Feel awful: So my doctor did ring yesterday,see... - Thyroid UK

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Feel awful

Tradoc profile image
19 Replies

So my doctor did ring yesterday,see previous post, and as expected was useless. Said I was a bit over

medicated and to keep going on 100 levo, which he sounded like he forgot to tell me to do . Told him I feel awful like I'm swinging between both. Didn't listen. Instead gave me an anti depressants which I do not want to take I just feel awful. My hands keep going red then ice cold white, not sleeping much and now not eating much. My arms feel like a ton weight. I told him all this yesterday but he just said some back in 6 weeks.

Any help woul be appreciated as I'm making myself anxious

T4 24.6

TSH 0.07

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19 Replies
SarahJane1471 profile image
SarahJane1471

Sorry you are feeling so bad. I think the group will need more information before giving any advice. Like TSH/FT4/FT3 and ranges.

Tradoc profile image
Tradoc in reply toSarahJane1471

I haven't had those tested as my doctor's Don't do them I have the private kit but I was advised to wait 6 weeks to do it

SarahJane1471 profile image
SarahJane1471 in reply toTradoc

So things take time on the Levo journey and a wait of 6-8 weeks is recommended to allow your body to adjust. It’s hard I know but hang in there. Read as much as you can on this forum so you understand what’s happening to you.

DippyDame profile image
DippyDame

Your previous posts indicate poor conversion of T4 to T3Have you optimised vit D, vit B12, folate and ferritin as advised

If so then you likely need to add T3 a little

T3 is the active thyroid hormone required by every cell in the body in a constant and adequate supply

If T3 level is low you will feel unwell

It would help if you have a full thyroid test and post the lab results including reference ranges( in brackets)

However, it sounds as if you have been on 100mcg levo for some time which means your FT3 is likely to be low....and getting lower.

You could increase levo to 125mcg then test in 6/8 weeks... and increase further if necessary

Depending on how effective your conversion still is that increase could raise your T3 level enough to make a difference.

Symptoms of undermedication can be similar to those of overmedication

Or, can you persuade your GP to refer you to an endo.

Suggest you either source T3 that way...or self medicate by buying it (that comes with it's own problems of supply)

Just a few thoughts.

Tradoc profile image
Tradoc in reply toDippyDame

I was on 125 and over medicated. He changed me back to 100 last week and I just feel worse. I'm taking vitd with k2 spray, super b complex and 2x 300mg of magnesium

DippyDame profile image
DippyDame in reply toTradoc

OK...

What suggested overmedication....lab results or signs and symptoms?Many medics cannot analyse lab results and go by TSH which I suspect your GP is doing.

Lab ranges vary depending on the machine used but if we take one example of range 12-24 then your FT4 result of 24.6 is slightly over range, but that is only part of the story! I suspect this is part of your problem...

If you are not converting well FT4 will be reasonably high and this will lower TSH (0.07) which panics medics...they should test FT3 at that point but often don't.

FT3 is the important lab....not TSH

Unless FT3 is over range you are not overmedicated

How long were you on 125mcg T4?

When changing dose it is not unusual to feel worse before you feel better while the body adjusts.

Some people need slightly over range FT4 in order to achieve a satisfactory FT3

This might help

thyroidpatients.ca/2021/07/...

Having checked all that out you probably still need to add T3!

Tradoc profile image
Tradoc in reply toDippyDame

Thanks . I was put up to 125 in sept after my bloods. Last week I started to feel very jittery and he took my bloods as above.I've never felt this bad changing before. I'm up and down through the day. If you can see my last post about this last week I put up my last 3 bloods . My doctor's never do T3 or never listen

DippyDame profile image
DippyDame in reply toTradoc

Those limited lab results only tell part of the story...not a good basis for dose management

Did you take the antidepressant? Some can reduce the therapeutic effect of levo.

Don't be pushed into taking them if it feels wrong.

Depression can be a symptom of undermedication...

When were you diagnosed as hypothyroid?

Going back to your first post here 4 years ago...

Were you medicated at that point?

If so, how much levo were you taking then?

At that point your FT4 was 93% through the ref range

FT3 was 35.14% ditto

Both Frees should be approaching 75% ditto

Your T4 to T3 conversion appears very poor.....at that stage your T3 was very low, you must have felt poorly then too.

Your medication should have been sorted then....but medics often fail to medicate properly. That happened to me for over 20 years!

You need to have this knotted mess unravelled and your GP seems incapable of managing this.

One step at a time...

You now need to wait until you've been on the current dose for 6, or better 8, weeks, this allows for a more accurate reading as the adjusted hormone settles in the body.

Then use the test kit you have and post the results here.

Those results will point the way forward.

Unfortunately there is no quick cure and the slow progress is very frustrating ( been there!) but being patient is vital.

Don't panic, we've all had bumpy and often scary thyroid journeys , but it will be possible to sort this out.

Hang on in there meantime and keep us posted... even if you just want to tell us how you feel and need some support along the way.

Tradoc profile image
Tradoc in reply toDippyDame

I've been hypo for over 20 years. Never did they test my T3 or even look at my neck. At the very start I was just told this is what you take and come back every 6 months. Never explained how crucial the thyroid was or anything.it was only when I start feeling bad 4 years ago and found this forum did I find out any info. I was on 50 mg for most of my life at that point.I haven't taken the anti depressants as I feel there is something else going on that's causing my low mood.

