Latest Test Results - Where do I go from here?

[FancyPants54]

Hello

I've been plodding on, testing, increasing Levo, testing, working on vitamins and minerals, testing, increasing Levo.....

It's been ridiculously hard to get my bloods to move, but I finally have scraped the TSH into the reference range. I feel better in my head, most of the time, but I'm exhausted still, no energy to my legs at all, I can barely walk any distance and when I try to walk I'm so slow. My muscles are weak and sometimes I find it difficult to breath as well. I just have no energy to live life with.

I get my Levo from the GP. So far, this year, I've basically told them what I want and I've got it. Not sure that will carry on much longer now that TSH is in range and T4 is getting closer to the top of the range.

I have a private hormone doctor for menopause, she has given me a prescription for T3. Obviously I will have to pay for it. I also tried Nature Throid last Christmas from a prescription from her. But I had a terrible time with it. I think now that we know there are issues with this brand, my issues were probably because it was under-powered and reduced my levels not matched or bettered them. I'm nervous of what to do next.

Should I keep going with Levo raises? I've increased today by half of a 25mcg tablet. Or should I try adding in some T3? If so, how much? I can get 5mcg tablets or 10mcg capsules. I would probably prefer to start with the 5mcg.

Any thoughts and guidance from combination Levo/T3, T3 only or NDT users would be much appreciated at this nervous time.

My blood tests are arranged as early as I can get them, usually around 8.30am. I fast and drink only water before them and never take meds for the recommended 24hr period before the test.

Blue Horizon Test Results - 15th November 2018 (Levothyroxine dosage - 125mcg a day)

TSH - 4.04 (0.27 - 4.2 mIU/L)

Free T4 - 18.5 (12.0 - 22.0 pmol/L)

Free T3 4.1 (3.1 - 6.8 pmol/L)

[SeasideSusie Remembering]

FancyPants54

With those results, I would look at adding T3. Your FT4 is 65% through it's range, your FT3 is only 27% through range, so conversion is poor. I would leave Levo at it's current dose and add T3 starting with 5mcg and see how that goes.

When retesting once T3 has been added, still leave Levo off for 24 hours, and leave T3 off for 12 hours.

[FancyPants54 in reply to SeasideSusie]

I'm wondering if I should do one more dose increase to 150 Levo first. But do you think that is unnecessary and I could start adding T3 now?

[SeasideSusie Remembering in reply to FancyPants54]

You could try increasing Levo, it should bring your TSH down, it should increase your FT4 and it should increase your FT3 but I still think your conversion will be poor.

Are your vitamins and minerals at optimal levels now? Your ferritin was very low.

Are you taking selenium every day now?

[FancyPants54 in reply to SeasideSusie]

Ferritin had improved a lot, thanks to your help. I didn't retest it this time. I'm aware of it now so will keep eating the right foods.

I forget the selenium. I have tried harder to remember it recently. It's a liquid that has to live in the fridge. So easy to forget it. Do you know of a decent tablet version?

A bit of T3 might help improve my digestive process I suppose, and allow me to extract more of the vitamins and minerals I regularly eat or take.

Just so nervous of getting it wrong and making myself even worse.

[SeasideSusie Remembering in reply to FancyPants54]

This is the selenium I like, it's a very small tablet and has no odour

cytoplan.co.uk/selenium

[FancyPants54 in reply to SeasideSusie]

Thank you! I will get some of that. Then I can keep it with the other vitamins I take and won't be so likely to forget it. Only the vitamin D + K2 liquid in the fridge then. For some reason I seem to remember that more regularly. But not as reliable as the tablets that are all in one place.

[greygoose in reply to FancyPants54]

If you increase your levo again, you could make your conversion worse, because it will be converting to more rT3 than T3. What you need to do is reduce your levo slightly and add in T3.

[FancyPants54 in reply to greygoose]

Oh! I'm scared to reduce it. SSS suggests adding 5mcg into the 125 Levo dose that this blood test was conducted on. Would you not do that? I'm so nervous of this next move.

[FancyPants54 in reply to FancyPants54]

Should have said T4 is 64% in range, so that seems about right, or a little low to me. I thought we aimed to have them in the upper part of the reference range, possibly the top third.

[greygoose in reply to FancyPants54]

Well, you could do that - your FT4 level will go down anyway when you add in T3. But 5 mcg should adequately compensate for a reduction of 25 mcg levo in someone who doesn't convert well. What are you scared of?

