I wanted to share something. As some of you are aware, I had my Levothyroxine reduced just over 7 years ago from 150mcg down to 100mcg purely on the basis of the TSH. At the time I had only basic understanding of my situation as a post-total thyroidectomy patient.
I had been quite well on 150mcg, working (2 jobs part of the time) and leading a normal life with only some pain in arms and legs which I accepted in my lack of knowledge. I had a medical at the age of 60 and was given a clean bill of health with a healthy cholesterol level of 4.7 and no cardiovascular problems, just slightly overweight but not obese.
Then a relocation and a change of doctor changed everything.
In November 2005 my levo was reduced. I protested that I did not 'feel' overdosed - I should know, I was thyrotoxic at age 18! But he insisted and so I complied. In January 2006 only about 8 weeks later I had a series of TIAs (Mini Strokes) and they were happening every few weeks. I went to the doctor and he checked my cholesterol. 9.7! He put me on Simvastatin, blood thinners, PPIs (my stomach could not cope with the blood thinners) and as time went on the mild and occasional asthma I had suffered since my early 20s turned into constant fighting for breath and I had to use two kinds of inhaler, and anti-histamine tablets. I was unable to sleep so he gave me amitriptyline which I never took. I had IBS so he gave me Buscopan which did no good so he gave me strong codeine. One year I went on holiday and I had constant complete loss of bowel control and was taking codeine every day just to enable me to go out. He sent me for a colonoscopy which revealed no underlying disease. Next I started to become agoraphobic. Then I became depressed because not only had I put on three stones but I was unable to walk and was suffering intense, unremitting pain in my leg muscles. This was continuing with my visiting the doctor every two weeks or so with a new ailment. At one point the pain in my legs (far worse than hypo pain I had had for 27 years or more) was so bad that I went to the doctor and asked to go to hospital. When I told him what was happening, he said to stop the Statins as they were in danger of causing Rhabdomyolysis. I stopped the Statins and my cholesterol (which had fallen to 4.8 - nearly as low as before he reduced my thyroxine!) rose again, to 10.2. I was having terrible palpitations and rapid and irregular heartbeat (sometimes up to 190bpm) Never once did the doctor ever suggest it could be connected with the thyroxine reduction. He was happy because the mini-strokes had stopped. Never mind that I could barely function.
I was now nearly 4 stone over my ideal weight and severely depressed. He offered me anti-depressants which I refused. I knew that it was time to do something, I had aged 20 years in seven! At that point I found Thyroid UK. I read all I could and started to tell the doctor I needed more thyroxine, to no avail. I bought Dr Toft's book and took it with me last December and absolutely insisted that he increase my thyroxine. He agreed to an increase to 125mcg.
Within 2 months I started to lose a little weight, my constant bowel problems were starting to ease, my cholesterol went down to 8, my breathing improved, I was no longer depressed, I started to sleep better, I even managed to do some housework. The palpitations were still there but usually no faster than 150bpm.
Good news, you might think? No. The doctor was unhappy with my low TSH and suggested I go back to 100mcg. I refused, in fact I said I should go to 150. No way! he sent me away with a flea in my ear, but not before informing me that the chest X-ray he sent me for because of my constant cough had revealed that my heart was enlarged. Coupled with the results of an earlier investigation which showed I had Mitral Valve Prolapse. With this in mind he was not prepared to risk giving me a heart attack just because I didn't like putting on weight. I came home and looked up the possible cause of my heart enlargement. High blood pressure? Never had it. Smoking? Never did it. inflammation? no. Under treated hypothyroidism? Bingo.
Now to today. Over the three months since I saw the Doctor I have decided to increase my medication very, very carefully just half a 25mcg tablet every few weeks. My palpitations have continued but gradually lessening, going to just over 100, still often irregular. but much, much better than they were.
I am now back to 150, this is only the third day but I have had more energy, much happier, my breathing is much better (I have had some wheezes in the last week or so but that is normal for me at this time of year), I have so far lost 9lbs and I can see a difference in my face. My total medication now consistes of: 150mcg Levothyroxine, Clopidogrel and Lansoprazole, plus antihistamines in the summer and an inhaler some of the time.
