Hi,I don't really know where to start with this, I was diagnosed almost 4 years ago with an underactive thyroid by probably hashimotos and I just can't get my symptoms under control. Sometimes I think they are just getting worse. My NHS endo referral a couple of years ago was useless and my current private endo has struggled to give me any answers. I tried T4/T3 combination therapy and it yielded good results for 3 months and then completely fell of a cliff with symptoms. Today I have been really light headed, nauseous and tinnitus. Its ruined my life and our family life is miserable. I've self harmed, have constant depression and am feeling pretty suicidal now. I'm on 175mcg a day, gluten free and have cut diary. My diet is good, I supplement and get plenty of rest. I dont know what else to do. I really need some kind of hope. I've just lost my temper in front of my little boy and threw my phone against the wall as I've had days of feeling terrible. And it's My partners birthday which I've ruined. It's awful behaviour and I feel ashamed. But it'd so hard to cope atm. I would like to thing T4 therapy alone will work.
Some days I have good days, or maybe good weeks but they are rare.
I've had pretty much every underactive symptom going. And most have been present since day one and never gone away.
I have some questions. Will my symptoms improve as I go up in levo T4? Assuming my end goal (symptom free) is 250 daily and I'm currently at 175 a day...
When do I run out of options with T4 mono therapy?
Has anyone had suffered tinnitus and a fullness sensation in the ears? I'm certain it's connected to my hypothyroidism and is another symptom.
I dont have my results to hand. I just know I'm in range...
Just need some hope. If someone offered me a way out now with assisted suicide I would take it. No one deserves this pain. I've got a good job, a great home life and a beautiful family all ruined by the this horrid disease.
Thank you and sorry for the negative post. I hope everyone is doing better than me!
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joey82
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Firstly, it's OK not to be OK. Happens to the best of people although I know it wears super thin when it's a regular occurrence. I hope your partner is understanding and you're able to talk with them.
As you probably know, being within the normal range is not good enough for symptom relief. It sounds like you have low FT3 but NHS doesn;t test that. Have you tested privately lately? Sometimes seeing things in black and white is validation for what we are experiencing.
Have you tried any dietary changes other than gluten & dairy free? Eating whole foods as much as possible, non processed and cutting back on carbs can be helpful for digestion and also fatigue.
I have experienced tinnitus and ear fullness, especially early on in this disease. Have you had your key vitamins tested lately - ferritin, folate, B12 & D3. Low levels of these caused by poor absorption can play into hypo symptoms.
To give T4 monotherapy a good run you need to get your FT4 to the top of the range. Hopefully then if you are converting well + got vitamins OPTIMAL you should feel well.
Do you have the blood results from when you were on T4/T3?
I mostly eat whole foods, high in protein and nutritional value, I can't afford to eat organic though lol! I take B12, iron & vit D supps daily. I have not been tested recently for vitamins etc, mostly due to cost. My private endo is costing enough. I'd be surprised if I have a nutritional difficiency, I just feel so poorly.
My private endo doesn't really say to much, I find him frustrating to work with tbh. He showed me my results last time (4 weeks ago & 150 daily). He just said I'm in range. Tbh showing me the results wouldn't mean much to me as I won't be able to understand them. I've gone up to 175 t4 daily and I can't say I'm feeling any better than I was when I was on 150 a day.
I think my partner has reached her limit. This disease has certainly ruined my life and is having an awful affect on her. My last T3/T4 results are:
TSH 0.52 RANGE 0.270 - 4.2
FT3: 7.4 RANGE 3.1 - 6.8
FT4: 13.8 RANGE 12 - 22
TOTAL T4: 110 RANGE 59 - 154
I've left out my anti body results. This test is from thriva.
I felt really good when these where taken 31st May '22, but it all changed a few weeks later and I became massively symptomatic almost overnight.
I think when I go for my next appointment with my private endo I'll show him these results as a comparison to when I was feeling well.
He reluctant to put me back onto combination T3/T4 as he thinks the T3 was contributing to my tinnitus. My FT3 at the time was high in the range.
Joe is your Endo trying to keep your TSH in range? Is it an Endo from the T UK list?
Those T4/T3 results, the FT4 is quite low and could have been improved on. The FT3 it depends when you last took your T3. Was it the recommended 8-12hrs before the test or had you recently taken it? It is slightly high. Often people need both FT3 & FT4 to be at around 60%+ of their ranges.
Did you ever give Levo only a good try?
Tinnitus can be caused by many things. I still have it. 😐
I don't think he is. From what I remember the list didn't have anyone local to me so I contacted my local KIMS and I went from there. He is specialises in auto immune diseases so I'd like to think he knows what he is on about. We've spoken about NDT T3 etc options...
I don't know if he is trying to keep my TSH in range, like I said he is quite vague and I seem to guide it at times. he seems to be paying more attention in the last 7 months though as I have been heavily symptomatic.
