I would love doctors to have the knowledge and expertise like the one in the following link::
No wonder he cannot take on any more patients (he's also in the USA).
A doctor many of us would like to consult. (he'... - Thyroid UK
A doctor many of us would like to consult. (he's not in the UK).
shawsAdministrator
Written by
shaws
Administrator
To view profiles and participate in discussions please or .
58 Replies
•
Thank you for this article. I am trying to work out why(I’m the patient trying to do the dr job) I have insomnia after falling off an ATV and literally landing on my head. I felt my brain shaking. My Graves is not quite in range but my levels are like 500% lower now than when I hit my head. I do not believe my insomnia is driven by the Graves and am trying to work out why do I have insomnia after hitting my head. It has been 17 weeks now since this accident. I look at my dog sleeping and think “you bastard, you have what I want” 😛
Did they x-ray your head after your fall? I hope so and I think if you still have problems that they should do one..
A CT scan was done. Nothing abnormal found. My blood was high and my Graves untreated at the time of this accident. I was riding on the draw bar of the trailer and my husband driving the quad bike. My husband misjudged the gap in the fence (we live on 10 acres). We made it through the fence gap but the trailer didn’t and I went over my husband landing on my left hand side of my head. The jolt from the impact caused my head to go backwards and then forwards. It out C1, C2 and C3 out so I ended up with a neck injury. I am 17 weeks on and my neck at C1 can still go out and be stiff causing the neck to feel sore. A 5/10 sore but enough to know when it’s not ok. The insomnia started from there. I have to be honest and say the last 3 nights I have got some better sleep. On 25 January 2021 I started PTU and my blood is almost normal. T4 is at the start of the range and T3 is just over the range. I did sleep with a T4 of of 84 range 10-22 and T3 45.8 range 2.0-6.0. It’s from the day I hit my head that the sleeping issues started. Thank you Shaws.
I am sorry you have had such adifficult time and insomnia means you aren't even able to have a decent sleep. I do hope everything resolves shortly and you'll be able to get a good sleep.
Thank you. It’s 4 months now since the accident. At the time of the accident my blood was so over range but in January I started PTU and now I’m April my blood is close to normal but the sleep is still elusive. On a good night I get 4 hours of sleep. To complicate matters I’ve been told I have PTSD so am trying to deal with these emotions. Thank you Shaws. It’s nice to know there is support.
Psssst Nikegirl
Look up cervical instability (neck) that has a hole list of symptoms from depression anxiety high blood pressure palpitations insomnia fibromyalgia tinnitus hearing problems neck mobility etc.Have been looking in to it myself past year and it’s very interesting.Came across a very informative post by Charlie_G and his condition chiari 1 malformation.Can cut and paste it for you to read.Was to a girl called Sal who is a having lots of issues and symptoms that doctor’s are saying nothing is wrong
nhs.uk/conditions/chiari-ma...
Now I’m not saying it is that all I am saying is with whiplash and head injuries there can be a multitude of different things appearing
MarieAtlas has a webpage regarding your C1 atlas.Have a nosy there too and read all the reviews.Even from doctors and chiropractors.It’s not mainstream but very interesting.Just keep an open mind
Let me know what you think?
Take care!
A CT scan was done. Nothing abnormal found. My blood was high and my Graves untreated at the time of this accident. I was riding on the draw bar of the trailer and my husband driving the quad bike. My husband misjudged the gap in the fence (we live on 10 acres). We made it through the fence gap but the trailer didn’t and I went over my husband landing on my left hand side of my head. The jolt from the impact caused my head to go backwards and then forwards. It out C1, C2 and C3 out so I ended up with a neck injury. I am 17 weeks on and my neck at C1 can still go out and be stiff causing the neck to feel sore. A 5/10 sore but enough to know when it’s not ok. The insomnia started from there. I have to be honest and say the last 3 nights I have got some better sleep. On 25 January 2021 I started PTU and my blood is almost normal. T4 is at the start of the range and T3 is just over the range. I did sleep with a T4 of of 84 range 10-22 and T3 45.8 range 2.0-6.0. It’s from the day I hit my head that the sleeping issues started. I read the article. Thank you for being so kind and I genuinely mean that for thinking of me. Out of all the symptoms I think I have the insomnia side of things and I feel my emotions more. No headaches at the back of my head. No dizziness or arm issues. I will keep this article though. Thank you
Hey NIKEGIRL
Not saying you are having the symptoms.There seems to be a lot of issues with head and neck trauma even down to low melatonin.You can get that from America if not on prescription.I got 10mgs and I’m in the Scotland
You have a deep resolve and protective family values within you.Stay strong! It will ease and you can learn to live and be happy again! It’s just finding the parts to fit in to your own jigsaw
God bless you and your family girl!
