Appointment as aspected 😢: As expected, I got... - Thyroid UK

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Appointment as aspected 😢

HypoFrog
HypoFrog

As expected, I got nowhere.

Consultant apologised and said he knows it’s frustrating but as results are in range, he can’t do anything.

He said normal range is the average range of the normal population and I’m in that range for everything so as an endocrinologist, he can’t do anymore. Said the people in your thyroid forums will all be the ones who are still suffering with symptoms, they’re not the majority of thyroid patients who are treated with T4 and are fine.

Annoyingly he said the TSH is the main thing that tells him something, not the T3.

I did however find out that I had the TPO antibodies before I had RAI and they were sky high so that’s why I still have them but they mean nothing.

So I said what now then??

he said he will write to my doctor and recommend investigating for chronic fatigue and treating the anxiety after listening to my main symptoms. ☹️

63 Replies
oldestnewest

I’m so sorry HypoFrog and totally understand your upset/ frustration.

I would definitely take responsibility for testing into your own hands, then you have an accurate picture of your thyroid health (including T3). I use Medichecks and tests are often discounted on Thursdays. Post results on here and then you can email your Endo with results/ comments and questions suggested by forum members. It has taken me several visits to Endo and lots of emails showing private bloods to get my dosage changed.

Best wishes to you.

HypoFrog
HypoFrog in reply to Buddy195

Thank you. Think he’s probably discharged me now so not sure how it works with still being able to contact. Thinking of going private now, it’s just the cost.

Buddy195
Buddy195 in reply to HypoFrog

The first Endo private appointment I had cost more than subsequent ‘follow up’ ones. Definitely don’t do any tests via private endo as these will cost more than Medichecks/ Blue Horizon. Not worth you considering seeing private endo this until you have T3 results.

HypoFrog
HypoFrog in reply to Buddy195

Thanks. I think first step is I need to get my vitamins etc right. All my results are low range especially B12 so 2021 is the year I take control! 🙌

Buddy195
Buddy195 in reply to HypoFrog

That is a terrific plan 👍😊I can’t tell you how much better I feel after following advice from SeasideSusie , humanbean and other lovely members to get key vitamins optimal. Going gluten free also really helped.

You are not alone, so remember to keep posting fir further advice or support

HypoFrog
HypoFrog in reply to Buddy195

❤️❤️

pennyannie
pennyannie in reply to HypoFrog

So I'll uncross my fingers now -

So having been there myself and listened to the same dogma all I do know is that T3 is more important than a TSH and after drinking the toxic substance and having had RAI thyroid ablation nothing is ever " normal " again, despite what blood test levels may look like.

It's just so upsetting, sitting there listening to someone reciting a NHS script : isn't it :

You are not alone and s/he is probably reciting this dogma to every other patient and a referral to chronic fatigue keeps another bunch of people in a job.

Yes start working on your core strength taking back some control of your health :

I find I feel better when my ferritin is at around 100 : my folate 20 : my serum B12 500 + ( active B12 70 + ) and my vitamin D at around 100 :

It took me over a year to build these up and I was also reading Elaine Moore's first book, Graves Disease a Practical Guide and research on her website :

Another " goto " is Dr Barry Durrant-Peatfield's book - Your Thyroid and How To Keep It Healthy.

This is available on the Thyroid UK website, where there is also much to read and it is this charity who supports this amazing forum, so I joined up, and receive regular updates on everything " thyroid " :

I then started supplementing adrenal glandular and felt a benefit and I do still take these along with Natural Desiccated Thyroid.

