I have been on levothyroxine for around 18 months. To start with, my results were always 'subclinical' with my TSH around 5. I was symptomatic (cold, fatigue, puffy, aches) and prescribed 25 levo which was increased to 50 after 12 weeks. I was left on 50 for around a year and then bumped up to 75. This was due to a reading of 4.44 on my TSH blood test. I stayed on 75 for 12 weeks and then had another test. My TSH was around 3.79 so I was given a dose increase to 100.
Since the latest increase around a week ago, I have been feeling a little 'out of sorts.' Scatty, forgetful, brain fog, really hungry. Could this be related to my dose increase?
For the last few months, my menstrual cycle has been all over the place, which is something that has never happened before. It appears my body isn't reacting all that well to 75+
Should I stick with the levo?
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Mrs_Tumnus
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It could be that your last 25mcg dose increase was too much now you are approaching your optimal dose range. If it's making you feel like this, I would suggest you break the tablets in half and just take half per day. An increase of 12.5mcg is plenty at a higher range. Let that bed in and then retest.
My tip to you would be to just let the doctor assume you are taking the extra 25mcg a day so that you have room to experiment with a further small increase later on if you feel you need it.
I think you just need to lower the increase a bit for now.
I am hesitant to reduced the dose as I believe the optimal range on levo is below 2? Especially when wanting to conceive which is something we are hoping for in the near future.
I felt similar when I started sertraline a few years ago so I am wondering if these feelings are normal whilst I adjust to the new dose?
Past posts indicate the following, is this correct?
Jan 5th
Serum TSH level 3.70 mu/L - 0.20 - 4.50
Serum free T4 level 12.5 pmol/L - 7.0 - 17.0
These results are after 12 weeks of an increase from 50 to 75 in dose.
And 5 days ago you increased to 100?
Scatty, forgetful, brain fog, really hungry. Could this be related to my dose increase?
Are these brand new symptoms? Never had before on the lower doses? It would be unlikely that at a dose of 25-50 that you felt well, and guessing you didn't since you've increased to 100?
Remember there are no "side effects" of Levo as it's a synthetic of a naturally occurring hormone, and not a drug or pharmaceutical.
What's more likely is that the symptoms are related to sub-optimal hormones or vitamins/minerals. Ie, you are either undermedicated or overmedicated.
Your FT4 is 55% through range, which is not in and of itself "too high" and not a bad place to be. So it could be the 25 mcg is a lot all at once until you know how you will react.
But you would do well with a full thyroid blood panel, not just TSH and FT4 but specifically FT3. TSH is the least reliable indicator for dosing. You should never make a dose decision based only on TSH. FT4 is needed for dosing for many reasons, but only tells half the story to explain how you feel. FT4 is just a storage hormone that needs to convert to FT3 so your body can use it. And so it's the FT3 that will tell you if your body is getting enough of a usable thyroid hormone to help you function. Your brain fog symptoms indicate your brain isn't getting enough, but being really hungry indicates the opposite. Since you made a note of it, I'm guessing you weren't that hungry before. That means the levo is working, and your metabolism is kicking in. Sometimes the brain is a little slower to saturate with T3 once we've been low for so long.
That being said - Vit D3, Vit B12, Folate and Ferritin need to be optimal for your thyroid to function well, so even once your Free Ts are optimal (which you won't know unless you get your FT3 tested), but you may still be deficient in these 4 which presents symptoms of their own.
Since the latest increase around a week ago, I have been feeling a little 'out of sorts.' ... I am wondering if these feelings are normal whilst I adjust to the new dose?
First of all, yes this is completely normal during a dose adjustment - somewhat because a dose adjustment means you are currently sub-optimally dosed and therefore will have symptoms, but also because the 6-8 week period of a dose change is absolutely volatile.
Also, as FancyPants54 says, all else aside, even though 25 mcgs is a reasonable increase in an 8 week period, your FT4 is solidly mid range, so not a bad option to either take a week or two on 12.5, before increasing to the whole 25... or just target a 12.5 increase for the next 6 weeks.
