Please someone help, feel I'm back to square one, regretting starting thyroxine, very ill, getting conflicting information.

[MaxandMe]

hi all,

I've posted a limited number of times before, but couldn't really much due to how Il I've been. I'm in such a bad way again and after joining a different thyroid group I like some other oppinions on what might help me please. No use trying gp, absolutely useless and if I make clear symptoms returning or feel worse Dr uses it as excuse to say "perhaps you should come of thyroid meds as you were only ever borderline 😓

I've recently got access to my list of tft I've had over the years and feel furious I never had any during my pregnancy or directly after, I was so uneducated then.

I'm going to write out a list of all the tests I've had hoping someone can see something or notice the pattern I am. I've been told I converted to t3 fibe and actually I'm pooling with rt3 so t4 is no use at all, I fought so hard to get t4 and had advice to that effect I just don't know what to think.

all tsh is measured in mu/l range (0.3-4.2 mu/l

all t4 measured in pmol/l range (12-22 pmol/l)

2008 tsh 1.49 t4 1.27

2009 tsh 4.21* t4 16.7

2011 tsh 3.06 t4 17.7

2012 tsh 2.11 t4 17.3

2014 tsh 2.27 t4 15.3

late 2014 symptoms of hypo began severely, which is when my child was 1 years old, id been getting hyper symptoms prior to that but accounted it to being first time mother and breastfeeding.

late 2014 tsh 5.19* t4 14.8 next 3 months later

2015 tsh 5.22 t4 + 3 months later + taking a thyroid support vitamin next bloods showed..

2015 tsh 2.2 t4 15.3 2months later..

2015 tsh 2.15 t4 14.6 next 5 months later..

2016 tsh 3.46 t4 13.1 Dr pronounced me cured! Although I was at deaths door almost suicidal from how bad I felt. I then paid for private tests I will attach these on the post but as rough..

2016 tsh 5.13 t4 14.6 gp finally agreed to 100mcg thyroxine. However I felt bad on this, hungry, puffy, wired, anxious, chest pain, sweating etc advised to stop med for 2 days prior to retest..

2016 tsh 1.27 t4 17.9 I asked if possible to drop to 50mcg, gp agreed, retest on 50mcg..

2016 tsh 1.42 t4 17 ft3 4.9 range (3.1.6.8) pmol/l

Nov 2016 tsh 1.65 t4 17.6

when I first started 100mcg many symptoms imroved namely the depression, eczema and constipation. I thought things slowly were but I am now like I felt before taking it but worse! My hairs falling out along with eyebrows, dead eyes, puffy face, weight gain, extreme fatigue, pain, depression, mood swings, you name it i feel like maybe I'm not hypothyroid as the others said and maybe its an adrenal or vitamin issue (I'm working on my low d and suboptimal b12) but i feel like i have two options increase levo to 75mcg see how i go and or add t3, i asked gp for t3 or ndt was a big fat no. But other group said more Levo would worsen my rt3 pooling.

please someone help, I'm going through severe stress does levo need increase in times of stress? All blood tets are free t4 and t3. I also had most in the afternoon as i couldn't get out to morning ones due to such fatigue, until i found out from here and last few i had n morning. I feel like some may have been way higher if id had them in the morning. Hope this all makes sense, i really dont know what to do anymore. Also is t3 safe when breastfeeding?

thanks very much xx

p.s I fast before tests although mainly only sinceshown borderline and found info on here, I dont take meds before test, so its taken day before test. I taket4 in morn with water, 30 mins to 1hr+ before eating and other meds, but supplements are taken over 4 hours after taking t4. I'm currently on 50mcg, tried taking at night when on 100mcg and felt wired.

[galathea]

No.... Dont increase the levo..... You already have too much reverse t3, Your body isn't fully utilising the t4, its getting rid of it by making rt3. Best thing might be to stop taking the t4 and rely on t3 only until the reverse t3 clears.

Heres a link to the rt3 website which has now joined forces with the adrenal site.

rt3-adrenals.org

[MaxandMe in reply to galathea]

that test was before I started taking Levo I need to get a new full thyroid panel. But wont stopping levo make me more I'll? I thnk I've got high cortisol, but I take asthma inhalers, and cant afford all the tests and supplements I need. I did have a progesterone deficiency before starting levo. Cant afford a hormone panel. Just so I get this right does it mean I'm not hypothyroid? Thanks.

