I had the full bells and whistles blood screen by an NHS endo last year. I was sent a letter telling me I’m ‘healthy’ but I sure don’t feel that way. Some of the test results are below and I’d welcome any feedback. I’m 60 years old and post menopausal, I was medication free when the tests were done.
TSH 0.93 (0.23-5.6)
FT4 12 (9-28)
FT3 4.4 (3.1-6.8)
ACTH 19.8 (7.2-63.3)
Cortisol pre SST 216
Cortisol post SST 611
Renin 14 (5.4-60) (this was asterisked)*
Aldosterone Liaison 159 (100-800) also *
Potassium 4.1 also*
Creatinine 60* also*
Urea 5.0 also*
LH 42.2 (2.4-12.6) also*
Testosterone 0.2 (0.3-1.7)
Progesterone <0.5 (0-6.0)
The asterisked results were also printed in red. If anyone can explain why this would be and anything that looks obvious, I’d be really grateful.
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Jamima
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Just about everything is low, really, isn't it. Including the TSH, which shouldn't be that low considering your low FT4! It all looks like a pituitary problem, to me, given the low ACTH and the rise in cortisol post SST. But most doctors think that any result within the range just has to be OK. They cannot suss out the subtleties and join the dots.
I should imagine all the results in red with asteriks are out of range, but impossible to say if high or low without the range.
Thank you Greygoose. Yes, low being the operative word on a daily basis. I’ll keep trying to find someone to join the dots. I hope you’re better since your last post.
I’m sorry, where I haven’t put ranges indicates there weren’t any on the results.
It looks like the loop, as Grey Goose says, is broken between pituitary and its associated parts. In theory - depending on who you read - the idea is that once you get cortisol sufficient enough, thyroid hormone can then be appropriately metabolised (+ cofactor its: D, B12, folate, iron). From all I've read, I think some people only need to add in the thyroid piece of the puzzle to get the loop going around again. Your results look like you will need adrenal support to make that loop go around properly again, and as you've mentioned negative reactions to T4 in the past, and felt much improvement on steroids, I wonder if you might take the STTM approach.
Their approach is: 25mg steroids daily then taking DATS (Daily Average Temperature readings) Take BBT on waking, then 3 hrs later, then 3 more hrs later, then another 3 hrs later add them all up and make an average and do this for 5 days. If there is more of a fluctuation between the averages than 0.2 degrees Celsius then aldosterone needs support - and tbh, your Aldosterone & renin are low so it's likely an aldosterone issue is there, but let's try one step a time. So, the STTM approach is to take 25mg of steroids and then increase T3-containing medication, be that combo or NDT + T3. I'm not sure how they feel about T3-only.
One thing I am not sure about, radd may be able to shed light here - I was under the impression that low aldosterone would produce high potassium but these results show low aldosterone AND lowish potassium (assuming the range is the usual of 3.6 - 5.2, I've read K needs to be above 4.2 from STTM) AND low renin, so the aldosterone component is confusing me a little...
I do want to leave a small disclaimer that I am only throwing out food for thought, and to an extent regurgitating chunks found in different thyroid books. I know STTM can get people's backs up, so this approach may be met with some resistance. However, if I were you and I had these results this is what I would likely do. It should also be noted that long term steroid use is not advised, and once "optimal" on thyroid meds, they need to be weaned off slowly.
Thank you, I appreciate your help. Tbh, I’ve been experimenting so much I’m happy to try anything. I’ll do the BBT and see what the results are. I don’t think I could manage 25mg HC, 10 split into 2 doses is about as high as I’ve gone and that seemed to be enough, so I’ll try it with that. Do I take the HC before taking temp?
that sounds good! Have you tried reintroducing thyroid medication while on the HC? Take the morning BBT when you wake, before the HC, yes I believe that’s correct.
Thank you, yes I’ve tried introducing levo again at 50 dose and after about 3 weeks I just felt really awful, I know it’s to be expected when starting levo but it’s a bit frightening - I get what feels like very low blood pressure, feel weak, terrible fatigue and brain fog and light headed on standing, so I’ve reduced down to 25 and that’s where I am just now, the symptoms have abated somewhat.
In that case, I think maybe aldosterone is playing a role as this has some responsibility for BP. It could also be that your HC supplementation is not high enough. What about other metrics like BBT, bowel movements, skin/hair/nails, weight etc.? Also, have you tried T3? Some fair better with NDT/T3 than they do with levo
BBT is basal body temperature, so your temperature using thermometer.
An NHS endo is as likely to prescribe steroids as they are T3, it’s a hit and miss. My current endo is likely about to be prescribing me steroids (he has said it’s his intention pending final tests) but he is private. that’s off the back of my adrenal saliva tests that show extremely low cortisol as well as my medical history that indicates I’ve likely had low cortisol some years due to improperly treated hypothyroidism.