If I stop having the irregular heartbeat I shall try to stop the Clopidogrel and then the Lansoprazole. I will be back to where I was before the doctor tried to kill me. The next step will be to see Dr BDP to see if he feels I could take some form of NDT because I still have some muscle pain and my weight loss has stalled.
My private blood tests which I had done in April reveal that I am converting only at a ratio of 6:1 so that although my T4 is high, my T3 is fairly low:
(This was when I was on 125mcg Levothyroxine. And the doctor wanted to reduce it again!)
Truthfully although I know there is a way to go, I feel very happy and grateful that with the advice and knowledge gained from Thyroid UK, I have started on the road back to health, I will be able to live again before it is too late. I feel now that there is hope for me.
Thank you, Thyroid UK.
Written by
marram
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A truly inspiring post......Shouting it clear to me !! I need to take hold of my Thyroid understand it, learn from it & gain more knowledge to assist when dealing with professionals & self.
It is our lives which are at stake. I know now that I would be on the road to heart attacks or strokes and likely one would have been fatal. I have too much to live for to allow that to happen.
Many have a similar story, I think you are right about the T3. Thanks for reading and taking the time to comment XX
Marram
You are such an inspiration to us all. Your journey has been horrific at the hands of so called professionals that know dangerously little about our condition and are more like robots that sit at a computer and check the often not totally factual computer screen and read from the NICE guidelines. I for one am taking my thyroid care into my own hands now and will do a great deal better than they are "allowed" to.
Hugs and blessings for your return to a better quality of life
I'm so pleased you've decided to see Dr Peatfield. I can relate to your experience with my GP. Dr Peatfield is worth every penny to get the help you need. He saved my life. You probably need T 3. Anyway good luck.
What a lovely story, so glad you didn't take no for an answer, it's scary to think where you would be right now if you'd just accepted what your doctor told you! Thank you for sharing, there is hope out there! X
We dp know our own bodies. If only we did not have to fight to have that recognised. Thank you XXX
I'm so pleased you're getting better - what a shame you were forced to go through all of that - so unnecessary. Hoping the future is even better for you! xxx
It was not only unnecessary, but the doctor could have saved a small fortune in tests and investigations, medications and consultation time! Until he reduced my thyroxine I had been one of those patients the doctor only sees when he calls her in for a review!
I see nothing but better for the future, because I am determined on that! XXXX
A very inspirational story - thank you very much for sharing it Good luck with Dr BDP - I too think you will find the final piece of the jigsaw to be some T3 in some shape or form. Look forward to hearing how it goes. xxxx
I am pretty sure you are right, Clarebear. I will certainly do an update. My blogs are few and far between but when I have something to share, I am very forthcoming!
Thanks for your kind words. XXX
thats a truly horrible ordeal to go through but I am so pleased you are finding your way out. That doctor should be facing some sort of disciplinary action, its disgraceful that he was so ignorant of your condition and just went ahead and made it worse. I am always amazed that when faced with a condition in which they are not experts they can't do what we all do and research it.
It is so strange that the very few doctors who really are helping their thyroid patients are being persecuted! The GMC would likely back my doctor to the hilt.
Hi,, thanks for this ! Just highlights the danger of focusing on a single reading,, the tsh.. Your ft3 ,, the actual thyroid hormone is no where near being hyper . It's a blessing to know you.
Thank you, what a lovely comment Ianessex. Aren't you on Thyroid friends, my friend? Ian...Essex....OOOh, what a giveaway... greetings from fishlover XXXX
Marram, I am 'on the run' (ie I have extremely little time to dedicate to reading on the forum lately) but wanted you to know: well done for your commitment in getting better
and: my bloods were exactly like yours in the past, I went onto T3 only (was on NDT) and was on T3 only for a year, now just reintroduced some NDT to my T3, my 'guess' is that you may need NDT with T3 added onto it, not just from your results but from your symptoms. Am happy that you will discuss things with BDP so that you can agree on the road ahead x
I must admit over the years I have read widely on the thyroid subject and managed to forget it instantaneously. But I think it may have been in a Mark Starr book or a thyroid uk paper on their site.
