I am so unsure and worried what is going on. Can these be symptoms of hypo? It’s just I read these are more related to Hyper? but my bloods def are not showing hyper. I wasn’t too bad after I began 50mcg T4, then I increased to 62.5 as 75 felt too big a jump and I’m on 62.5 now 4 weeks. I have to take a proprananol 40mg to help and sometimes a diazepam to settle body. Heart rate calms as day goes on but it’s never low. I am not anxious but this, pulsatile tinnitus and headaches everyday is so hard to cope with and I’m so sensitive to any hormone change. Please tell me this can get better, it’s been 3 years now though thyroid treatment began this year privately.
April results (on 50mcg T4)
TSH 1.89 (0.27-4.2
FT3 3.7 (3.1-6.8
FT4 16 (12-22
TGA 15.6 (0-115
TPA 17.7 (0-34
Most evenings are better and I can feel normal.
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FoxyTed
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Sounds like you have low early morning cortisol. I expect your adrenals are fatigued. It wouldn't be surprising with that low FT3! Your conversion is poor, but that's probably down to the proprananol, which is known to negatively affect conversion. Can you not get a different Beta Blocker prescribed?
And it's probably time you went up to 75 mcg levo, anyway. There's such a thing as increasing too slowly, which doesn't do you any favours, either.
And how are your nutrients: vit D, vit B12, folate and ferritin? They all need to be optimal for all this to come together.
Well, I didn't suggest you add T3, I suggested you change your Beta Blocker to one that doesn't affect conversion. Your conversion would probably improve.
Your cortisol levels do seem fine but that was in June. I don't know how quickly they can drop, but living with that low FT3 is not going to do them any good.
GG iv not been on proprananol that long and my T3 was low whilst I wasn’t on it. I can try and manage without it. Things seem to get worse when I increase T4 - anxiety up, that’s why I went to 62.5. I’m feeling trapped by it all, I’m afraid. Would things eventually settle down if I increase to 75 do you think?
I had that cortisol test done as my functional doctor advised A cortex but it only increased anxiety.
Would it help any if I took the 25mcg T4 before bedtime?
FoxyTed I have seen you acknowledge quite a few of my posts and I can see why. HR etc. greygoose gives you a really good starting point. I do have lower than optimum cortisol but found recommended adrenal support made things a bit worse for me (too edgy) BUT it’s a necessary step to check if this is your situation.
That’s the first thing I would study applying it to yourself. I found Vit A,Cand E more helpful than ‘adrenal support’ so try that, perhaps even before adrenal support in case that confounds things further.
Thanks FallingInReverse. Vit A (beta-carotene 1500ug from 9mg). Vit C 150 mg (Dr Myhill recommends to bowel tolerance and it took me a while to recognise that it was upsetting my bowel at over 200mg) so reduced it to 150. Might try to increase it later. Vit E 430IU. Have not particularly pinpointed improvement as such but reducing the Vit C definitely helped.
Really too many other issues to attend to but as this is NOT upsetting anything I am sticking with it.
Oops forgot to say. The amount of supplementation is pretty standard and the fact that I don’t think I am getting any bad effects, I have not checked levels.
Always get my D checked but from what I can see it’s not all that easy to overdo it but obviously checking is a good idea.
My problem definitely Low T3. Lots of ‘preparation’ still ongoing.
Hi Tist, I tried adrenal cortex and felt worse. If you see my cortisol results they look ok so I’m lost, it must be the T3. How does A, C and E help please?
1.) Dr. Sarah Myhill talks about this in her overall strategy. You may find this on her website if you do not have a copy of her book. The Underactive Thyroid.
2.) When I was looking at adrenal cortex, I noticed some ‘brands’ also contained these particular vitamins. So I thought (due to both sources of info) I would give them a go on their own. As with all vitamin supplements (I think) it’s difficult to tell if they are working but they were doing no harm as far as I could tell. Since starting Vit C I think there is a noticeable improvement in general immunity but proof is impossible. Old people (me) I suspect have built up a natural immunity over many years to many common infections, unlike children who are little Petri dishes.
There is a third option, much like yourself my cortisol looked kind of OK but in my case running a bit low. Correct pattern but lowish. Maybe there was no need for adrenal support. However we cling to anything which might help us even if we don’t quite fit a category - I find. You have tried adrenal cortex perhaps it’s just not for you (or me).
