Annoying chat with new endo: I’m collecting weird... - Thyroid UK

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Annoying chat with new endo

Mike77
Mike77

I’m collecting weird medically unrecognised conditions. Three months after having Covid 19 I’m still breathless weak and more of a wreck than usual. I now have a diagnosis of chronic fatigue. As I can’t work I have decided to apply for early retirement. So needed a letter of support from endocrinology. Here’s the mad conversation with the new endo.

Endo - We can’t write you a letter because no one can be still ill once TSH is normal.

Me- So why did I get a year of T3 and specialist endo input?

Endo - Because it help some people.

Me - Yes, like the kind of people who don’t recover on T4 only?

Endo - No, there’s no evidence people’s thyroid cause symptoms when TSH is normal.

Me - So why was I prescribed T3 ?

Endo - You said you didn’t feel fully well and it sometimes helps.

Me - So some people with normal TSH feel unwell and can be helped?

Endo - No, no one can have thyroid symptoms once TSH is normal.

Long silent internal scream. So I was prescribed me an expensive drug for a year on the basis that their couldn’t possibly be anything wrong with me 🤪🤪🤪🤪😱😱😱 one of us isn’t thinking straight.

I went on to ask, ok so if I can’t have symptoms could you at least write that at least 15% of levo only patients complain of symptoms and this is robustly established in the medical literature and referred to by NICE and the BTA?

Endo -No I can’t write that.

Me - Why?

Endo - just can’t.

Worse of all I used to have a lovely endo that specialised in post partum thyroiditis and new all the science inside out. Oh well suppose it’s a dose of what most people get.

105 Replies
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Can you find another Endocrinologist?

Mike77
Mike77 in reply to Lora7again

That’s top of my todo list Lora7. But TBH I can self source T3 if I need it and my GP can prescribe my T4 so unless they are a thyroid expert I don’t see the use for them. It was more the weird logic that did my head in a bit.

Lora7again
Lora7again in reply to Mike77

I haven't seen an Endocrinologist for years because they all stick to NHS guidelines which is going by the TSH. Hopefully you will find one that will help you. x

Mike77
Mike77 in reply to Lora7again

I think you are right. I’ve been messing about with endos for three years and this site has been a better more reliable source of help. I’ve kind of graduated from being a newbie to having enough knowledge to self manage. I’m male so I can say honestly that if more men were feeling tired, emotional and brain fogged their would be some actual interest in this condition. I think there’s some element of structural sexism that leads doctors to dismiss women and their hormones.

Hillwoman
Hillwoman in reply to Mike77

Thank you. It's good to know some men do recognise the structural sexism in the NHS.

I do hope you find the help you need. Do you need a statement from an endo about your need for T3 in order to support an application for medical retirement?

Mike77
Mike77 in reply to Hillwoman

It for medical retirement, I’m three years away but can’t see myself going back to work with thyroid still giving me grief and my lungs now fried by Covid. Bizarrely they would give me T3 if I asked but I found it made me too mentally unstable. What they won’t do is write down I don’t fully recover on T4 only. I’ll just go private I guess. Recommendations via private message welcome 😊

Hillwoman
Hillwoman in reply to Mike77

Ok, I'll be in touch.

DippyDame
DippyDame in reply to Mike77

Have you had the genetic Dio2 test ?

You already know your conversion is poor but sticking written proof under their noses might persuade them/your GP of your need for T3 (even if you self medicate) and support an application.....especially if the result is homozygous,

Rotten luck to catch C-19, might that not also support an application

Hope you feel much improved soon

Best..

DD

My daughter and I both have the DI02 genetic problem. But the NHS 'specialist' that the hospital endo took advice from (because she'd never heard of it!) insisted it made no difference, so it has never been taken into account for either of us. Actually my daughter has never been able to get a hypothyroid diagnosis despite a pulse rate of 50 and low temp etc. So frustrating!

What a mess thyroid care is in!

Have you though of private testing, given the poor state of NHS testing many of us go down that route

This might help

thyroiduk.org/getting-a-dia...

Medics seem to rely on basic tests without considering symptoms....TSH and FT4 at a stretch. They avoid the critically important FT3 test!

Most endos are diabetic specialists who often know little about the thyroid....the one I saw certainly didn't!

If you get test results, you can then post them here and members will suggest a way forward -

TSH

FT4

FT3

Folate

Ferritin

Vit D

Vit B12

Conversion is supported by having optimal nutrient levels (above) Have you had these nutrients tested?

If you inherit the Dio2 polymorphism from both parents ( as I did) research indicates this results in further impaired conversion but there is a reluctance amongst medics to accept this. My endo did know this....but left me to self medicate because he thoughtI knew what I was doing. Just an escape route for him I think!

If you have the variant you most likely need T3.

Can you ask to see another endo? You should really be properly medicated!

Best...

