Just wondering if anyone else has experienced this....
Was feeling like I had gained a small victory when my GP referred me to a NHS endo a couple weeks ago. He won't accept I have Hashi's but he said there was obviously something going on as I have several abnormalities in my blood tests now and in his words 'you are obviously not vey well' after seeing me for the first face to face appointment in 18 months.
Just heard that the endo department at the hospital have said there is no need to see me and are referring me back to my GP. Why would they do that? Has anyone else ever experienced something like this?
Just feels like one more blow in a long line of them and not sure how many more I can take. Now feeling so unwell that I have to wash my hair in two shifts in the shower, have to sleep sitting up as I can't breathe lying down and keep falling asleep as I am trying to work (which I can't do much anyway as I am in a constant state of dazed and confused). How ill do I have to be?! Not sure I have any fight left and I don't even know what or who to fight.
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PurpleNel
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I have had similar issue with Neurology. GP referred me and they wrote a letter saying it wasn’t necessary for them to see me. They suggested other issues it might be or said I could seek a private neurology appointment! I think they are trying to cut waiting lists. It’s disgraceful.
Really? Well at least I am not alone. As I get more ill my levels of paranoia, anxiety and depression rise so it helps to know I am not being singled out to be left hanging and I am so sorry to hear you have experienced it too.
Unfortunately that is normal. Hypo is seen as something to be treated at gp level so unless there is something really weird in your results the endo will refuse the referral. Hyperthyroidism on the other hand is seen as dangerous and endos deal with it.
I have never seen an Endo at all and I have been Hypothyroid since the 90's, my first thyroid test was in 1997 and I was diagnosed a few months later. I have never felt well on Levo, but I really did give up around the time of the millennium celebrations, because I was driving myself and my family mad trying this that and the other to try to help myself. My doctor told me that there was nothing left that he could do to help me. So I had to give up to save my family as much as anything.
In 2017/18/19 I found that my problem with hypothyroid got even worse. And I found Thyroid UK. This site has been my saviour. I plucked up the courage to learn as much as I could online and last year I found even more courage, found a way to buy T3 online and started taking it.
I had asked my GP about taking T3 and he told me it was an illegal drug and told me never to mention T3 to them again. So I had no choice but to try it myself, because no one else would help me.
So yes, it is possible! There are few ways today to get proper treatment in the UK we have to help ourselves mostly. Doctors are not taught about Thyroid problems except to be told that TSH is all they need to know about and that Levo is the only medication necessary, so I can see their point.
It is disgraceful, but it is the truth and I can only tell you that my opinion is that the pharmaceutical companies have a lot to do with it. But that is only my opinion.
Don't even get me started on a pharmaceutical rant 🤪🤣 I believe they are the root of all evil!! I would love to go down the self medication route but A) I just can't sort through all the piles of info with this horrendous confusion and brain fog (catch 22 - if I could then I wouldn't have this brain fog) and B) I just simply can't afford it.
Yes, I understand exactly what you mean, even the thought of trying to wade through the info we need to learn to know how we can treat ourselves, never mind are we brave enough or can we afford to buy these very expensive hormones which we need.
I just happened to have found myself full of rage - again - and in the mood to fight back in 2019. I was lucky enough to have been able to keep it up and have spent a fortune on books and supplements which I really couldn't afford.
But when I finally found T3 for sale last year, I found that it wasn't as expensive as I had thought it would be and I am so glad that I went for it.
I don't think I could live without it now, well I know I couldn't.
I’ve been lucky I think because I’ve been under an endocrinologist for a few years now but I expect that is because I started off with an overactive thyroid until I had RAI but I feel your frustrations with not being able to see an endo. I’m hoping at some point to get an increase in my Levo or possibly some T3 but I won’t hold my breath.
