My Thyroid Story Part III: My Thyroid Story Part... - Thyroid UK

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My Thyroid Story Part III

greygoose profile image
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My Thyroid Story Part III

Dr UVW, endocrinologist

2013 was probably the worst year of my life – although the jury is still out on that one. It was like my own personal and private 2020. Almost every month, there was a new upsetting event to cope with. In January, I watered my Christmas hyacinth and a cloud of small black flies rose up and invaded my kitchen, which bred rapidly and seemed impossible to kill. They got everywhere, into the cupboards and into my food. The only thing I found to combat them was to sneak up behind them with the vacuum cleaner and hoover them up. In March, a close friend rang me to tell me he had cancer. In June, a rogue plumber virtually destroyed my beautiful kitchen. And in July, I was struck down by a mystery illness that nearly killed me.

I’m convinced it had nothing to do with thyroid, so I won’t go into the details here. But, for those that are interested, you find out more about it here:

healthunlocked.com/thyroidu...

I stuck it out at home until August, firmly believing that my body would win in the end and destroy all the infections that were plaguing me. But, I have to tell it as it was, and say that I was totally and utterly, off my head! Out of my tiny mind and had no real idea of what was going on. It wasn’t just brain-fog, I think I went temporarily insane.

But, in August, I had to admit defeat when I found I was too weak to slice a banana. I just didn’t have the strength.

In hospital, drifting in and out of sanity and sleep, watching the room as it changed size and shape, I had a visit from Dr UVW, who had come to inform me that I had a brain tumour. Given that nobody had examined my head, I asked her how she knew that. “Because your TSH and FT4 are both zero,” she said. I asked her if she’d tested the FT3. “And why would I do that,” she asked. “Because I’m hypo/Hashi’s and taking T3 only,” I said. “Ah,” she said. Not in the least embarrassed by her lack of clinical know-how. “Well, why not. I’m broad-minded,” she said, and asked to see the package. She turned out to be less broad-minded when I told her I bought it on-line. After a lot of tossing the subject around, and her asking questions about what else I might be poisoning my body with that I had bought on-line - “Are you taking iodine or DHEA?” she asked. “No,” I said, “but I’ve taken both in the past…” “Ah ha!” she said. “both prescribed by doctors!” I continued. She burst into hysterical laughter. “Oh, really!” she said. “Well, OK, continue with the T3. But, you should only be taking 62.5 mcg daily.” I shall never know how she arrived at that magical number without testing my FT3, or even asking me how much was actually taking. “I’ll see you next Wednesday,” she said. But, I never saw her again.

Dr XYZ, GP

On leaving hospital, in September, a bundle of bones wrapped up in baggy skin, profoundly deaf from the drugs they’d given me, suffering from mal-nutrition from an ill-adapted hospital diet, with a perforated septum (no idea how that happened) I had to find myself a new GP to prescribe my new medication for my presumed heart arrhythmia that the hospital cardiologists had ‘diagnosed’ me with – although, to my knowledge, that was pure fantasy (like my hospital notes!) because all the tests and cardiograms came back just fine – but, remember, I was still out of my head, and not thinking straight. GPs are like gold dust where I live. They come and they go, but mainly they go, and the only one that was taking on new patients was the man nobody liked: Dr XYZ. Rude, self-opinionated and eye-wateringly ignorant, this man opened his surgery door to me on my first appointment saying “Hello, I’m the doctor.” Well, I didn’t think he was the window cleaner! And, given that there were at least four other doctors in that building, who could have said the same, I found that rather strange. Or, was it some bizarre sort of joke referring to The Doctor, as in Dr Who? We shall never know.