DD

Mike77
Mike77 in reply to DippyDame

DD, I am so lucky with my GP who routinely carries out a whole range of tests including T3 and nutrition.

DippyDame
DippyDame in reply to Mike77

Great...can we clone him!

Be well

Lora7again
Lora7again in reply to DippyDame

Cloned doctors that is horrible thought! lol I do know what you mean 😉

Mike77
Mike77 in reply to Lora7again

I’ll take that over the robot I spoke to

BrynGlas
BrynGlas in reply to DippyDame

Genetic DIO2 test??? What on earth is that please?

DippyDame
DippyDame in reply to BrynGlas

A brief explanation -

thyroiduk.org/getting-a-dia...

shaws
shawsAdministrator in reply to Lora7again

It also seems that there are no options other than levothyroxine. They have ignored all scientific evidence that T4/T3, or NDT, or T3 alone can improve people's health.

Mike77
Mike77 in reply to shaws

Yes Shaw’s, and thanks for all your advice when I first got diagnosed.

shaws
shawsAdministrator in reply to Mike77

I have been so fortunate in consulting with Dr Barry Peatfield (He was very ill and I think he has since died). I also consulted with Dr Skinner - he was another doctor whose patients recovered (for this He was pursued by the 'authorities' for treating his patients to recovery and had to appear before the GMC and the professionals didn't like the fact that he would prescribe NDT or other hormones to help his patients recovery. Dr Peatfield wrote a very popular book 'Your Thyroid and how to keep it healthy : The Great Thyroid Scandal and How to Survive it.

amazon.co.uk/Your-Thyroid-H...

Both doctors were pursued by those you'd imagine would have known better but who knew and still know less than these doctors together.

BrynGlas
BrynGlas in reply to shaws

Is the thyroid scandal book only available from America? I prefer not to use Amazon and at the moment it is only available on eBay from the states and using the dollar to pay for it.

Or another UK sources for it by any chance?

shaws
shawsAdministrator in reply to BrynGlas

From Thyroiduk.org.uk (who are behind the scenes trying to change medical attitudes).

thyroiduk.org/product/your-...

BrynGlas
BrynGlas in reply to shaws

Thank you Shaws I have ordered one .

BrynGlas
BrynGlas in reply to Lora7again

Same here, I have never seen one yet.

shaws
shawsAdministrator in reply to BrynGlas

thyroiduk.org/product/your-...

As one who works on workers compensation cases in the US, I can think of 2 possibilities. One is that this f Di ofor is simply not into writing reports g F or the purpose of supporting public or private benefits, or he does not think your problem is thyroid related. See a rheumatologist and a pulmonologist to find out what is wrong . Or you may simply be stuck with after effects of Covid. No one can predict now how long that will last it if it is permanent.

Is this reply meant for Mike77?

Thanks Veteran, yes they really don’t seem keen to write anything so I’ll go down the mental health route and get a report there. Just strikes me as odd that the endo was so anxious about even acknowledging that some hypothyroid patients complain levo doesn’t work. It’s not my opinion it’s a empirically recorded piece of scientific evidence (he might like to read Professor J Jonklass’s 2017 paper, she’s a former adviser to the Americans endocrinology Assoc, I could list loads of others). These papers don’t say they believe us or what causes our persistent symptoms or whether T3 or something else would help. But they state unequivocally that we exist and make up about 15% of cases. Now if I can write that why can’t a doctor?

If you didn’t laugh you’d have to cry. What a contradictory tw*t. How did he keep a straight face? 🤸🏿‍♀️🥛😂

Mike77
Mike77 in reply to MissGrace

Thank god for Covid, it was a phone consultation so I could pull groaning faces and eye rolls to my heart’s content.

Sorry, I wouldn't call that a chat, rather an exercise in "head banging against a brick wall"!

The endo I saw dug himself into a deeper hole with every explanation,aka excuse, he offered.

"Just can't" sounds like a petulant child who is lost for words, nor a highly trained adult!

Why don't good medics train as thyroid specialists, it puzzles me.....there must be a reason because good, highly skilled medics do, as we all know, exist!

I have RTH, need a high dose T3 and self medicate....medics were clueless

Without TUK guidance I would now be a wreck....or worse.

Sorry I'm ranting but this kind of treatment is inexcusable!

Hope things improve for you

DD

Mike77
Mike77 in reply to DippyDame

Dippy, there ain’t no money or fame in it. Mostly it’s just saying TSH is X here have a 10p levo pill. And we don’t die or have health dramas. Just get tired and miserable. We should have a got a sexier illness.

shaws
shawsAdministrator in reply to DippyDame

Unfortunately the Endocrinologists have to 'toe the line' even if they'd like to offer alternative prescriptions.

I think a number of members on this forum could set themselves up as 'healers' due to the excellent but, more important, sympathetic and helpful comments.

