Thyroid UK
87,423 members102,129 posts

Doing the same thing and expecting a different result?

It's been a while since I posted as opposed to writing a comment..

Backtrack time: Two years ago I finally finally got the endo to raise the dose to 150 mcg thyroxine. It was great! I felt just as fresh and alive at the end of a work day as I did in the morning. 7 to 7.5 hours of sleep was what I needed and was not taking any daytime naps. My hair was growing back, I was able to move forward fitness wise which took several months, and whenever I managed to overdo things so my back was saying nasty things to me, a day later I was fine. Bowel movements like clockwork. Losing weight gradually due to having more energy to be active. Brain was working much better. I was not searching for words and not finding them. You name it, I was back to being me. I was gardening at my allotment, entertaining friends who came to visit and stay over during the summer, going grocery shopping and cooking was no big deal. I was cheerful, chipper, energetic. Regained my sense of humour.

So what does she do in January 2017? She suggests that I reduce the dose. I said 'no'. I continued along for another 8 months at 150 mcg and living the life. When I was back in August 2017 she says to me 'possibly you have some sort of emotional disorder. Either you are very low or you are very high.' (Excuse me but what idiot isn't happy when they feel great? And who isn't unhappy when they feel like a halfdead? What is wrong with these doctors? )

Then she says (which we all here know full well is bogus) that TSH is suppressed and bones and heart and blah blah. I told her to continue writing 150 mcg tablets and I'd skip one tablet per week. Why? Because this way I'd still be able to take it every day if it turns out that reducing the dose would be proving to be a bad idea. I must be able to have control over my own well being. I cannot tolerate anyone having control over my life, limiting my access to what I know is right for me.

Dose reduced since August 2017. October was the worst month. Half of my hair fell out. Yes, half. I literally pulled a wig's worth of hair out of the bath plughole on two occasions. Other people noticed that I am going bald so it's not my imagination. I had to tie my hair back to reduce the amount of hair that was falling all over the place. Even so, I was having to pick hair off my clothes and food.

Recovery from physical activity went down the drain. I had been using a rowing machine at home and gradually was no longer able to use it because the days I exercised, by half way through the day my energy level would crash.

And the depression started up because I couldn't get my life done. I needed to sleep 10 hours out of every 24 just to function. Waking up unrefreshed. I'd go to work already tired and was ready for a nap by 2 p.m. The rest of the workday afternoon was a torture of physical pain and mental fog. The days I didn't work, I could hardly wait to take an afternoon sleep of anywhere from 1.5 to 3 hours depending on how much sleep I got at night. It was like there was an absolute requirement of 9.5 to 10 hours. My back pain would show up and not leave. I was taking medications for muscle spasm, stuff I barely took for two years. I had to renew prescriptions for these thing. I was only getting one decent bowel movement every 5 to 7 days. Good thing I eat enough soluble fibre that it wasn't concrete. Housework has not been been done properly for the past two months (just had no energy left). Grocery shopping and cooking became something to dread. Even taking supplements has been neglected because I look at the bottles and tell myself 'later' or 'tomorrow'.... and after many 'tomorrows' eventually I take them and then it's another set of 'tomorrows'. I do take the thyroxine religiously because otherwise I'd be dead.

I know I've gained some weight but I'm not going to look.

Last week on Tuesday morning (skipped dose on Monday and did not take anything on Tuesday before the blood was taken) 9 a.m. got bloods taken. Then I took two tablets and have continued taking 150 mcg daily since and will continue like this. Appointment with endo is end of January. I must start taking the right dose or else I won't be able to function anymore. Gardening season is coming up, starting seeds indoors, and I have a cat that was just now diagnosed with Polycythemia vera. I must be able to cope with this. He's at the hospital until tomorrow and they are doing all the right things for him. Eddie is such a self confident, super chilled out, pleasant cat. Never met a vet who was not impressed by this cat's demeanour. There's some major things to sort out here and I don't need to be overwhelmed. Good thing I started full dose a week ago!

I will be creating a sort of Excel spreadsheet of thyroid life experience for the endo. What it was like to be on 112, 125, then 150, and then down to 128.....

I know my TSH will still be very very low even on 128 because the pituitary doesn't respond properly. She fooled around for a couple of years with T4/T3 combos. My HbA1c went up because T3 screws up my glucose metabolism. My body is adjusted to a lowish fT3 after many decades and it just doesn't do well with an fT3 above 5.0. I'm not including that life experience on the spreadsheet. T3 is not for me.

At least I'm not getting heart palpitations to die for which were happening on 112mcg. And I don't feel like I am walking through water. But I was moving slowly and had no enthusiasm for taking even short but necessary walks. It was somewhat frightening to go from taking long walks in stride to not looking forward to any walking at all.

One week with the full dose and I'm noticing that some things are getting gradually better. Bowel movements have returned. 5 days in, I felt better for the first couple of hours in the morning.... now feel better until about noon. Not desperate for an afternoon nap today although did nap yesterday for several hours. Still have not completely cleaned up my place. But have done the laundry.

