Got a smart new Endo who taught me not to be so smug

[mickstability]

I'd been feeling fairly pleased with my overall T4/T3 combo dose, arrived at after considerable trials and tribulations.... BUT - oh come on, there's always a but, after heroically managing to stay more or less alive for 35 years since the thyroid chop'n'fry - I'd come to suspect that normal wasn't quite cutting it - you know the score; creeping hypo symptoms: tinnitus, depression, restless leg, cold sweats, hot sweats, an increasing intolerance of Daily Mail readers - I knew something had to be done.

So I got myself a new Endo who said : ' Sounds like you're going hypo late in the day - split your dose half & half morning & evening, you're trying to ignore your condition when you should be paying it some attention.'

And of course they're quite right - I'd forgotten to pay attention to my condition as I'd tried to 'normalise' myself too far, which is silly considering how much effort I (& this community) had put in to get a working model of me back on the road.

They also booked me a Dexa scan to check the insane T3 wasn't boiling my bones away, showed a keen understanding of T3 politics and generally were a breath of fresh air compared to the somewhat Jurassic consultant from whose list of unfortunates I've extracted myself.

Pip Pip!

[greygoose]

Sounds more like you need an increase in T3, rather than just splitting your dose - what good is that going to do? Sounds a bit lame, to me.

[mickstability in reply to greygoose]

High dose T3 got me back on track, but left me with a load of surplus Calcium which for some reason manifests itself as hard white subcutaneous spots. On my face. So I'm keen to avoid upping the T3 for now.

[maggiesloper]

That's interesting. Do you have any idea of the effect of T3 on bone density? I suspect 20 years on thyroxine replacement has Ben the root cause of my spinal degeneration and osteopenia . How can I find out more?

[PatsyCline in reply to maggiesloper]

Yes I would also be interested. Have been on Levi for 10 years and have been diagnosed with osteoporosis.

[Marz in reply to PatsyCline]

drmyhill.co.uk/wiki/Osteopo...

Lots of useful information about bones in the above link

[mickstability in reply to Marz]

I've no problem with this site other than (there's always an other than,eh?) it doesn't cite proper references for it's opinions - references: Sarah Myhill Ltd doesn't cut it for me. I'm not saying she's wrong, just that her peers aren't rushing to say she's right.

[Marz in reply to mickstability]

So what evidence do you have that her peers do not rush to agree with her ? Having her Newsletters will keep you up to speed with the research 😊

Docs too scared to step outside the box of Guidelines that prevent them from delivering good medicine - so would not support anyone openly that has lifestyle solutions.

Dr Myhill covers many conditions - so which do you not agree with - surely not all .... ?

Please - which research papers do you want me to post ? - TSH and osteoporosis ?

I was T3 only for several years and had a scan due to Dr's panic - almost 99% good result at 71 - he was amazed and I left him scratching his head.

Same happened with the Gastro who after a colonoscopy could not believe how healthy my gut was after gut TB and years of problems with Crohns and surgical interventions.

So for me health has to be tackled by seeking the root cause and not being too concerned about research papers - especially if financed by Big Pharma and peer reviewed by their mates.

Off to check out the true meaning of 'old lags ' as mentioned by you below ....

[Marz in reply to maggiesloper]

drmyhill.co.uk/wiki/Osteopo...

[shaws in reply to maggiesloper]

First, I am not medically qualified.

I'd look at both your Free T4 and Free T3 result over the years.

Probably you've not had an optimal dose all those years and if FT3 has been continually low when they could probably have prescribed NDT which would have replaced all of the hormones your thyroid gland could not.

These are a couple of excerpts re levothyroxine:

Levothyroxine is the most commonly prescribed drug in our nation and it poses a hazard for bones. Prescription medications that contain thyroxine such as Levothyroxine, Synthroid, etc. or thyroid hormone replacement drugs are linked with bone loss and osteoporosis. Unfortunately, many times the consumer is unaware of this long term outcome. Too much thyroid medication or poor management of the medication can cause increased bone loss and risk for fracture. The development of osteoporosis can occur with using thyroid hormones for several years. This is a risk for most consumers who are put on Synthroid or other thyroid meds for life.

Osteoporosis induced by mismanaged medications creates a potentially serious health hazard. It is often overlooked, dismissed, or occurs from lack of knowledge. The risks apply to men and women and include the 25 year old woman with Hashimoto’s or the Baby Boomer with sluggish thyroid who uses thyroid hormone. Both often end up using the medication for the rest of their life.

Levothyroxine, Synthroid, etc. or thyroid hormone replacement drugs are linked with bone loss and osteoporosis.

wellnessresources.com/news/...

Repeat sentence from above:

Levothyroxine, Synthroid, etc. or thyroid hormone replacement drugs are linked with bone loss and osteoporosis.

[teenarocks in reply to shaws]

So what are we to do about it when we need to take these hormones for life?