[galathea in reply to MaxandMe]

Well, taking the levo when you had high levels of rt3 has maybe increased those levels, so not only are you hypothyroid, but now you could be more hypo than you were to start with....

Worth getting a blood test to find out,

Have you had a look at the rt3 website? It could possibly be that the levo is making you more sick....

X

[SilverAvocado in reply to MaxandMe]

Maxandme, to answer your last question, No, Galathea is not telling you you're not hypothyroid. T3 medication is a different for of thyroid hormone replacement than the form that's in your Levothyroxine.

Levo contains T4, the storage form of the hormone and the same one in the FreeT4 blood test. T3 is the active form your body actually uses. When you take T4 tablets, your body has to do a process to change it into T3 before it can use it. Some of us are ill partly because our body is bad at this process, so the T4 you take doesn't do any good.

But there are also T3 tablet. If you take these your body can use the T3 as it is, without having to process it first.

[MaxandMe in reply to SilverAvocado]

thank you for your reply. I just have always felt like I should the on levo as I was only borderline and gp still adament I'm not hypo, so was just wondering if that meant I'm not. Thank you for clarifying. I also had one borderline result almost when I first joined that surgery and they never told me. So would it help me cope a bit currently trying a bit of t3 in addition to levo whip I get my vitamins higher?

[SilverAvocado in reply to MaxandMe]

I've just had another look at your tests. You've only had your FreeT3 tested once I think? Before you started on Levo. So actually there isn't any evidence here that you aren't converting. If I were you I'd try to get another FreeT3 test to find out how you're getting on with the tablets.

This is good news really, as trying to get T3 out of a GP is like trying to get blood out of a stone. So you'd likely have to buy it yourself

In terms of your results overall, you are definitely hypothyroid. TSH results like 4 and 5 are pretty high. It's just that GPs don't understand these bloods very well. Most people on replacement feel better with it around 1(including below). Your fT4 has been scraping along the bottom, you'll probably feel better with it in the top quarter.

This also applies when you were on 100mcg Your result there is still not great, your fT4 could be a bit higher. So the problem is likely that you were struggling to tolerate the dose, not that it was too high.

Struggling to tolerate will be because of things like cortisol and vitamins not being sorted. So those are too priority, as no thyroid replacement will work properly without them, it doesn't just apply to NDT. The vitamin D deficiency is a really big thing. Doctors tend to underestimate the importance of vitamins, so if even they say you're deficient you will be getting tons of symptoms.

Another funny thing about your results is that your antibodies are both low. This means you don't have the auto-immune disease Hashimotos (probably, it's worth retesting as you can sometimes get a false negative). This is very unusual, as nearly all hypothyroid sufferers do have it. This means you don't have an explanation for your thyroid problems. It's worth bearing in mind that this may be something else, like a pituitary problem. Or your thyroid may just be struggling because of other issues, like the vitamin deficiencies.

[MaxandMe in reply to SilverAvocado]

hi there I have had a free t3, recently whilst on thyroxine, its in the body of the message. Think its the second to last result, at 4.9 range 3.1-6.8 pmol/l. Its a bit too much text I know sorry.

[MaxandMe in reply to SilverAvocado]

tank you for that reply. That makes sense, will it work testing antibodies if I'm on t4? I've been very very ill for a log time and most of those tests were v later afternoon so I guess tsh was lower than it would have ben in morn. I have multiple diagnosis but after my child was born I went through classic hyper the hypo took gp as you can see ages to agree to t4. I had blood test recently that showed high blood cortisol. I cant afford the saliva and thyroid tests private atm. Is the thyroid panel priority?

I'm working hardon vitamins I've been very low in d for years with prescriptions never bringing it up enough. So now I'm doing, k2 from chickpeas, mag, fish oil, b complex and will be self injecting b12 soon.

I have had a ft3, its in the post I posted above, sorry for confusion. Wat tests delve into pituitary please? Do I also need to rule out parathyroid hormone?

[SilverAvocado in reply to MaxandMe]

Hi Maxandme, looking at that fT3 result I don't think you're having specifically a conversion problem. Both fT4 and fT3 are about halfway through their range. But both numbers are not really higher than they were before you started Levo.

I think before trying T3 or any other form of thyroid hormone, it's worth increasing that dose. At the moment the thyroxine you're taking is reducing your TSH, but not increasing the useful hormones in your blood. This isn't too surprising as it's a very low dose.