Marram, this is such encouraging news, thanks for posting. Would be great to have it on the main website too, as we really need positive stories like this to encourage and bring hope to others.
Here's the link to submit it in case you woul dlike to. No need to re-write, simply copy and paste into the form and select the relevant 'permissions' statements.
Why, or why do we have to put up such a fight to get an adequate dose of thyroid gland hormones.
This is an extract from Dr Lowe:-
It’s tragic that millions of patients such as yourself suffer needlessly for years because their doctors prescribe extremely small doses of T4 products. I advise all patients such as you to persuade their doctors to prescribe a product that contains both T4 and T3, such as Armour or Thyrolar. I also advise them to see to it—one way or another—that they take a high enough dose for it to be effective. Otherwise, the patients are almost certain to continue suffering.
Patients’ doctors often make matters worse for their under-treated hypothyroid patients. They do so by prescribing drugs to control the patients’ continuing symptoms of hypothyroidism. Almost invariably, the drugs have adverse effects, and these complicate and worsen the patients’ hypothyroid symptoms. So under their doctors’ influence, these patients begin their fall down the conventional medical spiral that has ruined the lives of scores of millions of hypothyroid patients.
You asked, "Should I do something else?" If you want to avoid that downward spiral and recover your health, the answer is a resounding, Yes—you should do something else! Either persuade your doctor to treat you effectively, or find another one who will.
Before the TSH came in the normal was between 200mg and 400mcg (of NDT). Also, if not getting better on levo we should be allowed to trial an alternative.
It seems that, for most of us, being forced to go private makes us recover our health.
I am glad that you are beginning to feel so much better.
Thanks so very much for your post, it was such a relief to read it. I'm beginning to feel like a hypochondriac as my symptoms are piling up since I was dropped from 175mcg to 100mcg just before christmas and have been on a downward spiral ever since. After a few weeks of feeling really down and having a depressed time over xmas, I had a phone consultation with my GP in March and I told him I'd upped my meds to 150 again as I had a packet of pills spare and was feeling so much better. He asked me how long I'd upped my meds for and when I said a few days he told me i couldn't possibly be feeling better as the drugs take weeks to give that sort of effect. He told me it was just in my mind and therefore refused to let me go back to the original dose - all this on the back of my TSH level as this was all that was tested.
I've worn him down now and he's agreed to send me to an endo (just to stop me complaining I think?) so I'm going in a couple of weeks and can't wait! I'm nearly two stone heavier than before he dropped my dose and feel 10years older than a couple of years ago. I'm going to print off your post if you don't mind and take it to the endo and tell him this could be my story too.
It's great to know that you're coming out the other side of your nightmare and very best wishes with your treatment. Thanks again for posting, it's been a real help to me and reassures me I'm not going mad. x
With your experience have you thought about responding to this, as I could not do this myself as I have never consulted a specialist.
Dear Member
I am forwarding this request from NHS England to all members of TPA in the hope that you will be sufficiently interested to to join Clinical Reference Groups (CRG). They are recruiting to the Specialised Endocrinology Group which would include treatment of Thyroid disorders.
“CRGs are responsible for providing NHS England with clinical advice regarding specialised services, and for promoting equity of access to high quality services for all patients, regardless of where they live. CRGs are also at the forefront of the drive to spearhead innovation, working with clinical leaders, patients and suppliers to identify and promote best practice; scanning the horizon for new treatment approaches; and taking action to improve patient experience and outcomes in the NHS”
I thought I would send you this in case you wish to apply to join and get your voice heard regarding the ‘oh so necessary’ changes that need to be made in the present diagnosing and treatment protocol for those who are suffering with thyroid disease. You will find their application form here - engage.england.nhs.uk/appli.... Please mention that you are a member of the Internet Thyroid Support Forum Thyroid Patient Advocacy tpauk.com
Kind regards,
Sheila
You have been sent this email because you are a member of the TPA website and this email is from the official site administrator.
This is my first post - and I endured a similar problem after moving House and registering with a new Doc.
