About two months ago, I got a phone call from my gp. I'd just done my annual thyroid blood tests. Once again, I'd messaged the doctor prior to the test to request my vitamins be tested. It was agreed they would be done at the same time as my thyroid bloods. At the blood draw ( yes in accordance with the recommendations here ) I was assured the vitamins would be tested.
For the third time in a row, they were not tested! This time vitamin D was but not the others.
My gp told me that she was concerned that T3 was slightly above range ( as expected ) and T4 had crept above range for the first time. I was told to reduce Lio. I refused. I have lots of symptoms of being hypo and refused to make myself worse. My problem is that I simply can not leave a big enough gap between taking my last dose of lio and the blood draw. Each time it makes me more ill. Hence my levels creaping up. I'm on 125 mcg liquid levo as I have an absorption problem and I am down to 47.5mcg lio - a high dose!! I explained this to the gp. I do feel that if she had been able to see that my vitamin levels are very low - they always are, in spite of supplimenting, this would have supported the fact that I am not over medicated. She wasn't interested. She ordered me to see an endo. I was extremely reluctant. She said she would request an urgent referral as I was over medicated. ( I privately thought - good luck with that! )
I have received three or four letters from my local hospital informing me of the time scale but adding, due to covid delays it could be longer. I last saw an endo at my local hospital ( Lincoln ) just before Covid struck. I'd waited seven months. I saw the head of department. He told me, " your problems are outside my field of expertise. Good bye. " That was it. so I did not expect much this time.
A couple of days ago I received a copy of the letter the endo had written to my GP. Not sure if it was a man or a woman by the name and I can find anything on line other than they are on a six month locum attachment starting last September. They have declined to see me. They however, recommend that I am advised of the risks of being over medicated - I am well aware of them already! Also that she reduce my levo by 25mcg and my lio in 2.5mcg weekly steps until my TSH is no longer suppressed and my T3 is back in range. The letter quoted my current dose but did not state that my levo is not tablets but liquid as I have an absorbtion problem. I, obviously have not been offered the opportnity to explain my many symptoms or why I believe I need my current doses. To be fair to my gp, I'm sure she wrote a very brief referral letter expecting me to be seen by an endo.
I find it incredible that clearly a diabetes specialist can give a recommendation without even speaking to me. Her / his opinion must be based on an extremely brief referral letter which I'm told stated I am over medicated. My mum always said, " one side is always good until the other side is told". Certainly that is the case this time. I haven't as yet, heard anything further from my gp. She must be aware that I will refuse to reduce my meds any further. Google tells me I am entitled to a second opinion before a gp can insist on reducing meds. Does this even count as a first opinion? I've no idea where I would get a second opinion. I absolutely will not pay to see a private endo again. I saw three in a couple of months after seeing the nhs guy at Lincoln. All stated they were experts on the thyroid and all really knew nothing and were clearly diabetes specialists. One's advice was so prepostrous, I refused to pay him!!
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dizzy864
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Thank you for your reply. Whilst I do agree absolutely with what you say, I m not sure how knowing my exact levels will help. I know they are lower than I would like. I have managed to increase vitamin D to a reasonable level but I m struggling with the rest. I have got up to 25mcg a day of gentle iron and am going to try taking 2 x 20mcg tablets soon and see if I can tolerate it.I take a high dose B complex and a high dose B12 every other day. I found every day caused problems. I m not sure what else I can do.
Not a bad idea to reduce levo a little....over range T4 has the potential to cause problems not least an increased risk of cancer.
It sounds as if it's T3 you might need....there is a lot of nonsense flying around about T3.
The problem is that it's the cellular level of T3 that counts because T3 doesn't become active until it enters the nuclei of the cells and attaches to T3 receptors. Serum T3 is inactive.
Cellular T3 cannot be measured ( except post mortem!!) so symptoms become very important indicators.
Some people hve a problem with getting adequate T3 into the cells ( myself included) called Thyroid Hormone Resistance. RT H. We need higher doses of T3 to ensure some of that dose can be "pushed" into the cells.....the rest is eventually metabolised and leaves the system.