Agree on the adrenal cortex. These vitamins are recommended by Dr Myhill. Not everything of hers agrees with me. Constant (but enough space to check) attempts at finding my triggers for fast HR. At the moment my big suspect is hypoglycaemic issues. It’s my ‘belief’ that my brief foray with T3 re-sensitised my body to its issues with sugar. My T2D diagnosis was ‘rescinded’ but my body is definitely still reacting - which it was NOT when my diagnosis for T2D was actually in place. Perhaps a case of the blood tests again lagging behind the actual happenings in the body - just like it can be with our thyroid levels - TSH in particular.
Remember hyper symptoms can equally be hypo symptoms. So as greygoose suggests you might still benefit from a further increase of Levo. You can only try.
At 75 mcg Levo my pulsatile tinnitus kicked in. My theory is that, for me, that’s exactly where I should have gone for T3 instead of more Levo but I may never know.
Thanks Slow, I am taking Eltroxine Mercury. I have 50s and 25s - Do you think I could try taking the extra 25 T4 before bed? I so want to increase it to 75 but can it be rocky for a while? Im not that long on the proprananol and yes I can decrease slowly to be honest it doesn’t seem to help much anyway.
I haven’t had recent vitamin bloods done since Jan all was good , I do have another kit but was waiting to get it done when on the 75 T4 a while as the test includes thyroid.
I am taking seeking health MF b complex, zinc, Vit d, Vit c, magnesium glycinate and good quality fish oil. Almost GF except an odd pudding. My diet is healthy.
Can this happen when one increases T4 that anxiety levels increase? This is my main issue mostly mornings.
but those results were from april when taking 50mcg .......since then you have had some failed T3 adventures, and are now taking 62.5mcg but only for 4 wks , so i think you need to wait a couple more weeks and test after you have been on 62.5mcg levo only for at least 6 wks , to see where you are now.
also , do bear in mind that it takes at least 6 wks to know how any dose will feel once things have settled. 4/5wks is too soon to tell what 62.5mcg will feel like.
Tks Tatty, it’s so hard as we all find and it’s a journey of trial and error. I’m pleased to read you say it’s too early to tell what the 62.5 will feel like as I keep worrying is it only me!! having these wobbles adjusting stuff☹️
I need to come on here to get some help to get me through.
For some people it’s my ‘belief’ that Levothyroxine is experienced as a ‘clunky’. There is little finesse. It does the basics and no more (for some people). I also think it may be particularly relevant to other patients, starting with their Subclinical experience. A bold statement.
Recently subclinical seems to be the subject of quite a bit of important research. Many moons ago when doctors checked for clinical signs of hypothyroidism and before blood tests existed, subclinical hypothyroids got treated. Not so nowadays - even although truly leading endocrinologists (not UK) now seem to be coming back around to this.
The UK National Guidelines almost make treatment for subclinical impossible, due to GPs not understanding what they are dealing with and endos really not taking responsibility for their specialism.
I was subclinical 25+ years ago. Struggled on for 18 years and finally when blood tests showed I had become full blown hypo it took another three years before I was told. By that time I was acquiescent and just wondering how long I had to live.
In many ways since actual diagnosis and treatment, life has often felt worse than if I had been left alone. Diagnosis, and the hope that engenders, is drastically devastating when you still don’t feel well on the medication. Your description of your symptoms have been reported by many on the Forum many times. It’s difficult to hear that. You just want to get well!
There are a number of reasons medics shy away from treating subclinical.
1.) It may be a ‘blip’ e.g. post natal, temporary situation.
2.) They don’t know enough about hypothyroidism. They don’t know the signs - don’t examine patients.
3.) They rely almost entirely on blood tests - which we seem to understand better than they do!
4.) Maybe it really is more difficult to treat subclinical and it’s bother (they don’t want bother). It’s very difficult to get an appointment with a GP at the moment to discuss hugely important aspects of one’s health/treatment of chronic illness. However, phone up for something fairly simple - a case of thrush! - and you can get a same day appointment!
However NOT treating subclinical or even full blown hypothyroidism, just saves up problems (for the medics) for later. Unfortunately this is a bigger problem for the patients, as they just go on having problems and developing other avoidable chronic illnesses.
