read this...: nahypothyroidism.org/thyroi... i... - Thyroid UK

Thyroid UK

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read this...

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nahypothyroidism.org/thyroi...

i have printed this off, and am taking it to my doctors on monday... i may get thrown out lol... but its me and probably most of you on here? i have hilighted the parts where my doctor is totally proven wrong on my print out... lots of hilighting i can tell you!

20 Replies
shaws profile image
shawsAdministrator

Good link, thanks. As all doctors appear to be blinkered with regard to dysfunctions of the Thyroid Gland, except if someone is on the point of collapse with Myxedema Coma or hyperthyroid. Many remain undiagnosed and unmedicated, to the detriment of their health as a the doctor sticks to the guidelines i..e no prescription until TSH is 10+. Whereas in other countries it may be a TSH of around 3+.

It puzzled me that doctors couldn't diagnose me, despite my symptoms but on this forum, it is frequent. Myself I had so many consultations (some private) to get different diagnosis all the time. My saviour was a First Aider who suggested 'thyroid' and he was proven right. My GP said who phoned me at home 2 hours after my blood test 'who gave you the form for a blood test'. I said I requested it myself. My TSH was 100. Then another journey began with levothyroxine.

in reply to shaws

just been round to my sister in laws.. she has hypothyroidism.. i didnt realise, she is having the exact same problems as me, and most on here... has there ever been any peaceful demonstrations or public petitions as a rebellion against this shabby , disrespectful and negligent treatment we receive from doctors who just dont have a clue about this issue?... its a disgrace!

in reply to

not just doctors, but the whole system.... its our bodies, we know how we feel, we know what we want... and that is what is best for us, and respect in the surgery... mediation and discussion would be nice,.. not a lecture or a tut, or an bloody anti depressant!

shaws profile image
shawsAdministrator in reply to

You can become a member of Thyroiduk.org.uk that was started by Lyn Mynott in her front room and then moved into a Garden Shed. It costs £20 p.a. and we also get quarterly Harmony magazines with info. She has given evidence at the Scottish Parliament who were asked to investigate the way we are diagnosed/prescribed. The more members the stronger we become as a unit with a voice.We had a great Conference in 2014 with good speakers three of whom are medically qualified.

Procedures are going on all the time of which we are unaware in TUK.

thyroiduk.org.uk/tuk/member...

Lyn is at the forefront of trying to get guidelines changed so that we are diagnosed and given thyroid hormones that suit us and not ones that suit the medical profession, after all they don't have hypo.

thyroiduk.org.uk/tuk/About_...

thyroiduk.org.uk/tuk/newspa...

radd profile image
radd

martine,

It is great you are reading this because for some, the only way to get proper treatment for our conditions is to self educate, but don't expect your GP to understand it all. They are only general practitioners after all.

An assertive but respectful approach as always helped me.

Good luck.

in reply to radd

yes radd, i totally agree... my original doctor did admit to me he was stumped.. and sent me to an endo.... who DIDNT admit he was stumped... i respect my doctor more, and we go back a long way... he knows me, my journey of the last year, so am going to talk openly and honestly, and calmly, (without crying if i can!) and ask him to keep his mind open, and work with me... and help me to feel better.... he has sent me for several tests, including a gi and liver specialist, and spleen scan as i get pain in my chest... so he is doing what he can... i just want him to believe i am still hypo even tho am 'normal' lol.... i want him to point me in the right direction... i dont want to waste 20 years like the author of sttm....

sulamaye profile image
sulamaye

Good article because it gives sources!

Glynisrose profile image
Glynisrose

Your doctor is honour bound to read anything you take him.

greygoose profile image
greygoose in reply to Glynisrose

I wonder how many of them know that... lol

in reply to Glynisrose

really? thats good to hear... i truly dont think he realises that levo doesnt work for some ppl because of conversion and reasons behind that.... my way of thinking is... dont rely on my body to convert t4 to t3... why would you?, after all, my body is broken in some way... so dont take this action for granted...

in reply to Glynisrose

I took literature to a 6 month rotation locum GP at my surgery who was very interested and he said he would research and use it . I liked him, damn shame he moved on. He was the only GP who said he wanted my TSH down to less than 1.

I wish I understood half of it nday be it is my brain fog... Maybe the language. Lol. All I know is that I have had woeghts issue all my life and that I finally believed that there was a correlation between my thyroid issues and my weight issues. My cholesterol has always been high for the past 15 years and I have to have the perfect diet to avoid high tryglicerines but was told many times I needed to be more consistent and that was not connected to my thyroid because my TSH was in the "norm". Oh well! It is so hard to feel validated and reassured with such a condition. If it were not for this site that I found 2 weeks ago, I would be even more depressed than I usually feel on a good day. Thanks for sharing and I wil read it again once I feel more awake. Lol!

in reply to

without hope we have nothing... and knowledge is power... hope u r ok...

Pamanda profile image
Pamanda

I found this article fascinating, like you I've printed it off and highlighted salient points! I have issues with my body's energy production, namely the mitochondria are not working properly. Given that thyroid hormones are actively transported, ie they need ATP, this article helped me to better understand the physio-biological processes going on and that I CANNOT think myself better!

in reply to Pamanda

ah yes, i was reading about mitochondria... wow this is all so complicated, but fascinating... i think when we educate ourselves we get a bit of confidence and power back... all these things need to be examined... we get shoved aside and told to have a nice weekend.. yeh right...

maggi999 profile image
maggi999

My muscle pain and fatigue has been a bit easier for the last couple of months, I wonder why? Could it be because I am self-treating with T3??? Wow, who would have thought it!

I'm going to e-mail this article to the Endocrinologist who laughed at me when I told her that there was a high correlation between poorly treated hypothyroidism and fibromyalgia.

in reply to maggi999

i truly believe fibromyalgia is a symtom, as cfs, of an illness... am i correct in saying that they have not always been an illness in their own right???

i never had tingling as bad ,not in the first few months of diagnosis,,, but now, because the t4 is crap and not working... i believe my hypothyroidism is basically being un, or undertreated to the extent i am deteriorating!

yes i am ... and i am printing out many more... i woke up this morning and thought... what if they stop listening, and decide i am a hyperchondriac and a time waster? what if i dont get the tests and that once in a million chance meeting with that special person who knows how to trreat me ?? ... then i will be forever in no mans land, in limbo... and left out in the cold, buried alive.. no one believing me!!!! i almost felt like i was going to decline into a vegetative state... all knowing, all seeing ,but no one listening , corresponding with me, and leaving me for dead! it terrified me.... am sure others feel as i do?

ahh , thats interesting you have antibodies to lymes? i was poorly 2 years ago with a massive rash and bite on my leg, i was a great walker then.. before i became an old knacker lol... and i ended up in bed for a few days feeling poorly,... my partner wanted me to go to the dox, but i laughed and said you dont go to the doc with a midgie bite... but this was no midgie.. my leg was a mess and the bullseye rash round the bite... so i asked my doc earlier this year to test me for lymes... which to his credit, he did immediately... came back neg... but i have read that if you have had lymes a while, it can be sneaky and hide in the soft tissues? is that correct? and more extensive ttesting is needed... hope you feel good now, and i bet it was fanbloodytastic to meet someone who believed you and agreed you werent depressed? my doc has tried twice to give me anti deps... i told him no way.. not getting that label unless i AM depressed... its a cop out ... thankyou for your reply and stay healthy...

dr wilson as in wilson syndrome? yes i have read about him.. some doctors dont recognise wilson syndrome. its about your body temps? mine are low and could be a reason for hair loss...among the many other things ...

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