As you've probably guessed, I'm a tad over-excited because I saw my NHS Endo yesterday and after some discussion (discussion ONLY made possible due to the information I've picked upon this site), he agreed to give me a 3 month trial of T3.
This was remarkable as this was my third appointment with him - my first was in August 12, when he said that all of my thyroid tests were normal and "whatever your problems are, they're not caused by your thyroid, or your endocrine system, so I cannot help you. I'll let your GP know and he'll probably refer you to a neurologist." I left his room in tears.
My GP referred me to a neurologist who said that I had 'a lot of symptoms' and said that he wanted me to see a psychologist to "discuss my illness". In the meantime I would be sent for an MRI scan to rule out MS and an EMG to rule out "any of the myopathies and motor nurone disease". At this stage I had refused anti-depressants from my GP on numerous occasions.
I was diagnosed as hypothyroid three weeks later, on 20th September as I presented to my GP with unbearable 'scream out loud' cramps and the most awful swellling on my face and neck which he finally recognised as a problem (photo attached). FT4 <1 (11-25) TSH 50.8 (0.24-4.20), CK enzymes 1370 (<200).
I was admitted to hospital for an MRI scan and psychologist's appointment on 3rd October. They completed the MRI and the Consultant Neurologist came in with his four Registrars who told him that I'd been diagnosed as hypothyroid two weeks' previously. He looked at my test results and you should have seen what happened next - it was like a Whitehall farce! There were Registrars running all over the hospital! He was shouting "when is a thyroid diagnosis not a thyroid diagnosis? When you're this poor woman! Why did they send you here? Look - this woman must be feeling dreadful with results like this - are you sure this TSH score is right? Cancel the psych, cancel the EMG - I'm not putting this lady through those - she's hypothyroid, for goodness sake - she doesn't need a psychiatrist or needles put into her muscles!". Get her GP on the phone! Much hilarity!! He asked to see a copy of the referral letter from my GP. He didn't let me see it, but he did say that there was "some mention of somatic illness". He discharged me and told me not to let my GP send me to a psychiatrist! What a waste of NHS funds - I was in that hospital for 2 days.
I saw the Endo again in on 11th December, by which time I was on 200mcg of Levothyroxine but feeling dreadful - if not worse than previously. He asked me to wait 3 months to see if my situation would improve and if they hadn't he'd see me in February.
Yesterday, after taking me through the (as we all know, flawed) NHS thinking behind the 'normal ranges' for thyroid testing, I asked him how he knew that they were 'normal' for me. He blinked at me for a bit and then said that the ranges for thyroid were 'suitable for 95% of the population'. I asked how he knew that I wasn't one of the 5%. He said that with my results at FT4 22 (11-25) and TSH 0.27 (0.27-4.20) I was in the 'normal' range. I said that I'd much rather be in the optimal range - for me. He blinked again and rolled his chair away from his desk and crossed his arms.
He asked if I had been reading up on my condition and I said "Of course. Wouldn't you if you were diagnosed with an illness?" He said "Yes, I suppose... The internet? "Not exclusively" I said. I quoted Dr Toft from the BMA book regarding the fact that wellbeing is sometimes only achieved when THS is suppressed and FT4 in the higher range - possibly as high as 28-30 - he interrupted me to ask "what book?". I pulled my copy out of my bag and said "the one that's available in most High Street chemists". His reply was astounding - "Oh, I've not seen that before. Can I have a look?" and flicked through it for quite a while before saying that it was interesting...
We countered back and forth for a while - with me dragging up information gleaned from this site in a miraculous fashion. Somehow my brain fog allowed me to remember things when it was important! I didn't quote from Dr. Peatfield's book - I just took it out of my bag and rested it on his desk with the title facing him whilst he was looking at Dr Toft's book! He eyed it sideways...
He said that "even though it is VERY, VERY unusual that patients do not respond to T4" he'd agree to "a trial of triiodothyronine together with liothyronine to see if that made any difference". I said "aren't they both T3?" (thanks SO MUCH Rod for the explanation the other day) and he said "no, liothyronine is T4". (Yea gods!) I said "no, that's Levothyroxine, surely" and he got a tad flustered and picked up his BNF, flicked through it and said to himself "Oh, yes, they're both T3 - they've got different properties, I'm sure - why is that then? Oh yes, liothyronine is the brand name... that's it... yes. Let's do you a trial, shall we? I'm not sure how much to start you on.... what's the starting dose? Let's see. Shall we start at 10 mcg twice a day? Yes, I think so. Best split into two doses."
