Would NDT help with secondary/central hypo?

[Jamima]

I’ve got details of someone who can supply NDT. I only have a basic understanding of this ie it contains T4 and T3. I think I may have secondary hypo and my research suggests that treatment would be with Levo only.

Can anyone help with this?

[greygoose]

The treatment for Seconday Hypo is exactly the same as for hypo due to any other cause - i.e. thyroid hormone replacement of some kind: levo, T4+T3, NDT.

The majority of doctors think that the best treatment for hypothyroidism is levo. But we, the patients, know different. Levo only is fine for some people, but not for everyone. Some people, for various reasons, need T3 - either with levo or by itself, or in NDT. Central Hypo is no exception.

Levo (T4 only) is basically a storage hormone, that doesn't do much until it is converted into the active thyroid hormone, T3. If you're a good converter, all is well, but not everybody is. And you can be a poor converter whatever the cause of your hypothyroidism.

So, the answer to your question is: yes. If you feel good on NDT - and not everybody does - it would help with Secondary Hypo. It wouldn't cure it, but then nothing would. All it would do is replace the thyroid hormone that your thyroid can no-longer make due to lack of TSH, due to a pituitary problem.

So, you've decided to self-treat? Well, if you need any advice on how to do that, you'll find plenty on here. But, the problem with Secondary Hypo is that it implies a problem with the pituitary - which I'm sure you know - and the pituitary produces a lot of hormones which could all be low, too. So, ideally, they would also be tested, and supplemented where necessary. Otherwise, you're not likely to get much benefit from thyroid hormone replacement. So, you do need to continue trying to get a diagnosis, and that will be even more difficult if you've started self-treating, because that will bring your thyroid hormone levels up. If you see what I mean.

[Jamima in reply to greygoose]

Thank you Greygoose. I understand what you’re saying about both the treatment and the condition. I also understand that any self medicating would skew test results, however, I just can’t keep living like this. My nhs endo is adamant there’s nothing wrong with me and I recently contacted a functional medicine doc who suggested that DHEA would be a good place to start. I know DHEA makes negligible difference as I’ve already tried it.

I’m going in circles trying to find a way through and I have big decisions to make regarding my business and selling my home next year, I just waft through each day unable to focus and so I’ve nothing to lose by giving the NDT a shot.

Would I be better to start with levo or NDT?

[greygoose in reply to Jamima]

Did you discuss Central/Secondary Hypo with the NHS endo? Not all of them know anything about it, it's true, but if you insist enough, surely they should take that seriously, no?

Why on earth would you start with DHEA? You start with thorough testing, to find out exactly what's going on. Honestly, the more I read about functional medicine, the less I like it!

No-one can possibly tell you whether you would be better on levo or NDT. It's a very personal thing, because we're all different. The only thing is, levo is much cheaper and easier to come by, but whether it would be right for you, I could not say. We have to find that out by trial and error.

[Jamima in reply to greygoose]

Thank you greygoose, I didn’t discuss it with my endo as I assumed that getting to consultant level in any particular field of medicine was an indication of broad knowledge and experience therein. I’m going to email him today and ask for further tests, although I don’t hold out much hope. I came across a paper by Dr Anthony Toft yesterday and emailed him. He is retired and can’t offer advice but recommended his successor. He also recommended that I don’t self medicate until I’ve been fully evaluated, I’m going to take his advice re. self medicating.

Thank you for your help.

[greygoose in reply to Jamima]

I'm afraid that's not an assumption you can make. Very, very few doctors know anything much about thyroid, not even endos. I don't suppose he called himself a 'thyroid specialist', did he? The majority of endos are diabetes specialists who think that thyroid is no big deal. They're just not interested. Central Hypo is considered to be rare, therefore they don't learn about it in med school, and it is rarely tested for, so the majority of doctors - even endos have never come across a case, or even heard of it. They just look at your TSH and if that's ok, you must be ok, to their mind. That's all they know about, the TSH - and most of what they think they know is false.

This will tell you more about the tests you need:

pituitary.org.uk/informatio...

[Jamima in reply to greygoose]

Thank you. I've sent an email to the endo department although I expect it will be some time before I receive a reply.

[greygoose in reply to Jamima]

You're welcome. Good luck! Let us know how you get on.

[Jamima in reply to greygoose]

Yes I will, thank you.

[radd]

Jamima

The hypothalamus secretes TRH to signal the pituitary to release TSH encouraging more thyroid hormones. If there is a pituitary or hypothalamus problem TSH secretion may become de-normalised and if low, medicating Levo/NDT is the usual treatment for replacing thyroid hormones but doesn’t directly address the problem.

The pituitary produces a whole host of hormones that regulate the activity of other glands & organs, and a problem could be causing other hormone deficiencies-elevations. An example would be the adrenals produce hormones in response from pituitary signals and your previous posts indicating low cortisol & DHEA would be negatively effecting good thyroid function.

Have you had posterior pituitary hormones tested such as antidiuretic hormone tested? I know you are post menopausal now but did you ever have irregularities in hormones such as LH, FSH & prolactin? Prolactin usually correlates with TSH.

Any problem should be investigated preferably before self-medicating thyroid hormone which will alter base lines meaning you may risk never receiving medical help.

