Advice for new, self-administered regimen of hy... - Thyroid UK

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Advice for new, self-administered regimen of hydrocortisone and NDT

Emstar1892 profile image
12 Replies

Hi again everyone. Thank you for all of your advice in my previous posts.

To summarize my labs:

I have low free thyroid values (ft3 bottom of range, ft4 just below range)

I have a 'normal' (1.95) tsh.

I have had a TRH stimulation test (with a slight delay in response, showing possible slight hypothalamus/pituitary) issue.

I tested salivary cortisol 6 months ago and in chronological order got mid-range, bottom of range, high, high.

I have high b12 and folate

To summarize other symptoms:

My heart rate is very low (40 upon waking at the moment)

My blood pressure is extremely low and I see stars even when walking around

I have intermittent tinnitus

I am shedding hair all day like crazy

My face is swollen and with thick, pale skin

My memory is terrible and worsening by the day

My energy is non-existent

I have mild insomnia that prevents me falling asleep for a couple of hours

I have developed terrible anxiety in the last few weeks

When I tried to quit smoking 3 weeks ago I crashed so badly that I had to be driven home and couldn't see properly

Now, smoking again, I have a panic attack after every cigarette and feel faint.

I can't recover from exercise

I have swollen lymph nodes

To summarize my attempted treatments:

I tried half a grain of NDT for a month, and became completely spaced out, disorientated, and my heart pounded in my chest and ears all night long. I also had terrible insomnia.

I have decided to purcahse hydrocortisone, and have some on its way to me. I'm hoping that by just a small dosage in the AM will allow me to tolerate the NDT.

What do you all think? Can you help me at all?

Thank you so much,

Emma

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Clutter profile image
Clutter

Emstar1892,

Hasn't your endo prescribed Levothyroxine to raise your FT4? Bradycardia (slow heart rate) and your other symptoms are very common in undiagnosed and under treated hypothyroidism.

Emstar1892 profile image
Emstar1892 in reply toClutter

Hey Clutter,

No he hasn't.

First, back in March, he told me to go on a low-carb diet (which I actually did years ago with success, but when I tried it in March, I felt like I was dying).

Second, he told me I probably have 'POTS' syndrome, and referred me to a private cardiologist. But I don't want to go down that route, as it's expensive and, in my mind at least, pointless, as if I get a positive diagnosis of this 'syndrome' the only treatment is cortisol and salt.

Third, last month, he said that it looks like my symptoms are being caused by an underlying virus, and that supplementing me thyroid would 'cover it up.' He also said that my TSH isn't worrying enough to treat. He concluded that we should 'shelve' the 'thyroid idea,' and sent me on my way.

Clutter profile image
Clutter in reply toEmstar1892

Emstar1982,

He sounds like a total waste of space. If your FT4 is below range your FT3 is bound to be low or deficient too and it's this which causes hypo symptoms.

You can either ask your GP for a 3 month trial of Levothyroxine, ask for referral to another endo, or self medicate. If a trial of 50-75mcg Levothyroxine for 3 months doesn't improve symptoms it may be that symptoms are non-thyroidal.

_______________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Emstar1892 profile image
Emstar1892 in reply toClutter

Thanks Clutter. The problem is I can't tolerate thyroid, as I explained in my 'treatments' section. That's why I'm asking about hydrocortisone, as I intend to add this from next week, and am curious as to whether it's a good idea.

It's all been quite draining to be honest, he was highly recommended according to Stop The Thyroid Madness, and I've spent thousands of pounds already to be in exactly the same place.

My doctor doesn't believe in FT4 or FT3, nor do any of the doctors in clinics where I live. They also refuse to give me an NHS referral to an endo as there's "nothing wrong with me" except my 'healthy' low blood pressure and 'random' bradychardia. 'Normal' TSH is all they want to see.

Clutter profile image
Clutter in reply toEmstar1892

Emstar1982,

What other thyroid replacement have you tried, and what doses?

I can't see why HC will be of any help in raising low thyroid hormone.

Emstar1892 profile image
Emstar1892 in reply toClutter

Well according to the work of people like Broda Barnes and Jefferies, many patients cannot tolerate thyroid (or get "pooling") because they don't have enough cortisol to handle the dose. This is also explained a lot on Stop the Thyroid Madness. Cortisol doesn't raise free thyroid hormones, but it's required - adrenals that don't produce enough of it begin taxing the thyroid, so taking more thyroid just crashes the adrenals and cortisol further. That's what their reasoning seems to be anyway. I've also spoken with a few people for whom this is the case.

I tried Nature Throid, which, after a month, left me feeling like I was at death's door!

Clutter profile image
Clutter in reply toEmstar1892

Emstar,

There is also Levothyroxine, Liothyronine, and Levothyroxine+Liothyronine combination which may suit you better than NDT.

Emstar1892 profile image
Emstar1892 in reply toClutter

Thank you, Clutter.

Sorry to keep bothering you, I'm just interested - is it common for people to tolerate synthetics better than NDTs? I've never heard of that before! :)

Clutter profile image
Clutter in reply toEmstar1892

Emstar1892,

Some people need to try different brands of NDT to find one which suits, others don't tolerate NDT, just as others don't tolerate synthetics.

Sometimes the fillers in tablets don't suit people and liquid thyroxine may be the answer. I really don't know where one would get liquid thyroxine without a prescription though.

greygoose profile image
greygoose

How is your iron? You need good iron to tolerate NDT.

The HC is not a bad idea, provided you're sensible with it, and stick to the low dose in the morning, and aren't tempted to keep increasing the dose, and taking it later and later into the day. Never after 1.0 pm, is the rule! But, beware, it causes water retention. Can be severe. But, if you're on a really low dose, you might get away without that. :)

Emstar1892 profile image
Emstar1892 in reply togreygoose

Thanks grey goose. Is a low dose 5mg upon waking?

Nikkimar profile image
Nikkimar

How is this going for you? Have you made any progress? My symptoms and story are very similar to yours. Would love to hear how you're doing.

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