DippyDame
DippyDame in reply to shaws

I agree, but a good "bedside manner ", a bit of empathy and a degree of honesty wouldn't go amiss.

If they don't know or cannot help they need to say so.....saying "I just can't" as happened to Mike77 leaves the patient in limbo and possibly very stressed. And no further on

Honesty breeds trust.

I once saw a GP who went greatly up in my estimation when he told me that he just didn't know. (about T3)...and I told him so!

If it wasn't for the "healers" here I'd most likely now be bedridden like my maternal grandmother.....how many patients are suffering similarly because they lack appropriate care. Shocking!

Take care

DD

Mike77
Mike77 in reply to DippyDame

It is so odd isn’t it, when they say we have fatigue maybe they don’t see what that looks like in real life At times we are bed ridden, depressed to the point of despair, so brain fogged we cant count money or remember the name of people we know or so cold we can’t get warm. My hypothyroid symptoms were sudden onset so came flying into my life over a few weeks. I remember getting lost going to a shop two streets away and standing not knowing how to get home. I was in severe muscle pain and suicidally depressed. An assessment letter said something like this lovely gentleman is feeling a little run down. Just wish we could show what this thing is like when not treated proper.

tattybogle
tattybogle in reply to Mike77

I once saw some of my hospital notes before an operation . it said "mild systemic disease, adequately compensated " to describe my hypothyroidism.......( which frequently leaves me staring blankly at carrots in shops for 5 minutes, or having to 'phone a child to carry the shopping home , and has cost me job, hopes and dreams, and financial security.!)

I've never felt so insulted.

Mike77
Mike77 in reply to shaws

Hi Shaw’s, first NHS endo I saw a couple of years ago quickly said we believe some people may still be symptomatic on levo but we are not sure why and the evidence is not there. We do prescribe T3 but only cautiously as the evidence is poor and only after really trying to optimise T4. I thought that was very honest and grown up and very non patronizing. So some good guys out there.

shaws
shawsAdministrator in reply to Mike77

I believe there are many good doctors and endocrinologists but their hands are tied if they cannot prescribe other than levothyroxine.

Liothyronine from online chemist £279.99. Levothyroxine 12.5mcg £32.99. 25mg, 50mcg, 75mcg,100 all £37.99 for 28 pills.

SlowDragon
SlowDragonAdministrator in reply to Jenny583

NHS pay £1-£2 per pack of 28 levo

T3 - NHS obviously getting ripped off at £170 for 28 tablets ...

Cheap as levo in other countries

Jenny583
Jenny583 in reply to SlowDragon

True! I just ordered 100 x 25mcg online for £30!

Parody103mg
Parody103mg in reply to Jenny583

Jenny583 Could you PM me please about where you order your T3 from. Thanks.

Merlio18
Merlio18 in reply to Jenny583

Hi can you pm the link to where you ordered T3 do you need a prescription ?

Katurajo1
Katurajo1 in reply to Jenny583

Could you pm me as well, my source has been out for a few weeks

Golli
Golli in reply to Jenny583

Hi Jenny583,

I know others have asked you too, but I would be so grateful if you could p.m. me with info of where you source your Liothyronine and if you need a prescription?

Thank you so much.

Jenny583
Jenny583 in reply to Golli

I will DM you as per the forum rules OK? x

Golli
Golli in reply to Jenny583

Thank you so much.

Rhule
Rhule in reply to Jenny583

Jenny

Would you kindly pm me please where I can get T3 from

Thankyou

Jan x

HiddenThis reply has been deleted
Rhule
Rhule in reply to Hidden

Thanks Jenny

Appreciate you replying

I am going to try and get an appointment with an Endo and take it from there

You take care too

Jan x

Jenny583
Jenny583 in reply to Rhule

Good idea, hope you get what you need, and get healed. x

Rhule
Rhule in reply to Jenny583

Thanks

But no doubt I am in for a rough ride 😊😊

Cheers

Jan x

Jenny583
Jenny583 in reply to SlowDragon

£279. 99 for 28 of 20mcg versus open market at £30 for 25mcg 100 tabs...

A friend who is not able to convert t4 to t3 was put on Levothyroxine & was made worse than B4, for 32 years she was crippled & told she had ME, recently fought & won the right to Liothyronine through a bright Endocrinologist Endo was then booted out.

New Endo - (a locum from UK) gave her script for 15 mcg of Liothyronine which she took to chemist. She knew the chemist, he told her that 15mcg of Lio is £400, & suggested that he issued 20mcg instead - like she had B4.

I think the Endo meant well, & just did not realise the hidden costs in the thyroid hormone racket. Good job she knew the chemist, as she is crippled with the complications of a lifetime of neglect as it is !

I have wondered why the NHS don't get it cheaper. When I worked in a hospital pharmacy we were told who we had to buy the drugs from and sometimes they weren't very good suppliers and we would be forever chasing orders.