[Jamima in reply to radd]

Thank you Radd. I’m going to email my nhs endo today and ask for further tests. What should I ask for in terms of pituitary tests? Do I just go over, yet again, all my symptoms and tell him I think it’s the pituitary hormones? I’m not a medic, this seems incredible.

[Partner20 in reply to Jamima]

I would not request tests, or say anything akin to "I think", as this is highly likely to cause affront to many consultants. Simply list symptoms, make reference to current test results, and put the ball in their court by asking what they think should be the next step. By all means ask "Could it be?", and "Do you think that testing for X,Y,Z, might be useful?", but leave out any inference that you are the one directing this! Others may disagree, but getting your consultant onside is what is important. Hope you get some satisfactory answers.

[Hidden]

You say you think you may have secondary hypoT, so i assume you have not been diagnosed by a doctor? Do you have any lab results to post here? If the problem is the pituitary gland and not the thyroid gland itself, your TSH will be low along with low FT4 levels. You shouldn´t self-treat with any kind of thyroid hormone unless you know for sure you have hypothyroidism, and it is not cleear from your post that you have been diagnosed with it. But, as greygoose points out, if your pituitary gland is the problem, other hormones may be low as well as the pituitary gland regulates all endocrine glands.

[greygoose in reply to Hidden]

There are lab results in the OP's previous posts.

[Hidden in reply to greygoose]

Thanks!

[Hidden]

I see that you have written in previous posts that you tried Metavive but that it caused aching. In another post about three months old you say that your TSH was just above 1, and your FT4 around 13 (ref 12-22) so low in range, but that your doctor does not think you need thyroid hormone. Which makes me wonder why you think you do? What is your diagnosis?

I am not that familiar with central hypo and don´t know where doctors want the TSH to be to make the diagnosis. But, if you were healthy, your FTs would be around midrange so something is causing your low FT4.

It seems you have tried quite a few supplements for thyroid dysfunction and adrenal fatigue.

[Jamima in reply to Hidden]

Thank you purple cat - there is no diagnosis, that’s the problem. No diagnosis but ongoing symptoms similar to hypo. My last 4 point cortisol and dhea were also low across the board. My endo tells me that hypotension on standing (my reading dropped significantly), is normal, and having to rest after a 40 min dog walk is normal, and rushes of what appear to be adrenaline accompanied by low sugar at the same time every day, is normal, and extreme brain fog until exactly 2pm, when something ‘chemical’ kicks in, is normal, and afternoon slumps until the next rush of whatever this is at 5pm, is normal, and heart thumping rushes at 11pm, is normal. He explained my low ft4 as normal low end of the range and didn’t appear to link it to my other symptoms. Maybe I am normal, I’m beginning to wonder. But I know none of this was ‘normal’ for me 2 years ago when I was able to run 2 businesses, care for a bed bound partner post surgery, run a home and 2 x 40 min dog walks a day. That’s what I’m clinging to.

[Hidden]

From your description, it would seem your health has deteriorated and there must be a reason for that.I don´t think that your FT4 levels are normal. A person with a healthy thyroid gland has midrange FT3 and FT4 levels.

With FT4 that low, it is possible that your FT3 levels are low as well. Do you have way of having your FT3 levels tested (privately if needed)?

If you do need thyroid hormone replacement, it´s possible a prescription-strength NDT drug such as Thyroid-S would be better for you than a glandular like Metavive.

You should not have to accept feeling like this.

One problem with adrenal fatigue is that most conventional doctors don´t recognise it as a medical condition.

Have you considered giving short-term hydrocortisone a try?

[Jamima in reply to Hidden]

Thank you PurpleCat71 - why would NDT be better than a glandular? My latest ft3 is 4.3 (3.1-6.8). My endo just snorted when I mentioned adrenal fatigue but when I first ‘crashed’ I had pretty classic symptoms- lower back pain, nausea, extreme fatigue and weakness, no appetite, I begged my GP for some HC but she refused and wouldn’t accept the results of my cortisol test. And so the searching began.

[helvella Administrator Thyroid UK in reply to Jamima]

Thank you PurpleCat71 - why would NDT be better than a glandular?

Because we have no knowledge as to how much, if any, thyroid hormone is in any glandular product.

Some companies appear to be proud that they don't even measure how much there is. Not seeming to know, or care, that if they don't know, they cannot offer consistency. Neither tablet to tablet, nor batch to batch and year to year.

Even the companies which make the better products have had issues with potency over the years. Both super- and sub-potency have been reported.

[Jamima in reply to helvella]

Thank you helvelka. That might explain why I felt so ramped up on just half a dose. It certainly gave me energy, not necessarily clarity, but it just didn’t feel like a good fit.

[Hidden in reply to Jamima]

NDT contains standaridsed amounts of T3 and T4 and is used to manage hypothyroidism. Glandulars are supplements with no known (if any) hormone content. They are not intended to manage disease.Thyroid-S is available without a prescription. It contains 38 mcg of T4 and 9 mcg of T3 per grain (60 mg). It´s ordered on the internet. Prescription NDT can be difficult to get a prescription for in the UK, and it is also very expensive. Some use synthetic T3 and T4 instead. Most doctors will only prescribe levothyroxine (T4).

I will send you info on how to order HC via a personal message (check under "Chat").

[Jamima in reply to Hidden]

Thank you.