Switching from NDT to T4 and suffering...

[brighter84]

Backstory: Near Total Thyroidectomy in 2004 due to Graves. Was put on 125mcg T4 to start with. Introduced T3 at some point. Was made to come off T3 when I got pregnant with my son in 2009. Stayed on T4 only through that pregnancy and my next pregnancy too. Was bouncing around 175mcg and 150mcg at that time, higher when pregnant and then brought back down afterwards.

Was put back on T3 in 2013, because I asked them to - probably cus I felt tired. I was on 100mcg T4 and 10/20mcg T3 alternating days. Then I still felt like crap, so I put myself on NDT. And there's where most of the trouble started...

I had reactions to Thyroid-S so I came off that and went onto WP-Thyroid. All seemed okay at the start but then I was getting severe hyper symptoms so had to bring my levels down. I was on 3.5 grains to start with, and every time I brought my grains down (gradually) my T4 level would drop and my T3 level would go up. I didn't understand why my T3 level was so sky high even though I was reducing my dosage?? I ended up on 1.5 grains (split in 2 doses) and was suffering from anxiety really quite badly.

Jan 2016 (2.5 grains): TSH = 0.01 (0.27-4.2) AND FT4 = 21.8 (12-22) AND FT3 = 6.9 (3.1-6.8)

Feb 2016 (2 grains): TSH = <0.01 (0.27-4.2) AND FT4 = 13.7 (12-22) AND FT3 = 5.0 (3.1-6.8)

Jan 2017 (1.5 grains): TSH = 0.64 (0.3-5.0) AND FT4 = 7.2 (8.4-19.1) ....they "forgot" to test my FT3 ugh

Jun 2017 (1.5 grains): TSH = 3.30 (0.3-5.0) AND FT4 = 7.5 (8.4-19.1) AND FT3 = 5.3 (3.8-6.0)

Anyway, I assume that since the bloods were done quite some time after medicating, that I was getting an above-the-range FT3 level which was fuelling the anxiety? I was fed up of feeling anxious and terrible, it was stopping me really living or being able to do much, so I agreed with the GP to go back onto T4 only.

However, he put me on a dose of only 50mcg because "we don't want to overshoot it". I don't really think he knew what he was doing. I made the switch straight, and a day or so later started getting really bad air hunger, breathlessness. I looked back over all my medical notes and saw that when I was on T4 only, I was on at least 150mcg so 50mcg was probably making me hypo quite quickly! I bumped the levo up to 125mcg. Most days I felt okay, with a little bit of air hunger around bed time but nothing too severe. However my fatigue was pretty bad.

And that brings me to TODAY where I have felt absolutely terrible. My breathing has been a big issue, I have tingling in my hands and my face and now I have pains in my chest, not in the heart area though. My body aches, I've got ringing in my ears on and off. I've had dizziness on and off even since before the change in meds.

I took 1/2 grain of NDT just in case my body was just not happy with the sudden lack of T3. It didn't make a miraculous difference like I hoped it would and now I'm awake at 1:30am because the breathing thing is so awful. Fatigue and an achy body I can deal with, but the breathing thing...not so much.

I know that my levels of other things aren't completely optimal.

In Jan 2017 my vitamin D was 39 nmol/L and in June was 63 nmol/L.

Calcium in June was low at 2.12 (2.2-2.6).

In Jan 2017 my Ferritin was 42 - previously in 2012 it was 38 and in 2014 it was 102, probably because I was eating less grains and more meat at that time, and in 2015 i was 86.

In Jan 2017 B12 was 247 (lower than it has been in the past, it's generally hovered around 500-570). My folate was 8.9 (>2.5), and it stays steadily between 8-9 over the years. I'm pretty sure I had the intrinsic factor bloods done last year which didn't show anything.

I guess I'm asking for advice as to what to do to get rid of this damn breathing issue. It only started when I dropped the NDT and went onto levo. Do I stick with the dose of levo and hope that things balance out? Do I add in some NDT to give me some T3? I've been okay with converting T4 to T3 in the past it would seem, but after being on at least some form of T3 for the past 4 years perhaps my body is just like "what?!" at the fact that I've dropped it all of a sudden. Or maybe I try focus on the underlying deficiencies as that B12 level seems pretty low, as does the iron, from what I've been reading here.

Anyway, it at least helps me to write all this out and to be around people going through similar and people who are knowledgeable in these matters. More so than my GP it would seem!!

