Disappointed: So after 4.5 years of suffering... - Thyroid UK

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Disappointed

LexxiiB
LexxiiB

So after 4.5 years of suffering, and most recently due to a feeling of choking / lump in throat I got my appointment for an endocrinologist this morning.

What an utter waste if time.

They dicsused my case, werent insterested in the Hashi's flair ups (its like they don't exist), they were only interested in the lump / choking sensation.

They wouldn't discuss the under-medicate / over-medicated pendulum of life that I live on.

They have refered me to ENT regarding the the throat, but have suggested that its possibly to do with silent reflux which he was keen to point out is NOTHING to do with Hypothyroidism.

In summary at the end, he said that we "the thyroid community" need to accept that once we have Levothyroxine which medicates us to "in range", (mine is currently TSH 14, range of 9-19) that we need to stop considering our selves a victim of this. Essentially, the fact that I still have 8-10 symtoms of Underactive thryoid, is nothing to do with my thyroid, and must be something else wrong with me. Essentially Im overweight because I eat too much, Im tried because I don't sleep long enough or go to bed early enough, I'm anxious because there is too much going on in my life. So he sent my off out of the door with a script for Omeprazole and gaviscon to treat the symptoms for silent reflux. (I have quite an experience of silent-reflux as I had a baby who suffered form it until he was 4).

Ive never felt so lonely and disappointed in my life.

I must accept that todays status is what I should consider normal, because I will never feel well again. As long as on paper you re not out of range, then theres nothing clinically wrong with you.

I feel totaly broken. Maybe its all in my head?

25 Replies
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SeasideSusie
SeasideSusieAdministrator

So sorry LexxiiB, but I'm not surprised. There are many, many members here whose appointment with an endo has been a total waste of time - including mine who made me so much more unwell that I was when I went to see him (and I was bad enough then). TSH is King, they consider nothing else. Like so many on here, I've learned how to sort myself out.

Thankyou for your reply. It seems a move to NDT might be my next step - just how to get it and work out the dosage? I guess that a private endo might be the next option - just don't want to get refererred to this endo privately rather than on the NHS - his bedside manner was not the best! :)

SeasideSusie
SeasideSusieAdministrator
in reply to LexxiiB

Lexxii

Even seeing one privately may not help. If they also work within the NHS - which many do - then they are likely to toe the NHS line so you may not be any better off and you will have paid for the privilege. There is the odd gem so you could send for the list of thyroid friendly endos from Dionne at ThyroidUK then ask on the forum for feedback on any that you can travel to.

tukadmin@thyroiduk.org

And there may be the odd one who would consider a private prescription for NDT or T3, or may suggest you source them yourself.

There is a lot of information from experienced patients here on the forum which would be cheaper and may possibly be more helpful.

shaws
shawsAdministrator

That's why we are forced to take our own 'action' because we wont be brow-beaten by those who feel they are so superior and more knowledgeable than those seeking help/advice.

He is so wrong. We do get well, despite endos like the one you consulted.

He is unaware of all the clinical symptoms and believes levo - if it is prescribed - is perfect replacement. It isn't for many people and they are on this forum. They do recover their health and vitality with the help and support of members. Why waste our time/money/health on those who are 'superior' in thought but not in action or knowledge.

I could read a book about making wedding cakes and throw in all the ingredients but that doesn't mean a three tier cake will be sumptious and delicious if it isn't done, carefully but, most importantly, with all the right ingredients which for hypo is T3/ T4 or NDT.

LexxiiB
LexxiiB
in reply to shaws

Im totally emotional reading your (and Seaside Susie's) responses. You are right.

OK, so once I get my head around my awful experience, I will get back on track with self-help. I was doing ok, managing my supplementing, and diet etc via private bloods, but then stupidly seemed to think that this appointment would help and provide answers. Wow.....lesson learnt there! Maybe thats my problem - its not disappointment, I probably feel silly that I thought I could trust him.

Tomorrow is a whole new day!

Thankyou - just having you all here on this forum makes everything feel so much better. I hope that you all know how much it helps and how grateful I am! :)

shaws
shawsAdministrator
in reply to LexxiiB

I think most of us feel such disappointment when those we have waited to consult with, hoping fervently that they will do their utmost to help us but they don't even pass on a little bit of concern. They are so superior and I think they're in the wrong profession. It sounds good on paper 'Endocrinologst' then we find out they don't even know what that word actually means.

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helvella
helvellaAdministrator
in reply to Hidden

And if the poster does not have Synthroid available?

We have seen people who do better on Unithroid (even when supplied as the notionally generic Lannett - it is exactly the same product). Or Sandoz. Not everyone prefers Synthroid.

I wholeheartedly agree with consistency - changing only by choice.

The brand name versus generic issue isn't the same in all countries. In the UK, for example, we have four formulations of levothyroxine available. But in seven different liveries (packaging). It would be unusual for people to receive levothyroxine other than in very identifiable blister packs within card outers. Each of the four formulations has people who prefer that one over the others.

Do you realise that in some countries Synthroid is regarded as the outsider? And that, outwith the USA, it is made in Canada by Mylan - a major generic manufacturer?

HiddenThis reply has been deleted
helvella
helvellaAdministrator
in reply to Hidden

I purposely chose Unithroid (Lannett) and Sandoz as examples precisely because they are available in the USA. And some people have got on better with them.

And some prefer Tirosint. (Also available in the USA.)

HiddenThis reply has been deleted
helvella
helvellaAdministrator
in reply to Hidden

Most of the information is here:

dailymed.nlm.nih.gov/dailym...

