Hi everyone. I'm a newbie and posting for the first time. I've been on 25mcg levothyroxine for only 6 weeks now and have review tomorrow. Last week I was feeling really great and hugely improved. I couldn't actually believe how much better I felt. Today I feel awful. What happened? It feels like huge step backwards. I might have a virus as I feel fluish but out of breath and sluggish, sleepy and palpitations. Would this happen if you caught a virus or infection?
Thanks
Hi, you will probably find that your daily dose will be increased, then another blood test in 6 weeks, until it's balanced. It can take time but stick with it
Thank you
I would imagine that what happened was, your body was thrilled to be given some much needed hormone, but then realised it wasn't enough. It happens all the time. You feel great for a while, and then the symptoms come back. But, it's not a step backwards, it just means that you need an increase in dose. And, this could happen several times until you finally get on the right dose.
With hormones - all hormones - you always have to start low and increase slowly. You need to give the body time to get used to having more hormone before you increase again. You cannot just go from zero to whatever your doctors thinks should be your optimal dose in one fell swoop. For one thing, what he thinks is your optimal dose might not be, so you need to go slowly to find out, seeing how you feel after each increase.
So, when you say you have a 'review' tomorrow, what exactly does that mean? Are you having blood tests tomorrow? Or have you already had them and going to discuss them? If you are having them tomorrow, here's a little patient to patient tip to get the 'best' results: leave a 24 hour gap between your last dose of levo and the blood draw. It's doubtful your doctor will tell you this, but if you take your levo before the blood draw, all you will be testing is the dose you just took, not your normal average circulating level. It's also best to have your blood draw before 9 am, and fast over-night. But, possibly it's too late for that?
In any case, remember to ask the receptionist for a print-out of your results. If you live in the UK, it is your legal right to have one. You need to know exactly what was tested, and exactly what the results were - post them on her and someone will explain them to you. And, you need to keep your own records. 
I've had my bloods taken and did the fasting and no meds for 24 hours so tomorrow is a results discussion. Thanks for the reassurance, I was a bit worried about feeling bad again. I will post results here tomorrow.
OK. Good luck!
I've just had a light bulb moment and looked at the brand of levo. The first box was Mercury and the 2nd is Teva. 4 weeks on Mercury and a week on Teva. Maybe this has something to do with symptoms relapse. Otherwise as I said before I have felt unwell with a stomach upset since Saturday and absorption may be compromised. Maybe you can throw some light on this.
Well, a lot of people do feel bad on Teva. And it's wasn't very nice of your pharmacist to change your brand, like that. By now, they really should understand that a lot of hypos cannot tolerate chopping and changing brands. So, yes, that could have had something to do with it. Impossible, of course, to know what was down to what, but see if you can persuade your pharmacist to always give you Mercury, as you felt well on it. Or else, change pharmacies.
Very much agreed, greygoose.
The only problem is that there appear to be difficulties with the supply of 25 microgram tablets other than Teva. My usual pharmacy couldn't help, second try could only supply Teva in all doses, third managed but I got the distinct impression I was lucky they had a few boxes of 25 microgram Mercury Pharma left.
Just another example of how low we are held in the esteem of the medical profession. Surely if doctors and endos exerted pressure on the manufacturers they could get them to produce a greater range of doses, no? In France, where we don't have much choice of brand, you can get levo doses from 25 mcg to 200 mcg, going up in steps of 25 mcg. So, if your dose is 175 mcg, you just take one pill, no messing about. If they can do it in France, surely they can do it in the uk!
If we had 25, 50, 75, 100, 125, 150, 175 and 200, I'm sure that instead of managing to run out of one dosage, they'd run out of all eight - and probably on a regular basis.
If both Mercury Pharma and Wockhardt 25 microgram products are not available, it is a damning indictment of the whole system.
In some ways, our system (ignoring Teva it consists of only 25, 50 and 100) has advantages. First, simpler to manage from a supply point of view. Second, say someone is on 100 and gets incremented to 125. If, after a short while, they feel that was wrong and they want to revert, they can. (Though that isn't so easy if they went from 75 to 100!) Third, most countries which have many dosages available add colours to help with identification. I don't think we want any added ingredients.
The boxes are different colours, but not the tablets. And, the whole system works perfectly well. I was on levo for several years and never had any problems with it not being available - besides, there tends to be a pharmacy on every street corner, here, so if one doesn't have it, you just go next door!
My results are as follows. Tsh was 3.6 (. 35-5.5) now 2.14 after 6 weeks on 25mcg. Free T3 3.7(3.5-6.5) which hasn't changed since initial test 6 weeks ago. Free T4 12.3 (10.0-19.8) My peroxidase antibodies originally 263 (0.0-60.0) but not retested.
She has increased my dose to 50mcg now.
As you had a positive result for Hashi's, there's no need to retest the antibodies. You have Hashi's, and that isn't going to change. Antibodies fluctuate, but you will always have Hashi's.
25 mcg was a very low starting dose, you should have been started on 50 mcg. As you see, and as we would expect, 25 mcg didn't make much difference - and could even have caused your TSH to rise, rather than decrease. But, it is still too high, and your Frees are very low. It will probably take several increases to get your Frees to a level where you feel well.
I think she was reluctant to even admit I had a thyroid problem at all until I insisted. She didn't pick up the anybodies at all. As I'm over 50 she started on 25mcg. I see now it was too little.
If there's one thing doctors hate - even endos! - it's diagnosing and correctly treating thyroid conditions. They just don't want to do it. Probably, because they know they know so little about it, they don't feel confident. So, they will try their utmost to avoid it, leaving so many people sick and suffering. It's a huge scandal. And, you're probably going to have to continue insisting to get the right treatment, for the rest of your life - unless you manage to find a more enlightened doctor. They do exist, but they're few and far between. I doubt she even knows what the antibodies signify.
caroline - The way I feel after a dose increase is very similar to what you describe. I have called it my "puppy party".
You know how it is, a puppy wakes uo, all energised and races aroudnfor a while, then keels over exhausted? It's like my body is so excited to have some help it actis like a puppy, then runs out of steam.
I still haven't reached my purple patch where the puppy can grow up and behave more sensibly yet, after a year, so patience can be required in this game.
Now, where did I put my patience?
Just to add, I don't get on with TEVA, but more from the perspective that it upsets my tummy a bit.
In reply to your second post
It's far too soon to consider adding T3
GP should increase Levothyroxine to 50mcg (the standard starter dose)
Bloods should be retested 6-8 weeks after EACH dose increase
Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Vitamins need to be optimal too BEFORE even considering adding any T3
Feeling disappointed 
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