Medics don't understand this....I had RTH dimissed by an endo because my levels didn't show a problem with my beta T3 receptor....the problem existed, but elsewhere in my thyroid system
Undoubtedly you need optimal nutrient levels but you also need a cellular T3 level that is appropriate for you.
I'm on 125 mcg liquid levo as I have an absorption problem and I am down to 47.5mcg lio - a high dose!!
I need just over 125mcg T3-only so 47.5mcg is not high if it's what you need
In your shoes I'd be inclined to reduce T4 to 100mcg and to raise T3 to 50mcg......this will inevitably need to be revised but it's a start.
I've self medicated for a number of years so have the flexibiliy to adjust doses myself......I had to give up on medics poor advice.
Good luck with that approach
It's all in my bio.
Overmedicated is an opinion if not backed up by scientific evidence.....your medics seem seriously short on that score!!
You might find this ebook very helpful it's available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton.
I certainly recommend it as an easy to understand read.
I'm so sorry you have had such awful treatment....they often know they don't know but talk nosense to cover their failings.
Can you try adjusting your dose meantime with the prescription you have.....to prove a point.
Thank you for your reply. I did ask one of the private endos I saw in 2019 if I could try T3 only. He readily agreed. But then said I should reduce levo by 100 MCG immediately then stop it altogether 2 weeks later, then 2 weeks after that reduce lio from the 60 I was on at that time to 45. I asked about blood tests and he told me no need as he had lots of patients on that level of lio!! That was when we walked out and I refused to pay him.I am concerned about reducing levo as I have been so much better since I went on the liquid. I was able to reduce lio to 47.5 MCG. But I do agree it's worth a try as I am definitely not tight just better.
125 liquid levo and 47.5 lio. I ve been on this dose about 4 years. Before that I was on 125 mcg tablets and 60 of lio. When I switched to liquid I became hyper and reduced lio by myself over about 3 months. I ve tried three times to reduce lio to 45 at the insistence of my GP. I quickly become very ill. The worst symptom is waves of ever worsening anxiety. I really can't take that. I never last much more than a week before putting it back up.
After a week your cellular T3 would start to fall without a constant adequate supply hence the return of symptoms
Your dose must be constant, frequent changes upset the system
Changing to liquid levo has likely improved absorption with the effect of you feeling overmedicated.....but poor conversion is not increasing T3 adequately
I'd be inclined to increase the T3 to 50mcg and that should consequently reduce both your FT4 and TSH....see how that works
Anxiety is a text book example of undermedication....in your case likely low cellular T3
Your GP is clueless but that is almost normal these days.....could he not see reducing your T3 was making you ill
Thank you so much for that. I ll increase T3 as you suggested. My GP is completely clueless. That's why she was so insistent that I see an endo. She can't see beyond my suppressed tsh. She won't listen to my symptoms because she is convinced I ve brought them on myself by taking too much Lio. Her predecessor, was much more helpful and knew a bit more too. Unfortunately she took very early retirement immediately after COVID struck. The GP before her was very much worse or maybe I just knew a lot less back then and had a great deal more faith in doctors!
Hi, I ve just finished reading the book. It's given me a Eureka moment. Every thing has fallen in to place. When I started liquid levo, I became hyper and I reduced Lio by 20 %. In some ways, it has helped but it also caused different issues. I feel a bit better but I m always tired and almost always got a headache. I really struggle with sleep, whereas I didn't before. I can be happily sewing, knitting or cooking and very suddenly I crash. I just can't go on as I am so exhausted. Many years ago I saw a newly qualified endo. I was taking 20 mcg of Lio in the morning. I was getting tired in the afternoon so I asked about taking more in the afternoon. He told me to take 20mcg three times a day for three months and see how i got on. It was amazing, I was well for the first time in years. When I went back I saw the endo in charge. He told me to stop Lio completely immediately! I ve been arguing with doctors ever since. I now understand why I was better. It lasted seven years and then I deteriorated a lot. It also explains problems in my family. My daughter and myself both have migraines, one of my sons has cluster headaches and premature baldness. My daughter has lots of hypo symptoms and her bloods are abnormal but within range. My mother was ill for ten years before she passed. She had smoking related issues but we always thought there was something else going on. There are lots of other issues in my family but as yet only my older brother has been diagnosed with hypo.I have reduced levo slightly. When I notice the affect, I will increase Lio. I will gradually make the change to Lio only. I ll also change to taking Lio once a day. I was considering this anyway. Splitting the daily dose into thrée has worked well for many years but I am needing my afternoon and evening doses earlier and earlier.