So, I pick it up tomorrow as it had to be specially ordered by the pharmacist. I am very aware that this is just a trial - and it may not work for me. But I do know that I'm more fortunate than most in that he is willing to give me a trial. If it turns out not to suit me, then I'll have to think again.
I'm sorry that this has been a long blog (and it's my first, lol!) but I am so very grateful to everyone on this site for helping me so much. Six months ago I knew nothing about thyroid issues - and I've been 'lurking' here since September. This meant that yesterday I was able to have a forty minute in-depth discussion with a Consultant, who knew that I knew that he was 'toeing the party line' in terms of what they tout as 'effective' thyroid treatment in this country. Happily, he looked quite sheepish when I left. Bless!
Thank you all (for your help but also for your patience in reading this blog!)
Photo above is how I looked 2 years ago. Photo attached taken on the day of diagnosis in September 2012. How could my GP not see I was ill? Beggars belief!
Karen.
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RoloHibbs
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Thanks - but from what I've read here, no worse than lots. Looking back now, with what I've learned, I think my mum had undiagnosed thyroid issues. Plus some aunts.
Your endo must have been thanking heaven that it is GPs who are now going to be subject to regular validation - otherwise he'd have to know something about thyroid hormone medicines!
Now, I guess, he realises that all he has to do if he doesn't know something is ask his patients. Well, if they all put on such a performance as you seem to have managed.
Thanks Rod... Now I have to get my head round when to take my two doses (I take my Levo at night)... Stand by your beds and prepare for a question coming next :-).
He might like to ... but wait til he's back. You are amazing. And thank you for doing that. Do you mind if I were to show your case to my MP? I have written to him and have been in mail contact with his secretary --- odds on for a meeting ( expressed this would be the best way). Hope I don not have to wait long. Well done - wish I too had been a fly on the wall.
Great news!!! I wish I could have been a fly in the wall!! Well done.... That's the way to do it...proud of you
You can still take ur Levo at night if it suits you best. I take my t3 as soon as I wake up, then wait an hour or so for brekkie. My next dose I take at 2.30-3 ish . You will find what suits you best x best of luck with the t3 and I hope you find sOme relief from your symptoms soon. Well done again
Karen x x
Maybe we should submit a gallery of 'before thyroid' and now hypo/hyper photos to the GMC..... I did this to my GP.... He was a tad shocked to say the least!!
Thank you! Oh, he came out with some corkers - never heard of B12 being an issue with thyroid; shrugged when I mentioned the 'big 4' b12, iron, ferritin, D3; just take Levo in morning before breakfast. You don't need to wait an hour - 30 mins is fine, aaaargh! Oh, and I think a photo gallery would be a great idea! K.
So far as I am aware, the "usual suspects" or "big 4" have developed as a sort of concept right here.
Certainly the original ideas have come from all over - but as a shorthand for them, well, I think it possible we rolled it up ourselves. Now it's smoking.
Thank you PR. Interesting to see the shine on that lady's hair, never mind the reduction in her swelling - astonishing. Yes, my GP referred me to Endo as he said I knew more about thyroid than he did, as he had only had a day on the thyroid when training!!
Hello RoloHibbs, I heard it was half a day for the whole endocrine system.Can't be true! Ridiculous as it sounds it does seem that way when I read your story.
So pleased you have come through this with humour. You have been amazing with such patience.
I have destroyed my photos did not want to be reminded .Ordinary aging is enough to contend with. It is an idea though...... to show Doctors a photo of ourselves when we were Well ...enclosed in a Dr Toft book or similar.
Best Wishes for the T3 trial. I too hope to try it.
Oh my goodness. It just beggars belief. I am so angry on your behalf. Looking at your photo anyone can see that you don't look well. Any doctor worth their salt should have been able to give a diagnosis of Hypothyroidism just by looking at your severe facial swelling, and taking your other symptoms into account.
Well done for handling the situation so well. Many of us with thyroid issues become nervous wrecks when trying to argue our case, and the way you challenged your uneducated doctor was quite brilliant. When reading your blog I was actually punching the air saying YEEEESSSS!!! (presenting the Toft book was classic!)
I so much hope the T3 works for you Karen, But remember there are always other options if you don't get along with it. Best of luck.
Ahhhh, thank you! As for the nerves - you should have seen me when I got out of there! I was shaking head to foot and had a three hour hypo-nap when I got home At one stage my mouth was so dry I suffered the classic "top lip sticks to the teeth" moment... So fetching! Lol!
Thanks Polly3 - I hope he does!! Numpty is such a lovely word! I wonder what the collective noun would be? Thinking hat on, because there seems to be a lot of them around...
