What Now ?

[foxyeyes]

Hi all posted a couple of weeks ago about lump in my throat was recommended I go to GP so went and would you believe it ? it went the day I went to see her it keeps coming and going now she could not feel anything she asked how I was getting on with ndt and said I should have a blood test but I said you don't do full thyroid test she said she was sorry but there was nothing she could do about it she was very sad at how NHS was treating patients and sorry that I had to self treat she asked me to take next blood results and she would see if she could interpret them had a long talk with her she was very sympathetic but at the end of the day there was nothing she could do so got to save for private Endo now as she said she didn't know of one who would prescribe ndt .

[shaws Administrator]

It's unfortunate that doctors will no longer prescribe NDT. I think they've been threatened that they'll lose their licence if the prescribe other than levothyroxine.

If GP does blood tests the results will not be the same as taking levothyroxine alone as it also contains T3.

The following are are three chapters which may be helpful in getting better:-

nebula.wsimg.com/540ba6bc6c...

An excerpt from the following link:

If taking thyroid hormone is part of your rehab, you should

measure the severity of your symptoms at intervals long enough to

tell you the benefits of a particular dose. If you use desiccated thyroid

or a synthetic T4/T3 product, monitoring every two weeks will

be often enough. Two week intervals are enough because improvements

in your symptoms after an increase of your dose can take up

to two weeks.

nebula.wsimg.com/b822d36efe...

nebula.wsimg.com/e0c9c9ed95...

[foxyeyes in reply to shaws]

Thanks a lot Shaws will have a look at links

[bmwcatherine in reply to shaws]

My doctor says 6 weeks.

[shaws Administrator in reply to bmwcatherine]

If you are taking levothyroxine, yes it is increased every six weeks. If someone is taking NDT it can be increased by a very small dose every two weeks. I shall try to find an excerpt/explanation but at present I am unable to find the link.

[bmwcatherine in reply to shaws]

I'm sorry but I don't understand the 3letter acronym NDT. I've been reading lots from this site and there are lots to know/learn. Thanks for your patience

[helvella Administrator Thyroid UK in reply to bmwcatherine]

You might find my abbreviations and acronyms document of use. People do use rather a lot of them!

dl.dropboxusercontent.com/u...

[LAHs]

There are some NDTs you can get without a prescription. I am not an expert on what they all are but Throid S is one of them, WP is another and I believe one is called Erfa. I am sure someone else will post a complete list. Someone posted just the other day that there is a site which asked for a prescription - but sells it to you anyway even if you do not have one. If I can find it again I will repost it here.

A second solution is to go T3 only and maybe introduce a little T4 when you stabilize on the T3. It's the T3 in NDT which is the "life saver". You can get T3 from Europe w/o a script - you get it over the Internet. Spend a few hours on Google and contact the manufacturers directly. I found Activis to be very sympathetic, maybe they can give you names of docs who will prescribe NDT - you might have to get one from the US, but maybe they can give you contacts in Europe.

Your doctor may be of some help, at least she is aware of what she is supposed to be doing, maybe she can ask her colleagues or ask a question on a doctor's blog as to how someone can get an NDT script.

[bluebug in reply to LAHs]

You need to PM the OP with any links of sources. Though only bother if they have filled in their bio. You can't post links on a public forum as it's against the rules.

[LAHs in reply to bluebug]

Hi bb, yes I know, that's why I didn't publicly name any of the less well known sources nor give out their links.

[shaws Administrator in reply to LAHs]

Never source any thyroid hormones without knowing if it was 'genuine'. There must be many copy-cats hoping to make money and it may not be genuine at all.

I don't think any doctor in the UK will prescribe NDT any longer, as it was the only one available up to a few years ago when the BTA put a ban on it being prescribed.

[LAHs in reply to shaws]

True. I do not know of any sources of NDT other than the one I take (I think I wrote that). Whenever I read that NDT might be pulled from the market it sends shivers down my spine. Having been the "Brand Lousy" Levo route I think I would have to go the T3 only route although I think I would try the diet supplement route first and keep a very close eye on my hormone levels. For me, Levo would very quickly prevent me from walking properly and then the whole spectrum of hypo symptoms would set in. I did that experiment three years ago, I named it "doing as I was told" or, in other words, allowing myself to be medicated to TSH approach.