I did not mean to write a thesis here.
However my thinking is you have to take a step back here. This will pass BUT know that it’s an extremely annoying situation.
From my experience what’s happening is ‘normal’ under NHS treatment. However of course you may need to ‘tweak’ to your own needs. Personally 12.5mcg increases are fraught with difficulty for me. Maybe for you too.
I have had to mess with my levo dose recently (won’t go into the why here) and it has surprised me that even after 3 years and four months of treatment, I have been caught out again, trying for a 12.5 mcg increase. Today I have reduced the increase to 6.25 mcg because I can’t handle the symptoms. I will see how I get on today, before re-introducing the other 6.25 mcg.
Hi Tist thank you for all that. I’m sorry to hear you too are struggling. I only had this come crashing in around me 3 years ago and then started 50 T4 few months back after going private. My anxiety, heart pounding/racing has all ramped up again since iv increased T4. This morning was horrendous again it’s like there’s no way out when this is going on. I too do not understand this, could it be my body/adrenals can’t cope with the morning cortisol? I have dark thoughts when all this is happening as I can’t see a way forward. I can be more settled by evening time though the increase has unsettled this a bit too.
I am trying from today to take 12.5 every other day to see what happens. What dose are you on now and has each increase eventually settled?
OK I have been taking the meds a bit longer than you.
I reduced to 75 mcgs levo as a first step to a new prescription of T3. However endo has finally written to me telling me he is not treating me. I was on 100 mcg levo (after prolonged period trying to get there) but I did not like my T4 being pretty high especially when my T3 was very low. It’s never been good but now it’s barely ‘in range’.
The endo told me he wanted me, likely on 50 mcg. On the Forum we look for T4 in the upper quadrant but my T3 has been persistently low and dropping.
T3 is the obvious answer but I have as yet to attain that.
Yes all changes up and down so far have settled but like you, I really don’t like it. I can feel paranoid (in my case), anxious, doomed. However NOW I definitely see the association with messing around with my medication. Although I have experienced these symptoms many times, I still find them pretty frightening BUT they are definitely thyroid/thyroid medication/changes in dosage and when disruptive symptoms do settle it’s great.
Peace!! Yes when in the thick of it, that’s what I ask for too.
P.S. these symptoms are definitely recognised as hyper but as medics seem to know so little about hypothyroidism, they don’t know that the literature/research covers these symptoms as hypo. They get their knickers in a knot especially if you have a low TSH. They are incredibly ignorant.
Gosh Tist it’s the pits!! Yes I know this is all hypo. I don’t know now whether to go back to 50 or extra 12.5 every other day, I think I’ll try and do the every other day - have you tried anything like this to get the T4 up a bit? Thank you for replying💐
Go with your ‘gut’ choice first. I don’t like alternating my dose, just feel uncomfortable with that but plenty of people do it and it’s fine. If you make the decision yourself (even if it does not work well) you have created more ‘power’ for yourself. I find it’s easier to live with the decision if I know I made it for myself (with as much advice and information I can collect) and take responsibility myself for the outcome. Don’t rush it. Again I find if I give way to “Oh hell, just do it” it’s more worrying.
humanbean has pinned a great post about “Fear of Hormones”. I found it very good when I needed it badly. Perhaps she will pick up this tag and point you more directly to it.
Tks Tist. My gut is going back to 50mcg as I can’t live like this, the morning heightened anxiety and low mood are too much to bear. I will get my full blood panel done in a weeks time and see if I can improve anything there.
Have you had your 4 point saliva cortisol done? I had my done recently due to failed attempt of T3 and adrenal cortex and guess what - it came back good! so I do not understand.
Yes Easy I take the T4 on empty tummy. I had covid when I tried increasing and it may be that covid upset the apple cart! I am back to 50mcg T4 for now until the after effects of covid settle for me🙏🏻. I am on a journey but determined to get well. I hope you are keeping well💐
Yes, because you OBVIOUSLY need T,3. All of your symptoms point to that. The T4 could be making you sick. If your body is rejecting an extremely small dose of T3, It may not be the T3 at all. When you try different things, all the other variables have to be constant. Give it a try. Read the latest post on T3. Don't give up. Love, Easy
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