So, having continued to suffer sudden unexplained falling backwards on various doses of t4, and combos of t4 and Erfa, and then severe anxiety and shortness of breath on 100 levo + 2 doses 7.5 t3, I was forced to go back to levo only, as NHS refused to help me unless I did so.
On 125 levo, I still felt and looked very hypo on 125 a lot of the time and due to TSH levels, NHS allowed me to increase dose.
(results above were taken privately by me just before starting 150 daily [R means randox and M means Medichecks, hence slightly different ranges]. I realise levels of t4 were quite high then too, but because of ongoing symptoms and NHS approval decided to continue with trial of higher dose)
I was feeling much better on 150 psychologically and had loads fewer incidences of slurring of words and brain fog; haven't had falling episode for a while now 👏👏👏 . However, my calves are always very swollen, feet and legs icy cold in morning, become more and more swollen as day continues. Weight gain is still relentless.
Another complication is that I am now also officially menopausal.
In response to the above test results on 150 levo, with excessive t4 levels, I decreased the dose to alternate day 132.5/150 (was planning to drop more, but thought I’d titrate down slowly as per Buddy195 approach, as the falling episodes seem much more likely to occur after a dose change).
Since dropping dose (which has only been about 8 days, so way too early to do another blood test) I have almost permanent excruciating pain in my lower legs and intermittently in my lower back. Before that was only coming at end of day.
Also, at same time as dose decrease, I reintroduced various vitamins (inc. B12 sublingual, vit D, Iron and a high strength vit B complete).
Questions:
1. Was I right to reduce dose?
2. Do you think the high t4/low TSH is the cause of my swollen painful calves
3. Should I stop levo for a day or 2 as per jimh111 and go back on lower dose?
4. Go back to 150, but split dose to try to improve conversion and increase tsh?
4. What dose should I go for 150/125?
5. Should I drop t4 more and replace with a tiny bit of t3 and if so, how?
6. Should I reintroduce HRT?
TIA peeps and sorry for so many questions 😬
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woofa27
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It's been right old mishmash of almus, accord and wockhardt.
Yeah autoimmune, but have found it interesting that levels have dropped since tsh has gone down and also that they increase post dose.
I have tried both gluten free and dairy free, but each only briefly, as have been struggling just getting through each day. Although on 150 dose, I have felt so much better mentally most days, though still struggling with a lot of physical symptoms. The pain has become greater since dropping the dose slightly.
I do plan on giving gluten and dairy free again another try in new year.
I am now supplementing again with vitamin D.
• Do you think the low vit D could be contributing to my current symptoms?
• Am I right to drop my dose?
• Should I drop t4 and add a small amount of T3 (I have been on t4 only for 6 months now but I do have some thybon henning liothyronine? And feel the ratios are always off on t4)
Morning temp still only between 35.95 - 36, though was slightly higher when taking t3.
In particular I haven't managed to understand what happened on the HRT front. I think an awful lot of members know more than I do about how that affects thyroid.
Hehe, sorry to sweep through your questions. Sorry you haven't had many replies before. In answer to a few of your questions:
Could Vitamin D deficiency be causing symptoms?
Yes, all the vitamin deficiencies regularly discussed on the forum cause symptoms. And they also cause thyroid hormone to work less well. Difficulty managing on T3 is one of the things that can be caused by poor vitamins, and looking at your results in general I think working towards reintroducing T3 is one of the most promising options available to you, so I would work on Vitamin D as top priority.
It is also one of the simplest to treat. Grab yourself a bottle of Thorne research Vitamin D with K included. Quite expensive but there is loads in the bottle. Find a regimen that starts with high loading doses, and progresses to a nice high daily dose, and start taking it daily. You will almost certainly get some initial quick progress. Personally I have found sun exposure has raised my Vitamin D levels much more than supplements, but mainly only in Summer, so try to plan that in, too. If budget allows a sunshine holiday ASAP. If not try to get access to a place you can sunbath once it warms up, and to dedicate some time to it (one good thing about not being well enough to work :p).
Considering gluten and dairy free. My advice would be to start with gluten free, and consider trying dairy free in several months or even years, once you are settled on gluten free. Take the path of least resistance, and ease into it gently. For example, it is more worth it to phase things like bread and cereal out of your diet gradually, by finding alternatives you can live with and enjoy, and not go fully gluten free until you're well prepared. It's common to need 6 months or more of gluten free to be sure whether it's helping, and to be 100% sure it's NOT helping you need to give it even longer. Don't rely on 'gluten free' over-processed foods, change over to things that are naturally gluten free and great, such as porridge, rice noodles, jacket potatoes or sweet potatoes (good alternative to 'on toast' type meals in my view. Microwaved and then fried in a patty sweet potato makes an outstanding avocado toast.), almond flour and high egg recipes for baking, etc.
1. Was I right to reduce dose?
Yes, I think you were right, as more information is always good, and you are searching for your ideal dose.
I think the information you got was good quality. It sounds like you can very clearly say that 150mcg is better for you than 125mcg, and you can point to some fairly cut and dry symptoms to demonstrate that, and you can even say that 150/132.5mcg is worse. This is a brilliant situation to be in. Personally, during my own search for the right dose I have rarely ever been that clear.
If it would be possible for you to do so, I would still stay on your current dose for 6 weeks if possible and take a blood test. Because there is a chance these symptoms might settle down in the time. In my view, after 8 days nothing is conclusive, because it may just be the shock of the changed dose that has caused the symptoms, not the stable blood stream levels this dose gives you. If you get up 6 weeks and still feel bad, this is an excellent line in the sand and you are very much closing in on your ideal dose.
