Hi, hope someone may be able to shed some light on this or has had a similar experience? Tsh now 0.01 but symptoms more hypo not hyper. I'm thinking adrenals and pituitary. Recurring infections, ear ache constant, not handling stress (tiny situations) which is not me. Cortisol previously recorded as low. No action and previous endo said not endocrine!
General Dr appt this week but what to suggest, where to go now??
Thank you in advance?!
DimDims, you really need FT4 and FT3 tested in addition to TSH. Very little Levothyroxine can suppress TSH in some people but if their T4 is low they probably won't convert enough T3 and it's low T3 which causes hypo symptoms. Try and persuade your GP to test FT4 and FT3 or consider private testing from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...
Ask your GP to test ferritin, vitamin D, B12 and folate too. Low/deficient levels are common in hypothyroid patients and good levels of ferritin aid absorption and uptake of Levothyroxine and good vitD aids T4 to T3 conversion.
Thanks Clutter. My t3 and t4 are in a middle range of normal. Another Dr said my adrenals wouldn't cope with thyroxine. No consistency leaves me confused. Will ask re this at appt this week.
DimDims, it would have been more helpful if the doctor suggested or prescribed something to support your adrenals so you don't have difficulty tolerating Levothyroxine.
There are members here who are very knowledgeable about adrenals and who may be able to suggest supplements if you post a new question with your cortisol results.
Thank you. I'm waiting for a further random cortisol test to come back. not sure what the previous result was and I wasn't told it was low. Need some consistency, decent Dr and action! Like everyone I guess
It's best to get a 24hr saliva adrenal test. Blood cortisol never give a true picture as cortisol fluctuates to wildly and you'll have similar symptoms with both low and high cortisol.
NHS do a 24hr cortisol urine collection (not good if you have a mixture of highs and lows as it doesn't show fluctuation just total amount) DHEAS blood test (DHEA is low in late stage adrenal insufficiency) short synacthen test (will see if your adrenals can produce cortisol when stimulated by ACTH a pituitary hormone) renin: aldosterone ratio also gives and indication of adrenal health (don't eat anything salty for a few days before)
But remember the NHS ref ranges are incredibly generous (so there's less people they need to treat!) none of those tests have been as useful to me as the saliva test I paid for myself. I've just posted a load of supplement advice for someone else for adrenals. I'll find it and post it again here.
Reposted from a response to another user.
Have you had your ferritin checked? It would also be good to get your Vit D, Folate and B12 checked.
The liver is the main area T4 is converted so lots of support there is useful. I take milk thistle, N Acetyl L Cysteine and glutathione but I'm looking at introducing more liver support as time goes on. Getting a full nights sleep and making sure you are in bed by 10pm helps.
Low cortisol I've used liquorice, Siberian and panax ginseng, ribes negrum Gemma therapy. High cortisol I've used holy basil, zinc. I use them at different times based on my saliva results. I also used rhodiola rosea, everything ive read says it's an adaptogens. Used at low doses it helps low cortisol high doses helps high cortisol.
I also use an adrenal cortex and plenty of vit c and magneasium (I use the magneasium at night as it makes me sleepy)
I've also looked into Pregnenolone, I'm going to be introducing that further down the line. From my research (lots of conflicting advice out there) I'm starting low 2.5mg per day and slowly building up to no more that 30mg per day all the time looking out for signs of too much cortisol (swollen red face and hands) and too much sex hormones (symptoms depend on sex hormones)
If this fails I'll be trying hydro cortisone.
Adrenals are incredibly important and are often overlooked. Since my adrenal crash brought on by 4 months on levothyroxine I've felt very ill. Important to get those sorted.
T3 would be good as your not converting, you could look at introducing NDT further down the line when adrenals and ferritin are healthy. I'm going to try having a combination of NDT and T3 when I'm healthier.
Spanglysplash thanks for taking the time. That's interesting. They were talking about doing a synacthen test. I did the 24 urine collection test and the physician ordered it again as she said I over collected?! How can you over collect on a 24 hr urine test. Anyway, no one followed this up when I expressed my concerns, request for action and outcomes ..... When you did the saliva test did the NHS listen/take on board the outcome/results? I heard they won't take it on board so don't want to waste money I don't have on private testing. Do you think the synacthen test is worth going ahead with?
