I've been prescribed levo recently and am currently struggling to work out what does works for me and doesn't send me into a jittery, irritable mess.
I can't remember blood test results exactly but something like 6.8 TSH and low T3. All my other bloods were fine. I've been on a super healthy diet and supplement regime as I am a 42 year old doing IVF. Antibodies were low/negative. I do have villigo and primary Reynaulds so a few auto-immune things going on.
The GP started me on 100mcg straight off the bat. Within 7 days I was a jittery mess, so I stopped taking it. They suggested dropping to 50mcg but I suspected that was still too high. The fertility consultant suggested starting on 25mcg so I pushed for that instead. I've been tracking each dose, the cumulative levels and side effects over time. Just 25mcg (Teva unfortunately) and I had a horrific two weeks of post-nasal drip (GP doesn't think related, the internet/Mayo clinic disagrees - I suspect could have been the acacia/mannitol in Teva and/or the too low dose), so I started alternating half of a 100mcg Accord tablet one day, 25mcg Wockhardt the next.
3 weeks later and again I can feel myself having this constant irritability and dry mouth, feeling a lump in my throat like I'm about to cry, needing to go to the number 2s far more often than normal and it seems like my hair is falling out more. Went back to the GP and he thinks it has nothing to do with the levo (so frustrating that they know so little about this) and told me I need to continue on the 50/25mcg plan for another 4 weeks and have another blood test. This seems like madness to me that I am clearly showing signs of overmedication but he wants me to continue. I'm just not willing to do so as all of my relationships and work is suffering because of it!
I think I'm writing here to ask a few things:
1. Anyone else have the lump in throat/dry mouth/irritability from Accord? Or is this more likely to be an overmedication symptom?
2. Anyone come across any studies etc showing the link between non-allergic rhinitis/PND and low thyroid?
3. I've seen a few places that suggest taking levo does not top up the natural amount produced by your bodies but this doesn't seem to fit with what the fertility consultant is recommending, or with my experience so far. Where does this idea come from? Does this depend on whether you are positive for antibodies?
Based on how I'm reacting to the levo, I'm planning to just reduce my dose to 25mcg per day except Sat and Weds when I'll take 50mcg (I only have the Accord for this at the moment but plan to get Wockhardt and see if I get the side effects then), giving an average of 32mcg per day. Anyone see any major issues with this approach?
This whole process is exasperating isn't it? Thanks in advance for any advice/assistance!
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RuthieRuth
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Hi RuthieRuth "Where does this idea come from? Does this depend on whether you are positive for antibodies?"
No , not related to antibodies , it's just the way the HPT axis works (Hypothalamus /Pituitary/Thyroid) it's a feedback system.
How it works (in theory) is :
before you start levo , TSH (Thyroid Stimulating Hormone) is high , so thyroid is being asked to make as much T4/ T3 as it possibly can .
once you take some levo, the fT4 level goes up , and as a result the TSH level goes down a bit, so the thyroid is not being asked to try so hard ,and so it's production of T4 is a bit less.
eg. very over simplified example :
lets say you need T4 of '15' to be well, but you only have '10' from your thyroid, so you add '2' .. and (briefly) you have '12'
but after a few weeks , the TSH lowers in response to the rise in T4 , so this lowers the thyroid's output, and then you only have '8' plus the '2' you added .. so you increase the dose , to '4' then you have '12' again .
This balancing act continues until you have enough T4 and TSH stays stable.
trying 32mcg / day sounds fine, but note, you do need to be on a stable dose for 6 weeks before TSH / fT4 / fT3 blood tests are any use. because TSH takes a few weeks to change/ stabilise in response to new dose.
Thanks tattybogle, this makes sense to me. Though I am still left thinking that there is a "top up version" of how this works here - if my TSH at 2 pumps out say 7 of the 15 FT4 I need, then I only need an extra 7 from levo, whereas someone else with a TSH at 2 may only produce 1, so they need an extra 14 from levo (twice as much as me). Or am I going to need to increase my dose regardless? I cannot tolerate all the side effects at the moment so the idea is not appealing at all.
in our arbitrary example ... you would expect the person whose thyroid was only able to produce '1' to have a much higher TSH than 2 .. more like 20 . or 50
But theory aside . because the truth is we can't generalise about this stuff .... the only way to know what will happen to an individual , is to try a dose and see what happens to their fT4 / TSH / fT3 and symptoms.
beware of assuming that how you feel at 7 days , or 2wks ,or 3wks ,or 4wks ,on a new dose is 'how that dose will feel' once the body has acclimatised to it and you are on a consistent dose.
