20 years later and I didnt know a thing

I am a new member and this is my first blog. Roughly twenty years ago after much consultation I was diagnosed with disthyroid eye disease, (very bad double vision). I was started immediately on thyroxine and my specs had prisms. Thinking back I had all the symptpms of Hypo, feeling cold, very tired etc, also twenty years before that I started to suffer from acute anxiety and depression which has blighted my life ever since. In all innocence I thought now that I have been medicated all will be well. Not so , about ten years ago, i developed Atria Fibrillation, had a heart attack and 2 minor strokes, two years ago I had an ablation of the heart.

Up until last October I was on 175mcgs of thyroxine per day when tested my bloods showed that I had quite drastically swung over to hyper. My dose now is 125 and I feel really rough. My vision is really bad again, emotionally I have been a wreck,muscle weakness and total exhaustion. Until I came upon this site I realise now that I knew nothing about thyroid disease and its impications and the suffering it causes, for instance none of cardiologists or Drs have ever told me that thyroid can cause AF. I am shocked but also relieved that I came upon this site, I really thought I was going out of my mind.

Just had another test today, T3 T4 AND TSH so I am quite uptight waiting for the results I realise I have a lot to learn and if necessary will see an endo privately because I feel as though no one is taking me seriously, anyone know of a good endo in the merseyside area? I would be really grateful for any advise

35 Replies

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  • Probably your TSH showed that you were really hyper, but did they test your T3? It's good news that you are having TSH, T4 and T3 tested this time.because the symptoms you are having sound like hypo. It will be very interesting to see how the results pan out.

    I myself had a total thyroidectomy at age 37 and was perfectly well on 150mcg Levothyroxine. I had a few issues with pain in my legs but I put up with it. At age 60 I had my thyroxine reduced to 100 and two months later had three mini strokes in succession followed by several over the next few months. Cholesterol rose from 4.7 to 9.7. I also noticed that I was getting palpitations and an irregular heartbeat. It was only when I found this site, 7 years later and now with an enlarged heart, that I realised the damage which has been done to me by that reduction in my dosage.

    I have fought my doctor and managed to persuade him to increase it to 125 and my cholesterol has already started to reduce, but the palpitations and irregular heartbeat have not.

    I cannot get the doctor to acknowledge that it was wrong to reduce the thyroxine purely on the basis of the TSH but he is totally refusing to do so. In fact, he has threatened to reduce it again because my TSH is suppressed and he says that is a pointer for bone density loss. If he tries to do it again, I shall demand a bone density test to prove him wrong.

    I have very sympathy for you, sorry that I am not in the Merseyside region (That's the area my mum came from, love it so I AM sorry!) so can't help you with the Endo.

  • Thanks for that Marram

    It sounds as though you have had a rough ride yourself. I find it quite scary that I know so little, I can only hope that I will gain confidence, but also am aware that maybe a little knowledge is a dangerous thing. Its a shame that the medical profession dont take more of a holistic approach.

    I think you worry more when you have a heart problem. I'm not really sure of what constitutes normal in the readings, or if there is such a thing.

  • I know how you feel, it took me 33 years

    Roslinxx

  • I should live so long!! Thanks Roslin

  • Hi jumpup - welcome to the site :) Sorry to hear about all of the problems that you have been having.

    Please can you post your thyroid test results on the site when you get them, together with the ranges. It will also be really good if you could get hold of any past results, particularly the ones when you dosage was reduced.

    It's unbelieveable, but unfortuantely a fact, that many doctors do not look at the whole picture and don't see the link between heart symptoms and anxiety (to name only a couple) and thyroid problems.

    Clare xxx

  • think you are right temp today--morning 37.1. pulse 85. this is after 8 days of increase to 31/4m.g. yesterday temp 36.6 pulse78. had good day monday. temp 36.8. went out. eve not good 7 pm temp36. 8pm 36.7 10pm. 36.8. feel real bad. taken no erfa today.

  • I would keep to try contacting Dr S for advice if I was you. xx

  • left 2 message . no reply. this is not good when you feel so ill. no good going to doctors. they got me in this mess.

  • It's very difficult to know what you should do - hypo and hyper symptoms can be vey similar. I still had a low temperature when I was over-medicated. Sorry I can't help any more. Xx

  • Maybe you've got no reply as he is due before the GMC (again) on 26th.

    Let's hope his restrictions will be lifted.

  • yes i know. lady phoned me at 1.30pm. said someone at door. i will phone you back in 10 mins. still waiting for her to phone. must have gone home now.

  • What should I be aiming at as regards temperature and pulse please? I am, at present, trying to balance my T3 and my nutri adrenal and both of mine seem to be all over the place.

  • Although I am feeling well, my temp doesn't rise above 36.4 even when I feel very hot. This is an extract:-

    Over the years, we've found that some patients’ low basal temperatures don't increase, or don't increase much, despite them fully recovering from their hypothyroid symptoms by using T3 or Armour Thyroid. Molecular and physiological principles lead me to a conjecture about the persisting low temperatures of these patients. We all have enzyme systems that maintain core body temperature by causing cellular energy to escape as heat. Thyroid hormone regulates the production of these heat-regulating enzymes. The enzymes decrease in hypothyroidism, leaving most patients colder. When the patients undergo effective thyroid hormone therapy, the enzymes increase and, in turn, so does the patients’ body heat.