I would have taken my T3 approx 12 hrs before the test along with my T4. I was taking it at night, 3 hrs + after dinner. Now I take T4 only in the morning 1 hr before breakfast & caffeine. I did change to T4 at night, T3 in morning but it didn't change a thing.
Been T4 only since early November. 125 daily... 150 daily... now 175 daily with minimal improvements.
Waiting for an NHS ENT referral for my tinnitus, been waiting months. Pretty sure its connected to my thyroid, when I have my good days its hardly noticeable.
Since going up to 175 daily four weeks ago my dry eyes, tinnitus, and morning groggyness have been slightly better. Having a light head (almost dizzy), nausea and feeling really tired (at times) have been terrible at times. Seem to always feel a bit better in the evening. Think the red itchy spots have improves as well.
Also been tested for adrenal glad cortisol twice. All good apparently.
TBH I never felt any much improvements until I was close to and on my final dose. Now you have come this far with Levo only you really need to give it a good go, otherwise you will never know if it suits you or not.
I just wonder why you ditched the T4/T3. I wouldn;t say it didn't suit you as symptoms came back, just you needed some fine tuning. Posting here can help with that kind of thing. Endo's pretty much clueless. It's an option you still have open to you though once you've exhausted Levo only, if that even happens.
When are you getting tests next? Can't be too long?
Homelife can really take a nose dive when you're hypo. Maybe make some time for the odd date night even if you don't feel up to it much. Try and explain when you're feeling particularly rough. Talking helps.
Thank you, Jaydee. That's what my partner reckons, I will only feel well when I'm on the correct dose. I want T4 only to work as it keeps life simple. I read peoples situations on NDT & T3 etc and it sounds complicated. Plus getting hold of NDT and prescribed T3...
I became heavily symptomatic on 100 T4 & 20 T3 daily, then went to 125/20 daily and my tinnitus started really bad, and I was still badly symptomatic. My endo took me of T3 and then went T4 only 150 a day. He said my tinnitus may be because I was taking too much T3 and it was right in the upper end of the range. But it didn't help. My tinnitus has been slightly better in the last 4 weeks, but its very up and down. For me there is a direct correlation between my symptoms and tinnitus though. On my good days I hardly notice it.
23rd Feb. Appointment 5th March.
I've behaved appallingly in front of my family. Throwing things in my temper, self harming in front of my young son, rowing with my partner, ignoring my son when he wants me to play and he's calling for me. I will never forgive myself for the way i've acted, but this is destroying my mental health, the last 7 months have been incredibly hard. It's pretty much destroyed who I ever was 4 years ago. Sorry, just has to get it of my chest, really don't have anyone to talk to.
Hopefully one day I will feel well again and can make it up to them.
My Dad was hypo. His rages at times were legendary but all my Mum and children wanted were for him to be well. He's no longer with us. I'm sure he was vitamin deficient, probably needed some T3, suffered from reactive depression and at times anxiety, but that's not what I remember about my Dad at all and neither will your children. Just talk to them about it when you're feeling slightly better and they will understand.
You've come part of the way to healing now, a way to go but you've learnt things already and made progress, that's not to be sniffed at and new bloods and Endo appointment not too far off. Try and keep thinking of the positives and do be kind to yourself.
My tinnitus is also dependent on hypo symptoms, not constant and not so noticeable if I'm doing a bit better.
joey82. I have done the same. Many of us admit to this behaviour. I have been married for fifty years (very happily) but I was positively encouraging my husband that we should give it all up. To outsiders, they have no idea what this illness can entail. “A bit tired. A bit of constipation. Dry skin, eyes etc”. No, we have symptoms which can go from annoying to downright serious. A whole bunch of odd symptoms that make us sound like hypochondriacs. Hang on in there. You sound like you have a supportive partner who understands you are ill. Create a tiny tiny space for her now, in amongst all this rubbish we have to put up with. It really helps. Best Wishes.
I don't think the 'raging' that comes with a high, non-converted T4 level is covered enough in the discussion around this. I completely recognise what you're talking about.
I have found that taking a small amount (2-5mcg) of T3 at that point (the raging, desperate state) will sometimes swing my system back into a physically and mentally balanced state. If it doesn't work within 30 mins, I take another very low dose. (I don't ever take T3 at night because it will have a wakeful effect for about 6 hours).
That raging state isn't really low hypo, because that's more of a wiped-out, no energy, flat sort of state, whereas if I'm experiencing the same raging state as you, it's more like a desperate need to break something/make something crack open - it's the T4 getting into the cells and not converting. I think the body is trying to use adrenaline and cortisol (which stream through the body when we're angry) to carry out the conversion. And since the big conversion factor for T4 > T3 IS cortisol - naturally high in most people, but not all - at 9am, T4 theoretically converts ok as long as you take it before 9am. At which point, the cortisol converts the T4, and by 11am some lovely T3 hits the system.
