Help!

[Bellerin]

Hello, just looking for any advice, I am currently on 100 pure levo, but my GP thinks I am over medicated due to my TSH tests, and my T4 & T3 being in mid-range, but I still have all the Hypo symptoms & still putting on weight. (I do not have my latest results). I have ordered some NDT (WP Throid) but I am totally unsure & scared about self-medicating and have no ideas about doses, or increasing etc.

I did try adding some T3 earlier this year (May) for about a month, but I think I increased it too quickly, and my body didn't tolerate it well, so I came off it. Also my Endo at the time, said he wasn't prepared to treat me if I was taking T3, so this is another reason why I stopped it.

I have just been getting worse for the year that I have been on Levo, and that's why I wan to try the NDT. I am actually anorexic, and have been for over 15 years, so putting about 4 stone in weight on over the past 18 months, has literally been hell on earth for me, so I am just hoping that something will work.

People mention about cortisol & adrenal issues when trying NDT, I did have my cortisol tested in June and it was high for most of the day, and I don't know how to get it down, my GP doesn't seem to know how to tackle it, so I'm scared that the NDT wont work, but don't know how to get the cortisol down.

How can you have your adrenals tested? I've not heard of this, so I am unsure of how mine are. Sorry for all the questions, but I am extremely desperate. My GP thinks that an anti-depressant would help, as I've had suicidal thoughts, or maybe an anti-anxiety, but I am most upset about my weight gain, and I think that medication will just put more weight on. I also have a Gluten, Dairy & Lactose allergy, so that is causing me to have even more problems with digestions and stomach pain. I just can't remember the last time I felt well, or even happy. I am actually a sports-nut (my team is arsenal, hence my 'Bellerin' name) but even watching sport is doing nothing for me anymore, I just feel like there's nothing left, I am never going to lose weight which due to my illness, is the most important thing in the world to me.

Any help or advice to always immensely appreciated.

[greygoose]

Well, it's not possible to say much without seeing your results - have you asked for copies? But, the TSH is irrelevant once you are on thyroid hormone replacement, unless it goes high. It doesn't matter how low it goes. And probably the T3 would have done you much more good than and anti-depressant or a pill for anxiety, as those are symptoms of under-medication.

Leaving the endo aside, if you thought you had increased too quickly, all you had to do was lower the dose.

If you've tested your cortisol, then you have tested your adrenals! It's the adrenals that produce cortisol. And, there was probably a DHEA result in there, somewhere, wasn't there?

High cortisol is much more difficult to deal with than low cortisol, and I don't know anyone who has the answer to that question.

If you are contemplating NDT, then you need comprehensive tests. You need :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin.

You need the Frees done at the same time so that you know if you are converting well enough. You need to know if you have Hashi's, because that complicates things. You need to have your nutrients optimal or NDT will not work. So, I would advise you to get them all done privately - I doubt your doctor would do them all - and post the results here. Then people will be able to help you, rather than just guessing.

[Bellerin in reply to greygoose]

Thank you, you know you are my oracle ;).

Where is the best place to have those tests done? Is there somewhere I can have all of them done at the same time? Is it worth getting a RT3 test done? If so, where? I have heard about this be are unsure of what RT3 is, and what is pooling? I've tried googling it, but getting a bit bogged down with all the info Not much is going in at the moment.

[greygoose in reply to Bellerin]

Well, I see that shaws has given you the info about testing.

Don't worry about rT3 at the moment. I don't think you have enough T4 to convert to rT3!

Pooling is when the T3 mounts up in the blood but cannot access the cells. But, I don't think you have enough T3 to pool!

Doctors dosing by TSH only is the best way to keep the patient sick! And I think that that is why Big Pharma has decreed that it is that that they should learn in med school. Because they are making a fortune out of keeping us sick. I really don't know what can be done about it, except taking charge of our own health and self-treating. You won't get very far with a doctor who has that sort of mentality. But, you can tell your doctor that you refuse to lower your dose. He who says nothing consents.

[shaws Administrator]

Try not to worry too much at present until you have had a few replies from members.

Suicidal thoughts aren't uncommon when the dose is too low or you feel so unwell. We take levothyroxine and some of us feel worse than before being diagnosed.

The doctors should not adjust our hormones according to our TSH but that's the stupid guidelines set out by some who are supposed to be intelligent enough to know all about a dysfunction of the thyroid gland plus its awful symptoms if under-treated/untreated. Also too low a dose given to patients in order to keep them 'in range' and some doctors mistakenly take this to mean 'anywhere' in the range when it should be 1 or lower.

Natural Dessicated Thyroid Hormones have been in use since 1892 safely and since that time other conditions were unknown (so I believe) such as Fibro and CFS. I believe that's due to the TSH being given priority before being diagnosed.

One doctor believed Adrenals and cortisol should be treated first. Another said that once on the optimum dose both fixed themselves.

Vitamin C is good at reducing cortisol:-

drdavidwilliams.com/how-to-...

100mcg of levothyroxine is equal to around 1 grain of NDT (some grains are also stated as 60 or 65mg).

You can switch straight over from 100mcg of levo to 1 grain NDT. If you feel overstimulated, drop to 3/4 tablet.

If you feel o.k. you can increase every 2 weeks. I'd do so my 1/4 grain until you feel well with relief of symptoms.

If you take your temp/pulse several times a day before you begin so that you have an idea what they are and they can be a guide when beginning a new routine.

Levo is synthetic and NDT is made from animal thyroid gland so is more natural to our bodies, I believe.

It's best to have a blood test before you begin so you have an idea what they are before beginning a new regime.

[Bellerin in reply to shaws]

Thank you for all your great information. Do you know where to get all of those tests done?

[shaws Administrator in reply to Bellerin]

I shall give you a list of recommended labs from our website, Thyroiduk.org.uk and you get a small discount if you quote TUK's code.

thyroiduk.org.uk/tuk/testin...

Remember to take them as early as possible, fasting too although you can drink water. Also don't take levo for approx 24 hours before your test.

[Angel_of_the_North]

You are not overmedicated unless your FT3 is over range. Both Ft4 and Ft3 need to be 75% of the way up the range, not mid range - so if anything you are undermedicated. Email or PM Louise Roberts to ask for a copy of the Pulse article by Dr Toft explaining about low TSH and dosage.

[Bellerin in reply to Angel_of_the_North]

Thank you very much, I just feel that I am arguing with all the doctors at the moment! My GP just seems to look at the tsh results and say I need to take my levo down, yet still having all the symptoms! And she wonders why I'm stressed, I'm just fed up with trying to convince people that I feel so awful

Thanks again.

[Angel_of_the_North in reply to Bellerin]

Many doctors try to treat on TSH only, which will keep you unwell. If necessary, try changing your doctor (perhaps to to one of those on the TUK list).