[FancyPants54 in reply to greygoose]

I've been ill for 6 years. Struggling to keep my business going. Getting slower and fatter and more withdrawn from life. I've tried NDT through Dr P. but although it worked at first I ran into problems when he was in hospital and very poorly so I had no help with the problems and ended up weaning off everything. I actually wonder if I were just over medicated now, on both NDT and adrenal glandular, but I know how awful that feeling is and how debilitating. Then after a time I tried T3 only but again I think I became over medicated. I followed Paul Robinson's recovering with T3 method. But my signs and symptoms never actually changed and so I didn't see that I was overmedicated until it came to a head and I had to wean off. I've never had a GP willing to help at all. I saw a private endo. who dismissed my thyroid completely.

Then last year my HRT private hormone doctor put me on Levo because my thyroid was over the top of the reference range and I was struggling. At first the Levo at low doses pushed my TSH up to over 10. Then very slowly it has come down this year. Really slowly. This is actually the biggest drop and change in T4 levels I've seen to date.

So that's why I'm scared. I've had enough of that awful anxiety that comes with too much T3 or something else being wrong when taking it. I had so hoped Levo alone would sort me out. But I'm 17 months in now and not feeling any more energy.

[FancyPants54 in reply to FancyPants54]

Also, I tried Nature Throid last Christmas. I replaced my Levo with 1/2 grain as advised by the private doctor but after a lovely feeling first day I got more and more anxious and stressed and off-kilter. I stuck it for a month but I felt awful on it. Since then I've realised there are issues with that brand from around that time. I'm wondering if I actually reduced by dose by accident by using what should have been an equivalent. My hair fell out not long after that and when I went back to 25 Levo I felt better instantly.

[greygoose in reply to FancyPants54]

But, didn't you try increasing it? Nothing will help if you don't take enough of it.

NDT made my hair fall out, too. It doesn't suit everyone.

[FancyPants54 in reply to greygoose]

I didn't because I thought I was over medicated on it. I do now wonder if it were the other way...

[greygoose in reply to FancyPants54]

Did you not have any labs done?

[FancyPants54 in reply to greygoose]

Not on the NDT no, because I couldn't stand it long enough. I was so brain fogged and jittery and anxious and ill that I couldn't think straight.

I felt immediate relief of the anxiety and jitters when I went back onto 25 of Levo. Then the private doctor who had prescribed it got cold feet because she said I should not have reacted like that and told me to come off all thyroid meds and retest in 3 months. I tried to follow her weaning process but it was just awful and so I went back to slowly increasing the Levo dose. Little wonder my hair fell out! The doctor might have been caught out by the problems with Nature Throid that came to light about that time. She thought she was giving me an equivalent dose, but if it were under powered that would have explained the way I felt as I had a sudden drop in hormone and I was barely on any anyway so it created a big impact.

If I could have thought straight at the time, I should have increased the dose of NDT, not stuck on the half grain. But I couldn't think and it scared me. I had to cancel Christmas I was in such a state.

I do still have the bottle of NDT. If the T3 added to Levo helps, I might be tempted at some point to try NDT again. But sources seem scarce and difficult at the moment. This T3 will cost me more, but give me a UK available private source that will allow me to try it easily.

The private doctor who says I now need to add T3 has suggested 10mcg a day with the levo. But I'm thinking I'll start with just 5mcg and see how I feel. Do you think that's a good idea? That 10 in one go with the Levo might be too much to begin with?

[greygoose in reply to FancyPants54]

I do think 10 mcg would be too much to start with, yes. Try 5 and see how you go. After two weeks you can increase by another 5 if you want to.

[FancyPants54 in reply to greygoose]

You and Seaside Susie are a godsend for T3 advice. Thank you both (although I don't know how to tag Susie so that she sees this).

[greygoose in reply to FancyPants54]

You put @ in front of her name, and then click on her name in the menu that pops up. SeasideSusie . And the name will turn blue.

[helvella in reply to greygoose]

There is a HealthUnlocked mini-help topic - including a moving "screenshot":

support.healthunlocked.com/...

[FancyPants54 in reply to helvella]

Brilliant. Just like Twitter then. Why didn't I think to try that!