Hi shaws❤️Well that was very interesting reading👋👋.. this Dr should be re training endocrinologist, some of the content I have already had out with my gp as I have never seen an endocrinologist since before my thyroidectomy!! I've been left in the hands of my gp who has blatantly said he has no idea about thyroid conditions. But since thyroid removal in 2019 had me on and off T4, T3 since then, I took charge of my own health after slowdragon gave me some great advice, I have been steadily increasing my T3 medication as I'm not good on synthetic medicines, proved by a consultant twice when I was in hospital, I've now got to 30mg,will be increasing after next blood work in a week's time, then the endo wrote to my gp AGAIN recommending I come of T3 as it is not working for me, it clearly is as my high TSH is dropping, I had the old ref range argument with my gp, I told him everyone is different you can not umbrella ever person as having the same thyroid levels it's madness, as for this golden number we'll it doesn't exist, as you can guess I'm a pain to him. At the moment my calcium has shot up to 2.80...range 2.10..2.60..i had a pth of 9.5 its now 4.4 because I've been taking vitamin D 800iu daily recommended by the endo, he has wrote saying I probably have hyperparathyroidism, I definitely have, but he is dragging his heels in doing anything, all he does is give me blood tests every 6 weeks 😠 because my PTH has normalised he has now discharged me from his clinic, this is so unacceptable as the only cure for hyperparathyroidism is to remove the offending gland or glands, this is just keeping me ill as I have the symptoms of to much calcium, I now have managed to get an appointment with another endo but its not till July and its a phone consultation, I can't see how that will help as I want the endo to check the slight swelling on the right hand side of my neck😠.. But there you go Drs and endos not doing their jobs correctly and actually keeping us ill instead of tackling the problem the right way, I have an appointment today with the doctor, so they'll be plenty of questions for him from me😔😔
Thank you for the post I'm going to get it printed out, can I do that??
I would print an extra copy for the GP and highlight the relevant bits and sarcastically that would be the WHOLE lot. This was an enlightening website full of information confirming what a lot of us know and suspect
Yes, you can print it. 
If I didn't take T3 I would not be able to function whatsoever and I think I would have to chain myself to the hospital's railings. Or have an early burial.
Forget numbers connected to blood test results as I'm sure they vary throughout the day. It should be down to 'how WE FEEL' that is the priority - not to get the TSH somewhere in range.
We need T3 to run our whole body, with the brain and heart having the most T3 receptor cells.
It's is alright for Endos etc to follow their strict guidelines but we are 'human beings' an with autoimmune disease we didn't ask for.
I believe the BTA et all should reconsider than many patients cannot recover on synthetic T4. When I was newly diagnosed I was in and out of the A&E so often I think I should have booked a permanet bed.
Thinking back - I was discharged from the A&E as 'probably viral' a couple of days before I diagnosed myself after GP phoned to reassure me 'that your blood tests were fine'.
As I had ordered a blood test form when I was away from home I went straight back to the hospital, got a blood test and was phoned by GP who asked who gave me the blood test form. I said "I did". I was then told you have hypothyroidism - come and get a prescription. That's one thing I couldn't do as I was bedridden now with a TSH of 100 by then. Good job I had someone to collect prescription for me.
That was the beginning of another long, long hypo journey.
If we were wealthy I'm sure doctors would welcome us and prescribe whatever we suggested.