[Raucous]

I would also be interested in whether there is info/research about T3 and bone density because my Mum has osteoporosis in her spine & has been on levo for, I don’t know, at least 30 yrs. I am on Ndt/T3 and predictably my GP said with a suppressed TSH I would get osteoporosis - I begged to differ.

[Marz in reply to Raucous]

drmyhill.co.uk/wiki/Osteopo...

[Hidden in reply to Marz]

Thank you for the article I have printed it out for reading over the weekend.

[Marz in reply to Hidden]

It is a complete website covering every condition Dr Sarah Myhill deals with on a regular basis in her Clinic. She was a NHS GP but found she struggled to treat people correctly. So much common sense and a down to earth approach .... hope you enjoy it. I loved her book - Sustainable Medicine - which would be a great model for future medical practice.

At her own expense she has set up an on-line Clinic where people can access treatments with various people and have consultations

[mickstability in reply to Raucous]

The wisdom when I had my TT about 35 years ago was that TSH should be fully suppressed. I brought this up in my meeting (above) and my new Endo said 'Ah, yes, that's what we used to think.' I said that I thought that was in order to lessen the recurrence of the cancer. We both had a little think about this, and agreed that even if the cancer came back now it wouldn't have enough time to be able to kill me before I died of other causes - and that a detectable TSH would be easier for them to deal with. I told them ( determined not to have their gender be an issue in all of this) that my previous Endo doubted that my TSH would ever recover after so many decades being suppressed, to which they replied ' I don't see why it shouldn't - there's nothing compromised about your Pituitary gland.'

Old lags on this site will see why I'm rather pleased to have met this promising young endocrinologist.

[shaws in reply to mickstability]

I laughed at his response. It is also too awful.

[Fruitandnutcase]

Funny how all these doctors tell their patients they will get osteoporosis without ever offering them repeat DEXA scans to check how their bones are doing over time. Suppose these doctors have the gift of X-ray vision to enable them to diagnose just by looking at their patients.

[helvella in reply to Fruitandnutcase]

Fruitandnutcase,

First offer them an initial Dexa...

[Fruitandnutcase in reply to helvella]

Exactly! But of course that might be a waste of money when it might take years of follow up DEXAs before there are enough changes to prove the doctors are right. Just scare the patients into obedience.

Gosh even I can’t believe how cynical I am this morning!

[gabby57 in reply to Fruitandnutcase]

“If there was anything that depressed him more than his own cynicism, it was that quite often it still wasn't as cynical as real life.”

― Terry Pratchett

[SilverAvocado]

Very well written post, I had a chuckle

Sounds like you're running a high freeT3? I do too, and at a certain point I found I was feeling at my very worst in the late afternoon/evening. Would be a zombie on the sofa or bed, with all the aches and pains, whereas in the morning and after lunch I was a lot more mobile and comfortable.

When I started splitting my dose it was as good as a dose increase. Not only was it a step up in energy levels in the day, but I even felt better first thing in the morning when I was taking my first dose.

[sue_b]

Hello folks

regarding the DEXA scan, is there blood work, that over time, would give an indication of deteriating bones? Also, Mickstability, I am going to PM you for the name of your endo. Thank you in advance

[Simba1992]

On Dexa scan and osteoporosis, an interesting article.

raypeat.com/articles/aging/...

[mickstability]

Thanks everyone for your likes and responses - this site has really grown since I was last here - and it's great to see some sage comments from people I came to trust and respect. So, with about 60 responses in all so far, the thing that strikes me is Dexa - If you've had a TT you're definitely at risk of developing Osteoporosis, so you should, like me, have a Dexa scan. And then in a few years you should have another one, so the Medicos can see what's going on. These Dexa scans are very simple and quick - almost as quick as a chest x-ray - so I reckon they shouldn't be a problem if you ask your GP to book one - their CCG should wear it.

Perhaps if everyone on here taking T3 and/or T4 gets a Dexa scan every 5 years we'd sort the bone density problems earlier, and as a by-product get some calcium supplements that didn't taste like a packet of gone off Refreshers.

[greygoose in reply to mickstability]

Actually, vit D3 and magnesium are far more important for bones than calcium. And, taking any calcium supplements is a bad idea.

I guess what you're saying, above, is that taking high doses of T3 for an extended period has caused calcium to leech from your bones into your soft tissues. Perhaps it might be worth trying taking vit K2 - MK7 to try and coax it back into the bones again.

Have you had a DEXA scan? What were the results? How much T3 were you taking? For how long? What was your FT3 during that time? Sorry for all the questions, but you brought the subject up! It would be nice to have all the details, rather than speculating. Because research hasn't provided any hard and fast answers to this 'boney' question, and it would be nice to have some first-hand data.

[mickstability in reply to greygoose]

No useful point in being a cohort of one. Fancy backing up your statement that taking any calcium supplements is a bad idea with some evidence?

I had a Dexa scan about 10 years ago, which is why I'm keen to have 2 sets of data to compare.