Mike77
Mike77 in reply to SlowDragon

Yep, I’ve bought before in Greece for 3 euro for 28. Pharmacists even offer to order it in for you on little islands.

So sorry to hear you've been 'nobbled' by covid.

Your Transcript reads like a conversation with a toddler (him, not you :) )

Perhaps if you get bored in enforced retirement you could collect "End'o'Logic" conversations and write a script for a hit sitcom........ sort of "Yes Minister" ... but "Yes Endo" ?

Last time my GP ran out of logical arguments he resorted to "you'll die"......

Looks like you'll have to write your own letter quoting the 15% bit from the small print in the NICE Guidelines for Thyroid disease. Or just go with the 'Long covid' lot who are in the same boat without having had previous thyroid probs.

Have you read the stuff by Prof Paul Garner in BMJ ? Link to his blog is half way down this thread.

healthunlocked.com/thyroidu...

Mike77
Mike77 in reply to tattybogle

Hi tattybogle, yes I’ve read the Paul Garner paper. It’s very weird and only just getting media coverage now but there are thousands of us with pretty debilitating long term symptoms. On the online support groups there are lots of previously high functioning people shocked at being dismissed as anxious by doctors or being told it’s just post viral fatigue because tests are normal. At least I have a good GP who is prepared to investigate my new symptoms.

tattybogle
tattybogle in reply to Mike77

It helps to stay with a gp who knew you 'before'.

I got a much better attitude from the one who knew 'the old me', even though he couldn't fix me.

Ever since i was forced to change cos i moved house, i just get talked too like i'm scared of exercise , or don't want to get better, or am a bit mad.

the fact that i AM a bit mad doesn't help of course !, but i used to be a bit mad and very fit.....

bookish
bookish in reply to tattybogle

That is depressingly, so true. I moved, lost a doctor who wasn't great but tried, and knew me, and have had nothing but grief since. A hypochondriac idiot with 'medically unexplained symptoms syndrome' (but now have a neuro who might actually be going to help!!) Mad is good...I'm practising. Best wishes

Thats a frustrating conversation! Post viral syndromes from Covid are proving more and more common now I would suggest you go down the medical retirement route from Covid related illness it might be easier to get some sort of documentation for that perhaps?

Mike77
Mike77 in reply to Karenk13

I’ve accepted a diagnosis of chronic fatigue. I don’t believe I have it but it’s easier than insisting on hypothyroidism as the original cause of my symptoms. It does feel like a weird thing to have to do.

Sallybones
Sallybones in reply to Mike77

I realised that sometimes you have to go down one avenue with 'them' to get to another. Stupidly shortsighted of the NHS and a waste of all our times and money. I come across a lot of text book health people on my journey.

Hope you find your way through this Mike.

DippyDame
DippyDame in reply to Mike77

Chronic fatigue syndrome...

It seems my problem is genetic, symptoms began to emerge in my late 20s.

After loads of tests and treatments (NHS and private) I eventually had diagnoses of both CFS and FM but I was never convinced and 20 years ago requested a thyroid test, it was positive and being the trusting patient accepted increasing doses of levo...reached 150mcg.

I never felt well but plodded on until by the age of 70 I could barely function and I realised that if I didn't start researching I could spend the rest of my life bed bound as happened to my maternal grandmother who ( only) had a diagnosis of Fibrositis (now FM/CFS. I didn't know enough then to join up the dots!

I knew I was hypo so started there, that led me here and helped me find the answers that medics failed to find.

Levo was making me ill!

My Dio2 test was positive and homozygous which further affects T4 to T3 conversion.

So, I spent months titrating T4/T3 with little success so I decided T4 had to go. I began T3 only and self medicated

I very slowly increased T3 and initially had no success....I monitored BP, heart rate and temp daily for signs of overmedication....none existed. I had by then reached a fairly large dose which signalled RTH

From my reading I knew then that I must have a form of RTH (thyroid hormone resistance) so I continued increasing T3, by this time a supraphysiolgical dose, which in "normal" circumstances should have made me very ill....it didn 't! But my symptoms remained! By this time my test results showed high FT3 and little else. l learned that was OK only with RTH.

Confident that (as a result of my own research and much support from here) I was on the right track I dosed by symptoms and on a dose of 200mcg I have slowly started to improve. I'm sticking with 200mcg meantime but feel there is room for a further increase, and yes I sometimes did feel very strange during the titration period.

I'll be 75 soon but if I hadn't found this wonderful TUK forum with experienced and highly knowledgeable members I may not be here now!

The moral of this rant is that sometimes you just have to take control, you know your body better than anyone else.....and especially better than a tick list on a medic's screen! And, if all else fails try what Paul Robinson calls the last resort....T3 only.

