To anyone who's noticed how quiet I've been on here since moving house, okay, I'll come clean, it's because I've not been brilliantly well.
This post will only make sense if you know what TSH, T4( FT4) and T3 (FT3) are. So if you don't but are curious, all that is explained here.
I had my thyroxine dose reduced in September, by a tiny amount, didn't notice much difference, then moved house, started to feel a bit rough, put it down to the move, had my thyroxine reduced again and slowly started to sink into a bit of a muddle of unwell-ness, hello again bad hypothyroid symptoms.
Why was it reduced? Well, since I started taking T3 (liothyronine) alongside thyroxine my TSH reading has been around 0.03 which is very low. My doctors in London seemed pretty relaxed about this but I'm aware that there are long term risks to my bones and heart of having a suppressed TSH, especially after Professor Graham Williams' talk to the BTF London Group last October so I was slightly uncomfortable about it. And although I felt better than I had before starting to take the T3 meds, I still didn't feel 100% well so was hoping that some sort of a tweak might make a positive difference.
So it turned out that reducing the thyroxine did not make me feel better, it made me feel worse. In fact, I ended up feeling quite lost in space. Brain fog descended, I seemed to be in a muddle a lot of the time, constantly tired and short of time, occassionaly a bit tearful and low in mood, which is not the normal me.
Reporting all of this to my new endocrinologist and looking at my blood test results when I first saw him, which showed my FT4 had become very low in the range, he promptly put me back on my original dose and also suggested reducing the T3 medicine instead - but I protested!!
"No please!", in fact I cried a little bit, I was very, very scared that if my T3 was reduced my cognitive function would go completely down the tubes again, because before I took T3 I simply couldn't think straight, I was really in a mess back then. I didn't want to end up like that again, it's too scary to contemplate. Seeing my distress the doctor agreed just to change one thing at a time and we just upped the thyroxine.
That was back in February. Last week was time for another check up. My TSH is still too low. I still don't feel properly well. I've been ruminating on the stuff I learned at Graham Williams' talk (I am overdue to write more about this event and I will soon, promise) I really don't want my bones to crumble away or to have a heart attack so I was kind of open to the possiblity of reducing the T3, but also still very anxious about the idea.
Clever doctor pointed out to me that when I felt like a cabbage I had an undiagnosed vitamin D deficiency. This has since been picked up on and addressed. My vitamin D is now replete (nice word :) ) When I started taking Vitamin D supplements I noticed a profound improvement in my wellbeing and particularly my mental function. Perhaps that was the problem all along and it may be that T3 medicine is not actually required after all.....
Hmmmm, well perhaps, but I am scared, I am really scared. I am scared of being taken off this medicine that I believe is helping me and I am scared that if I stop taking it but then want to go back on it I won't be allowed to.
So I tell him my fears and he listens and he says, "T3 medicine seems to help some people but we don't really like giving it because it's not physiologically right - your body should be converting the right amount of T3 from the thyroxine you are taking - and because of the problems it can cause, particularly as your TSH is so low. Let's try reducing it, if that goes okay let's try stopping it altogether, let's take things slowly and if you feel unwell again you can go back on it."
Which I thought seemed very fair. So I agreed. He also told me to increase my thyroxine a little, to make up the difference.....
It's now day 5 of no T3 medicine. Guess what, I feel pretty good, possibly better than before in fact....... hmmmm, watch this space.
I'd love to hear from other people who have or are taking T3. It's great to be able to compare notes. Comments on here are always welcome.
Learning all the time. Ever hopeful. Sending smiles.
x
Hi Lorraine, I haven’t posted in a while, but continue to read your blog with interest. Sorry to hear you’ve not been great. I’m in a similar situation, still trying to optimise my thyroxine (was diagnosed 2010). When they said it will take a while to get the dosage right, I didn’t realise they meant this long! My health has been up and down over the last two years and I’ve not been able to return to work, but lately I’ve been “better”. The recent sunny weather helped and I spent as much time as possible outside topping up my Vit D. My latest blood test showed my TSH was 0.04 and the doctor wanted to reduce my levothyroxine, cue me panicking! As I’ve been feeling better I was very reluctant to start changing things, so he agreed to test again in a few months. But if the TSH is continuing to fall, he’ll want to reduce the dose. We are moving house in the next few weeks, so I’m praying any tweaks to my levothyroxine don’t make me unwell again. I’ve not been prescribed T3, but I do believe that my symptoms have improved a bit and stabilised since taking the Vit D supplements. I’m glad you are feeling okay since stopping your T3, maybe the Vit D is the magic ingredient after all. Fingers crossed.