It is a slow build but you can do much for yourself, with a little knowledge and the support of this forum you too can help yourself recover your " self " :

HypoFrog
HypoFrog in reply to pennyannie

Thank you so much ❤️

pennyannie
pennyannie in reply to HypoFrog

Be kind to yourself - none of this is your fault - and you can turn things around for yourself when you feel ready :

SlowDragon
SlowDragonAdministrator in reply to HypoFrog

First step is to get ALL four vitamins optimal

What vitamin supplements are you currently taking

Only add one supplement at a time and then wait at least a fortnight to assess before adding another

Going absolutely strictly gluten free diet to kid likely to help or be essential

6-8 weeks after adding last supplement/going strictly gluten free

Getting new FULL Thyroid and vitamin test done via Medichecks or Blue horizon

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS

Always do thyroid test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

Meanwhile email Thyroid U.K. for list of recommended thyroid specialist endocrinologists who will prescribe T3, if you need it

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

What a mealy mouthed useless endo yesterday.....put it behind you .....Onwards and upwards

There’s 2 million U.K. patients on levothyroxine, so even if only 10% don’t make full recovery on just levothyroxine.....and estimates are more likely 20% ....that’s 200,000-400,000 people

HypoFrog
HypoFrog in reply to SlowDragon

Thank you. Ive got loads of advice from you and others on here now so I just need to gather notes and create a plan and record it all. It can be overwhelming but I will take it step by step and I know I’ve got the support of the wonderful people on here. Thank you ❤️

Espeegee
Espeegee in reply to SlowDragon

The consultant Hypofrog went to see is on the list as T3 friendly, he's also the one with whom I had a telecon in which he told me that medicine is evidence based, which presumably means symptoms aren't relevant. I'm not sure how good that list is or if it is ever updated.

SlowDragon
SlowDragonAdministrator in reply to Espeegee

It is regularly updated - will make sure note is added

NHS endocrinologist is I guess bound by guidelines....if Ft3 is within range won’t prescribe

Another doctor who thinks you can dx thyroid issues by TSH 🙄. I’d follow Buddy’s advice and get your own blood tests done, including FT3.

Your fatigue is down to your low thyroid levels and your anxiety is because you’re getting no answers.

Good luck and take care 😊

HypoFrog
HypoFrog in reply to Scrumbler

Thank you ❤️

Anxiety and fatigue are treatable with caffeine and anti depressants, however if you have underlying T3 deficiency it’s better to treat that.

It astounds me the NHS is happy to dole out anti depressants rather than T3.

Definitely get your medichecks testing done and if it looks like you’ve got a T3 problem (we should be able to work it on this forum) you just need to see a T3-prescriber and get on it. I must caveat that you do need the testing first to confirm you need it.

HypoFrog
HypoFrog in reply to Dk123

Thank you. I know I don’t convert T4 to T3 but he wasn’t interested as results are in range. Time to go it alone or private.

How do you know you’re not converting? You can see a private endo from the Thyroid UK list, make sure you choose one who is known to prescribe T3 otherwise you are wasting time and money. Took me 9 (yes, nine!) Endos to get T3!

HypoFrog
HypoFrog in reply to Dk123

Previous results and help from the wonderful people on here.

The one I saw today was on the list of ones who had recommended T3 be prescribed.

9 private ones?? 😲

pennyannie
pennyannie in reply to HypoFrog

Do let Thyroid UK know this as there's little point keeping this endo on the list of people " meant to be " sympathetic " - it's even more upsetting thinking you have a life line only to find out the person at the other end of the line isn't who you thought :

Espeegee
Espeegee in reply to pennyannie

Totally agree, I still want to slap him! My results were in range too despite T4 being just over the BH bottom of range, they changed the NHs range locally by going from 12 to 11, how convenient 🙄 self treatment has made so much difference but I'm still working to solve the B12 issue. Another private blood test of course.

It's interesting that he automatically assumes that everyone in the 'thyroid forums' are simply disgruntled people who 'still have symptoms'. I have lately been forced to consider the conundrum of the dual nature of those working in the health profession. The very same people who are happy to hand out Anti Ds with no objective tests (cause they don't exist) because they just can't bear to see you sad, also dismiss vast swathes of suffering people as irrelevant.