But if your cortisol is LOW at 9am (as mine is), you'll just get stuck with unconverted, crazy-making high T4 levels. If it's possible to take the T4 early in the morning (between 5 and 7am) and then go back to bed for half an hour at least, that helps. Meditating for half an hour is even better. Anything to lower the overall stress on the body while the pill undergoes conversion. If that fails, I microdose with T3 at 11am.
Sorry for rambling on. Hope there's something useful here.
joey..... take it from someone who's been in the same place as you are now and is 20 yrs older and who has just been having a chat with a 24 yr old 'kid' who is having partner trouble ... one day when you are 60 you will be sitting in a beer garden having a chat with that 'little boy' , and he will say
"stop beating yourself up about all that stuff when i was growing up , it wasn't your fault you got ill , you're my dad and i love you and i know you love me, even though you were out of order or useless sometimes .... and i still need you here now ,even if you are still a bit rubbish and i am 24..... "
What we have to deal with when our thyroid goes wrong is really tough and mostly invisible to others . Sometimes it gets better , sometimes we just get better at dealing with it , sometimes it just changes to a different sort of shit .
Dealing with all this change , changes who we are, and what plans we had for our life, and stops us being the parent we wanted to be ... but 'the parent we can manage to be' will be 'good enough'
tell him you're sorry and he'll accept it ~ just the same as you accept it when he looses the plot and throws stuff at you , and then says sorry dad a week later.
Hang in there .. you might or might not ever get back to being who you wanted to be ,, but your kid doesn't care about that .. he just wants you to still be there until HE's 40 .
I get my bloods done at the private clinic. Should probably get my vitamin levels checked and get checked for leaky gut. I doubt there is an issue there, my diet is good.
Is it worth getting checked for leaky gut? I went to a nutritionist back in the summer, and she didn't think i suffered with it as I showed no symptoms.
If you have found benefits from gluten free diet, that’s a strong indicator that you have leaky gut……it’s virtually inevitable with any one with autoimmune disease
Thank you slow dragon. I will get onto the vitamin tests tomorrow. I think I'll use medi checks as that's who the nutritionist recommended back in the summer. She also recommended MC for the the leaky gut test.
I have been supplementing with B12, vit D 1000 gummies, Iron liquid with ferritin everyday for a few months now. I had a B12 tested with GP back in the autumn and the results were not near top of the range.
If I have leaky gut, how do you correct this? I'm gluten free and will be diary free from tomorrow. I dont eat much diary anyway.
There's an American medic called Gundry who says leaky gut is due to lectins, often found in wholefoods. He says you need to eat lectin-free resistant starch and have a good collection of gut bacteria to digest the starch and produce butyrate, which protects the gut lining and repairs the leaks. He sells supplements with the aim of improving this process. The Wikipedia entry about him says that there are plenty of foods with lectins that are considered healthy, but that doesn't mean there aren't people without problems due to them. Have you any particular reason for wanting to cut out dairy? It's one of our most valuable foods and unwise to cut it out due to faddism.
Heard lots about Lechiteins, and how bad they can be. Yes I am a little reluctant to get diary completely. I like greek yogurt and it's good for calcium and protein. But I don't eat much of it, I eat coconut yogurt as well.
Try free from yoghurt ?? It's nice. I have hypo and don't eat gluten or dairy as it bloats me. I tried dairy free yoghurt and it's nice. Good luck. You will find your answers 😘
I eat a really clean diet no gluten no sugar no seed oils no processed foods. But am B12 (have injections) vitvD deficient. I have low stomach acid and absorption issue due to Hashimoto’s. Was your B12 ever tested before you started supplementing? tinnitus is a big symptom of low b12. A lot of your other symptoms can cross over.
seed oils started life as industrial lubricants, around 1920 it was discovered that if you process it enough you can market it as food. The oil goes through multiple stages chemicals are added I believe it’s bleached to get it to function as cooking oil. they are very unstable when heated, and are linked to high inflammation. When you think olive oil is extracted straight from the olives and bottled…. go on YouTube and do a search,
thank you, that’s really interesting. I buy cold pressed oils, it was my understanding these are unrefined and okay, is that right or should I switch? If so, can you recommend an alternative for hashimotos sufferers please? Thank you.
olive oil butter or animal fats lard goose etc also coconut oil.
Oil Purification of Extracted Rapeseed OilThe crude oil has to be refined to obtain high quality standards; the natural impurities like water, dirt, fatty acids, matter and color are removed through the following refining processes; drying, bleaching, neutralization, deodorization and degumming. Bleaching is used to remove color in the rapeseeds and in deodorization; the seeds are taken through vacuum tube equipment to remove traces that might bring bad odor to oil. The fatty acids in the oil are neutralized by alkali solutions. Finally the manufacture can add food addictives to make the oil more quality. The additives are also used to maintain the quality of the oil when it is being transported.
if there are absorption issue supplementing is not very helpful, B12 is one of the hardest vitamins to get into your system due to the mechanics of its absorption. Maybe check out the PAS site on health unlocked for more info. Before I was diagnosed with b12 deficiency I thought all my symptoms were thyroid problems turns out they weren’t they were all b12 symptoms
joey, first of all count yourself heard? We hear you.