I would if I had the money. But as a self employed person my work has all but ground to a halt as I have got worse and worse and I have little income right now.
most of us will never see one. (unless we go private) i haven't ever been referred despite 18 years of levo not working very well and many many over/ under range results. I daresay if i insisted, they would refer, and i'd get the same as you . "go away back to the GP"
There's little point getting referred to 'just any' NHS Endo, unless you are extraordinarily lucky you'll get one who even if they agree to see you ,they won't consider adding any T3.
There are a small handful of NHS Endo's who will consider it. and if you don't get referred to them ,the experience it's often not much more help than seeing the GP.... in fact sometimes it's worse.
From what I have read on here over and again it does seem little point in seeing a NHS endo anyway. I did ask for a specific referral to a lady NHS endo (as advised through here as sympathetic/understanding re Hashis) but I guess I never held out much hope and it was completely ignored anyway. I have got so anxious and paranoid through all of this (never suffered from either ever before in my life and actually thought they didn't exist!!) that I was stupidly worried I was being singled out. That silly thought has now been firmly laid to rest by all the replies. I am just one among very very many.
Oh no .. it's definitely not just you .. they did more (mental ) harm to me over the years by having me believe it was 'just me' ..asking me to have counselling for years before they ever even bothered to look at my thyroid function, then not taking me seriously when i said "Levo only improved me about 75% . what about the rest of it ?" but no ,my thyroid problem wasn't a problem any more 'it's been treated' , none of the other thyroid patients have that problem, would you like to talk to the counsellor again...etc etc etc.All that dismissal and patronising made me start to doubt my own experience ,and did more harm to 'me' than being Hypo ever could.
It would probably have been better for my mental health to be left untreated but told "you have a life changing incurable disease and here's a load of support and now everyone will be kind, and supportive , and understanding of your limitations" rather than live with being constantly told "there's nothing wrong with you " when i didn't know why i didn't function properly anymore. and the whole world thinks "hypo is not a big thing". .... when in fact it's a very big thing.
don't let them do this mental harm to you ... remember, you know what 'well' feels like , and if you felt well you wouldn't be here .. you'd be out there 'doing life' like you want to .
I have seen a private endocrinologist twice and I have been given medication for PCOS and insulin resistance. However, I do not feel that the medications are agreeing with me. My GP is referring me to chronic fatigue clinic. He apologised that neurology wouldn’t see me. Really difficult to know what to do next
Basically my main concern was numbness and tingling in mouth and hands. GP wasn’t very helpful at all. So I referred myself to private endocrinologist. He looked at vitamin levels and helped me improve them. On the second visit he gave me spiralactone (for pcos) and metformin as he thinks I have insulin issues but not diabetes. I haven’t reacted well to either medication so I’m going to stop taking it. The GP did agree to refer me to neurology but they have said they won’t see me. The endocrinologist also referred me for a thyroid scan which identified nodules and Hashimotos which I had been unaware of.
Ah that's interesting thanks, I don't think I would react well to either of those, Iav never been sent for a thyroid scan only bloods, I am looking into natural supplements to try and balance my hormones and addressing diet, Magdalena Wszelaki is worth researching
Thank you. I feel awful having taken the medication. I hope side effects disappear soon. Good luck with natural supplements. Let us all know how you get on
Shocking. I had a similar experience with neurology. Couldn't give me an NHS appointment but they were very happy to see me privately. Seems like a bit of a racquet to me. Consultants should not be allowed to tout for private work whilst turning you away from NHS appointments!
Have you been checked for obstructive sleep apnoea?
I discovered recently that the NHS endos where I live largely focus on hormones. I have a problem with pain, swelling in the thyroid area and voice changes. My endo suggested I ask my GP for an ent referral I was not impressed. However GP says ent deal with the physiology of throat.
I know! As I have very little voice now and permanently in pain, I have an appointment with a private consultant. Not something I would normally consider.
Same here re the private route. Never considered it in my life until now and only because I have been so gloriously failed by the NHS again and again. I am a freelancer and barely able to work now so not only has my income all but dried up but I have to pay out for help to have any chance of a normal life again. If someone had told me what all of us on here are having to go through not so long ago I wouldn't have believed it.I hope you find some relief from your suffering soon.