Whenever i change dose (up or down) , i expect to feel all sorts of weirdness for the first 5 weeks .. it's a little like a pendulum swings too far before settling in the middle again .
if i raise dose , it feels 'too much' for a couple of weeks then gradually settles .. if i lower dose it feels 'not enough' for 2/3 wks then gradually settles.
usually by about 5/6 wks i'm starting to get a fair idea of how it will feel., but 2/3 /4 wks is too soon to tell .
you will need to bear this timespan in mind .. if there is one thing guaranteed to make us feel unwell it's changing dose up and down every few wks. the body's balancing system is very finely tuned ,, it doesn't like sudden jerks and you've just had a couple of those by starting at 100mcg then dropping to 25mcg.
There's a lot to be said for starting at 50cg and just sticking it out for a full 6 wks to get a reliable blood test.
Many of us think starting at 100mcg is asking for trouble .... it's done to save time , but you are not the first person who's found it too much to start on and who's had to go back to the beginning, taking longer overall.
Thanks, that's v helpful - although when you say "all kinds of weirdness" do you also mean having all the symptoms of being overmedicated? How long should I tolerate those symptoms before I can know if I am in fact overmedicated? Am going to work on getting Woockhardt brand for all days so at least I have only one brand medication and can rule that out. Maybe the overmedication symptoms are from the Accord not agreeing with me somehow
"do you also mean having all the symptoms of being overmedicated?"
Yes i do , (and vice versa , if dose lowered~ all the symptoms of being undermedicated)
and definitely longer than a week .. even if i felt totally hyper i'd still give it 2 full wks to see if it settled a bit before starting to worry .. and even then i'd try to stick it out till 6 wks . Symptoms can be misleading ,especially if we've made changes to dose in the few wks previously .. everything including symptoms is on a bit of a delay, so until you get a blood test on a stable dose you're pretty much fishing in the dark , and the only way to get a blood test is "same dose for 6 wks"
this reply is assuming a reasonable/safe dose taken, and small adjustments of no more than 25mcg .. eg . i wouldn't tell someone to grit their teeth and ignore it for 6 wks if they said they had symptoms of hyperthyroidism after adding 200 mcg Levo / or 75mcgT3 , i'd suggest they to reduce it as i'd expect the overmedication to worsen if they continued on that dose . But you're on a v. small dose , so it's more likely that how you feel will start to settle down if you give it time.
Thanks SlowDragon - the lump in my throat symptom goes away when I reduce the dose, so I strongly suspect it is overmedication that is causing this, unless it's something specific to Accord. The fertility doc was only prescribing 25mcg so I'm already taking more than his starter dose!
Well it’s more likely under medicated…..when you only take 25mcg your TSH won’t drop so low
if you don’t want to take 50mcg
Recommend you stay as you are on current dose schedule
25mcg per day except Sat and Weds when I'll take 50mcg (I only have the Accord for this at the moment but plan to get Wockhardt and see if I get the side effects then)
BUT you need same brand levothyroxine everyday
Rather than 25mcg and 50mcg …..you might be more stable on 25mcg 3 days and 37.5mcg 4 x week (cutting a 25mcg tablet in half)
Wockhardt only make 25mcg tablets
Accord only make 50mcg
Mercury Pharma/Eltroxin by Advanz available as 25mcg and 50mcg
Teva available as 25mcg and 50mcg and lactose free
1. Anyone else have the lump in throat/dry mouth/irritability from Accord? Or is this more likely to be an overmedication symptom?
I've never taken Accord, because I don't live in the UK. But, I had the lump in throat before - long before, actually - I was medicated. I get irritability when my dose is too low. These symptoms sound to me like hypo symptoms and you are under-medicated, not over-medicated.
You started out with a TSH of 6.8. Despite what doctors might have told you, that is pretty hypo, even though it's not that much over the top of the range - we see people on here with a TSH of over 100. But, when you consider that a euthyroid (i.e. no thyroid problems) is around 1, it's pretty high. So, 25 mcg levo is not going to send you into over-medication. Far from it. It's more likely to send your TSH even higher.
50 mcg is the normal starter dose for the majority - except for the very old and those with a heart condition. And the protocol is to retest after 6 weeks and increase by 25 mcg. And continue in that way until all symptoms are gone and the patient is well. So, yes - Or am I going to need to increase my dose regardless? - you are going to need to increase your dose until your TSH comes down to around 1 or under.
