Hi, I'm currently being treated for Hashimoto's and on 100mcg levothyroxine.
Over the course of the last 6mths I've had to have meds increased and decreased about 5 times.
Each time I go hypo my tsh goes high and t4 remains normal. Any ideas why?
My latest results are
Tsh 5.8 range -1.6 - 4.9
T4 17 range 10 - 22
Doc refuses to test t3
All other results are fine
Vitamin d 175
Folate 20>
B12 2000
Ferritin 120
Each time I go hypo my tsh goes high and t4 remains normal. Any ideas why?
There's no such thing as 'normal'. Not where thyroid bloods are concerned, anyway. When a doctor says 'normal', he just means 'in-range', but, as the ranges are so wide, 'in-range' doesn't really tell us anything.
Tsh 5.8 range -1.6 - 4.9
T4 17 range 10 - 22
In those labs, your FT4 is only 50% through the range. That would be much too low for most hypos. And, if your FT4 is too low, your FT3 is probably much too low. Doctors don't do the FT3 because they don't understand it, but T3 is the active hormone, and therefor the FT3 is the most important number. Both T4 and T3 affect the level of the TSH, so I'm guessing your FT3 is pretty low to have a TSH that high.
Over the course of the last 6mths I've had to have meds increased and decreased about 5 times.
That is terrible! You'll never get well if your doctor keeps messing with your dose like that. He obviously has no idea what he's doing, and I imagine he's dosing by the TSH, which is 100% the wrong thing to do. Guaranteed to keep the patient sick. Next time he wants to reduce it, tell him you refuse unless he tests your FT3. You are only over-medicated if your FT3 is over-range.
Has he explained to you how Hashi's works?
Hi greygoose thanks for reply.
I am so fed up with feeling poorly and all my Doc keeps saying is that I have health anxiety and offers me antidepressants.
When this pandemic is over I am going to insist on seeing an Endo.
He hasn't a clue about Hashimoto's and neither do the rest of them in the practice.
I'm also post meno and he suggested it could be hormones causing the fluctuations. 😳🙊
Well, it may come as a surprise to your doctor, but TSH, T4 and T3 ARE hormones. So, of course it's hormones causing the problems.
However, the fluctuations are more likely to be caused by him! He shouldn't be dosing by the TSH. That always causes fluctuations. TSH isn't even a thyroid hormone, it's a pituitary hormone. And, in order to get the pituitary to secrete a steady level of TSH, you need to be on a steady, unchanging dose of levo every day.
Having said that, Hashi's can also cause fluctuations, as I'm sure you know, at least. But, the main problem is him.
Don't let your GP chose an endo for you. The vast majority of endos are diabetes specialists, who think they can wing it with thyroid. They don't know anymore about it than the average GP. They can really mess people up. Ask for recommendations for a decent endo on here - replies by PM only, please - or email Dionne at
tukadmin@thyroiduk.org
and ask her to send you the list of patient recommended, thyroid friendly endos. 
Thank you so much for the advice. I will definitely keep all this in mind when I speak to him again.
One other thing- I had been on the same dose for the past 5yrs until 6mths ago.
It's strange because, when all this started I had all the hyper symptoms along with high anxiety and restlessness so was surprised when my results didnt show that. I was thinking maybe my particular brand(mercury Pharma)had changed a filler or something.
I'm afraid I don't know anything about the different brands of levo. I haven't taken any for years.
But, you could have had a Hashi's 'hyper' swing to cause those symptoms. Is that when your doctor started decreasing your dose?
Well, my dose has just been increased from 75mcg to 100mcg last week.
Yes it could well be a hyper swing as I really felt hyper but results didnt confirm that.
My doc knows nothing about Hashimoto's 😳
Doctors rarely do know anything about Hashi's. They don't learn about it in med school. Good that you've had an increase in dose, but you've got to stop him dosing by the TSH once the TSH goes below 1
UK levothyroxine rarely changes excipients (inactive ingredients).
(The last change I can recall was when old Teva was withdrawn from the market and an entirely different formulation launched something like three years later.)
Of course, we cannot know if one of the excipients came from a different source or was not to specification.
I do think its possible menopause affects thyroid hormone need, mine has been more problematic since menopause. there is an estrogen connection, but sorry i cant remember exactly how at the moment. did too much yesterday so brain made of porridge this morning .
i had hyper symptoms/anxiety at beginning of current 'messing about'.
I had been on 150mcg Levo for years.I had menopause around 2013.Since 2016 i have been reduced from 150 >125>112>106>100, then back up to 112 currently.
Overall result ... not good.
5 changes in 6 months is just silly, your body wont know what to make of it im sure.
Greygoose is correct. refuse to change dose in future if you feel ok, unless he can show you your FT3 result. They can get it done if they want to. and if they say the lab wont do it , well thats his problem to sort out,he's the Gp.
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