37 Replies
oldestnewest

Gabkad,

My endo has been saying for 2 years that she would like my TSH less suppressed. It has been <0.01 since 2012 and she would be happier if it were 0.05. After 3 Levothyroxine dose reductions TSH didn't budge but FT4 and FT3 which were always within range dropped considerably and I began to feel less well. She wanted to reduce T3 dose. I declined. Told her I would rather feel well today than worry about increased risks of atrial fibrillation or osteoporosis in 10 years. To which she replied "It may not take that long!" Charming!

Nevertheless, I said I would not agree to a dose reduction and if she altered my prescription I would buy what I needed on the internet. I am not going to be crippled by ill health now when sufficient thyroid hormone prevents it even if it has adverse health effects in the future.

8 likes
Reply

Good for you. I think we have stubborn TSH syndrome. ;) If mine goes to 1.0 I'm dead in the water.

I've been reading your comments here recently and they are eminently succinct, to the point, and excellent. I think the grey matter is functioning excellently.

3 likes
Reply

Gabkad,

Thank you. I hope your endo sees the light and prescribes what you need, not what she thinks you should manage on.

2 likes
Reply

Clutter me too, need to earn an income now and if I keel over early it can't be helped. Better than years of miserable life eeked out in depression from lack of thyroid hormone and poverty.

4 likes
Reply

"Insanity: Doing the same thing over and over again and expecting a different result"

Albert Einstein.

7 likes
Reply

Apparently not.

Reply

Brilliant

1 like
Reply

It's not 100% he originated the phrase but I'm going with it.

1 like
Reply

Why must doctors make our lives like hell, when we've already 'been there' 'done that' and know what suits our bodies more than they do. For instance the TSH is a smoke-screen and I do not know why they keep pronouncing lies about us having osteo or heart disease. We're more likely to get those with insufficient doses.

Print off the following and send it to her and educate her and any other doctors that insist on adjusting doses and making us more unwell and worrying about not getting back to a reasonable good health.

healthunlocked.com/thyroidu...

5 likes
Reply

Most likely to get osteoporosis because too tired to do weight bearing exercises and get out there in the sunshine.

More likely to get heart disease due to lack of exercise due to fatigue caused by low thyroid.

6 likes
Reply

Yes, gapkad, you are definitely right.

2 likes
Reply

Bl**dy meddlesome medics...

If memory serves, you're in Canada, which has severe restrictions on importing personal meds without prescription. I don't know the details though. Any possibility of some sort of arrangement with a US doc who could send you levo prescriptions....?

1 like
Reply

I don't need a US doctor. I just have to tell her that I refuse to permit her to change my prescription because there has been zero evidence that taking 150 mcg is deleterious to my health but lower doses are.

Legally she cannot change the prescription without my consent. I will push my rights around.

By not permitting her to change the prescription in the past, she got the message. The fact that I was willing to go along with one of her silly experiments does not change anything.

Same b.s. as with the HRT with my GP. She can't stop prescribing until I tell her she may stop. I know my rights now.

8 likes
Reply

Interesting...If only UK patients had the same right.

3 likes
Reply

I've heard people mention we have this right in the UK. Don't know any of the details, or if I'm mid remembering, though. Of course doctors won't tell you about it if it is true!

2 likes
Reply

Hmm...I wonder where we can find out? Would be very useful to know, given the sheer numbers coming on to the forum now with horror stories of endos and GPs drastically reducing doses.

1 like
Reply

Patient's rights in Ontario: settlement.org/ontario/heal...

You may have something like this in the U.K.

2 likes
Reply

Thanks, I'll look into this.

1 like
Reply

Things like patient access to records began in 1994.

1 like
Reply

We were allowed limited access to view our records from around 1990, and the right to access full records from 1998, under the Data Protection Act. We have, supposedly, the NHS Constitution to rely on, but it isn't backed up by rights in law.

I've been looking at your link, and while patients' rights in Ontario are expressed in more egalitarian language than we find in the baby-talk of NHS communications, it doesn't get into the nitty-gritty.

Am I right in thinking that alterations to medications and dosage come under the right to:

Give or refuse consent for any procedure, and for any reason. ?

Reply

Here is the NHS Constitution, which contains some loosely worded legal rights for patients, but an awful lot more in the way of 'values' and 'pledges'.

gov.uk/government/uploads/s...

Reply

The NHS belongs to the people. It is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

Am I living in a parallel universe?!

Reply

Yup! :-)

Reply

I've had to stop reading it, it's not helping me reduce my high cortisol levels!! I will come back to it though. Thanks for the link :)

1 like
Reply

You're welcome. :-)

Reply

The patient will be at the heart of everything the NHS does. It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients

Well, they say laughter is a good medicine. Does wincing laughter count?

