Hi there, i've been treated for autoimmune hypothyroidism for about a year now, after an initial low dosage i'm now up to 100miocrograms of levothyroxine (for about 2 months). The problem is I still feel rotten, even though the past 2 tests confirmed i'm within normal ranges for T4. I'm still getting random fainting fits and general feeling of tiredness all the time. Few other things too but i'll spare you the details.
Anyway just changed doctors and even managed to get my t3 level checked (which apparently their not supposed to check any more) because after reading around I wondered if t4 and t3 treatment would suit me better.
Although my t3 level too was within normal range, I tried sounding the Doctor out about t3 treatment but she flat out refused to prescribe it.
Is it just a case of me being impatient, if t4 treatment is adequate how long does it take to feel alright again?
I'm male, about 6ft 2 and 14 stone and reasonably fit (I work out when i'm not totally knackered) and I don't smoke (don't drink much either) so I shouldn't be feeling so bad. I'm beginning to wonder if the Doctor thinks i'm a hypochondriac (or mad), as this is the third bout of blood tests within a month and everything seems ok.
There still seem to be a bit of an argument within endocrinologists at the mo about the benefit of t3 treatment but it seems most don't think it works (and my Doctors is in that camp), so id like to hear back from someone in the other camp as my chances of trying it seem pretty remote.
Thanks
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JimbobBrown
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Your weight is around 90 kg. The full replacement dose is often calculated at between 1.6 and 2.2 mcg per kg. So if you need full replacement that would work out at somewhere between 145 and 200 mcg. (And that assumes pretty good absorption.) 100 mcg won't be enough.
A paper (available at link below) provides an argument as to why some people who start off on supplementation inexorably move towards requiring full replacement.
It can be a long, slow process returning to some semblance of normality. A rule of thumb (with no medical verification!) is that it takes as long to recover as it did to descend into illness. Even if the issues start to respond they can take much longer to fully recover.
Finally, being within normal range is not good enough.
Thanks man appreciate the quick reply. Was beginning to think I might just up the levo dose and conveniently forget to inform the Doctor. Brain fog being what it is and all. Looking back I reckon It took about 3 to 4 years for me to get hypo enough to see the Doctor, so i'm in for a bit of a wait then. Still its good to hear back from someone, Doctor makes me feel like a bit of a pillock with the continual moaning I do at her. Reading the link now.
Now that is interesting, even if it is mind over matter, if the results are an improvement in symptoms then its gotta be worth a try.
If you don't mind answering,are you 100% and energetic now?
Do you still get weak muscles and a slight hot flushing type of feeling?
Or is it just alleviation of depressed like symptoms? I say depressed like, cause with me I can say i'm depressed I just don't care either way - and don't like company much anymore. Sorry to pick your brains its just the treatment i'm on has helped with some things but not others.
I'm not yet 100% energetic (I used to do bodybuilding and train 6 times a week - I now do 3 times a week with a personal trainer to push me). Since taking T3 my energy has increased somewhat and I feel like training rather than finding an excuse not to.
I still get hot flushes and do get quite hot... muscles cramp and ache a lot more. funnily enough some of that decreases when i train.
As for depression, my mood has elevated but have been on fluoxetine for 2 weeks... so cant be 100% sure if its the T3 or the "happy pills" (they say that it takes about 6 weeks for noticable effects of the fluoxetine, considering that I've been on T3 for 5-6 weeks i'm more inclined to think its that)
I would also find "good" reasons why not to meet up with people and needed all my will power to get up for work...
Brain fog, tiredness and weight gain have been my biggest hurdles and causes lots of frustration & heart ache!
Thanks for answering Tracy. Energy levels are the biggest kicker for me, I noticed there was something wrong when I couldn't keep up with the other people in the gym no matter how much food I stuffed into me or how hard I trained.