But first you must optimise folate, ferritin, vit D and vit B12 then test the full thyroid panel. The results should help point the way forward ....with caution!

Without any test results for you, but with your poor conversion I suspect your FT3 is below the (approx) point 75% through the relevant reference range! Can you check this out?

Research has found that low T3 is a cause of CFS.!

frontiersin.org/articles/10...

On the other hand remember FT3 measures the serum level, this T3 needs too enter the tissues before it gets to work. Tissue level cannot be tested.

However if there is a form of resistance i.e RTH, insufficient T3 will reach tissue levels leaving serum level high and the patient symptomatic. Excess serum T3 is eventually excreted by bladder and bowel. This is when a large dose of T3 is required

TSH, FT4 will be low and FT3 will be high following high dose T3

The whole current thyroid treatment protocol is madness!

Right now you must be feeling low and your medics need to understand this and realise that being close to retirement the best thing they can offer you is medical retirement to allow you the time to gain your strength with as little stress as possible. Does it dawn on them that offering you this route may save the NHS money in the end!!!!

Rant over!

Best...

DD

Hidden
Hidden in reply to DippyDame

I was relieved when my endo wrote a letter to GP saying - CFS caused by low FT3. I almost cried!

DippyDame
DippyDame in reply to Hidden

That is great....maybe some of them are now listening to the science!

Be well

Hi Mike

I don't have thyroid problems but I'm in the same boat as you ,I really wonder if these so called experts actually know what they are doing.like you I too seem to racking up weird and rare diseases that I've never even heard of ,and I'm still no further into discovering why I have a permanent headache because they don't like labelling patients.after 4 years of this I just want some answers,luckily my endocrinologist that I met for the first time last week seems to be really nice and understanding.l really hope you find a better endocrinologist and get the support and treatment you need.

Mike77
Mike77 in reply to Merlinmog

Thanks Merlinmog, tbh my diagnosis is pretty straightforward. I have unresolved symptoms of hypothyroidism plus new symptoms due to covid 19. It’s some of the medics I’ve seen who want to complicate the picture by deciding I can’t have symptoms from treated hypothyroidism so must be mentally ill. Medics are seeing much more long term symptoms from covid so are a bit more understanding that this is real. Originally lots were told you aren’t ill you are anxious. But they were dealing with some terrifyingly Ill patients and a new disease so I can under that a bit more than endocrinology still not understanding a very common illness decades after was supposed to be routine.

Merlinmog
Merlinmog in reply to Mike77

Hi Mike

Thank you for taking the time to reply my so called diagnosis isn't so straight forward I have a low cortisol ,empty sellar syndrome and a narrowed sigmiod sinius.I also have lupus and most the associated things that go with it, at one point they wanted to refer me to mental health as they thought I was making up my symptoms this was just before I was told I had lupus and I ended up in intensive care for 10 days.sometimes I find this journey we are on so frustrating and people don't think outside the box when diagnosing us,everyone is unique and we all deserve to be treated with compassion.

That’s bad practice, if not malpractice, to ‘Sell’ you treatment under the pretence that it will work (which he clearly doesn’t believe will) Can imagine how that line of questioning would go down in a court of law?

Mike77
Mike77 in reply to Loafinabout

Hi Loafinabout, I get the impression he’s a junior doctor and was a bit out of his depth. Feel a bit sorry for him. A new consultant runs the service and is a diabetes expert. Think he just has no interest in malingering hypothyroid patients who refuse to get better.

I feel so bad for you but it’s been my experience almost my entire 25 yrs of having thyroid disease. One decided to experiment on me in Feb and it’s resulted in me having a tsh of 41.5. . This time I am going to put an official complaint in . If I can figure out how to write without rambling. If you like me you will get yourself where you need to be but the medical profession needs a serious shake up. Stay as well as you can. X

Mike77
Mike77 in reply to DeeD123

DeeD, that’s shockingly high TSH.?I hope you are feeling better. Good luck with the complaint.

DeeD123
DeeD123 in reply to Mike77

More bloods today but no appointment to discuss the results. I’m dosing myself as to how I’m feeling with no guidance at all from what’s considered a top team. I am just sick to death of having to put up with dangerous stupidity. Thanks for your reply. X

Have you seen breaking news this morning on Covid19 Mike77

Coronavirus can have lasting effects, "identified in patients in Northern Italy " - symptoms include psychosis, fatigue, insomnia, kidney disease, spinal infections, fatigue and mobility issues.

Two family members are back at work after the illness but still have fatigue, and sleeping a lot at weekends.

Mike77
Mike77 in reply to Polaris

Thanks Polaris, I hadn’t seen it but will check it out.Hope your family is over the worse of it soon.

Polaris
Polaris in reply to Mike77

Thank you Mike77. I hope you improve soon too.

