If thyroid blood results look pretty damn good (as mine do below) on Levo, this means I should be feeling at least better? Symptoms alleviated? It’s my walking and increasing stiffness in legs and shoulders which is the issue.
For instance, yesterday evening, walking (trudging) felt SO difficult - heavy, painful legs, unsteady walking, miserable. I just want to cry I’m so disappointed because I kept thinking once I get my levels right this would go, not get worse.
So my question is can test results look good but symptoms continue because for some reason Levo is the problem? Or do people switch from Levo purely because they’re not converting (as seen on blood tests)? I’m converting well.
I really hope my question makes sense!
On100 Levo for 8 weeks now:
** TSH X 0.08 (Range: 0.27 - 4.2)
Free T3 5.5 (Range: 3.1 - 6.8)
Free Thyroxine 18.0 (Range: 12 - 22)
Thank you all am very confused now.
Jo x
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Josephineinamachine
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I look forward to reading replies here as I feel the same as you. I guess some may say you could have a small dose increase and that might help - I've read people want to be over 6 on T3. You could try 112.5 or poss 125?
I'm taking 100 Levo and 25 T3 and my results are similar and feel I can barely walk. Nothing on mri or X-rays. Am also wondering if I should switch to T3 only or ndt.
Hi JAmanda so frustrating isn’t it? Was really hoping, as I’m sure everyone is, to reach a point where the symptoms just simply disappeared. Really expecting it even. I’ve just read DippyDame ’s response below, and profile. Have you read this? Maybe T3 only is the way to go? Do you have an Endo? x
Actually I just ordered some T3 online. Someone on here said the site was ok. We'll see. I'm going to post on here for advice on how to transfer from t4 T3 combo to just T3.
I'm ok, sleeping well, hip pain gone but foot pain is rotten snd dry eyes.
So I might do a little experiment in the six months till I'm going to see my Endo.
Looking at your results again above I think you're converting perfectly - you're 60-65 % through ranges by my calculation. I'd go for a dose increase of Levo and see how it goes.
I'm not going to be much help I'm afraid. I moved to levo/lio combo purely and simply because I don't convert well - and have been very happy ever since.
As your results are pretty good, suggesting the dose is ok, have you tried different brands of levo to see if there's one that suits better? If you've got a good local pharmacist (my local superdrug is fab) they may be willing to try you on different brands and even be interested in the outcome
Hi fuchsia-pink that could be an issue? I’ve had every brand going I think!! I started on Teva and for about a week I felt like 20 years had dropped away. It only lasted a week... maybe I’ll try that again. I know lots don’t get on with it but it seemed okay. Thank you x
FT3 measures the hormone in the blood where it remains inactive, before it can become active it has to travel to the nuclei of the cells via T3 receptorsA minority of thyroid patients have a form of Thyroid Hormone Resistance (RTH)which prevents T3 reaching the cells in adequate amounts....they have low cellular T3 and feel unwell. Very unwell!!
In order to overcome this resistance a supraphysiological dose of T3 is required, this acts like a " battering ram" and helps push/ enable at least some of the dose to reach the cells. The remainder is eventually excreted from the serum. A difficult situation because there are as yet no tests to measure cellular T3. It becomes trial and error, with very careful monitoring, there is no quick fix ( think paracetamol/ headache!) but RTH can be overcome.
Your FT4 is 60% through the reference range.
Your FT3 is high at 86% through ....
Your conversion is clearly fine ( high FT4 with low FT3 = poor conversion) so not the problem
So, we question why your FT3 is high, it should be closer to 75% though these figures vary with the individual. If you feel well that is probably fine, but if you do not feel well...it looks as if the T3 is not able to effectively move from the serum into the cells/ tissues. This is sometimes called Tissue Hypothyroidism
I'm one of these patients, there are a few of us on the forum who have discovered this but probably more who have not!! It took me over 3 years to find out why my health had slowly deteriorated over decades until I could barely function. I had been prescribed LT4 for 20 years and never felt well but nobody know why! I eventually discovered this after I joined this forum, had excellent support here, and read extensively.
The work of the late Dr John Lowe proved invaluable to me, he was a T3 expert. This article gives an overview of low T3 which you may find helpful.
I found Hugh Hamilton's ebook helpful, it is easy to read and well referenced and I found it an excellent starting point. It is on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
I can only refer to my own experience and what I've learned along a very long, bumpy, sometimes lonely and worrying journey....but I did in time reach the end....I'm not a medic.
My profile explains my thyroid journey.
Hopefully something here resonates with you and suggests a way forward.
Dear DippyDame thank you so much. I’ve read your beautifully written profile now. I’m sorry you’ve had such a journey, but thank you so much for sharing it, and your wisdom. I have heard of T3 not reaching cells (vaguely) but will now look into this for sure. I have purchased T3 (had it for a while) but haven’t wanted to try it - and was really hoping I wouldn’t need to as well. If I did try going down that route would you recommend I try a private Endo (thyroid friendly) so that I have medical support? I see many people strike out on their own but I’m not sure I have that courage...and I’m really quite new to all of this.
You're welcome Josephineinamachine ...love the name!
I think you have to be confident that taking T3-only is your last resort, and be comfortable with that decision.
I honestly cannot advise about endos, private or NHS...I saw one endo twice then left unconvinced that he could, or would, help me. It may be wise to pursue this possibility first.
I would have preferred to have the safety net of the NHS but it clearly wasn't going to be available....you may hopefully have better luck.
I have no idea what will happen to me regarding T3 medication if I end up in hospital or in a nursing home so, I'm considering writing a statement to be included in my medical notes...if my current GP will agree to this. She knows that I self medicate and concedes that a degree of patient autonomy has to be accepted by medics.
It's important to learn as much as possible because the old adage " Knowledge is power" holds sway.
The words of Bob Marley, "You never know how strong you are until being strong is your only option", helped keep me going....as did my husband.
It has to be your decision, always bearing in mind that T3 is a powerful hormone that must be respected and that careful monitoring of heart rate, basal temperature, signs and symptoms is vital to avoid overmedication.
I'm happy with the choice I made....for me the long, tough journey was worth it!
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