ReplyDeleteHi Claire, I'm so sorry not to have responded to your lovely comment before now. I am starting to wonder if the reduction in T3 may be making me more foggy brained, but who knows, there are so many other possible factors. I'm about to do another post on the T3 situation. I hope your house move went well and that you are feeling good at the moment. Do keep in touch, it's great to exchange notes. sending warmest wishes and much respect to you.
DeleteI take T3 alone. All of the negative things that happened to ya'll on T3 has had the exact opposite on me. I feel awesome and I've been in dark place a long time. The endo's here decided my levels weren't far enough off to matter and that left me out in the cold
DeleteHOwever, due to the darkness, I go to a psychiatrist who put me on T3. I have't felt this well in 30 years. I"m back. I"m me again. The fog is gone, I have the energy I once had, I have a smile. I hope y'all get things squared around and are happy and well.
PS, every woman on my Mothers side of the family were hypothyroid. My aunt had a goiter so big it looked like and innertube. She ended up dying. Thyroid cancer.BUT the doctors said it was too bad because they were right because her levels said so.
My sister, her levels, just fine. Hashimotos and ended up losing one side. Her levels were just fine still and she nearly didn't get anything even though the hypothyroid had caused Hasimotos and tumors in her throat.
We die off like flies around here. I'm so thankful for my Psychiatrist who dared to step outside the box, listened to me and probably has saved my life.
I am on disability over Bipolar, severe, rapid cycling. Absolutely I continued to try to kill myself as sneaky as possible. I nearly got it done several times but I guess my spirit just wasn't ready to lay down. I was that miserable.
I'm going back to work. I had/have a Masters Degree. Time to go back to using it.
Oh Lorraine I did read this post a while ago... brain fog/memory lapses are NO excuse.
ReplyDeleteYour honesty is a breath of fresh air... or is it seaside air? ;-)... and I feel privileged to be following you on your journey to wellness.
If there is ever a silver lining to this hypo cloud it is the people I have encountered online... and you were one of the first.
My very best wishes to you Lorraine, always, Robert.
thank you Robert, sending salutations back. I wonder if my long delay in responding to this is indicative of the brain fog redescending since the T3 reduction.... am about to do another post on the subject. Anyway - waving and smiling to you, dear friend, we will get there!!
DeleteHi Lorraine, I'm on a combination of T4 and T3 now for about 5 months. I noticed the difference very quickly when I first started the T3, it has been much more effective than a small increase in T4 and it seems to be knocking all my symptoms on the head except the weight, but maybe given time losing some will get easier too. Within a couple of months of starting T3 I had my first menstrual cycle since my hypo diagnosis over 5 years ago. T3 is certainly necessary for me, I hope your symptoms will not reappear when you are reducing your dosage.
ReplyDeletePS my TSH is 0. this is the way it has to be to knock all my symptoms. My doctor advised that it is better to suppress my TSH and have periods than to go without periods indefinitely leading to premature ovarian failure and osteoporosis from lack of estrogen (I'm only in my early 20s).
ReplyDeleteHI! Sorry I have been slow to respond to everyone posting on this thread. Perhaps an indication that the T3 reduction is in fact making me more foggy brained. I'm about to post more on the subject.
Deletethank you so much for sharing your experience. It seems so many doctors have differing approaches to treating with T3. I hadn't heard of an estrogen link before. The more I find out the more I realise what a complicated machine my body is! As you are so young and hadn't been menstruating it sounds like your case is perhaps more complex than most. Thank goodness you have what sounds like a good doctor.
I'm so glad you are feeling better and menstruating now. Here's hoping that things will start to improve. Keep in touch, wishing you health and strength.
Hi Lorraine, thanks for replying and keeping us up to date with your progress. I regularly check in on your blog hoping you are doing well and proposing more helpful advice. I'm on a good multivitiman but will give Vit D supplements a try seperately on your recommendation.