COVID-19 many people are experiencing symptoms months after being infected. Difficulty breathing is likely to be still sitting on your lungs. The NHS/GP's or Government whoever needs to take the lead and give people follow-up check-ups. This is happening for those that were admitted into hospital. See your GP, telephone or otherwise, you will need a chest x-ray at the least. There are other side effects as well like reduced Testosterone which is linked to erectile dysfunction and low sperm count. I suspect there are other things going on that are likely to come out later. This will all affect how you are feeling.

So assuming this was just a telephone appointment, have they done any blood tests?

Well I have been in the exact same position with endos so know exactly how frustrating and distressing it is and the conversations went just as brain numbing as yours to the point where I was having allergic type reactions to both levo and the brand of T3 he prescribed me and when I asked for the only T3 brand I tolerated well and got my life back on bare in mind I also have diagnosis of me/ chronic fatigue and fibromyalgia and hormonal issues and only in my early 30s he refused because he wasn't insured now it's blacklisted to give me a prescription in the community and if I died he would get blamed so he didn't trust me and dismissed all my photos showing proof of my reactions ??? Trust me to take the only drug that got my life back yep that's logical !?!?! Yet I was well on it for several weeks until I ran out of pills when I took my self off both the drugs he was prescribing me because I couldn't tolerate them anymore and had actually a normal life untill I ran out of pills all my symptoms reduced dramatically so then he left me with NO medication and I ended up being very ill for 6 weeks off work untill I self sourced NDT and now iam functioning but still have symptoms as I can't convert properly due to hormonal issues so I looked into homeopathy and naturopathy as the NHS don't care about thyroid patients long time symptoms as long as they tick their box and give us a cheap pill they have done their job so to me the only way is holisitic as all NHS endos I have ever been too are black and white robots who don't look outside the box and have no sympathy or compassion he ended on my consultant saying his kids where more important and he needed to go home! Which says everything doesn't it.

I wouldn't go down the endo route for retirement even tho alot of your symptoms will be due to covid combined with having thyroid disease you need to find out if you have high antibodies markers to see if you have Autoimmune disease or not so iad get a private blood panel if you don't no them already and then go down the covid route and look into a functional medical doctor/ naturopath and self source T3 in the mean time.

Just to add I made a complaint about my treatment to NHS England and it was a complete cover up they don't do anything but protect the endos and say you have to find another endo if he is not willing to prescribe it knowing full well no endo if willing too now it's been blacklisted the only thing people should be doing is complaining to MPs and the ombudsman to highlight the MIS treatment as then they might take note if more people complain unfortunately I was to ill to complain to the ombudsman in the time frame I had to write a report.

Mike77
Mike77 in reply to Merlio18

Gosh! What can I say. Poor you Merlio

I realise that the T3 issue is one that beyond most endo’s ken these days and this causes much frustration to many here. No comment on this because my Hashis is part of a wider autoimmune spectrum and doctors/ endo now listens to me when I say I need to raise or lower dose of T4.

But re the post Covid ME and early retirement - have you thought that this virus might have given you a systemic autoimmune disease rather than causing anything thyroid related to change?

I ask this because, as someone who has had autoimmune diseases since infancy - I now see all sorts of people suddenly complaining, post Covid19, of symptoms that those of us with systemic and neurological autoimmune diseases have been suffering from for many years.

Many with Lupus, Vasculitis, Sjögren’s, RA and Scleroderma were already hypothyroid and then along came a bout of flu or pneumonia and wham bam. Often then misdiagnosed as Fibro or ME (or worst of all a conversion disorder known as ‘FND’) we languish, breathless and very unwell, in the underworld of the undiagnosed or misdiagnosed until finally we fade away or hit lucky with a good neurologist or rheumatologist or a great doctor from other specialism or GP - or just a chance investigation shows we have something that has biomarkers of a systemic autoimmune disease - often rare or even very rare - and bingo we are at last back on right track.

Sp please don’t just assume, as a “long hauler” - that all your symptoms are down to ME and ongoing thyroid problems. Read up about other forms of immune dysfunction or autoimmunity that can sometimes be triggered by any virus or underlying illness. You may be a chap so get taken more seriously and not have to serve time in diagnostic wilderness (5-7 years on average for connective tissue diseases such as Lupus and Sjogren’s - both of which often affect the lungs - as does Vasculitis) in the way that many with autoimmune diseases do. But then again, from the vantage point of much experience on related forums, maybe not.

Hillwoman
Hillwoman in reply to 282523

Good points. I've developed additional autoimmune conditions after nasty infections, e.g. real flu, and adult chicken pox. CP can be much more dangerous when caught in adulthood.