I have 'fibromyalgia' as a convenient discripter for unresolved symptoms so I get where you are coming from with the "Chronic fatigue and depression". Similarly, when I mentioned the Fibro forums to my old GP she said 'Oh those are people who are depressed and like to wallow in their suffering. The ones who get on with it do well'

This same G.P had hugged me months earlier when I was going through a breakup. Absolutely diabolical. She also insists everything can be resolved with AD's and once told me I 'just want to suffer' for refusing them.

I too would do any testing privately before visiting a private endo but also check that they will accept the results. I know at least one I phoned absolutely refuses any results except those from their own affliated lab. Was 3 x more expensive and didn't even include reverse T3. A FMD I went to once insisted the same, got all annoyed for me asking if there was somewhere cheaper and said his was the most trustworthy. I did not know anything about private testing back then.

HypoFrog
HypoFrog in reply to Alanna012

Shocking!! It’s truly unbelievable.

Thank you so much for the advice.

Lotika
Lotika in reply to Alanna012

Crazy isn’t it? “Still have symptoms” = inadequately medicated, I’d have thought. But hey, what do the patients know? I do think some doctors can be a bit paternalistic and I object to that. I think we should be partners in our care, not objects of care.

ITYFIALMCTT
ITYFIALMCTT in reply to Lotika

This is my major concern about workarounds post-Brexit as it seems that UK prescriptions can no longer be filled anywhere but the UK which will block people being able to use a T3 prescription to obtain more affordable medication.Possibly a remote consultation with doctor in Europe could result in a prescription that could be filled in an EU pharmacy. But I wonder if any such doctors would stipulate they have preferred partnerships with particular testing labs in the UK which might add to the costs.

pennyannie
pennyannie in reply to Alanna012

I think we need to accept that medicine has become a business and pushing pills is a very lucrative business for Big Pharma, whose influence extends far beyond the obvious.

Yep 9 private ones, sadly only one thought I need T3 but he was completely convinced based on my blood tests. The rest were just lazy b#st&rds!

If the Endo you saw on NHS is available privately why not message his PA and see if he would be prepared to prescribe it to you if you became a private patient? Might put him in a tight spot but if he agrees then it saves you the hassle of explaining your history again.

Maybe don’t put it on an email, call his PA and discuss.

HypoFrog
HypoFrog in reply to Dk123

Eek! Glad you’ve finally found someone!

I think he said a few things which would put me off seeing him again. I will try elsewhere but make a start with vitamins on my own with private testing.

Thank you

Espeegee
Espeegee in reply to Dk123

Personally I wouldn't give him the money, why would you want to reward him for brushing you off and how would he reconcile it with his conscience (ha ha) to tell you in an NHS consultation that you're fine but agree to prescribe privately? That would make him a huge hypocrite IMO.

pennyannie
pennyannie in reply to Espeegee

In my opinion, in the current climate with CCGs calling the shots, the presumption of any NHS endo having a conscience is questionable - as I guess they need to follow the rules insisted upon by their hospital otherwise their career is in jeopardy -

It is also true that some will undoubted make extra money working privately and capitalise on the situation we find ourselves in.

It's just business I'm afraid, and it's despicable, since we have all grown up believing the NHS was the " gold standard " and " there for us " and the oath " First Do Harm " meant something.

Sadly I think " those days " are behind us as the NHS struggles under the weight of being all things to all people and sadly debased and frequently used as a political football.

SlowDragon
SlowDragonAdministrator

Was this endocrinologist on the Thyroid U.K. recommended list ?

If yes, please update Thyroid U.K. that it wasn’t successful appointment

HypoFrog
HypoFrog in reply to SlowDragon

Yes. Ok I will do. Thanks

Sadly, he was talking rubbish, as usual. I had my zoom appointment yesterday with a private endo who increased my T3 based on my FT3 result along with the TSH. He went through my full blood count with me step by step and showed me how the results must be read in conjunction with each other to rule out other conditions. He acknowledged my high cholesterol and triglycerides and simply said that they are high because my metabolism isn't working properly because my hormones are not optimal. It was an eye opener. All the GP does is say "it's all fine" if it's in range.