Thyroid issues are sometimes very hard to deal with. There's s Post you may find helpful to read.....I'll do my best to link you to it, but should I fail, it was posted by Lotika . It is SO worth a read, not only for you, but it may also help your partner to understand just how difficult it can be with thyroid issues. If you look at the responses to Lotika's post, you'll be able to see just how many of us could identify with what she wrote.
If I was in your position, paying for a private endo I didn't feel was supporting/helping me to feel and get better, I'd consider doing a fresh Post asking for Private Message recommendations of a helpful, knowledgeable endo who specialises in Thyroid, who lives within reach of where I live.... and if necessary, I'd travel to meet that endo.
You need to know it is indeed possible for you to feel, and be better ..... and folk are here to help and support you in getting there
If I find/am able to link you to Lotika 's Post, I'll edit this and add it
Thank you for the post, i will definitely check out lotikas post. I will keep my next appointment and see how we go from there. It's not the service I expected for what it costs. I found out the gluten free thing by myself!
I really appreciate the support on here, I have not been on here for years but as soon as I posted there have been people here to support me straight away. I will for sure be a regular visitor to the forum. Hopefully I can come back with some decent advice next time!
It's an amazing forum...Admin, kind and generous with their knowledge and experiences, and every member, who does their best to share/help and support. Being able to express how we feel and what we're experiencing is so very valuable...both for ourselves, and others who may learn from what we say, and/ or , the responses, suggestions, advice we are given here.
Hi Joey I may get jumped on here but not everything is simply thyroid related. I became very, very low. After finding myself contemplating ending it all I realised I needed to talk to the GP. I was put on a half dose of fluoxetine (Prozac) and within a couple of weeks it felt like the sun had finally come out. I’m much better now. I think if you’re having suicidal thoughts you should go see your GP. They may be able to help? It’s not a weakness- it could just be your brain chemistry has been messed with and you need a little help for a while to find your balance again?
Hi, I had an appointment with m GP regarding my depression before Christmas and he would not prescribe any meds for it, just suggested the holistic approach, exercise, walking etc which I already do. For me there is a direct correlation between my depression, tinnitus and all the other hypo symptoms. When my usual symptoms improve, which is rare, my depression and tinnitus improves no end. Unfortunately I may only have a week if I am really lucky, or a day here and there.
I was suicidal when under medicated- I’m better now , quite the happy bunny, but still get emotional from time to time. However, this is more down to gratitude for how far I have come - I put it in my bio - a sort of case study to hopefully show other things do get better. I’m glad you are thinking of hanging around on the forum. We always need more people with lived experience to swell the ranks.
If you want to read the bio click on my face that will take you to my bio and a few salty posts (I really should learn to hold back). 😬👍
Keep listening to your body - because you are so right. Depression is linked to thyroid / hormones out of balance. Tinnitus too. Try and write down each days food intake, including salt / spices, supplements, meal replacements, etc. Look for what you didn't eat as well as what you did. One Dr. advised a 30 day meal diary. I'm convinced that processed foods are as much as an enemy as almost other toxin.
Good morning Joey82 - I keep thinking about where you are and what it was like when I was there - so long ago, so totally confused as to why the Drs didn’t have a clue. It’s not easy to exercise when you are feeling like a cloud follows you, a heavy cloud. I could read however, and that’s where my journey on self healing began. It would be decades before I found HealthUnlocked. One of the things I read about dealing with depression however, was sunshine, how even if we could just bask in the sun for 20 minutes (inside or out) how healing that was - and it did help.
The other thing was music, listening to music. Elton John had a line in one of his songs - and I only remember part of it…”If someone else is suffering enough to write it down…” and yes listening to the lyrics, as I so often really didn’t do. Music helped me out of the darkness as I read and and read, visited one Dr after another and finally emerged to a quite interesting life. I did find a Dr who really wanted to help, and you will too. In the meantime, try “Listen to the music…” (Doobie Brothers - playing right now even as I write).
Hi,Thank you for your reply, the support on this forum has been amazing and has given me hope, knowledge and direction with my situation. I really enjoy listening to music, many different types and it definitely helps. I normally exercise every other day and that has been key to really helping me through the though times.
I have my blood test next week, endo the week after and will be doing my medi checks blood test nest week for all my key vitamin checks. I'm looking fwd to it as I'm sure it will be another two steps in the right direction.
Going to go for a short walk now, its as ashame the sun is not out, it has been glorious this week and I tried to make the most of it!