Absolutely fabulous! I wish I could do what you have done - you are quite remarkable. Considering how poorly you are you are absolutely marvelous, actually. What on earth will you be like when you get better again? Go for it, girl!
Yes, a GP can prescribe T3. Mine did. However, many (perhaps most) GPs either don't feel confident to do so, don't even know it exists, or don't believe anyone ever needs it. So a referral to an endo might be the best you'll get from the GP if asking for a trial of T3.
I have only just found your wonderful blog. I laughed and I cried and I wanted all of us to march through London, waving banners, suffragette style and actually show people what a force we could be, (if only we felt well enough!)
In the last week I started on T3 only and for the first time in years am feeling tentatively hopeful that this is my answer. I have tried everything else. Good luck with your thyroid journey and well done for reducing the endo to a snivelling heap. Incidentally, his words and attitude sound horribly familiar to me. The "I have done all I can for you" dismissiveness. His name doesn't begin with a G does it??
Hehe! I LOVE the idea of a march, but like you say, as we all feel so awful, it'd be more of a stagger and with my hypo deep voice, I wouldn't be able to do much cheering!! Glad to hear you're hopeful on T3 only. I'm doing a reduced dose of my T4 plus T3 and have taken my first doses earlier today... Everything's crossed! K.
Will do Val! I'm not there yet - still got the hideous four stones to lose but have lost some of the swelling round the face and eyes, thank goodness. I'll get a photo taken later. K.
Fantastic blog - that endo must have been quaking in his boots by the time you left I would have loved to be a fly on the wall Good luck with the T3. Xx
Oh you poor thing- what a nightmare for you, So pleased that you have been able to sort this out even though you should not have had to go to the lengths that you have done to get there, Best wishes for your future. You must post a photo of how you look following the corrected treatment. x
Karen, well done you! I know how difficult these discussions are with the medical profession - They aren't used to people questioning their knowledge & skill, which no professional would like.
When you start the t3, please bear in mind that it may take time for your body to adjust and for the t4 to completely leave your body. I felt even worse for the first 8 weeks. Also if you haven't already done so, keep a list of your signs and symptoms now and how they change, (this is good evidence for yourself and medics), include if you can basal temperature, pulse, weight and blood pressure).
How frightening to think that you had to fight for your treatment in this way. To have to know more than your doctor and probably your endo as well. It makes me very frightened.
I think you should send your blog as a letter to "Thyroid UK" so that they can use it to support the very brave "Scottish Parliament" ladies. It says so much more than just our thoughts.
I do hope you get better on T3 and don't have to fight your corner any more if it doesn't.
I think you should send your blog to all those who are supposed to be "helping" thyroid sufferers. It is a perfect example of the ignorance there is on the subject.
Thank you Ellarose. I'm more than happy to, if it would be deemed acceptable. I did ask him if he'd heard of the three fantastic ladies who had gone to the Scottish Parliament to petition for better thyroid treatment. He hadn't. As we were sitting in the local renal unit, I told him that (amongst many other things) they questioned why there were so many treatments available for diabetes and only one for thyroid. I suggested that he Google the video. Bet he doesn't.
Perhaps it would be better to start on a lower dose of T3 eg 5-10ug. 20ug per day is a bit high and if you are only getting a 3 month trial you want to try the dose that is most likely to have the best results so that they don't conclude that T3 is no good simply because you are on more than would be optimum.
Oooooh, maybe I should have read this about ten minutes ago when my husband came in with my prescription!!! I had downed my half tablet (10mcg) before he'd got his coat off, such was my haste! Fingers crossed. If it all goes pear-shaped, I'll adjust dose. Thank you so much! K.
Let us know how it goes, love.... we're all rooting for you... Please please and thank you so much for your information, I'm sure there are loads of us printing it out for our next appointment with super (not) GPs all over the land..
Thanks so much Redditch - much appreciated. I was apprehensive but I've been humbled by the incredible response. I've actually had 14 years of being 'knackered' - I used to tell my GP that I was suffering from 'can't-be-ar*ed-itis'. I was given many spurious diagnoses and tests (Meniere's/ dermatitis/migraine/peri-menopausal/menopausal/4 colonoscopies/3 endoscopies/globus hystericus/IBS/depression/ incontinence/high colesterol/high blood pressure/hysteroscopy/ hysterectomy) and in hindsight (isn't it a wonderful thing) I can see that all of my symptoms have been hypo. But my tests were 'normal', therefore not thyroid!