I'm not into bodybuilding, more the martial arts side of things (Krav maga). I'm not in that bad shape (didn't gain much weight) so I just couldn't understand where guys who didn't train much got all the energy from. I'd be watching my food and not drinking while the other lads would be surviving off pizza and beer and still running rings around me. Its was bloody irritating.
Yeah the brain fog is fun too, I have to concentrate really hard to work out what people are saying sometimes, although I'm getting very skilled at nodding and pretending I'd heard them. Do you find there's any pattern to your energy levels? With me sometimes I'm able to keep quite active and then a day or so later i'll nearly pass out walking up a flight of stairs.
Had a look at some more of the site and still can't get over how many people are not happy, even though their supposed to be treated adequately for this illness, some of the tales are heart wrenching. Makes me really believe the treatment or dosage regime is seriously in need of revision. I'm at Uni so I went digging around in the endocrinology journals and the impression I got was not enough research, or clinical trials have been done period. And this site, hearing what other people with this disease have been through, just confirms it.
And I thought it was just me that had lucked out with the doctor.
I find the mornings and late afternoons (3pm-ish) really hard to get going / moving / staying awake or if walking quickly my legs burn and I'm breathless (its crazy 'cause I don't believe I'm that unfit!!)
Also if I have a really busy week I tend to lock myself away for the weekend... So yes I can relate to your energy patterns.
Yes it is heartbreaking that sooo many people are suffering because a few doctors state what is normal!!
I once asked a doctor if she was happy for me to live a substandard life because they were only prepared to treat me based on the blood test and not treat me as a person or holistically - her answers was a resounding "Yes"!..
when were you first diagnosed? I've been hypo since i was 8/ 9 yrs old and diagnosed with hashimoto's 5 years ago..
Thats unbelievable that a Doctor would tell you that.
It seems some Doctors have problems with empathy (you would think that would be a requirement for the job).
I got the impression that my doctor would rather cover her ass than try me with a "not by the book" treatment. Thought I was just being mean but perhaps not.
I don't really know what the exact disease is, I presume its Hashimoto's cause I was told it was probably autoimmune, although nobodies told me the name, I had to look that up (seems they don't know the causes either). I had high TSH and antibodies, I know they tested me for adrenal failure too but that was fine. I have a family history. Both my parents have it, an aunt, a grandmother and a step mother
It came on around 25 or 26 I reckon, at first it was a bit like bi-polar, i'd be an irritating git for a day then really sluggish for a couple after. By about 28-29 I just turned into a slug, it got so bad I had to see the doctor (even though I really don't like em). I'm 30 now and been treated at various doses for a year, hell I'm certainly better I can function again but I'm still not right. I used to be jolly and bouncy, now i'm more like a robot.
For a disease that is this common you'd think there would be more information available on it. It's like a nasty can of worms that just gets bigger and more wriggly, the more I talk too the more common I find it is.
The Endo I spoke to didn't really want to talk about it and the Doctors I spoke to didn't seem to be confident enough to give me a straight answer either.
If you were Hypo all your life but only diagnosed Hashimoto's recently did you develop the disease or was it just not diagnosed?
I think I was hypo and then it developed in Hashimoto's... been on thyroxine for soo long that my body has gotten used to it I guess.
I also have family with hypo.
Its very frustrating when doctors brush you off as if you're making things up. If you do find a doctor who is willing to listen and try new things, then its a god send! Thankfully I have found such a doctor. Fingers crossed it stays that way.
I also used to be jolly... thought i was getting old and cynical at 34 yrs old hahaha
Reading through your posts I was going to suggest you checking your adrenals, then when I just read this last post about you having been checked for adrenal failure ( addisons), it convinced me....
Doctors only test for adrenal failure or too much adrenal function. No grey areas in between.. You should get a saliva adrenal test from Genova diagnostics. (£75) to find out where your cortisol is throughout the day. If it is lower than normal at any point you will feel tired. Of course you can ignore it until you develop addisons, or you can treat it. I've had hashimotos for over 20 years and fixing my adrenals over the past year has been the biggest improvement of all.
