Going to give NDT a try

[patez]

Hi everyone.

Just an update to those of you who already know me on here.

As I had a fairly severe "allergic reaction" 2 days after starting levo, I have decided to give NDT a try.

Ordered Thyroid S.

I know that I have been advised on here that I do not have a thyroid problem, but I am very symptomatic of hypo, and my Free T3 and free T4 are both "low in range", which is not "normal"?

As I understand it (from lots of research), T3 should be above mid range for someone without a thyroid problem, and free T4 should be slightly above mid range for someone without a thyroid problem?

My ranges are FT3 of 43% of range, FT4 30% of range?

Latest test results in September 2018 were:

Free T3 2.62 pg/ml (range 1.40 - 4.18)

Free T4 11.39 pg/ml (range 8.90 -17.20)

TSH 1.55 mIU/L (range 0.30 - 4.5)

Central hypothyroidism?

All I know is that I am feeling very ill, and progressively getting worse!

Extreme tiredness, poor memory, loss of coordination, essential tremor, heat intolerance, anxiety and nervousness, shivering feelings, and a very weird sensation of "something crawling inside my legs"!

Oh, forgot to mention the worsening tinnitus!

Anyway! I am going to give the NDT a go!

1 grain daily for 2 weeks, and then increase 1/2 grain every 2 weeks.

Test again after 6 - 8 weeks?

Is that correct?

Thanks for any help/advice when starting NDT!

Patez

[fibrolinda]

please start on 1/4 grain, 1/2 at the most and increase by 1/4every two weeks until on 1 1/2 grains and hold on that for 6 weeks then test. I know that is low and slow but it really can save a lot of time in the long run. Have you got a blood pressure monitor and thermometer? If not get them and keep a log of your temp, heart rate and blood pressure daily. If heart rate goes to high, ie 90s plus, then reduce by 1/4 and hold.

[patez in reply to fibrolinda]

Hi.

Thanks for the advice.

The Thyroid S is 60 mg, so it will need to be cut into 1/4. Any idea if it splits nicely into 1/4 (using a pill cutter)?

The reason I said I was going to start on 1 grain is because that is the recommended starting dose on the STTM website, but having read your reply, and seeing how much the equivalent of 60 mg compared to what levo is, 1 grain would be a very high starting dose!

Yes I do have a good quality blood pressure monitor and thermometer. I will keep a close eye on those.

I haven't monitored by temps, but I will start to do that now (which will give me a reference before I start taking the NDT).

Thanks again.

Patez

[fibrolinda in reply to patez]

I bought a pill cutter from Amazon and it's pretty good. Some quarters end up bigger some smaller though no matter how hard I try. I've read some use scalpels and or razor blades but I wouldn't dare.

I do absolutely understand the desperation you feel which has led you to self medication.. Me three and a half years ago, But please take it slow and monitor yourself, a lot. Oh and ditch the folic acid and use methylfolate 'sp' . But get tested, if you haven't been you may not need it. Also as recommended get vit d and ferritin tested. Good luck

[patez in reply to fibrolinda]

Hi

Eek! A scalpel or razor blade? With my lack of coordination, that could be a disaster, LOL!

I take the folic acid to support the B12 injections (as recommended)? Methylfolate (nor any other type of folate) is not available here in Oman!

Whilst I understand that I should have my Vit levels tested, cost is a factor! I have to pay for everything privately! The thyroid function test alone cost me £75! It will probably cost me a fair bit to have vit d, folate, ferritin, iron tested, but I will enquire and get them done if the cost is not prohibitive.

Personally, I think my levels will all be ok though as I take Vit d supplements, folic acid, Vit C, B12 injections every other day, B complex (B1,B6,B12) and have just finished a course of strong iron supplements.

I will monitor myself very closely. BP, heart rate, temperature on a twice daily basis.

Thanks.

Patez

[greygoose]

No, not Central Hypo, your TSH is where one would expect it to be with those Frees. Which are not low. They are euthyroid. Of course, that doesn't mean that they are not going to get lower, and that you are going to become hypo. Symptoms can appear well in advance of blood test abnormalities. But, at the moment, they are not saying Central or any other kind of hypo.

I agree with fibrolinda, start on 1/4 grain, not a whole grain. That would be far too much for even someone extremely hypo as a start dose. The rules for any hormone are: start low and increase slowly.

[SlowDragon Administrator]

Low B12 is often linked to tinnitus

Have you had B12 and folate tested?

[patez in reply to SlowDragon]

Hi.

I self IM 1 ml B12 Hydroxocobalamin daily, and my last B12 was over 1200.

It has not made any difference to the tinnitus, which is getting worse (right ear only)!

I do not work in a noisy environment, or listen to loud music, so I am at a loss as to why I developed tinnitus 2 years ago!

No, I have not had folate tested, but I do take folic acid daily.

Thanks for your input though.

Patez

[ter1461]

Yes I’d have your b12 ferritin and folate tested. Tinnitus can be b12. B12 def And Thyroid often go hand in hand.

[Hidden]

Be careful. Start on lower dose as suggested. Be aware that by taking NDT your thyroid gland will slow down as it has nothing to do. Do not proceed if you don't very quickly start to feel better.

One way to test whether any improvement of health has been caused by NDT is simply to stop taking it and then see what happens. Remember things change very slowly with anything related to the thyroid gland.

[silverfox7]

Your bad reaction a couple of days after starting Levo is probably not because of the Levo but the fillers each contain which tend to differ slightly in different brands so I feel trying NDT is a knee jerk reaction. Personally I wouldn't advise anyone to start on NDT or adding T3 to T4 without getting stable of Levo first. You need to know whether you are converting properly which you can only do on Levo as you need to compare FT4 with FT3. When taking T3 in any form then resultsare read differently and only the FT3 result is accurate. It is essential that FT3 reading is obtained. I'm not trying to put you off but make you aware of the downsides and to look out for potential problems.

Some people don't do well on T3 additions as other things may not be in place. The positive things to look at are your vitamins etc. Get tested for Vit D, B12, folate and ferritin. We often find we are low in one or more of these and many of us supplement to keep well. So these four help your thyroid work better, help with converstion issues and can help with some symptoms you may have. They need to be optimal, not just in range. SeasideSusie has loads of info on her posts re optimum levels and how to get and maintain them.

Tread slowly with the NDT as it's very easy to miss your sweet spot and if unsure then get tested and post results for help and advice.

Just out of interest which brand of Levo were you given?

[patez in reply to silverfox7]

Hi.

Thanks for the advice.

I will monitor things very closely. I will keep a close eye on my BP and heart rate and temperature.

Ah! Talking about temperature, I just bought a new thermometer. Temp was 35.6, which is a bit low? I have read somewhere that a low body temp is indicative for hypothyroidism?

The Levo I tried was Merck Euthyrox 25 mcg.

Patez

[Hidden]

Start on 1/4 grain and raise after 14 days with another 1/4 and so on until you feel well.

[patez in reply to Hidden]

Thank you.