Thank you. Would you recommend your endo? If so, would you mind PM me details please?
Is he only interested in your cortisol saliva test as he’s private? I thought nhs endos weren’t interested? They refused to recognise my two tests I was advised on here to get.
I’m not regular with BBT but it has increased since I’ve started my ‘supplementing’ journey. About a year ago it was under 36, and it’s now 36 or above, I’ve not had an under reading in the last 3-4 months. My blood sugar dips quite low at 5 pm everyday, not sure why it’s that time, but it’s very regular, and can dip as low as 4. My bowel movements have changed a lot since I started HC and levo, now daily, previously 1-2 per week. My weight has never really been a problem, but I’ve definitely gained at least 7-10 lbs in the last couple of years, mostly on my belly! That could also be menopause. I’ve got some metavive I and was considering adding it to the 25 levo but wasn’t sure about what might happen.
Personally I would not add metavive as it’s not standardised and you could just be sending yourself all over with random amounts of stuff. If the levo seems to be improving the bowels then that seems to be a good sign you are metabolising the thyroid hormone in some way. As you’ve reached a bit of a stalemate with the T4 in your position I think I would do a thyroid panel to see where I am at, and also have a look at conversion. Altho i do think your conversion doesn’t look all that bad from your results above, esp. considering your tsh is so poor. Have the blood sugar issues begun since the HC use?
The other question is - do you feel you are tolerating the T4 better now that you are on the HC? Additionally, maybe try adding a teaspoon of good quality salt to some water and downing it when you feel dizzy. If your aldosterone is the issue then that might help your symptoms a little. Do you crave salt?
One more thing I forgot to add, every morning I feel hungover despite not touching a drop! Rather annoying. I’m absolutely parched, dry gritty eyes, sinus headache, really groggy. The blood sugar issue were before HC and seem to be milder since using it, previously I was actually shaking and heart pounding, now I just feel a slight sugar low. Yes, I do feel I’m tolerating the levo better with HC, and yes, I absolutely crave salt, from someone who was very salt aware and used it sparingly I’ve now almost worn out my salt grinder. I also feel better from 7pm onwards, and most clear headed around 10/11pm, I know that’s adrenals.
IMHO those initial symptoms you mention sound like you have low cortisol in the morning and the thirst is linked to aldosterone, I believe - all of which I would wager exacerbates your hypothyroidism and is being exacerbated by your hypothyroidism too (as per “THE LOOP”). The craving of the salt is very adrenal - aldosterone seems to run as a common thread for you. I am hoping radd will arrive and delve a bit more into the detail of that. Personally, I would follow that salt instinct and consume more but I’d also increase my potassium intake given your results - avocado + tomato juice are good sources as well as cream of tartar if you stick it into an adrenal cocktail. There is a theory that too much salt can beget more salt wasting, so I’d just experiment with the potassium and the salt sources and see what satisfies best. In addition to that, I’d get that thyroid panel done. If I were you I think I’d raise the HC but if you aren’t comfortable doing that maybe raise T4 very very slowly and see if that is enough to set off the loop that will wake those sleepy adrenals up as your conversion doesn’t appear too bad at all, hopefully this will generate enough T3 to wake the pituitary up from what seems a long hibernation. Hopefully others may chip in with their 2 cents - the more opinions on this the better I think! Hang in there xxx
I’m not sure if so far I’ve been able to give you much help, just thrown a lot of possible ideas around! But we will see 🤞I feel you must surely be on the right track at least x
You’ve given me a lot of guidance, and I’m grateful, otherwise it’d be more months/years of flailing around trying to find a way forward. Yes, I feel better than I did a year ago, so hopefully it will continue.
Unless a diagnose of Addisons or Cushings is diagnosed it can be difficult to access any further help or be prescribed adrenal support, eg HC. ACTH should be tested with cortisol first thing in the morning or before 9am.
Stim showed adrenals to have a good response with the right stimulation but because ACTH is naturally low it would be prudent to assume cortisol is as a consequence. Have you had any pituitary investigation given TSH is also low in relation to your poor thyroid hormone levels?
Aldosterone works with renin (enzyme) to regulate sodium retention and potassium in the kidneys. Again there are primary causes for low levels but also secondary as a result of inadequate thyroid hormone/cortisol. Low aldosterone will allow salt to leak from the kidneys and it is usual to crave salt (or salty foods/crisps). When my aldosterone was low I found I craved salt but it didn’t taste so salty and often made me cough. I was also very thirsty (still am sometimes) and drank too much water. My BP became latent and difficult to control for a few years.
