Back to square one, I miss ndt so much..

[DonnyJam]

Hello everyone.

As I'm writing this I'm expecting there are many of you in my boat or a very similar one.....

For years after diagnosis (hashi hypo) I struggled with my health while trying to get settled on levo, through ups and downs, under medicated, over medicated then probably resistance to levo and probably high rt3, anyway I never got any better on it...

Then I discovered ndt (thiroyd to be precise) took me a while to get right, had all the same issues at first, under then over, up n down then one day I turned a corner and felt brilliant on ndt and t3, I also lost around 4 or 5 stone, I really felt great, out regularly running 3 to 6 mile per day and then the ndt supply dried up and now I'm back to square one, currently taking metavive and t3 but it just doesn't feel like it's working, I've gained all the weight back along with lots of hypo symptoms, I've got no energy to exercise, my fitness has dropped to what feels like that of a 70 year old that's smoked 60 fags per day for most of their life even though I've tried to keep up with my usual fitness training.

I know you're all going to ask what my current levels are but I've been going it alone without a gp or endo for a long time as I'm confident I can get it right by how I feel. It's the medication that's not right not me that's wrong...

I'm kind of just wondering how everyone else is managing to get through now it's near on impossible to source legitimate ndt.

If you got this far, thanks for reading

Jamie

[Lora7again]

I have sent you a pm.

[nightingale-56]

I am in very much the same boat as you DonnyJam, and only have one more week of WP Thyroid. I do hope this comes back on the market. At the end of November I began to take Armour, as thought I should try something else and was able to get this. I might just as well have taken Levothyroxine as it had the same effect on me and I could hardly walk. At that point I still had a month's worth of WP, and a week before Christmas day I decided I could not suffer any more and began my last precious tablets of it. I now have only 1 week left of this (with some Erfa on order since mid-December). Prior to beginning WP at the start of 2019 I was taking T3/T4 combination, which also was not that brilliant for me. Getting desperate, but not desperate enough to take heed of the recent scam on this site. Lora7again , I would very much appreciate a pm from you if you are able to help in any way.

[HollieBerry in reply to nightingale-56]

What recent scam? Not been on here for 5mths just logged in!... have I missed something?? 🧐 x

[helvella Administrator in reply to HollieBerry]

Have a look at several very recent threads - their subject lines are usually clear. For example:

healthunlocked.com/thyroidu...

[HollieBerry in reply to helvella]

Oh wow. Thanks for the info x

[Miffie in reply to helvella]

I had an email from HU. The pest has been banned. 🙂

[Hillwoman]

My husband is in the same boat as you, if that's any comfort.

After a long period of experimentation, he was beginning to feel much better on 180 mg (three tablets) of Thai NDT plus 25mcg of T3. Then the NDT ran out, and months of trials with Metavive with T3 have left him in the worst state of health he's experienced in 25 years. A dear friend has come to the rescue with her unwanted supply of Thyroid S (she's fine on Metavive), and when that runs out I'll probably order some Armour to go with the T3. He's taken Armour, NatureThroid and Erfa before now and found them pretty similar, though they were all older formulations.

Once the recalled US brands of NDT come back into production, you may be better off trying those rather than Metavive. They will be more expensive than Thai NDT though.

[reliablerebel]

Its possible you are overmedicated on metavive and T3 combo? Which metavive are you taking? I am on metavive11 - previously thai thiroyd. Doing very well on the metavive. It seems much stronger or works much better than I was led to believe. Please do a blood test to see where your levels are, the finger prick ones are cheap and reliable, if a bit of a nuisance to actually do them. What ndt were you taking, and how much? And how much T3 - and what are you taking now?

[DonnyJam in reply to reliablerebel]

There is always that possibility that I'm over medicating, I know the feeling/symptoms can be very similar but this all started when I decided to try pimpom products own brand of ndt, that's when I started to feel under medicated and did some research and found some forums with people slating their products. Accusing them of being fake and under dosed. Things improved on metavive but I'm still having what I'd interpret to be hypo symptoms. I've actually just ordered a finger prick test this afternoon so I'll soon have the answers. I was taking 2 metavive + 50mcg of t3 per day. That probably sounds a lot but I'm a big lad and when I was at my best and feeling great I was taking the same dose t3 and 2.5 grains of thiroyd

[reliablerebel in reply to DonnyJam]

well at least once you get blood test results you should have a better idea of where you are going. Do keep us updated!