You could try a very gradual increase. Figure out the smallest size you can cut your tablets into, and then add that every second day, perhaps. Stick with that for a few weeks then add another small increment.

Yes, antibodies would still show when on T4. I don't know much about pituitary issues, it would be worth making a new thread as they don't come up much here.

For Vit D, I use Thorne's liquid with K2. It cost about £25, you take a few drops a day, and its lasted over 6 months. I've got over half left. You need to take several thousand IU per day to build yourself up. I'm sure others will give you more specific advice. But don't rely on doctors as they will suggest very low doses.

[MaxandMe in reply to SilverAvocado]

hello. Thank you, sorry I wasn't clear I'm on nutri advanced d3 liquid 6000iu andk2 seperate as the Thorne uses palm oil. I have an unused packet of 25mcg tabs would cutting one in Hal and changing to night time be too much increase do you think?

[SilverAvocado in reply to MaxandMe]

Often people increase 25 or 50 at a time, so it would only be too much if you struggle to tolerate it. My guess is that your final goal will be to get to more than 100mcg, as your fT4 was still lowish at that dose (most people feel better with fT4 in the top quarter of the range, so over about 19.5).

So its whatever you can coax your body to accept. Because T4 has a half life of almost a week, you don't need to take the same dose each day, it will even out over several days. So you could try a half tablet every second day. If that feels too much skip a few days (you can skip your whole Levo dose if you feel completely terrible), then start over taking the extra only a couple of times per week.

If you tolerate it, stick with where you are for a few weeks, and then try to increase a little more, maybe the half-tablet every day. Stick a few more weeks, and so on. When you want to have a blood test, make sure you've been on the same dose for 6 weeks in a row to make sure the numbers are accurate.

[Jmay88]

Omg! I've been there. I would recommend that you stop taking synthetic t4 only medication, I became completely unwell on it and depressed, and switch to NDT. See stopthethyroidmadness.com to guide you.

[MaxandMe in reply to Jmay88]

thank you for your reply, I've read as much as I can on that website. Thank you. I came to the conclusion that because my vitamins and probably adrenals are out, ndt would be more trouble than good right now, as those factors can stop it working right. Plus I'm a single mother and I have no extra support or help, so I things nose dive further I am worried, I'm only just holding on. I just don't knw what to do. I worry about just stopping t4 dead. Do you have other issues with eg iron, b12, d3, adrenals? How was the adjustment to ndt? How long did it take, what were your symptoms in between?

[Jmay88 in reply to MaxandMe]

I was on synthetic meds for approximately 14 years (some NDT in between) and did horribly on them starting approx halfway through. I think that medication eventually shuts your thyroid down. It took a while to be able to finally be able to transfer over to NDT, with most likely major adrenal issues (left a very stressful marriage to finally try to get better, and it's taking a while). I take adrenal glandulars all day long and am getting my iron tested again this week. I couldn't take the synthetic thyroid medication side effects anymore, and I am doing better in the 2.5 grains of WP Thyroid that I take incrementally throughout the day sublingually. Not optimal by any means, but getting better and moving forward.

[galathea in reply to Jmay88]

Sublingual, split dose ndt? My, your dosing sounds difficult.

.... Have you tried taking it in one dose, last thing at night,,,,, just swallowing it? Much easier and works well for me.

The free t3 in ndt is thought to be bound, so you dont get all the ups and downs you do with the synthetic t3 which is unbound.

You need t3 at night when you make cortisol to see you through the day.....

Xx g

[Debbstar in reply to galathea]

Hi Galatea, can I ask what u mean by ndt being bound and T3 unbound please. Thanks

[galathea in reply to Debbstar]

Free t3 is immediately available and provides energy, but bound t3 has to be released by its carrier protein..... Its another level of complication. And is why i think taking the synthetic t3 which is all free causes such problems....

Here is an article which explains... verywell.com/the-free-t3-ft...

And this one explains the difference between syntheitc and ndt..... If you read to the end..... thyroid-s.com/natural-desic...

Xx. G

[Debbstar in reply to galathea]

Thank u, will have a read now x

[MaxandMe in reply to Jmay88]

thank you. That's what worries me I'm not in a place right now where I can correct adrenals financially or time etc so I'm focusing on d3 and b12 plus supporting vits and eventually I will go on to ndt. That sounds very hard but I can empathise my relationship was also making me ill so I had to get out and its very hard.