Edited at 02:45am ugh: Looking into B12 deficiency, I definitely have a LOT of the symptoms and have had so for a while. How does B12 affect thyroid function? Not that I have a thyroid to function but you know what I mean...

[hellybaybee]

I briefly switched back to T4 after NDT and developed a goitre... needless to say I switched back. Looking at your results it's only the first one that are slightly over medicated on NDT.. did you get your blood tests first thing in the morning? How long did you give the dosages to settle? I always find a change in dose (in whatever direction) upsets me a little until my body gets use to it. B12 helps you to absorb your medication (I think) but also is you have b12 deficiency, this might cause your symptoms as they are pretty much the same. Also I would suggest that your vitamin d should be over 100 and as your ferritin and calcium are also low, it's little wonder you feel ill... I think you need those sorted first before you change your medication too much. If you feel better on NDT than you do on levo, stick with it and improve the other things first. Vitamin d deficiency and b12 deficiency have practically the same symptoms as hypothyroidism.

[brighter84 in reply to hellybaybee]

Thanks for reading my long long post! The NDT doses had chance to settle and I think the first one and last one were 4 hours after meds and the others I'd had no meds that day. Wish I had been more consistent.

I'm wondering if switching to T4 only just gave my deficiencies that little push to rear their ugly heads that little more??

I think I'm going to go back onto the NDT for now and try and sort the deficiencies. I didn't realise these levels needed to be optimal for meds to be tolerated. Perhaps the anxiety wasn't the T3 at all and it was down to the calcium or D3 or B12 or iron. Wow, I have got quite a lot of work to do!!

[hellybaybee in reply to brighter84]

Yes it's likely, I felt a lot better after having b12 and vitamin d supplemented (I am deficient in both). I think you need to avoid medications for more than 4 hours before blood test... I found this, it might be helpful thyroidpharmacist.com/artic...

[brighter84 in reply to hellybaybee]

Thanks that is very helpful. I think my optimum dose was probably 1 and a half grains which is the equivalent of 150mcg T4 which is what I was on before. Perhaps all the other symptoms were deficiency related. Ugh. Did you supplement with B12 orally or via injections?

[hellybaybee in reply to brighter84]

Injections but I had to go through a charity headed by a doctor because my gp wouldn't administer despite endo advice and advice of dr who checked blood tests 🙄

[SilverAvocado in reply to brighter84]

Four hours is probably close enough to still have a spike in your blood stream. The usual recommendation is 24 hrs for T4, and 12hrs for T3.

[shaws]

1 grain of NDT is equivalent in 'its effect' to 100 mcg of levothyroxine, so 3.5 grains would have been a high dose.

The blood tests were only introduced when levothyroxine came onto the market and as it is T4 only, a blood test when on NDT or T3 or T3 added to T4 cannot be the same. and TSH will also be lower due to the T3 in the dose.

On NDT etc it is how the patient 'feels' on a particular dose which is the priority.

Breathing problems are also a clinical symptom of not being on sufficient.

web.archive.org/web/2010112...

Usually when switching from levo to NDT, we do a straight swithcover and then about every week or so raise by a 1/4 tablet until we feel well. You should take pulse/temp before you begin so if you feel hot for instance you may find temp hasn't changed.

web.archive.org/web/2010112...

It is now advised the our B12 be around 1,000 so taking sublingual methylcobalamin B12 us advisable. In range isn't sufficient.

[brighter84 in reply to shaws]

Thanks. I think I may try again on NDT and sort out the other issues I clearly have. I definitely feel a thousand times worse switching back to levo!! I hate how it's just a numbers game to the doctors

[brighter84 in reply to shaws]

Also, the breathing issue only started once I swapped to levo from NDT. I've never had any issue with my breathing before

[shaws in reply to brighter84]

Try taking an anti-histamine tablet before your next dose as you could have a sensitivity to something in the NDT. If it resolves the breathing problem change to another NDT. I had to try several myself.

[brighter84 in reply to shaws]

I can't tolerate anti histamines anymore haha. They make me feel horrendous!! I was generally feeling okay on the NDT around the time I was on 2 grains, but they made me reduce it because of the high TSH 😤And the breathing issue is nothing to do with allergy to NDT as it only started when I switched back to levo

[shaws in reply to brighter84]

If you were feeling o.k. on 2 grains of NDT I don't know why they reduced it if your TSH was high as I think an increase. would have been in order. This is a link re breathing problems:

web.archive.org/web/2010103...