With tears running down my face, I feel for you. This horrible, lonely, invisible disease has ruined so many lives. Please hang in there, it will get better one day. I’ve been there, but thanks to the lovely people on this site I’m doing better. Not where I would like to be, but much improved. As others have said, please keep talking to your family and explain how you feel, they will understand. It can be lonely at times but keep on posting and reading the journey of others. The medical profession has failed us, but we have each other. Try to dig in and find your inner strength. Remember, your son needs you! It will get better, just don’t give up.👍🙏🏻
Hi Joey. I hear ya! It's a nightmare at times. Just a suggestion, one of the best thyroid doctors is in the UK. Not sure I'm allowed to post his name ? If I were you I'd find a new endo ASAP! Get your adrenals tested as this could be affecting your thyroid medication from working properly. Practice deep breathing. Gentle walks, sauna etc. Start a food diary or better still, start the AIP diet! You have definitely not run out of options. Start making bone broth etc to heal your gut as this is a hugh issue for people with thyroid/Hashimotos. Hang in there as there is a way back from this nightmare!
Hi, I have had my adrenals tested twice and my endo told me the results were good. I exercise in moderation, as hard work outs take it out of me. Thank you!
Cortisol blood tests do not give an accurate picture of how your adrenal gland is functioning. Cortisol saliva tests are far more accurate (and done by many of the companies who offer thyroid tests).
I call this and PA the silent diseases which most folk have not got a clue about. Suggest you get your B12 tested and post results on the Pa forum - eliminate all sources of conflict apart from Thyroid, as they have advised, vits.- minerals etc - worth getting it all checked and when you have the full picture you can sort out any issues and start to get your life back. The folk on this forum can advise what to get tested and are knowledgable in many and varied health issues.
Our bodies are an interaction of many different systems and if one is not functioning properly it affects many other systems. Hence you feel like you are going mad, you are not, you try to sort Hypo out and something else pops up, getting the right advice and help in this era is almost like looking for a needle in the haystack. These forums are a God send and countless folk have had their lives restored to a pretty good level despite their medical conditions.
I was gibbering idiot when I got whacked with PA, Hypo and auto immune, could not keep one thought in my head for 2 seconds, kept asking the same questions, they persevered and at 81 I am still trucking, once I got some sort of balance, my mind started functioning and went from there. slow to be sure but mind clear and NO depression.
Accept there is a malfunction in your body and approach it logically, be determined you will get your life back and use these forums to guide you through, you will hit bumps but nothing you cannot cope with the right advice.
Ear noises etc - yes - upping my B12 jabs helped a bit but not cured, does not cause the annoyance as it did at start, I have learnt to cope with it I think.
Tip for when you are about to blow a gasket - into loo and let loose in there, works wonders.
oh god you poor thing its horrible and your quality of life suffers but you are not alone your family love you and they will know your ill so dont beat yourself up about it . us hypo sufferes have ups and downs too just to know and hear others suffer to oshould help you ,i get sinuis problems at least twice a year lasting 12 weeks on top of being freezing cold depressed dry hair skin swollen face and sore nose and my results are normal we need tp plod on and hopefullly feel better tomorrow keep on trucking joey your family needs you more than you know just go back to docs and tell them what you feel and hopefully they will help you sort your meds out good luck EVE,
Thank you for all your help with the replies. There is lots to take away and I think I need to look at leaky gut and vitamin levels and ensure they are in optimum levels. I have definitely picked up some good advice which I will take forward to my next appointment. Many thanks all.
It has taken several years for the levo to get my levels under control. Fatigue and tinnitus are still a part of my daily life. Just learned to live with that as part of getting older. Tinnitus simply has to be ignored. It's only a problem if you think about it. One thing that has helped with assimilating meds is to not eat for as long as possible after taking them. Generally I wake up in the middle of the night to pee so I take my levo then.
Hi Joey,
I so emphasise with you. I was diagnosed 9 months ago and have never felt so ill in my life. I was not coping at home or work, concentration problems, loss of memory from one minute to the next, loss of equilibrium, felt dizzy and faint, kept walking into things but the fatigue was horrendous, there were days when I felt so bad I couldn’t stay awake. I am a staff nurse and even I was not aware of how bad the symptoms were before I had an underactive thyroid. Initially I put my symptoms down to stress from the pandemic but as things got worse I felt like a zombie. Work were not at all understanding, I was referred to HR, interviewed about my performance, put on a months review. Referred to Occupational Health where I discovered my line manager was trying to get me medically retired. So much for the caring profession.
Anyway, I note that you are taking iron and ferritin , have you had these levels checked? Too much iron and ferritin can make you feel really unwell, it maybe worth stopping it for a while until you have had it checked. I take vit B12 and methyl folate and a complex vitamin B tablet daily and just added vitaminD at a pharmacists recommendation.
I eventually took early retirement, I have a small NHS pension to live off till I’m entitled to my state pension in 3 years.
I still feel more tired than I used to but the other symptoms have improved. I still get tinnitus but not all the time now, I thought I was going mad, I was going around the house trying to find this loud humming noise, or I would ask my husband if he could here a helicopter outside, it was so frustrating.
I totally agree with the person who suggested getting some help for the depression, it does take a while to work but worth trying.
Are you working at the moment? Trying to cope with work and home responsibilities must be draining both physically and emotionally.