Hope you do too. I had to give up my part-time job 2 years ago and am stuck more or less pottering at home. Until about 3 years ago I thought doctors knew best!!!!
I thought the same way PurpleNel, I believe anyone living in the UK would think that way. That is why 2 of my children and my mother have little time for me and rarely if ever speak to me.
They don't understand about lowthyroid and they can't believe that in 2021 - but since 1997 in my case - that the NHS can't or refuses to treat us. They think I am just being bloody minded, they don't understand how much in my life has been affected by hypothyroid.
That is so sad BrynGlas. The hell of this is made even worse if those around us belittle or have a total inability to grasp our private hells. I am so sorry that you have all but lost members of your family through it all. The horror of this damn situation just sends out ripple after ripple of pain and suffering. Made all the worse because we KNOW someone could make it all go away.
Too true. I am getting used to the realities of life as far as thyroid goes. How awful that we all have to get used to the lack of treatment at all - never mind good treatment for hypothyroid at least, but I suspect both types.
Anything is worth a try. If it can be discounted by ENT, at least you can drop that off the list of possibilities and can have another cracking at your GP, who seems to be decent enough to try for you.
Its appalling to have to wait so long. I think long waits are excessively long for everyone right now, but I don’t think that hospital knows what they are doing! We are in the same area.
My daughter was waiting 1 year (bar 1 day) for a derm referral. The mark remaining is so tiny now not worth visit so we cancelled.
I was referred to ENT earlier this year under “2 week wait” as radiology had declined to scan a new neck lump (this was a new policy).
2 years previously I was referred direct without an refusal.
ENT did a quick examination & arranged a scan at another time. (So really the appointment was unnecessary). I had a telephone consult to discuss the scan findings & they were planning a second scan 3 months later, but then I was contacted to arrange a face to face appointment to discuss the scan.
I explained that I had had this by phone and that another scan was to be planned, so they asked when was it planned for, of course it hadn’t been yet. Then as I mentioned some new symptoms she though a consult would be a good idea after all. It was arranged pretty quickly. At the appointment I was waiting hours….I Was literally falling asleep by time I was called in. He was apologised for the wait & explained there had been an error and his colleague had been booked in for both clinic & surgical appointments. So he had to see all his colleagues clinic appointments as surgical took priority. He hardly examined me & said everything’s fine, no worries, I wouldn’t need another scan. Then he discharged me! I was so rushed out & sleepy after waiting hours I didn’t explain about other symptoms, so I’m pretty cross with myself!
Can you contact you GP more frequently & ask what can be done? Be the “squeaky wheel”. Say you are worried about the swelling affecting your breathing, “be dramatic” if necessary. Ask of you should phone the ENT department directly & explain. The GP might discourage you from doing that and say they will speak to hospital about it. If no progress - you can phone. I’ve had 2 nurses told me to contact the department secretary’s to advise of worsening symptoms etc . You can do it via switch board if you don’t have a letter. But I often find you need to leave a voice mail message. They are often very helpful once you speak in person.
Im on a wait list for another specialist too. I was discharged from same department 7 years ago. Then a referral last year was accepted but then passed back and I was told to get referred once “covid over”, as my telephone description didn’t sound too serious. I told the GP and she didn’t believe me. She said they are not allowed to do that. So she refused to issue another referral. You would believe the hoops I’ve had to go through to get another referral.
When the appointment does comes through, whenever it will be, Ive prepared photos marking out the issues & a list of thing I want to point out & discuss & I’ll be giving them a copy. I might even title it “to prevent further inaccuracies & omissions”
What a horrible experience for you PurpleNails. All of this jumping through hoops when we are unwell and vulnerable. It is crazy. Am going to practice being dramatic as you suggest although I think if this goes on much longer there will be no need to act.