Mike77
Mike77 in reply to 282523

Hello there, Tbh I’m trying not to wonder too much at this stage. I developed hashimotos following an infection and vaccine (I’m not an anti vaxer btw) so I know viruses can mess up the immune system. Problem with covid is it can affect neurologically, mess up blood clotting, damage capillaries, damage red blood cells, cause heart problems and fry the lungs. That’s before the mental trauma and organ damage. So I’m trying not to self diagnose and get preoccupied. At the moment I’m concentrating on lung rehab and on follow up cardiac and blood pressure changes.

282523
282523 in reply to Mike77

I do know what you mean and I’m all for avoiding self diagnosis myself.

However I read people’s descriptions of what Covid can and has done to them and think to myself that this is pretty much what I and many others with neurological and rheumatic diseases have lived with for years. You might just as easily have written: “Problem with (systemic autoimmune diseases) is (they)can affect neurologically, mess up blood clotting, damage capillaries, damage red blood cells, cause heart problems and fry the lung”.

Mine have done most of these plus to me over the last 9 years and yet many of us have had terrible trouble getting diagnosed and accessing any of the support that you are at least receiving post Covid. In fact the research, clinical psych services, physiotherapy, rheumatology and immunology services we are endlessly waiting for have now been redeployed, clinical trials stopped, resources reallocated. The fatigue associated with these diseases is horrendous and yet few of us receive any acknowledgment of this on clinical letters let alone help with managing it. Same goes for many with ME. I have likely pulmonary hypertension with early lung fibrosis and yet have waited 10 months for an echocardiogram to confirm.

The few people I know with my rare autoimmune diseases who have suffered from Covid (many of us have fallen into the shielding group so less likely to get it) have found it hard to know that they even had Covid because it just felt to them like another flare up. One young woman I know contracted it from a paramedic on the way home from 2 weeks in intensive care with septic pneumonia caused by her autoimmune diseases. So she then had 2 weeks in quarantine with Covid - which felt much the same to her as what she’d just come back from hospital with.

So I can see maybe why endocrinologists might be focussing most of their energies on Diabetes and perhaps diseases such as Addisons - given the strong association with these diseases and Covid?

Mike77
Mike77 in reply to 282523

Yes I agree they must be overwhelmed by diabetic patients at serious risk. Is your condition treatable?

282523
282523 in reply to Mike77

Yes I admit I did just feel some sympathy with this Endo when you described your conversation with them!

My diseases are Sjögren’s (a very neurological presentation) and Systemic Sclerosis plus a rare immune dysfunction disorder. There are no really effective treatments for either of these although I’m on an immunesuppressant and having horrible infusions to slow down ulceration and prevent pulmonary arterial hypertension associated with Scleroderma. Research into both diseases is desperately needed. My rheumatologist was redeployed for the duration of lockdown and I’ve been shielding so it’s been very hard to access physical or emotional support.

Mike77
Mike77 in reply to 282523

Goodness 282523 that sounds so tough. Just wishing you some strength.

Hi Ann, at least with the covid I’ve had great help from my GP who has arranged tests, referrals and prescribed some useful meds. I’m currently waiting cardio investigation and pulmonary rehab, I’m also getting support managing fatigue. I know from online covid support groups lots aren’t so lucky, but at least for covid and fatigue the help has been great.

I don't understand how people can be so incompetent in their specialist subject. From the extremely varying experiences I have had with the SAME endo (private once and NHS a couple of times but the same person), I get the impression that they know better but are ordered to follow the country guidelines which put money first. This endo pleasantly surprised me when I first saw him, saying some GPs were sticklers for the rules and didn't look beyond that to symptoms. Another time he said T3 was needed by some and if I didn't feel better on the increased levo he would look into trialling that. Next time, I was told, in front of two students that T3 was irrelevant and it's TSH that matters. After going through similar crap in another medical category for my son, I am losing all respect for all medical people in this country. Honestly, growing up in a third world country, the medical world was far superior with consultants that kept investigating and going till they made you as well as possible, not just trying to get rid of you ASAP and half heartedly treating symptoms without bothering with investigations, which has been my experience for years here.

Mike77
Mike77 in reply to QandA

Jesus, does you head in. I actually don’t want T3 right now. I tried it for a year with next to no dosing advice when it was prescribed by the same endo dept. I just wanted him to acknowledge that I’d tried all treatments, that I still said I had problems and that this is a controversial phenomena, not understood but is described as a recognised clinical presentation in the medical literature. I.e tell the truth.

tattybogle
tattybogle in reply to Mike77

It seemed to me at the time , that getting the little gem about 'accepted that 15% don't do well on Levo', included in the NHS guidelines, was one of the most powerful thing's that came out of all the hard work done by everyone to get the latest thyroid guidelines to be fit for purpose.

NHS did include it (through gritted teeth i imagine), but then of course , buried it in the small print, with a recommendation that further research was needed on combination therapy.

