Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi all, I'm a newbie to the forum and to be honest after stumbling across you guys I've got to say your insights are the only thing that are keeping me positive that perhaps my body is actually doing what it's supposed to be doing as I go through titration for this god awful disease.
It would be an amazing help to get your feedback and advice as I struggle through this process as as you will know it's just as much a mental struggle as it is a physical one so thank you in advance for any support.
I'm based in the UK and as many have been seriously let down by the medical establishment - undiagnosed for years, lost everything - my husband, job, very nearly much my sanity through being fobbed off. Couldn't possibly have thyroid problems despite awful pain radiating from my thyroid in the years prior. Eventually I got myself to the delightful Dr Peatfield who made the link, for the first time got my T3 tested and lo and behold it was awfully low. However I have struggled since then to get to the right levels after being awfully undermedicated on Armour (completely the wrong ratio for me) and useless endos that don't have a clue, surprise. I would always see the benefit of the thyroid meds so it was clear that was my trouble but never realised the importance of optimizing both FT3 and FT4 - thanks to you for that :)
I've been working with the most thyroid savvy doc I'm likely to get this side of the pond who works from a private clinic in London. She deals with my dosages and my local GP then dispenses based on her recommendations. However they are both starting to get a bit jittery about further dosage increases as I'm getting over 60% of the range now. My GP I know finds it hard to ignore the TSH (as much as I tell her to) and my private specialist has declared that 'we are there' and 'any tiredness you still have (my main symptom) can't be to do with your thyroid'.......ut oh.
Hence I thought it was a good time to join this forum to harness opinions of people who I believe know their stuff. knowledge is power and all that. My private doc has said to wait 3 months come back and then what I tell her is gospel and she just doesn't want me going out of the top of the range so I think I've got some more mileage with her but it's so deflating to have to keep fighting all the time.
We've been titrating up for the last year, started on t4 only which got me lovely high T4 but T3 didn't budge so that revealed part of the problem. I'm now on 20 T3 and 125 T4 (have been for 8 weeks now) and I am a lot better than I was no doubt. I seem to have a great 2 weeks once my new t4 dose kicks in but then I fall back again. My body is such a confusing thing to be in at the moment, sometimes I feel so much better others like I did before I was on any meds. The inconsistency from day to day is astonishing.
From reading your posts CD and Mbutterfly I think my body is reacting normally to titration, I can see an improvement but there just simply not enough hormone to sustain my body all the time.
My latest labs are
FT3 5.8 (2.8-7.1)
FT4 19 (10-24)
Which I think equates to roughly 70% and 64% of their ranges respectively. My plan is to tough out the next couple of months (as I have no choice) and then if symptoms still persist ask for an increase of 12.5 T4.
I'm sure it'll be like the equivalent of asking for heroin.
Blimey that's quite a ramble, if anyone has made it this far I apologise in advance, as if we aren't exhausted enough :).
If anyone has any thoughts on where my labs stand etc I would be eternally appreciative of any help, I feel like I'm fighting a war that no one wants me to win nor anybody understands.
Thanks ladies and gents
It would be an amazing help to get your feedback and advice as I struggle through this process as as you will know it's just as much a mental struggle as it is a physical one so thank you in advance for any support.
I'm based in the UK and as many have been seriously let down by the medical establishment - undiagnosed for years, lost everything - my husband, job, very nearly much my sanity through being fobbed off. Couldn't possibly have thyroid problems despite awful pain radiating from my thyroid in the years prior. Eventually I got myself to the delightful Dr Peatfield who made the link, for the first time got my T3 tested and lo and behold it was awfully low. However I have struggled since then to get to the right levels after being awfully undermedicated on Armour (completely the wrong ratio for me) and useless endos that don't have a clue, surprise. I would always see the benefit of the thyroid meds so it was clear that was my trouble but never realised the importance of optimizing both FT3 and FT4 - thanks to you for that :)
I've been working with the most thyroid savvy doc I'm likely to get this side of the pond who works from a private clinic in London. She deals with my dosages and my local GP then dispenses based on her recommendations. However they are both starting to get a bit jittery about further dosage increases as I'm getting over 60% of the range now. My GP I know finds it hard to ignore the TSH (as much as I tell her to) and my private specialist has declared that 'we are there' and 'any tiredness you still have (my main symptom) can't be to do with your thyroid'.......ut oh.
Hence I thought it was a good time to join this forum to harness opinions of people who I believe know their stuff. knowledge is power and all that. My private doc has said to wait 3 months come back and then what I tell her is gospel and she just doesn't want me going out of the top of the range so I think I've got some more mileage with her but it's so deflating to have to keep fighting all the time.
We've been titrating up for the last year, started on t4 only which got me lovely high T4 but T3 didn't budge so that revealed part of the problem. I'm now on 20 T3 and 125 T4 (have been for 8 weeks now) and I am a lot better than I was no doubt. I seem to have a great 2 weeks once my new t4 dose kicks in but then I fall back again. My body is such a confusing thing to be in at the moment, sometimes I feel so much better others like I did before I was on any meds. The inconsistency from day to day is astonishing.
From reading your posts CD and Mbutterfly I think my body is reacting normally to titration, I can see an improvement but there just simply not enough hormone to sustain my body all the time.
