I have been diagnosed with 'sub clinical' hypothyroidism (due to autoimmune condition) in the last few years and my life has been shit ever since as I'm sure many can relate. I didn't get on very well with levothyroxine during my first trial, but I decided to persist giving it another chance especially after my NHS Endo convinced me that most side effects would come from differences in brands. I think I'm happy with the brand that I'm on (Mercury Pharma), but my symptoms fluctuate and I keep getting extreme swings and just feel generally really lousy and hypo. I know I need to do something about it, but I'm running out of options. I have been on 50mcg now for 6 weeks and my latest blood tests from this week are as follows:
TSH: 3.58 mIU/L (0.35 - 4.94)
T4: 11.9 pmol/L (9.0- 19.1) 29%
T3: 4.1 pmol/L (2.4-6.0) 47%
GP wouldn't increase (not sure if that would help or make things worse) nor would Endo. I feel like stopping the meds as generally I feel more stable without them, but just wanted to check if anyone can help me understand what is going on.
I might want to try NDT and happy to pay if I can get my life back.
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rainbowcabbage
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Why wouldn't they increase your dose? You're very under-medicated, all three results are saying so. Not surprising you don't feel well. And 50 mcg is only a starter dose. The protocol says it should be increase by 25 mcg after retesting at six weeks. I cannot understand their logic - if there is any, and not just blind ignorance! I would get forcefull about it, if it were me!
Thank you. This what I was thinking, but it’s hard when the brain doesn’t seem work as well. There is absolutely no other reason I can think of why they shouldn’t increase. They actually recommended I should stay on this dose for the next 6 months. Ideally I would like increasing to happen every 4weeks because that’s when I notice the turn of the symptoms.
Ideally I would like increasing to happen every 4weeks because that’s when I notice the turn of the symptoms.
Not a good idea long-term. The closer you get to your sweet-spot, the longer it's going to take for the dose to 'settle-down'. You wouldn't get useful readings if testing after only 4 weeks.
I think the only reason they won't increase the dose is pure pig-ignorance! But, have you asked them why?
Ok that’s fair, makes sense. I’m hoping I won’t feel as bad after the next increase.
I’m getting so fed up with them at this point but I will ask why. I think my GP is more likely to increase so I will ask them for an increase first (I know this isn’t usually the case).
The temptation is to ask the Endo now why are they are so ignorant 😒
Tempting indeed! 🤣 But the answer is probably that he's a diabestes specialist who didn't listen during the lecture on thyroid, and really now just has no idea what he's doing.
But, if you get an increase in dose, it really should help.
I'm guessing this one is for me, although I'm glad to see that others are finding the post useful too- that's the whole point of this I guess.
I'm on 100mcg at the moment (last increase 3 weeks ago), but I still feel miserable, my gut is worse than ever and the brain fog is making it hard for me to do anything productive. I'm tempted to just stop taking Levo and go back to square one, but I know I have to persist at least for another few weeks and then repeat bloods... Not sure what else to try really.
Hi Rainbow, just wanted to say, I'm a few weeks ahead of you bit going up to 100mcg has been so painful. Weeks 4 and 5 particularly hard for me. I've been trying to get from 75-100 since April but the side affects made me go back. This time I'm determined to stick it out. Week 6 has been a bit better. I was also only 'sunclinal' and yes I feel worse than before I started taking levo. If it wasn't for this forum I think I would have stopped by now. I just hope that by reaching my optimal dose in the next few months, I'll start to improve. I know I would have eventually got more and more unwell without the levo but it's a hard pill to swallow for sure. Hope you see some improvements soon
Oh I really hope you start to feel better soon! It’s really hard to stay hopeful and see a way out of this but there must be. In my case I think there are other factors to consider and gut health is definitely one of them. I’m happy to hear you have found the forum helpful and comforting during this difficult time. It’s really helped me too! I find that 3 weeks after (every) increase I start to deteriorate rapidly and sticking to the same dose is intolerable. Then I increase and I feel somewhat better for another 3 weeks or so…
You have Hashi's so symptoms will fluctuate it's par for the course.
Are you gluten free, many are helped by this exclusion?
50mcg is only a starter dose and after 6 weeks your labs show you need an increase....your FT4 is miserably low at 29% thro' ref range.
So long as FT3 is in range you will not be overmedicated....your level is actually on the low side
Have you recently had or feel you had Hashi swing? Your hormone levels would rise for a bit then drop back, you would feel hyper.
We aim to have both Frees roughly approaching 75% thro' ref range
When medicated TSH should, at least, be less than 2.
What on earth have these medics been taught! Not a lot I guess!!
Hashi's aside your T4 to T3 conversion seems reasonable so no great need , at the moment, to add T3 with NDT
Have you otimised vit D, vit B12, folate and ferritin, essential to support thyroid function
Can you see a more clued up GP who understands how to evaluate labs? One who listens to your symptoms and acts on them.....they are important and doctors are supposed to take them into consideration.
Push for an increase to 75mcg T4...ask for that as a trial rather than insisting on an increase...that sometimes soften their approach because they feel more in charge!!
Monitor GF, symptoms, nutrients carefully for a further 6 weeks following the increase, and hopefully things begin to improve....then after 6/8 weeks on a steady dose of 75mcg test again. The results will point the way forward
Listen to your body, it will tell you if something is wrong!
Come back with any queries an the results....we're all here to help.
Thank you for the tip about asking for a trial instead of an increase- I like that! I will definitely give this ago.
Gluten is not a problem for me, but dairy is still a question mark. However, I will wait until I'm on a steady dose so it's easier to know what causes symptoms before I start cutting anything out.
All vitamins were still ok last time I tested 🙂
If GP persists in not increasing then I will just go to a private Endo. I have been wanting to do this for a while, because I also have pain in my neck and I hear that this is not a normal symptom.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
It's a difficult one because these guidelines actually suggest I shouldn't be treated with Levo at all:
If the serum FT4 concentration is normal and the TSH is elevated but <10 mU/L then thyroxine therapy is not recommended as a routine therapy.
However, I'm going with how I'm feeling and hopefully the fact that they put me on Levo in the first place means they believe that I'm actually suffering.
My GP said we should be aiming for a TSH of about 2.5, which is still better than what it is now. Probably I'll end up on 100mcg anyway, but the way there seems really loooong from where I am now.
It seems that my Hashimoto comes from my father's side. As they have refused to accept the diagnostic given by an endocrinologist in Latin America, I am planning to go to Panama to be treated/oriented by the endocrinologist that treats my aunts, my cousins, my nieces that have hipothyroidism. I have a phone appointment with a GP in September, and I will tell him that I am taking Levotiroxine 25 that I managed to get in Spain. I could not cope anymore with the constant fatigue. It is so disappointing the attitude of GPs. In fact, one told me "let's wait until you are worse" Unbelievable! Not interested in prevention.
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where to go next?
Where to go from here?
Back on Levo after a year (and ££££ on Erfa) Blood test results advice
Extreme hair loss and told to reduce levo
is T3 working? 