[silverfox7]

When you are diagnosed with a thyroid problem you always have one and the reeson we take medication is because something isn't working right and so we aim to do this by taking the medication though it's not always easy to get that right. If it was there would t be so many of us doing things in different ways and not always succeeding at first. Did your doctors start you on 100 mcg all at once? Usually we start it 25 or 50 to slowly get our bodies used to it so that may not have been comfortable.

So a little about how it all works. Our bodies contain both T4 and T3 but the T3 is the important one as T3 is what every cell in our body needs to function well. If some cells aren't getting enough we get symptoms and depending what is going short these can vary from person to person. So T3 is the active hormone but T4 is the storage hormone that when the body needs more T3 the T4 is used and converts to T3. What tells it to do this? The pituitary in our brain senses this and sends a message to the thyroid to release more T3. This message is the TSH so when this is high your body is struggling for thyroid hormones and when it is low less so. This is vet simplified but I hope it helps you understand what should be happening.

Sometimes the pituitary fails us and sends out wrong messages so we can end up with too much or too little in our bodies. Sometimes something goes wrong converting the T4 into T3 and that is because often our bodies are low in vitamins so we need to test them and supplement accordingly. The most important tests are as you have heard before are D3, B12 and folate. In the U.K. So many are low in D3 as we do not get enough sun but in the other hand we can get too much sun! I you have dark skin or a sun tan we have difficult absorbing and in the winter months although we can gave sunny days the sun is too week to help us. All three should be tested and addressed and this is important in all thyroid medication. Sometimes the doctor doesn't fully understand but has heard unhelpful rumors so doesn't give us enough to feel well. Sometimes we get reverse T3 and I'm not up to speak on this as to how to recognize this but let's just isolate a single cell. It has many recapture sites for everything it needs to do to function properly. These thinks tgstcit needs are carried in our blood and to just talking about the thyroid receptor sites latch on when they see a dockoing port. Thisxwhere in not up to speed with the why's and wherefores but sometimes our bodies gets itcwrong and the wrong components clog up some of the receptor sites. So if they are in the wrong port not only can't they do their job but they are blocking the right thing getting in so end up with too much T4 not being utilised and so less T3 so this T4 has to be used up so that the active T3 can get back in to help us feel well.

This is why Galatgea says to stop T4 to stop more clogging up the system and just take T3 to get the balance right. Some of us only take T3 so they are fine on T3 only but havecto monitor how they take it more carefully

So I hope this explains what is happening, how we sometimes have to do something differently and how we have to give support along the way

Hopefully some one will chip in who has had this problem and tell you more about it sorry such a long postcand I may have covered what you already knew but for clarity assumed no one had told you what is going on

[MaxandMe in reply to silverfox7]

i been thinking about t3 only for a while, do you know if safe when breastfeeding? My child is not a baby, is a toddler, and gp wot supervise my using it. I asked, well begged for t3 or ndt on nhs, i waa told an emphatic NO. yes gp started me right away on 100mcg, it felt horrid. I am low in d3, I have been for many years, could never get it raised, so now I'm taking it into my own hands, I'm taking, d3, k2, not from soy, magnesium and fish oil. I'm soon going to be having b12 injections, but noneof this is with my gps guidance. My usual gp is leaving so I'm so nervous about the Dr ill end up with. So taking t3, d3 etc plus b12 injections are all without Drs guidance. My crp was recently raised above 5 at 7.5. I'll be self administering b12 injections. I've done a lot of research on this, and with the help of anther group in going to be having injections frequently to see f that helps. I know my adrenals are out, cant afford the test at the moment, I recently had a blood test and cortisol came back raised, but need to save for the saliva test. Thank you for your reply.

[Margjean in reply to silverfox7]

You explained that very well Siverfox. Do you think lactose intolerance has anything to do with it?

[silverfox7]

I don't know about breast feeding but if no one jumps in on that start another thread. D3 is so necessary to get thyroid meds to work and Morse of us are very low has the doctor tested and prescribed? If you are low you need a booster dose to get up up quickly as a low dose won't help at all. So mentioning that as if only given a small dose that might be where the problem lies. In glad you have been doing your own research but it's sad that we need to. So you sound on top of your B12. You need to take a good B vitamins to balance things better and also look into having folate tested as that helps conversion as well. When I gotecmine tested it was under range and even after 3 or 4 months of supplementing it only just crept into range! I supplemented and finally got much higher in the range.

