Swap from T3/T4 meds to NDT?

[misslissa]

I'm currently on 125mcg levo and 30mcg lio and I just don't feel a big improvement. I was diagnosed last Feb, I've been on just levo then switched to combination. Shouldn't I be improving by now? I'm seriously wondering if the levo isn't agreeing with me. When it's upped I never feel better, just worse.

[Clutter]

Misslissa,

It will help members advise if you post your recent thyroid results and ranges and, if you have them, results and ranges for ferritin, vitamin D, B12 and folate.

If you weren't responding to Levothyroxine only and have only recently been prescribed T4+T3 combination it is likely to take a few months for symptoms to improve after you are optimally medicated.

[SeasideSusie Remembering]

misslissa When are you having your next thyroid tests done? You were due to have them in January but had them done in December after only 4 weeks on your new dose.

As you are Hashi's, are you now going to go gluten free as advised in your previous post. That could make a lot of difference. Also, it was mentioned that supplementing with selenium can help.

Changing to NDT may help, it may not. It has a fixed ratio of T4:T3, generally 38mcg T4 and 9 mcg T3 so slightly over 4:1, almost the same as your current Levo and T3. It still has fillers and excipients, just that the thyroid hormone comes from pigs rather than being synthetic.

What about your vitamins and minerals, you were asked if you'd had these tested. Less than optimal levels of Vit D, B12, Folate and Ferritin will cause problems, thyroid hormone can't work properly unless these are optimal.

Your adrenals could be out of whack, so could your sex hormones. They're all connected.

[greygoose]

I can't, for the life of me, see the point of increasing T4 when you can't convert it, and you're taking T3 anyway. You just increase your chances of it converting to rT3. Plus, it's not a good idea to increase both at the same time - one at a time is the general rule.

As SeasideSusie says, DT (we're not supposed to call it NDT anymore! lol) might help you, but then again, it might not. I think you're being much too impatient. You should give the combo a good trial before switching again. Wait the six weeks, and test again, and then, maybe, reduce your T4 back to what it was. See if that helps. And tell your GP that there is absolutely no point in testing too early, just because you have symptoms, it won't tell him anything useful, and he's just wasting money on the tests.

But, I have to ask - I see it wasn't asked in your last thread - were those two tests done under the same circumstances - early in the morning, and fasting, leaving 24 hous between the last dose of levo and 12 hours between the last dose of T3, and the blood draw?

[misslissa]

Hi, my results were as follows. I haven't had my vits checked since August time.

Aug 16

Ferritin 57ug/l (20-250)

B12 571ng/l (190-900) (supplementing and up from 234)

Folate 8ug/l (2-19)

Vit D 106.9nmol (>50)

Dec 16

TSH 0.2mu (0.35-5.5)

FT4 8pmol (11-23)

FT3 3.8pmol (3.5-6.5)

How long is a good trial? I did levo Feb - Sept and combo Sept till now.

I always have my bloods between 8.30-9am, fasted and no meds that morning.

I'm not gluten free, I have researched it and I agree there may be a link.

I can't get my head around me being impatient, this has been nearly a year, it's hard, I'm struggling and I just expected to have made progress but actually I'm worse now than I was pre diagnosis. Does it really drag on this long to get stable?

My GP has jumped me up from 50-125 T4 after these results. It's her that requests such regular tests.

I just want to get on with my life, I have a toddler, I need to get back to work, I want to be healthy again. I feel like life is on hold.

[greygoose in reply to misslissa]

Took me more like 10 years to find the right replacement and the right dose. It's all trial and error. One year is not long in thyroid terms.

Did your doctor really increase your T4 form 50 to 125 in one go? That's insane! Increases shouldn't be more than 25 mcg at a time. And increasing by 75 in one go would make you feel worse. Besides, it's not the T4 that needs increasing, as I said before. It's the T3. Increasing the T4 isn't going to help if you can't convert it. It's low T3 that causes symptoms, not low T4.

Only three months on T3 is not a good trial, especially when half that time you were only on a low dose. And your FT3 is still too low.

[SeasideSusie Remembering]

misslissa By a good trial, greygoose meant that testing just one month after your dose change was pointless and that you need to give any new dose 6-8 weeks before re-testing, see what the results are then. It may need a few more weeks at the same dose and another retest before tweaking the meds.

It has taken me 12 months to go from 187.5mcg Levo only to currently 100mcg Levo and 25mcg T3, with a few tweaks, and I'm still searching for my perfect dose! But in the meantime I've optimised my vits and mins and am addressing adrenals and sex hormones. There is no quick fix. Patience is key.

Your August vits and mins aren't optimal. Did you post those results for members to comment?

Ferritin should be half way through it's range with a minimum of 70 for thyroid hormone to work properly. Iron supplementation is needed.

B12 is recommended to be 900-1000.

Folate should be at least half way through it's range, so 11+ with that range.

Vit D is fine as recommended level is 100-150nmol/L.

The mid-December thyroid results were commented on in your last thread as not being a true reflection of your dose change as you'd only been on those doses of Levo/T3 (75mcg levo and 30mcg???) since mid-November, so you would need to retest within the next couple of weeks, which would be about 7 or 8 weeks after your dose change if that happened after the mid-November results, and if you haven't changed the dose since then.

However, in your first post in this thread you've said you're currently on 125mcg Levo and 30mcg T3. So if your GP changed your dose after the mid-December test then you're going to have to wait 6-8 weeks after that one, so in that case you'd need to retest between end of January and mid-February.

In fact, an increase from 75mcg to 125mcg Levo in one jump is rather foolish of your GP and I honestly don't think she knows what she's doing. All increases in Levo should be in 25mcg increments.

You need to read and learn then when your GP wants to re-test after just four weeks you can tell her that your understanding is that 6-8 weeks is the norm, you could also tell her that 25mcg increases in Levo are the norm. If you understand all about your condition you can have these conversations with your GP.

ThyroidUK's main website has a lot of information, read through it and if your GP wants to know where you've got your information from you can tell her from NHS Choices recommended source of information for thyroid conditions.

If you read other people's posts on here, you will see that self help is the key. Members here understand far more than doctors do about Hypothyroidism and Hashimoto's, it shouldn't be that way but it is. Again, read, learn, find out what works for other people and see if it works for you.

As you have Hashimoto's, and you agree there may be a link with gluten, then if you want to give yourself the best chance of helping yourself to improve then you should take the advice of the Hashi's members here who have found that being gluten free has helped them enormously. Some have found it helps really quickly,mother's it's taken a lot longer.

Also, get yourself some selenium, L-selenomethionine, and take 200mcg daily. This should help reduce the antibodies.

You also have the DIO2 gene I see from other posts of yours, so that complicates things further I imagine. It's not something I have any knowledge of, but you can do a search on here and see what other people have done and said about it.

By the way, no-one will have received any notification of your reply. For members to get an alert that you've replied you need to reply within their message box or tag them by putting @ directly in front of their member name (no space) then click on their name from the list of suggestions that come up and it will highlight in blue like I've done at the start of this message. I've tagged Greygoose in case she wants to comment on your last reply.