In theory potassium should raise if salt is low (and it might have for a time) but electrolytes become diluted when we continually drink excess water. I was told to stop drinking so much water but failed so was then told to drink a couple of electrolyte drinks a week and this helped. Now my adrenal reserve has ’normalised’ after several years optimising thyroid hormone replacement meds.
I still suffer thirst but previous blood glucose issues reversed as cortisol levels normalised and I ate several small meals a day always containing proteins. If I got hypoglycaemic episodes in-between meals I drank protein powder milkshakes or ate a Pulsin Protein bar. I also supplemented berberine, ALA and several rounds of liposomal zinc . I was very deficient in zinc that is used (amongst many other things) in the optimising of insulin metabolism. If you have long term blood glucose issues you likely have some insulin resistance as well.
Low progesterone would be expected at 60 years old and low testosterone is common (although many supplement it now with a transdermal gel). As oestrogen levels drop LH increases identifying menopause if periods have stopped for over a year. However, these results aren't indicative of someone taking HRT that you say you were on in a previous post?
I’m not sure why creatinine is asterisked. Do you have a kidney function test (GFR)? We can also end up peeing out thyroid hormones making levels even lower if kidney function reduces due to low thyroid hormone levels. My labs showed consistently high levels of protein in my pee but I never had an infection.
I too used to feel hung over every morning and often woke with a headache. I put this down to hormones not being regulated and detoxed during sleep as they should. Did you get an appointment with the London Hormone Clinic?
Edit - reading past posts, I see you were self medicating 10 mg Hydrocortisone first thing and 50mcg Levo at bedtime but was still suffering the highs and lows of fluctuation cortisol levels. Sometimes when we increase metabolism it can increase our weaknesses as well as repairing what we want it to. If would be interesting to see how the meds were being used although 50mcg isn't a large Levo dose. Did you test thyroid hormone levels after six weeks? Were you eating regular meals? Were you able to rest in the afternoons? Were you supplementing anything to help with blood glucose swings?
I haven't medicated HC so can't comment on dose or talk from experience but know it should be taken first thing in the morning and that adaptogens (which I have taken) can be useful in rebalancing cortisol (smoothing levels) by encouraging better HPA axis function. Have you done a saliva stress test to measure cortisol's 24 hour circadian patterns? Why did you stop taking these meds?
Thank you Radd - no pituitary investigation other than some other hormones but menopause can blur the lines on those. I’ve tried to add in a tiny (1/4 conti hrt patch) dose of hrt and initially feel better but dip after a couple of days. I applied the 1/4 patch yesterday and alongside the HC it seems to be ok and I feel quite well today, we’ll see what next few days bring. Yes, my tsh has always been low, my t4 was actually under range with low tsh and low t3 in a medichecks test but my then endo refused to accept that test so I gave up and started self medicating. I’ll get some protein bars to carry around with me, thank you for that tip. My vit c supplement contains zinc so I think I should be ok with that as I supplement daily, should I test zinc? I haven’t approached the LHC, tbh I’m fed up doling out a lot of money to be met with blank faces and spurious diagnoses when even I can see and feel there’s something wrong. I’m doing another thyroid test soon and have a regenerus test but I believe I’d need to stop HC to do the regenerus test? I did a regenerus test about 2/3 years ago and it came back low across all areas plus very low DHEA, once again, endo refused to accept the results. I’m now using 25 levo, 10 HC (split in 2 or 3 doses) and tiny hrt patch.
May I ask how you know your blood sugar dips please? Are you testing, if so how? Your story is quite similar to mine and I’m very interested in the replies you’re getting!
You can do home blood checks with a finger prick monitor (only need a drop of blood). Something like this ..... boots.com/accu-chek-instant...
or if you wanted to check two weeks continuous levels you can apply for a free Freestyle Libre2 14 day continuous sensor that you wear on your arm, connected to an app to view results. ... freestyle.abbott/uk-en/gett...
Hello CornishChick - my last nhs endo who did the SST gave me a glucose monitoring kit when I explained about the dips. You can buy them but I think your GP will give you one for a trial.
Sorry, I missed the first part of your question - the blood sugar dip is very obvious, I can feel it start around 4pm with what feels like more alertness, probs adrenaline, if I don’t eat at 4pm, by 5pm I’m shaking and heart pounding, slightly sweaty and feel sick. It’s not nearly as bad now that I’m using HC but previously it was awful. I tested at 5pm and blood sugar was around 4 or just above. After eating I feel better.
Thank you, my dips are nothing like that, so it may not be sugar. May I ask how HC helped your sugar, I thought it was to increase cortisol? Thank you.