See if you can get GP referral direct to surgeon for the hyperparathyroidisn. Cut out the Endo
Hi lolajone♥️Thanks for the reply, I am honestly lost at their inability to see what's right in front of them, my friend contacted me about 6 months ago with awfully symptoms she thought it might be her thyroid,, as I have been through hyperthyroidism (removal of thyroid in 2019) she explained her symptoms I immediately said that's hyperparathiyroidism (I was diagnosed with this first in 2004) she had a calcium level of 2.83 she saw an endo who had her sent right to a surgeon and she had the parathyroid glands removed, she is doing very well, on the flip side I'm still here, having first being diagnosed in 2004, all they did then was blood tests which I never saw, I never asked for them.. Then I do now.. So god knows how long this as affected me, I have ostioporosis, ostiopein, passed kidney stones ect. And still they do nothing!!! I will try to insist something is done as this is affecting my thyroid recovery 😔😔😔
Your GP should be able to refer you to a surgeon but may not (mine wouldn’t). It may be worth requesting a surgeon referral from either Endo or GP in writing. Citing in a letter the NICE guidelines re PHPT, your results, your clear symptoms.
I do have a doctor like that, who gives me bioidentical hormones. He's in Italy, he prescribes me and I get my bioidentical hormones from Germany, as he doesn't know of any places in the Uk where I could buy them. In the 31 years I've lived in the UK, I find that medicine here is really stuck and doctors are manoeuvred by an old protocol and are not using their own judgments. Long live the NHS
I'm glad you've resolved your situation and are able to source the thyroid hormones that restores your health.
If they don't follow the guidelines the BTA etc lay down, they will lose their livelihoods unless they go private where patient pays for consultations and buy their own replacement hormones.
Many people are not able to do so.
I also know of a woman who left a letter for the coroner to read. It should not come to that in any country in the world.
We all blame the doctors, and I do, too, but in actual fact it is a computer somewhere that states what the numbers have to be. The doctors and endos upload your results and the computer tells them what to do. Doctors know nothing about it because they don't have to - the computer does it for them. Sad but true.
Did the doctors and the Endos check the power cord was attached to the computer and that the power was switched on. Seriously. THIS IS NOT AIMED AT YOU PERSONALLY😊
The lack of good old fashioned clinical evaluation!
I like your comparison .
All of our old-fashioned doctors could diagnose us - just by looking at us. Shaking our hand as we came into the surgery (were hands cool etc or pulse slow/too fast) and we got a trial of NDTs just by clinical signs. If we were improving we stayed on NDTs sometimes getting small adjustments up/down if necessary until we felt normal again and had no symptoms..
As we do if using our oven to make a cake - we select temp and we put a timer on. When we think it may be ready we have a look or use a skewer to make sure before we take it from the oven that it has cooked and that its centre isn't still raw.
Unfortunately if we tell GPs we still don't feel well we are usually ignored as our results are 'somewhere' in range and probably not optimal. Or they will prescribe anti-d's as we go to the surgery too often.
Yes - “Push yourself” one GP said to me, “you’ll get to do a full time job”.I could barely get out of bed..........
They have absolutely no idea of how symptomatic we can and no energy to do anything at all plus feeling very unwell.
Hi littlecandle♥️This is what I'm expecting when I see my gp today, everytime I have seen him he has his head buried in the computer flicking back and forth at my blood work, only on the 1st March did he actually look at me because I practically crawled in to the surgery for the appointment, he noticed how ill I was my voice was croaky I was sweating bad, I'm going through what is obviously hyperparathiyroidism diagnosed by my endo, who as discharge me from his clinic. I still have a calcium level of 2.80..range 2.10..2.60..im still fighting for treatment for this, I do have a appointment with an endo but its not till July and its a phone appointment 🤷♀️.. All my blood tests indicates hyperparathiyroidism they don't need to look any further or consult the flipin computer, they need to remove the offending glands, but no.. And they wonder why I'm at the surgery so much, this is unforgivable as I'm suffering with high calcium levels in my blood, what do they want,, for my calcium to reach 3.00 then I'm hyperclacimic, will no doubt be having a fight on my hands today... The last thing I need.. 😔😔😔
I do hope you can resolve your calcium problem.
If a doctor told me that 'your TSH is too low, T3 too high and T4 too low'. I said "I know" that is because I don't take T4 but T3 only. He stated but T3 converts to T4!!!!!
I am sorry Doctor you are wrong - T4 is supposed to convert to T3.
Why go to people who haven't a clue about how to restore/help relieve symptoms.
