I visited my endo for the first time full of trepidation as I was aware that all my results on paper looked within range but I know how ill I have been feeling for months now.
My Endo said I had been referred as I had requested T3 from my GP ( who is sympathetic by the way and told me she has another patient already taking T3). He then spent about 20 minutes explaining how i didnt need T3 and T4 was doing its job. As My TSH was on the low side he suggested I was already over medicated on 150mcg Levo per day.
I presented him info downloaded from this site and his opinion is that this site and Thyroid UK are "off grid" and full of "militants".
I was extremely calm ( I had cried all they way there with nerves!) as I had re read some articles that gave me strength and I waited until he had finished dismissing many of the views held by members on here.
He then said that some people were determined to have T3 despite all evidence against it and asked "which camp are you in". I responded by saying that it was really important for me to work closely with my clinician and it would be difficult for us to work together if he had a negative view of me taking T3. I explained that I wanted to trial T3 depsite his misgivings but I wanted him to monitor my progress in a positive way. He then agreed to give me the prescription for Liothyronine 20 microgrammes but I have to half these and take 3 times a day. He halfed my Levo to 75mcg per day. He had originally said that I would be unable to see him again this year as all his appointments have been taken but he then changed his mind and said I should have a review meeting in 3 months with blood tests every 3 weeks.
Phew!!
I would really like to thank all on here for being so wonderful and giving me strength to challange his view of T3.
Can I also ask someone to look at my blood results and give your thoughts on my levels.
He did warn me that any improvements would be due to a placebo effect!
Three days in,, I have a slight feeling of light headed and "fluttery heart" every now and again but brain fog is almost totally gone!! I also feel more energised and as I have chronic fatique syndrome that is great.
What is the best way to take T3? with food? before food? he did say that I mustnt take it with any vitamin supplements.
Thank you all again!
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Lovelifedance
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It's great that you kept your cool and presented him with the evidence from the 'Militants'. Next time you can tell him there is over 34,000 members on this site only due to the fact that they are still unwell even though they take levothyroxine.
HU Thyroiduuk.org are also recommended by NHS Choices for info/help for people with thyroid gland dysfunctions.
Food interferes with the uptake of liothyronine (T3) so it might be difficult to find a window when your stomach is empty. In women our stomach empties more slowly than men and it can take about 2 to 2 1/2 hours after a meal (depending what you've eaten) to empty and after taking T3 wait about an hour.
Thank you for your support. It is worrying that health care professionals are classifying patients that are trying to have some kind of control of their care and treatment as militants!!
It's amazing they think it is so easy as diagnosing only by the TSH and treating us upon the TSH as well. The have no knowledge of medical symptoms or aiming for the relief of them of very unwell patients who are then given addtional 'meds' for the symptoms instead of a decent dose of thyroid hormones.
I am shocked at the hostility the medical profession have to a massive group of people that have obvious ( and in many cases solvable ) medical symtoms.
It is especially bad when they are arrogant and dismissive and suggest we have a mental illness instead of a hormone deficiency - and they are unable to accept/or know that one of the Master Glands is dysfunctioning.
On the BBC radio the other day when Lorraine Cleaver was putting forward her awful experience (she has a Facebook page) and said that one of the members told her she was going to commit suicide and, poor soul, she did so, but not before she wrote a 10 page letter pointing out that it was due to her treatment that she had now come to the end of the road. This is Lorraine's story (she took her case to the Scottish Parliament) and it is anger that takes over when you do find out that there is something that may make you well again but you've been denied.
Few will understand except those who aren't getting the support or trials of different hormones and are puzzled why the Endocrinology refuses to do so when levothyroxine doesn't appear to be isn't working and patients have no-where to turn. Also clinical symptoms are unknown, I believe, due to the modern way of diagnosing/treating.
Lovelifedance, 'Off-grid Militants' is good Another way of putting it would be to say a significant minority of patients' symptoms aren't relieved with Levothyroxine and they need T3 or NDT to feel well.
If a doctor tells you T3 is a placebo ask why it is prescribed to thyCa patients after thyroidectomy and prior to RAI, for 3 months in my case. I was doing well on T3, terrible when I was switched to T4, and have been well on T4+T3 for 18 months. The 'placebo effect' works very well for me. I got the 'not enough evidence T3 is beneficial' speech from my endo but he acknowledged I'd considerably improved my health by self medicating for 6 months in between appointments and didn't want me to continue buying on the internet, so he prescribed.
Pulse and heart rate increase 1-2 hours after a T3 dose and should subside in another hour or so. If they don't, skip the next dose.
Take T3 away from food and drink and meds/supplements the same way you do for T4. You can take your first 10mcg dose with Levothyroxine and the second 6-8 hours later, or longer. I take my T4+T3 morning and a second T3 dose at bedtime. Don't take T4 or T3 prior to a blood test.
Ahhhh the medical profession seems full of contradictions when it comes to thyroid meds!!
Thans for the advice re times to take my dose. I have to take mine 3 times a day so fitting it in berween food is going to be a bit tricky as I am naturally inclined to take it around meal times. I will try and take it when I get up then again mid afternoon and then again at bed time.
As I have to take 30 mcg per day in 3 x10 doses would you suggest taking 20mcg in the morning then 10mcg at night instead of 3 times a day?
I am seeing my GP in 3 weeks and will mention the Vit B12 as my sister was very ill with B12 deficiency a couple of years ago. We are both hyperthyroid but she was hyperthyroid for a long time.
Lovelifedance, I take 20mcg morning and 10mcg bedtime. European Thyroid Association recommends taking the largest dose at night which is closer to circadian rhythms as FT3 is highest 2am to 3am. I've tried both ways and didn't find any difference.
NHS won't see B12 >400 as low or deficient and won't usually prescribe when it is within range. You can buy methylcobalamin sublingual lozenges, spray or patches on Amazon and other online sites. Please use the affiliate link if you use Amazon thyroiduk.org.uk/tuk/go_sho...
Thank you Clutter,, I will order some of that and see if it makes a difference. I will also try taking 20mcg morning and 10mcg evening as that would be a lot more convenient.
Day 4,, heart flutterings have subsided and brain fog is much better! Unfortunately I can now see how much work I have sat on my desk that all seems to be urgent as I have been working so slowly for the past 12 months! Eeek!
Lovelifedance, August results look good, TSH low, FT4 is probably mid-range, and FT3 5.1 is good. I think it is likely with the addition of 20mcg T3 that TSH will become suppressed, FT4 drop lower and FT3 rise to the top or slightly over range.
Ferritin 93 is adequate to good. Optimal is halfway through range.
B12 <500 may be deficient. PA Society avise 1,000 is optimal. Supplement 500-1,000mcg methylcobalamin and take a B Complex to keep the other B vits balanced. Folate is good.
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Another way of putting it would be to say a significant minority of patients' symptoms aren't relieved with Levothyroxine and they need T3 or NDT to feel well.
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