I need a rant!

[PurpleNel]

WARNING: MAY STRAY INTO MELODRAMATIC SELF PITY

So.....after very recently being rejected for a referral to NHS endo I have now been told that my ultrasound has been rejected too.

I asked for this as I can now see a visible swelling on my neck and it would help me get a NHS diagnosis for my Hashi's. The appointment was by telephone so the doctor obviously couldn't see. On the last (and only) face-to-face appointment I have had in 18 months the doctor examined everything but my neck.

I remember in the past being sent for hospital tests as a ruling out procedure or as a further investigation thing. Surely that is the whole point...or am I missing the point?

I was sent for a barium swallow right at the start of all this when my GP was insisting all of my issues were probably acid reflux. The hospital were happy to do these tests even though I had NO symptoms but they are not happy to carry out a procedure with far higher likelihood of a problem? That sounds like total craziness to me (but, again, someone PLEASE point out if I have missed something or am being unreasonable).

Strangely, I had no issues with acid reflux at that point although when I tried Gaviscon just to keep the doctor quiet I experienced for the first time in my life heartburn. (I now know, thanks to this forum, that that is almost certainly because I have low stomach acid and antacids can make this worse).

During the phone call where the doc cheerfully told me I can't have an ultrasound he told me again - there is nothing wrong with your thyroid. All of your tests are normal. I asked him if the over-range TSH and high antibodies on private blood tests that I had sent them and said I wanted added to my records counted for nothing. 'What private blood tests?, he said. They have disappeared it would appear.

Ok...so I ventured to ask him why so many of my full blood count blood results and certain others are marked as abnormal on GP test results. (I impressed myself with how calm I was managing to stay in my attempt to avoid the hysterical woman label). He told me they were 'only just abnormal'. He couldn't answer why they bother to have a range at all then if they are going to ignore any kind of 'abnormal'. He also couldn't answer how abnormal something has to be before they take any notice. He also couldn't answer why all of those in the abnormal range had steadily crept up and up over the last 10 years.

Now, I have finally had to admit I can't make a living anymore in my ever-decreasing state of health. I am a freelance writer and my severe brain fog has seen my output dwindle to virtually nothing. I have worked so hard and so long to build up a stolid reputation in this difficult and highly competitive industry and now I watch it slipping away. It breaks my heart. No-one is going to contract a writer who says I have absolutely no idea when I can finish your project. I have managed to reach the age of 55 without ever claiming a penny of benefits in my life and now I am forced to do so by what, in my mind, equates to medical negligence.

My work was a source of keeping my head up amid ever dwindling self-confidence/esteem/belief. Now I don't even have that.

During that one face-to-face appointment the doctor said 'you are clearly very unwell'. So why am I being left to watch my physical health, mental stability and my livelihood slip further and further away? I feel like their ignorance, incompetence and negligence has gradually taken everything from me (warned you - melodramatic self-pity!) And there is nothing I can do but watch it.

I have a private appointment at the end of October which is my light in the dark. But as someone shortly to be now on benefits it is highly unlikely I will be able to afford more than one appointment or private prescriptions.

I would scream and throw things but I don't have the energy.

I have now changed GP surgeries (something many of you have told me more than once to do) but am anxious about the whole starting from the beginning thing.

If you've got this far thanks for listening to my rant which is pointless really but has somehow made me feel better.

[Horsey07]

My goodness! You’re absolutely entitled to a full on pity party after that experience so rant away! What a horrible thing to go through. Why is it that GPs think it’s okay to behave like omniscient gods treating us poor little women for hysteria rather than accepting that we actually know our bodies and are intelligent enough to have done some research? Well done for changing GP, I know what a huge decision that will have been as I’ve just done it myself. October must feel like a lifetime away right now, but hang in there, it will be worth it. Have you considered self-medicating? I’m sure the lovely, knowledgeable people on this forum would be happy to guide you. T3 and NDT are both available online, and reasonably priced (obviously you wouldn’t need both and I understand NDT is easier to manage). You could always do your own research and see if there’s anything else you can be doing in the meantime to give you the best chance of keeping your work going and being optimally treated. Thinking of you, rant away (by PM if you prefer). X

[PurpleNel in reply to Horsey07]

Thank you for justifying my rant Horsey07 and for being willing to listen to more by PM. That is so kind as you are not well either. This forum has kept me sane. Am reading all I can to self-educate myself but it is slow going as it feels like thinking through treacle. But getting there.The more I read the more all the dots join up.