I have taken 150 mcg Thyroxine for umpteen years - was settled, working and healthy. New Patient - new Doc and told to reduce my Thyro. I knew no better - in fact had just retired and leading a far more relaxed lifestyle - it kinda made sense somehow. I just went downhill very gradually - probably exhibiting all the symptoms most of us now recognise. I was constantly making appointments and seeing different doctors. My TSH was running at about 4 ish - and I was reassured that was within "range". I had all kinds of ongoing diagnostic tests for digestive problems, xrays of joints - extra prescribed painkillers for my pain and ongoing unwellness.
But - for me - the worst was how my head responded. I had hallucinations, sudden bright visions of past events - from years and years ago - unprompted. Had suicidal thoughts - could see no reason for being here - which is so unlike the usually upbeat me. I had awful awful panic attacks - which I had never had before. Became generally very afraid - walked away from my relationship - the list goes on. Wanted to hide and die.
I had some blood tests taken when I was unwell with a tummy virus - which produced a TSH of 33 - and found another doc at my surgery with a bit of knowledge and sense. He immediately upped my T4 - and I am now settled again alternating 150/175 mcg thyroxine.
This event lasted two and a half years from reduction to wellness again. I have since made it my business to be informed and assertive - I will not allow that to happen to me again. You have my utmost sympathy !
Oh, Lindy - what a horrible experience to have to go through. In days gone by they used to lock women in mental hospitals for life when all they needed was thyroid treatment, but although myxoedema was known, it was not understood how much the mind was affected.
I was sent to the psychiatric wing of our local hospital when I had thyrotoxicosis, because the doctor refused to believe it was my thyroid, simply because I had had a partial thyroidectomy 12 years earlier. I was having hallucinations, too.
I have been very depressed and paranoid when my thyroxine was too low, but never hallucinated. I suspect if my thyroxine were ever stopped completely it could happen, though.
So many thyroid sufferers - hypo or hyper - have had relationships break down, it is a life-destroying condition. I have suffered from the age of 13 with Graves' disease which made me very ill, I had a partial thyroidectomy at age 18, then it became toxic again and I had a total at 37. Every single relationship I ever had broke down, until I was 47 when I eventually married. I had been stable until I was 60, and the rest you know.
I once said on Facebook that I feel as if my thyroid stole most of my life away.
Lindy, thank you for sharing your experience. You have my utmost sympathy, too
Ya know - even though I do a fair amount of lurking - and some posting - I really do feel this aspect of this illness is very rarely discussed. I understand that some may be reluctant to post about such weird happenings - and for me the whole process just progressed so stealthily - I got lost !
Practically - and very simply out - I understand that T4 assists in the distribution of oxygen around our bodies. That is why we suffer umpteen symptoms as muscles and organs are being starved of oxygen. It makes sense to me that happens to our brains too - I actually told my Doc my brain was "misfiring" - my thought processes became stilted, unprompted - I did not feel in control of my own thinking. Its hard to admit that - and even worse to try and explain to a disinterested doctor who is desperate to prescribe you antidepressants and get rid. I used to just sit and weep - then have a panic attack !
I now know that the longer I was underdosed the more symptoms I developed and the worse my mental capacity became. Its scary !
I guess we should be glad we surfaced eh ? I suspect there are many who don't.
Lindy, I so relate to what you've written here. In fact, I could have written your paragraph that opens with "But - for me - the worst was how my head responded." I experienced everything you mention, and yet my GP still wouldn't believe that the cause was insufficient thyroid hormone. The memory of the hell I was going through is still very, very painful for me, and I too "will not allow that to happen to me again."
Well said Sister ! As I have said in my reply to Maram - it puts us in a very difficult frightening place - I didn't want to admit it at the time - really I could not believe this was happening - I was very frightened too.
I have not seen this aspect of Hypo mentioned on forums before - hopefully by posting we can reassure others and offer some comfort now that we are well - and more importantly inform others that this can happen when replacement is insufficient..
It is an aspect of both hypo and hyper which really needs to be kept in the public eye.
Even in this enlightened age people are being locked up for hypo or hypothyroidism. There may not be a lock and a key but a pill can keep you prisoner just as well as a locked door.
