Thyroid UK
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considering NDT instead of levo

I have been taking levothyroxine for 8 months now and feel just as bad now as when i started on it. I am seriously considering transitioning onto ndt but i know i will almost certainly have to buy my own. Is there anywhere i can buy it in the uk?

Also I am on 75mcg of levo currently, and my blood reading one month ago was

TSH 3.98 (0.35- 5.50)

Before that my TSH was 0.01 but even when my tsh was this low i still felt terrible. Why could that be?

Three months ago i did test my FT3 which was 4.49 (3.1-6.8)

And my T4 which was 18.1 (10.00-19.80)

Is that FT3 too low?

Do you think the natural thyroid extract would be better for me?

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Link11,

NDT isn't available in the UK without prescription. If members can recommend online sources they will send you a private message.

To send Link11 a private message: support.healthunlocked.com/...

You are undermedicated to have TSH 3.98 on 75mcg Levothyroxine and should ask for a dose increase. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email enquiries@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

FT4 and FT3 were good 3 months ago but will have dropped because its low FT4 and FT3 which cause high TSH. If you were optimally dosed on Levothyroxine you might not feel the need to buy NDT.

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But what I don't understand is why i still felt terrible when my tsh was so low several months back. I thought that i'd feel better with that level. To me that mght suggest that the levo is not working or there could be other issues. If I have to then I shall order the NDT from the U.S. I am desperate to feel better and i feel i may need the T3 it contains.

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Link11,

Symptoms can lag behind good biochemistry by several months so perhaps you weren't optimally dosed on Levothyroxine for long enough. You are undermedicated now though and that will be why you feel bad. Why not ask your GP to increase dose while you are waiting for NDT to arrive?

Having low ferritin, vitamin D, B12 and folate can cause symptoms similar to hypothyroidism too.

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Have you checked your vitamin levels? Levothyroxine works best when your vitamin levels are optimal - NDT too. So you might find neither works well until you get your vitamin levels sorted. Look at other posts to find out which vitamin deficiencies to check for.

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I have had them checked several times and all were in range. Of course I know this does not mean that they are optimal. B12 was 440 last time i checked and i intend to test them all again soon if i can.

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Ok, are you taking any other medication that could be giving you side effects? Would it be worth getting a full set of blood tests by your GP to rule out any other factor?

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I stopped amitriptyline three weeks ago but there hasn't been any difference since stopping. I am only on levo at the moment and have a blood test due in a months time .

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How long does it take for amytripline to get out of your system and is it worth having another blood test now as sometimes other medicines can affect our absorption of Levothyroxine so coming off the other meds might throw things out of balance, only a thought.

I don't know how long you've been on amytriptiline but is there any possibility you might have had some side effects to them while your thyroid was more suppressed so the unwell feeling wasn't actually caused by your lower thyroid levels?

I'm only saying this because I've had reactions to medication and had no idea what the problem was. It was very confusing.

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11 days and my gp says the lab wont accept samples so soon after the previous one unfortunatlely.

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Does your GP think that coming off the meds could change your levothyroxine levels?

If you add NDT into the mix at this point will it be more confusing?

Do you think the formulation of Levothyroxine you have been taking could be causing problems? I tried 4 before I found the one that suited me.

You don't say whether you've got autoimmune thyroid disease because other people on here say that going gluten free makes a difference.

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B12 under 500 can cause permanent neurological damage. Ferritin and folate both need to be 50% through their ranges and D3 at least in the high 90s.

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Oh god i hope that isn't the case. My gp assures me that my b12 level is fine and will cause me no symptoms. I was taking methylcobalamin for 4 months and barely managed to raise my level by 200. I would like the injections but i've got no chance on the nhs it seems...

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Well, you might want to check if you have any B12 deficiency symptoms: b12d.org/overview/symptoms and try the Are you B12 deficient calculator in the first box under the text on that page.

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Amytriptyline, as with any tricyclic antidepressant, can have very serious side effects if abruptly stopped cold turkey! The are supposed to be tapered off gradually at 10% per month. Did your GP follow this basic protocol?? 😬 Please read the following link for your reference:

mentalhealthdaily.com/2014/...

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I did cut down gradually as i was on a high dose and was aware of the withdrawal effects. I admit i didn't do it by 10% a month though. I reduced it by 50 mg every few months until i got down to nothing. I don't feel any different to when i was on it though.

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I finely got a letter to recommend I took NDT then my GP had to write the prescription which cost £11 as it was private and now Pharmacy2U is about to send me my first lot. They don't make it easy but it can be done. Good luck

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I think k the main point is that your FT4 is higher in the range than your FT3 is so that needs addressing first. You need to have B12, folate, Vit D and ferritin tested and then post those results for comment. Your doctor could well say they are fine or normal which means they are probably in range but it's where in the range that matters. These 4 help the Thyroid to work and especially help conversion. Lots of us have to supplement as we are often low in nutrients. Doctors don't appear to know this.

Taking extra Levo won't solve this and throwing extra T3 at it may well make you feel better but I suspect won't keep you are stable as addressing the problem. The change doesn't happen over night and also depends on the levels you are at but it took me nearly 6 months. After many years I had problems with Levo so wanted to go back into NDT so once I'd solved my conversion I started my NDT and once I was stable on the correct dose for me I've been fine.

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