I am going to hold off self-medicating for the time being until I speak to the private lady but if I have to I will go down that route, definitely. I have eradicated gluten and dairy and am supplementing but it doesn't seem to have made too much difference but I guess all of these things take time (am not very patient!)

I have moments of feeling strong mentally and moments where I feel I am falling apart. Every time I post on here I get a bit of strength and every day the end of October is one day nearer.

[Horsey07 in reply to PurpleNel]

We’re all in this together, and most of us know the frustration of not feeling heard. My previous GP was patronising and completely unsympathetic. The support that this group offers is a real lifeline.

[PurpleNel in reply to Horsey07]

There are so many of us. I feel guilty every time I post something as I am aware that there are those who have suffered far longer than me or are not in a position to go down the private route at all. Or I feel selfish writing long involved posts that others have to read. But I just can't stop myself sometimes and it brings me such a feeling of being less alone, comforted and understood.

[Horsey07 in reply to PurpleNel]

You have nothing to apologise for as far as I’m concerned. This stuff is tough, and NHS constraints make it tougher, which is awful given how common a condition it is. Remember to be kind to yourself. I try to do something creative every day if my energy levels allow. Might be worth just taking time to do something that gives you pleasure. I think we’re seeing the same endo so I’ll let you know how I get on. X

[PurpleNel in reply to Horsey07]

Please do! When is your appointment?

[Horsey07 in reply to PurpleNel]

19th October.

[PurpleNel in reply to Horsey07]

The week before me. Please let me know how it goes.

[radd]

PurpleNel,

Many of us will relate to how you are feeling and this is why many of us source our own meds & self medicate with the help of private bloods tests and discussions with other members.

I can't see any results showing your FT3 & FT4 with ranges, only that you have largely elevated thyroid antibodies denoting Hashimotos. Hashi can often take many years to destroy the thyroid gland which will produce a slightly more diminished supply of hormone after each attack.

You sound as if you have subclinical hypothyrodism and sometimes it can be that following a Hashi protocol (removing triggers/gluten free diet/optimising iron & nutrients/supplementing to reduce antibodies, etc) is enough to calm the immune response enough to reduce swelling and delay the need for replacement meds. Or it may be that meds are needed to help control the Hashi better & replace those already missing thyroid hormones.

If you post any recent thyroid hormone results that include FT3, FT4 & TSH complete with ranges (numbers in brackets) members will be more informed to offer their opinions. Sorry you are going through this. It can make one feel very isolated and ignored by those who are meant to help keep us well.

You may find reading The Root Cause by Isabella Wentz helpful.

[PurpleNel in reply to radd]

My latest resultsTSH

25/2/20 - 1.59 ( 0.35-3.5)

7/21 MEDICHECKS - 5.04 (0.27-4.2)

3/8/21 - 1.8 ( 0.35-3.5)

SERUM FREE T4

25/2/20 13pmol/L ( 8-21)

7/21 MEDICHECKS 16.2 (12-22)

3/8/21 13.1

T3

7/21 MEDICHECKS 5.0 (3.1-6.8)

GP has never done T3

[radd in reply to PurpleNel]

PurpleNel,

TSH is fluctuating most likely inline with Hashi attacks. T3 is over 51% though range as your body converts more FT4 in an effort to retain well-being, whilst FT4 will most likely continue to fall. Eventually both thyroid hormones will become deficient.

Your GP surgery is not alone in refusing to treat you as the medical profession generally hold no credence or sympathy towards Hashimotos autoimmune disease. This is because Hashi does not warrant the use of immunosuppressant drugs or steroids. Therefore, Hashi sufferers are left until the antibodies have destroyed enough thyroid gland to cause a large enough hormone deficiency that can then be replaced with levothyroxine. Meanwhile, Hashi symptoms are dealt with prescriptions for anti-depressants, anti-inflammatories, antacids and beta-blockers.

