So six weeks ago I went to my GP as I had this horrible body ache and sore tendons. She surprised me by looking at my private blood test, and ordered her own T3 test which came out just below range I think it was 3.6) she immediately increased my T4 dose from 112 mcg a day to 150 mcg and asked for me to have a blood test (again T3) in six week times, which I will be doing Monday.
So the first week of taking the higher dose I felt absolutely nothing, then I had a day or so where I did feel a couple of palpitations, then I had a week of feeling absolutely amazing! ( I posted here about feeling giggly!). So much so that I would suddenly wake up in the morning, jump out of bed and pack so much in to my days! I even looked different, over night I suddenly seemed to have lost all water retention (that I wasn’t even aware of) and for the first time in years I could see my cheek bones, bone structure and tendons in my neck! (I don’t have optimal kidneys). Even my husband looked bewildered for that week and could not believe the difference in me.
However, it was sadly short lived. The amazing feeling went and the water retention came back. I definitely feel better than I did, ie the really bad body ache has gone) but I’m beginning to ache and feel only slightly better than before.
I am due to see my GP next week after my test results are back. I feel I should tell her what happened but I have a fear that I will be seen as a neurotic with pyschosomatic symptoms. As this is how I was seen once before with an old GP who refused to entertain the idea that I had a thyroid problem and sent me down a 9 year ME /hell journey!
So is this a normal reaction? If not can it happen? Is there any research I can use to back up? I feel I have found an angel in my new GP, so I don’t want to get it wrong after the nightmare I have had with the other one (he is still there and owns the practice...)
Thanks
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Gilbo72
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For some reason, some people who have been perfectly fine on levothyroxine, start to have problems. When tested, their T3 is low within range or just below range.
Some doctors will completely ignore this and some try to deal with this by increasing the levothyroxine as this sometimes increased the T3 level. Your next test results may show that another increase in levothyroxine is warranted. However, in a small percentage of people, taking liothyronine (T3) is the only thing that helps.
It might be an idea to check your levels of vitamin B12 as this could possibly be causing your symptoms. However, if you have good levels of B12, and the increase in levothyroxine doesn't help, perhaps it's time to discuss a trial of T3. If your T3 levels are below range, I would think that this may be a good route for you to take.
It is extremely difficult to have T3 prescribed at the moment, though, due to the high cost. According to NHS England, T3 can be prescribed to a patient but only by an endocrinologist so you would need to ask your GP for a referral. Make sure you check that the endocrinologist you get referred to is open minded about T3 - some aren't.
Yes I have been referred to an endocrinologist but my appointment isn’t until June!! I think he is pretty good. I saw him years ago after I had been ‘diagnosed’ with ME as my GP took me off levo, and he clearly wrote that my CFS symptoms were most likely due to an under active thyroid and I probably had conversion issues so keep my TSH low and my T4 high. However, I think they will never prescribe T3, I think there are only 23 people in the 9000 people on Levo in our area that are on T3only and only 3 on T3 and T4!
My B12, ferritin and folate were all low at my last test and following advice here I am supplementing but haven’t retested yet as I don’t think they are optimal yet.
I just wondered why I had that definite improvement and if I should bother mentioning it? The problem is, it felt so good I want to feel like that all the time, but I don’t want to confuse matters! Ha ha
Sometimes an increase will make someone feel brilliant for a few days and you start doing lots of things you haven't done for a long time, using up more energy than even the increase can deal with and then you crash again.
This is a 'normal' reaction, yes. And, it just means that you need another increase in dose, because the last one wasn't quite enough.
However, as you are on levo monotherapy, it's not very helpful just testing the FT3. You need the FT4 tested, too. Because it's by comparing the two that you find out how well you're converting. It could be that you're not converting very well, and that's why your FT3 is low, and you need T3 added. Or, it could just be that you have absorption problems in the gut, and therefore your dose of levo is not well absorbed and you just need another increase in levo. But, you won't know the reason for your low FT3 if you don't test the FT4 as well. It could be, that's not something that your doctor understands. Or else she's just thinking that she won't be able to give you T3, anyway, so doesn't bother to find out if you need it. But, the problem is that the higher your FT4 gets, the less well you will convert, so it is rather important to know what your FT4 level is.
hi greygoose, I think the test will be comprehensive, she's testing for FT3, FT4, TSH, urea and electrolytes and liver function... lets hope the lab does it!