I went through a bit of this too (but nothing like as bad as you), but was very fortunate to find TUK on the day of my diagnosis by my GP with "sub-clinical" (hated term) hypothyroidism. For me the mental/neurological symptoms were always the worst.
I was referred to an endo before any treatment was given, and he basically said that there was nothing wrong with my thyroid, and all of my symptoms were caused by health anxiety. This was when my TSH was 18.0 but fT3 and fT4 were just in range.
My symptoms were: terrible anxiety/panic attacks, feeling faint/strange vision, headaches, dizziness and vertigo, not being able to hold my head up straight, tingling in the top of my head, hands and feet, memory problems, feeling that I wasn't in my body, agrophobia - I went from being very outgoing and sociable, to not wanting to leave the house, and feeling that cold water was being poured over the back of my head. Basically, I thought my family would be better off without me and I thought it would be better if I wasn't here any more (although I didn't actually have any suicidal thoughts - just wished it would happen).
I had to beg the endo for a trial of thyroxine but he said it wouldn't help me (he was right but not for the reasons he thought). I wouldn't have done this but for the knowledge and support that I gained from this site and TUK. I felt as though no one believed that I was feeling so dreadful, because the endo had said there was nothing wrong with me - thank goodness for the support on here - it stopped me from thinking I was going mad.
To cut a very long story short, I am now on Armour 2.75 grains and am feeling pretty well. My TSH is suppressed, my fT3 is in the top quarter of the range and my fT4 is midrange. Most days I don't really have many symptoms, and I am getting on with my life. If it hadn't been for this site, I really dread to imagine what would have happened. I don't think I would be sitting here now with my family, enjoying life.
A good story, a good outcome, but how very sad that you have to take matters into your own hands.
It is shameful, because doctors seem to have lost any human kindness except for a notable few - who shall be nameless - but who pay a high price for their compassion.
That's great news that you are starting to feel better
Just a thought (I'm sure you already though of it), have you had your B12 checked? Low B12 can disrupt communication between hypothalamus and pituitary, causing a low TSH. Abnormal cortisol results can have a similar effect on TSH.
There has also been research showing that TSH is pretty much useless once you have been diagnosed with hypothyroidism.
Just want to say what an amazing response to this, from those who feel encouraged (wonderful) to those who are encouraging. Thank you to all of you for such moving and supportive comments.
I am learning that you can never take your eye off the ball with this disease, I am having a test for Graves' antibodies in addition to all the usual stuff at the end of June in preparation for my visit to Dr BDP in the hope that the last little bits of the jigsaw can be found. In the meantime I am taking COQ10 and Methycolbalamine in a spray, I will include a vit D test but I suspect I am probably OK there. The one which I feel could be low is ferritin but I do try to have a really healthy diet, so I could be wrong.
Last of all as I mentioned. I am coming round to the view that I need either a T4/T3 combination or natural thyroid, because of the poor T4:T3 ratio. We shall see!
Thank you Marram for such a clear account of your ordeal, made more horrendous because it could have been prevented. It is such a good idea to post your story on the main site as a reminder to us all of the dangers of being persuaded to reduce our medication against our wishes and knowledge of our own bodies. I've saved your story as I could relate go so many of the symptoms, which I'd forgotten, before I was able to reach an optimal dose. Good wishes for a full return to health.
It is the fact that it was totally unnecessary which is really so disturbing. If I, a patient without any thyroid, and with a very long history of thyroid problems (from age 13) have to fight to convince my GP that my symptoms are thyroid related, it makes me shudder to think what a fight most people on this forum have had to go through.
I wonder if one of the problems with their time limits is that they don't read your complete history through when you visit. They just look at the short term solution, which is to reduce the medication, maybe not realising that they are causing more problems than, as they see it, over dosing produces. I also wonder if the rigidity of the tests is all about the possibility of being sued. I always tell my GP that I will take full responsibility, in writing if necessary, for staying on a higher dose than she recommends.
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Following on from my last post….. 
what advice can my gp expect from the endo? 
Coming to the end of my thyroid journey
RESULTS FROM ADDENBROOKES for my daughter 
New results from Monitor my Health