150/135mcg is a minuscule dose change, 7.5mcg per day, less than a third of the usual standard dose change of 25mcg. So it is 'good' if you can feel that difference, as it gives you a clue where to go next.
In general, symptoms are more important than blood tests. And it is actually pretty common to require over range freeT4 while on T4-only. That's just how bodies work, it is not easy to convert enough freeT3 from a smaller amount of Levo. Yours is 4 units over, which is close to half the range in size, so that is a failr significant amount over.
In some ways, it is a judgement call whether to accept that. Yes, it may be bad for your health. I think there are probably only a handful of people on the planet who could give you a really decent evaluation of how bad that is. Like is it as bad as being a smoker? Or not exercising? Or having genetic predispositions to common illness? Or being reckless when crossing the road? Or some of the other medications you may be taking like HRT? Who knows, I am not one of those few people who could tell you 🤣
But personally, if it was my health I'd likely risk it. For you it would be a unique judgement based on how sick you are and how much better you feel on this dose.
That is only step one in consideration, because probably you want to feel better than you do on 150 mcg, too.
But you are at their point where you gave probably exhausted how much Levo can help you, and it is time to look into other things.
Definitely improving your vitamins will help. And you should certainly do that, and it will almost certainly give you a boost in symptoms.
You might also look into adrenal fatigue and treat that. This used to be talked about on the forum loads, and maybe isn't as much anymore? But it is definitely an avenue worth looking into, and can be done alongside adjusting thyroid dose and improving vitamins, as they all help and improve each other.
Though as always the advice is to only change one thing at a time and see how you do on that before changing the next thing. This works well because it is also usually the easiest way to take on the work while we are unwell.
I particularly mention adrenal fatigue to you, because that is said to be one of the reasons introducing T3 doesn't work, so improving the adrenals is probably the best route to introducing T3. But I would still have mentioned it if you g sny said that.
And I will say to you, I think the biggest and most likely avenue for real improvement is to introduce some T3. This could be in the form of synthetic T3 tablets, NDT, or over the counter products like Metavive. And this is just because it's the only real thyroid intervention to do once you have exhausted what T4 alone can do for you.
Looking at your results, your freeT3 is not terrible terrible. You only have a little bit of wriggle room to introduce T3. It does make me wonder if your freeT3 could have been over range been you struggled to take it in the past? But anyway, the top of the range is there for a reason, and it is definitely worth exploring.
I'm sorry, I haven't gone back to read your full history, so you probably had a reason for trying 100mcg of Erfa plus 7.5mcg and 7.5mcg of T3. But looking at your current dose and situation, that seems a fairly large dose of T3 to introduce in one go.
You can definitely try a much small dose, like 3.75mcg of T3 if you can cut that small (or grind it into powder and divide out tiny doses). And reduce by a matching amount of Levo, like 4-5 x the mcg.
It's possible you'll do completely fine on a much smaller dose and not need to do any additional work to introduce it. If you do struggle, I would suggest cutting up to an even tinier dose, and only increase once you are well settled on that.
If you can't manage on much lower doses, you need to wait until your other 'ducks are in a row', in terms of good vitamin levels, adrenals, and any other health areas you might want to treat. Basically, the better your overall health is, in all respects, the more likely you are to tolerate T3 in some form.
I also think some kind of animal thyroid is something you should consider. Because animal thyroid has chemicals in it synthetics do not. And that makes it a bit more effective for people who struggle to get well on thyroid hormone. Effectively, it is just one more thing you can try, that may end up helping you. These contain both T4 and T3. So you would still be introducing T3. You may find it easier to get hold of super low T3 doses in NDT tablets, as a whole grain is only 9mcg of T3.
I think with where you are you have possibly got to that point where there isn't an obvious answer. It is about choosing from a range of viable options what next step you want to try.
Wow, Silver Avocado, thank you for taking the time to give me such an incredibly detailed response to my post. In fact, it wasn't 100 Erfa, it was 100 levo + 2 doses of 7.5 t3, but I did feel the size of the hits of t3 in synthetic format was too much for me.
I'm going to do my best to work on some of your suggestions. I like the idea of gradually working towards the dietary changes and am definitely going to work on a loading vit d dosing schedule, followed by a sound maintenance dose.
[Looking back on my nhs app. when they put me onto 100 levo (reduced from 125), my tsh went up to 7.1 (0.27-4.2) and my t4 was still coming in at 16.7, no t3 results (of course), but it really does feel that my body can only really make the t3 my brain wants with slightly bonkers levels of t4.] For the first time in a very very long time, I felt happy, anxiety free and my brain function was soo much better, but physically the painful swollen legs at times and rapid heartbeat on exertion, totally suggest to me the balance, as per usual on t4 only was off.
I have continued on the 150/137.5 of levo and am feeling pretty appalling at week 6/7ish. I'm still going to carry on until the 8 week mark and then retest, not sure I want to continue much longer than that. Kind of depends on the results, but I'm getting a lot of headaches, brain fog, fatigue, lack of sleep, backache and painful blue legs in morning, major irritability, which would suggest it isn't likely to be my dose - it's the usual mix of hyper and hypo that I get on, well, pretty much any kind of thyroid medication.
I do find myself wondering if I were to split the levo into 2 or 3 smaller hits and then possibly, at a later date, add in a teeny weeny bit of t3 if I feel the need, that might be the way to go. And as you say, if I used erfa to give me the mini hits of t3, this might suit me better than synthetic...
...But one step at a time, blood tests first.
Thank you so much for all the input, you're very kind : )
I agree with you that the T3 in NDT might be easier to tolerate, as it is already bound with other proteins. A bit more similar to our own naturally circulating T3.
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