Levels normal but persisting symptoms.

[SovietSong]

Hi everyone, not posted on here for while, just looking for some advice on my most recent thyroid test.Been on increased dose 125 Levo many many months now and though to me my levels look ok I still have the same ongoing symptoms, constant light-headedness/brain fog which seems worse on waking and some gastro issues(excess gas, constipation). I also had raynaud's in my fingers few months back which has settled with meds.Could this be thyroid related?It was suggested on here that I may benefit from another slight increase.Had my vitamins tested using monitor my health and all are normal.Any advice welcome thanks.

[greygoose]

Personally, I'd want my FT3 higher than that. It's low T3 that causes symptoms. But, I wouldn't want to increase my levo because that would probably take the FT4 over-range. You're not a very good converter, and what you need is the addition of a little T3 to your levo.

[SovietSong in reply to greygoose]

Many thanks for the reply greygoose. I'm in Northern Ireland and not even sure about how to source T3 here.Ive never heard of anyone near me take it before.

[greygoose in reply to SovietSong]

I'm afraid I can't tell you that. I live in France.

[SovietSong]

I thought maybe my gastro issues were interfering with absorbtion maybe.

[greygoose in reply to SovietSong]

Judging by those results, it's not absorption that is your problem, it's conversion of T4 to T3. Your FT4 is 96.00% through the range, but your FT3 is only 70.27%. Which, of course, is quite high, really, but not when compared to the FT4. The percentages should be closer together. Not the worse conversion I've ever seen, but not good, either.

I presume you were on 100 mcg levo before you increased to 125 mcg? How did you feel on that dose? Do you know what your results were on that dose?

.

[SovietSong in reply to greygoose]

Since starting the meds many years ago i was on 125 daily without any issue, my GP then increased this to 150( didn't have any symptoms but was none the wiser). This was then decreased to 100.After some months on 100 things just kinda hit a brick wall.I had a wide range of symptoms.Most have now dispersed. Feel like I need a prolonged period of time on the correct dose after all the changes by my GP.

[greygoose in reply to SovietSong]

Oh, why do they have to do that?!? Changing the dose just to appear to be doing something. It doesn't impress anyone and messes up the patient, but they don't care. Bunch of blood-sucking whotsits. So, yes, you do need time for your body to settle down again. If I were you, I'd leave the dose as it is for a while longer, and see if things improve. But, next time your doctor wants to play god, just because he can, just say no! Especially as he doesn't seem to know that you should never increase/decrease by more than 25 mcg at a time. So sorry this has happened to you.

[SlowDragon Administrator]

Which brand of levothyroxine are you taking

Do you always get same brand

Was test done early morning and last dose levothyroxine 24 hours before test

You could try taking half levothyroxine waking and half at bedtime…..splitting dose helps some members

Please add actual vitamin results and ranges

Is the cause of your hypothyroidism autoimmune thyroid disease also called Hashimoto’s

Have you had coeliac blood test

Are you now on strictly gluten free diet and/or dairy free diet

If not it’s always worth trying

[SovietSong in reply to SlowDragon]

hi SlowDragon thanks for reply. I had RAI due to graves years ago.I always get accord brand of Levo.Tested negative for coeliac 2 weeks back.I have cut out gluten and almost all dairy all be it I've only been doing it just over a week now.I have read that zinc and selenium can help with conversion so will try introduce more of these.I will take your advice about splitting the dose.Many thanks again.

[SlowDragon Administrator in reply to SovietSong]

I would only make one change at a time of you can’t see what’s helping or not

Perhaps wait 2-3 months before trying splitting levothyroxine if just gone dairy and gluten free

[pennyannie]

Hey there again ;

Well you could try going back on 150 mcg but this will take your T4 over range which is not recommended:

Since you have Graves and had RAI thyroid ablation I think your next best step is to think about adding in a little T3 - Liothyronine with a reduced dose of T4 to rebalance these two essential hormones.

I think I detailed everything when I first replied to you around 9 months ago and fully understand that it's a lot to take in and understand.

Constipation is a given when hypo - if that is your only symptom take vitamin C to bowel tolerance.

I'm afraid ' normal ' means nothing - other than the NHS will not prescribe and some of the NHS ranges to wide to be sensible - please share our ferritin, folate, B12 and vitamin D readings and ranges.

No thyroid hormone replacement works well if your core strength vitamins and minerals are not up and maintained at optimal levels - and optimal is what we supplement ourselves to as this co-factor is essential for overall good health and well being.

Thyroid UK - thyroiduk.org - the charity who support this forum hold a list of patient to patient recommended endo and thyroid specialist, both NHS and private.

Currently in primary care your doctor can only prescribe T4 - so you will need to be referred to a NHS endo if you wish to try any other treatment option which I am afraid is not a done deal as CCG/ICB control hospital funding and financial constraints can outweigh patient medical need.

So you are allowed a 2nd opinion , and one of your choice, so a recommendation, if there is one might be useful and save some time and a whole lot of stress. Many medics are doing video consults so distance from home does not have to be a factor if you know who you want to be referred to.

You can also start a new post asking forum members for opinion on someone you think you want to see - and replies from forum members will be through the Private Message system, and the paper plane icon above lights up if anyone replies as we are not allowed openly to discuss any particular person.

[radd]

SovietSong,

You do not have a conversion problem as your FT3 levels are great but FT4 is too high. 

Levothyroxine contains only T4 and the the higher in range T4 gets the lower the amounts converted to T3. It is called ubiquitination and is like the glass ceiling of T4 (see link below). 

Your meds (thyroid hormones) will work better with slightly lower FT4 levels. Another aspect is excess (the amount not used) has to be deactivated, or excreted as a bodily safety mechanism. One of the methods the body uses is to metabolise T4 to RT3 which when in excess becomes a problem in converting future T3. 

You do not have this problem now as your FT3 levels are great but members often find taking high amounts of T4 long term can result in excess RT3. 

If I was you, I would reduce Levo to 100mcg or maybe 100/125mcg alternating days and focus on iron and nutrients essential to making thyroid hormones work their best. 

thyroidpatients.ca/2018/12/...

[SovietSong in reply to radd]

Many thanks for that info radd, much appreciated.