breidden

[breidden]

Does anyone know why, in people using NDT, the TSH readings tend to be very low, even when the T4 and T3 are within normal ranges? My GP is concerned that my low TSH readings mean I am at risk of osteoporosis, but since I am not hyperthyroid I don't understand why. My T4 and T3 are within reference range and my serum calcium also. He wants to put me back on to levothyroxine.

Thanks for any help you might be able to give.

[greygoose]

Because that's what T3 does, it suppresses TSH. But TSH has nothing to do with bones, and low TSH does not cause osteoporosis. I'm sure someone will come along with a link to a scientific paper that will show just that.

[breidden in reply to greygoose]

Thanks, that's very helpful.

[greygoose in reply to breidden]

You're welcome.

[pennyannie]

Hello Breidden and welcome to the forum :

Is your NDT on prescription through the NHS ?

Just asking as I too had RAI thyroid ablation for Graves Disease but refused any treatment option other than T4 monotherapy so now I self medicate NDT and am much improved.

NDT is derived from pig thyroid, which is dried and ground down into tablets referred to as grains with each grain containing trace elements of T1. T2 and calcitonin + a measure of T3 and T4.

Not many doctors prescribe or know how to read thyroid results - let alone results of NDT blood tests -

We track and monitor NDT on the Free T3 reading -

when optimally medicated your TSH will be suppressed and this does not matter -

and you Free T3 reading may well now be higher in the range than your T4 reading - compared to when on T4 monotherapy.

I see you were taking Levothyroxine - do you have any bench mark readings to compare to and do you feel any better having switched to NDT ?

Being hyperthyroid for any length of time and with metabolism running fast with a suppressed TSH and not on any medication to slow down the body - will cause various physiological changes within the body - and issues of repairing , replenishing and restoring the body to optimal levels will be jeopardised - but -

Once hypothyroid and with a ' slowed ' metabolism and on thyroid hormone replacement especially after RAI thyroid ablation the TSH is a very unreliable measure of anything and why we need to be dosed and monitored on our Free T3 and Free T4 readings :

Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH relies on as working well - is now broken as there has been a medical intervention and your thyroid burnt out in situ - and this circuit loop now disabled -

RAI thyroid ablation tends to trash vitamins and minerals, amongst other things -

and no thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal so this might be another to look into if all your symptoms of hypothyroidism have not been resolved.

[breidden in reply to pennyannie]

Thanks Pennyannie for all that detail. I don't get my NDT via the NHS - I wish! I pushed very hard for it but they're just too nervous of it. I was on levo for a year (2012) after thyroid ablation and RAI and felt unwell. Tried Armour and felt as though windows were opening in my brain! Never looked back but moved off Armour as it became too expensive, and on to other NDTs. Currently on one from Thailand (not sure about it) but will try a New Zealand variety from grass-fed bovine source. (Are we allowed to mention brand names on here?) I consulted a functional medicine nutritionist for years after my treatment - she was excellent and I have been on optimum levels of ferritin, folate, B12 and Vit D (amongst other things) ever since and have felt well. All my thyroid levels are good and manageable. It's so frustrating that your standard endocrinologists won't accept that people without thyroid glands do not do well on T4 alone.

[pennyannie in reply to breidden]

Were you diagnosed with Graves and why you had RAI thyroid ablation ?

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

Some people can get by on T4 monotherapy - the cheapest treatment option.

Some find that at some point in time T4 seems to stop working as well as it once did and that by adding in a little T3 - probably at a similar dose to that their thyroid once supported them with they are able to restore T3/T4 hormonal balance and feel better.

Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 - but you can't live without T3:

Whilst others find their health restored better taking NDT - the original treatment option for hypothyroidism, successfully used for over 100 years and available on the NHS up until around 2000 - when financial constraint - rather than medical need - started to be implemented throughout the NHS -

and currently in primary care your doctor can only prescribe T4 with a 2nd line option being antidepressants - which don't work - but leave most patients thinking it's all in their head, their fault and or not believed by their doctor.

You now need to be referred to a NHS endo to be assessed as to your need for anything other than T4 - and we face a post code lottery as there are some areas where ICB restrictions place financial constraint rather than medical need at the forefront of the NHS agenda.