Yes, Slow Dragon - trying to supplement. Coliac test done and is negative but am now on gluten-free diet. I don't have the money for a private ultrasound. Have paid upfront for a private consultation I have in October and need to save the only money I have left in case I need a follow up there.
Yes the wait lists are horrendously long. I was on a list for an op......over a year ago! They then told me I had been dropped off the list. I protested so was eventually re referred......the surgeon was keen to show he was right so promptly said I dont need the op.......though a year ago the same surgeon told me surgery was my only option. I still have the same problem which has worsened. Am looking at private consultation. GP very sympathetic. I suspect GPs are seeing a lot of this..... The government are not funding the nhs adequately and frankly the nhs cant cope. Oh and am meant to have a bone scan ordered 14months ago as on medication that depletes bone stength and a review with my oncologist.......not happened. GP meant to be chasing. The nhs is falling apart....
I'm going off topic in my reply to you but I do feel my comment is relative. My husband has a very enlarged prostate gland...during a colonoscopy he was told it is the size of a banana...again. He went into kidney failure last time this happened and was very ill before he had a Turps...an op to score some of the prostate tissue out thereby reducing the size of the prostate. He saw the GP about this just before lockdown, who referred him on, but the consultant 'bounced him back' and said that he will need to empty out with a catheter (this is not left insitu) three times a day instead of once. It really feels unacceptable that these things are happening'. The GP was clearly embarrassed when passing this on to my husband. In your case you are clearly very unwell and yet you are being pushed back with no suggestion as to who the endocrinologist in 'his wisdom' feels might be a more appropriate consultant for you current needs. My heart goes out to you. You must feel like screaming. Your GP is probably feeling as frustrated as you are. Take care, x
That isn't off topic at all Knip but a a very clear example of the terrible mess our health system is in. Thank you for sharing this and so sorry you and your husband have been through this.
I guess some in your circumstances take things into their own hands and self source levothyroxine to see if that helps… or find a friendly private Endo.
Look into gut health as most illnesses start with this. Give up gluten, dairy and eggs. Cook from scratch fresh food, with plenty of protein. Test for any bacterial issues in the stomach. Read up on functional medicine practices. Ask for estrogen and progesterone to be checked. Geoff Hyman on you tube has done very informative programmes on mysterious symptoms like chronic fatigue, thyroid and mercury overload. Take a good quality pro biotic. Read Brave New Medicine by Cynthia Lee a gp who had thyroid issues and chronic fatigue who had to start with healing her gut. Drink fresh cranberry and or pomegranate juice or eat the fruit. Take care and good luck. I too was very ill over a year ago and have much improved health by doing the above. Nutrition is the key with low stress too.
I am trying to do as much as I can to help myself. Have a very healthy diet and have given up gluten and dairy but as I am rather poorly cooking from scratch is just one more thing I can't do at present. Also, with such severe brain fog I can't read much, or at least when I try I go over and over the same sentence with nothing registering. I am doing all I can where I can with help and advise from this group but it is cruel that when we are at our most ill we struggle to do the very things that might help us move forward. At the moment just taking one breath after another, taking a shower, eating etc feels like the most I can do. I am not a quitter. Have even had doctors remark on it in the past with other health issues telling me how surprised they were that I was still standing. But this has brought me to my knees.
You are doing the best you can for yourself. There are so many of us who have been through this. The admin on here are fabulous. Hopefully in the future the GP service will be consistently supportive of thyroid issues. Take care
Feels like you are where I was in January. Just to be clear - have you had anything off the doc yet? All this talk of T3 and NDT ? I thought you had yet to get any Levothyroxine- is my brain fog setting in?. It has been a long busy day 🤔
Unfortunately this seems to happen more and more often, as all referrals are triaged on receipt. My rheumatologist requested my GP to refer me for a thyroid ultrasound as she said she felt a goitre, which my GP duly did, only for the request to be rejected on the grounds that I had no breathing or swallowing issues. My partner has also been discharged from two departments, one being endocrinology, because his symptoms and results either do not tick their boxes, or, in the words of his endo, she "found them too confusing" !!