DeleteFor chronic hypo female patients (like me) the T4 shortage leads to a shortage of progesterone and this stops the cycles as estrogen becomes dominant, without progesterone the womb atrpohies and if left untreated long enough, your ovaries can give up so you go through premature menopause and thereafter have very little oestagen to help your bones leading to osteo problems.
My doctor advised that any research into too much thyroxine leading to bone loss has to be weighed against the proven dangers of undertreating with thyroxine and continued amenorrhea as outlined above. In my case the T4/T3 combo is working for me, although if i had a blood test in the morning they would say i was hyper i'm sure!
I'm still not regular, in the 5 months I've only had 2 cycles but I'm hoping in time i'll improve. All other symptoms have gone, my weight is no longer increasing for no reason (on very strict diet and exercise regime), but I havent lost any weight either and I find fluid retention to be a real problem in hot weather (anything greater than 20celsius!) or if i eat any salt.
A note on blood tests: my doc said once you are on replacement the thyroid hormone level indicators are all skewed and can vary widely throughout the day, week, month (especially for women with menstrual cycles). We are all different in our symptoms and appropriate dosage thus, within reason, we should be medicated to a level that we no longer have any symptoms. In my case I'm hoping i'm at that dose now. finally. Doc advises 6 weeks between dose changes and then 6 months for the body to totally catch up and be normal again completely.
I'll let you know what the next 6 months brings! :) Fingers crossed :)
Hi, thanks so much for sharing all of that, the whole interaction with progesterone and estrogen is something I have not read up on at all so I'm not in any position to comment on any of that.
DeleteThough our speaker in November might have lots to say about it as he's focussing on thyroid and pregnancy, so I look forward to hopefully learning more. It sounds like your doctor is very clear about the right treatment for you. As you say, we are all different and need to be treated as individuals. I can relate to what he says about it taking 6 months for our bodies to catch up with changes to medication doses. I'm now a month into thyroxine only and still not sure how my body is responding but so far it seems fairly positive. I look forward to comparing notes with you again and to us both getting completely back to normal again soon - AMEN!! x
Hi Lorraine, I'm still struggling with the weight and am starting to think the T3 isnt that magical after all! It stabilised my weight for a while and I did feel better but gradually gained another 8kg so am not very happy! Maybe enough T4 would have brought the cycles back anyway.... so I have quit T3 with the past week and am hoping to go on armour next week when I see the endo. I think I gave the T4/T3 combo a fair trial so it was time for a new strategy. Fingers crossed for armour :) Hope you are getting on well with T4 only :)
DeleteHi again, so sorry to hear the T3/T4 combo didn't seem to pan out for you in the end. How long were you on it? I think what your doc was saying about it taking 6 months for our bodies to adjust to changes in meds rings very true. Certainly in my case I believe I've found that to be the case. I know that too many changes aren't good. I'm still doing good on T4 only and a gluten free/low carb diet. I've lost over 20 pounds since the start of May and I think I'm much clearer headed and energetic. It seems to have been a combination of factors that have made the difference for me and I do now feel that in my case the T3 treatment was a bit of a red herring. Like you I felt that it helped me initially but the benefits seemed to tail off.
DeleteHave you tried making any dietary changes? Coming of wheat and gluten has been a great move for me, I wish now I'd tried that sooner. Cellulite gone, allergy symptoms mostly gone, weight dropped off, cognitive function SO much better....I know it doesn't work for everyone but seems a worthwhile thing to try for those of us who seem to struggle to find a solution to hypo symptoms.
Keep me posted on your progress. Great to hear from you again. :)
Hello
DeleteToday is my first day on T3, my T3 and T4 levels are within range as per my blood test however I have all te symptoms of Menopause including brain fog, hot fashes, mood swings etc. I'm 34 this year , married and no kids. Like Anonymous my periods went away when I was around twenty, I have seen top gynea's and under went laproscopic surgery, bloods tests and scans all the doctors said the same thing for over ten years, its Menopause. Last year my father passed away and I had the opportunity to look after him before he passed. I learnt so much about my dads illness and decided that i could not accept Menopause and infertility at my age. I found a doctor that is trained in Western, Naturapath and chinese medicine and stared looking at my case anew. Within the first appointment I was diagnosed with a thyroid problem (I had to submit a full family medical history two days before the appointment) , its now three weeks later with my blood tests and wilson tempreture tests done. I have a 22 for vitamin D and a very stressful job. I will be taking vitamin substitutes and calcium tablets. I was told that gluten is also bad for my thyroid and have removed it from my diet after the first visit with my new Doctor. My main reason for not going on to the TSH is because it also has risks and the period cycle is a fake ie no ovulation.
