Am I over-medicated?

[SueD777]

Hi everyone.

I was diagnosed with Hashis 6 years ago but not treated as they said my thyroid was 'normal'.

After feeling awful at t he start of last year I convinced my GP to test again and sure enough it showed I was hypo:

TSH = 20 (no range given)

Free T4 = 10 (9-21 normal range)

After a year of increasing dosage of T4 up to 200mg with NO EFFECT whatsoever, I finally saw an endo who started me on t3. 

It's worth mentioning that I'm really heavy at the moment - about 19.5 stones.

So I was started on just 10mg of T3 with dropping T4 down to 150mg per day.

Finally started to see a little improvement in my symptoms with absolutely no signs of being hyper. So as you can imagine I'm really keen to go higher with t3 and start dropping T4 down.

Had bloods done again:

TSH =<0.01

Free T4 = 21 (9-21 normal range)

Had vit and iron etc all tested and now on iron supplements and vitD as they were a bit low. B12 is covered as I get jabs every 3 months for previously diagnosed pernicious anemia.

ENdo doc now saying that I'm 'over-medicated'. Only wants to increase my T3 to 20mg and drop T4 right down to 75mg per day.

I'm sure I'd get a better picture going private for bloods but I really can't afford it. 

It seems the endo has looked at my TSH and decided that as it's almost completely gone, I must be over-medicated but from what I've been reading on the forum, that's not necessarily the case right?

I'm at the point of giving up on the doc now and trying to source some T3 by myself and at least see if a gradually increased larger dose (while reducing the T4 as I understand that you times t3 values by 3 to get t4 equivelent) so that I can finally start to feel better.

Any advice would be much appreciated and if anyone can PM me with an affordable source for buying T3 online, I'd very much appreciate it.

Thanks

Sue

[shaws]

Did you have your blood test as early as possible and leave about 24 hours between your last dose and the blood test? Also did you fast?

[SueD777 in reply to shaws]

Yes,  did all those.  

[Hidden]

What was the figure on the iron test?

[SueD777 in reply to Hidden]

Iron was 10 (10-32)

[Hidden in reply to SueD777]

Did they take any other iron measurements? No wonder you're not well. Thyroid can't function properly with low iron.

[SueD777 in reply to Hidden]

Yes, they tested ferritin it was at 106 (15-200). I was started on iron supplements when those tests were done for iron 6 weeks ago, so hopefully my levels are looking a tad better now.

Thanks for your help

[Hidden in reply to SueD777]

So low iron but quite high, anyway robust ferritin.. hmm .. do you think you have some inflammation going on?

[SueD777 in reply to Hidden]

Yeh probably. My diet is not the best. I find it really difficult to eat well when I'm feeling as down as I do. The thought of trying to go gluten free atm just seems impossible. 

[shaws]

They are told only to take  notice of the TSH which is not an 'accurate' way to tell if we are overdosed or not. Usually the patient will have symptoms of overdose or feel something is not quite right.

When you were on 200mcg of levo Endo dropped it to 150mcg of T4 and added 10mcg of T3 equal, in effect, to 180mcg of levo.

He is now adjusting your hormones according to your blood test which isn't a good idea at all. The TSH is variable and not the bet way to treat us. It's fine for diagnosing initially but they should forget about it afterwards (I think).

So he is now halving your T4 to 75mcg plus 20mcg of T3 - equal to around 135mcg of levo. At least he's increased T3. It might take a few weeks for the change to take effect (about six I think), so immediately you feel worse phone his sec and tell her you need an increase as symptoms have returned.

He should also have taken a Free T3 blood test to see how much is circulating as it's the T3 that does all the work in our receptor cells.

(I am not medically qualified).

[SueD777 in reply to shaws]

Thanks Shaws. Do you know if they ever do Free T3 on NHS? If so I can push again for it (asked before but it wasn't done). 

