Totally fed up

[Brendag23]

Been treated for under active thyroid for 9 years and am no better. On thyroxine and had a 9 month trial on liathyronine too. Would like to try armour thyroid but endo will not give a prescription. Says if I can get it without prescription he will monitor me. No idea where I could buy so not much help! He still wants blood testing every month in case they reach danger levels, but as he's said theres nothing more he can do is he planning to shoot me in that case? . OK, weak joke there. I feel dreadful with more symptoms seemingly every day

[greygoose]

Change the title of your post to mention NDT - like 'Looking for NDT' or something. That will attract people who can give you an answer. But, it will have to be by PM. They cannot mention names of suppliers on the forum.

But, how much levo and T3 have you been taking? Nothing will help if you don't take enough of it. Have you had your vit D, vit B12, folate and ferritin tested? These all need to be optimal for your body to be able to use thyroid hormones. And it is absolutely essential that they are optimal before trying NDT. So, best to look into that, first.

[Brendag23 in reply to greygoose]

I don'the think there's anything that hasn't been tested. Sometimes more than once. Was on 150mcg thyroxine for years then managed to talk endo into a trial of liathyronine for 9 months. For that 9 months he lowered the thyroxine to 125. He said I'didn't get a 'buzz'. I didn't. After that he said he could do no more. Said if I got NOT without prescrption he would monitor me

[greygoose in reply to Brendag23]

I don't think many people do get a 'buzz' out of T3. I certainly never have.

But I can't pass any more comments without see all the labs. Have you posted them somewhere?

[Brendag23 in reply to greygoose]

No I haven't posted labs anywhere because I was only told they were fine. Not actually given results. I've had bloods done once since thyroxine was stopped. I'll try phoning his secretary to see if she can tell me results then I'll post here. I do take vit D high strength , also vitabiotics Well Woman Max which contains everything bar the kitchen sink ! Have been on those ones about 2 months. Have tried other multi vitamins over the years but find these the best. Of course I've had to find everything out for myself. Usually Internet. It's mind boggling isn't it ? I'll get back here in the week. Thanks for your help.

Regards Brenda

[greygoose in reply to Brendag23]

Never, ever just accept your doctor's word for everything being 'fine'. All he means is, it's in range, and where hypo is concerned, that's not good enough. Do not ring the secretary and ask her to tell you the results, ask for a print-out, and say you'll pick it up at her convenience. Results give over the phone often contain mistakes, and you absolutely have to have the ranges, too. And, if you've been tested for everything, that's a lot of results to read out!

[Brendag23 in reply to greygoose]

Thanks for that! Secretary would have to post results to me though. Endo is based at a hospital some distance away . I have advanced arthritis, don't drive and bus is out of question because of this. I've been 'lucky' enough to see endo in his clinic at my local hospital over the years. If I believed in 'the range' I'd have given up long ago. There's no such thing. You realise that , don't you, when the symptoms don't go away?! I'll ring up Tuesday with request. Thanks again

[greygoose in reply to Brendag23]

You may not 'believe' in the ranges, but they are necessary. Yes, they are too wide, and the problem is that doctors do not understand how to read them. But, without the ranges, it is impossible to interpret the results. The results on their own are meaningless, and ranges vary from lab to lab. Therefore, we need the range used by the lab where your blood was analysed in order to interpret your results. It's not the blood tests at fault, it's the doctors using them.

Hopefully, the secretary will agree to post them, or she could even email them, but you do have a legal right to have a copy under the 1998 Data Protection Act.

[Brendag23 in reply to greygoose]

Thanks again. I appreciate these ranges are necessary. I worded that wrong. I've been on website earlier today and filled in more details as to my story regarding thyroid. Over time I've read so much about the thyroid condition ( my eldest daughter has been helpful here !) I've got a file on it courtesy of her. She attended some apps with me . You know, 2 heads are better than one especially if one of them has thyroid problems! I used to have a great memory but no longer.

Someone else has been in touch regarding where to buy NDT. I really feel I've gone as far as I can with thyroxine. I need to feel better and I haven't for the 11 years since it started. ( first 2 years hearing my doctor tell me there was nothing medical that could make me gain weight but I persisted!)

I'm guessing perhaps thyroxine has worked for you . If so I'm pleased for you.