Yes I'd go ahead with the synacthen test for sure.
I understand your worry about wasting money but like I said above its about informing yourself so you can make steps to heal yourself. This test gives you the best info on how to do that for your adrenals.
The NHS have very liberal reference ranges, this means it's very difficult to actually get treatment. Even if you did it might not be suitable treatment. I'm going through the NHS process so I have a record of it all for work. As I currently am unable to work and they are not being overly supportive. Also because if they do prescribe me with hydrocortisone I can get back on my feet quicker.
Did they accept your results, even if they are not being as supportive as they could and should be? I'll look into it. I think it's with Genovo
Well since I have found a good NHS endo who has taken me seriously and knows exactly why I'm so ill I've had a lot less questioning from work. I think it helps to get the back up from a medical professional in this. Dr P also wrote to them explaining what was wrong with me.
You're so right, this has been years of no action and my middle now has a ridiculous thickness. Nodules on thyroid common, one at 2 cm seems to aggravate my voice box at times and I've had recurring throat infections/tonsillitis.
I have felt hypo with v low tsh. In fact, i feel best when my tsh is suppressed.
T3 is the one to look at - that is the active hormone, if it is low, you need to up your dose. NHS will not test t3. Suggest you get your own test from genova. Dont waste your energy banging your head against the nhs brick wall, they will never agree to increase your dose because all they care about is tsh being within their so called range.
Generally t3 needs to be at the high end, i feel awful if mine is mid-range. But i guess everyone is different
I also have v low cortisol but again, NHS not interested until you develop Addisons, so cannot advise re adrenal fatigue.
Thanks Bluedaff, I know, it does turn in to a real head banger! And that's just trying to make some sense of it all, let alone get an clear and consistent professional input!!
HI My TSH is immeasurable, we go by my T4 and Free T3 for treatment.
Jackie
I wonder if I would get fobbed off with that here. Is your endo good if they go by that Jackie? My T4 and T3 were mid normal range but I'm not sure if Free T's were tested.
Appt is tomorrow so I'm trying to be pro-active and go prepared with some questions to get some clearer answers, some direction and action!
Before seeing an endo my GP would not treat or refer but my FT3 was well below range.It can happen with kidney or liver disease.I have trouble when in hospital though.I had tests for addison etc.
Jackie
Look into Addison's disease, as for tsh results make sue they test your FT3 FT4 - Clutter has the right info - just make sure you ask for your blood test results printed out, they are great to keep an eye on inconsistencies your Drs may try and hide under the carpet ( just remember Drs don't know everything & a lot more of them know even less about the thyroid )
High cortisol will suppress TSH. Have you had a 24hr adrenal saliva test?
NHS wouldn't do the saliva test and kind of poo-poo'd the idea that it gives the most accurate result. If I look in to why it gives the most accurate result then maybe I could reason with them. I heard the NHS wouldn't listen to the results of private tests, do you know if that's true? They are talking about doing the synacthen test.
Most NHS do poo poo the saliva test even though it gives an accurate idea of cortisol available to tissue (rather than bound and unbound cortisol in blood) and what it does over a 24hr period.
My endo (NHS) wrote all the results down from my saliva test but he's unusual. My GP also scans in my private tests and keeps then on my notes, but they are also unusual.
It's not really about whether they are useful to the NHS, they'll be useful to you. You will be able to take steps to heal yourself once you have the results. If you wait on the NHS you'll be waiting a long time! Do the tests the NHS offer, but often unless you have full blown addisons or cushings they won't treat even if you're completely incapacitated.
You're so right. I was going to try the adrenal reset diet, or perhaps take some natural adrenal support but was worried about messing about with stuff. Will see what they say tomorrow and where I'll go from there. Alone or with NHS by my side. Thanks so much. Was the saliva test expensive?
It was £68 I used the discount code on TPAUK treasure chest website for registered users.
Adrenal reset diet does help. FB page FTPO: thyroid patients only (adrenals) also has some specific advise as does this site if you post your results.
