing process cathartic.
Thank you. I've always enjoyed writing. But, to write something like this, you have to be in the right place in your head, which is why I've never done it before.
Looking back, I can see so many signs my mum was sick for a long time (at least 10 years) before diagnosis, and that she was then never properly medicated. Your story just reinforces it!What a terribly long ordeal to get diagnosed. It's an interesting insight into the French attitude to overweight people too.
Well, that was just one doctor that didn't like fat women. Maybe his attitude would have been different had I been a man. They don't all make nasty comments about weight.
Wow, what a horrific time you've had.I'm surprised you found the strength to carry on looking for a solution after the arrogant, dismissive way you were treated by the so called caring proffession.
I guess I'm not alone when I say that much of your thyroid journey is familiar. As you know I'm aged 75 and now think I've always had a type of thyroid disease, but wasn't diagnosed until 2000 by which time I could barely function. I eventually had to beg for a thyroid test.
I wonder if medics are taught to say," just take this little white pill for the rest of your life and you will be well".....it tripped off my then GP's tongue like well rehearsed verse... and in an irritating and condescending tone. A portent of things to come!
She was wrong....and it didn't!
I was unwell until I found this forum and the extensive knowledge and experience of members like "greygoose". Medics, over decades, had no answers. You most likely helped save me from bed-ridden years and an early grave....like my maternal grandmother!
Your words can only be encouragement for members who are struggling against a system that fails patients who do not respond to levothyroxine....and medics who cannot correctly interprete test results. There is light at the end of that long, dark, often lonely tunnel that is thyroid disease.
Keep writing greygoose...you are an inspiration. Please!
And we've only had the first chapter so far...looking forward to more!
What a story. I’m sure many will find similarities! It reminds me of the time I said ‘well if there’s nothing wrong with me, I must be crazy!’ So doctor at the time was more than willing to refer me to a psychiatrist! Wish I’d gone because many psychs learn about the thyroid as a potential source of mental illness. (That was the 70’s). I could go on but the what saddens me is that some of those attitudes survive . Pure sexism and misogyny.
I think most of those attitudes survive! In the 20 years I've been dealing with this, I haven't seen much change.
I recently took my granddaughter to see her GP, because she has so many possible hypo symptoms. Quite a young man, but he just sat there and looked disinterested while she tried to list her symptoms - she was rather over-whelmed by it all - until I said 'she's losing her hair'. At which he jumped and said 'ah ha! now I believe you!' And, I thought blimey, another one that hasn't a clue!!! Not much changes.
Yep I could do a list - 1966 saw doctor because so thin (the years of Twiggy a blessing and a curse). 1968 studying architecture - how do you make perfect line drawings when your hands pouring with sweat and you’re tired from walking round the streets half the night and can’t sleep? Anyway after years of being over and under I eventually got diagnosed in 1978/9. Funny I’ve known men go to the doc with tiredness and immediately had thyroid test. Women? Well we’re just tired ...and possibly anaemic? Never been anaemic in my life but it’s the first thing doc’s think of when it’s a bleeding woman! And when I’ve put on weight (fluid ‘72 and’76) best not to do it from a base of 7st 2 lbs as nobody sees it as a problem! I could go on but I’m now 70 and despair of the continuing disrespect. Look forward to chapter 2!
Who says I'm not bitter and full of ressentment? It's just that that doesn't get you very far. However, come the revolution, I will personally line them all up against a wall and...
I wouldn't even give them that [75mcg]- I'd do to them what they've done to so many of us time and time again "have some antidepressants - they'll do the trick"
Ah....I'm starting to understand your opinions of Doctors ..... currently concerned you'll run out of Alphabet...
I've only ever tried being ignored in my native language , it must be much more frustrating to have to translate into French before they ignore you.
Such a shame you restrained yourself from trying to knock some sense into Dr EGH.
I've re-edited your narrative in my head... now you pick him up by his lapels and hang him on the coat hook in the lobby on your way out, with a post it note saying "WARNING, I'm a TW&T" stuck on his forehead.... i think that's a much better outcome. For everyone.
I understand what you went through have been on thyroid medication for 60 odd years, my Mum recons I was born with a under active thyroid but it was never picked up, doctors said I needed my tonsils out, it was only when my mum was told that she was fussing and nothing wrong with me, something you never said to my Mum that it got sorted. Looking forward to the next part.