Your medication is obviously not right and if your Endocrinologist is not helping I would consider changing.
I am still under my GP practice, useless, as they just check TSH, but I did find that after I cited the N.I.C.E guidelines to them they did at least listen to me.
Just want to hop on and give you a virtual hug and some encouragement , you have had a lot of good advice on here but I just want to add that it could be also related to other hormonal unbalance. I know when I was younger (I am 70 now) I was like a bear with a sore head for a few days before my period and I would regularly try and pick an argument with husband and eve demand a divorce etc ( I can still here my irrational voice screeching at him). Obviously children were party to that if they were at home! Then after a few more days I would be in my right mind again and have to go apologise for my irrational behaviour. It was like temporary insanity for me! Hormones like estrogen, progesterone and testosterone all play a part . Thyroid produces hormones and that are all linked somewhat and an unbalance in one can affect all.
I have found also that prayer and meditation practiced helps me to relax, mind, body and soul and to keep some perspective which can then enable me to choose to take a different route than the one the angry monster inside wants me to take during highly emotive situations. It can just be a split second that makes the difference and takes the heat out of the moment, I call them SOS prayers.
I so feel for you, Joey. I've been there, and thank God for The Samaritans. I can't make suggestions about T4 as I take Armour and T3, but some brands of T3 caused me a bad reaction and failed to work because of the fillers.Presumably this is why the official advice regarding T4 is to find the brand that suits you and to stick to it.
Regarding B12, my test results were always in range, but as my doctor explained, the tests are not indicative of what happens at cell level. Also, the oral B12 I was taking would show in the blood tests, but it may not be enough to help at tissue level. We did a trial of injections, and the effects were amazing.
The doctor also said that we needed more thyroid meds in Winter, less in Summer. Just wondering if this could this explain your deterioration.
Good luck, Joey, take care, and I hope things improve soon.
Did you develop your underactive symptoms before or after you went on the replacement therapy. It is possible your problem isn't thyroid at all. Adrenal Gland checked . I recommend NOW Super Cortisol Support from personal experience. Feeling ill and crappy all the time can take its toll. God Bless you and keep you and your family.
There is hope. You may have to look in many places to find what works for you. Finding HealthUnlocked is a great step in the right direction! Most of the people here are kind and have loads of experience.
The thing with Hashimotos / Thyroiditis is that there is seldom a One-Size-Fits-All (as you have already experienced with Levothyroxine and T3 / T4 combinations). Many of us have traveled on this same search for what works. Main stream medical has been taught that T4 Mono therapy is THE all and end all, and yet they keep hearing otherwise from those like you and me who continue to suffer. However.....
I have found a wonderful natural endocrinologist in Dr. Alan Christianson. He is here in the US and creating great waves of healing in the Hashimotos world. I am one of them...after 30 years of suffering. He has been studied the research that is out there and has been sharing it with all of the world. He has written a best seller entitled: Thyroid Reset that made the NY Times Bestseller list. Why? Because so many people have listened to his advice and greatly improved if not "Cured" their underactive thyroid. For me? I have just passed my 3rd anniversary of being pharmaceutical replacement hormone free. For me? It was an over-abundance of iodine / an over sensitivity to iodine. I believe that's why, for 30 years the Drs could not keep up with the fluctuations of "not enough T3/T4" and "too much T3 / T4". It all centered around how much iodine I was ingesting through various means - foods (iodine is in almost every food), vitamins, TABLE SALT (in the US most people buy and eat iodized fortified table salt without question or thought). It has been a long, long, road - but I am free and feeling better than ever! Dr. Christianson advises a 30 day experiment with iodine reduction / balancing. It worked for me. (I was still taking Levo) With an open-minded Dr. who assisted me with Dr. Christiansons theory (in my view, proven method!) I was able to step down from Levo (becoming steadily over-medicated as the iodine slowly dissapated), until I was managing on my own. It was both scary and exhillerating. Here in the 3rd year of being very conscious of foods that are greater in iodine content (egg yolks, seafood, anything dark red (what color is iodine by the way?), dairy, etc. (When my uncle used to run a dairy farm with mechanical milking machines, he would "sterilize the cow udder with iodine - yes it was no doubt trace amounts that got into the milk, which is already high in natural iodine.) I know immediately when I have had too much iodine. It takes 3 days to recover. (But I like some foods that are high in iodine!) Not everyone is as sensitive / take as long to eliminate excess amounts of iodine, but some of us are way over on the opposite end of the elimination spectrum.
There is hope, and you will find it. Try the 30 day iodine balancing diet (From the American Thyroid Association) thyroid.org/low-iodine-diet/ . Take a look at what Dr. Christianson has to say about how 75% of the people who paid attention to iodine intake improved their thyroid health. drchristianson.com/
Dr. Christianson sells his own line of vitamins, etc., as do most thyroid health gurus. This is not a recommendation for those products. He also gives away, for free a ton of information, research, etc. that helps one to gain control of their own thyroid health. For me? They are too expensive. I must take the information he gives and purchase vitamins, etc. elsewhere.