I'm happy to help when you get your results. I'm researching like crazy at the minute to get to the bottom of this and get well.
If you have high cortisol there are lots of herbs that can lower cortisol holy basil, zinc and others (I'd have to check my books)
I have a suppressed TSH, and am still far too sick to go to work.
Still not sure whether this is thyroid related, or another mechanism. I'm currently taking adrenal support, and this is giving me small improvement. A 24 hour saliva test showed my adrenal were all over the place.
So sorry to hear that SilverAvocado, poor you. It's so awful when you're feeling that sick with it all.
The endocrine system seems so complicated!! But not impossible so fingers crossed we'll get there. My gut feeling for me is it's my pituitary and adrenals and not my thyroid. But hard to get to the bottom of it and instead of putting together the jigsaw, they'd rather shut you up with whatever is a quick fix (not interested in whether it actually fixes anything) and send you on your way. Who in the NHS accepted your saliva test results??
Nobody in the NHS accepts it!
My understanding of the adrenal situation - and I'm only just starting to learn about about this, so may be Barking up the wrong tree. Is that conventional medicine medicine believes there there are two illnesses, Cushings and Addisons. These are both both really extreme conditions of of having far too much or far too little cortisol.
But those are both very extreme, and you'd be practically in coma with them. But what they don't believe in is adrenal fatigue. Which is a state where your adrenals have become over - worked due to emotional or physical physical address.
Alternative practitioners of all kinds do believe in it, it seems to be quite consistently talked talked about. I he a it compared to pre-diabetes, is before before your adrenals completely conk out, as they e getting getting more and more weak.
This is what what the 24 hour saliva test will tell you about. The cortisol shows a distinctive pattern during during the the day, of being being high in in the morning and low at night.
I've split this into two as it's got a bit long!
My experience experience is is that I got the 24-hour test done by a private gp on the Thyroid UK list. I'm happy to give full details in a private message you're interested.
Mine showed my cortisol was far too high in the morning , then low all the rest of the day, and below range at night. I showed this to 2 NHS endocrinologist, and they they both poo-poohed it and had no idea what I was talking about.
I don't know what what that particular pattern means, as is quite unusual, but having read a bit, I think think it's quite bad. I've had thyroid cancer, 2 operations, radiation, etc, so that isn't surprising. Have fatigue at the moment moment that's too bad to work, and just just been diagnosed with chronic fatigue.
Anyway this private doctor has set me up on Nutri Adrenal, T-convert, AdrenMax, and DHEA, and I'm seeing improvements at the moment.
So a short answer is that unless your adrenals have COMPLETELY shut down , you won't get anything from conventional GP or Endo. You will have to work out your own treatment plan.
The tsh is apparently useful for measuring the message from the pituitary to the thyroid, so disruption in this apparently shows up pituitary prob and not thyroid!??
Again, I'm just learning, so not sure about this. The clear cut pattern for pituitary problems, secondary hypothyroid I think think it's it's called, is a low TSH, but with FreeT4 and FreeT3 also low.
So the T4 and T3 measures indicate indicate that that your aren't aren't getting sufficient thyroxine to the cells, but your pituitary is not complaining as it it should should and pumping out TSH (thyroid stimulating stimulating hormone).
Again, you will struggle to get Free T3 measured on the NHS. My endo will sometimes do it if slightly tricked. It seems like GPs almost never do, and everyone tends to resist it unless your TSH is suppressed.
Thanks so much for sharing all this info. So good of you to take the time. Will let you know how it goes. They aren't endo but general physician at hospital
The problem is with the pituitary, if you are not on thyroid meds.
Thank you faith 63, I think it's pituitary and adrenal. Not on any meds.
Had appt and unfortunately a waste of time. He will refer to endo, which isn't too bad but it is to the endo who said i didn't have endocrine problem. 😔 I told him about my experience there but just didn't listen. Need to sort out myself, which is mostly what we need to do anyway.
TSH 0.01 - does it matter?
Hypo but getting hyper symptoms 
Normal TSH but many hypo symptoms
TSH 0.01