[MaxandMe in reply to silverfox7]

thank you. Yes been deficient for many years, Dr prescribed all sorts over the years, even calcium it never worked so on that test I attached I was taking 4000iu prescribed and was still low, so nw I'm on d3, 6000iu, k2 from chickpeas, magnesium, fish oil, b complex, and going to be getting b12 injections soon, also on an immuno booster which contains vit c and anthcyanins. My cortisol came bck raised recently im a blood test but I cant afford the saliva test currently. I wil be taking extra folic acid when I start injections to support them, my latest ferritin was top of range and crp so I think that was due to inflammation somewhere.

[greygoose]

It's very difficult to make any intelligent comments when dealing with just an old test. But, just looking at that old test, I cannot for the life of me see why everyone is fixated on your rT3! It's high in range, but not over-range. And you do seem to be converting to enough FT3, if we compare the FT4 to the FT3. However, on that test, your TSH is much too high.

Your TSH has come down, now, so hopefully, your FT3 has increased. But we really can't guess at these things, you really need the tests.

What really jumps out at me from that old test, is your vit D and vit B12. Did you start supplementing them when you saw those results? Because they really are too low. The vit D3 should be at least 100, and the vit B12 at least over 500. Both of those will cause horrible symptoms and fatigue. Your ferritin should be higher, too, at least mid-range. And I don't think there's any point is agonising over T3 and NDT until you have optimised those nutrients. You probably would feel any better than you do on levo.

[galathea in reply to greygoose]

GG. If maxanme had high rt3 before taking t4, chances are its even higher now.

That supposedly good free t3 result, includes the rt3 so thats why we rely on the ratio of rt3 to free t3. I suppose the free t3, should really be renamed as it includes ft3/rt3.

The tsh would be high on the old test because of the rt3, so when she increased to 100mcg of t4 the free t4 increased, but so did the tsh and she felt worse. Presumably because the rt3 had increased.

Which is why we are all fixated on it.....

Xx

[greygoose in reply to galathea]

No, galathea, that FT3 result does not include rT3. They are two different tests, which are exactly what they say : rT3 and Free T3. And it doesn't naturally follow that her rT3 will be higher now than it was then, because rT3, being a natural, and necessary, process, fluctuates.

And, no, the TSH takes no account of the rT3. There's no connection. TSH is just proportional to the amount of hormone in the blood (in theory) the pituitary does not distinguish between FT3, rT3 or bound T3 - or T3 and T4, come to that.

If that's what you're all thinking, then I understand why you're all fixated on the rT3. But it doesn't work like that.

[helvella in reply to greygoose]

Our respected diogenes has clearly stated that rT3 and FT3 are separate in terms of tests.

Do also bear in mind that no-one distinguishes between Free rT3 and Total rT3. If we argue FT3 is so much more important than TT3, then so too we could argue that Free rT3 is similarly more important than Total rT3, couldn't we?

As far as I know, there is no Free rT3 test. So we are very much into apples and oranges.

[greygoose in reply to helvella]

Oh, OK! I didn't know that rT3 could bind... Yes, that would make a huge difference to everything, wouldn't it!

[MaxandMe in reply to greygoose]

hi grey goose,

thanks gpr replying, in the body of the mesage is all my tests I've had, the picture is the private one and that's explained in the message where it fits, I just added the pic as it was a lot to type utvin addition to the rest. That test was done before starting thyroxine. In my second to most recent tst I typed out I also have a ft3 result too.

I joined a b12 group and I've learned enough to know I need injections, but gp won't prescribe them and I've kind of ruined chances of getting them as I supplemented with a lot of sublingual spray. I'm going to self inject I have all supplies needed but I need to hold off as I think my child is b12 deficient too so I'm waiting for further tests for him then ill inject myself. I fgired as I breastfeed if may mess his results up. My d3 is always low on prescription fultium, I was on 4000iu when I had that test, I'm now on 6000 iu pd with magnesium, k2 @nd fish oil. The GP although been deficient for years told me I now needed to buy my own so I am now taking it into my own hands. Its a soy free k2.

[greygoose in reply to MaxandMe]

K2 is usually made from natto, which is fermented soy, so won't do any harm.