I had to go private and I pay for my T3 but he gives me the prescription for it. As soon as I told him I had done the gene test and proved positive for the Dio2 gene defect, he said "right, then you need T3" and although I'm still working on vitamins (yesterday he's written me a prescription for high strength, one-a-week vitamin D along with my spray because my levels just won't increase) and iron dose has been doubled, I can't get better without T3. We've experimented and the result of the experiment was that I need a mix of T4 and T3. Some need T4 only, others need T3 only, mostly we need a mix.

My advice would be to do all you can to increase your vitamins and minerals, but at the same time consider going private.

Your endo sounds like a dream! 😂

Thank you, that’s my plan now.

Lotika
Lotika in reply to HypoFrog

Good! I’m pleased you have a plan!

Thud, faint, have him cloned, quickly.

Who is this saint? 😂 no seriously please DM me their name!

Hey buddy do you mind private messaging me with who you are seeing please?

Please can you PM me the name of your endo also? Thanks!

And me, please!

I just wanted to say I’m sorry you had this awful experience. My T3 was “in range” (only just) and I got prescribed on the NHS, so for what it is worth, either my NHS endo is wrong or yours is...

you’ve obviously three choices: 1. Accept feeling rubbish and quit; 2. DIY, with help from here; 3. Go private. Or actually, maybe there is a 4th... Patient Liason - you could complain and try to get a second opinion within the NHS? I don’t know how possible that is, mind. Just... I recall various governments trying to say we had choices with NHS treatment, so I wonder how we access those?

HypoFrog
HypoFrog in reply to Lotika

Wow... you’re lucky to find a good endo. I’m jealous! 😂

Yep... I’m going to take some initial steps with vitamins myself and then consider private.

Thank you

Lotika
Lotika in reply to HypoFrog

It took 5 years and I’m still inadequately medicated (I think) but at least I’m on the path towards getting better finally, so it’s good.. !

HypoFrog
HypoFrog in reply to Lotika

So good! 😊

I'm sorry you've had such a rubbish appointment. Before going private, while you optimise your nutrients, can you as your GP to send you to someone else? And/ or a sep post here asking if anyone can recommend someone - private or NHS - near-ish to you who is supportive of T3 meds and a bit better than this one ...

Thank you. It’s just the time it takes and I’ve just been getting worse over the years. Need to get things going now sooner rather than later.

I didn’t think we were allowed to ask for names in the forum. Maybe I’m wrong. 😆

You can ask for people to send you a private message if there's someone they can recommend ... always worth saying why you want to see an endo - ie to get NHS lio or for another reason :)

But yep it's SOOO frustrating and slow x

Espeegee
Espeegee in reply to Lotika

I've seen 4 NHS Endos, all sang from the same hymn sheet, it's just appalling. So many are diabetic specialists who know little to nothing about the thyroid.

Paying to see a private endo is a decision I think you should put off as long as possible - at least until you have optimised basic vitamins and nutrients, gone gluten-free, optimised your thyroid hormones, improved your gut health as much as possible, and got as much out of this forum as possible.

Free advice from people who understand your problems, believe what you say, who have often been through exactly what you are going through, and who have improved their health themselves, is much better value than advice you'll get from most endos. But, of course, we can't prescribe anything. I'm not remotely suggesting that everyone can become 100% healthy, but even a 10% improvement is worth the effort if you feel terrible.

If you do pay to see an endo, or any other doctor privately, I would recommend that you check before making an appointment and paying, that the person you see will write to you personally with their recommendations. I paid to see a gastroenterologist privately a few years ago and he didn't write to me he wrote to my GP - and in his letter he gave his opinion of me, and it wasn't nice. It was my GP who gave me a copy of his letter.

