Didly Squat

10 years since I was 10 stone 'normal' - but it's not about "inappropriate weight gain" god forbid I'd dare to make an appointment 'cos of just that! (wary of 'notes' I know there's something adverse there)

last symptom... ever... - btw 5 stone weight gain just eating 2 meals a day (500 cals each) = still feeling crap - half of the 'normals' need...========> hibernation, I know this, RT3 etc... yet... still gotta try..

4 years since half a thyroid out - 'tis a'nothing/insignificance, yet perhaps CFS/ME (drum-roll.. wait)

yawn - no difference, pacing= no treatment/help - just suffer and preferably en silence... seen 'em, - t'isn't me - yet still here moaning proves, er that I moan per se"

... hypo... chondriac = ignore - 2 stone in 2 months after op - then 3 more in 3 years! Thyroid & weight - you're just looking for a magic weight pill... ( no I'm not actually)but getting 'outta that bath is getting pretty tricky (bath=relax + essential)

1 year since given up smoking and (consciously) taking on NDT/T3 instead... (+ vits/minerals)

3 weeks "off hire" - (feel crap yet no palps & lip curl)

3 weeks to that GP appointment - er shucks, really? (no disappointment in MY voice) OK book me in (I have more crap but all can wait) - asked for my Actual appointed doc- wozsers 'she's so busy' she must be goood (My doc, endocrine specialist, p/t firm partner -never seen her - diabetes specialist - of course! hoping for a bit more (angel on right shoulder) - really? (devil on left shoulder) am I bi-polar? who isn't up & down?

yet - still wondering about a real diagnosis, will I have a real nose that can smell?

If I wait & make myself really poorly something WILL happen right?

confused, tired & can't remember at 53 ... jd

26 Replies

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  • I was just the same after TT. I disagree you should see the doctor with weight gain. That is another symptom of under treatment as well as the many other problems you describe. I have recently transferred from T4 to T3 have carried on with my 1000 calories a day (a few more weeks after 7 years wasnt going to be a problem). Have lost all the weight and feel like I did before op. Don't despair go back to the doctor or ask for a referral to an endo. Since your weight gain is probably the easiest symptom to explain use that as you main complaint. You can say that it is not healthy to have a waiste size of greater than 30 inches or whatever is these days, it's not about vanity etc and since you have always been 10 stone the only parameter changed is op. Therefore you would be right to decuce that you are under medicated. Simples. Don't be concerned about what's on your notes either just be concerned about getting well. Doctors do like to put labels on things I doubt very much you are bi polar either just another symptom of under treatment. I am 56 and it's taken me 7 years to get properly well. Don't give up go for it and you will soon be looking back thinking what was all that about.

  • Thanks, my reply below, darn it forgot about notifications!

  • Your posts are always entertaining and informative. Sad to read of your journey in this post - but somehow can still sense your humour/tongue in cheek :-)

    Am wondering about adrenals - and the weight gain ? I know you are a knowledgeable lady so I expect you have considered this. Even if you have not been aware of stress yourself - maybe your body has whilst undergoing surgery - before and after.

    Are you hoping for informative blood tests when you see your GP ?

    I too put on weight when I stopped smoking some three years ago - and am struggling to lose it. The Two Day Diet works well for hubby and I - different from the 5:2 as you are allowed 1000 calories on the two restricted days. On the 5:2 it is just 500 :-( Needless to say hubby does better than me - Kitchen Pickers wear bigger knickers :-) There is a website for The Two Day Diet....

    Hope all goes well and may the sun always shine for you.... :-) :-)

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  • I'm so sorry Sparerib for your experience with this condition and I know your sense of humour covers much suffering.

    Your insights and knowledge have helped me regain my health... I hope that is some comfort - that by being admin here you have supported so many others. I'm so well now I dip in here out of interest... but without that addition of T3 I'd be really symptomatic again - I know because I went without for 3 weeks for the dreaded TSH test.

    I just wish everyone could find their own magic combo.


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  • You're always witty but the fact you are symptomatic and bloods don't "fit" you remain undiagnosed. They, according to the guidelines, don't take notice of any clinical symptoms. Will we ever again get doctors trained properly as medical students like Dr Skinner and others of that era.


