I’ve been underactive for quite a while now and on 50 Levo a day for a long time, in that time I’ve been told I’m b12 deficient low iron the lot but I can’t help but think it’s actually all down to my thyroid? Had these tests done today and doctor has advised to up to 85 levo a day, I feel such terrible exhaustion, brain fog, dry eyes, aching pins and needles the list goes on but struggling to determine is it thyroid, b12 deficiency or peri menopause? Soooo fed up please help I just want to know what to take to feel better xx results attached FREE T4 is 9.7 pmol/L that’s the lowest it’s ever been, would I feel this bad with those results? Xx
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Dondays
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Get 25mcg dose increase and retest again in another 8 weeks
Unless extremely petite likely to need further increases in dose over coming months
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.
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).
Hi there, yes I looked back on previous posts and I don’t actually know what I was on about as didn’t stay on 75 for 4 years at all I was on 50 for 4 years then alternate days on 75, GP has now advised 75 every day, I weigh 96 kilos, and my vitamin bloods are as follows :
Vit D - 61
Ferritin- 60 (had iron infusion 4 months ago got it up to 189)
Folate - 9.3 ug/l
B12 - 1327 (I’m on 12 weekly jabs last one 18th December)
Just starting a regime of turmeric, iron vit d and magnesium along with fluoxetine and thyroxine
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Your TSH is very very VERY high… typically indicating a need to increase Levo. I haven’t read all replies here but I am sure someone has said that 50 is a starter dose, and all of us end up titrating up to at least 75 by the time we get educated about it all.
Your TSH does not cause symptoms. But it is an indication that your body is calling out for more T4 and not getting it. On Levo, generally by the time we feel better we find out TSH at 1 or below.
So it’s not the TSH “making” you feel bad. It’s the presumption we make that your Free T3 is low , because it relies on T4 … and your Free T4 is really REALLY low.
I have been on 75 now for a week but the anxiety since upping the dose is horrific, I have had a panic attack today in work and a very horrible intrusive thooght out of nowhere doctor advised to drop to 50 again immediately as I can barely keep my eyes open either and just feel off kilter, what does it mean if t4 is low? What should it be? X
I gave up on listening to tsh levels a long time ago. I take vitamins selenium and eat what I want. It's not normally the thyroid that is the problem, there is an underlying issue and it seems we each have to find our own, because our bodies are different. Best of luck my tsh is over 9
I have just been upped to 75mg but the anxiety is unbearable I’m currently sat in the canteen at work just had a massive panic attack after an intrusive thought xx
Panic and anxiety can be due to under medication and hypothyroidism as well as hyperthyroidism. How about taking 50mcg one day and 75mcg the next, and alternate.
Dondays I'm replying to the bottom of this thread, as your replies above will be lost to anyone else here as they won't get alerts.
As klr31 indicates, and as SlowDragon detailed - 50 mcgs is too low for anyone unless you are a child or very petite.
That being said:
1) Levo increases will create volatility in your bloods for about 4-8 weeks. We all go through it. Heart palpitations, anxiety (like, free floating anxiety that has nothing to do with circumstances) are common. I have gotten really good at knowing the difference between what used to be normal worrying or stress or anxious feelings that are due to something happening in my life (working too hard, stress from raising a teenager lol, even worrying about this disease we have...) VS that anxious out of nowhere feeling of dread that has nothing to do with anything that's happening. It is your blood chemistry.
Remember that anxiety is a SYMPTOM. NOT a root cause that needs treatment. Many people here are put on anti-depressants unnecessarily. When your Free Ts optimze, the anxiety almost always goes away. If it doesn't you can cross that bridge when you get there. But only after your Free Ts are optimal.
Symptoms of being UNDER medicated can be the same as OVER medicated. That's why we look at your bloods - and at the low starter dose you we on, and your UNDER RANGE/BOTTOM RANGE T4 you have is all saying you are UNDER medicated.
That's why all your responses here are certain that you need a Levo increase. NOT a decrease.
2) 25 mcg jump can be too much all at once. Personally I increase at 12.5 for a few weeks, this last increase I did a 12.5 increase for the full 6-8 weeks. The slow turtle wins this race, not the speedy rabbit!
Our hormones need LOW AND SLOW increases. Even with low and slow, you can expect a bit of volatility in symptoms and blood results as you are patient through 6-8 weeks. There are many posts here for people mustering all the patience they can find in themselves to get through the increase.
Personally, I had to be talked off the ledge a few times, and there are many posts here that had people talking about how hard it is to be patient at weeks 1-6, and how everything settles at 5-6-7 weeks on a new dose.
The one thing you should not do it give your dosing whiplash in that 6-8 week period. (Again, because we know from your bloods your TSH is too high, and your FT4 is too low.