Being a cynical so and so, my next thought was ' Yes , and you're going to make damn sure that any further research shows it's still not proven , by only acknowledging research that tests the wrong people using the wrong dosages for too short a time '

Any Endo or GP who confirmed the 15% exist, in writing, would sooner or later be in for a hard time from colleagues/bosses as a result.

Because if they admit there's a still a problem, we have a defence against the 'it's all in your head' tactics.

So i believe they are hoping it wont be noticed by many.

And on that basis , i believe we should all keep asking about it loudly at every opportunity.

15% is a lot of people.

A lot of us are on here.

Mike77
Mike77 in reply to tattybogle

Yes, but at least it’s now written down.

tattybogle
tattybogle in reply to Mike77

Journey of a thousand miles starts with one step.......now we just need to get an Endo to write it down too :)

Nice try though, i bet he was sweating !

It's not unusual for many of us when we see an Endo to have this sort of conversation.

Pleased that you are through the worst of the Covid -19 but there is mounting evidence that some problems are going to last for months if not longer.

I hope you can get some help.

Mike77
Mike77 in reply to teacherspet

Hi Teachers pet, thanks for the kind wishes. I’m just 16 weeks post covid and can vouch that it lasts a bloody long time! Still short of breath but so much better than earlier.

I do medical research, but I also Had Covid-19 (and have Hashimotos pretty badly). I think the disease may deplete the body of magnesium. Magnesium is involved in 300 or so enzyme reactions in the body including the uptake of oxygen from the lungs. Go to google scholar and then google "review subclinical magnesium deficiency : a principal driver of cardiovascular disease and public health crisis. there is a list of disease magnesium deficiency causes and chronic fatigue is on. Also many of the other things people have been having post Covid. One being something I have had since the disease. Just supplement with magnesium citrate at high doses as bought in capsules on ebay. The sort I got was vitalityvits 300 mg and I am having more than one, 4-6 for a month or sop. then I will have one a day. I did tell my GP. I am not the only scientist who suspects this. Unfortunately doctors lean next to nothing about he role of vitamins and minerals in the body. I think they get about half a day on nutrition in their whole training. minerals are very important and lack can cause serious diseases. For instance, a principal cause of anorexia is zinc deficiency and people just don't know.

Mike77
Mike77 in reply to JuliaWM

Julia, that’s so kind of you to share and do practical. I’ll get some today.

HiddenThis reply has been deleted
Mike77
Mike77 in reply to Hidden

Hi Fantik, yep iron all good. Some people post covid report anaemia though.

HiddenThis reply has been deleted
Mike77
Mike77 in reply to Hidden

Oh right Fantik, sorry didn’t know that, does it need a B12 test? Think mine was ok when checked aim Nov.

HiddenThis reply has been deleted
Mike77
Mike77 in reply to Hidden

Will do

Oh Mike! I feel your pain a zillion times over (read about my recent upsetting meeting with an endocrinologist here: healthunlocked.com/thyroidu... )

I am SO sorry you had to go through such a frustrating appointment.

I’m also still suffering symptoms from COVID in March (ongoing inflammation of the heart and also breathlessness amongst others).

There are some Long COVID support groups on Facebook which you might find useful.

In the meantime, Sending hugs xx

Mike77
Mike77 in reply to Abi-Abster

Thanks Abi, hope you are on the mend. I use the Slack covid long haulers group to moan and share info. Take care.

Abi-Abster
Abi-Abster in reply to Mike77

I’ve heard of that group but haven’t joined it yet. Thanks for the reminder!

I find what’s interesting about COVID is The number of people who have never had thyroid issues before who are now being affected.

I guess in a way we at least have half an idea of how to look after that aspect of things!

Wishing you well x

Mike77
Mike77 in reply to Abi-Abster

Hi Abi, we also have the advantage of being used to long term symptoms and being dismissed as anxious. I think some of the very ill Slack UK Covid long haulers have been shocked by being told in A@E they are just anxious or post viral or that no services or tests were available. I suppose at least I had a more realistic idea of what the NHS can offer. They had the double whammy of services being closed and acute hospitals being stretched with critically ill people. If Holby was real most episodes would involve people being told they are anxious and no one knows what their symptoms are.

bookish
bookish in reply to Mike77

Just in case you or anyone else finds it useful here is Micki Rose's virus page - lots on prevention but some on recovery towards the bottom purehealthclinic.co.uk/2020... Best wishes

shaws
shawsAdministrator

I'm glad you've recovered for Covid and it must have been a horrible experience.

Mike77
Mike77 in reply to shaws

Thanks Shaws. I can truly say it was pretty awful. At about week four I just felt like I couldn’t get enough air because the virus messes up the blood and lungs. I’ve improved since then but this is 16 weeks today and I’m still weak and breathless and have been given steroids and blood pressure meds. It must be horrendous for those who needed ventilation. It really is serious so I wish you well and please keep staying safe as the UK unlocks.

Heart breaking isn't it?

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