After having a thyroidectomy over 30 years ago I have been feeling well and energetic taking only levothyroxine. It has never been an issue but now my TSH has started to fall and my new doctor has reduced my levothyroxine and I have started to have symptoms of hypothyroidism. Achy, painful legs and little energy.
I posted on here a few weeks ago my latest blood test results which showed my t4 to t3 conversion was not good and was advised that maybe a trial of t3 would help with symptoms. I have an appointment with endocrinologist coming up so am hoping he will put me on a trial, though not particularly hopeful.
My question is that should he refuse the trial but is willing to increase my levothyroxine despite low TSH do you think that as before I can be well on just levothyroxine? Reading posts on this forum it seems that nearly everyone says that you need t3 to get to optimal fitness and well being?
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Min789
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People on here are great at helping you to tackle your hypothyroidism problems but it would be helpful if you could post your blood test results with their ranges as the more knowledgable members can see whether you are optimally medicated or not.
Like this:
for example TSH 1.3 range (0.5-4.5)
T4 15.3 (12-22) etc...
Many doctors seem to want to treat hypothyroidism by looking at the TSH alone when really we need to know where in the range we are with T4 and T3 and look at those in conjunction with our symptoms, it also helps if you have the following vits/minerals tested as they can help us to utilise the thyroid hormones and can also give rise to similar symptoms to hypothyroidism if they are low or deficient.
B12, Vitamin D, ferritin , folate, I think there may be more but I can't remember off the top of my head. Someone will be along to help you soon I'm sure.
I meant to add that I have recently started taking T3, as I wasn't feeling much better on just levothyroxine. I was advised on two occasions by endocrinologists to buy my own off the internet and self treat as they were no longer allowed to prescribe it on the NHS despite having all the blood tests that showed I was a poor convertor.
It was suggested that many more options would be available if I saw an endocrinologist privately, which infuriated me even more!
I have managed to obtain some T3 and although it is early days I am starting to feel human again. Good luck
Well, it's a difficult to answer because some endo's are slaves to keeping the TSH in range whilst others acknowledge a suppressed or low TSH isn't an issue, especially since you are now without a thyroid.
Since you were well on the higher dose of Levothyroxine it just might be worth asking that he reinstates your original dose of Levothyroxine, and instructs your doctor accordingly. This is the easiest and cheapest solution to your current issues, and personally can't understand why your doctor did not do this for you.
If the endo suggests adding some T3 into the mix, this will suppress your TSH and then your doctor will be concerned about TSH all over again, as well as being concerned about who's paying the vastly expensive price hike this additional, little thyroid hormone now commands.
Many patients who had been well on T3 for years, have had this part of their prescription removed over the past few years, with the suggestion that they switch to a higher dose of T4. causing unnecessary, additional health issues for many patients.
I was refused a trial of T3 in early 2018 because of my suppressed TSH - I am with Graves Disease and had radioactive iodine thyroid ablation, rendering my hypothyroid, with thyroid eye disease and ongoing lingering symptoms of Graves.
I am now self medicating and buying my own thyroid hormone replacements and getting my life back by myself.
Bear in mind that the majority of people on this forum are here because they are having problems. They are a minority as most are doing fine on levo and do not need to find help.I found the forum when first diagnosed to gain knowledge of the disease but amOK on levo. You were OK for 30 years. It is odd that a possible conversion problem has just become apparent.
Hello Treepie, back in March last year my T4 was 21.3 (10-19.8) and my T3 was 5.3 (3.5-6.5) and I felt well enough but TSH was 0.03 and doctor wasn't happy with that so reduced my thyroxine from 150mcg to 100 on two days and 125 for five days. Recent results showed my TSH 0.19 t4 15.6 and t3 3.8. So TSH better but I have started to feel unwell with achy legs, no motivation etc. He has referred me to an endo and has requested a trial of T3 as he doesn't like to increase levothyroxine as TSH so low. Unlikely I will get that so really hoping endocrinologist will give permission to my doctor to increase levothyroxine. Fed up as my previous doctor always went on how I feel so never needed to have a t3 test done. So don't know whether conversion is a recent or long term thing.