Hi shaws❤️🤣🤣🤣🤣 That's the same thing I had with my gp he kept on insisting that T3 converts in to T4.. 🤣 I knew he was wrong because I'd looked it up on thyroid medication and what T3, T4 do, he was not best pleased because I wouldn't let it go so he went on his trusty computer and looked it up.. His response was... "your questions are confusing me, yes T4 does convert to T3, now let's stop messing about and get this sorted!! 😲.. That is why I no longer have appointments with him I avoid that particular doctor like the plaque 😂😂😂
did he miss that lecture in medical school "thyroid 1.01"???
isn't it as well you had educated yourself and KNEW he was talking a load of rubbish - makes you feel sorry for the poor trusting patients who toddle along in the naive belief that "doctor knows best"!
Hi Redlester❤️
It took this particular surgery 18 months to diagnose me with hyperthyroidism (graves) I kept telling that doctor its my thyroid, anytime I begged him to do thyroid bloods he only did TSH.. He said they were normal... Fast forward to 2020 I requested my medical records and was not to surprised to see most of the TSH were below range or suppressed!! 2 actually said.. SEE DOCTOR!! he never acted on those results, I went in to thyroid storm and was in hospital for 12 days 😠 I've now lost my thyroid thanks to him, now I ask for ever bit of information on my blood work I get copies, I come on here to get the best advise.. ❤️❤️👍👍👍
That is shocking - there are, I would imagine, a long list of members on here with sadly similar stories to tell Birkie, each of us affected in our myriad ways by a form of medical negligence which we can do very little about officially other than begin to take control of our own health, do our own research and start to make our own decisions. But to go through what you went through and to lose your thyroid is awful. I am so sorry that has happened to you. I have a 20+ year history with FMS and CFS diagnoses and doctors only testing TSH and telling me my thyroid function was "normal" and yesterday I read a review in the literature where it reported on the fact that in a list of conditions which, of course, included FMS and CFS, it is not appropriate to rely on the TSH test alone especially when it is accompanied by a myriad of hypo symptoms which I have had from day one of being ill. I have likely had a "thyroid" problem which has gone undetected and untreated for over 20 years to a point now where I am not currently "functional" by any normal standard of what would be considered to be functional. Whatever way I slice it, doctors did that to me, by their negligent complacency and excessive reliance on the lousy TSH test. There is nothing I can do about it other than try to help myself get better or at least as well as I can.
Hi Redlester❤️
I'm so sorry to hear you have had the same awful treatment concerning your thyroid, I was diagnosed in 2003 with hyperparathiyroidism, then they did the wait and see approach, which in my mind is the worst way to treat hyperparathiyroidism because it slowly ruins your life as it has with mine, never mind the fact I've lost my thyroid!! In 2004 I got a diagnosis of ME/cfs... And lived with this diagnosis until 2018 when I was eventually diagnosed with hyperthyroidism, I'm almost sure the ME/cfs was a miss diagnosis as hyperparathiyroidism symptoms are somewhat similar to ME/cfs.. I've now been diagnosed with ostiopein of the spine and ostioporosis of both knees and ankles.. I have passed several kidney stones, and they have found out I have a gal stone all linked to hyperparathiyroidism, my calcium has shot up again along with a high parathyroid hormone but their doing the same thing wait and see.. While in the meantime I'm in pain, and have no quality of life, I have now managed to see a doctor at my practice who has gone through my records and has told me it's unacceptable the way I have been treated, he has got me an appointment with the endo but it's July 7th, 😔 I saw him again yesterday and he has agreed that July is to long to wait, so just seeing what he does next.. I am actually going to hold my surgery accountable for the lack of care during the time, I saw my doctor and insisted he do bloods for my thyroid as I say he only did TSH like yours, as we know now from being on here TSH alone can not give you a good indication of how your thyroid is performing, in my opinion this was sheer neglect by my gp.. I cannot see the practice manager due to covid restrictions, but I will be trying again after the 12th of April, I have all my results put in to relivent order with the missed TSH results, and have highlighted notes as to why no T3 or T4 were done when I clearly had below range and suppressed TSH results! I don't know how you are but if your anything like me everyday is an uphill struggle if you can, you could like me see the practice manager about your treatment nothing will change in these establishment's if we don't make complaints I feel this practice has ruined my life, they should take some responsibility for this just like yours,
I do hope your OK, keep fighting the good fight.. 🥊
Hello Birkie I can remember early on in my ME/CFS diagnosis reading about hyperparathyroidism but back then 20 years ago I still trusted the doctors and when I wondered about it I just assumed that they would surely have tested me for that. Who knows??? I'm still left wondering. But would imagine that it is a bit like undetected hemochromotosis which allows excessive levels of iron to build up in the same way that elevated calcium would allow calcium to build up and get deposited in places that it shouldn't. I applaud you for trying to hold your GP and his practice to account for what has happened - if you have the tests and the results to back up your case of negligence then I really hope you are successful. I very much doubt that I would be able to persuade my GP to accept responsibility for anything much though I would love them to and have so much on my plate that I couldn't cope with the stress of trying to fight with them - right now my focus has to be on helping myself. But I know how you feel - I feel that their neglect has ruined my life - the part of it that should have counted for anything and that I'll never ever get back. I know that I sound like a whinging complainer but I am increasingly coming to believe that I have gone on for over 20 years with missed adrenal disease and missed thyroid disease - both of which could have been treated and I could have had some quality of life back. I am at the stage now where I wonder whether no matter how hard I work at it - and I do - how much functioning will I ever get back? but good luck with everything. Sock it to em!!! They will likely try to deflect you but don't give up - regroup and go back for another assault on them!