    Extracts from Dr Skinner:

    I noted in the Telegraph and the Daily Mail a small paragraph describing a patient who had been undiagnosed with hypothyroidism for 6 years. They clearly do not realise that this is the least of it and I have used this opportunity to write to these newspaper highlighting the need to increase media awareness regarding this serious shortfall in patient care in the United Kingdom. You will find this under the Letters section. (added January 2011)

    1. March 19th 2013

    I think some people are a little mixed up and I don't blame them - between the World Thyroid Register and the Vaccine Research Trust.

    The Trust is a Charity which was founded in 1982 and I have been Chairman since then and is of course a registered Charity with a Board of Trustees. The one main focus during the last five years have been the problem of hypothyroidism and for example, it is presently financing a retrospective study of the Louise Lorne Clinic where we have been helped by a medical student to research and collate the data. This study should make a major contribution to alerting awareness to the present shortfall and care of patients with hypothyroidism from uncritical reliance on thyroid chemistry.

    Dr Skinner started his career in Obstetrics and Gynaecology then moved into research publishing extensively on herpes and other viruses, vaccine development and was one of the pioneers of research into the association of viruses to cervical cancer

    2. In his capacity as a Consultant Virologist at the Queen Elizabeth Hospital in Birmingham he was referred patients who were thought to have Chronic Fatigue Syndrome, Myalgic Encephalopathy (ME) and other problems thought to be related to viral infection; he felt that a number of these people had classical signs and symptoms of hypothyroidism and treated them with thyroid replacement with encouraging results. He then started working with a number of General Practitioners to address the possibility that there may be a group of individuals who have normal thyroid chemistry but are suffering from hypothyroidism. The British Medical Journal published a letter in 1997 from Dr Skinner and a number of General Practitioners bringing this to the notice of the medical world.

    3. Dr Skinner’s work involved a specific group of patients who have thyroid chemistry within the reference range but clinical signs and symptoms of disease; he argued that blood tests should not be pivotal in the diagnosis and treatment of hypothyroidism as they had never been validated as a marker of optimal health. Secondly, in this particular group of patients it was not known what their blood test results were when they were healthy therefore using blood tests as the only criteria for diagnosis was not sufficient.

    It must be emphasised that Dr Skinner was not doing anything new nor prescribing new medication for the treatment of hypothyroidism; patients were diagnosed and treated for this disease based on clinical signs and symptoms and medical examination before blood tests were established and thyroid replacement using natural preparations was the norm prior to synthetic preparations.


    The very last paragraph above is how patients were treated and recovered their health before blood tests/levo were introduced.

    The "guidelines" (from Wiki - Guidelines are not binding and are not enforced. Also, Guidelines may be issued by and used by any organizatio....... to make the actions of its employees or divisions more predictable, and presumably of higher quality). Nowadays they do not allow or permit treatment to clearly symptomatic patients who will be given medication for the 'symptom' but not for 'the cause'. So the suffering goes on, and on, and on.

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  • Really sorry you're feeling crap and angry. Don't blame you but carry on with the rant - were here to listen!!

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  • The only way I cope with this is not seeing my Gp. I had nearly 18 years of seeing consultants and not one recognised Hypothyroidism. Now no one told me it was Hashimotos I had to glean that info from blood test results. As you are all aware I've tried every combination of thyroid meds. I have a very real adrenal problem supported by tests. I refuse to go for blood testing, I buy my own meds. It can be a very lonely place.

    After 2 years of basic NHS treatment I wasn't getting anywhere. With confidence gained from this site I'm now on T3, it's not perfect, I've gained weight, but feel like I'm improving. When you see your swelling in the ankles and fingers you know you're getting somewhere.

    I've had to self diagnose and find an appropriate doctor for interstitial cystitis, Pa and Hashimotos. Like I've said many times I've had to take info in, written to my Gp and the best bit is when you take ticked lists of symptoms and you know they had no idea, that all confidence in doctors has completely disappeared.

    I won't put myself in the scenario you describe, it affects my mental health quite frankly, and that is very precious to me.

    I now just tell my Gp what I'm taking like it or lump it. I'm guessing one day this may catch up and I find myself struck off the list. Bottom line I have never been helped by doctors, harmed yes.

    You have to have the space to experiment with doses, can you imagine a Gp saying that. What kind of a doctor ignores symptoms?

    *swelling going down in ankles and fingers. I can't edit my post, soz.

  • I totally agree with Helcaster. My story is much like hers. I cannot imagine why an intelligent woman like yourself is still expecting answers from doctors! You must know you won't get them. You know more than they do.

