Hi all, Diagniosed hypo in October, started on 50mg Levo, now up to 100mg (after throid became very inflammed in Nov, dose was increased), and seeing consultant again tomorrow, and I am hoping for another rise in Levo dose, as still feeling very rough with it all (although a lot better than I did in the beginning! T4 was virtually none existant 🙄). Don't have most recent blood results yet, will get tomorrow.
My question is, should I be concerned about my T3 levels, and possibly discuss this with the consultant? I have now been off work for 4 months, am now on half sick pay, and generally have very little enjoyable or useful life at the moment. Really hoping I do get a rise in medication, as I am unable to contemplate working right now (I might manage 1 quiet day, but not consistently!), but really need to get back to work as soon as possible. I admit I don't really understand the T3 side of things, altough I have been trying to research it.
My current symptoms are, I think, typical hypo ones, exhaustion and out of breath after minimal exersion, brain fog, mental exhaustion, muscles tire easily, nails and hair in awful state, etc.
Sorry for the short notice, but anything in particular I should bring up at my appointment tomorrow? Thanks in advance all, really appreciate hearing from others with experience of this condition.
Oh, although I have had Type 1 diabetes from the age of 5, my antibody test was negative, so not Hasimoto's, which suprised me, as the symptoms seem to hit quite quickly and severely.
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Mrsdeepsleap
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not yet, hang fire, see the specialist, get FT4 up in range first. Repost your FT4 and FT3 results when you get them, these are ideally after 6-12 weeks on this higher dose? If increasing Levi again wait again 6-12 weeks, test again.
The tricky bit is being patient when you are nearly there in terms of dose. Overshooting and changing too quickly brings more challenges so take it slow and steady, keep a symptom diary. Only move towards T3 if you have a stable 8-10 weeks and blood test shows T3 still low in range compared to FT4.
Also bear in mind that all sorts of variables affect your cells abilities to convert FT4 to FT3, diet, inflammation, leaky gut, low ferritin, B12, Folate, D, Zinc, Selenium l. magnesium etc all have a part to play on getting Levo working for you, as do things like gluten, dairy, taking an hour before food etc.
Many thanks. I take my Levo at least an hour before any food or medication and caffeine. I also take Solgar B vitimin B Complex 100, and British Supplements Mega Magnesium Triple Blend. B12 level was tested and is in good range. Will try gluten and dairy free (although I eat very little dairy), anything to feel more like I used to!
Out of interest - what are the challenges that occur with overshooting? I'm tempted to see whether a higher levo dose might work for me but people keep saying these non-specific things about how that's a bad idea. Curious as to what they actually are - could you add any detail at all please?
My experience was sleeplessness, tiered and wired feeling, loose bowels, palpitations, raised heart rate, sweating face, anxiety. Had to drop back down and wait from Sept to Feb to be hypo again with all the slow, mail aide, exhaustion again and then gently build back up. Took just under 12 months and was miserable. Nearly did it again this summer, caught myself in time and dropped the dose and kept testing. Steep learning curve for me.
Don't you think that as we are all very different+react very differently to levo doses that our hyper symptoms (if overshooting) will be different, too? Some if us have no problem with whatever levo tabs we receive, whilst others have huge issues. For me, 40+ years ago after thyroid gland removal+no levo given after op, my GP went ballistic after my blood test came back as my levels had crashed (horrendous symptoms)+he put me straight onto 200mcg ! I had no problems whatsoever on that large initial dose whilst others would have had mega issues, i am sure. I'm saying all this to reiterate how we are all so different+respond so differently to either levo or T3. Again, on T3 I've had no issues+jumped in@10mcg + upped to 15 with no problems, just wonderful results! Sorry for meandering but just emphasising 'different' , which we all are! What works for one may not work for another and you can't necessarily follow what someone else did for the same results! Here endeth my waffling!!