I got a thing called serdop from a kinesiologist which I've started instead.

My doctor's are so clueless it worthless even talking to them.

DippyDame profile image
DippyDame in reply toTradoc

You're correct... and you know your own body best.But you know that!

That is horrendous treatment...50mcg is a starter dose and should have been increased years ago

I'd guess your low moods are the result of undermedication and would improve with correct medication.....rather than antid's.

Serdop is a homeopathic medicine used for anxiety, it will do nothing to improve your thyroid condition

It's not easy but you need to take control....I had to do that because I was getting nowhere. It wasn't my way of dealing with things but my health was at stake and that was more important than denting the ego of ill informed medics.

Is there any chance that you can see another doctor or even go to your local A& E department....someone needs to listen to you. This problem can be resolved.

Can you take someone to an appointment with you, they may not be so quick to dismiss you if you have "back-up".

You'll find helpful info here

thyroiduk.org/

Tradoc profile image
Tradoc in reply toDippyDame

I've actually sent an email to a Dr A in Belfast to see if I need a referral. I'm sure it's going to be expensive but I need to do something

DippyDame profile image
DippyDame in reply toTradoc

Well done....the first step is the hardest!Good luck.

Keep us posted please.

Tradoc profile image
Tradoc in reply toDippyDame

Will do. I just noticed a lot of posts on here about brands. When I was on 125 it's was 2 different brands.i wonder was that part of my issue to

tattybogle profile image
tattybogle

Hi Tradoc, Those results were from taking 125mcg , so they don't mean much now ... you've been on reduced dose of 100mcg for about 7 days now .

I'm my experience . the first 2/3/ 4 weeks of a dose change are 'all over the place' as your body adjusts .. and are often quite unpleasant..... it can take quite a long while for the symptoms of being a bit overmedicated to slowly go away ( Remember Levo has a half life of 7 days) ...... and then for a little while you can even feel undermedicated... a bit like it's swung too far the other way ., but then you give it a bit longer , and it hopefully settles in the middle and over another week or so, thing slowly improve .

This pattern can happen even if the new dose is actually going to be an improvement in the long run. .. or at least it did for me.

So don't take too much notice of how you feel for the next couple of weeks .. and don't expect to feel any better until at least weeks 4/5 6 .... then get tested to see if what's happening with bloods fit with how you feel at week 6.

Adjusting thyroid hormones it a long slow game ... especially if you are sensitive to even small adjustments.

It's easy to panic , we've all done it ..... especially if you feel worse for a few weeks , but it' s best to just assume it's a 6 week process ( at least) that doesn't reveal the result till you get to the end.

As for the antidepressant's .... it's up to you , but if YOU don't want to take them at the moment , Don't .

Personally i'd want to be properly settled on a new Levo dose, so i knew what was causing what , before changing anything else .... and (assuming they are SSRIs' ? ) turning off the seratonin re -uptake receptors in your brain will definitely be 'changing something else' .... if depression due to low seratonin is not your problem, then messing with your seratonin levels won't help you find out what is.. ....it will just mean you don't know what is due to the Levo dose change . and what is due to the seratonin level change.

*edit . meant Serotonin not seratonin . bit crap at spelling, sorry :)

Tradoc profile image
Tradoc in reply totattybogle

Thank you for all this info 🙂

Tradoc profile image
Tradoc in reply totattybogle

I'm actually feeling a little better today . Still think I need some T3 but need to wait a few weeks to do my bloods . I'm not sure if you can buy without prescription to try. Instead of me paying £200 to see a private endo

tattybogle profile image
tattybogle in reply toTradoc

yes people can buy it without prescription, there are some reliable sources of proper/safe T3 ........so DIY is possible and much cheaper than playing with endos , and you don't have somebody else calling the shots, (which .... if you've enough understanding yourself , and experienced advice from others to rely on ....can be a relief )

BUT ..... if you go down that road too soon, without allowing enough time to make sure everything else on Levo is as good as it can be first... then adding T3 is not likely to be helpful .. it may even be counter productive .... so take your time to get all you ducks in a row first .

You've been left on 50mcg for years, and not had chance to even see it the right dose of Levo will be enough for you yet... this will realistically take a few months (at least )to find out ... during that time you can take the opportunity to get your Vit D . Vit B12, Ferritin . folate , Selenium etc as good as you can get them .

If it does turn out to be the case that the right dose of Levo with optimised vitamins/ minerals makes you feel better .. you will be saving yourself a lot of hassle .. it's not just the money ....as soon as you start adding T3 , you will be in for hassle from GP's wanting to mess with your Levo dose , even if you don't tell them you've added it ....because the T3 lowers the TSH , and they'll see that on your annual blood test .

Tradoc profile image
Tradoc in reply totattybogle

Thank you..I was on 50 mg in my younger years not recently. Was on 75mg for a long time then they upped it and upped it again to 125mg and now back to 100. I'll give it more time and see

DippyDame profile image
DippyDame in reply toTradoc

" I was on 50 mg for most of my life"Your time line is confusing

The labs should help.....

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