I had a referral to my endo in Lincoln as my TSH is 1.27 but I feel rotten. He said we treat according to TSH, yours is fine so I am referring you back to your gp who is doing bloods yearly.ow as they are fine. Except I feel so poorly and no one cares.
It is hard to feel like anyone cares and all of this at a time when we are at out most vulnerable. Is it any wonder so many of us end up severely depressed and anxious. Keep your stress levels down...we are told. How on earth are we supposed to that when the very people who are supposed to be helping us won't do anything.My GP referred me to an endo but not because he thought it was thyroid. In fact he refuses over and over to accept it is thyroid. His words were you have a lot of abnormalities in your bloods which have nothing to do with thyroid (I have checked and he is wrong. LOTS of these abnormalities are indicative of Hashimoto's) and there is clearly something going on so we will see what an endo says.
Have you had your anti bodies checked to show hashi? And what are your current thyroid bloods if your feeling so rough I would start supplementing on a low dose of a combi thyroid supplement either to just help the thyroid function better or something like NDT if it shows your hypo to see if you feel any different and then re test your blood in a few months
I’m so sorry to hear this. I had exactly the same experience. Endo said his letter that there was nothing he could do for me that the GP couldn’t. I’d had very bad side effects from Levo. Endo response was ‘she just had to take Levo’. I’ve since been to a private Hashimotos specialist and am now on NDT (5 weeks). It’s been worth the cost (which isn’t as bad as I thought it would be). Still having issues, but at least I can email a doctor and get an immediate supportive response. Good luck!
Looks like a few people have had to go private, which is unfortunate, It really shouldn’t be the case, if we have an NHS system, however a lot of NHS doctors also see private, so it costs delays.
I waited seven years for a referral to see a endocrinologist, as my doctors kept refusing.
In the end I asked a rheumatologist if he would refer me and he did, however I haven’t received any extra help or any other help from the endocrinologist. Apart from I did get my questions answered and I was told I did have Hashimoto’s, as none of the doctors I spoke to could actually give me a definite answer.
I have only become a little bit better with my thyroid because I have listened to others and taken vitamins i.e. vitamin d3 (a double dose) As I’ve put on a lot of weight, so I needed the double amount, this is something I wasn’t aware of and again took years for me to learn and before my vitamin D levels became right.
I’ve only managed one face-to-face appointment with the endocrinologist and then Covid happened, so I’ve only had telephone consultations, which I cannot abide, prefer face-to-face, so I’ve asked to keep on the register with the endocrinologist until I get a face-to-face as I didn’t quite get all my questions answered on the first visit. And my blood results came back okay.
I know it’s extremely frustrating. As my levels are always up-and-down and I’m very surprised endocrinologist hasn’t referred me back to my doctors, however I really did moan and whinge the last time to stay with him, as previous doctors never listened to me and this is my third Drs surgery.
I still have to get some private bloods taken if I can manage to stay awake to do this as I’m always falling asleep especially after breakfast then I have to have an afternoon nap so I think my levels may have dropped again but I wanna know that when I managed to get a blood test.
I’m sorry to hear that you are struggling with appointments but you’re not alone good luck to everybody and look after yourselves xx
I had a similar experience.It was because the Endo saw my blood results and noted that they were all "in range", therefore there was no need to see me.
I kindly reminded my endo that it’s taken eight years to see him, so I’m not going to be referred back to the doctors. I also explained it’s my third doctors surgery and every time I asked for blood tests, it sometimes took six months to a year to get one, so I’ve been left suffering that length of time, with fatigue and other symptoms.
I basically stated that I will not go back to my doctors because they are, ‘bloody useless,’ please excuse my language - and, They don’t listen or even care. And they didn’t even know if I had Hashimoto’s or not and couldn’t give me the answers that I’ve been asking for years.
I was absolutely fed up at the time and I spoke the truth, normally I’m extremely polite but when I’m tired I’m horrible and I’m fed up of being tired and horrible, if he had referred me back to the Drs I think I’d have lost my temper.