Yes, of course, do a lot of research on any pill you put inside yourself, make sure it is genuine.

[shaws Administrator in reply to LAHs]

It is a pity they don't prescribe NDT in the UK any more. I believe it can still be prescribed if we've a private prescription but that means extra monies as they'd have to find a private doctor who'd prescribe. If they did find NDT suitable they'd find that there wouldn't be 'extras' to be prescribed for the remaining symptoms and save lots of money for the NHS.

The most important thing is that the patient is well and feels normal health and is able to have a good lifestyle like they used to.

I had a private prescription when I was first trying to find what hormone, other than levo, would help me and there are pharmacies in the UK that stock it.

[foxyeyes in reply to shaws]

Hi shaws have looked at links found them very interesting am going to have another look later as there was a lot of info to take in but I thought keeping a record in graph form was very good going to give it a go (when I get rid of this flu)

[LAHs in reply to foxyeyes]

For what this is worth, I have found that when my FT3 is low, my immune system is minimal. I had the flu over Christmas and I put it down to an experiment I was doing where I lowered my NDT dose just to check something out. I rarely get colds and flus and the only two times I have been ill out of the last four years was when my T3 was low (the 1st time when I did what the doc told me to do and the 2nd time (xmas) was a self inflicted wound - as they say a lot in the US these days)

[bmwcatherine]

Thanks

[shaws Administrator in reply to bmwcatherine]

It was the original thyroid hormone replacement first used in 1892.

A little bit of history and an extract:

In Britain, at a meeting of the Northumberland and Durham Medical Society on 12 February 1891, George Murray, 3 years qualified, having taken advice from Horsley, who had been one of his undergraduate teachers (Paget 1919), presented his idea to treat a case of myxoedema with an extract of sheep’s thyroid given subcutaneously (Murray 1891b). He, too, Medvei (1993) tells us, was ridiculed. While the typed minutes of the meeting contain no trace of ridicule; indeed, to the contrary, what could be interpreted as cautious support, Medvei has sourced a reliable account of one senior member of the Society saying: ‘It would be just as sensible to treat a case of locomotor ataxia with an emulsion of spinal cord’. The medical college at Newcastle refused to help.

jameslindlibrary.org/articl...

[LAHs]

Yes. The crux of Foxyeyes problem was that she couldn't get NDT anymore. I was suggesting the next best thing, T3 only.

Since writing one of my posts above I have found other alternatives if you cannot get NDT via a prescription. The following NDTs you can get without a prescription:

Nature-throid

Westthroid

Canada's Erfa

I said that I would post them if I found that list, so there it is. I sympathize with your husband, I am in the same boat. If my NDT was cut off, I would go for one of the above but I would try T3 only first.

[helvella Administrator Thyroid UK in reply to LAHs]

All the above, and Acella NP Thyroid, and RLC's WP Thyroid and Armour Thyroid, are officially prescription-only medicines in the UK.

Although it may be possible to source them without a prescription, it is not always easy to find a reliable supplier.

[LAHs in reply to helvella]

Wow, I didn't know that, they are classified as diet supplements here. I don't know about Canada.

[helvella Administrator Thyroid UK in reply to LAHs]

Well both Armour Thyroid and, for one example, NP Thyroid appear to be classed as:

Category: HUMAN PRESCRIPTION DRUG LABEL

DEA Schedule: None

Marketing Status: unapproved drug other

dailymed.nlm.nih.gov/dailym...

We think of products such as Nutri-Meds thyroid and similar as dietary supplements. As soon as there is a declared thyroid hormone content, it would be classed as prescription-only in the UK.

[foxyeyes in reply to LAHs]

Morning LAHs not been online for a couple of days had a nasty bout of flu I am sorry if I gave the impression I couldn't get NDT I take WP Thyroid have no trouble getting it but GP would have liked me to be with a doctor who understood more about NDT as she said getting levels right was difficult and she knew nothing about it and she thought she may not be able to interpret results but I post them on here anyway and get replies i do thank you for your reply and again sorry for giving wrong impression to everyone

[LAHs in reply to foxyeyes]

Oh, thank goodness you get WP Thyroid. Tell your GP "getting levels right" is still the same but first getting you feeling right supersedes the levels "they" would like.