Let's hope your private endo is more sympathetic and understands the progressive workings/symptoms of Hashi. Some are very good 😊

[Hidden]

Good diagnosis is about elimination. So you are not doing anything unreasonable whatsoever.Unfortunately GPs have little autonomy these days on how they spend budgets and, to a degree, are bound by financial constraints against risk ratio. It isn’t personal or even necessarily a strictly ‘clinical’ decision.

Your private endocrinologist (in my experience) can instruct your GP to issue NHS prescriptions, blood tests and scans - so be sure to discuss that at your consultation in the event that any of these are instigated . You don’t automatically have to pay privately for everything beyond the consultation .

Make logical notes for your appt of what you want to discuss, including symptoms and impact on quality of life . Take a spare set to leave with Endo .

Very best of luck with your appt xxx

[PurpleNel in reply to Hidden]

That is helpful info re the private endo being able to instruct my own GP. That is another little piece of comfort and hope for when/if I run out of money. The private lady I am seeing is also a NHS GP from what I can gather so perhaps she will be able to help steer me on how to get more from my NHS GP too.

[Hidden in reply to PurpleNel]

Hopefully / maybe I was fortunate with who I saw / but I was never charged for anything other than the consultation itself . And my GP never questioned an instruction or request from the Endo 😊It’s definitely something you can discuss .

I do hope it goes well for you x

[Lalatoot]

You are not alone. And please feel free to vent at anytime - we know how it is. And yes you are being very poorly done by. Only thing I can suggest in the absence of a face to face is to take a selfie of the swelling and then you can e-mail it to a GP or whoever is poorly mistreating you at the time.

I ended up at a private ENT because no-one was looking at my neck. Luckily he then put me onto his NHS list as I had no health insurance. So if you have to go private and can only afford 1 consultation, research to see if there is a part-time NHS consultant who sounds competent as he may be happy to subsequently see you on the NHS.

I am really struggling with not being cynical with my NHS incompetent endo. I have this urge to say:

"Get the 'Endocrinology for Dummies' down off your shelf . Now move beyond the well-thumbed 10 pages that you've read.....where it starts to get difficult, that's where you need to be!"

[PurpleNel in reply to Lalatoot]

😂 that made me laugh out loud. And that is medicine in itself. And didn't think about taking a picture - what a good idea.

I have just switched GPs and have already been contacted asking me to come in for a new patient face-to-face appointment week after next which is already an improvement on last surgery where I had to plead and beg for everything.

[Lalatoot in reply to PurpleNel]

Glad to be of service 🙃

[pennyannie]

Hello PurpleNel :

Fortnately for me, when I found myself in an ever decreasing circle of wellness I was retired :

I'm with Graves post RAI thyroid ablation and unsuccessful in getting any other treatment than T4 - Levothyroxine through the NHS, and referred to as a conundrum by my doctor.

I now self medicate with full spectrum thyroid hormone and have back my independance. I choose to stay away from the doctor, as fortunately for me, my only health issues are those of the treatment I received, and resultant hypothyroidism which I've found I can manage for myself.

[PurpleNel in reply to pennyannie]

There is such a good point in there - my increased anxiety and lowering self-esteem are mostly due to my treatment (or rather, non-treatment) by the NHS. Being angry/frustrated/stressed just takes more energy at a time when supplies and already low. I suspect if I just stop trying to make any headway in a system where tens of thousands before me have failed I might reduce my stress.

[pennyannie in reply to PurpleNel]

Well yes, I fought the system and yes, as with Graves being a stress and anxiety driven AI disease I realised I was simply exacerbatng my own symptoms by keep trying.

I just feel totally disappointed and disillusioned about the whole " set up " :

It's ironic really, as now I'm so much better placed to be in the NHS system - but I'm not prepared to jeopardise my progress or make any retrograde steps taking instructions from people who know less then me, and believe me I don't know " that much " :

A couple of books and this amazing forum have helped me on my way back to better health.

[Jazzw]

It’s utterly crap. A decade ago I was spiralling lower and lower but just got the “You need to eat less and exercise more” spiel from my doctor. I now don’t bother with my GP unless I know I need a referral for something “mechanical” (though even then I’ve often left the surgery in tears—like when I could barely walk for the back pain I was suffering. Fortunately, my next move was to pay privately for osteopathy which thank goodness made a huge difference. They told me that they see so many people like me—completely let down by their GPs).