    But the patient whose basal temperature doesn’t increase with effective thyroid hormone therapy is presumably different at the genetic level. The genes that code for the temperature-regulating enzymes in the patient are less responsive to thyroid hormone. As a result, her basal temperature remains low, as yours is, despite her recovering from all other indications of hypothyroidism.

    Whatever the reason for persisting low temperatures in any individual, we know such patients exist. For them, the basal body temperature is not a useful gauge of improvement from a particular dose of thyroid hormone. Because of this, we prefer to measure the resting metabolic rate, based on the patient's oxygen consumption at rest. This test is more reliable when done properly. But, of course, it isn't as accessible to patients as basal body temperature test.

    web.archive.org/web/2010122...

    There are other topics at the top of the page which may be useful although most of the links within may not work as it is an archived site.

  • Thanks Clare - Certainly will post results and will be glad of any help understanding them. Will see if I can get previous ones too. Ashamed to say I didnt pay much attention, just trusted the docs.

    If only the docs would take a more holistic approach, it would probably save the NHS millions, the downside of specialists I suppose

  • Hi Clarebear

    You suggested that I post my thyroid test results with ranges. I requested them today, you would think I had asked for the key to the Kremlin, I was told on the phone that my test was normal,so I asked for a breakdown of the TSH,T3 and T4 and said thatI would call at the sugery to collect a copy later this pm. The receptionist saidthat she would have to ask dr if that was OK. I called to pick up my copy and was told that i would have to wait. After half an hour the receptionist called me to the desk, and handed me paper with the following:

    23/4/2013 Serum TSH level= 1.1 mU/L original result 1,1mu/L(0.3-5.5)

    09/4/2013 Serum TSH level= 1.2 MU/L original result 1.2mu/l (0.3-5.5)

    Is the 0.3 - 5.5 the range? On both tests the T3 and T4 levels were requested but from what I can see yet again they have not done the T3 and T4 they were requested bythe community Matron who visits me at home regularly because of myheart problems. I am so frustrated where doI go from here? How are ranges decided? I feel at a complete loss ? Hope you can help

  • It is a sad indictment that people such as yourself suffer incredibly and have a ruined life because we did put such trust in our doctors .

    Unfortunately since the TSH became the way to diagnose thyroid gland problems trainee doctors are not trained to know or detect by symptoms.

    I only hope that you will now be able to now get the appropriate medical attention you should have had long ago although it will may not be enough to rectify some of your serious problem'.

    My TSH is 0.01 and some doctors would say I am on too much. The question they should ask when you are on thyroid gland medication is 'How do you feel' - not dose according to your TSH.

  • thank you for message. just wont to know where i go from here. i felt so near when my temps went up too 36.8 for 4 days. yesterday went down to 36,6, today 37.1. how did you get better, who helped you. what is your t3. t4 and t3. thinking how could i have gone over. or should i still keep to same dose. doctors only keep us ill, but we need help. i did feel well for 4 days. now ill. did not take n.d.t. today. was waiting for someones help me with advise. no luck.

  • See my reply re temp to mstp

    Thyroiduk.org helped me with the information it provided (before this forum began). I saw Dr P and Dr S but because I feel well now I haven't consulted them for over a year. Dr S referred me back to my GP but he didn't want to know so I am doing it alone. If I have a problem I will consult Dr S.

    This is a blog I did in 2010 but have moved on from then. Took T3 alone then added Erfa, Erfa alone. Tried some otheNDT but have now settled on T3 and Naturethroid.

    It is not an easy journey. Some do fine on levo alone but others like you and me have a struggle.

    I hope you feel better soon.

    thyroiduk.healthunlocked.co...

    The first answer on this link, I think is very useful. I now know what 'tissue' means. All the other topics are useful info too.

    web.archive.org/web/2010122...

  • Thanks for that , I will make a point of telling them how I am feeling in future