Hospital specialists and consultants do this all the time. They can just refuse to see you with some instructions to the GP to do certain things. Happened to me in regards to the Covid clinic.
I have tried to get referred to an Endocrinologist several times over the years. I have never achieved it. One GP told me she certainly wouldn't refer me because 'I wasn't their kind of patient' and I had the wrong antibodies, whatever that means.
Many years ago (probably about 15 or more) I asked my GP whether I could have hypothyroidism he said “Oh you don’t want to be going down that road”. I was too polite and ignorant to ask him what he meant. Now I know a bit more, I realise that hypo treatment was already going backwards and probably caring doctors were being stifled at that time. Still he should have had a proper conversation about it.
I can see that hyperthyroidism has a more clear priority for immediate attention but hypos need attention if perhaps in slow motion.
Also definitely got the impression when I finally was told that I was hypothyroid “Not a patient who needed referred to an endo”. This has persisted. They really don’t like us.
No they really don't. They think we're simple. Or they want to believe we're simple because it all gets rather more hard work when it's not. I was also told endocrinology would just send the referral back, and doctors don't like it when that happens.
It's frustrating. Yes hyperthyroidism is dangerous but so is hypothyroidism! I certainly have had blackouts off meds and was ony way towards myxedema coma and actually can no longer be off medication for longer than two weeks. I struggled to be coherent and nearly got run over by a bike last year after less than ten days off meds. I make stupid decisions and feel suicidal when undertreated on Levothyroxine only.
Yes I forgot for a moment. I slept last night and did in fact feel almost ‘normal’ for part of today. Unfortunately I cockily ate a bit of chocolate brownie. So I am paying. I am my own worst enemy . I should recall but ……. my ‘forgetter mechanism’ kicks in when I feel better.
No need to apologise! I actually edited that last part out but it seems I didn't complete the edit properly! I know you completely understand everything, honestly this is why I really should stand by my rule of not posting in late evening early mornings!
Alanna very much me too in all respects but you did make me laugh too. It’s either that or cry, although I find that more difficult these days. Somehow that particular relief is beyond me.
Lol I'm glad you understand the hypo-witching syndrome that descends between twilights and full moons. Where one writes posts that appear coherent, satisfying and fully justified, only to return to it in the afternoon after daily medication has settled in and insomnia has worn off, and then review your posts and not understand why you caused such drama or how you even did so and whose spelling is that?😄
But if you find it funny....at one point off meds I was at Oxford Circus underground. I have been there a bazillion times before. Of course the entrance is at street level and you walk down the steps into the station. I'm standing there outside H&M in a state of bewilderment, watching people disappear suddenly and not being able to work out how they are disappearing, and where is the entrance?
No, “whose spelling is that”, is funny. However that ‘out of place and out of time’ (I think of it as) is scary. I feel at my most vulnerable in those situations. I just carry on now, saying to myself, it’s not me, it’s the condition. That condition that no medic seems to give a hoot about! It’s weirdly comforting to know that I am not the only person making an idiot of myself. It’s just that in many scenarios, human beans are so judgemental.
I got stuck in a bending movement, same in a reaching moment both times in a supermarket. Just as if I turned to stone. Once for what felt like ages. No pain. Just stuck unable to move.
There are no end to the shades of hypo it seems. And doctors seem to be the least empathic people about it all.
I'm envisioning you stuck partway through a an attempt to lift something in the supermarket and me coming along with a complete understanding that you might need a push and just silently helping😄. (I know it's not funny at the time and pretty anxiety provoking I hope I haven't offended!)
I get this with a leg or an arm sometimes. Strangely it was one of the first weird signs that manifested itself. I would find my leg would just get stuck and either not bend or unbend and it would happen with one of my arms too. Hopping along with a leg that would be stiff as a stone and watching my bag slide off my shoulder to the ground unable to stop it. I think it's some sort of cramp or nerve signal delay. I don't know, I take magnesium everyday now to help with the muscle cramps.