Reply

It has to count for something, ShinyB. ;-)

Reply

I'm actually speechless. Just read those two extracts out to my husband. Even he said, "Well, that's not been your experience, has it?!"

Words fail me.

1 like
Reply

Yes.

I think some doctors have misinterpreted this in regards to prescribing of opiates. One of the reasons for why we had a robust street drug industry for drugs like Oxycontin and Percocet (same but with acetaminophen). Now, of course, the Chinese are sending fentanyl and carfentanyl over through sales on the dark web. And people are dropping like flies. Of course even drug dealers don't want to lose clients.......

But as to let's say the HRT or thyroxine: there needs to be some sort of evidence to bolster 'concern'. And it's really up to an educated patient to accept the risks. That's part of the 'responsibility' portion of the patient's rights legislation.

Thing is, she wrote the script for 150 mcg. She can't unwrite it now unless I agree for her to do so. I would be bonkers to insist on taking a dose that is causing me to have adverse symptoms. It wouldn't make logical sense. Some speculative stuff down the road like osteoporosis or cardiac arrhythmia is just that: speculative. It's not a good thing for doctors to base their patient treatments on speculation. Whatever happened to 'evidence based medicine'?

Reply

Whatever happened to 'evidence based medicine'?

What, indeed? Like UK medical professional 'guidelines', the applied meaning is now a world away from the original intention. If you haven't seen Dr Anthony Toft's latest thoughts on these subjects, here's alink you might find interesting:

rcpe.ac.uk/sites/default/fi...

As for patient responsibilities, I agree, of course. I escaped from my 20 year levo hell and now take T3 alone. I take responsibility for the risks, but I've no idea whether they will ever constitute risks for me personally - not until they happen. My heart reacts to T3 long before other peripheral tissues, but I'm forced to take a high dose to counteract that peripheral resistance. Not easy, any of it, but patients should have the right not to accept prescriptive authoritarian 'care' from health professionals.

Good luck with the levo, and I hope you eventually get back to where you were. Don't know if you've read, but Dr John Midgeley ('diogenes') has recently referred to the physiological and ethical implications of tinkering with patients' TH doses.

1 like
Reply

Gabkad, I’m so sorry you’ve been through such a wringer! And after feeling so well too. It can’t be good for us to be on such a roller-coaster with our health. I loved your description of feeling well, made me remember what it’s Like to actually Feel Well :-D I’m off to my endo this weekend, determined to get the right increases in my meds to move up from being 40-50% well into the Actually Feeling Well range.

Please be careful with adjusting your meds to accommodate your doctor. I did that naively early on in my treatment, just as I was starting to feel human again. Same reason “I’d like the TSH a little higher” says my previous endo. I plummeted to about 5-10% of my old self and I have been scrabbling out of that hell-hole ever since. And for me, it was not as simple as increasing the T4 back to what it was. I think the plummet itself caused additional damage to my system. Being unwell is such a stress on us in itself. Soooo... no more experimenting Gabkad. Just get well and Stay Well. Easier said than done, I know. Sounds like you’re right on it though with your spreadsheet. I do similar. I respect the knowledge and experience my current endo has, and I make sure he has enough hard data (spreadsheets are great for that ha ha!) to Know my symptoms. And he is treating me for symptoms now, just not fast enough for me!!

Feel better soon, hugs, BBxx

4 likes
Reply

So sorry to hear this - that endo does not have to live with undermedication you do. Just stick to your guns and tell her straight how it is affecting you and ask her how she’d feel if she lost her hair and people were noticing it and commenting. I bet she’s gobble up the extra Levothyroxine if it was her locks hitting the deck. I was always loosing prescriptions and my medication so ended up with a surfit as I found lost prescriptions and bluster packs - quite useful to have a little stash! Why can’t they just listen to their patients and aim to keep them well? Good luck with your tests and getting her to see sense - is it a bitchy power game she is playing or what? ☘️🍀☘️

3 likes
Reply

Yes, she is a bitch. I schedule my appointments for the end of the day because otherwise she feels the need to grandstand in front of the interns/residents.

It's really difficult to find a good endo even over here in Toronto.

4 likes
Reply

What a wonderful description, TSH110!

I'm adding that to my repertoire, & know someone that justly describes! ;)

1 like
Reply

Fantastic descriptions of being well and unwell. I have saved this page so I can show it to friends and family when the need arises!

Being able to overdo it, but then being fine the next day is one that really resonated with me! I'm starting to get to the right does and that's a thing I notice - very few consequences for getting overtired. Although I did dislocate my knee over Christmas which I think is because I had the most active week ever the week before :p

Constantly policing myself to keep the payback at bay is something I am very hopeful I can leave behind. It is very boring having to be well behaved all the time!

I hope the dose increase continues to go well for you!

1 like
Reply

Thank you. :) I hope it all helps.

2 likes
Reply

That is one rollercoaster of a description. Hope you continue to feel improvements. I've lost count of the number of times my jaw dropped reading your post!

2 likes
Reply

You may also like...