[brighter84 in reply to shaws]

Thanks that link is very helpful. They reduced my dose from 2 grains because my TSH was <0.01 without taking any meds on day of test.

[shaws in reply to brighter84]

Your TSH was low and if we take hormones that contains T3 our TSH will be low

Dr Lowe had written an article called The Tyranny of the TSH as that is what it is, we get hormones according to the TSH and not FT4 and FT3. Considering T3 is the only active hormone and that levo (T4) has to convert to T3.

[SilverAvocado in reply to brighter84]

Purely based on these blood tests, 2 grains looks the best for you. I might even gave tried 2.25, as in 2 grains your frees are still a little low. Might even try raising to 2.5 again later to see if it still pushes things over, as there seems a suspiciously big different between 2 and 2.5 grains.

TSH is the least important of the 3 numbers. Many people need to have it suppressed in order to get the other numbers good. FreeT3 is the most important, as it is the active hormone, and will usually be closest to symptoms. The rule of thumb is that you want this number in the top third. You want the freeT4 up near the top of the range, too.

[Clutter in reply to SilverAvocado]

SilverAvocado,

FT4 is often low in range and sometimes below range when people are taking NDT. Most people taking NDT will feel well with FT3 in the upper third of range. TSH will usually be suppressed <0.1.

[SilverAvocado in reply to Clutter]

Thanks Clutter, of course you are right. FreeT4 doesn't really matter.

[Clutter in reply to SilverAvocado]

SilverAvocado,

It doesn't matter if you are taking T4+T3 or NDT but it matters when you are taking Levothyroxine only.

[Katepots]

The B12 was where I was going to go first. Does sound like a lot of B12 symptoms.

Get all your vitamins optimal.

Do you think you could be allergic to any of the fillers?

Re results, being on NDT will suppress your T4 and TSH will be v low so that will always freak the GP out. Go on how you feel. You were only just slightly overmedicated on the higher dose.

I probably wouldn't take Levo and NDT together though.

You could add T3 with Levo. But just NDT on its own.

Bit of a mystery with the breathing issue as you seem to have that when you are over and undermedicated hmmm

Get your B12 levels up and see if that makes any difference.

Sorry you're suffering.

[brighter84 in reply to Katepots]

Thank you. I don't think I'm allergic to the fillers no, as I haven't had allergic response since being on WP thyroid for 3 years. It's the one with least fillers.

I guess I didn't really understand how T4 results on NDT work and thought I was undermedicated. I'm going to jump back onto the NDT dose I was on last and I've got some methyl B12 arriving today that I'll start on. Once things settle down (pleaaaaase let them settle down!!) I'll start on the iron as well.

What's the issue with taking NDT and levo together?

[Katepots in reply to brighter84]

With NDT you get a balanced dose so if you add Levo you're upsetting the balance.

[brighter84 in reply to Katepots]

But the ratio of T4/T3 in NDT isn't the correct ratio that the human thyroid would produce?

[Katepots in reply to brighter84]

But you're getting T3 in it. Balanced. The body converts T4 to T3 so your basically helping the body along with the NDT if you get my drift.

It's the T3 that we need as the active hormone. 5 times more active than T4.

[brighter84 in reply to Katepots]

Yeah I think that's where I'm getting confused as to where my T4 levels should be when taking NDT in order to not be symptomatic. But then it's hard to tell when I've got all sorts of deficiencies causing all sorts of symptoms!!

[SilverAvocado in reply to brighter84]

Generally the freeT4 doesn't matter, and will probably be quite low on NDT. FreeT3 is the most important number and is the one to base dose on.

Unusually some people prefer extra T4.

[Katepots in reply to brighter84]

Here's an excerpt from a blog

A decrease in TSH and T4 levels is exactly what one would expect in a patient receiving exogenous T3 therapy. In fact, the resetting phenomenon (p48) is often not seen unless there is a decrease in T4 levels for a time. It is not alarming if their T4 levels and TSH levels are suppressed even to essentially zero, for a time (provided the patients are feeling very well without any side effects, and their temperatures are not above 98.6). Such low levels are not always necessary, but decreased T4 and TSH levels are an indication that T4 and RT3 levels are being well depleted (which is often the point of T3 therapy).