I'd be keen to put the calcium in my face back to somewhere less public, and thank you for your suggestions.

I've been speculating for decades, and will continue to do so for as long as the mood takes me.

Thanks greygoose for your insightful posts from which I derive great benefit

[greygoose in reply to mickstability]

Well, if you have a look through my posts, you'll see articles I've posted about the dangers of calcium supplements.

[mickstability in reply to greygoose]

I just didn't like them so didn't take them. I've got my COPD taking precedence in this cold weather - still managing to get to work for 8.00 though.

[greygoose in reply to mickstability]

Which just goes to show how we can sometimes do the right thing for the wrong reason!

[Fruitandnutcase in reply to greygoose]

In case there is anyone left who hasn’t heard of my physiotherapist Pilates teacher’s views - it is vitamin D we humans should be taking for strong bones, not calcium and milk is for baby cows.

[greygoose in reply to Fruitandnutcase]

Totally agree with her, Fruity! Absolutely right. But, I would include magnesium.

[Fruitandnutcase in reply to greygoose]

I have just discovered the most amazing magnesium tablets. Think they are called Mg Voost - they are big tablets that you drop into a glass of water, the fizz up like mad into a nice refreshing lemon drink. I like to drink it while it is still fizzing - carefully avoiding swallowing any of the tablet which hasn’t quite dissolved.

I can’t see what type of magnesium it is, I’m sure I could if I tried harder but they don’t seem to have any unwantedside effects and I’m pretty sure they have stopped the awful cramps I’ve had for ages. So yes GG, magnesium too. 😉

[greygoose in reply to Fruitandnutcase]

If it were the wrong type of magnesium - magnesium oxide, sulfate, glutimate or aspartate - they wouldn't cause side-effects, it's just that you wouldn't absorb the magnesium.

[Fruitandnutcase in reply to greygoose]

Thought it would act as a laxative? I must check what’s in my fizzy pills. Reminds me of that old ‘Plink, plink, fizz’ advert for Alla Selzer when I take them but with only one ‘plink’.

Just checked online - it’s mag carbonate is that worth taking?

[greygoose in reply to Fruitandnutcase]

It's good for indigestion and acid reflux. So, if that's your problem, yes, it's worth taking.

[mickstability]

This a reply to Raucous' question about TSH and Osteoporosis - I thought it sat better here.

The wisdom when I had my TT about 35 years ago was that TSH should be fully suppressed. I brought this up in my meeting (above) and my new Endo said 'Ah, yes, that's what we used to think.' I said that I thought that was in order to lessen the recurrence of the cancer. We both had a little think about this, and agreed that even if the cancer came back now it wouldn't have enough time to be able to kill me before I died of other causes - and that a detectable TSH would be easier for them to deal with. I told them ( determined not to have their gender be an issue in all of this) that my previous Endo doubted that my TSH would ever recover after so many decades being suppressed, to which they replied ' I don't see why it shouldn't - there's nothing compromised about your Pituitary gland.'

Old lags on this site will see why I'm rather pleased to have met this promising young endocrinologist.

[greygoose in reply to mickstability]

Well, I'm sorry I'm not Raucous , but she won't even see this because you didn't post it under her comment, and didn't flag her, as I've done, there.

I don't want to be a wet blanket - although I probably will be! - but I'm really not impressed by your new endo at all. Firstly, I don't think he even understands why the TSH should be suppressed in cancer patients. It not exactly so that the cancer doesn't come back, it's because the TSH - Thyroid Stimulating Hormone - can cause the thyroid to regenerate (although not enough to be of much use) and the cancer with it. And, although thyroid cancer is slow growing, it can spread to other organs - but perhaps that's what he meant by 'other things' killing you!

Secondly, there's a very good reason why your TSH might not rise after being suppressed for years, and that would be because your set-point has changed. Even though there's nothing wrong with your pituitary.

Thirdly, I fail to see why a 'detectable TSH' would be 'easier' for them to deal with. They shouldn't even be looking at the TSH now that you're on thyroid hormone replacement. They should be looking at the FT3, as you are taking T3, and dosing by the FT3. Doctors that just keep reducing doses to force the TSH to rise, are just keeping their patients sick. Seems he doesn't realise that. Your TSH is more or less bound to be suppressed if you take a decent dose of T3 - i.e. enough to make you well - that's what T3 does. Are you really prepared to lower your T3 just to raise your TSH just in order to keep this man happy? It's certainly not something I would do.

I don't think he's forward looking and in possession of information that the oldies weren't privy to. I just think he's under-educated in thyroid. Follow him at your peril.

[Raucous in reply to greygoose]

Got it thanks!

[greygoose in reply to Raucous]

You're welcome.

[SilverAvocado in reply to mickstability]

I had my TT in 2013, also for cancer, and my Endo wants a suppressed TSH. She's even happy with an over-range freeT3.

Although as she knows pretty much nothing about thyroid I don't think she'd have any idea why you wouldn't want an over-range freeT3 anyway.