[Mitch27 in reply to FancyPants54]

Hi miss fancy pants😁 sorry to hear you've had such an awful time but on reading your story mine is pretty similar. I'm on NDT now as I tried t3 and didn't seem to do well on it.. worked great for one month then nothing .. tried increasing but also very jittery. So I eventually stopped

Endo said had to go back on Levo as my tsh was 53. I begrudgingly went back on it but stopped after 1 month as felt like shite again..hair fell out and put yet more weight on! He then basically dismissed me as wasn't interested in hearing about NDT. I've been on NDT for about 3 months now but as you say all I feel is jittery and anxious.. so I reduced dose and added t3.. so far not feeling any better. My doc just tested tsh but not free t3 or t4 to which I'm going back to get tested. My vitamins not too bad but I do take vit d supplement as tgat was very low. I'm sooooo frustrated as I was really hoping ndt would be my saviour. I have the same crappy feeling about walking... I'm 51 but feel.70!! I just want to wake up and feel normal... and thin again 😂

[FancyPants54 in reply to Mitch27]

Hi. Your story isn't really like mine as I've never tried NDT with T3, which I imagine could give you very high levels of T3 if you were not careful.

It sounds like you could do with some help yourself and some guidance or a plan. You should copy what you have written here and make a brand new post of your own asking for help. You will need to provide whatever test results (with reference ranges) that you have had along the way and details of the levels of Levo, NDT and T3 that you have tried. If you create your own post, you will get your own set of specific replies. Buried down here in my post you won't get any help for yourself and it does sound like you need some.

Good luck with it. It can be hard, but not impossible.

[Mitch27 in reply to FancyPants54]

Hi .. thanks .. I'm well aware of how the posts work on here .. I was just saying I felt similar to yourself as you said you tried NDT and it didn't work for you.. same as I experienced hence I'm only now trying the combo. I wasn't looking for advice just merely empathising. I have received plenty help on this forum when I have requested it as everyone is very well informed

[FancyPants54 in reply to Mitch27]

Sorry, I misunderstood. I should say that I used Armour and then WP Thyroid much more successfully a number of years ago. It was the Nature Thryoid that did for me last Christmas. I could have been on too low a dose. I thought it was an over stimulation, but symptoms can be very similar and it’s hard to believe that 1/2 grain could do that. Everyday I took it I felt rubbish all day but better in the evening. Much as I had felt when I was on too little Levo actually.

I hope you find your way out of your hole soon. Odd that the T3 worked for 3 months then stopped. Could it have been a dodgy batch?

[Mitch27 in reply to FancyPants54]

No worries.. hopefully we'll both find the magic dose/doses to make us normal again. When I told my daughter I find it hard to walk a distance sometimes.. as in physically like my legs don't want to work .. she doesn't understand how I can feel like that... it's a very complicated disease this Hashimoto but the doctors think most of our symptoms are in our head as the TSH is "fine" ... argh ...😤😤😤 anyhoo... hope you get sorted and I'm going to invest in some selenium as well.😁

[FancyPants54 in reply to Mitch27]

The leg thing is awful isn't it. It's one of my worst symptoms. I just can't walk any distance or at any speed. They just won't go! I used to walk and cycle miles. No one understands it other than my husband. We went out to Birmingham around 10 days ago. We caught the train in and had to walk to the Symphony Hall. I don't actually know how I got there. I walked so slowly, had to keep resting, and nearly cried with the frustration and fear of it all.

It's a year now since I had my last day of good energy. I had been feeling terrible, worse than now in my head. I had driven us up to Scarborough where my MiL was in a home. All the way up I felt so depressed and exhausted. When we got there she said "You've put a lot of weight on!" in her usual sympathetic way. I felt so rough the next morning when I woke and felt better again (that was my pattern back then) I thought "sod it" and didn't take the tablet. It was just the best day. I was full of energy. It was freezing, blowing a gale and my husband was developing a cold but I just wanted to walk and walk, with pace and form. I dragged him around the sea front and cliff walks. I was laughing with the pleasure of it all.

I have no idea why that happens. Next 2 days I didn't take it either and got steadily more and more anxious and upset until I gave in and too it again. A whole year since I felt alive. This is a horrible illness. And all my GP and even the pharmacist says is "you must exercise and loose weight"! I want to kill them.

[Mitch27 in reply to FancyPants54]

I understand that fully. I have been cabin crew for 6 years now ..I fly all over the world and see many places..and in the beginning I was all agusto.. walking everywhere ... now I hardly leave my hotel room. It's an effort to walk 2 blocks to get food!!!! I feel embarrassed enough in uniform always thinking what others are thinking of me .. gone are the days they were young and slim...😉 it's awful ...and before this crap hit me I was one of those ridiculously skinny people who looked at fatter people ..never believing any that said they couldn't understand how they put on weight as I believed they were secret eaters...and now the show of is on the other foot. I don't hear I put on weight.. I eat I put on weight !! So sick of it. And my husband is from a family that think Anyone overweight is a,waste of time !! So loving.!! So I understand your Mil issue 🤔 when I get depressed about my weight the doc says go for cognitive behavioural therapy .. like really!!!! So I did .. and after a few weeks the result was there is nothing wrong with my head! To find a doctor who believes us would be a bloody miracle !!!!