3) We aim for a TSH of well under 2 and targeting 1 once we are on Levo. Also, although everyone is different, GENERALLY we find that we target a Free T4 at 60-70% through range.
You asked what it means when FT4 is low. Free T4 is the inactive thyroid hormone that our bodies then convert into the usable Free T3. Although it is Free T3 that is the most indicative/correlated to actual symptoms (ie, it is Free T3 that CAUSES symptoms), at your blood levels we can make a good guess that with Free T4 low, that you body does not have enough to convert to an optimal Free T3 level. So we are pretty sure that your FT3 is also low.
That's why we need TSH, FT4 AND FT3 all tested at once consistently following recommended protocols (Last Levo 24 hours, fasting, test as close to 9 am as possible.) These three together are the bare minimum for you personally to begin to understand your total thyroid health.
Also, these 4 - Ferritin, Folate, B12 and D3 are also needed to be optimal - underactive thyroid makes it hard for our body to absorb these 4, and these 4 are needed for the thyroid hormones we have to do their job.
So - we manage our Levo does to get our Free Ts to optimal for each individual.
We also need to optimize those 4 vitamins/minerals.
Make sense? Let us know what other questions you have. Almost no doctor understands the above, and the replies in this post. It is shocking and hard to believe, but it is very true. So keep coming back here and asking questions until it clicks for you personally. Then we can also guide you about how to navigate your doctor relationship to make sure you get what you need when they are telling you to do things that will make you feel worse.
Thank you so much FallingInReverse that’s so helpful, I will definitely try 75 every other day for 6 weeks, the intrusive thought about ending it all was really really terrifying as was the panic attack it was enough to make drop back down as the doctor said, I will push through though I just want to feel better, my doctor won’t test for t3 so is it something worth getting done privately? Is there any point in testing if NHS won’t prescribe T3?
I think I’ve seriously underestimated over the years how awful and underactive thyroid is, I was also diagnosed b12 deficient last year and low iron so I’ve been focusing on those levels and completely ignoring my thyroid issues
Hi - so I have not combed through all your history here but as a group those of us on the forum:
* 100% almost everyone needs to go Private at some point. Of course there are many people hypo who are NOT on this forum, and everyone has different luck with it all. But generally the NHS does not get the blood tests that you as a hypo person need to manage your health. You can search this board or start a new post if you need details on that. I see medichecks a lot, but I am not in the UK and really don't know.
There are two battles to fight:
1) Knowing what you need
2) Getting it from the NHS
In an ideal world, our doctors would help us with #1. But they don't. So you have to do it yourself, and then with confidence and support from this forum you can advocate for yourself with the NHS.
* Anxiety and ending it all.... it's your bloods... all is not lost! There is hope. When we feel like that it is terrifying and terrible. Remembering that LOW AND SLOW is really helpful. And that any abrupt or too high or too fast changes to your thyroid hormone replacement will create very unpleasant feelings! I went from 50 to 62.5 (by splitting my 50 into quarters!) and did that for a full 8 weeks. I am currently taking 8 weeks to go from 62.5 to a full 75 and this time around I feel ZERO impact.. no palpitations, no (additional or unmanageable) anxiety.
You might also start a new post (or search others here) for recommendations on whether you should do 75 every other day, or 62.5 daily or otherwise. Again, I haven't re-read all the details of your dose history. But low and slow in any case - and STAY ON THE DOSE UNCHANGED for 6-8 weeks.
* And good for you for tackling B12 and Iron. We have to check all those boxes and each of us do it in various order. The underlying cause is indeed underactive thyroid, so I'm happy you have finally gotten to that step, and your improved B12 and iron will serve you well as you do.
EDIT: Also, you need FT3 tested because as you start out the first course of action is an increase in Levo, which increases T4, which then converts to T3. You don't get your FT3 tested because you want to get Liothyronine (T3) prescribed. You need your FT3 tested so you know if you need a Levo increase.
Once your FT4 optimizes to about 60-70% through range... then we look at where your FT3 is and determine if you are a "poor converter". Ie, many people are Levo only, and enough converts to FT3. SOME people get their FT4 to 60-70% through range and find their FT3 doesn't increase accordingly. Then we tackle the big task of fighting the NHS for a T3 prescription, or some people get it on their own.
But one step at a time. Get through your current Levo increase, and figure out how you will get your full blood tests done then.
Great! But come back with a new post whenever you have questions or worries.
We are all very much the same, while also each very different.
So everything you describe here sounds familar - anxiety or heart racing and all sorts of things. But only you know everything about your own individual situation, so come back here or call your doctor if you need to.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
doctor advised to drop to 50 again immediately as I can barely keep my eyes open either and just feel off kilter, what does it mean if t4 is low? What should it be? X
Request for levo increase 
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