However, apart from his tendency to whisper, even though I’d told him I couldn’t hear, we rubbed along quite well. We even seemed to like each other! Which was really weird. I did have the feeling he was doing his best for me. Which was a feeling I’d never had before. But, December found me back in hospital again. This time with suspected kidney failure. False alarm! It was just the drugs they’d given me that ‘often have that effect’. Well, if they know that, why… Oh, never mind. But, while I was there, they tested my TSH/FT4 again and found a TSH of around 30. Which didn’t surprise me in the least, because, my brain, still being on another planet, had decided that I didn’t really have hypothyroidism. My 2000 diagnosis was a mistake, and it had been the stress and shock of that awful operation that had caused my TSH to be elevated – just like it was now. Easy to understand how these things happen. But, in March 2014, the bag of bones that I was started to put on weight. I asked Dr XYZ to do a thyroid panel:

TSH

FT4

FT3 (not necessary, he said. Why? Because I don’t know how to interpret it.)

Vit D (oh, you’re going to be low in that! you don’t get any sun. no point in testing it. And, apparently, no point in prescribing it, either!)

Vit B12

Folate (we only do that when the patient has anaemia. And, he launched into a long, whispered explanation, which I couldn’t hear, with diagrams that I couldn’t see… I gave up)

Ferritin

Iron (oh, no point! Why? It’s the same thing as ferritin!)

So, I got what I could and the TSH was now 45, and I asked for T3. There followed a long and tedious conversation that I’ve detailed here:

gggreygoose.wordpress.com/2...

If anyone is interested.

I stuck it out for a few more months with Dr XYZ, but if I thought it was bad with the heart condition, his attitude towards thyroid finally lead to…

Showdown time: And, what was the cause of the last straw? Adrenals. Of course. As detailed in the link above. And, I thought, no. I can’t take this anymore. I was so confused when I left that appointment that instead of leaving by the main door, I walked into a broom cupboard. And, that was the last time I saw a doctor.

Self-treating Again

So, here I am, left to my own devises yet again. I have to say I’m still on the same dose as I was when I left Dr XYZ, and it seems to be my dose. As it’s difficult to do private labs in France, from time to time I experiment by raising or lowering the dose slightly, just to see what happens, but I always come back to 75 mcg. That just seems to be right. And, from time to time, I try adding in a little T4, just to be sure. But it’s always a huge relief to stop it again. T4 just doesn’t suit me. So, I’m pretty confident in what I’m doing. I know how my body reacts to various supplements, and when it needs a break, so I supplement things like iron and magnesium, etc. intermittently. And that seems to work. I wouldn’t say I was back to the way I was before all this started, but I think this is as good as it gets. And, in any case, I no-longer know what normal is. So, I’m not complaining.

Thank you for reading my story. And, if it gives just a smidgeon of hope to those in a dark place, then it was worth the effort of writing it.

Be well. Or as well as you can, anyway.

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greygoose
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57 Replies
Wagamama profile image
Wagamama

Thank you for sharing and also for all the very helpful advice you've given to people on here over the years who have hugely benefited from your knowledge and time! You have been so helpful to so many!

greygoose profile image
greygoose in reply toWagamama

You're welcome. :) Glad to be of service.

jamjar67 profile image
jamjar67

Wow!!! Well done for surviving and staying sane!!!! It’s a lonely and scary place being a Hashis patient who doesn’t get well on T4! This story illustrates how scary it can be! You have great resilience and character coupled with a wicked sense of humour 😆 I’m only 2 yrs into my journey and already angry, resentful and frustrated!, so I’m taking away the importance of these traits in keeping going...!

Thank heavens for this group and the time and patience extended to us less informed members from the more experienced in effort to help and guide us.... I wonder if the day will ever come when Drs and specialists will have sufficient knowledge that we feel

safe in their hands 🤔🤞🤷‍♀️🙏

Thanks - you’ve made me laugh albeit telling an unlaughable story!! 🥰

greygoose profile image
greygoose in reply tojamjar67

You're welcome. :)

And, in answer to your question, I don't think that day will come until Big Pharma loses the power they have over all things medical. It's not in their interests for doctor to be well-informed, nor for hypos to get well. They would lose a heck of a lot of money!

jamjar67 profile image
jamjar67 in reply togreygoose

It’s horrendous and the worry is that they try to dry up the ability to buy online or abroad - I’m currently on an NHS trial but I’m dreading my appt in the N Year as although I’m improved I’m not better, the Endo already told me they’d be monitoring my TSH from now - I’m wondering if I should leave 24hrs between my T3 and T4 before being tested? Would that do anything? 🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply tojamjar67

TSH is almost always suppressed when taking T3 ...it’s irrelevant.