I'd sort your vitamin deficienciesand stick with a couple of grains of NDT and I'm sure you'll feel much better.

[Clutter in reply to Katepots]

Katepots,

The ratio of T4:T3 in NDT doesn't suit everyone. Many people add a little T4 or T3 to tweak it to suit their requirement.

[Katepots in reply to Clutter]

Ah ok.

I'd read in STTM that it was advisable not to add T4 with NDT but yes had known of adding T3 to tweak.

I guess we are all different.

[Clutter in reply to brighter84]

Brighter84,

There's no issue taking NDT and Levothyroxine together if that's what you want to do. When taking NDT T4 is often low in range and sometimes below range. It isn't a problem as long as FT3 is good in the upper third of range. TSH may be suppressed <0.1 when FT3 is good.

[Lozzer66]

I was considering going back to t4 as I did convert and I'm still not right after being on ndt for 9 months or so...I had a got up to 3 grain but still not feeling right and still hypo symptoms. ..however I hadn't realised the important of vitamins and how you can't utilise meds properly without optimal vitamins!Blood tests showed I was in range but in reality I was low....I have now started supplementing and already feel a bit better even though I'm taking less ndt!...also you need to support adrenals because again if they are out of whack ndt won't be used by body properly!If I was you I would go back to ndt on a correct dose and bump up the vitamins .

[brighter84 in reply to Lozzer66]

Thanks. It's one heck of a rollercoaster isn't it?? I had my cortisol tested to rule out adrenal fatigue and my cortisol is pretty good so thats one thing at least. I guess when they tell you "have thyroid surgery, all it'll be is one little tablet for the rest of your life" they were lying. 🙄

[Lozzer66 in reply to brighter84]

Yeah ...I was told 'hey your underactive. just take this little t4 hormone pill for life and you will be ok!"..lies indeed ..that's why I resorted to my own devices like the majority of us lol!..btw it's no good just doing the early morning cortisol test ...that doesn't give a true picture of what's going on ...usually adrenals are out if you've been on wrong medication or not on correct amount of medication for a long period of time and the stress that that in itself causes amongst other things !Ear ringing can be a symptom of this as well as under/over medication! What a balancing act it all is !hope you feel better soon .

[SlowDragon Administrator]

You need vitamin D, folate, B12 and ferritin and tops of ranges for thyroid hormones to be able to work

Also you may find gluten free diet very helpful even though you have had most Thyroid removed

Gluten is linked to leaky gut and low vitamins

amymyersmd.com/2017/02/3-im...

See SeasideSusie excellent vitamin supplements replies to various other posts

Eg

healthunlocked.com/thyroidu...

[brighter84 in reply to SlowDragon]

Thank you. Yes I need to clean up my diet again, definitely let it slip

[Clutter in reply to SlowDragon]

SlowDragon ,

None of them need to be top of range. Ferritin and folate are optimal half way through range. Vit D is optimal 75 - 150nmol/L and B12 500 - 1,000.

[siddooo1]

Hi,

I am sure that I read somewhere that anaemia can cause shortness of breath. It would be worth getting this tested first and then supplementing to see if it improves. I would stick to ndt but at a lower dose to begin with

[brighter84 in reply to siddooo1]

That's what I'm going to do yes. Thank you. I'm feeling like the breathing issues are a hypothyroid symptom though as they only began when I switched back to T4. Or maybe it's a combination of factors who knows. It's scary though. I'd like to be able to breathe properly!!!

[Caze]

In Jan 2016/Feb 2016 you dropped from 2.5 grains to 2 grains. It might be better to adjust the dose by 1/4 grain at a time and wait about 6 wks before testing again, making sure you do not take any thyroid meds the day of the test. Sometimes a small adjustment can make a difference.

[brighter84 in reply to Caze]

Thanks. I was just reading a comment on another post saying that those on NDT feel best when T3 is in the top third of the range between 5.5 - 6.8 so perhaps the 2 grains was a little low for me and the 2.5 grains too high so perhaps you're right. I think the other results aren't particularly accurate because I had them done 4 hours after taking a dose.

[brucergoldberg]

I am in the USA, I came across this post on google. Your post sums up EXACTLY what I am going through now. I take my NDT, feel HORRID all day. Then by night time I feel fabulous. Its almost as if I wrote your post ( but was not pregnant LOL). im dying to hear an afterthought as to what happened after you posted this.