My point was, and remains, shouldn't one of those doctors have looked at my symptoms holistically?
(Steps down from high horse and returns it to stable...) Ha!
You look like I did about 4 months ago. I have not been so lucky as you and have to source my T3 therapy from Mexico. Not sure if any one else has suggested this but do read Paul Robson's book - Recovery with T3. He takes you through the journey and everything he writes I can validate. There are other issues that come about as a result to being hypothyroid such as anemia, vitamin D3 deficiency and low cortisol output (adrenal insufficiency). It would be well worthwhile asking your GP to test for these conditions. I am sure other people have given the same advice.
Congratulations on the T3 treatment and being able to maintain a sense of humour. I found taking it 3 times a day was better. Started on 10mgs 6am, 12.00 noon and 4pm and felt like a light bulb had been switched on.
Oops not awake ye! I wrote mgs and of course meant mcgs. Watch out for symptoms such as headache, breathlessness and rapid or fluctuating heart beat. Only thing I noticed is that my heart did beat a little faster but then I cut down to 10mcgs twice per day. I did also ensure that my system was free of levothyroxine (3 weeks no meds was as long as I could go).
It took nearly three months but I am taking 25 mcgs three times per day and nipping up to London for some blood tests before making any further decisions.
I'm so glad reading up on your condition has meant you've managed to get a chance at better treatment. It's great news you've got a T3 trial. I hope it works for you.
Good for you I truly hope you get better and they work for you. Hopefully the endo's will convert themselves and take us all seriously. Still waiting for my appointment to come through to see endo privately. Good luck.
Thank you for sharing with us. I'm so pleased for you and my goodness you handled it so well! Would have loved to have been a fly on the wall. Well done and all the very best.
this just shows the power and effectivness of this site ......i bet you feel like you should have entered into the medical proffesion----but then again your obviously far to good for that ........just think how many others on this site that you can help with YOUR advice and YOUR experience-------that is real people power.........take a blue peter badge and at least 3 brownie points.......WELL DONE GIRL ....keep the faith ,we may at sometime re-educate some of these nonsensical so called 'DOCTORS' that seem to believe that they are one step down from the almighty,but,never realise that they are only human like the rest of us......but then again i won't hold my breath.we all hope you are feeling better and your major problems are now behind you . all our love always ....alan
They say the blood tests follow on after the symptoms. One look at you should definitely said 'hypothyroidism'. Fingers crossed that you get well soon. That's the problem with blood tests, we aren't lab results and doctors should diagnose as they did before blood tests and use their judgement and experience. Leaving a patient ill for so long is inexcusable and costs the NHS a fortune in referrals to other specialists etc.
Well done you and what a story, good luck with the new medication....and we go to the same hospital!!! I have been know to take my books in and various articles too ...almighty thanks to the Thyroid Uk forum...our paths might cross!! All the very best
What a wonderful blog! It's fantastic to hear of "patient power" at work. You did a brilliant job. Well done you! When you are well again would you consider submitting your story as a case-study to Thyroid UK for their website? No pressure of course, but if you do decide to here's the link thyroiduk.org.uk/tuk/get_in...
I look forward to the next instalment. Please do let us know how you get on
Thanks CarolynB. Yes, I'd certainly be up for that! - Unfortunately my blog only relates to the past 6 months or so - I first went to my GP complaining of feeling tired and listless with no energy in 1999 - there have been all sorts of shenanigans going on since then! If it wasn't so serious and it hadn't made me so ill, it would have made a fantastic sitcom - "Hypo City - NHS employs its vast budget and considerable might to convince woman she's barking mad!
Hello Karen - I've really enjoyed reading your blog - well done and good luck with your new meds hope it all works out for you. Do keep us posted how you get on.
I totally agree with you regarding the confidence this forum gives you.
well done you. why is it we have to suffer and end up in hospital before they believe we are normal, just hypothyroidal. hope it all works for you now. best of luck
Ah, thanks Shaws! Unfortunately, since Monday, I've remembered things that I'd forgotten on the day, lol! But that's the nature of the beast, I suppose. I watched your video on TUK web site the other night for inspiration before I went, so your comments are so incredibly welcome. I did mention the Scottish Parliament petition and referred to the number of diabetic drugs available versus just the one for thyroid, but he didn't comment. K.
have you heard about the petition going to the scottish parliament? Perhaps you would be a good example for how the NHS is failing in the diagnosis and treatment of thyroid patients. Especially if T3 makes you better. Keep a photo/symptom log.