Im hoping to correct my thyroid and bring the periods back with healthy eggs by next year. I have had 3 periods for about 13 years my bone density is within range (I am a big milk fan - even though it makes me gassy). I just want to say to anonymous you not alone and its scary to think about but do as much research as possible and keep a diary of your symptoms its very helpful if the doctor looks at things holisticly not just the blood results.
Good Luck to both of you
Kay (South Africa)
Hi Lorraine,
ReplyDeleteI had been on the T3/T4 since February and gradually increased the T3 under supervision from 5mcg to 80mcg per day (split doses). It did bring back my periods but was very expensive (over £200 per month) as I had no cover from the NHS and my insurer wont cover perscriptions.
I was worried that I'd get worse coming off T3 but it has made no difference (2 weeks have elapsed and I've had a period without it, but it might be early days yet), maybe it was the boost i needed at the time and now my periods are back I can do without it? its amazing how bodies adapt!
i have been 95% gluten free since i hit puberty and developed allergies and worsening hypothyroidism 10 years ago. I used to eat small amounts of gluten free healthy carbs (oat porridge or brown rice) and not gain weight but could never have any bread or pasta up to 2 years ago. But since the estrogen problems combined with severe undermedication of thyroxine led to the weight problems developing 2 years ago (i've gained over 4 stone since, having been 9 stone all my adult life until this, over 13 has really frightened me) i dont have any carbs at all unless as a treat and then it is only a taste.
Definitely wheat/gluten are a huge problem for hypo patients, low carb is the way to go to lose weight, i'm glad you are seeing progress :-)
Despite my current low/no carb diet the weight is a constant struggle. I think my BMR must be very low, my pulse is 60 per minute and temperature 35.5degrees (35 and under is hypothermic!!) i've met a personal trainer at the gym who's hoping to help me, he advised that i was doing more harm than good trying to run the fat off on the treadmill and that i should have a carb cheat day once a week and try not to freak out when my body gains up to 5 pounds as a result, he thinks if your hormones are balanced the weight jump up will go down over the week and help your body believe it's not starving. Unfortunately in my experience the jump up in weight from a serving of carbs can be anything up to 10pounds and i struggle unsuccessfully to shift them afterwards! Maybe his exercise strategy will help, by all appearance i'm still not on the right dose of medication, my doc said give it 4 weeks without the T3 and see how i feel before he'll think about perscribing armour.
I'll keep you posted.
Hi! That sounds like a lot of T3. I never got above 20mcg (with 125mcg of thyroxine). Luckily mine was all NHS treatment so didn't cost me anything. I thought anything your doc prescribes for you you should be able to get on NHS if you live here?
DeleteI can so relate to the fears about coming off T3, great news that it seems to have been fine for both of us. It's early days for you I know but I've had none now since July and was even able to reduce my thyroxine dose in September, I seem so much better since going gluten free!
Like you I wondered if perhaps the T3 gave me a boost when I needed it and somehow my body has then reset itself. I believe that on balance research into T3 has tended to show that it has a short term benefit for patients who take it. (don't ask me for sources, I'm not that sufficiently gen-ed up but this is what I've been told)
I've just written a post about my experiences with changing my diet, which has been truly life changing for me. Who knew gluten and carbs could have such an impact. So sorry to hear that you are still having weight issues even though you're being so disciplined.
I think it's worth any hypo patient who's not responding to standard treatment trying a gluten free diet but I also know it doesn't work for everyone and we need to remember that when sharing our own experiences. It definitely seems to help a good number of us. Food intolerances are bizarre.
I know nothing about BMR, temperature, pulse or estrogen issues. Wish I did. I'm not surprised the weight gain has alarmed you, it must be very stressful. I went from 9.5 stone to 12 and that freaked me out enough. I'm now back to just over ten and look well on that, I'm quite tall. As I'm 45 now I'm not sure if that's now normal weight for me or if I have a bit more to lose, everyone tells me I now look slim again. Hurrah. I feel like for me I've found the key..... contd....