Your impression that the doc would rather cover themselves than treat the patient, is sadly correct. They run the risk of being hauled up before the board for treating properly. It's a sad and sorry state of affairs, but there are several campaigning thyroid groups trying to do something about it, have a look at Thyroid Patient Advocacy and Stop the Thyroid Madness.
Yeah as I've read on a few other posts it seems when your not fit to fight your corner you have to, cause the Doctors thinks your lying to them. Lucky you on that front, I just moved over from Ireland but my new Doctor seems no better than the old one.
You need to guard that one with your life.
34 is not old, I keep having to remind myself of that too. 30's are your prime, my dad's in his 60's being treated for thyroid (well by all accounts on just T4) he's cheerful and bouncing around like a mad man (totally wears me out) alright he may not be as fit or strong as he used to be but he's not a limp lettuce like me.
The guy who teaches me Krav Maga is in his eary 40's and the fittest guy I know (meanest too). Stamina and strength wise he would destroy most of the younger guy's who go along. Its not normal to feel crap all the time at 30 and I won't have it when somebody tells me it's too be expected. Now all I have to do is convince the Doctor I'm not just depressed, or stressed. Stressed would be great come to think of it.
Think I'm gonna have to start taking less crap and start telling em to sort me out. Did you have a barny with the Doctor and then change? I think after the next bloods come in with nothing "wrong" I'm gonna see another one an hassle them for the stuff your on.
Thanks Nel it might well be worth me trying that, i've now got a load more research to do before hand then. Well i've certainly learned a good bit about the human body since I got diagnosed with this.
Figured as much from the defensive tone the Doctor took straight away, I suppose when you think about it the goal posts aren't quite the same for the Doctor.
I did once tell a doctor he wasn'y qualified to re-adjust my medication and that I would rather he continue with the advice from my endo at the time. (I went to a private endo in Harley Street at the time). He never adjusted my meds again!
I then moved to a new area and went to a doctors surgery (they were rubbish right from the reception staff to the doctors!) I left there quickly and am now at another one and after seeing 3 other doctors here I have found a lady doctor who is willing to learn and try new things... she sent me to an endo when she felt she wasn't sure and thank goodness it was a good one. Last thing she said to me was that she felt like we were working through this together!
Its amazing how you feel when a doctor is willing to just listen and try understand how you feel... I think that is 50% of the battle.
Take some of the research that T3 actually helps with depression... here's a link i just googled...
I understand your point about not being suppose to feel this way at such an age.
At university I went through all the doctors at my GP before I found one I liked (not that any real investigation was made into a possible thyroid disorder, but at least she was a pleasant human being). I had one condescending Dr before tell me that medicine tries to deal with the serious illnesses and apart from that we should just do the best we can (trust me, she said it in a condescending way). I think if this were the olden days we would be dead, our advanced society is keeping us alive albeit as we are.
It is sadly clear that unless you have a tonne of money to see many private clinicians, you have to fight for yourself and investigate yourself:
After having my first round of thyroid function tests (just TSH and T4) with my current doctor, I asked "what about T3?", to which he responded that it was only necessary for people currently being treated in order to regulate their medication and would not be of any use in my case.
Fast forward to not long ago. I get a copy of those test results and see a low TSH of 0.4 (good on first glance) and quite a low T4 of 11.4 (not so good perhaps). I go in and point out the low T4 level along with the low TSH level and ask about secondary and tertiary hypothyroidism (collectively called "central hypothyroidism" as I've learned since) in light of the clinical symptoms. I get a T3 test.
I actually went in for an endocrinology referral originally, but since making the appointment I was disheartened and didn't pursue it. I've been thinking about self-treatment and then going over to the NHS.
Self-treatment should be a last resort, but screw it - I doubt a little Armour or Levothyroxine is going to kill me... and if it does, at least I tried
What you doctor failed to also mention is the fact our "modern" society is full of all sorts of things we weren't built to deal with, i.e. high levels of ambient radiation. I've heard grumblings about a possible link between Autoimmune hypothyroidism and radiation (could be viral, could be genetic disposition no one seems to know or care much). And we all know the treatment for Hyperthyroidism is to irradiate the thyroid gland to kill it, so there could be something in that.