Yes, I'm afraid your results are very difficult to follow. But, if I've understood correctly, your FT3 is now exactly mid-range. Well, that would be too low for most people. Most of us need it up the top of the range to feel well. But, I honestly can't think that taking T3 is going to make much difference at the moment because you are converting well. And the bulk of your problem is likely to be your low nutrients. Honestly, low B12 can make you feel so terrible. And, only when you get the nutrients sorted, are you going to be able to see more clearly, what sort of thyroid hormone replacement you need. It could very well be that you are going to be just fine on T4 only.

[MaxandMe in reply to greygoose]

I'm sorry if I've made it confusing, I wrote it at 3 am so was very tired and I tried to add in the things that happened at the time, like child birth, starting levo, dose decrease. Was it that that made it difficult to understand or just the way my results have turned out? I definitely am working on my vitamins? Do you think I might feel better temporarily better on raising levo to 75mcg?

thanks

[greygoose in reply to MaxandMe]

No, it was more the lay-out of the results, not spaced out enough.

I don't know what you mean by 'temporarily better'. Are you planning to increase it and then decrease it again?

Increasing your T4 to 75 mcg will help, of course. But, that won't improve your nutrients, you'll still have the symptoms that they cause, so you'll need to continue working on improving them at the same time.

[MaxandMe in reply to greygoose]

I dont 100% know what I meant either lol. I think I just meant will it patch me up enough while I work on optimising my vitamins, ie will it improve symptoms, not worsen them? I know hard to say. On 100mcg I felt so ill and all hypo symptoms were heightened I gained kilos in about a week, all puffy round face too. So I that because I wasn't tolerating the dose, not that I didn't need that level of medication?

I think I'm just scared of feeling worse as I really am not coping, and I need to be able to, so its scary.

[greygoose in reply to MaxandMe]

Yes, I can understand that. But, the only way you will know if it will help, is to try it. No-one can predict anything, where thyroid is concerned, because we all react differently.

It was probably your low nutrients that made you react so badly to the 100 mcg dose.

[MaxandMe in reply to greygoose]

yes, I can see that. I am increasingly symptomatic, I have gained rapid weight, my neck and throat is sore, achy and feels weird, I dont know how else to describe I, I'm getting constant headaches, and hairis in a bad state, brittle, dull, snapping, dry, falling out, I'm covered in eczema I cant get rid of, my face is puffy and round, and I look constantly tired, drained and awful, ifeel miserable, and low, I'm in terrible pain, no libido. Does this sound like a resurgence of hypo symptoms to you or that thyroxine isn't right for me? I know its hard to say just thought maybe there was some give away to which it might be in symptoms. And I've always been fatigued but this is a joke, I wake up and I'm falling asleep sitting on sofa, I nap in afternoon and feel dread when I wake up as I know even moving is so tiring. 😢

[greygoose in reply to MaxandMe]

I think that's the hypo, because you need an increase in dose. You might have reactions to fillers in the tablets, but I don't think they'd cause all those symptoms.

[MaxandMe in reply to greygoose]

found one brand horrible for me, activis, then onto mercury pharma was much better. Thanks for your input I'm adding 25mcg today here's hoping for a better Xmas if this works.

[greygoose in reply to MaxandMe]

I'll keep my fingers crossed for you. But, if it doesn't work instantly, it doesn't mean it's not going to work at all.

[silverfox7 in reply to MaxandMe]

Are you still taking fultium? I read on the Vitamin D group that the NHS prescribe a vitamin D which had carcinogentic compounds in it! I pester to find out which it was as I am prescribed on the NHS -Pro D3. Turns out it is the one you were taking. Just think about changing if you are still talking it

[MaxandMe in reply to silverfox7]

no not taking it anymore but have been for years and its been constantly low or at 50 I'm in terrible pain I worry I have oesteopenia how will I know? Thank you I was on pro d3 then adcal for a while.

[silverfox7 in reply to MaxandMe]

Glad you are no longer taking the Fultium.

[sulamaye]

T3 isn't going to be unsafe whilst breast feeding, it's not a drugs that can pass to the baby, it's a replacement of a natural hormone. If your oestrogen is high it doesn't pass to the baby either. T3 will either address your health issue or not it won't affect breast feeding, it's not toxic in that way anymore than t4 is. You need to do a saliva stress test too. There will be a reason u r making rt3 and high or low cortisol is one of them and it also makes taking thyroid meds difficult if cortisol is a problem.