.....contd.....I'd be inclined to wait more than 4 weeks before considering Armour if I was you. If you feel okay on T4 only, after giving your body such a lot to deal with taking high amounts of T3 over a relatively short amount of time, remember that lots of changes can cause symptoms and even long term problems because our bodies are struggling to keep up.
DeleteIn my case changes have been very slow and subtle. While my blood tests show shifts within 6 weeks of a change in dose, it typically takes about 3 months before I can really tell for sure if there's an overall difference in how I feel. (In September last year my thyroxine was reduced, I didn't immediately notice a difference but by Jan/Feb I was starting to feel decidedly cabbagey - it really took that long for it to be obvious).
Also - I know plenty of people who have taken Armour and not got on well with it at all.
One thing I noticed with T3 was that the condition of my hair improved massively when I started taking it. After I'd been on it a year or so my hair was so thick it was almost a bit weird. it felt almost like nylon thread! A couple of months after I stopped taking it my hair started to moult. It's still thick and healthy looking though I was starting to get concerned, I felt I was losing so much and I asked my hairdresser if she thought it was getting too thin. She reassured me that it's still in good nick. I read up on hair loss and apparently it's cyclical and can be linked to stress, physical as well as mental. I have a theory that coming off the T3 was a bit of a shock to my system and that the hair which was getting unnaturally thick has responded by thinning out a lot. I'm telling you this as an example of how slow and subtle changes to our bodies can be when we change hormone medicines.
I am personally really wary of Armour, I think a lot of people who push it do so because they have something to gain (I get so much automated spam about it on this blog, from a company which sells the stuff, which I have to delete). At the end of the day it's an animal product which contains T3 and T4 hormones in a ratio which is not natural for human beings. I know some people feel good on it so it's a rational treatment for them, where all else has failed, but plenty don't have good experiences with it at all.
I hope you and your doctor will work out the key and get your weight back on track soon. My heart goes out to you having such a difficult time. Have you been investigated for other possible causes of the weight gain and hormonal imbalances? Or are you taking any other hormone medicine?
Sending you warm wishes and all the good luck in the world.
x
Hi Lorraine, me again! thanks for your lengthy reply. I didnt get back sooner as i was waiting for some good news :-) I dropped the T3 end of last year and was on T4 only thinking of going on armour but decided against. The only other meds i was on were low dose antibotics for acne that became a problem when my periods restarted after being absent for so long, i'd say my hormonal system in general is fairly messed up! The antibiotic helped my skin, i still have spots but there are not as many and the few i have arent so cystic and angry looking so i wont get scars from them anymore. Downside was my liver function went to pot. My GP was very casual about it but my consultant was very concerned so i dropped the antibiotic in December and its only now my liver bloods are coming back normal again. The body is amazing how it can recover.
DeleteThe other good news is that i got a "second" opinion (more like 20th!) from an endo in the US, I didnt visit but had a few phone consults and gave him all my results back the years. He advised that the reason the high T3 didnt have much effect was the T4 was blocking it. So he advised I go completely off the T4 and go T3 only 40mcg / day split doses, which I did start of this year, 4 months on I'm now on adrenal support supplements too and progenelone. The adrenal supplements really helped my energy levels (i noticed the difference within a week) and i also gave up the gluten completely for the new year, no carbs at all and i feel fine. Still not losing weight but i think the period irregularity isnt helping that issue. But now that my adrenal supplements are helping cortisol etc. i can go back to interval training so am hopeful i might drop some pounds that way. i havent noticed any benefit from the progenelone, but since i've only added it in the past week its probably early days yet. If i could follow your path to success with the weight loss i'd be delighted. Well done to you! :-) T3 only for the forseeable future, my GP wont prescribe it as she says its a placebo (only becasue it costs more i think) and not needed despite how i feel and what private endos have advised, i've been referred to an endo through the NHS so maybe they'll be able to talk the GP around. Blood tests wise my T4 is low, T3 mid normal and TSH within normal limits so seems to be working out ok. I'll keep you posted! Thank you.
hiya, crikey, a lot of changes. that in itself can leave your system struggling. I don't know anything about progenalone or adrenal supplements. I know that a small number of people do seem to feel better on T3. It's a big step to take though, I guess if you feel you've exhausted all other avenues. Good luck with the new endo. It is a controversial area so different docs can have different opinions and that can make it extra hard for us as patients, but that's the reality. Personally I'm glad not to be taking T3 at all anymore for all the reasons stated above. Do keep me posted. Good luck with all!!! I hope you can find some stability soon. I know it can take me several months to feel the full effects of med changes.
