New lab results help please....

strawberrytoast

So after my yearly (YEARLY) results back it appears, according to receptionist my TSH has jumped way up to 9.34, it was 2.7 last year.
She wasnt sure if the next result was T4 or FT4- 14pmol

I had went to get blood taken with a list of things (TSH,T4,FT4,T3,FT3, cortisol, B12 ect) for them to test, it appears they have ignored me and just tested for 2 things (UK)

So i have an appointment with the GP next week, they have noted on my results it was "slightly high" PFFFTTTTT

I really wanted them to check FT3 which the practice nurse said they would Ive never felt any better on rubbish meds of levothyroxine currently at 150mg, so am going ot try my best to get T3 meds as i dont think im converting.

Any advice ladies and gentlemen, of what i should ask when at my GP??

Espressocycle

Unlike many people with hypo, your lab results make it perfectly clear your treatment isn't working, so just tell the DP to switch you to the damned T3. They are both similarly priced generic medications to treat the same condition, so I don't understand why doctors are so resistant to trying one over the other or combining.

strawberrytoast

If only it was that simple! Apparently in the UK Levothyroxine is only a few pennies per pill (few cents) where as T3 is a few £1 per pill (few $$) so they dont wanna spend money, we get supposeldy free healthcare here. I'd buy the medication online if i could afford it.

nspink

If you've been on T4 only and your TSH went up that high then that should be a good enough reason that your current dosage is not working. Finding the right dosage takes time but without trying different dosage or combination T3/T4 how are you going to get there. It takes alot of trial and error to get there but its progress, you learn what works better for you. You need to get on T3 and try it to see how it works for you. And i suggest you get retested within 2-3 months after trying T3/T4 combo. Best of luck at the Dr. Appt!

Espressocycle

T3 is a few £1 per pill

That sucks - The generic Liothyronine is 3x the price of Levothyroxine here, but still under $1/pill in the states. There are desiccated bovine thyroid supplements out there - not sure what the laws are in UK about those though. Here, you can put pretty much anything in a gelcap, call it a food supplement, and sell it to anyone with no oversight.

kcritter77

I'm not a converter either. I finally talked my Dr. into adding T3 and every time I up the dosage I feel better (and my numbers improve) for a few weeks and then tank again. I go next Tuesday and I'll be asking to switch to Armour or another natural dessicated medication. I am hoping that the natural hormone with clear the fog!

Afura

I agree with nspink, especially about getting tested more than yearly. If you need to adapt your medication to find a fit to suit you best, going yearly is going to take forever. Let alone that the dr will likely forget everything they discussed with you, or you'll have to see another one..
I've heard with the dessicated thyroid options that there's a flux is how powerful they are (general quality control, or just age I don't know), plus it'd be self medicating, which makes me a bit twitchy, unless you get your own tests done to watch your levels.

strawberrytoast

If it was up to me if get blood done every month. Once they say your levels are fine twice in a row you won't get it done for a year. Usually it's 3 months when u first go then 6 months until your stable then yearly.

I had to book the doc appointment 4 weeks in advance and its not even my doctor!

Afura

With my old endo Dr I was at one appointment a month (every 3-4 weeks), with bloodwork being done 4-5 days prior to the visit. Right now I had my first visit after being off meds for a few months and she wants me to get a solid base line with taking meds and then adjusting, but I was still scheduled for bloodwork by 6-8 weeks (2-3 months). I don't know if you can (Not sure where you are in the world), to make yourself feel more comfortable and be better armed for your next visit, but I know people that have requested their own bloodwork, without the Dr.

strawberrytoast

I decided on Friday to up my medication by 50mg to 200mg until my doc appointment this week lol, obviously only a few days but no difference. Having a grumpy angry fed up and peed off day today.

shvits

You probably need a specialist...this is way above your GP's ability. I agree with other posts that you need t 3 replacement. In the U.S. is is cytomel. My doctor only uses brand name synthroid as the levothyroxine can have a variation in dose. I strongly discourage you from increasing meds on your own as you can really run into trouble--emotional and medical. I take my t 3 med twice a day, once in the A.M. and then again at lunch. That gives me energy and makes me feel better. My endocrinologist lowered my synthroid dose and added cytomel. She got it perfect with some calculations, but then again she is a specialist.

Afura

A happy Monday for you too?If anything else maybe they'll bump your meds up when you go to your apt anyways, and so you'll just be ahead of the game.

strawberrytoast

I figure that 50mg increase would be the next bump up phase anyway, so might as well try and feel better quicker. I understand the risks and would not reccommend anyone to mess about with their medication. BUT there comes a time when this lady here must listen to her body lol. 3 days till docs, must keep hopes up

strawberrytoast

I hope im not boring people with this but i'm still sharing it lol.