[greygoose in reply to FancyPants54]

That's because you're not converting it very well. And, if you can't convert it, there's no point in taking loads of it. But, if you're scared of reducing the levo, don't reduce it. Just add in the T3.

[Hidden]

Brilliant news that you've seen a tiny improvement but clearly it's not nearly enough - bloods and symptoms wise.

I'm sure others who are a tad more experienced than me will give you some helpful thoughts about the way to go and adding T3, but I would say your TSH is still way too high for a treated person (around 1 or below or where you feel well) and both your frees are too low - especially FT3, but I'm sure you know this already, so just a confirmation really.

In your shoes i.e at 125 mcg levo I was inclined to add more levo - to go as far as I could before it confirmed that mono T4 wasn't enough. For me that was 150 with less than half way FT3, with a mildly suppressed TSH - then I added Metavive and reduced levo. It works mostly well for me, but we are all so very different - maybe there's another NDT you could try?

One other thing is to keep up with nutrient supplements (sorry for the broken record), I've let my iron fall and I really know it, trying to get that back up despite everything else being ok.

Best wishes that the progress continues, even if it's baby steps x

[FancyPants54 in reply to Hidden]

To be honest, I'm very reluctant to try any medications that I can't get out of a pharmacy here in the UK at the moment (albeit a private one for the T3) because importing medications could get very difficult and stressful next March. But thank you for your thoughts on the rest of it too. What is Metavive? Is it one of those "supplements" that are not supposed to contain any T3, but just might have a bit in there?

[silverfox7]

I Think trying many things as added to your confusion and stress so read carefully throughball the helpful posts and find one that sounds easily doable and stick with it. I'm not saying that should stick with it if it's not helping but keep going and ask questions about it, say what you are doing, any labs you have andchowxyou are feeling plus any side effects that you are experiencing. Repliesare often quick and I'm sure will help you get back on track. That willaldo help you to understand the problem and how your body has reacted toit so it's also helping your learning curve as well. If after loads of advice and tweaking it's decided that it's not for you then may be a different approach may be needed but I think sticking to and correcting any problems will help your confidence.

[FancyPants54 in reply to silverfox7]

Thank you.

I know it looks a lot written down like that, but it was all over a long period of time. Many years. So not all at once. The last drastic change was almost a year ago when I tried the Nature Throid for a month. I've just been trying to improve things with Levo. and optimising vitamins and minerals since then. But it is looking like I need some T3 in the mix somehow as the gap between T4 and T3 has grown quite a bit wider in the past 2.5 months and I have zero energy to my muscles or stamina for physical tasks.

I'm going to get hold of some T3 and try that with the Levo. See how that feels.

[waveylines]

The best advice I was given was to change ONE thing at a time & give plenty of time between changes. Go very slowly!! It was hard to do as the desperation just makes you want to make changes far more quickly. It doesnt work like that as your body takes ages to adjust & going quicker means you keep missing your sweet spot which is the dose thats just right for you....not too much & not too little. It sounds like the day that you stopped the levo you had shot passed your sweet spot & by stopping for a bit of time you hit it. Its not easy to find the right balance that suits you but it can be done & once you hit it its much easier to maintain. Its a case of the tortoise that wins the race.....

The other thing Ive found is that whilst most ndts have the same ratio of active ingredients in them how you react to each one can be completely different. This is why people have different preferences for different ndts. I was told by a pharmacist that this could be because of the fillers, the way the tablet is pressed or the conversion/release mechanism in the tablet. Your body is unique & will react in different ways. Having said that the latest form of Naturethroid has clearly got a big problem!! Lol.... So I tried a few ndts before I found one that suited me........probably why many of us get agitated when our favoured ndt hits stock production problems or they change their formula!!!

I kept a very careful log of everything I took each day (thyroid meds & vits), my symptoms, level of energy/how I felt, blood pressure, pulse & temperature alongside blood test results. Its useful to look back on as you can spot patterns & trends that you often miss day to day. Its tedious but well worth it. I dont keep such a record now as am well established on my preferred ndt & know the range of dose my body needs allowing for winter/temp drops & heatwaves!

As far as doctors are concerned I didnt find many of much help tbh.....most were pretty ignorant or rigid. Only Dr S really helped me......may he rest in peace. Greatly missed.

Wishing you the best & hope you find the right combo for you & hit that elusive sweet spot. Xx