I was told once by a consultant in A&E that neurology sometimes look at the brains of thyroid patients because there can be changes there, but getting such a referral through the NHS would be impossible because neurologists are concerned with severe brain injuries and illnesses.
I think if the brain is deprived of thyroid hormone there will be 'short cuts' and/or efficiency pruning that affects how nerve signals are received maybe? I don't know.
Yes, we definitely need to stick together, no one else understands us or more seriously, will outspokenly support us, save one or two doctors willing to risk their careers. A ridiculous situation to be in, in 2024.
Doctors seem to think if we have many odd and random symptoms it can't possibly be due to the thyroid. It has to be down to something else. Once the correct answer is eliminated, people suffer and the correct answer is never found. The only explanation I can come up with for this is that doctors are all scared of going near thyroid problems. Are they too complicated for them?
I think they're not doing the hands on doctoring they used to, relying way too much on blood test results and not even taking note of individual and family patient histories these days anymore and yes, it is now too complicated for them. It might not have been 40 years ago, when doctors spent more time on checking physical symptomology over tests. Now the detailing of symptomology seems to have become the preserve of the naturopaths and is afforded almost occultic status, and stigmatised over 'more scientific and accurate' blood testing.
An example: When I was pregnant with my second baby, just over twenty years ago, an elderly doctor checked my cervix with his fingers (not the done thing now, and not necessarily a comfortable procedure) to work out how far along my then early pregnancy was. He was accurate within a couple of weeks. Nowadays easily and quick available scans as well as policy changes (possibly justifiable policy changes) mean no doctor needs to know how to do this manually, although possibly a midwife still could, I have no idea, so technology as well as changes in policy may result in down skilling.
So you have a chronic, systemic metabolic disorder? What's a standard double appointment length with a GP? 20 minutes? 15? Should you even still be evaluated by the GP once original diagnosis has been made? Or by an Endocrinologist? I don't think a man of all work GP should be tasked with it.
So what are you going to get in 15 minutes by a GP unless you are being evaluated by someone already very conversant in thyroid disorders specifically, who can cut to the most pertinent things to know?
Are you going to get a previous medical history, questions about your memory, your attention and focus, your periods, comorbidities, your vitamin status, your gut health? Will they even check your basal temperature? Will they know anything about the Hypothalamus pituitary adrenal/thyroid axis? That this is probably also now unreliable and faulty. Low adrenal hormones? Cortisol? DHEA? How menopause vs premenopause, low progesterone, oestrogen dominance can affect thyroid function, allergies, food intolerances?
No. No and no.
When I saw Dr W at Wigmore street years ago now, (no longer practicing which is a loss), I got a full hour, and he even went over that time, because he was so concerned with getting as much information as he could. Naive me did not appreciate then, how good a doctor he was. He asked detailed questions about my pregnancies, my family history, my childhood illnesses. My asthma, how often I used my asthma medication, my cholesterol, my sex drive.
None of that is going to happen in a GP appointment. Never has for me anyway.
You re absolutely correct. I have never had the opportunity to sit down and discuss my symptoms with a GP. Possibly because they don't have time to listen but also because they are so convinced that their tests can only give the right answer. If your health and how you feel is different to the test results then you must be wrong, mistaken or liing. The test can't possibly be wrong. A few years ago, I complained to my GP that I had lost the outer section of my eyebrows and had lost all hair under my arms. A clear indication that I was under medicated and not over medicated as the test showed. His response was, "of course you have if you pluck them like that. Try not to pluck so far in next time." I was speechless for a short while then tried to tell him I hadn't plucked them. He would not believe me! I don't entirely blame GPS. We don't know what we don't know!! Their training is sadly lacking. Like my GP they believe they don't have to know everything as that's what specialists are there for! Since COVID created huge waiting lists GPS are struggling. I have no time for specialists as a little knowledge is very dangerous especially when they won't admit their lack of knowledge.