Looking at those results your conversion hasn't changed very much, it seems that your reduced dose of levothyroxine has lowered your T3 to a level where you don't feel well.
You would probably benefit from raising your levothyroxine back to what it was before, whether you will be able to persuade your GP to do that with a low TSH is the question.
Your conversion ratio on the higher dose of levo was 4.01 and on the lower dose was 4.10 so I don't think it's the conversion, as that has improved a tiny bit it might be that you just need more levo back up to what it was before. Good luck
Looking at those results, when on the higher dose your T3 was 60% through the range, and you were not symptomatic.
Now with a dose reduction your T3 is at only 10% through the range :
Surely it's just a question of upping the T4 back up to where you were before and run with a T4 slightly over range and a low, suppressed TSH, you haven't a thyroid, you cannot go " hyper " - it's a physical impossibility, and you haven't a thyroid gland in situ.
They could suggest that on your TSH read alone you are overmedicated, but since you T3 is at just 60% through the range, you are not - but if you continue on the reduced dose your symptoms of hypothyroidism will continue and get worse.
I agree with you on all counts and today I have just found out there is a waiting time to see an endocrinologist of up to 18 weeks. My doctor will not increase my levothyroxine until I have seen him. I am considering seeing a private endocrinologist as I don't really want to wait that long. I was thinking I could ask on a separate post if there is a good endocrinologist near the area that I live or do you think I should just go to the nearest to me and hope for the best?
There's a waiting time of 18 weeks because everybody who maybe needs T3 has to be referred to an endo as doctors aren't allowed to use their own initiative and prescribe it.
Your doctor is obviously sticking to the guidelines like glue and is too unsure of him/herself to just put you back on the higher dose.
Is there another, possibly older and wiser doctor in the surgery with a few more notches on the bedpost ( so to speak ) who might know what needs to be done ?
As to your question there is a list of " friendly endos " held at Thyroid uk, and I'm sure if you start another post asking for an private endo in your area you will get some answers. But why waste your money ?
I think try I would try and see a different doctor, or if all else fails, buy your own T4 in the meantime while you have to wait out these 4 months.
Yes, I gave my doctor and endo Professor Toft's article but it went down like a lead balloon and I felt even more alienated and ostracized for having done research into my health condition.
If I thought it was that easy i.e. buy my own levothyroxine then I would jump at it pennyannie but I have to have a blood test at the end of Sept and it will give a false reading as I can't tell my doctor I am self medicating can I ? I had to see the oncology nurse today ( due to ovarian cancer a while back) and she said that one thing doctors hate is you going over their heads and seeing another doctor in the practise. She suggested going private and I can't see what else i can do, even though I must admit I would rather spend the money on something nicer.
I know, it's not ideal, but you must do what makes sense for you.
I found it all so stressful, but thank fully only have thyroid related issues so have taken myself off of the NHS merry go round and am doing my own thing.
Please be aware the if you go to a private endo, your doctor does not have to accept or follow anything this specialist suggests.
I know, been there and got a large bill instead of a T shirt.
Take good care, it's a stressful situation and stress is something we all need to avoid if we can.
I have just spent the evening reading Your Thyroid and How to keep it Healthy by Dr Barry and I feel even worse as I now think I may have ( infact probably do have) adrenal fatigue as well. How I go about getting that sorted is another matter all together, it's bad enough trying to get my thyroid hormones level lol. He suggests dealing with the adrenals before the thyroid but I don't have that choice as I have no thyroid. Unfortunately he doesn't cover in his book people like myself who have had a thyroidectomy and therefore can't play around with experimentation so much. But hey ho!!
Thank you for your help anyway, I appreciate it a lot.