DeleteHi, just found your site and am not sure if you will see this as you post was so long ago. But it was a helpful read-thank you. I have had hashimoto's 15 years, and have been on a combination of T4 and cytomel (t3) for the last 12 years.My problem is that even on a small dose of t3 (I take 5 mcg), and now up to 175 mg T4 (very high for me as I weigh 105 lbs), my TSH is .02 and my Ft4 is still the very bottom of the range. I wondered if your Ft4 fell because of the t3? I've read that some, but it confuses me
ReplyDeleteHi, thanks for posting, I think my T4 reading did drop on the T3 and I think it also suppressed the T3. Are you seeing an endocrinologist? You don't say how you are feeling with those blood test results, the bottom line is your doc should be treating you on a combination of what the blood tests say and how you feel. I'm entirely off T3 now as you'll know if you've read any of the later posts on this blog. With hindsight I wish I'd never bothered with it.
Deletehello My name is Margaret Iam new to here.I need help .I have been Hypo and on thyroxine 75mcg .I have been medicated for about 5 years.
DeleteI dont know what my readings are My Gp skirts over the issue if I ask.
I Feel very depressed at the moment as I feel as though I have got mental problems .It has been getting worse .I cant remember names numbers .I have tunes going around in my brain when I wake up my mind does nt seem to be still .My Drs are not the type that would listen They want You in and out and getting the next person in the door.Last time i mentiond this which was before i was diagnosed They sent me for counciling. I feel desparate for some help.Margaret.
Hi Margaret insist your Dr listens to you
DeleteHi Margaret, I'm so sorry to hear you are feeling so awful. You might find it helpful to take someone with you to your next appointment to ensure the doctor doesn't just rush you in and out. Explain you feel unwell, that you know mental health symptoms can be linked to thyroid function and that you need their help beyond simply counselling support.
DeleteExplain that you know that if you feel unwell although the thyroid blood tests may show "normal" results the British Thyroid Association statement on hypothyroidism states that you should be referred to a specialist. You can take this statement in to the appointment with you, there's a link on the Further Reading page of this blog. You can also take the British Thyroid Foundation quick guide to thyroid disorders and mental health if you think your doctor may not appreciate the link between your psychological symptoms and your thyroid, you can download the guide from the BTF site.
Also explain that you understand that the GP may be able to adjust your dose before sending you to a specialist and you would like to understand if this is a possibility. Insist they tell you your blood test results and the normal range that they relate to. They are your test results, you have a right to know them and to have them explained. If your TSH reading is above 2 I would expect that most GPs and endocrinologists would probably be comfortable slightly increasing your dose. If your GP is not open to this idea they are perhaps not as up to speed with current thinking on treating thyroid disease as you need them to be. Explain that you are very unwell and will not accept a poor standard of care. if your GP will not listen to you or help you please complain about them, if you can possibly summon the energy to do so (you can talk to the practice manager, contact your local Healthwatch, or go on to Patient Opinion or NHS Choices or the local Clinical Commissioning Group) and frankly I would encourage you to look around for a new GP as your health is too important not to be addressed.
wishing you all the good luck in the world. I am sure you will get there. Sadly some doctors are not brilliant all of the time, but most are and you do not need to stick with one who isn't. Stay calm and be clear and if you can't help getting emotional do consider taking a friend who can help you state your case.