I am very interested in the petition going to the Scottish Parliament. I was diagnosed with Hashis in 1979 when I was 16. I took levothyroxine for 8 years (from age 18 to age 26) before I started putting on weight - although it started about the same time I was put on the Pill. I have now put on 10 1/2 stones and I am told by my GP to eat less, exercise more and join WeightWatchers. I have tried all sorts of weird and wonderful diets and supplements, but nothing has worked. I will be 50 in a few weeks time and I feel lucky to still be able to work, but I am so exhausted and living in a 'brain fog' that I worry that I won't be able to keep going for much longer. I would be pleased to make any contribution I can to prevent anyone else living the life I have had.
Not surprised that you put on weight when you went on the pill. Same thing happened to me. This again is due to lack of knowledge by the doctors and thyroid patients should be warned about the effect the pill will have on them. estrogen causes your thyroxine binding globulin levels to increase therefore your total T4 levels increase (looking like you have plenty thyroid hormone) but as a result your free T4 levels decrease and you become hypothyroid putting on weight. My TSH went up to 18 as a result of going on the pill. But I think the pill still has an effect on weight even when your TSH is low (personal impression) as I lost weight when I came off the pill.
Well, I never! I'm still on one pump of Oestrogel daily and have been since hysterectomy in 2008. Must go see how much oestrogen I'm putting on my arm each morning... Oh, and I plan to get something off to the Scottish Parliament hopefully tonight but certainly before the deadline on Sunday. And very last thing... I'm on day 2 of taking T3. Have taken one 10mcg dose this morning. I haven't had any palps or headache or anything - would you recommend I drop to 5mcg for a few days anyway? Many thanks, K.
I find it takes a week before I feel the effect from a change in dose. You should stick with what you agreed with the doctor until you can speak to them again if you want to change it. Maybe give it a week or 2 on the 20ug and see how you feel. If you start to feel worse maybe think about talking to your doctor about trying a lower dose of T3.
I think if other hormones are imbalanced it can affect the way your body uses/stores thyroid hormones. I think this is not taken into consideration enough by doctors.
So pleased for you, I really hope the T3 works for you
I had a recent experience at my last endo appointment, where I went away feeling triumphant, leaving behind a very confused endo registrar. Still waiting to hear what my endo's got to say. However, I did feel sorry for the people in the waiting room, about to be fobbed off by him
I think if can all go in there with this knowledge and print to back it up, sooner or later the endo's will have to know their stuff! x
I really hope so Denise - nobody should be made to feel the way I did after that first appointment. I sat on a bench outside and sobbed! We always have great hopes for these appointments - after all, we wait so long for them - but when we're fobbed off, it's rotten. And it's happening time and again to people. Wonder if your registrar told your Endo or kept his confusion to himself? We can only keep up the fight!
What a wonderful story,I do hope the T3 works for you.I am currently 'softening' up my G.P for T3 & he almost said he would add the test this spring but he thought it was a red herring'I have been hypo for many years & have learnt more in the last few months from this site than ever before.Mary Solomon's book is very good too(not sure of spelling)
Brilliant -just Brilliant!!!! I really enjoyed reading your blog and I will admit feeling the satisfaction when you politely put your Endo to rights and your GP will be cringing when he reads the Endo's report -am sure the letter will be politely scathing -you should ask for a copy you are entitled to -am sure it will make you smile!! i am sorry though that you are having to fight so hard -a long while ago i learnt that this was the only way to be - be way more knowledgeable then the docs ( presently not very difficult! lol) -then let them dare try to challenge you! So far when this has happened to me they have backed down purely because they can't give a reasoned medically evidenced reply that justifies opposing. Am always polite and deferential though. Power to the patients!
Good luck I hope that the T3 proves to be successful in your return journey to health -you more than deserve it xx
ps: have you got Paul Robinson's book -Recovering with T3 ? Very useful book to refer to.
Bless you heart for what you have been through and well done for all your courage and perseverance.
I hope you'll feel better soon and regain some sense of normality after all what you have endured with the 'somatic' GP.
It's a great blog and a joy to read. I bet most of us had a laugh as it is amusing just picturing the Endo's responses.
Well done and I wish you success. Another neglected patient whom doctors couldn't diagnose by her symptoms (which Dr Weetman has named Somatization Disorders) thus not doing a blood test.
Before you know it, you will have a degree in the 'workings of the thyroid gland' and be able to advise your own patients.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I wish you all the best in your T3 trial.
decision made...
I got T3 on the NHS! But now what???
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Surprised Dr Anthony Tuft in Pulse article says TSH should not be suppressed when taking T3/T4 combo?
I knocked down the wall