[shaws Administrator]

I think it is disgraceful that NDT and T3 were withdrawn, due to the cost I believe but with regard to NDT that was through lies. It has been safely used (initially with no blood tests at all) since 1892.

However, if patients have had awful cllinical symptoms, withdrawing a replacement which restored them to good health is beyond comprehension.

The professionals are playing a russian roulette I believe on other people's wellbeing.

Those who make these decisions should actually have some hypothyroid or hyperthyroid patients on their lists. It's as if the professionals have some 'rules' given to them that they are afraid of going against.

When on NDT, it was cheaper because no blood tests were involved, it was only the clinical sympoms of patients that were considered and given small increases in NDT until all symptoms relieved (from 1892 onwards). No-one died through hypothyroidism from then on.

I would make a visit to your local MP and tell him of your predicament. He should bring it up in parliament or refer him to Thyroiduk.org.uk and Lyn Mynott might have more information.

[silverfox7 in reply to shaws]

Spot on! I’ve said the same to individuals that it has to work out cheaper abd is foolproof but then I looked at the Thai NDT I’m currently taking and it doesn’t seem in my experiment to work the same. I increased my dose, not by much, but soon started feeling overmedicated. So my body was gobbling the lot! Plus I have been on my usual dose for many years so the Thai one doesn’t work as my original medication which came from Canada. But I would love to know if anyone has an NDT that reacts the same as we have both mentioned. A fool proof NDT should be a win win situation. I would think many would end up taking more that they need so cost margins would be good for suppliers and we would, as varied individuals be very well as well. I was on one grain for nearly three years then found a few problems coming back so I was upped from one grain to two. Sadly when doctor left the practice insisted I took Levo!

[shaws Administrator in reply to silverfox7]

For 'professionals' to insist that levo alone restores health they are definitely not professionals because we, the patients, are aware if they've taken levo and are well they are not on this forum looking for advice and getting on with life.

For others, who are on this forum aren't doing searching for entertainment but how to restore their health and looking for help/advice.

[silverfox7 in reply to shaws]

Never been able to understand why we, the patients, get no help from so called experts but yes they haven’t a clue, aren’t interested or tell us it’s too expensive etc! Some of us may not fully understand what can help us etc but we do all know whether something feels better or worse. Shocking really!

I was fortunate that I was diagnosed same time as my GP. He admitted he had forgotten his student lectures! He was an Oxford graduation but at least had the sense to ask for help! He asked me to go to the surgery one evening and bring my husband and his lecture notes! At least I wasn’t afraid for the future anymore! A few weeks later I heard I was to be given NDT and the wait was for my doctor to source it and try it out first. Years later when my present GP said she knew nothing about it I bought my own NDT, asked her to refer me to another hospital and haven’t looked back!

[shaws Administrator in reply to silverfox7]

Your experience i.e. "Years later when my present GP said she knew nothing about it I bought my own NDT, asked her to refer me to another hospital and haven’t looked back!

Just goes to show how badly doctors/GPs and/or the BTA have fallen from knowledge to inept treatment of very unwell patients who don't recover on levothyroxine.

I had to self-diagnose and fortunate a First Aider suggested to get a blood test. Not one person whom I paid had an incling that a severely hypo patient sat in front of them. Whereas doctors like Dr Skinner and Dr Peatfield and others trained around the same time needed no blood tests to diagnose. Both went by the patients' symptoms and usually prescribed NDT or T3 for those not improving.

Maybe it's time I contacted those I saw and even had an operation that was completely unnecessary and recover what I paid - of course I wont do that. I was given antacids by another which caused immense pain.

Another point is that the BTA et al removed T3 and NDT from being prescribed despite NDT's success since 1892 (no blood tests then) and patients' recovered. I just do not understand why those 'supposed to have a qualification' have gone astray somehow and I wonder if they've also developed hypo as brains don't seem to be working.

We need to have more doctors like Dr S and Dr P, ones that use that special gift of healing a patient from disabling symptoms. For doing so, they were pursued as if criminals.