More news when I have it

Regards

[greygoose in reply to Brendag23]

Oh, no! Absolutely not! Thyroxine was horrible for me, and I put on a lot of weight with it, too! But, I put on even more with NDT! And I have no idea why. With all that I've learnt in the past 18, nothing explains why. Because, looking through my old results, I was converting perfectly well, and I was supplementing all the right things, and my adrenals were treated. Nothing accounts for the way I felt on levo and NDT. Eventually, I went on to T3 only, for several years, and have just recently dared to add in a tiny amount of T4. And, so far so good. No miracles, but I'm still alive and kicking! lol

Having said that, it's always best to start with basics. You don't get on with levo. There might be a very simple explanation for that. And, if you can get levo to work for you, that's the simplest way of going forward. But your doctor isn't going to do it for you, that's for sure! That's why I said to post your results, so that we can see what he's tested, and if there is any evidence of something obviously going wrong. I don't believe in jumping the gun and trying to take short-cuts, because it so often backfires on us!

Four possible explanations why levo isn't working for you :

1) you're under-medicated - that is far more frequent than you might think!

2) you aren't converting well - a lot of people don't, despite what doctors think.

3) you have nutritional deficiencies - this happens all the time because low thyroid hormone causes low stomach acid, so digestion and absorption of nutrients is difficult - something else that doctors know nothing about.

4) low/high cortisol - most GPs don't even know where the adrenals are, let alone what they do! So you're completely on your own with that one! Well, not completely, because we're here!

But, we won't know any of that unless the right tests are done. I wasn't, in any way, suggesting that if you're in range there's nothing wrong with you - god forbid! - but I'm not medically trained, so I don't see things in the same light! I see things from a difficult patient's point of view, because that's what I am.

[Brendag23 in reply to greygoose]

Thanks yet again. Never thought to say that I thought I wasn't converting (I read that about that possibility myself) So endo investigated & it turned out my body isn't absorbing the hormone .Conversion was fine. Maybe as I've only got half a thyroid gland. That's why I pestered for liathyronine as I'd read that might help. As I've said already it didn't work. I've got other health problems too. Diagnosed epileptic at 20 though no fits for many years (thank goodness). Got degenerative disc disease in lower back. On top of that hay fever & asthma. Though I'm thinking those last 2 are because of thyroid problem (as well as the advanced arthritis!) None of the family past or present have stuff like that .Though my son does have asthma but because of a medication he was given years ago Used to have a great family doctor who understood as she had thyroid condition herself. But she retired. So you see I'm falling to bits & feel so bad & in a hurry to get better. lol

[greygoose]

That doesn't make any sense. If you can't absorb it, how can you convert it? And, if you can't absorb levo, you wouldn't be able to absorb T3, either, would you. So, what did he do about your absorption problems?

And, if you can't absorb levo, you won't be absorbing nutrients, either, and that will have a huge effect. You really cannot take NDT if you have nutritional deficiencies, it really wouldn't work. You see why we need to see labs to sort all that out?

[Brendag23 in reply to greygoose]

It made perfect sense to me. The T4 of thyroxine was going in & being converted to T3 by my body but the T3 was not being absorbed by my body. Nutrients are not T3 of course & I've never had a problem with them. Never had a problem with any kind of medication either. Its just man made Thyroxine giving me a problem. That's why I believe that the natural hormone would perhaps stand a better chance of absorption. I've always been careful of medicines that don't mix Also foods that interfere in one way or another. And, of course, time of day to take

[greygoose in reply to Brendag23]

OK, you mean at a cellular level. Best to be precise, because I thought you meant at gut level. OK, well, you'll have to try it and see, then.

[Marz]

As you have arthritis I am wondering if you have Hashimotos ? Were your anti-bodies tested when you were diagnosed ? Maybe giving up gluten would help you to reduce inflammation - after all any condition ending in 'itis' means inflammation

[Brendag23]

My daughter might remember better than me. My memory isn't great with all this for so long. I do seem to remember the endo saying it was autoimmune hypothyroid though. Thanks for the info on gluten. I didn'the realise it had an effect. Guess anything is worth a try ☺

[Marz in reply to Brendag23]

You will read about Hashimotos and being gluten Free here on the Forum everyday. You have to be 100% GF for the anti-bodies to lower and for the gut to heal. The gut can become permeable and gluten causes the immune system to go on red alert and create anti-bodies. Also gluten molecules can travel to other organs too and cause inflammation - including the brain !

Obtaining your results with ranges - that are legally yours - is the key to finding wellness. You need to monitor your own health and also check what has been missed by lazy doctors !

If you need advice about going Gluten Free then do ask or check out websites

[Brendag23 in reply to Marz]

This is all so complex isn't it ? I'm thinking a science degree is needed to understand fully! Isn't this what the docs and endos go to university to learn about for us 'lesser' mortals and get us better!? I was only a florist in my working life 😊

[Marz in reply to Brendag23]

I don't think many of us have science degrees and am not sure what it is you find difficult. Take things a step at a time and keep reading. We all started the journey once upon a time and gained experience as we went along. Yes Docs do go to Med School but ate not trained to fix Chronic conditions - only those that need drugs to make money. Western Medicine is now a business model and not designed to make us well.