Hi...I am new to this discussion and I could really use some advice! I was diagnosed hypo about 2 years ago. I started on T4 only but even though my doctor said my labwork was "normal"...I didn't feel right. In short, I begged my Dr. to give me some T3, which he did. I immediately felt better than I'd ever felt in my life! When it was time for labwork, my results read as follows: T3: 6.1; T4 .9; TSH .07. Come to find out, the nurse typed my script wrong and I was actually taking the wrong amounts of T3/T4. But...I felt wonderful so I begged him not to change my meds. He said we would switch it and if I started to feel worse...he would switch it back. 6 weeks passed and I slowly sank into a deep depression, cognitive malfunction, consipation...only to name a few nasty symptoms. So labwork was drawn again...5; .8; .01 respectively. Although I was severely depressed and unable to think clearly, my Dr would not up my T3. Instead, he doubled my T4. I continue to feel lousy a week later...will I ever feel better again? And I'm also wondering why my TSH dropped along with my T3/T4 levels? I was under the impression that as your T3/T4 drop...up goes your TSH! I just want to feel good again...as does my husband! Please help!
DeleteJulie
Hi Julie, thanks so much for visiting the blog and I'm so sorry to hear about your bad experience with being given the wrong prescription and the doctor not sticking to his agreement with you. it really makes me sad to read that.
DeleteI'm not a doctor (as you know) and I can't give medical advice, but I have some thoughts about your situation.
1/ I hope you will consider complaining about the treatment you've had, it's not good enough for them to muck up your prescription and not to honour an agreement about your treatment.
2/ I felt better when I initially started taking T3 too but it was a short lived improvement. I honestly think taking t4 meds only is more likely to work long term for most people. Some of the T3 you take as medicine may not be used by the body as it needs to be able to naturally convert T3 from T4 for use in most organs so your blood test results have perhaps become a bit skewed because taking t3 can confuse the TSH reading and it can take quite a while for things to settle down after a medication dose change. That's just a guess though. It's all very complicated and even the doctors don't know it all. Sometimes treating hypothyroid patients can be down to a degree of trial and error as what works for one person may not work for another. T3 treatment seems to help a minority but I really would encourage you to try all other options before going down that route because it's so unnatural for your body to be taking T3 orally when the balance of that hormone in your body should be regulated by your body's own mechanisms and it's a very delicate thing. Imbalances can lead to heart and bone issues down the line. I'm sure you will feel better again but it might take quite a bit of time. Few changes (chopping and changing doses can really destablise us), lots of patience, looking at things like possible nutrient deficiencies and / or food intolerances to see if they could be affecting cell function and/or thyroxine absorption would be the kinds of things I would be focusing on - and be nice to yourself. It can be a slow and frustrating journey but you will get there I'm sure. Keep in touch. Thanks for reading the blog. I hope it's helpful.
Lorraine x
Hi folks, I'm 51 and was diagnosed Hypo 6 months back but suffered for the past 3-4 years I suspect. Aches, tendonitis, planar faciatis in both feet, muscle stiffness, fatigue,fog, and depression. At times a real mess. The only sanity I had was I stubbornly remained physically active in sports which had its own challenges not the least was that my performance went down hill dramatically. I have been on Thyroxine for the past 5 months and went to my endrocrinologist a few weeks ago as I was having a bit of set back. I have a family history of hypo and a brother who is on high doses of T4 thyroxine through his GP's advise (hmmmmm). To get to the point my specialist suspected that I wasn't metabolizing the T4 in my cells to make T3 and prescribed gradual increasing doses of T3 (along with the thyroxine) to be monitored and assessed by myself through how I was feeling. It has made a 100% difference and I have never felt better. He's left me to my own accord for 12 weeks to follow up then with bloodwork and a revisit. So T3 is working wonders for me. I literally have no symptoms at the moment and feel like a million bucks. As far as the GPs I saw when I was feeling like hell, they all were pointing to anti inflamatories/ counciling or anti depressants for depression. According to their "paper and test result" I was fine. So my opinion of GPs is just that , they're generalists. I had to seek out the specialist. Mark
ReplyDeleteHi Mark, thanks so much for sharing your story. T3 definitely seems to help some people, you must be so happy to be feeling so much betterm now.
DeleteI felt a lot better when I started taking T3 too, but now it seems I don't need it any more and the Vitamin D and going gluten free seem to have resolved my absorption/metabolization issues. Who knows maybe I needed to take T3 for a while to kind of reset my system but I didn't need to take it long term.
The more I talk to different thyroid patients it seems the more I hear that different solutions work for different people. And yes, when the GP's generalist approach isn't working, we definitely need that specialist support! I'm so pleased your endocrinologist was able to help you feel better so quickly. :)))
Good to know about the t3 treatment as it is new to learn.