...

Regarding depression and anxiety, I suffered from both of these very severely, but have now found ways and means to fix them. I'm still a bit depressed but take a supplement that works well for me that I buy without prescription. My anxiety has completely disappeared. I mostly credit optimising my iron as best I can with getting rid of my anxiety - but I accept it could just be that iron was the thing I've been too low in all my life, and was the worst of my deficiencies. I now buy my own prescription-strength iron supplements (without prescription), pay for my own testing, and now that my iron is as close to optimal as I can possibly get it I have worked out a maintenance dose that keeps my levels there.

...

One thing I had to learn in order to get well is how to determine what I am legally forced to get a prescription for if I need it, and what I can buy without a prescription. I've also learned how many non-prescription substitutes there are for things I had assumed I needed a prescription for. My big realisation came when I found out I didn't need a prescription to buy prescription-strength iron supplements. Once I learned that I was able to fix my own iron without needing a prescription it felt like I had been liberated! I've since gone on to learn how I can improve some other things too.

HypoFrog
HypoFrog in reply to humanbean

Thank you for the advice. I will certainly be making a start myself with the help of the wonderful people on here. 😊

Espeegee
Espeegee in reply to humanbean

Such a lovely encouraging post, thank you ❤️

I can imagine how gutted you are feeling. You’ve had loads of good advice - I’d be really wary of anyone who decides to treat your ‘anxiety’! I always think treating anxiety is a bit of a cop out.

I don’t know what your antibodies are - you can find out if you buy yourself a Medichecks home finger prick test - like the others say doctors may not accept them but they are reliable and it will let you see a full picture of what’s what.

If you have got antibodies you can either ignore them and let them sit at whatever they are at or if you want to try and reduce them you could try going totally gluten free which is what I did. I went totally gluten free when I was found to have another autoimmune condition after being diagnosed with Graves Disease, I was only going to try it for a while t see what happened but over a period of time it brought my antibodies right down. It could have been that that would have happened anyway but I’m not prepared to go back to eating gluten to find out.

I hope you can find an answer, there’s nothing worse than pinning your hopes on an endocrinologist’s appointment, particularly one who you think is thyroid patient friendly and then being disappointed - well there is, it’s one who then thinks your ‘anxiety’ should be treated! That spatttitude probably ramped up your ‘anxiety’ no end. Good luck with it all😊

Thank you, I’ve calmed down a bit now. Haha! It is very disappointing though.

It's not because your TPO antibodies were sky high that you've still got antibodies, it's because you still have some thyroid so the antibodies still have something to attack. What thyroid disease or condition we're you diagnosed with and why did you have RAI?

HypoFrog
HypoFrog in reply to Nanaedake

I had an overactive thyroid and medical history said ‘probably graves.’ I had RAI in 2011.

I wasn’t aware before today that I had TPO antibodies pre RAI so I was wondering how I had them now.

Nanaedake
Nanaedake in reply to HypoFrog

Some people with Graves disease have TPO antibodies which primarily diagnoses Hashimotos thyroiditis, I believe. For Graves disease you would need a result for TSI and/or TRab. Do you have these results? I understand that Graves antibodies will remain even if you lose your thyroid.

If it were me I would want to know if I had antibodies for Graves disease as they can remain active, for example, in the case of Thyroid Eye Disease.

Often in the first stages of Hashimotos there is a release of Thyroid hormone causing overactivity but this settles down to hypothyroidism as the Thyroid is slowly destroyed by the disease. This initial overactivity is sometimes misdiagnosed as Graves disease.