Well D-day was today, doctor upping my levothyroxine by 25mg to 175mg(WOW), blood work again in 3 months. Says she cant prescribe anything else but once my TSH is in the normal range again i'll be fine :grumble:

One good thing, she says she will email the endocrinologist to see what they say/ see if i can see them, so thats something i suppose.

shvits

Yes! see an endocrinologist. T 3 replacement has done wonders for me in addition to the synthroid. Your g.p. knows little about T 3 meds and that is obvious/scarey.

survivor1952

This could be just my body but here is my story...

I have been on levothyroxine for the past year. Symptoms were not as bad but still were there (cold, exhaustion, etc.) I needed a refill before my appt. (few weeks). Called the dr. (endo) office to get a refill sent to pharmacy. I said "I need my synthroid refilled"
They called in synthroid not levothyroxine. Supposed to be same drug (generic vs. name brand)

Within a week I realized my symptoms were gone! I have not had to put on a sweater since, I have been doing well with a normal 7-8 hr. sleep at night...

I am going to endo tomorrow & want to be sure they keep me on Synthroid & not levothyroxine. So...I would consider talking to your endo & see if a brand switch could help. I would never have thought of this on my own.

Anyone else have this experience? Love to read shared experiences. Thanks for listening.

Afura

I've heard of people having issues with the regularity of the actual strength of levo, but it was so long ago I hadn't really seen anything since then (then again, how often do I look? XD ).
Glad to hear they're trying to get an actual endocrin. involved with this too. 3 months inbetween seems a bit much, maybe a month or so to have your body stabilize at the new dosage, then restest sure. Then again, I'm no dr. And the tiny bump is not a bad thing, sometimes it can be to make sure you don't go too high, and to make sure there's no issues to your heart in jumping up meds.

Maybe I'll see next time about getting put on synthroid myself. I'm tired of this feeling exhausted junk.

survivor1952

This could be just my body but here is my story...

I have been on levothyroxine for the past year. Symptoms were not as bad but still were there (cold, exhaustion, etc.) I needed a refill before my appt. (few weeks). Called the dr. (endo) office to get a refill sent to pharmacy. I said "I need my synthroid refilled"
They called in synthroid not levothyroxine. Supposed to be same drug (generic vs. name brand)

Within a week I realized my symptoms were gone! I have not had to put on a sweater since, I have been doing well with a normal 7-8 hr. sleep at night...

I am going to endo tomorrow & want to be sure they keep me on Synthroid & not levothyroxine. So...I would consider talking to your endo & see if a brand switch could help. I would never have thought of this on my own.


Update: Friday April 12 - went to endo today & asked lots of questions about meds. Here is what she told me...
Yes there is a definite difference between Synthroid & generic. There can be as much as a 15% difference inthe drug with the same dosage level. The brand will be correct level but the generic can vary. So, the improvement I experienced was real. I requested to stay on the Synthroid & no more generic.

Anyone else have this experience? Love to read shared experiences. Thanks for listening.

julysbaby

This could be just my body but here is my story...

I have been on levothyroxine for the past year. Symptoms were not as bad but still were there (cold, exhaustion, etc.) I needed a refill before my appt. (few weeks). Called the dr. (endo) office to get a refill sent to pharmacy. I said "I need my synthroid refilled"
They called in synthroid not levothyroxine. Supposed to be same drug (generic vs. name brand)

Within a week I realized my symptoms were gone! I have not had to put on a sweater since, I have been doing well with a normal 7-8 hr. sleep at night...

I am going to endo tomorrow & want to be sure they keep me on Synthroid & not levothyroxine. So...I would consider talking to your endo & see if a brand switch could help. I would never have thought of this on my own.

Anyone else have this experience? Love to read shared experiences. Thanks for listening.

In my experience, any med that requires a particular lab value to remain in therapeutic range should be used with brand name. Although there are few variations to a med, with something that needs to be so precise, it is important to have the same amount of medication in your system always. I use branded Synthroid and refuse to get generic.

strawberrytoast

Well its that time again to get a blood test, but again its just seeing a nurse first, then seeing a doc after if theres any difference. So although im gonna request they test T3 again i know its not gonna happen. Still cant afford to illegally buy stuff off the net yet. Still angry and grumpy think its getting worse. Never got to see an endo last time, apparently she had only requested feedback from them, i never went back to see what crap she was going to come out with as i was too fed up withit all.
Shall be back with test results in a week or so lol

strawberrytoast

Back, cos I know you all love my moaning comments :laugh: :laugh: :laugh:

Got my blood test today just by the treatment nurse as usual (who cant request any other tests except TSH and T4) but she actually wrote on my bloodbag "please test T3" ha ha. Good sport she was. Of course I know they ignore it but you never know.

Im going to post my results up when I get them, I think I need my meds upped (and some T3 into the mix, but this is the UK so low chances of that happening). Ive got a feeling they will either keep me on my current dose of Levo 175mg or up it to 200mg. The doctor said previously they dont like giving people over 150mg! lol