  • I'm sorry you feel so bad. It was interesting to see Bruce Keogh on morning t.v. today clamping down on the cosmetic surgery profession. Perhaps he should consider more the uneducated and set in their ways GPs and Endos in the UK? I am 45 in two months. I have suffered from parasthesia since age 14. At 22 I was diagnosed with my first episode of depression, which I have suffered with on and off to certain extremes since being told it was 'reactive'. At age 28 I was diagnosed with Grave's disease. At 33 I was diagnosed with Hashi's disease. I then too developed thyroid eye disease. Given that I had been on taking Levo you'd think my doctor would have realised what it was, but no, he gave me some drops, told me he couldn't see anything wrong and sent me on my way. It took a very old and experienced optician to tell me what was wrong (it only happened in my right eye so looked very strange). The only option to put it right, because of constantly fluctuating thyroid levels, was a total thyroidectomy. It wasn't until last year that I decided to take control and research this disease and I was astonished by what I found. I have now seen my endo, following a private appointment with Dr. Peatfield (Dr. Skinner would be nearer to you, in the Midlands) where I failed all adrenal clinical assessments, and demanded all the lab work suggested on the Stop The Thyroid Madness website (having them done on Monday, although they won't recognise the 24hr saliva test so am paying privately to have that done). If you haven't already, check out STTM, it's easy to understand (as easy as it can be with hypo brain fog!). Arm yourself with knowledge to take control of the illness and demand nothing less. Last year I was skipping heartbeats. Dr. Peatfield suggested I was t4 toxic. I told my endo I wanted to decrease my Levo from 125mcg to 75mcg daily and add t3 (as I think I have a conversion/absorption problem due to low cortisol), he agreed and voila, no more skipping heartbeats! What a waste of time and money all those cardiac appointments were. Now, given that when I was suffering from hyper it was chronic (I looked anorexic) my heart has already been put under pressure, on Monday my endo suggested I again increase my t4... I politely refused. Remember you must treat the symptoms, not just the blood test. Good luck. This is a great site and it's nice to not feel alone. x

  • I know what you mean about the diagnosis, three doctors were arguing about my eye condition, one thought I had a brain tumour, another sinus disorder and thank goodness the head of the eye department was called and I heard him yelling at them "Im telling you its her thyroid".

    Can you tell me the addresses of the two Drs please? You say that Dr Skinner would be nearer.

    Hate to sound thick but what is the STTM? I have

    been offered a further ablation of the heart but at my cardio appt last week the doc said it wouldnt be safe while I am hyper, and I quite agree.

    Thanks Nichola Jane

  • SSTM is an American site Stopthethyroidmadness and has lots of info too.

    stopthethyroidmadness.com/

  • thyroiduk.org.uk/tuk/news_a... This is the link for Dr. Skinner. He is of the same opinion and views of Dr. Peatfield and is based in the Midlands, which is nearer for you. STTM is Stop The Thyroid Madness, set up by Janie, a fellow thyroid disease sufferer. This is the link stopthethyroidmadness.com STTM also has 2 Facebook pages, one for the US and one for Europe and Australia. It's worth requesting to join the group. I would say that although it's good to get feedback and you do learn a lot, there can be so much information given at once and it is hard to decipher all at once. Take things one step at a time. Get your labwork done (look for the advised labwork on STTM) and go from there. x

  • Wow, what a journey you've been on Nicola-Jane. I'm glad you are getting sorted. The Dr. Peatfield that you saw, is he Dr Barry Durrant-Peatfield? I was diagnosed with follicular variant papillary cancer nearly 3 months ago and have had the right lobe of my Thyroid removed. I was started on 75mcg of Levothyroxine a week ago and I am researching my condition and found a book called Your Thyroid and how to keep it healthy by Dr Barry Durrant-Peatfield. I would like to meet this doctor, for an holistic approach to my condition, but I don't know where he is based, can you tell me?

  • I believe he is based in Sussex. I have his details somewhere, will find them and let you know.

  • Thank you.

  • These are the details I have for Dr Peatfield The Peatfield Clinic of Nutrition, 16 Southview, Warlingham, Surrey CR6 9JE Tel/Fax: 01883 623125

  • Yes it is the same doctor, author of this book. This is the first book I read when I began researching.

  • Thank you xx.

  • Hi Jumpup

    I was diagnosed with follicular variant papillary cancer nearly 3 months and I am amazed at the amount of information that is available about the thyroid. Keep researching and as they say, "seek and ye shall find".

    Good luck.

  • Thank you!!

  • Morning jumpup,

    like you this is my 1st week blogging, like you 20years ago I also thought "take the tablets everything will be ok now,!"

    continous problems over the years and being told by GPs "there is nothing wrong, go away and loose weight" wanting to cry with frustration, writing things down and they wont even read them.etc.

    BUT Having looked at the comments from others here I could cry with relief that I have found this web page as my GP wants to reduce my levothyroid, I didnt realise the dangers of reducing the dose.

    Like you I have a lot to learn about about this little gland that causes big problems and I am sure that with the help of such understanding co-sufferers and this web page we will prevail.

    Mary

  • Yes its really scary feel like I am walking blindfold! Thinking is so slow that I am having trouble even understanding some of the kind replies.

    Didnt realise that reducing the dose was dangerous mine has been droppedby 50mcgs over a short period of time. Ah well i'll just have to keep my wits about me, such as they are (ha).

  • The best treatment I have found so far is 10ug T3 with enough T4 to keep my TSH around 0.5. For me a TSH of 0.05 is too low (maybe even 0.2 is too low) and above 2 is too high. Taking hormones like estrogen can alter your bodies metabolism of thyroid hormone ie you need to take more. LEarn as much as you can and always get printouts of your results and interpret them yourself. Don't be scared to push for better treatment. Doctors don't know as much as they should about this illness and love to oversimplify it and do the minimum tests they can eg just TSH.

  • Also 25ug changes are too big when you get close to your target TSH.

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