Hey I felt the love. Thank you. If only we knew people were better disposed towards us. I finally got over myself and got a wheelchair - and help - to go to my nephews wedding. I always remember someone saying that if you had MS (I don’t) once you are in a wheelchair that’s it. Well I have a friend with MS and she has to use her wheelchair sporadically and I only need to use it for very stressful interludes like flights. I have not travelled by train for along time. The London Underground eeegh.
Shortcuts, that’s an interesting view. Mmm.
Yes the NHS and their ‘stand’ on this is positively medieval.
I'm sad to hear you require a wheelchair at all, but having had the days when literal walking is nearly impossible, I completely understand why and yes, acceptance and adaptation to wherever we are in this thyroid miasma is essential. I appreciate you saying you had to get over yourself and admire it. I need to get to acceptance in many respects still myself. I often do not look overtly ill to others, so conclude immediately that there is no good disposition towards me on the part of others and it would be wrong to use a walking stick for e.g. even when doing so would gave prevented me going flying on the pavement and driveway on more than one occasion.
Yes, awkwardly, many of us do look like we are perfectly ok. My sister and one of my daughters say to get a stick. They think people will at least take some note. I have just as big a problem coming to terms with that.
I have told this story before. Whilst I was getting treatment in Antrim Hospital (nephews wedding) someone called out my name and I put up my hand. The nurse came over to take more blood and said “I am sorry, I have been looking for an old woman”. Very nice but it just confirms what we all deal with. Keeling over in public. Holding on to something like grim death when we feel faint or an episode of vertigo, weakness or paralysis. I have to say I have never had help other than my husband picked me up one day in the front garden - very public. This used to happen to my mother (never treated) who was sure people thought she was drunk.
Just the other day really set this thing - ‘we look ok’ - when I was introduced to a woman with no thyroid at the local thyroid group. I just about fell over when she said she was 82 and I said so. I thought she was a lively ages with me - not so lively 72 person. She certainly seemed ‘well’ too. Others are perhaps not so ‘lucky’ but falling over in the street, or the fear of it is debilitating in itself.
We must stop exchanging war stories. It’s amazing that doctors are glibly unaware and apparently uncaring about our plight,
I used to have frequent waking faints. Horrible things. The last time it happened my husband couldn't bring me out of it. He called an ambulance. I kept telling him not to call an ambulance but I couldn't make him hear me! He called one anyway. I think that actually helped as I was taken a little more seriously after that
They definitely don't like us. I was diagnosed over 30 years ago. When I listed my numerous symptoms every doctor told me classic thyroid problem. We LL do a test to confirm. Each time it came back "normal". After four years - the last two attending a menopause clinic in spite of being only 41, I was referred to a gynecologist. He could find nothing wrong with me but looked at my latest thyroid test results. He decided that was causing my issues and put me on levo for six weeks to see if it helped. I often wonder what would have happened had he not been willing to help me. What's shocking is over thirty years later nothing has changed.
A huge part (it seems to me) is that we, good people, expect honour in our dealings with medics. Instead we are dealt with, at best, as Alanna012 clearly says “They think we are simple”.
I have been around long enough to know that none of us are perfect and my experience has resulted in the observation that there is a sort of ebb and flow in every human. People who think they are intelligent often have huge gaps missing in the human experience. The missing part is called ‘emotional intelligence’.
Our system of training doctors seems to rely heavily on drumming in facts. Unfortunately these facts tend to change over time, as new research is added - which they clearly don’t keep up with.
Too many medics just can’t, or are too lazy, or just too incompetent to read other human beings. I think that’s a massive mismatch between what the patients need and want and our eminent medics.
It’s why medicine is described as both science and art.
How right you are. Doctor's must be treated as one step down from God. They always know best and must not be questioned! They are always right. It's us patients who have got it wrong. It can't possibly be the doctor. I really wish it was true. then we would not have to suffer or in many cases go it alone.
Completely agree. Could not have put it better myself. It's facts, facts and more facts. Nurses are delegated in healthcare for any compassion surplus to requirements.But here's the weird thing. When I go in to the doctor armed with facts, it's often not appreciated. I cause offence. I really haven't worked out what you're meant to do.
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Results of Writing to Dr (Not Great!)
CCG refuse to prescribe T3
Snail mail or is it me?
My appointment has been moved!!!
Update on T3 endo appointment 🤦♀️