And TSH won’t react to any temporary reduction.

greygoose profile image
greygoose in reply tojamjar67

That would lower your FT3, but not your TSH. The TSH doesn't move that fast.

shaws profile image
shawsAdministrator in reply togreygoose

You've just described a nightmare that few could resolve but, of necessity, you have struggled through regardless.

From 1892 NDTs were first introduced and which saved thousands of lives without blood tests with the skill of the doctors (now lost forever it seems).

I think we, the members on this forum, should select you to be on a Committee of Endocrinologists as they seem to be so badly trained and unknowledgeable. You could certainly sort out their 'thinking' that comes through them not having a dysfunctional thyroid gland' and following Big Pharma's guidelines.

We would all then have a chance of recovery more quickly and relief of clinical symptoms.

The professionals should certainly change their attitudes and if they took more notice of of clinical symptoms there would be less suffering.

Two of our favourite doctors - Dr Peatfield and Dr Skinner - were trained upon clinical symptoms and relieving symptoms. They were then pursued as criminals because they did as they were taught plus their patients recovered.

Other doctors, I believe, lost their licence if they didn't following the new 'rules'.

How did it come about that Levothyroxine was first made in 1927. It is on the World Health Organization's List of Essential Medicines.

Dr Lowe stated that doctors were paid by Big Pharma to prescribe levothyroxine.

Levothyroxine is available as a generic medication. Levothyroxine was the third-most commonly prescribed medication in the United States in 2017, with more than 101 million prescriptions.

No mention of NDTs as options and now banned in the UK.

The aim for relieving symptoms is to bring hypothyroid patients to good health once more. They should certainly restore options of thyroid hormone replacements (NDTs and T3) that have been removed and which were proven for many years to restore health. I wonder how much the NHS spends on blood tests - not including private tests.

We are also aware that many do recover their health on levothyroxine but they will not be on this forum. Also many people do not have internet connection to search for information.

madge1979 profile image
madge1979 in reply toshaws

HEAR HEAR Shaws 👏👏👏👏👏 you too are an invaluable member here .. thank you XX mx🌹

greygoose profile image
greygoose in reply toshaws

Yup. That's all very true. Profits before patients. :(

Shield-Maiden profile image
Shield-Maiden in reply togreygoose

Sad, but unfortunately, true xx

pennyannie profile image
pennyannie

Well. I'm as well as I believe I can be thanks in the most part to this amazing forum :

Around 3/4 years ago I started reading up, and it was " that GreyGoose " who picked up my second post and responded as only a goose can, thankfully confirming that my doctor wasn't good at maths and that I was not going mad !!!

I hung on to those words and continued my slow trek back to better health and am now around 2 years into self medicating with NDT and so much better and currently, with no need to visit any mainstream medical establishment for anything.

It simply beggars belief that people are kicked to the curb for the sake of Big Pharma's bottom line, but that's a whole other can of worms.

Can I just ask who were your other students and what knowledge were you attempting to impart, 'cause you " do it " so well ?

Murphysmum profile image
Murphysmum

I have loved reading this greygoose . The suffering you have endured is quite frankly incredible. From the age of 9? It took me about a year of suffering to find this site, and although I’m still learning, still peaking and troughing, I am essentially well two years after that. Well done to you for continuing to fight for what seems like longer than I have been on this earth!

I, like you, have discovered I cannot tolerate T4 - something which I am very fortunate to have very quickly found a private endo who understands, but I have regular conversations with my gp practice who provide the scripts and they are always very cynical chats.

I’ve recently had a discovery of my own with regard to female hormones and the efficacy of the T3 I take and this too no doubt will be received with vary levels of disbelief but it’s certainly the case for me.

So like you, I continue to self treat with regards to everything except the T3 which is under the guidance of my private endo, but who was very happy to write to my gp after our last meeting and advise them that I “knew what I was doing” and should be monitored to do so! 😜👊🏻

Thank god for the internet otherwise where would we be?