There is hope. And when you find what works for you, please come back here and share. Every day there are more and more people diagnosed with thyroid problems and at the end of their tether (as many of us have found ourselves). Main stream medical (for the most part) can't or won't offer relief. You will find your way! It is very doable.
THANK YOU SO VERY MUCH ! I was on Levo 4 3/4 years with increasing doses. I had no symptoms until I was on Levo and that is when I felt like I was hyper or on how text books describe people who take speed! God Love you for sharing. Read a lot, but never heard of this doctor and his theory. Have tried to balance supplements and am much improved having weaned myself off ( told doctor) back in 2017! Again thank you so much will follow up!
What symptoms do you notice first when you've had too much iodine. Just curious. One year after being on Levo I had low grade elevated BP which I never had even close to elevated BP, but Mayo Clinic med site indicates it will elevate your BP. I was never told and the doctor never ever acknowledged. Still on 5 mg Amlodipine. Appreciate so much you have been so generous to share. I was a farm kid and am very familiar with iodine used to wash utters. Handled that super stuff all the time!
Yes, elevated BP, nervousness / jittery, a constant feeling of anxiety. But then again, that’s my whole adult life (after birth of one and only)! Some achy joints, all kinds of off and on symptoms - (horrible menstrual cycles, bouts of depression). And yet, it’s all in your head says the endos, GP’s, etc. For TEN years I was “borderline”, nothing to be done. (Except for tranquilizers - we can fix you up with them, heh?). Until one day….a Dr practicing a form of medicine (an MD) designed to treat the root causes began to listen…(early 2000’s) Even then he knew that Levo didn’t really work…so it was on to Armour Thyroid and Thyroid Storms. Not his fault - he kept listening kept looking for new ways to treat (supplements, etc.). I really think all of my woes began with prenatal vitamins looking back. I’m one of those that has a very narrow window of tolerance with iodine. Now we know that prenatal vitamins then had way too much iodine for folks like me. (And how many other women have said their thyroid troubles began after pregnancy?!). Dr. Christianson explains why. How even now, prenatal vitamins contain less iodine that back in the 80’s and 90’s.
That same good Dr. (In a parting gift before he died) did a DNA test and found the genetic reason folks like me have trouble with iodine and have this very narrow tolerance - something called an MFTHR polymorphism. In less educated terms: dirty genes. Ha! It means my body does not eliminate toxins easily. Iodine becomes a toxin pretty quickly for me. And what organ is most affected? The thyroid - next the heart. How many people in my family died of heart attacks around 50 years of age? At least 3. And more especially if they smoked and drank heavily (all 3 did) - toxins!
My present GP says I know more about treating the thyroid than she does (why does that not reassure me??!!) Ha! Still, she helps me weed through the reams and reams of research. She agrees that Dr. Christianson is on to something with the iodine overabundance.
So glad to hear that you too have found your way to “weaning”. Let’s keep in touch!
I wonder if something called Hemochromatosis is related in any way I had an aunt who told me it run in the family and my uncle had it and I should be tested. I asked the doctor and he said Oh yeah and preceded to never order it. Frustrated and locked into an HMO and not having the private funding I let it go. It is the wild , wild West out there some great docs and the rest , there are no words! I agree. Thank you, friend!
My husband has hemochromatosis, and it's not really related - other than it is a genetic abnormality. It largely affects people of Irish and Scottish background. It is true that once the liver has become overwhelmed and overloaded with excess iron the other organs will "lend a hand". There is even some research that points to some diabetes being caused by a pancreas overloaded with iron. In the 30's the Dr.s called it "Bronze Diabetes" because the color of the skin became bronze in color. diabetes.co.uk/hemochromato...
All of that to say...The thyroid is an organ that could also become overloaded with iron. For my husband, his heart started skipping beats, nothing predictable or regular. Sometimes every fourth beat, sometimes up to 15 beats. The cardiologist did a complete workup (before the diagnosis for hemochromatosis) and said nothing was wrong with the heart, except for it was like it was in a "charlie horse" or seized up for a second or two. It was - stiffened with too much iron! He also developed diabetes before we discovered what was wrong. The "cure" was blood letting - ha! Yes, in 2018 the cure was blood letting. After about 18 months of loosing a pint of blood (the Dr. said the goal was to gradually starve the other organs to give up the excess iron) every month, the heart started beating normally again. The Diabetes - not so much, he still has it. We experimented with turmeric (it helped - proven by blood test to reduce / maintain ferritin at acceptable levels), and cabbage (it also helps!) It occurred to me that one of the favorite dishes of the Irish is Corned Beef and Cabbage. One Dr. with hemotomachrosis says he orders coleslaw with his hamburgers instead of french fries. Of course, Drs treating hemotomachrosis will never agree to any of this, however, it really happened just that way for us. Our Dr. said she believed the blood tests and that there was no doubt in her mind that turmeric "helped", but that it was the plasmapheresis that removed the years and years of accumulated excess iron. (My husband was 55 before symptoms began to appear). Incidentally, for women, Dr.s say that the menses often keep symptoms of hemotomachrosis at bay until after menopause. sciencedaily.com/releases/2...