[shaws in reply to SueD777]

I have it done, but maybe because I am on T3 only. Also blood tests don't always indicate overmedication it's our body which usually does even before we have a blood test taken. Adjusting meds due only to the blood tests can rebound on us and we suffer.

Your FT4 is top of the range so that makes me wonder if you are actually able to convert T4 to T3? As I said I'm not medically qualified.

[SueD777 in reply to shaws]

Shaws, yes the endo said that I probably wasn't converting T4 and that was why he was willing to try me on T3. 

I will defo approach testing T3 again now that I'm on t3 meds to see if he will test it.

Yeh I've really had no symptoms of being hyper and that's why I'm worried about the doc reducing my meds going only on bloods. Knowing my luck though, if he does agree to test for T3 it's bound to show that I'm 'normal'!

[shaws in reply to SueD777]

I think you should be on T3 only - what's the use of taking levothyroxine if you cannot convert it? T4 is useless unless it converts to T3 that's its particular job - conversion.

Few know anything about the DI02 gene so send a copy before your appointment.

[SueD777 in reply to shaws]

Shaws, I'd never heard of that gene before - just reading up on it now. Is it possible to get tested on NHS for it? 

I guess if I have a positive test for the gene it will help me to convince docs to dump T4.

Thanks

[shaws in reply to SueD777]

I don't think your Endo will have heard of it either.  I think I forgot to give you details.

thyroiduk.org.uk/tuk/testin...

[SueD777 in reply to shaws]

that's brill thanks Shaws x

[eeng]

Your endo should know that anyone taking medication containing T3 will have a very low TSH. That's normal. He doesn't seem to know this and is saying you are overmedicated because your TSH is low. He hasn't even tested your FT3 level, which is the important one.

[SueD777 in reply to eeng]

Thanks Eeng. Going to try adn push to get Free T3 tested now to see what's going on. Thanks for your help

[radd]

Sue,

A low TSH is fine when medicating T3. Your endo should know this & have tested your T3 blood levels as you are medicating,  as a true picture of thyroid function can't be gained without it.

Weight gain is a classic symptom of low thyroid hormone but should reduce when thyroid hormones are optimal.

I think increasing T3 to 20mcg and reducing T4 to 75mcg as per endo suggestion is right as thyroid hormones require optimal levels of low iron & Vit D to work and taking excess thyroid meds can be counter productive. 

20mcg T3 and 75 T4 = about 150mcg T4 but taking T3 direct will encourage the T4 to convert further, giving you a much higher level of T3. If you have more thyroid hormone than your body can utilise (considering your iron and Vit D deficiencies) you will end up with elevated RT3 which is really bad news.

If you can't afford tests now, it would be fool hardy to self medicate so quickly incurring the further expense of necessary blood tests should your GP/endo refuse to support you. Don't give up on your doctor yet as you are lucky to get T3 on the National Health and having the support and blood tests, etc is worth a lot. 

Many of us don't do well on T4 alone and adding that little bit of T3 makes all the difference but you need to be patient for things to work. I hope you feel better soon. 

[SueD777 in reply to radd]

Thank  you so much for your advice Radd. I think I'll look to save up to get private bloods done at the end of this 6 weeks of dosage increase of T3 to see where I'm at. 

I know I'm starting to lose patience with not seeing improvements quicker. I've been feeling really down recently and that's so unusual for me. Hopefully with things starting to happen I'll be able to see light at the end of the tunnel.

Thanks again.

[SueD777]

Thanks Eljii

[silverfox7]

Your doctor should be insisting that the labs test FT3 and write in the form that you are taking T3. It doesn't matter if FT4 is slightly over as long as the FT3 is in range but bear to the top third. If you arent converting well you are short on minerals and vitamins so I would work at increasing those as it will also improve your general health as well. 

[SueD777 in reply to silverfox7]

Thanks for the advice.  I'll push doc to test ft3.  Cheers 😀