I’ve been self-medicating for several years now. Every now and again I panic about doing so and try to convince myself that maybe I should “wean myself off” (crazy thoughts—afterwards I realise that in fact I was undermedicated and needed slightly more thyroid hormone not less—and then, ting! Crazy thoughts gone!).

But I shouldn’t have to self medicate. I should be believed. How on earth can you exercise when you feel so unwell? As for eating less, I think that might be what for me into this mess in the first place—spending my teens and twenties chasing “slim” and at times living on dust. Screwed up my metabolism. FUBAR’d.

Sending a big hug xx

[lolajone]

Just wondering if you have also considered other conditions. Its worth reviewing your abnormal blood results to see if they point to a concurrent condition. Brain fog may also be due to menopause.

[PurpleNel in reply to lolajone]

I have considered other conditions but as my GP so far has failed to see what appears to be obvious to the knowledgeable people here I am also facing a brick wall with anything else. And def think some of my symptoms are menopause but as so many cross over with Hashis it is hard to know which is which.

It appears that so many on here found everything improved once they were on the right medication to address the thyroid issues so that is what I am hoping for.

[Josephineinamachine]

Well done for staying calm in the face of your eejit GP. I have to grip the side of the desk until my knuckles show white to keep that ‘calm - reasonable - I’m not hysterical’ image up. You asked very good difficult questions which the GP couldn’t answer. By not having a complete hissy fit you did well! Go you! Good you’re changing GP and fingers crossed the new one will at least listen 🤞

When I saw my private Endo I was clear about how shocked I was at the expense of this disease - private blood tests - GP refused to retest after a dose increase, having to go private etc. He wrote to the surgery and demanded a full blood count. I noticed the blood test request then said in brackets (under the care of Professor XXX) like the surgery can demonstrate no responsibility. I’m hoping yours will offer support under the NHS.

I wouldn’t worry about emphasising your financial concerns. I’m worried about money - I’d love to drop my hours at work but I’m worried I won’t then afford the possible next costs of treatment so I get what you’re saying.

At 56 I’ve worked hard all my life and a lot of my identity is bound up in my career. I never thought I’d be wishing to retire at this age (and I can’t anyway!) but I’m having to make peace that I’m simply not going to be as good at my job as I was. This really sucks.

My GP (a woman in her 30s) told me I shouldn’t expect any more at my age than slumping exhausted at the end of a working day at 5pm and spending all weekend stumbling around in fatigue and fog trying to recover from the week. She thinks this is ‘normal’ for my age? I nearly screamed in her face. I didn’t. I just gripped that desk harder (and had visions of being the Incredible Hulk and turning green and angry instead).

Hold onto those moments of clarity because that’s the real you, not the hypo you, so you’re still there! With the right treatment you’ll find you again. I’m still on that journey and still having ups and downs and find it all very confusing but occasionally I can say oh look at me being me again! So I hang on to that in the firm hope that I will come back!

Hanging on to positive thoughts when you can, and hanging in there for your appointment, and, well just basically hanging on, is very important. Hang on! And try gripping that desk! X

[PurpleNel in reply to Josephineinamachine]

What a wonderful reply and another that makes me laugh out loud so thank you for that. 😀 Every day with a smile in it is a good one. And thank you for acknowledging my achievement with the 'be calm when you want to hit something' attitude. It FELT like a huge achievement to me and having someone else totally understand this.....well it is all comfort and reassurance.When I first joined this forum I marvelled at how so many members were managing to joke about their terrible situations but I now realise this is the ONLY way to survive amid this total NHS cluster****

I have received some wise words from so many people and your message is rammed with them.

What a bloody insult to tell you you must expect to be totally wiped out by the end of a working day. Jeeeeeeeeez! We are not in our 90s we are in our 50s and as I like to point out to anyone who ignorantly suggests this is all to do with my age that just 2 years ago I was spending most of the day surfing and most of the night dancing (while people half my age I might add couldn't keep up with me).

So much in your message resonates with me and I am so very sorry to hear of your working situation. And thank you for reminding me that I am still there. I so miss the happy bouncy me and have been worried that she has shipped out forever but you have reminded me to expect her back at some point.

You sound like you are being so positive about it all (and doing plenty of desk gripping) and I am so glad you have responded to me - you have really helped.