HypoFrog
HypoFrog in reply to Nanaedake

I don’t think I was ever tested for graves before or after RAI. My medical history notes say ‘probably graves’ 🙄

Hi. I have Graves and from what I have learnt on this site Graves people can have TPO antibodies. I have them too along with TSI and TRAB. I was diagnosed with chronic fatigue in 2014. My TSH was 4.0 range 0.05 to 4.0. I was prescribed anti depressants and saw an Endo who said I had chronic fatigue. No treatment for chronic fatigue. Started on the anti depressants as I was suicidal although never told anyone that. Antidepressants didn’t work so stopped them. Caffeine when you have chronic fatigue will tax your adrenals even more. 6 years later I have Graves. I actually buy Adrenal Support supplement and 5HTP which is good for low mood and milk thistle for the liver. I’m really sorry that it’s been a shit show, sorry hope that was ok to say. I would ask for a second referral and do your plan and then a private Endo last. My private appt for the chronic fatigue diagnosis was £150. One hour. No plan or treatment. Bloody joke. When my TSH was 4.0 I was declined to be seen at hospital. I’m lucky I didn’t kill myself. Never forget you are not alone and there are good people here to support you. 🥰

pennyannie
pennyannie in reply to NIKEGIRL

So, in 2014, with just a a TSH blood test result showing you at 4 and top of the range - no diagnosis of hypothyroidism - and no wait and see - but given the label of chronic fatigue :

I just wonder what a full thyroid panel would have shown : no doubt low T3 :

Without a diagnosis we struggle on and adjust to a new " norm " and think we can beat it, but given time and circumstances it comes back and bites in a different form.

I believe I was undiagnosed hypothyroid for most of my life :

I recognise the symptoms as this is how I became, again, after becoming hypothyroid through RAI thyroid ablation for Graves in 2005.

In the years before my diagnosis of Graves I went through much emotional upset and then within a matter of 6/8 years lost both my parents and my only brother.

Four months prior my diagnosis of Graves I was assaulted at work, verbally and physically threatened by a man I employed as my assistant manager.

I think I must have " flipped " in my medical terminology - though my symptoms initially were solely exhaustion, insomnia and dry gritty eyes.

I proceeded to go through the company grievance procedure but as he had made sure there were no witnesses it became a messy situation and I tendered my resignation, which ultimately left me collapsed on the floor, working out a 3 month period, and the unit permanently closed,

I did experience more " hyper " symptoms whilst on the AT medication and felt elated to be eating for England and loosing weight as that was a " first " !!!!

The body is amazing and can accommodate and adjust so much but ultimately I think when push comes to shove, " something's gotta give " :

We are only human, and burying emotional hurt and disappointment, soldiering on and being the strong one - doesn't bode well long term.

P.S. There s a very interesting article on the Canadian Thyroid Patients forum entitled :- The Spectrum of Thyroid Autoimmunity :

I tried the cut and paste route but still need real things like scissors and glue !!!!!

HypoFrog
HypoFrog in reply to NIKEGIRL

Thank you! Sorry to hear what you’ve been through. It’s all so frustrating!

It is hard. And I was shocked at my diagnosis of Graves. It’s taken me 6 months to really accept it. My first Endo was harsh and brash. Polite enough but cold with my no compassion. I never saw her again. My second and current Endo is lovely. Kind and empathetic. I’ve only seen him once so I hope he has knowledge. It’s easy to give up but it takes more strength to push on. Although some days it feels like pushing s@@t up a hill.

I struggle to understand how you didn’t get the correct testing. I do t think any one Endo is the complete package.

There is support here and good people with sound knowledge.

HypoFrog
HypoFrog in reply to NIKEGIRL

It does take strength to push on. I think it’s I put my trust in the NHS and get let down and it feels wrong that I should have to go it alone like so many others. But yes, we all have amazing support in here. ❤️

NIKEGIRL
NIKEGIRL in reply to HypoFrog

This can be such an isolating disease. Friends who mean well but don’t get it. I think when you put trust in doctors and you expect them to be there for you and they are not you realise they are not perfect and at times not able to help. It breaks your image of what you expect a doctor to be

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