WOW! Greygoose I'm sure it was not easy for you to rehash your thyroid experiences. But I'm very grateful to you and I'm sure many on the forum are as well because they can relate going through it and even now many of the issues that you experienced.I know that I experienced many of the issues that you had. My symptoms where ignored or blamed on other things. For the weight issues I was told to eat less and exercise more. For my skin issues I was told to see an allergist. This went on for years . Till the day that I had a soar throat and even then my Dr made nothing of it. I pleaded till he pressed on the side of my throat that hurt me. Ran out of the room and came back that he made an appointment for a sonogram immediately. They found the nodal had biopsy and had TT. From nothing to all. You can't make this up.
Thank You for sharing your very detailed and unfortunate experiences. One day we can compile a book of all of our experiences. Never mind it would be the never ending saga.
Wow..., what a journey!!! I bet a great book could be created, each chapter a different patients experience!!! Wouldn’t that be a great gift to send to all these Endo’s!!Look forward to reading about how you found your way through the thyroid maze!!
I am so very sorry that you have had to endure such an awful amount of ignorance, and, unnecessary pain and anguish.
Your story has brought tears to my eyes, literally.
Like many, I can relate, unfortunately.
I am not going to talk about me, other than to say, "I get it, totally." I think this is why, it upset me a little, reading your story; your words brought back somewhat hurtful and painful memories.
One thing that I will add, is that, I too, have been called fat, by a male Endo (in Spain in 2018) who gestured an enormous person, sticking his arms out either side of himself, then proceeding to mimick stuffing food into his face. I am tall, and, this was after I had stood on the scales.
I have had Endo's in the last country, where I lived (North America) two of them, simply, should not be doctor's.
My last Endo (Spain) asked me what T3 is....hand on heart, I am being totally honest!
It is scary!
GreyGoose, because of you, I will always be eternally grateful....for your help and advice about my Thyroid Illness. Because of you, and this amazing forum, I found out that I have Hashi's. ..literally, you diagnosed me...a big "thank you."
And, because of another absolutely fantastic person on here (who has responded to you) I am now able to self medicate, and, feel 'normal.'....thank you x
I am looking forward to reading your next chapter GG....and, I will have the tissues ready !!
Thanks so much for sharing, you take a humorous tone, but the way you've been treated is disgusting! Sharing really helps because when you are alone with these professionals and they keep insisting you are mentally ill it can be easy to give in and conclude they are right. It's like being under police interrogation and admitting you did the wicked deed even though you know you're innocent because you have been told you did it so many times and you just want to move on with your life!
Thank you for sharing your story grey goose. If helps to shine a light on the horrendously poor diagnosis and treatment of this condition. I know of no other condition that is treated so poorly, both myself and my elderly mum have hashis. Mum also has rheumatioid arthritis its a horible disease too, and whilst not minimising it in any way, she has regular out patient appointments and a specialist nurse we can phone for avice at any time. The nurse looks carefully at all her blood results and is so well informed and up to date with all the new medications and treatments available . If only we were afforded the same treatment for thyroid conditions.
Oh lord GG, I don't know whether to laugh or cry! Both may be appropriate. Looking forward to the next instalment.
I remember your comments under my own thyroid story I posted a while back, and although your health problems began some 20 years before mine, it seems we've had very similar experiences. And today's generation of female thyroidies are still being put through the same ordeal by sexism, ignorance, and indifference. Makes my blood boil, but I'll stop before I go off on one (again).
I'm so sorry you have had to go through all of this, greygoose . No wonder you're such a font of wisdom here and have so much empathy for our struggles! Thanks for sharing. Looking forward to the next instalment!
What a story, can't wait for part 2. I don't know how you've had the energy to keep on going to different endos/doctors. I've only been trying 2 years as didn't know anything about thyroid up till then until it was suggested by a retired GP I was in touch with that in his opinion I needed treating for hypothyroidism. A psychiatrist was sent to my house a year ago (with my consent, as GP said go through a process) - wish I hadn't as now got that health anxiety label confirmed as 'severe health anxiety'. Twaddle. I have only just managed to get a copy of the psych's letter and am going to reply to it. I look forward to seeing what you did next as I have all but given up with doctors, they treat me terribly and I am not good face-to-face.
If only it had been just GPs/endos! I haven't mentioned all the other specialists I consulted in my quest for good health. Neurologiest, opthalologists, ENT specialists... I consulted them all to see if there was anything they could do. Plus the physiotherapists and chiropractors. All in vain. I've spent a small fortune on doctors. Sigh.