Hi Redlester.. ❤️
I know what you mean about the strength to fight, I myself I'm not anywhere near 100% and don't think I ever will be, its so disheartening to go from a gym bunny trained with my trainer 4 days a week then did gym ball and exercise bike, went running /fell walking, that all stopped after my diagnosis of hyperparathiyroidism in 2003..much as I tried to get back to my life as before, the symptoms changed my life, then I was diagnosed with cfs, ME, fibro.. Think this was a miss diagnosis of hyperparathiyroidism!! This condition has ravaged my body leaving me with the ostio diagnosis among other conditions, like you my gp never really did the full blood count for thyroid he never looked back in my records to see my diagnosis of hyperparathiyroidism he never acted on many TSH results being under range or suppressed eventho in 2 it said see doctor, he even went as far as to say I never had any problems with my thyroid that was in Aug 2018,..i was diagnosed with hyperthyroidism in the sep 2018 a couple of weeks after he told me nothing was wrong and to stop annoying him he had other patients! This is why I feel he needs to answer why he treated me so badly I lost my thyroid and are again now struggling with hyperparathiyroidism, I'm so sorry you feel you cannot tackle your gp, my son is helping me gather all the info in my records, yes it's a pain but also an eye opener seeing how much he missed, 😠😠
One thing I've learned over these years is to fight for your health as hard as that is, I won't let this establishment get to me, I will call them out any opportunity I get and will if I think they are wrong challenge them!!
Al the best with your journey ♥️♥️
They cannot stand the fact that the patient has shown them up as it is so obvious that the professionals know extremely little. Considering that a dysfunctional thyroid is not a rare condigtion.
So refreshing to read this! Thanks for sharing.
shawsAdministrator
A 'long holiday' may turn out to be a permanent one as the majority of patients with a dysfunctional thyroid gland would want to consult.
Yes. Thankyou. Dr Lindner made several submissions to the Scottish Parliament petition. I thought they were the best submissions of all. However I think I remember that only submissions from The British Thyroid Association and its associated organisations were taken into consideration by the committee.Please enlighten me if that is wrong.
I didn't know that but believe you are right. I am sure Thyroiduk also presented scientific evidence by their Advisers.
I also assume if the Scottish Government had also looked at this 'experts' advice that the UK 'experts' would not accept advice of non-British experts (which is a pity).
Dr. Henry Lindner is located 26 miles from me. 😮😮😮 Unfortunately he isn't accepting new patients. I live in Scranton, Pennsylvania USA.
My new GP told me that TSH is the "gold standard" for thyroid hormone dosing. Back to the drawing board I go.
I'm currently on T4/T3 combination dosing.; 137 mcg Tirosint & 10 mcg Cytomel. TSH is suppressed at <0.005. Waiting on lab results for Free T3, Free T4 and RT3 which I should have in a couple of days.
I'm sorry you couldn't make an appointment. As he states he cannot take on any more patients and we know he is inundated.
I am 'doing it myself' and just have an occasional blood test now.