Thank you for all the help you’ve given me over the last couple of years and I hope you continue to live a healthy life under your own direction! 😊

greygoose profile image
greygoose in reply toMurphysmum

Thank you for your good wishes. :)

Localhero profile image
Localhero

Again, thank you so much for sharing your story. I'm sorry you've had to endure this. On the other hand, you do help me feel less alone in dealing with the insanity of the medical system! Here's to your continued health 🙂

greygoose profile image
greygoose in reply toLocalhero

Thank you. :) That is why I wrote it.

Naomi8 profile image
Naomi8

How do I navigate to "My Thyroid Story"parts 1 & 2?Thanks!

greygoose profile image
greygoose in reply toNaomi8

Here are the links:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

But, you could have done it by going onto my profile - i.e. just clicking on my user name. :)

Naomi8 profile image
Naomi8 in reply togreygoose

Ahhh!-many thanks!

greygoose profile image
greygoose in reply toNaomi8

You're welcome. :)

Lora7again profile image
Lora7again

If I was greygoose I would add a link to her previous threads so members can follow them.

Here is the links.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Aunds profile image
Aunds

Thank you for sharing this greygoose, I was told about this forum by a nurse 7 years ago and you in particular have been more help than all those doctors put together.

greygoose profile image
greygoose in reply toAunds

You're welcome. :)

Tiredofitall profile image
Tiredofitall

Thankyou for sharing.

greygoose profile image
greygoose in reply toTiredofitall

You're welcome. :)

greygoose what a nightmare. What a battle. It’s terrible that you had to go through all that! Thank you for all the help and advice you give us on this forum. I wish you could have found advice like this at the time you were going through hell x

greygoose profile image
greygoose in reply to

You're welcome. :)

NIKEGIRL profile image
NIKEGIRL

I have loved reading your story. I appreciate it’s not a story you would have ever wanted to tell. It is enlightening. It shows the adversity and struggles but also the courage and fortitude to go on. Your story will give others the strength and courage to continue in the face of adversity. Thank you GreyGoose. Kindest regards always NIKEGIRL

greygoose profile image
greygoose in reply toNIKEGIRL

You're very welcome. :)

elle profile image
elle

Thanks Greygoose for sharing your sad and maddening story, I really do not understand why Dr’s in this country are so blind to how to treat thyroid disease, it really makes no sense. It’s like doctors have had a frontal lobotomy and you would think that they would know better with the number of people they see with this problem. In fact it seems to be a global problem with medical bodies being quite aggressive to T3 usage. Even with seeing so called experts ie Endo’s who specialise in diabetes NOT thyroid. Why does the medical world ignore all the past knowledge that has been built up, why have they changed the way they test as well as changing the parameters, is it because anyone who is diagnosed then doesn’t have to pay for medication? I would happily pay if I could get to see a doctor (any doctor) who has been trained to deal with all aspects of the Thyroid instead of being talked to like a 5 year old who couldn’t possibly know anything about their own body, it makes me so mad but why is this situation happening is there something we are all not aware of. I am hypo and have been for 25 yrs, I self medicate (intelligently) and I’m fed up with doctors making me feel like a criminal and or an idiot, right back at you! It still doesn’t make any sense though 😏

greygoose profile image
greygoose in reply toelle

It's all about what they learn in med school. What they learn in med school is sacred to them, and they are taught that thyroid issues are no big deal. You just give the patient levo until the TSH comes back somewhere in range, and your job is done! If the patient is still complaining, then it must be a mental issue and they should see a psychiatrist.

As to why that's what is taught in med schools, well, that is all down to Big Pharma, who control the purse strings. If doctors know more about thyroid, and the patient actually got better, BP would lose a heck of a lot of money that they make on things like statins and antidepressants. So, they're very unlikely to allow that to happen!