I’ve also previously mentioned to him that I was left over 8 months without medication, as the hospital and the first doctors surgery I was with, made a mistake and told me my blood tests were negative, when in fact they were positive.
I actually only found out a few years ago when thyroid uk asked me to send in my blood test results, when I received my copies I took a good look at them, that’s when I realised I’d gone eight months without any medication. And none of the Drs made me any wiser about it. I think that’s why I suffered such a long time and it took years to get a blood test to be in range.
Very similar experience, pain in head at right eye, seeing very dark out of same eye - optician checked, sent to GP, referred to hospital who phoned optician and said no need to take further!!!! This is along with thyroid related stuff which is being ignored, legs now swollen and discoloured but GP says cant see - 19 staff in the nursery i work in can!!! Hope you get some help soon
I get the impression that when your GPs are tired of telling you your thyroid labs are fine and your symptoms are not related they send you to the Endo and let the Endo decline the visit which your GP hopes that this will confirm what he/she has been telling you all along that their is nothing wrong and you will stop asking…. Pretty sad!
Hi there, unfortunately this is an all too familiar story amonst thyroid patients. I personally have had the same kind of treatment for years. Hard as it may be we need to start speaking out and when there are enough of us doing it we will get heard. We are suffering and receiving inadequate care from the NHS. Their so called 'normal' ranges are not optimal and we are being fobbed off to councillors or being told it is all in head because they don't have the knowledge. My friend has also been sick and bedridden for many years and on Levo which made no difference at all. She decided to have a few zoom calls with a functional thyroid specialist and got prescribed T3 (liothyronine) and finally got her life back. We are now petitioning and writing letters to our MPs etc and we now have a group on facebook. Please feel free to join us in this wishing you all the best facebook.com/groups/1405083...
I’ve never been referred to an endocrinologist. The closest I’ve got to any help from one is when he briefed my GP they were using the wrong range for TSH. Grateful for their input as it prompted an increase from 25 µg of levothyroxine (which I’d been left on for six months) up to 50 µg. Whether they had an off the record discussion about all the other stuff she had done, or more specifically NOT, I have no idea.
It may pay to go private- seems like your GP may not be confident in their knowledge of your condition. I suppose that’s better in one respect to blissful ignorance and over confidence.
A friend had battled for some time to see a specialist (not thyroid, gynecological) and was getting nowhere. This was pre-Covid. She arranged with me to go "shopping" with me carrying an overnight bag for her. We went into M&S where she found a spot and lay down. I screamed for help. The staff were brilliant and called an ambulance straight away. The amulance took her to hospital where she saw the specialist she had been waiting to see for 2 years within a couple of hours. She was booked for surgery the following day.
Just thought of one other thing. A lot of us with Hashimotos have had a virus in the beginning. I found out many years after that when I was so low in energy that I had had Epstein Barr virus. The test was done many years later and although the virus wasn’t active showed I had had it in the past. This was probably 2012 when I first went to the doctors chronically tired. I wasn’t tested at this time for this and had to fight to get my thyroid checked. If you have/had this which a test would show, it can flare up again and cause inflammation/chronic tiredness. It’s worth checking. If you have it or had it, avoid eggs as they give the perfect breeding ground for flare ups. As others have said Hashimotos sufferers don’t absorb many vitamins well so check B12, iron, vitamin D and K. It’s very difficult when we are worn out to do the above. I maxed out credit cards to see a specialist but well worth it in the end as I have my life back.
Thank you Sewit1 - I am learning so much here and although it makes my head spin at the moment (although so does attempting to make a cup of tea right now! - it doesn't take much) I am writing everything down and when I can think straight I can go through it all. I had read somewhere in the last few days that low stomach acid in Hashi's is another problem that interferes with vitamin absorption so I did the burb test this morning with bicarb soda. I still haven't burped 2 hours on. So guess that is one more thing to add to the list.
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