I feel well as long as I have T3, my heart stays calm and I feel well.
I've also trialled other options etc but none resolved awful symptoms and some made me feel worse.
So are you on T3 only Shaws? did you ever take T4? and do you take the T3 as a single dose or do you multidose?
I think every person who is hypo is given T4 initially. Thousands seem to do o.k. on it but I didn't.
I had an awful time with levo and had so many heart issues that the cardiologist was thinking of putting an implant in my heart 'to see what was going on'. A few days later T3 was added to T4 and it was an amazing change. A few months later I went onto T3 alone.
Thanks for this info Shaws - it is a good idea of potential pitfalls to be aware of, although I am sorry to hear about the awful time you had on levo and the idea that it got so bad they were thinking of fitting an implant - sounds horrific but thank goodness you managed to avoid that and T3 worked well for you. I was on T3 only until January which I was taking as a single dose, but recently had an online consult with a doctor who wants to put me on T4 [with T3 top ups via multidosing]. TBH I'm not looking forward to trying T4 but my T4 was below the bottom of the range on my last most recent blood test. At the moment I am currently multidosing with T3 which is working reasonably well although it is hard to time around meals with the no eating for "2 hours before and one hour after a dose" rule and there are energy dips as I get towards the timing of the end of one dose and the need to take the next one.
I did not think the implant was going to be long-term . I just thought it would be for a number of weeks so that the cardio could try to figure out what was going on.
Just the thought of going back on T4 would be my worst nightmare.
Your online dicussion was not necesarily to help you to feel better but to withdraw your T3. There must be some 'fairytales' abounding amongst the Endocrinology Depts about T3 but I'm sure it is all down to the cost of a packet.
We were all delighted when we found out that there would be another supplier but we didn't think the costs would be identical and extortionate.
I think something might have got lost in translation between our two replies Shaws.
When I said I had an online consult, I didn't mean with an NHS endo, but with another private doctor who, whatever his faults might be [jury out on that at moment], does intend to help me to get better.
The doctor I consulted with didn't intend to "withdraw my T3", but he did feel that I should be on at least 50mg of T4, while continuing to multidose T3, with the intention that over time the T3 level might go as high as 100-150mcg depending on what is needed. And unfortunately, for the time being I am still having to self source my T3 which is an irritant but at least I am not being denied it.
As I have never taken T4 before I am not looking forward to trying it.
lau99 think this article might give you a head start ?
Thank you Penny, will definitely give this a read
Thanks shaws this looks really interesting
My 6 monthly check is tomorrow with my Endo. Ugh.
Your thyroid gland is also in your neck.Head and neck issues and possible connection?
Wee interesting cut and paste paste
The major glands of the endocrine system are the hypothalamus, pituitary, thyroid, parathyroids, adrenals, pineal body, and the reproductive organs (ovaries and testes). The pancreas is also a part of this system; it has a role in hormone production as well as in digestion
Which list misses out what is the largest endocrine organ - the skin! (Indeed, the largest organ.)
Zouboulis CC. The skin as an endocrine organ. Dermatoendocrinol. 2009;1(5):250-252. doi:10.4161/derm.1.5.9499
ncbi.nlm.nih.gov/pmc/articl...
You make me smile girl!HELSvella an angel indeed!
Always full of informative and helpful information!?
Bless you!
Mind if I ask you an irrelevant question to this post?
Or start a new post?
I could indeed I could
Seem to feel more comfortable hijacking others which is rude and wrong I know.Sorry!
Not what you're looking for?
You may also like...
doctor recommendation in the uk??
hi guys i need a bit of help to find a new doctor i'm in walsall west mids. i was seeing doctor p...
Any Doctor Recommendations in the UK
I've had one of those horribly frustrating and upsetting GP appointments today where they tell you...
Blood tests in UK sent to the US
We have been offered blood tests that will be sent to the US for analysis. Excuse my ignorance, but...
I'd like to buy some T3 in the UK.
I understand there are Mexican sources, but I'm hoping to get it within a few days so am thinking...
Price of Liothyronine in the UK
Many of us are aware that GP's and Endo's are unwilling to prescribe T3, and we are also aware that...
A UK Doctor to prescribe Armour Thyroid?
A taste of the future in UK medicine?
Armour not being exported to the UK