HiddenThis reply has been deleted
helvella
helvellaAdministrator
in reply to Hidden

SYNTHROID is just a name for a make of levothyroxine.

I don't understand why you appear to believe that Synthroid is anything other than just levothyroxine.

From the company's own website:

What is Synthroid?

Synthroid is a prescription medication that can help treat hypothyroidism. The active ingredient in Synthroid is called levothyroxine sodium. Synthroid can help restore thyroid hormone balance. It is a man-made thyroid hormone identical to thyroxine, the hormone that’s naturally made by the thyroid gland.

synthroid.com/what-is-synth...

Armour and Cytomel are NOT levothyroxine.

Your "warnings" could persuade people to make inappropriate choices.

helvella
helvellaAdministrator
in reply to Hidden

Synthroid is not licensed in the UK.

Where there are licensed medicines, it is almost always expected that they should be prescribed rather than an unlicensed product.

Therefore Synthroid is not available in the UK. (Technically, it can be specially imported.)

Thankfully, all UK levothyroxine is free of colouring agents - many of which are suspected of causing their own set of unwanted effects.

Clearly you have not tried them all as you didn't seem to know of the highly rated Sandoz product.

have suggested that its possibly to do with silent reflux which he was keen to point out is NOTHING to do with Hypothyroidism.

Of course reflux is related to hypothyroidism. One of the effects of hypothyroidism is to reduce the amount of stomach acid produced. And although it may seem odd, if you know how the valves at the top and bottom of the stomach react to acidity level in the stomach it makes total sense that insufficient acid production leads to acid reflux.

The way to fix reflux is usually (there are exceptions) to increase the amount of acid in the stomach, not suppress it with antacids, and PPIs like Omperazole.

If you do a search on this forum for references to betaine or betaine hydrochloride and/or apple cider vinegar you'll find out how it helps people. (Google them as well.)

Some useful websites and people worth reading on the subject of stomach acid and reflux are scdlifestyle and Chris Kresser.

You might find some of the info in this post of interest :

healthunlocked.com/thyroidu...

Aww your definitely not alone! Most of us have been there, feel better, get poorly again...it’s a constant rollercoaster. But it does get better 😊

Even with optimal bloods and correct thyroid meds I still have active hashimotos and my Endo says it can’t be treated. I’ve gone gluten free and seen a huge improvement in my overall health.

I’m still researching, tweaking my supplements and eliminating any foods from my diet that trigger the swelling in my throat as I know that’s when I’m getting pretty sick / having a flair. It has and probably always will be besides chronic fatigue my worst symptom.

Believe me it’s not reflux it’s hashimotos causing inflammation and your thyroid to swell so you struggle swallowing as it’s being attacked by your immune system. It’s a scary horrible feeling.

This forum can help you. Research what you can also. I found Izabella Wentz a huge help. Diet is key and you’ll find the choking sensation improves when you go gluten free as it reduces your antibodies and therefore your flairs in most cases. Bigs hugs it’s not easy ❤️

LexxiiB
LexxiiB
in reply to MissFG

Thankyou for such honesty, as much as I don’t wish this on anyone, I’m so grateful to not feel on my own like I did this morning....😘

Your comments help so much!!! X

MissFG
MissFG
in reply to LexxiiB

Anytime your always welcome to message me if you’re feeling alone and low. Or post on here there’s always someone who would want to give you a kind word that might just help you get thru a bad patch.

Stay positive you can do this x

I can relate.. there must be a Doctor out there somewhere that can actually recognize a problem .. make a proper diagnosis thus finding the solution ... I have heard so many textbook clichés from doctors lately .. that do not have a clue what is wrong nor what to do about it! If anyone here has found a skilled educated doctor .. please share his contact info with the rest of us🙏

My flares have been going on since I started Levothyroxine in 2007. I have been to hospital on a number of occasions as flares lasted several hours and I didn’t know what was happening to me. This year my cortisol has sunk to a dangerous level on a number of occasions. I believe my issue is Levothyroxine causing this. I have tried NDT recently privately but the T4 element has not worked for me. I am so ill now that I cannot sit up or walk as cortisol is truly compromised. I stopped taking Levothyroxine for a few days as I was convinced it was causing my symptoms. Miraculously within 3 days I had all my strength back and could walk properly again. On day 7 as I’m not silly I started Levothyroxine again and within 2 hours I was back to having to lay flat as no strength. I’m waiting now to hear about changing to T3 but this has lots of surrounding issues. It may not work when I do get it. But it’s my last option now.

Just wanted to say that Levothyroxine is not right for everyone. Xx

Your post has made me so cross and upset for you! Trust your feelings, and knowledge and experience, and move doctors and then start again. Please don’t put up with that patronising rubbish. Incidentally omeprazole caused me a ton of issues - low folate etc and was prob given me when I had low acid not high. Good luck!

I know exactly how you feel having been through much the same. We want to get better. We go to see someone who is supposed to help us get better. We look forward to this. Then Crash! They dont help us. I sat in the car and cried for nearly an hour, then I started swearing. Both made me feel better!

On the tummy acid thingy - how to test - take a teaspoon of baking powder mixed in water and drink. If you dont belch like a burst balloon within a minute or so, or as in my case, not belch at all, then you have low stomach acid. I find cider vinegar (mix 50:50 with warm water) sorts it out. I was getting "heart burn" around 30 times a day, but a spoonful of vinegar a day has proved effective. A spoon full of vinegar helps the tummy go down - (sing along, not you at the back!).

Anyway, hope you feel OK now and sending you a hug.

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