So I have done everything this group has advised since July when I started Levo. I read this forum everyday and I supplement properly,have bloods taken as advised etc
I’m on 75mcg I weigh over 90kgs each time I’ve upped the dose I feel great for two weeks then terrible again until I get bloods and up the dose.
Don’t get me wrong I feel better than I did in July but still struggling at 4/10 energy wise. How can I convince my GP to increase my dose when my TSH is so low 🤷♀️???
Do I just plod on for another few months and see how I feel after the winter months? (I’m not good mentally at this time of year)
My results have improved but my energy is still ……… well only one word for it …… shite!
Any suggestions 🤷♀️
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SarahJane1471
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The simple answer is that you're not yet optimally medicated.
If your GP had started you on the "dose by weight" method which is 1.6mcg Levo per 1kg of body weight, you would be on 144mcg Levo. That is just a suggestion for a starter dose, it's not set in stone that it is what you will eventually need.
He started you on 25mcg and you're being increased by 25mcg every few weeks, you're on your way but not there yet.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Your FT4 is 45% through range and your FT3 is 40.54% through range so you still have quite a way to go to get them into the upper part of range which may be 60% or may be 70% you will know when you get there.
Your TSH is already below 1 so your GP might start to freak out if it goes any lower, this is where you have to fight and emphasise that TSH is not a thyroid hormone, it's a pituitary hormone. The thyroid hormones are FT4 and FT3 and it's these that tell us our thyroid status. TSH is useful in diagnosis but once on thyroid hormone replacement it's the FT4 and FT3 that become important. We don't have any official guidelines about this, all we have is the article from Dr Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of this article from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
Thanks Susie I’ve read all Dr Toft stuff and watched the video before. It’s how to get across this point to my GP that I’m worried about.Thanks for the quick reply 🙏
each time I’ve upped the dose I feel great for two weeks then terrible again until I get bloods and up the dose.
This is perfectly normal, and happens to most people. It just means that you're ready for the next increase. And, this will continue to happen until you get to the dose that is optimal for you.
Always Mercury Pharma. It’s takes a battle to get FT4 and FT3 as well as TSH so very unlikely they will do all the others 😬and I cannot afford private bloods. I do take all the supplements as advised on this group. Thank you for all your reply’s 🙏
The good thing is that you seem to convert t4 to T3 well enough. One more dose increase could make all the difference. When talking to the dr, I emphasise that my health impacts not just me but my relationship with my partner and family and ability to work. Stress the fact you don’t want to lose your job if your partner. Then I ask for their support in trialling a dose increase. I then say I’d rather take a synthetic version of a naturally occurring hormone than take antidepressants and multiple painkillers…
I tried for years to get a dr to prescribe T3 because mine was always so low. I finally convinced my primary care and she gave me 5 mcg. After a few days my heart was racing like crazy. I called to tell her and she told me to stop taking it because that meant I didn’t need it. Wrong!!! After doing my research I figured out that I was probably starting on too high a dose. She would not prescribe again so I ordered my own from Mexico and started taking a tiny sliver each day (you can only get 25 mcg from Mexico). I was feeling great and finally found an endocrinologist that would prescribe it for me. I now take 5 mcg in the morning and 5 mcg in the afternoon. My tsh continued to be suppressed so she has lowered my T4 and reordered bloodwork several times. I was taking 112mcg of T4 and am now down to 100mcg 5 days a week. She has not confirmed this but I believe I was not converting the T4 to T3 like I should. Good luck to you. Be persistent and don’t give up!!! I started taking thyroid meds after RAI over 30 years ago. I finally feel close to human after all these years begging doctors to give me T3 but since it was always “normal” (at the very lowest end of the range without being “low”) it was a battle. It sucks that it has taken almost half my life to feel normal and sad that drs look at numbers and don’t listen to how a patient feels.
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My latest blood results
Feel worse on 100mcg Levothyroxine. I felt better on 75mcg. I’m not over medicated. Is this thyroid gland suppression? 
Low T4 - ? need to adjust T4/T3 medication ratio
Endocrinologist not raising sister’s dose above 25mcg?!
Top of range bloods - but I don’t feel anything! What now? Is it Central Hypothyroidism?