[SlowDragon Administrator]

I would agree with #greygoose to stick on Levo, certainly at the moment. You seem to be converting and this should improve more once you improve your vitamin D, B12, folate and ferritin.

Are you taking B complex along with b12 to keep B's in balance. This will also improve ferritin. Take B complex with breakfast (it can make you feel a bit wired to begin with)

One other suggestion, is to try taking the 50mcg Levo at bedtime. I know you tried it when on 100mcg (which was far too high a dose for GP to start you on, no wonder you felt awful) many of us have to increase dose very slowly to give the body time to adjust, stepping up in 25mcg steps or sometimes even 12.5 mcg steps (alternating doses e.g. 50/75)

Taking the 50mcg dose at bedtime might improve the uptake (can have the same effect as small dose increase in some people). If you find it better it can make it easier to fit the variety of vitamin supplements dosing times in the day too.

High cortisol can affect thyroid uptake, and taking Levo in evening, when cortisol should be at its lowest point in the day, may help.

verywell.com/should-i-take-...

archinte.jamanetwork.com/ar...

Long research article - final conclusion paragraph below

"In conclusion, bedtime intake of levothyroxine in our study significantly improved thyroid hormone levels. This may be explained by better gastrointestinal bioavailability at night or by less uptake interference by food or medications. As shown in this study, bedtime administration is more convenient for many patients. Clinicians should inform their patients about the possibility of taking levothyroxine at bedtime. A prolonged period of bedtime levothyroxine therapy may be required for a change in Quality of Life to occur."

[Hidden]

I would agree and say your tsh was too high and still is a bit. Anything above 3 is too high but some people feel fine at your level and others don't. Just doctors have their little tick boxes to do and if it's below 10 you are usually classed as normal. Personally I would try NDT. I use thiroyd and couldn't tolerate levo at all and I just buy it over the internet. Think it's 1000 pills for around 25 pounds. I did get hair loss with NDT but it was major with levo. As soon as my levels built up the hair loss stopped but never did with Levo. I also find that is works along side other female hormones well and doesn't tend to knock anything else out of wack and for me it was easier to get my vitamin levels up on NDT. I had terrible depression and was suicidal and that has gone. It is still important to get your vitamin levels up also and that can take a good 6 months. What works for one may not for another though. So it's trial and error. I am currently pregnant and on ndt after several miscarriages previously. I also took t3 for a while and it helped get my levels up but I did stop it as it took my t3 way over(before pregnancy). If you are converting t4 to t3 OK which you are you have to be careful it doesn't take your t3 levels sky high. Some people stop T4 meds altogether and are good on t3 only meds.

[MaxandMe in reply to Hidden]

thank you for input. Firstly I want to say how sorry I am for your losses. But big congratulations on your pregnancy, sending best wishes for a happy and healthy 9 months. I do want to try ndt, but I know my vitamins and adrenals aren't good so I feel id be causing more issues than not right now. I'm also concerned of the side effects people report, and that its prolonged when adrenals or vitamins are a problem so I'm thinking to get vitamins up first and then try ndt. But on the flip side I'm already very symptomatic so don't know what to do, I'm just so tired and fat! There's a definite increase in symptoms over the last couple tests and I see a trend of tsh increasing sligtly with t4 lowering, so I do wonder if temporarily increasing to 75mcg might help a bit. But ill try take levo at night as suggested previously to start. Did you have adrenal or vitamin problems to correct?

[Hidden in reply to MaxandMe]

Yes I had pretty much low everything vitamin wise. B12 was the main one to up though. You have to do what is correct for you and it isn't a one cap fits all solution for anyone. Good luck.

[Eddie83]

I am confused. The image of test results you put right at the start of your post: what is the date of that? The long list of TSH and FT4 results you typed isn't too useful because it's clear those tests don't reveal what is going on. However I do "believe" the AACE TSH range, which is 0.3-3.0. So I don't doubt you are hypothyroid.

You say you were diagnosed with low progesterone at one time. Progesterone is an intermediate in the path to cortisol. So you likely are (or were) cortisol deficient.

When I could not convert, I was on T3-only for over a year and it does work. In the test results at the start of your post, your FT3 is decent yet your rT3 is too high. The only way you can prove conversion is the problem, is to get off T4 and try a course of T3 therapy. Given your doctor's crappy attitude, I assume you do not have a source for T3. If you are willing to self-treat, ask one of us in a PM where to get it off the internet.