I have been taking Thyroid S for 6 years + now - there have been some batch issues after Sriprasit, the manufacturer, reformulated the medication - that were prefixed 22 over the past couple of years -

I've just had to bite the bullet and throw away a couple of bottles and now ok again since I've moved to pre-fixed 23 batches :

Thyroid S is a recognised treatment option in Thailand and used in the hospitals and doctor's surgery when T4 alone does not fully restore patient health and well being.

I think I read there were some issues with ThyoGold - hopefully that is now resolved.

We can openly talk about brands - but can't openly discuss suppliers or sources of supply - but we have a Private Message option on the Chat Icon - looks like a paper plane - which allows private messages between any two forum members.

You'll find this alongside your Alerts and Profile Icons and if you get lost just press the Profile button and this takes you back to everything you have ever written on this open forum and all your replies.

You can read anybody's Profile by pressing the Icon alongside any message they have written if interested in their thyroid journey.

Ok - so who is monitoring you on NDT - your primary care doctor is likely out of his/her depth as I'm not sure treatment with NDT is even covered any longer in medical school since Big Pharma finance the medical schools and were in direct competition with NDT back in the day when they launched T3 and T4 on the back of NDT.

Most recent research into RAI thyroid ablation for Graves :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most well rounded of all I researched for Graves Disease - if this applies to you - is that of Elaine Moore - books and website - elaine-moore.com

[breidden in reply to pennyannie]

Perhaps ablation is the wrong term - I had my whole thyroid gland removed surgically because of cancer. It had not spread, and 13 years after treatment I am still clear.

A nutritionist was keeping a very close eye on me for years and we ran all sorts of tests, including thyroid. Plus my GP has been doing routine yearly (sometimes more often) thyroid function tests. My levels have always been good and I have no intention of going back onto levothyroxine.

Can you tell me what/where you heard about possible problems with ThyroGold? I've been taking Thyroid-S since January and had quite a bit of hair loss 2-3 months in.

Thanks again for your help.

[pennyannie in reply to breidden]

Ok - so you had a thyroidectomy and RAI as a back up treatment.

The hair loss could be down to a few things, auto immune issues, low iron levels, non optimal levels of thyroid hormones -

Are your thyroid blood tests based on Free T3 and Free T4 readings - and have these levels dropped off at all ?

I doubt it is related to Thyroid S -

ThyroGold is sold as an OTC supplement and does not state content - I don't doubt it works but it's not regulated as closely as a medical treatment which must comply, within the tolerance range - to that stated on the product.

I think i remember reading a post on here about there not being any stock - I can't remember exactly when this was, but probably over a month ago now , so if there is stock availability now - it was just a temporary issue - so no worries, and forget I said anything.

[breidden in reply to pennyannie]

Thanks again.

[pennyannie in reply to breidden]

Did you find the PM I sent you = your Chat icon should have lit up and with you having received an email - not looking for a reply as such - just thought I'd show you how this Private Message page works :

[KrazyKatMT70]

“Subclinical hyperthyroidism is when you have low levels of TSH but normal levels of T3 and T4.”

When I had a weight loss due to my sugar getting high, my TSH was below zero.

Remember all your glands are connected. Pancreas,thyroid, adrenal . An endocrinologist can put all the pieces together. The reason for levothyroxine instead of a natural hormone, it that if you have Hashimoto’s Thyroiditis, the immune system doesn’t recognize the synthetic hormone as opposed to a natural one. Unfortunately, it’s all trial and error.

I’m on thyroxine since 1990. I started on NDT. But I have Hashimoto’s. My doses have changed over the years. Mostly depending on weight. I’ve been on .150mcg, .137, .125 , and currently on .100mcg. You have to change doses slowly, because the thyroid hormone affects your heart rate. Too high=Fast heart rate . Too low= slow heart rate .

I would do some research online, and definitely go to an Endocrinologist .

[breidden in reply to KrazyKatMT70]

Thank you

[tattybogle]

The info in these posts may help:

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

How low is your TSH ? if it is 0.04 or over, this post has useful references to use on GP's , (if it's below 0.04 the post is still worth reading but won't be any help with GP) : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

[breidden in reply to tattybogle]

Thanks.

[thedoghouse]

Have you been tested for low bone density? The test, a Dexa scan only takes 20mins or so and would give you a definitive answer as to the state of your bone strength. Good luck!

[breidden in reply to thedoghouse]

Thank you. I'm booked in for one.