I've just seen a neurologist who was quite threatening in her manner after I had the nerve conduction tests for my worsening neuropathy. Lady who did the tests was lovely and took down some notes. One afterwards just took me in a room, sat me down, didn't turn the light on, stood over me and seemed quite hostile I realised afterwards. The neuro on the phone was very nice though and I have an appointment with her in June, but also have many more tests coming up in Jan. I was told by another consultant years ago I had psoriatic arthritis then they changed their minds a few years later - I think that was thyroid related now I think about it.
I once saw a neurologist, about 12 years old - if you know what I mean - who picked his nose all the way through the appointment. I thought I was going to throw up! And he was useless! 🤣🤣🤣
Your story... or a version of... will resonate with sooo many people here because we're probably all on this forum for the same reason...we've been fobbed off, we're still suffering, we've been ignored, we know our bodies and things are still not right, etc, etc...
In a strange way we are the lucky ones on here, the ones who found the strength to not just give up and accept our lot in life and to say 'enough is enough'. Sadly there will be hundreds...possibly thousands ... of people of people still out there who will never have the strength we've all found to seek out a Mary Shomon book, or discover the likes of Isobela Wentz, etc, etc...or in our case, this amazing, life saving, life changing forum, etc, etc
The message in your story is clear, inspiring and one of hope and a story that everyone who thinks 'this is it, this is my life now' should read. It's a shame you couldn't read your own story back in 1953 (hindsight n' all that...) but you're here now, stronger & healthier and passing on your years of knowledge and fighting spirit & encouraging others to not give up and to fight on.
Wow, GG you went through the whole spectrum of stupidity from no-nothing GPs and Endos. Their lack of knowledge about thyroids takes your breath away. We are still hearing such statements, as reported here, after decades now. It seems that no progress gets made. I had a few of those statements made, but fortunately from just one Endo just after my total thyroidectomy, and then i realized I was on my own and had better wise up fast. As a result I have been self medicating for almost 2 decades now, and seemingly perfectly OK.
A funny aside. I recently had a knee operation in hospital. Everything was running very smoothly and I felt confident all was well. A young, full of self confidence, intern bounced up to me and announced loudly as if she had made a great discovery, "You have hyperthyroidism!". I am actually hypo if not treated, "Oh yes" I answered "What makes you say that?". "Your TSH is .002 ! it's hardly measurable on our instrument!" she said. I didn't get ruffled at all I just said, "Well, that's just too bad, it's going to have to stay that way because the alternative (hypothyroidism) is far worse". She turned and disappeared the way she came.
lol I think they're going to have to start getting used to well-informed patients - even better informed than they are! Because that's the trend, and nothing is going to stop that now.
Part 1 was such a good read GG I can't wait for part 2 - I hope that writing it was therapeutic for you and that it was not traumatic going over all of the horrendous mistreatment you have had at the hands of the supposed medical profession ["would you like antidepressants along with your strong painkillers???"]. They should be ashamed of themselves. If it was me (which it kind of has been), I, personally would love to go back to every one of those rubbish docs and tell them what you know now - except it would be a monumental waste of time. You, on the other hand, have used your time and energy, far more wisely, to help others to stop them having to endure what you did.
The only one I would like to go back to is the idiot that prescribed me iodine all those years ago. I'd like to go back and smash him in the face and ask him what the hell he thought he was up to??? The rest of them just aren't worth the effort.
I know - knowing what you know now you would never have taken it then - I can think of a myriad of similar meds/procedures I submitted to which I now know made a very bad situation much worse for me. So many smashed faces [If I only had the arm strength!! LOL] Thank goodness I know now!! About iodine, I use himalayan salt, fairly liberally, and it is supposed to contain iodine among the other elements it contains- I'm thinking that it would be in such small amounts it wouldn't be harmful - would that be right do you think??
Thanks for your post Grey Goose. I can so relate to an awful lot of your issues. Reflecting back I am positive my Mom had this as well and was just never diagnosed. She ended up in her early 40's with breast cancer and just dealt with that for over 25 years before passing away from it. My Sister has the disease, my paternal Grandmother did and many of my relatives on both sides of my family have it. Doctors here in USA aren't what you would call 'real versed' either. I look forward to reading Part lll.
I think most of my family going back a couple of generations, were hypo, too, including both my mum and my dad. But I don't think any of them ever saw a doctor, let alone getting diagnosed. They just didn't 'do' doctors.
Wonderful piece of writing and we can all identify with various episodes, unfortunately. Your strength and ability to help others on here is remarkable.....I think this may have been a true calling in your life! Thanks so much.
Greygoose I was laughing reading your comment because it was so funny but at the same time sad. I have had similar problems for the last twenty years and had it not been for you and your team I would never had survived. A BIG THANK YOU!
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