Help needed, will GP's prescibe T3 or can I source privately?

I was training for a competition approximately 9 months ago. I was eating so ‘clean’ and was not doing an excessive amount of exercise. But yet I was fatigued, felt horrendous and eventually my trainer sent me for blood tests, especially for thyroid function. To cut a long story short my blood results indicated that there was something out of the ordinary. My trainer requested the results and demanded I get a consultation with an endocrinologist as said my results were far from normal. The endo diagnosed me with severe secondary hypothyroidism!! As I was training and eating healthy and trying to ignore every symptom he couldn’t get over that I had such an uphill struggle and had a bodyfat level of 17.9%, definitely not textbook.

Since then I have been on approximately 100mcg of levo and recently have been wakening to a migraine every day. I am irritable, tired and verging on depression. When I attended my GP appointment they advised that the private endo had been requesting to see me on the NHS and I had not been told. Apparently the last bloods weren’t ‘normal’ when I was told they were and he had wanted to discuss this with me.

I asked my doc yesterday for T3 as i didn’t think I was converting the amount of T4 i was taking. She advised that they couldn’t prescribe anything and that ‘I looked exceptionally healthy’. She did request new tests which I received the results for yesterday, They read as follows:

TSH – 6.79, FT4 – 10.6 & FT3 – 3.7

All of which are either high or low and indicate to me that my body is not converting. The doc rang to discuss the results and I again requested the possibility of T3 as I feel Horrendous! She advised that the endo usually has to prescribe the medication, but she would speak with the practice manager who will not be in until tomorrow. I won’t hold much hope as they don’t seem keen on using T3, is this because of cost implications? Surely my blood results are screaming that they need assistance and not in the form of levo?

I am at my wits end, I am trying to survive daily life, plan a wedding and be hopeful of beginning a family this year. Any advice would be greatly appreciated.

4 Replies

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  • I am sorry you have had difficulty being diagnosed but it is not unusual. As for your GP saying you looked 'exceptionally healthy' when you tell her your clinical symptoms, it just goes to show that they have been told to diagnose only on the TSH and do not know clinical symptoms of thyroid gland problems,

    When you post your blood test results always put the ranges as labs differ throughout the country and it makes it easier to comment. I will say that your TSH is still too high and you need an increase in medication. Many people don't feel well on levothyroxine but some do. Also always get a copy of your blood test results for your own records and also you can post them if necessary.

    It is a bit of an uphill struggle inititally and your meds have to be increased gradually. If you have an Endo, hopefully he will prescribe at least some T3 as that is the Active thyroid hormone each of our cells need, the brain contains the most cells, and T4 (levo) is supposed to convert to enough but sometimes it doesn't happen as it should, especially if ferritin is low. Also levo is a synthetic thyroid hormone which is not always synergistic with our bodies.

    Regarding the prescribing T3 alone, this is the guidelines laid down by the British Thyroid Association:-

    british-thyroid-association...

    british-thyroid-association...

    For the link above, a scientist sent a Rebuttal to the BTA saying they had made False Statements but the BTA never responded, despite three requests. Unfortunately Dr Lowe died last year.

  • Hi, Without the ranges its a bit difficult to comment, but you're unlikely to convert the thyroxine (t4) into t3 until you have enough of it. IM assuming it's no where near the top end of the range so correspondingly your free t3 is no where near the top and the tsh is raised.

    Until you have had sufficient throxine to get to to the top of, or just over the range, you wonT be sure whether you can convert or not. Selenium is needed for conversion too.

    Its easy to jump to conclusions about none conversion..... But the truth is that its claimed that 85% of people with hypothyroidism, do just fine on it. The other 15% either suffer, or find their way in to forums like this one.

    The training, despite the thyroid problems, might have overtaxed the adrenals.... I had this problem.... I was training and each session was taking all day to get over, plus some of the next day..... I could push myself, but felt terrible after. I did a saliva adrenal test and found that my cortisol levels were a flat line from 11 am until bedtime... It took me two years to regain adrenals.... Taking t3 can stress them too. The saliva test is available privately for about £70.

    Its easy enough to source the meds privately, but diving in there and just taking t3, without checking adrenals, and without trying to get to the top of the range with the t4. may not do you any good.

    Have you checked stuff like iron and ferritin. A s well as B12, D3. ? Its not a quick fix all of this, but you can do it..... ( I got better)

    Whilst you are checking everything, its a good idea to monitor the daily average temperature and plot it on a graph. You take the temp 3 times a day , add it up, divide by 3. If the graph is a straight even line but low, that is low thyroid, if its up and down it's adrenal problems..... Have a look at drrind.com/therapies/metabo...

    Its a really useful tool for tracking your progress. ( I did my temps for 2 years.....)

    Oh yes, don't try for babies until the tsh is below 1, you won't do yourself or the baby any favours, Much better to get the thyroid stuff sorted first.

    G x

  • One thing that could make a big difference without any cost or fuss whatsoever...

    How are you taking your levo? Are you on any other supplements?

    The best way to take levo is to take it either first thing in the morning or last thing at night.

    If you take it in the morning, take it the instant you wake up with a full glass of water. Don't eat or drink anything else (except water) for at least an hour. If you are taking supplements - particularly iron and/or calcium, take them at least 4 hours after taking levo.

    I've never taken it at night myself, so am not sure of the routine to follow at night. Hope someone else can help you.

    ------------------------------------------------------

    In order for your body to get any benefit from thyroid medication you need to get several things right...

    a) Cortisol and DHEA output from the adrenal glands - needs to be tested with a four part saliva test. This has to be done privately, the NHS doesn't believe in adrenal problems unless you are nearly dead. Low or high cortisol need different treatment, so tests must come first.

    b) Iron/ferritin, folate, vitamin B12, vitamin D all need to be in the upper quarter of the reference range, and supplemented if necessary. Magnesium and zinc are also helpful but are difficult or impossible to get tested for. I'm not sure how reliable the results are for those two either. You need selenium and plenty of vitamin C supplements as well.

  • Hi all and thank u so much for your very thorough and extensive responses. I have a meeting today with the endo (money talks!) and hope to get something done. I have more side affects on the thyroxine than I do without!!

    I take it 3hrs after food before bed at night and then mid afternoon I have a multivitamin.

    Is this incorrect? I couldn't take it in the morning as naturally wake up searching for a protein shake!!

    To help with ranges etc I got a print out as suggested (thank u) and will take it to my endo today. The ranges are ft3 3.7 (3.1 - 6.8)

    Ft4 - 10.6 (10.6 - 22.7)

    TSH - 6.79 ( 0.3 - 4.5)

    With every increase of thyroxine I feel worse.

    My b12 was 1002 Ng/l (140 -640)

    I had a nutritionist explain that they doubt it was being absorbed and simply floated on the cells it was high!

    I just want to feel half decent in all honesty. Wakening without a migraine would please me!!

    I know from how 'healthy' I eat and exercise I shouldn't be like this. I will keep u all posted for sending such helpful responses.

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