The fact, too, and even worse, that patients are now prevented from 'trying alternatives'. Its ridiculous and even criminal for not prescribing - far worse is 'telling untruths"about what improves patients' health who are now restricted due to the Medical Professionals 'guidelines'. The guidelines don't allow every patient to have restored health but are willing to prescribe levo only. which doesn't work for a section of hypo patients. They are not on this forum.

I have read a 'last' letter of a peron who foretold of her next step and left a letter for the coroner. I assume she thought it might change attitudes but it hasn't. It's terrible.

[Hidden]

Jamie,

Can I ask you what dose you took of your previous medicine and what you're taking of the current one?

[DonnyJam in reply to Hidden]

At my best, when I felt well for a decent period of time I was taking 2.5 grains of greater pharma thiroyd and 50mcg of t3.

On metavive II, I started out with 2 caps and kept on with my t3 as its been since and today I bumped metavive upto 3,this afternoon I actually felt like I had a little boost. I've felt that before though and had it subside after a day or 2 so we'll see and I've also ordered a finger prick test this afternoon also. Going it blind obviously isn't working

[waveylines]

Oh Jamie what a blow. How about going on another ndt? I use Acella NP. Works well for me.

[DonnyJam in reply to waveylines]

I'd be interested in knowing where I could get it from, the only place I could find were selling 100 half grain tabs for $100

[waveylines in reply to DonnyJam]

Am sorry we are not allowed to discuss places on posts. You can pm me. However I dont believe they supply to the usa.

[DonnyJam in reply to waveylines]

Cheers I'll pm you

[serenfach]

In the same boat here. I suspect we will need a larger boat....

[Miffie]

Have you tried Thyro-Gold? I would never judge just on how I feel I have blood test to check. Cant avoid some as the GP has me tested regularly despite self medicating. It’s never wrong to be sure.

[DonnyJam in reply to Miffie]

I used to go for regular tsh tests under while I was under the endo then he found out I was self medicating and discharged me back to my gp and they're just not bothered, used to get a request once in a blue moon but then I didn't hear anything for ages and then covid happened so I'm guessing theyre not going to request me in for routine bloods atm. I think thyro gold is off the shelves also due to covid?

[Lora7again in reply to DonnyJam]

You really should not be going by just your TSH because it is a pituitary gland hormone and it is the T4 and T3 that count. The TSH will always be low or even suppressed if you are taking T3 or NDT.

[DonnyJam in reply to Lora7again]

Yeah, I know tsh isn't reliable but can still be used as a marker... My endo used to send for a t4/t3 test if my tsh was way off what he wanted to see and my gp had also tested those on request before but she just wants me back on t4

[Miffie]

I, like so many others on this forum use private testing. The GP does what she can but the lab refuses to do T3 so I need that myself anyway. She has written to try to get the testing sorted as like me she knows it’s not about TSH it is FT4 and FT3 she really needs toknow for a proper conversation. Another GP at this practice suggested I may not have any thyroid health problems. It is worth seeing someone else.As for the importance of testing, I was initially treated with prescription NDT and it was not until I was tested in my thirties after twenty + years of treatment it was discovered I had been under medicated. Now many years and a few up and downs with the NHS I self medicate but would never dream of not checking things myself. After all a basic Monitor my Health thyroid function is not a lot for well being. Yes I see Thyro-Gold is off the market now. Lucky I am well supplied.

[DonnyJam in reply to Miffie]

I'm actually getting tempted to revisit levo with t3 as I never tried that before giving up on it for ndt. I'd be interested what my gp would say if I propositioned her by saying I'm willing to give coming back under your full guidance if you're willing to prescribe me with a t4/t3 combo. I have a different gp to when I first got diagnosed so maybe I'd be OK with her help, you never know.

[SlowDragon Administrator in reply to DonnyJam]

To get prescribed T3 on NHS you need to see NHS endocrinologist initially

Would need to get FULL thyroid and vitamin testing done before any consultation

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, or NDT make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3......NHS and Private

[e-mail]

Office won’t reopen until after New Year

[DonnyJam in reply to SlowDragon]

Cheers slowdragon. T3 isn't really the problem for me. I've been sourcing it from the same place for years with no problem. I know you've got to jump through hoops for t3 prescription but I thought some doctors will happily prescribe the t4/t3 combo drug in the UK? I can't remember the name of it...

[helvella Administrator]

HU have said that they are trying to see what can be done.