2. Anyone come across any studies etc showing the link between non-allergic rhinitis/PND and low thyroid?
I've never come across any studies myself, but it is mentioned in most lists of hypo symptoms.
3. I've seen a few places that suggest taking levo does not top up the natural amount produced by your bodies but this doesn't seem to fit with what the fertility consultant is recommending, or with my experience so far. Where does this idea come from? Does this depend on whether you are positive for antibodies?
tattybogle answered this question very well, and I can't add much to it. The thyroid needs to be stiumlated by the TSH - Thyroid Stimulating Hormone - to be able to make hormones. If you reduce the TSH, it cannot make hormones, so there would be nothing to top up. I'm sure the fertility consultant didn't suggest that 25 mcg would be all you were going to need, did he? He probably took it for granted that you knew you would require increases in dose as you went along. All hormones need to be started low and increased slowly so a not to shock the body and cause more problems than they solve. It was your GP who was a little thoughtless in starting you on such a high dose. 50 mcg would have been more appropriate.
if my TSH at 2 pumps out say 7 of the 15 FT4 I need, then I only need an extra 7 from levo, whereas someone else with a TSH at 2 may only produce 1, so they need an extra 14 from levo (twice as much as me).
No, that is not how it works. It would be so easy to treat hypo if everything was linear like that. But, it's far more complicated. For example, you cannot just assume that everyone's pituitary (TSH is a pituitary hormone) works perfectly. If )one persons's FT4 was say 15 (12-22) and there TSH was 20, another person with an FT4 of 15 (12-22) might have a TSH of 25, depending on how sensitive their pituitary was. And this is the mistake so many doctors make when they rely solely on the TSH as a thyroid marker: not all pituitarys are created equal. Some work better than others. After all, if the thyroid can break down, so can the pituitary, it's only another gland.
So, forget the TSH, anyway. It's the least important of the blood test markers. FT3 is the most important - which they rarely test! - and second is FT4. But, remember that not all doctors are created equal, either: some know what they're talking about and others have no idea!
Since you are doing IVF you really must treat your hypothyroidism. If left untreated or under-treated you reduce your chances of conceiving at all, and if you do conceive you increase your risk of miscarrying.
One way of explaining why Levothyroxine is difficult to tolerate to start with is :
When people have low levels of thyroid hormones the body starts to try and keep them going by increasing their levels of cortisol, one of the stress hormones. Cortisol is not a good substitute for thyroid hormones but it is the best the body has.
One thing to be aware of is that some hormones don't change their level very quickly. So, when you start adding thyroid hormones your levels of cortisol may stay higher than ideal for you for quite a long time before eventually the body starts reducing it due to the increase in thyroid hormones.
Based on anecdotes on this forum, and from my own personal experience, I would say that the longer someone has been hypothyroid and untreated the harder it is for the body to adapt to Levothyroxine.
Starting at a low dose (25mcg or 50mcg or alternating between the two) and gradually increasing every 6-8 weeks might make Levo more tolerable for you. I would also suggest that you experiment with different brands to see if you can find something that agrees with you. Regular testing is essential.
As part of the basic treatment for hypothyroidism that applies to everyone it is really important to find out your levels of basic nutrients because so many of us have poor absorption of nutrients due to gut issues : Vitamin B12, folate, Vitamin D, ferritin (iron stores). If ferritin is either low or high it is worth doing an iron panel too as well as measuring CRP, an inflammation marker - it can highlight other problems that might otherwise be missed.
Other things that some people get tested :
Zinc, copper, selenium.
Another thing worth considering - as long as your kidneys are functional - is magnesium. Testing for magnesium is pointless, but most people are low in it and if their kidneys function they can supplement and their kidneys will get rid of any excess via the urine.
With low (or very high) levels of nutrients you reduce your own health and possibly the future health of any offspring.
It is worth pointing out that what we should be aiming for in relation to nutrients is "optimal" not just a result anywhere in the reference range.
Another thing to point out is that "optimal" isn't at the top of the range or even in the middle of the range for everything - it varies according to the nutrient.
If you get nutrients tested then you can post the results on the forum and ask for feedback. We need the name of the test, the result, the units of measurement, and the reference range. We can suggest whether or not your level is optimal and if it isn't we can often help with some suggestions on how to improve your results.
Sorry my mistake, it was my T4 that was low. TSH was 6.76 (normal range 0.49 - 5.23), FT4 was 10.8 (normal range 11.5 - 22.7). I do think the fertility consultant was recommending 25mcg and not expecting that that would need to be increased.
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