Thanks Regenallotment, yes I had a similar experience when they started me on 100mcg despite still having a thyroid and only being slightly over range in my TSH. I've been watching out for those overmedication symptoms ever since but having taken my dose increases slowly seem to have avoided them entirely!
I keep reading about some people feeling a bit wired for a week or so around week 5 but it hasn't happened for me, so I wonder if I'm not on a high enough dose. If I went from 137.5 to 150mcg and felt overmedicated then I would have thought that would be a relatively easy drop back down to 137.5 without it taking a year?
But maybe as Lottyplum says below we are all different so this is just my experience.
people feeling a bit wired for a week or so around week 5 but it hasn't happened for me, so I wonder if I'm not on a high enough dose.
Agree with everything said above … we’re all different, it’s trial and error.
I am one who had a horrible time with 10 t3 daily added at once… and I am also one who goes nuts at week 5 of even a 12.5 Levo increase. Lottyplum Im jealous!!
It could have been that I was very under replaced through the whole thing, who knows..
I chuckled at your comment I bolded above.
I am close to optimal at this point, and the closer I get the fewer symptoms - the longer I wait on a dose change, the calmer it gets.
And I take that calm for granted until symptoms break through.
A month or so ago I asked the forum about “I feel good, but could I feel better?” The reply was - if you feel good, why not just let it ride for a while! It was very good advice.
I would say the absence of feeling wired or disrupted during a dose change means you are doing it right!
You may indeed need an increase based on symptoms/blood tests overall. But not because of an absence of a reaction during titration 😁
Make sure you get a print off of your results tomorrow. 🙂 We’ll be able to advise a bit better once we’ve seen them. Hope you see someone with half a brain… 🤞
One last thing. Just because your antibodies result was normal, it doesn’t actually mean it isn’t Hashimoto’s. A thyroid scan could shed more light on things but it’s quite likely they won’t consider it worth doing.
So, the consultant I saw (and had previously seen) was actually a neck surgeon! I totally missed that with the first appointment (having terrible brain fog). He saw me after my GP refered me for neck scan due to increased size of thyroid, and possible goiter. Good news is that the thyroid inflammation has reduced, and he feels there is no need to operate, but the blood test he did was TSH only, and that was normal (3.7, didn't give me the range)! He said he didn't test T4 as there was no point as I was on Levothyroxine!!! He has no idea why I still have the symptoms I do, and suggested I go back to my GP. He didn't want to do a CT scan of the thyroid, as it was now a more normal size, and said ultrasound wouldn't tell him anything. Have now booked to see GP Thurday next week, and feel very frustrated and upset that at the moment I can't see me getting back to work any time soon. I had so many hopes for this appointment to increase meds and hopefully get back to some sort of normal; totally my fault I misundertood the nature of the appointment, but still annoying. Guess I will need to be patient, and see what Dr and the next round of bloods say. Is it possible for your TSH to be normal, but still have low T4? I guess it is possible that something else entirely is causing my symptoms, but frustrating to be no further along after nearly 4 months.
A “normal” TSH would be 1 or below if you are taking Levothyroxine. In the healthy population TSH is rarely over 2, so your result is not “normal”. It indicates you need an increase in your Levo and you need FT4 testing. Ideal % through the range for FT4 varies depending on on who you ask, even on this forum, but between 40-80% should cover most people’s requirements as it’s very individual. That’s my opinion - I may be contradicted!
Once you have FT4 over 50 or 60% and TSH 1 or below you may want to test FT3 if you still feel unwell as that’s the hormone that causes symptoms.
Thanks for your comment; it does make you despair when a member of the medical profession, who, while not a Thyroid consultant, deals with surgical removal of the organ, doesn't even know if the TSH level is normal! Will know to be insistent with my GP when I see him to check T4 again. So glad I found this site!
There’s nothing wrong in getting your T3 level checked. Monitor my Health are a good laboratory. Also testing to see if you have a DI02 genetic mutation which prevents full conversion of T4 to T3. All evidence to guide your decisions about medication.
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