Lexa22 profile image
Lexa22

Thank you for sharing. You definitely give people hope.

greygoose profile image
greygoose in reply toLexa22

You're welcome. :)

O11y profile image
O11y

Thank you for posting your story some of it made me laugh not that you’re journey has been funny in any way you’ve had a hard trot Keep well we can’t do without the help you give us

greygoose profile image
greygoose in reply toO11y

Thank you, you're very kind. :)

Francisneat profile image
Francisneat

What a story greygoose, hats off to you for making a very serious time still told with wit, the broom cupboard bit made me laugh, only because I have also done similar things. keep going x we are all with you and your inspiring post.

greygoose profile image
greygoose in reply toFrancisneat

Thank you. :)

cazmania7 profile image
cazmania7

Thanks for sharing GG! ❤️😀

greygoose profile image
greygoose in reply tocazmania7

You're welcome. :)

tattybogle profile image
tattybogle

I've enjoyed daily story time very much , thankyou, for writing it.I am undecided whether your Grand Cupboard Exit is an anticlimax ......... or a stroke of Literary Genius....I think probably the latter, since i can't think of a better way to close your "Misadventures with Doctor Who"

It would all be so much kinder if they just said "thyroid ?... i haven't got clue... go figure it out for yourself, and i'll write you a prescription"

greygoose profile image
greygoose in reply totattybogle

Maybe I thought it was the TARDIS! lol

tattybogle profile image
tattybogle in reply togreygoose

lol .x

PRJ20 profile image
PRJ20 in reply togreygoose

and lol, Lol, LOL for you because...it's 3 years late and I feel as if you're my kindred spirit!! 😂🤣🤣

P.S. I'm not 'hitting' on you GG, honestly, as I'm proudly Asexual!! 🙃

greygoose profile image
greygoose in reply toPRJ20

Dare I say, that's probably a hypo symptom? :D lol

I have a feeling we probably are kindred spirits. Happy to have made you laugh.

PRJ20 profile image
PRJ20 in reply togreygoose

🤣🤣🤣

Nanaedake profile image
Nanaedake

That's a terrible journey but I'm glad you survived and got to where you are and can now help other people.

greygoose profile image
greygoose in reply toNanaedake

Thank you. :)

penny profile image
penny

It’s the loss of mental function which did for me; your description of this horrible effect of hypothyroidism struck a chord - a discordant one.

Season’s Greetings.

Thyroid17 profile image
Thyroid17

I do hope you've considered writing a book.

madge1979 profile image
madge1979

Dear Greygoose 🐦.. you’re amazing Thyroid Journey was very sad .. and most frustrating and I could almost feel your misery at times .. but Thank God , you’re here today to tell the Tale .

I shouldn’t have laughed but Did ! 😂

Your humour and wit enthral us ..

your experiences strengthen us and make us braver than we are ...and your success ensures us .. that WE Can do it too !

... and you could keep ALL. of that knowledge to yourself .. but you prefer to share it with other sufferers who are lost .. so that they can find your answers and feel empowered by them .

👏👏👏👏👏. Well done Greygoose and Thank You

....And stay well

Luv Mx🌹

greygoose profile image
greygoose in reply tomadge1979

Thank you, and you're welcome. :)

Eliize profile image
Eliize

Thank you for sharing your story.

greygoose profile image
greygoose in reply toEliize

You're welcome. :)

PRJ20 profile image
PRJ20

Just a huge THANK YOU greygoose from my ❤️ to yours 💕...3 years late! (and before I've read parts 2 and 1...I've always been backwards in coming forwards!! 🙃)

greygoose profile image
greygoose in reply toPRJ20

Well, does it really matter what order you read them in? It's crazy anyway so one more twist and turn won't make much difference. Glad you enjoyed part 3. :)

Dandelions profile image
Dandelions

I once walked into a doctor's office with my child, who too said 'I'm the doctor'. It wasn't a good experience either.

PRJ20 profile image
PRJ20 in reply toDandelions

I've had a few experiences like that, too, even if they haven't actually said it they've oozed it from their... "An 🍎 a day keeps a doctors ego [and nonsense] at bay" could be our new mantra?!

From one of greygoose other posts! lol

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