I understand what you are saying and I too believe my adrenals had picked up the slack due to having no thyroid and inadequate thyroid hormone support.
If you continue through there are suggestions on what you can do to strengthen the adrenals.
I started adrenal glandular support two years ago, and do still take a lesser level of adrenal glandular every day, as I believe I'll need to take this support along with my thyroid hormone replacement indefinitely.
I have been very unwell and housebound and it's a long slow road back to some sense of wellness, but it is doable.
I understand your immediate upset and shock, as it's not a simply fix.
Should you have a blood test before taking glandular support to determine your need for it or just go on symptoms, which reading them could be a host of other things? Although I'm fairly sure that I will need it to some degree. Is it a supplement you take and how much should you take?
I didn't bother, I was desperate, just read up and purchased some adrenal support . I also started to increase my ferritin myself, which was the only mineral I was told was "ok but just a bit low ".
My ferritin was at 22 and I read it needs to be up and over 70 for optimal conversion to T3. and this also applies to folate, B12 and vitamin D.
So, it might make sense to see where these four vital vitamins and mineral are so you have a base line to supplement from should you need to. If your doctor will not run there tests you can get them done privately.
I was in a downward spiral for a couple of years, with ferritin dropping and Levothyroxine not working, and my adrenals in overdrive trying to compensate.
I had drunk radioactive iodine and my thyroid ablated in situ, slowly burnt out, and this treatment can damage other glands and organs, and I believe did, causing me many of my symptoms though I was told by my doctor that I was a conundrum.
Your situation is very different to mine - and I'm sure you can turn this around, relatively quickly.
Sorry to keep asking questions but where did you get your adrenal support from? Also is it possible that you can over medicate with it if it turns out you didn't need it after all?
My ferritin is 74.5 and my vit D is 74 , Folate 9.31. All within range. I am waiting for vitamin B complex to arrive today and Vitamin D mouth spray with K2. I'm hoping that these vitamins will help with my conversion problem.
Our problems are different but we both have the same problems with the NHS. Your story sounds horrendous, at least with mine I know the reasons why I feel so bad at the moment and just have to try and persuade my doctor to see sense.
Unfortunately it may be a few months down the line unless I go private.
Ok. in the book in the adrenal connection chapter there is a reference to adrenal supplementation. At the back of the book there are recommended suppliers - I use Nutri Limited and purchased the Nutri Adrenal Extra - referred to on various websites as NAX.
I had a very, very acheeeey lower back and within a month or so these symptoms were relieved. I don't think you can over medicate, as I read it, with, and now without the brain fog - Chapter 9 page 129 - " Thirdly, prescribed in the way I discussed earlier, there is no risk, since the amount of adrenal support is physiological. This means , even if it's not necessary, no damage is done, no risks are taken, and it can be withdrawn whenever thought appropriate. "
Many people feel well on T4 only drugs, but you may not find them in forums such as this one as many who join forums are NOT happy with the standard T4 treatment...that is why I joined several online forums to find out more about alternative treatment methods.
However, reducing your levo dose based on your TSH only, without looking at your free T3 and T4 levels, can result in hypo symptoms. Most doctors go by the TSH only and raise and reduce the dose based on it. That is complete madness!
Is there any way you could convince your doctor to raise your levo to your previous dose?
There is an article by British endo A. Toft (hopefully, someone here can link to it) where it is stated that many people on T4 only drugs feel well with a TSH below 1 and a TSH at or even slightly above the upper normal limit (which seems to apply to you). So that should NOT be a reason to lower your levo dose unless you also display hyper symptoms!
Hi, when I visited my doctor I had already printed out the article written by Prof Toft and I have asked my doctor to read it. He still wants me to see the endocrinologist though and isn't willing to increase my levothyroxine until I have. He is being very cautious, which is ridiculous when I have been on a higher dose for the last 30 years and only now on a lower dose do I feel awful and unwell.
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