But 5 days is not enough to evaluate how any additional dose will evenutally settle in your bloods. You should expect ups and downs with old and new symptoms in the minimum 6-8 week period it's recommended you stick with a does increase. Most often the advice here will be to wait them out. There are exceptions of course, and you know your own body, and you can always post here if you are worried about a particular symptom.
A dose of 100 is in the ballpark of pretty standard (we say 1.6 mcgs per Kilo body weight as a blunt guardrail)... but at this point there is absolutely no way to know your total thyroid health without your Free T 3 reading.
PS, Also I know aboslutely nothing about being hypo and TTC...! Not sure the basics of our Free Ts change, but someone will come along and correct me if needed!
Thank you so much for such a helpful and informative reply.
T3 has not ever been tested. If I arrange this privately, do I then take the results to my NHS GP?
With regards to vitamins etc - I have b12 shots every 12 weeks at the GP as I was not absorbing it orally. I have vitamin D3 2000iu daily and multivitamins.
"Serum TSH level 3.70 mu/L - 0.20 - 4.50
Serum free T4 level 12.5 pmol/L - 7.0 - 17.0
These results are after 12 weeks of an increase from 50 to 75 in dose.
And 5 days ago you increased to 100?"
Yes, the above is correct. I had a review with the GP upon receiving the above results and she advised that optimal TSH is under 2 on levo so she upped to 100.
For years, I have been fatigued, gaining weight, no energy, dry skin, hair loss in shower, aching, puffy face. My mum is hypo and advised me to get tested. Over the years (2016 to present day) my TSH was on an upward trajectory until it finally tipped into 'abnormal.' During this time, my T4 was on a downward trajectory.
SlowDragon enquired as to brands of levo - these seem to change every time I receive a prescription. Is there a brand I should avoid?
T3 has not ever been tested. If I arrange this privately, do I then take the results to my NHS GP?
How you navigate your NHS GP is highly individual depending on your GP. Experiences have been everything from accepting/helpful through the opposite. The fact that your GP knows that a TSH under 2 isn't anything to be afraid of gives me a little hope that yours might be more enlightened than the average. BUT whether you do or not, you definitely need to know what your T3 is for yourself. Once you know it, let us know here on the forum, and you can figure out what next.
Can you share your results (with reference ranges and dates taken) for B12, D3 and Folate and Ferritin if you have them?
and multivitamins.
Multivitamins aren't recommended by those on this forum. If you are hypo, you need to look at them differently for many reasons, but importantly, multis usually have too little of the things we hypo folks needs, too much of some things that might be harmful, and then a whole lot of stuff that simply doesn't matter at all.
I had a review with the GP upon receiving the above results and she advised that optimal TSH is under 2 on levo so she upped to 100.
It's not that "optimal TSH is under 2" it's more that by experience we see that hypo folks tend to feel better when they are low. It's very important to not make the assumption that TSH "CAUSES" anything. It does not. It is an indicator (and a bad one at that) of what our T4 and T3 is doing. That being said, this increase was probably a good move... but I can't stress enough that at your levels there is absolutely no way to know without knowing your T3. Also, what was your T4 12 weeks ago? Before the increase?
SlowDragon enquired as to brands of levo - these seem to change every time I receive a prescription. Is there a brand I should avoid?
Brands are different, and everyone responds to them differently. But yes, changing brands can create symptoms due to the fillers used (and maybe some other things I'm not remembering.) Brands are one of the constants we want to see with our treatment, so if you are feeling better/worse, you can eliminate the brand change as a factor. You can keyword search this forum for any of the brands and prob get an idea of how it is very important for many people. I think I recall recently that Teva isn't as well tolerated as others, and with all else the same, people switching off of that brand clears up some symptoms. But again, search and you'll see, and realize that it is different for everyone.
EDIT: this post was linked right under this one on the same page : ) great convo about experiences with different Levo brands: healthunlocked.com/thyroidu...
Suggest you wait it out …..and see how it settles in 6-8 weeks
Then get FULL Thyroid and vitamin testing
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I have never had any problems, I have a blood test once a year, never been told the result. I do not take anything else for my thyroid, same amount for 18 years. Never knew about periods as I started at over 50. hope you get help with your problems, I was told if I do not take Levothyroxine I would be very ill.
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