Self treatment may well be the answer, just take it slow dosage wise as going over (hyperthyroid) is not at all pleasant. From the info I've got it seems Armour is very expensive in this country (which may explain the reluctance to prescribe it) so try Levothyroxine first maybe. I'm also fed up of being fobbed off - are you sleeping enough? - are you stressed? - are you eating ok? as if you don't know the symptoms of your own pet disease. I would see the Endocrinologist though as you never know, you get a nice one. Mine wasn't but I've heard stories that they exist.
Either ways I'm uping my dosage of levothyroxine slowly and may or may not inform the Doctor. Helvella gives a good link to a Bio feed back article that may be relevant to your situation (hoping it is mine too or I will have to hunt out a Doctor that prescribes Armour - not easy). So I've started experimenting to see if a higher dosage will relieve the more insidious symptoms that the Doctor doesn't quite believe I have.
Thanks for the link Tracy.
Hunted out the article about treatment of T3 in depression (I can email the article if your interested - got access via Uni network so don't think a link would work for U guys) it seems T3 is just as effective as Lithium for treating depressed patients. And depressed patients tend to have low levels of freeT4 free T3 in the bloodstream. Which may explain why most of us are a bunch of sad sacks. I would suggest Doctors (most of em) only treat to whats called borderline Euthyroid to stop us from keeling over dead. I guess this is not anywhere near enough for some of us to produce enough free T3 for our brain to get hold of and make us feel better.
Been on a higher dose for two days I'll let people know it seems to work.
Still amazed about peoples horror stories with Doctors...still its good to hear from other people in the same boat.
Please take care with the fluoxetine (Prozac) as it can also have a bad effect on some people.
When a consultant prescribed it for me (16 years ago), my GP said why have you been prescribed this and I said 'I do not have a clue'. It turned out it was for pain relief.
After six weeks I had very bad experiences and the doctors told it was nothing to do with the medicine. I was bed-ridden. I stopped it hoping it would go out of my system in six weeks but these new symptoms continued. My daughter sent me info from America and it said either a steroid or anti-histamine may help. I had never in my life had an anti-histamine but I took two and 1 1/2 hours later, my God I was then on the road to recover my health.
PS. Whilst I was ill my husband asked the pharmacist if anyone else had mentioned a reaction. He said no, but two days later he said a truck driver had told him he had a dreadful experience whilst he was driving.
I am recently diagnosed with auto immune hypothyroidism , i was very sluggish and sleeping allot and when i had my dosage raised eventually it made me far sicker. I actually collapsed and had hives which really scared me . I took myself off the t4 and managed to get to see an endocrinologist after a months wait , who told me it was perfectly normal for women of my age to faint. Luckily i had done some research and went prepared and well armed with only the intention ot get his signature on the dotted line to get hold of t3 , it was a good battle of intimidation for about 10 minutes but i had had a month in bed asleep to fuel my determination. I feel like a different person in the t3,My stamina is still a bit rubbish but i am hoping that will build in time.
i am on 40 mcg , 20 mcg twice a day now i got them to raise it to that after my inital dose. My t4 level is 2.5 !! and my tsh is 0.09 but my doctor says so long as i feel ok that's all that matters and to come back in a years time. I have only been on this medication for 2 months and my levels sound very scary which is why i have joined this website to see if you actually need t4 for any other reason than to convert into t3 which my body obviously plainly wasn't doing. If you want to try for the t3 my advice is to start talking about conversion of the t4 into t3 and mention adrenal glands it sent my endocrinologist into a tailspin and he was actually physically standing in the corner as far from me as he could get ! Be patient be prepared and do not expect any kind of empathy or interest but do do your research good luck !
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its good for you hahaha
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