I have always had suppressed TSH and high/over range FT4 in the past on Levo, with T3 at the low range. This last test before the increase had seen my TSH rise to about 3 and my T4 drop to around 18 and my FT3 at the low end of range. Based on that test she tested for T3 only a couple of weeks later which had dropped further to out of range, hence the dose increase.
its all so complicated isn't it? My mantra is now 'dont pigeon hole me!'
Well, sounds like you have a conversion problem, then. But, the answer is not to keep increasing the levo, the answer is adding in T3. As I said, increase the level of the FT4 decreases conversion. So, how much levo would you end up taking? So much simpler to just reduce the levo and add in T3.
I very much doubt your doctor would understand why conversion rates decrease when the FT4 gets too high. In any case, your GP cannot prescribe T3, that's down to the endo. But, with the endo, you may need to point out the seemingly obvious problem with conversion - i.e. low FT3 with high FT4 = conversion problem.
As for the good week, I'm not sure that needs mentioning. It's to be expected by anyone that knows anything about thyroid. And, if they don't know they wouldn't understand the significance. But, as with all GP appointments, you really have to play it by ear.
If, on T3 or NDT and symptoms begin to return an increase of 1/4 tablet is due every two weeks until we are symptom-free. I know the reality of them not now prescribing T3 but they don't seem to understand the difference between T4 (inactive hormone) and T3 (active hormone) and prescribe similarily which may not suit the patient. I can understand the reluctance of GPs/Endos not now prescribing T3 (due to cost alone) but some (myself included) are far more unwell when on levo and we don't have a life. People wonder and cannot understand that we don't have sufficient hormones (not medications) that run our whole metabolism from head to to and why we are complaining as we're taking a prescription medication, so believe we are not telling the truth. They are assuming its like taking a tablet for a headache which will be gone in a couple of hours.
Dr Lowe (a previous adviser to TUK) only took one blood test for the initital diagnosis and thereafter took no more. It was all about the patient's symptoms being relieved by small increases every two weeks. He himself took 150mcg of T3 daily (in middle of night) so he knew exactly how patients felt when undiagnosed/underdosed he also diagnosed himself by looking at past family histories and resolved his problems and also became a researcher/scientist. Also how many 'additional prescriptions' are given to people for their remaining symptoms which other doctors assume are nothing to do with hypothyroidism? I don't know if you've read the following and it is from Dr. Lowe whose widow now deals with the product. It is not a plug for the product but the three Chapters might be helpful or questions/answers may be helpful also.
So if you are naturally hyperthyroid you would have a low TSH and high FT4 and would be over stimulated or suffering from Thyroxitosis. On this basis, most Doctors assume someone who is hypothyroid and treated with Levo and has low TSH and high FT4 must also be 'Hyperthyroid' and therefore over stimulated or Thyroxitosis? - which is incorrect as you are hypothyroid and not necessarily suffering from thyroxitosis.
The issue with TSH is a bit like that example of faulty logic: battleships are grey, elephants are grey, therefore all elephants are battle ships. Well, no .... It is the case that low TSH:high FT4 indicates hyperthyroidism; and it is also the case that optimal medicating of hypothyroidism tends to cause the TSH to be low and FT4 high in range. But just as elephants are not battleships, low TSH brought about by optimally medicating, is not hyperthyroidism.
Thyrotoxicosis is the condition that arises from having too much thyroid hormone, caused by hyperthyroidism and Graves' most commonly, but also as a result of a multinodular goitre, or a single toxic adenoma, or arising post partum, or as a result of several rarer conditions.
Yes - you are right, the doctors seem to have been told if TSH is too low we're verging on hyperthyroidism. So they immediately reduce our dose which probably results in us feeling symptomatic again. They should really be concentrating in relieving our clinical symptoms but nowadays they know none and they've been directed (it seems to me) to only adjust by levels of hormones up/down/up/down to keep TSH in a range.
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