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!
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?
Hang in there.
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.
Keep on keeping on.
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.