ReplyDeleteGet the DIO2 gene test done. Sounds like you might have a polymorphism in both genes meaning that you have great trouble converting T4 to T3 in your brain. This means that the rest of your body is converting okay but that your brain is not getting enough T3 (for example the amount of T3 in Armour will not be enough for your brain but if you up the Armour dose then your body might get too much). We have found that T3 only works well where there is a variation on both DIO2 genes.
ReplyDeletehi. I have been taking T4 for just over 2 years, starting from 50 going up to 150 recently. This hasn't ever helped me achieve peak wellness so after a lot of debate about the reference range of T3 (mine was 4, so borderline for most but middle for my health authority range) they started me on small 10 of T3 and reduced T4 to 100. First two weeks almost great but the last few days feel like I have returned to pre-medication symptoms of extreme tiredness etc. having bloods today and hoping it will show that reducing the T4 was a bad move, and that I need more T3. Anyone have any ideas whilst I wait for blood test and results?
ReplyDeleteI have had Hypothyroid problems for 9 years now. I have alopecia as well. I was initially on t4 and did have problems(skin issues like crawling all over). I stopped taking them for a year and the problems got worse. I went on Armour for several years and felt ok but massive anxiety issues(I have a high stress job and the things I used to laugh at would scare me). After major surgery, the anxiety was too much so I stopped. I went to a Holistic and they diagnosed me with Low T and low vitamin D. They also tested all food for allergies. I am now on an autoimmune diet.
ReplyDeleteI was put on Testosterone and Levo and did ok but still anxiety issues. When they added 10 MCG of T3 after several months, it was the best I had felt. It lasted about 6 months and I started getting bad headaches and fog. The diet started to kick in and my Endo dropped my meds from 100 MCG down to 75, T3 to 5 and testosterone in 1/2. Anxiety still kicks in on occasion.
Long story short, I believed my Holistic and took myself off of all medications. Had the best 3 months of my life. Sleeping great and anxiety was gone.
After time, massive issues as my TSH got up to 18.
I am now back on 50 mcg of t4 and although rough, not the anxiety as it used to be for about 6 weeks. Actually felt good but not great. Asked Endo for the t3 again and yikes. I have not slept in 2 weeks. Anxiety is rough. My T levels are on the low side but OK now? I talked with my Endo and I am now off the t3 again. That has been for a week but still having issue getting to sleep.
I know most of this stuff is my own self created issues and wish I had approached this differently. I did have my levels tested and TSH 4.8, Free T3 is 3.0, Free T4 is 1.88 so a bit high and TSH high.
Any idea how long it will take my body to settle down after there T3?
thanks
Hi there.
ReplyDeleteI have no thyroid gland....so...do you think a comco of t4/t3 is a must for me?
Thx
Sorry for the typo...should be **COMBO OF T4/T3...THX
DeleteHi Lorraine, I am so glad to have read this. I have Hashimoto - hypothyroiditis for years, but have not really been sufferring from it. However, I decided to try a different doctor and he precribed t3 in combination to t4 (I used to take only t4). This was 3 months ago. I have been tested recently and my tsh got really reduced (o.09) and the last day I have been feeling my heart race and a bit anxious, anxiety being hightened by the test result and fear. I am My doctor suggested I double the dose of t3 but that does not seem right to me. I am struggling to understand what to do, and I find it difficult to trust my intuitation, and am overwhelemed with info.
ReplyDeletehi anon! I'm so sorry to have just picked up your post. I hope things are better for you by now? I would strongly suggest you go back to your doctor and if I was you I would also seek a second opinion on the advice regarding T3 as it is a controversial treatment and different medical professionals will take different views on how or if to use it. Personally if I was experiencing racing heart and anxiety I would not want to take more thyroid hormones as both of those symptoms sound like potential signs that Iyou may already be on too high a dose. You can also take medical queries to the British Thyroid Foundation. I hope you will update me and forgive me for not picking up sooner. best wishes
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Hi I have had many trys at taking t3 . It doesnt give me a racing heart but it does give me chest pains . I stopped a week ago and Im still getting the odd chest pain. What I was wondering how long does it take to get it out of your stystem
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