My latest labs are
FT3 5.8 (2.8-7.1)
FT4 19 (10-24)
Which I think equates to roughly 70% and 64% of their ranges respectively. My plan is to tough out the next couple of months (as I have no choice) and then if symptoms still persist ask for an increase of 12.5 T4.
I'm sure it'll be like the equivalent of asking for heroin.
Blimey that's quite a ramble, if anyone has made it this far I apologise in advance, as if we aren't exhausted enough :).
If anyone has any thoughts on where my labs stand etc I would be eternally appreciative of any help, I feel like I'm fighting a war that no one wants me to win nor anybody understands.
Thanks ladies and gents
I'm glad that you've found out site and are continuing to get well!
You should be tested 6 weeks after you've been on a set dose of medication(a mistake I've made myself!).
How are your symptoms? I would keep a journal of symptoms and present them to your doctor when you ask for an increase.
I had the same experience with levels not maintaining. Very frustrating! I had symptoms and blamed it on other problems. I'm currently over range and still don't feel right(adrenal problems) so perhaps you could get a saliva test to see if your adrenals are functioning properly.
Best to you!
My adrenals went down pre treatment so I take HC throughout the day, this eliminated my adrenal symptoms so hopefully that base should be covered. I can feel the thyroid meds gets into my cells it just doesn't stay there at the mo.
Symptom journal shall commence!
Scrap that, too tired afterall ;)
They should be brown, I think. That teamed with the Aslan wire like dry hair and overall zombie aura (thanks again thyroid) is a winning look I feel. Errrr
Loving the English spelling by the way
Ok, welcome and now down to brass tacks Laus:
My compliments on your math skills by the way!
Here's your labs:
Free T4
Range: 10.000 -24.000
Result: 19.000
Percent of range: 64.29%
Where ya outta be: 20.50-24.00 -This is roughly 75-100% of range. Most people feel "well" when they're in the upper portion of the T4 range, so you're not quite there yet. And, T3 greatly depends on T4 as T3 is simply converted from T4. Sometimes (not always) when T4 is in the upper portion of the range, T3 will bump up a bit. Now, if it doesn't, then extra T3 is required, but one step at a time.
Free T3
Range: 2.800 -7.100
Result: 5.800
Percent of Range: 69.77%
Where ya outta be: 6.03-6.24 -This is roughly 75-80% of range MOST people feel well when they're in the upper section of this range as well. Everyone's different, but T3 around your levels would put me on the sofa for a good long time. Mine runs a tad high and I feel "well" at that level I say that to illustrate that we're all individuals. Which is why it's very important to keep a journal of symptoms, med dosages by date. Symptoms can lie, labs don't (excluding the TSH test of course). The journal helps put it all into perspective.
So, are you on synthroid and cytomel or something else?
"From reading your posts CD and Mbutterfly I think my body is reacting normally to titration, I can see an improvement but there just simply not enough hormone to sustain my body all the time. "
I completely understand, and it most likely is titration along with sub-par thyroid levels. Until you reach your optimal, I'm afraid the symptoms will persist. Some will come and go, and others (like fatigue) will stick around like an old house-guest. But, once you hit your optimal - it'll be SO worth it.
And, I absolutely know what you mean about asking for more thyroid meds being like trying to score heroine. Frankly, in the US - it's easier to get heroine by all accounts. Ridiculous! Just remember to press gently and keep up with your symptoms journal - sometimes that alone has gotten me the increases I needed. That, and some well smeared compliments. (ugh the thing we have to do to get proper treatment).
From what I understand, the UK is having a horrendous time with thyroid undertreatment and misdisagnosis (or missing the diagnosis completely I should say). They're fighting to "fix" that, but there's miles of red-tape and stubborn asshats (pardon my french) who are going on the offensive to stop that. Best advice: Don't launch into that during a doc visit. It makes them even more nervous. You sound quite savvy, so I'm sure you know how to handle it.
Of course, it's not much better here in the states, but it's getting better (I have to believe that).
So, first things first, if you want to optimize, I'd ask for that T4 increase, then ask for labs in six weeks (if you can get them - if not - we take what we can get, no?). From those labs, decide if you need another T4 increase. Once T4 is optimized, it might be time to move on to optimizing T3.
We have a saying here: Slow and steady wins the race in this process. And it does. Don't try to change too much at one time. It's self-defeating and counter-intuitive. But, I've done it...and I don't recommend it. :)
Welcome! And if you have any questions about what I've posted, feel free to post again!
I do know of one private physician in South Kensington whose name I will share with you if you message me.
Yeah MB, scoring thyroid meds is harder than scoring crack in 1980's Lower East Side. You can actually buy cocaine almost anywhere in Manhattan or London right now but no one has the initiative yet to push the very sought after hormones! However, if you travel to Central or South America, they are plentiful OTC and in very precise dosages.
I take levothyroxine and a generic liothyronine. Hoping that they will continue to prescribe - everytime they draw my prescription up on the screen I can see that a big 'cost warning' flag comes up. I'm surprise an alarm doesn't feed through to the rest of the surgery with me subsequently being escorted out to the carpark and bundled off to the local police station banged up for crimes against NHS budgets but alas I digress.
I shall continue as you suggest absolutely. Know what you mean re stroking their egos and making it sound like you know the docs know best when really you want to just slap them round the face with a wet fish but diplomatic and nice I shall be....they just better not mess :)
Thanks again for your fab advice