Long answer, but who knows? I suppose if the iron has no place else to go.....the thyroid is an organ!
Yes, the sad truth is....there is no other choice. Either I do the work or continue to suffer .
I must say that Naturthyroid / Armour, etc. (other naturally derived glandular type pharmaceuticals) gave me a measure of relief / allowed me to lead a fairly active life as a working mother, volunteer, outdoor enthusiast - even a bit of a world traveler. And yet, had I known about the constant (self imposed) iodine toxicity, I wouldn't have needed the medicinal crutches! It's kind of like, well I'll just keep breaking this bone so we can keep shoring it up with this cast. The website "Stop the Thyroid Madness" is aptly named: stopthethyroidmadness.com/ She doesn't have a lot to say about iodine, but she was one of the first on a long list of those who knew a little more than my Dr. She also endorsed Dr. Christianson and his book / and programs on reducing iodine toxicity. Health is a wonderful thing!
It is ok not to be Ok. And most people are not ok emotionally. So u may s well retreat this disease will not clear up with T4 and not really quickly you may feel better in spring try vit D supplements most of us need in winter u could try passiflaura etc disease no fun very difficult life
Out of curiosity are you taking any other medications?…. When my tinnitus gets bad I take a supplement called (Lipo Flavonoid plus) and after a couple of days my tinnitus clears up enough to take the edge off the tinnitus.
Hey, Only when I need it. It works great for me but obviously its not the answer for everyone. I take magnesium daily it has no effect on ear ringing.
hi Joey.
My last T3/T4 results are: TSH 0.52 RANGE 0.270 - 4.2FT3: 7.4 RANGE 3.1 - 6.8FT4: 13.8 RANGE 12 - 22TOTAL T4: 110 RANGE 59 - 154
I don’t get why with these results the endo didn’t simply up your T4? This may very well be why you started to feel unwell after a period of wellness. I don’t feel well with a low T4. Feel you were advised to ditched the T3 much too prematurely? You were into a good thing here and then things just got ditched…? X
These results were in May, feeling good, end of June it all went very wrong, October went up 25mcg daily and then tinnitus got really bad. Endo advised me to come off T3 as he thinks it was down to excessive T3.
Then onto 150 mcg and subsequently 175 daily T4. Better than last summer for sure, but not massively. Tinnitus, dry eyes and morning groggyness little better recently. I dont really get brain fog anymore, was so intense at times in the past, more very light headed now, nausea and tiredness.
Ok… I might be oversimplifying this but it looks sort of straight forward to me… your t3 dose probably just needed to come down a touch (as it is a little over range) and your t4 dose probably just needed to go up a bit? This is probably why you felt good for a while but it didn’t sustain because the prohormone (t4) wasn’t high enough? I’m really really confused about why your endo didn’t just do this?
Well I think coming back and posting on the forum has highlighted a few things. I'm not always sure I'm getting the best from my endocrinologist and my lack of understanding of my results, which has improved over the last few days. There has been lots of great advice on here which I'll take away.
yes… never overestimate how good endos are, they are woefully ignorant sadly ☹️ I think you were really onto something good there… if I were you I’d go back to the t3/t4 combo but lower the t3 and raise the t4 just a little 🙂
It does look like a viable option. I'm hopeful that T4 only will work, as its easy to get, recognised by NHS etc. I have a better understanding now of my levels so I can go better equipped to my next appointment.
There is the MTHFR gene mutation/variation. Until I read about this I had horrendous depression and mental health problems, and frequently felt like you have described. It's separate to thyroid levels of medication. It's connected to Methylation. It took me ages to get my brain around it, but since I've been taking Methylated multi B vitamins my depression and anxiety have disappeared. All the B vitamins are very important. Wait until your B12 blood test results, but all the B vitamins are water soluble so are expelled via urine if not needed by the body, so safe to take.
However, this is a quote from SeasideSusie "a B Complex doesn't contain enough B12 to raise a low level, it's more of a maintenance dose, there is 400mcg B12 in Thorne Basic B and most B Complex supplements contain a similar amount. You would need a separate sublingual B12 methylcobalamin supplement in addition to the Thorne Basic B. "
I hope I've made some sense, my words don't come easily these days!
Guys, these are all good points to take away and will. I will work away regarding the points around adrenals, vitamins, absorption, various other hormonal problems and so on.But, when I was on combi T3/T4 I started firing on all cylinders and got to a really good state of health, not perfect though. And I wasn't supplementing or gluten free. My diet wasn't even that great.
This suggests to me that the core of my issue is my T3 & T4 levels. Although I now understand there is more work to my self supporting my thyroid health which I will do.
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At the end of my tether :-(
At end of my tether
At the end of my tether
End of my tether