    Take your health into your own hands and cut out the middle-man! Nobody cares about you like you do, nobody has as much to gain as you do, and nobody knows your body like you do. So, take your courage in both hands, stand up to your doctor and say : this is what I want and if you don't do it for me, I'll do it for myself! Might work, might not. But at least try to get some comprehensive tests out of him, for nutritional deficiencies, adrenals, etc. If he won't play ball, get them for yourself.

    If, as you suspect, your problem is rT3 - and it might well be - then treat it yourself. A high dose of T3 only - 100 mcg or something - for at least 12 weeks, should do it. You need to flood the receptors with T3 Γ  la Dr Lowe. You can do that!

    I am so sorry that you've got into such a terrible situation, through no fault of your own. But I'm pretty sure that only you can get you out of it Oh, and you're not eating enough! But you know that. It isn't what you eat that is making you put on weight. But you know that. With such a low calorie intake your conversion must be zero. And you must have a lot of nutritional deficiencies if that is all your eating. Get them sorted out. You will have to do that, because doctors know nothing about nutrition.

    Good luck, and much hugs, Grey xxx

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  • Gosh, Sparerib - I started reading your post and empathised with a lot of it. Then I got really scared and thought I must have written it myself in my sleep, and had somehow turned into Admin without knowing that either. I am not sure which of any of that is the most frightening.

    I get particularly narked at the inability to get to see a GP. I try to be sympathetic because I dare say they have targets, stress, blah blah blah, then remind myself that they are being paid well to do their job. Some of us <me> are unable to work because of how unwell we are. One GP I saw commented on how lucky I was that we could afford for me not to work. Very helpful.

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  • What a cheek the doctor has, in more ways than one.

  • (((Spare))) No point in waiting until you're really poorly, unless TSH is over range, GP will say it's not your thyroid. Has NDT/T3 helped at all?

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  • Thank you for your wonderful replies, I apologise for the rant...

    My yearly blood test was overdue so thought I'd come off self-meds to see where I am..... but didn't expect to wait another 3 weeks for an appointment!

    I think it just proves that the NDT/T3 was working, as I hadn't had one of these 'moments' lately!

    It didn't seem enough of a difference 'tho - but I didn't take the step of upping the doses (can't deal with the palps).

    I could go earlier & see one of the other 3 GPs - but as the last one asked if I self-harmed, I really don't want to (as you say Helcaster - GP visits aren't good for my health!). Well, one last try for the TSH Clutter....

    Airmed - Yes weight gain is valid - but I'm just no good at arguing my point face to face, often my mouth doesn't work.

    GG - Yes I'm just cutting down to prove a point - that I still gain weight! (of course I'm taking my vits!). Yes I know I'm stupid.... who wants a diagnosis anyway!

    Marz - Yes I'm going to do the saliva test next, can't seem to get my head around those adrenals, and there's lots of stress inc physical. Are those Olives ready yet :)

    Lisasahara - gulp! ((hugs))

    Thanks Shaws (will read up) Churchie & Beansmummy

    thank you all, (((group hug))) ... normal service resumed... Jane :D xx

    why have I got this on my mind with a GP visit?

  • Don't ever aplogise for ranting!!! We've got to have some pleasures in life! lol A good rant does you good, get it off your chest!

    And I would never say you were stupid! Didn't say that. And of course you're taking your vits, but are you taking enough?

    And it's not only a question of getting a diagnosis, it's also getting the right treatment - and enough of it! As you obviously know. Well, I always say one is best served by oneself... or something like that.

    Keeping fingers crossed for you.

    Hugs, Grey x

  • :)

  • Great to hear from you and wishing you the best with the preferred GP :-)

    Sadly no olives this year - we chopped most of the trees down earlier this year for the wood. ( Central heating oil very expensive here - even more than other places ) They have already grown back into huge balls of leaves - like BIG topiary type shrubs. I actually prefer it but in places we need some screening. We have enough olive oil to last a couple of years - so I will pop around with some later :-)

  • :)

  • So.. - do I wait now or do I get a new appointment with Dr/s x?

  • Jane, probably best to wait to see your preferred GP rather than the idiot who asked whether you self harm.

  • 12 days of Xmas to go.. not expecting a miracle 'tho

    I've never seen 'my' GP - there are 3 lights on the horizon.....

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