[MaxandMe in reply to Eddie83]

orry I know my post was rambly it was 3am. That test comes somewhere towards the end where I say then comes the private test that convinced Dr to give trial of levo, I will attach as too long to type out. So sorry for confusion that was the last test prior to starting levo. I developed terrible bleeding and I have never had such bleeding problems, progesterone found to be culprit, this is all same time as tsh was above 5, including thebpic of private test. Id hoped that would attach at the end but it didn't.

I was given utrogestan by gp, as progesterone low, I've been off it a while and all same symptoms are back particularly pre menstrually. Also fsh and lh were out of range. Had a private blood panel that included cortisol and that was quitevraised. I do think adrenals are off. Yes I will self medicate, I just cant go on lie this anymore.

thanks ill pm you

[Eddie83 in reply to MaxandMe]

Surprised your cortisol is high. Perhaps your progesterone is low because your adrenals are sucking it all up and there is not enough left. Nevertheless, many women (that includes my spouse) do better with a small dose of estrogen+progesterone.

Are you supplementing trace minerals? Reason I ask is that selenium is a component of the deiodinase enzymes that convert T4->T3. I still take a trace mineral supplement. Selenium at 100mcg or 200mcg daily (not more, too much is bad) might help you.

Will respond to your PM shortly.

[MaxandMe in reply to Eddie83]

I'm not really suposed totake estrogen as I have endometriosis. I'm not even taking the utrogestan as thought id be better without it and try stay off it until I can afford the hormone saliva panel, but don't know now. Id also like to have another child next few years but although utrogestans bioidentical it says mustn't have when trying or are pregnant. I'm also breastfeeding, dont know if that helps anything. It was definitely high I frget the range but 9am cortisol was raised by a good few hundred above range, it was blood cortisol though so know I need saliva, just camt afford it all at the moment. I am asthmatic and over my life Drs have abused my body with steroids especially as a child, often high dose for too long a period and no weaning down. I think I am I have a multi vit for breastfeeding/pregnant/menstruating women by lamberts ill check levels, I know it contains all trace ones.

[Eddie83 in reply to MaxandMe]

As I imagine you already know, when the thyroid drops out, the adrenals try to take up the slack by increasing cortisol. A reasonably high FT3, with low rT3, supports proper adrenal function. I also discovered that supporting blood protein levels helps my adrenals, because gluten wrecked my gut and I cannot keep my blood protein level high enough, without supplementation. Have you ever taken a look at StopTheThyroidMadness.com?

[MaxandMe]

I just want to say thank you to all who commented, I hope ive not missed any to reply to, hardto see all on my rubbish phone. Ive taken it all on board. I decided to up my thyroxine by 25mcg daily, felt a bit wired at first and horrible palpitations at night, but after about a week i notice some improvement, the biggest visually is in that short time ive lost a kg, which is rare for me! And the eczema that I was covered head to toe in that steroid cream wouldn't budge has almost cleared up, I looked awful it coverd my entire face, neck and chest in patches, I am so happy as it was so sore and I couldn't stop itching. I am still tired, but I don't have to crash back on the sofa to sleep after waking, I feel there's a tiny bit of energy back. Just enough to help me get my vitamins right and eventually I'm going to switch to ndt but at the moment I just needed go feel quickly more able, and I have hope now I will. Should I keep increasing up 100mcg which was my original dose or stick with 75mcg? Would anyone say that during periods of acute and chronic stress that your dose needs upping anyway? I do still feel a bit wired, mainly not sleeping much, but nothing compared to when the GP put me on 100mcg starting dose, yikes! Thank you everyone xx

[Kitten1978 in reply to MaxandMe]

I'm glad your are feeling better ;))

[MaxandMe in reply to Kitten1978]

hank you bit it is short lived, it seems ive got some kind of immue thing going on that may need steroids, so feeling rotten, don't know If rise in levo caused it am covered head to toe in nasty rash with severe joint pain x

[Kitten1978 in reply to MaxandMe]

I'm so sorry ;(( I don't know much about levo as I'm taking T3-only but I wonder whether it could be an allergic reaction to fillers. There are four brands of thyroxine available in the UK:

thyroiduk.org.uk/tuk/treatm...

Maybe a different thyroxine brand would suit you better? It maybe worth mentioning it in a different post to see what other HU members think.

I hope the rash and join pain will soon disappear and you will feel much better.

Take care

Kitten1978