I believe cortisol plays a part in the glucose/insulin feedback system and if cortisol is low it can lead to sugar hypo, so supplementing HC increases the cortisol and smooths out the dips. . I’m sure someone else can explain it more clearly but that’s my understanding, and experience.
t4 is way below optimal, ask doctor for a trial of levothyroxine or similar, when you ask use the word 'optimal' and do some research before you go so you have questions and answers,
Thank you cazlooks - all medics (I’ve consulted 6 now) say my thyroid is healthy. I think my thyroid probably is healthy but there’s a problem with my pituitary, so… I just got some levo online and im now trying to dose and test until I feel better.
Just adding to what some others have said about adrenals and hydrocortisone. Normally, there is a circadian rythm to natural cortisol production. It's important to know that hydrocortisone only stays in the body for a few hours (4-5) with the rest lost. Consequently, taking all hydro in a single dose in the morning is not advised because it won't see you through the whole day. Most people who have to take hydro will split the dose into 2 or 3 smaller doses in a day. Three is closer to the natural rythm, with the last dose normally early evening.
I've been titrating my levo very slowly as really felt unwell when I tried to take what I was prescribed (scary chest pains and felt very out of it) Initially I split the 25mcg into 5 tiny pieces and took one then very gradually built up.
It's taken from August last year to get to 37.5mcg (approx) I also split the dose and are taking 25mcg during the night as I wake a lot.
Then in the afternoon I take the 12.5mcg. I believe I'm very sensitive to levo due to being an untreated hypo for a very long time. It probably sounds exaggerated but I can feel the 12.5mcg working a few hours after I've taken it.
Also I have increased hypoglycemic episodes but am trying to eat more protein and smaller meals as my pre-diabetes blood level has increased.
Hope you eventually find what works for you. I know from reading your posts you've been feeling unwell for some time.
Thank you Hedgeree - I think you’re right, and I remember you mentioning this in a previous post, I also feel the effects of levo after about 4 hours and it’s possible that’s because I’ve not been treated for so long. Thinking back, some of these symptoms were there as long as 5/6 years ago so I’m going to take your advice and go slow. Are you feeling better now? There’s no doubt I need the HC, I’ve tried both levo and metavive without it, and it always ends the same way - BAD. Thanks again.
This will probably sound strange when I say this but I don't feel continually fabulous but certainly feel much improved from where I was last year so I'm feeling positive.
If I'd have listened to the endo nurse she was adamant that I start on 50mcg I think I'd have given up taking levo as the side effects I was experiencing were terrible. Also the endo (different clinic) said via letter to start on 25mcg.
But I listened to my body and followed my instincts (and forum advice! 😊) I also got lactose and mannitol free levo so at least the digestive issues stopped.
Even though I was only taking a tiny amount I felt very clear headed fairly quickly. Once that clarity subsided a few days later I took another tiny piece of levo in the afternoon and titrated up very slowly.
The nausea is a lot less. Still having to lie down in the afternoon or early evening most days but there's definitely been some kind of positive shift in my bodily systems.
It was a challenge trying to juggle levo around meals and other supplements but it was worth it. Now I take it mainly during the night but also a small amount in the afternoon.
I would give it a go and titrate levo very slowly and see how you go.
Really pleased to hear you’ve got some positive results, and yes, I think that’s the way to go for me too. Interesting about the ‘clear headed’ symptom because it goes the other way when I’m on 50 - terribly fogginess, so that’s presumably too high too soon. Thanks Hedgeree, that makes a lot of sense.
I was quite surprised to experience that clarity with only taking such a tiny amount but I did!
I think the hardest part is committing to taking it slowly. As you know when you feel so unwell you just want to feel better and naturally try to rush things.
When I got impatient I tried to increase more quickly but I felt very hypo and unwell then too so I went back to 'low and slow'.
You're introducing a hormone into your body that your system has been lacking for some time so it'll take a while to readjust.
I realise I've got a long way to go as my FT4 levels are still below range but I'm definitely feeling improvements 😊
You know from experience that taking levo at the usual starting dose made you feel very unwell. So it would appear you have nothing to lose by starting very slowly.
Over decades i've found endocrinologists hopeless and incompetent. A new book which every person that's identified as 'hypothyroid' " 'The Underactive thyroid: do it yourself because your doctor won't' by Dr Sarah Myhill. A full list of how to read your results, how to add glandulars if you need them and other info that supports thyroid. A treasure at last.
Dr Myhill recently did a uTube on 'being hypothyroid. From all the posts, it sounds like you're using a scatter gun approach - trying everything. For decades I did that too; now I take 50/75 levothryoxine on alternate days BUT take one capsule of METAVIVE 1 sublingually every morning and one at midday. Makes a Huge difference by adding the glandular.
Hi Windmill6 - thank you, all endos have said it’s not Addisons, what else would I test to find out if it was addisons, and would it affect my thyroid? Apologies but I don’t know what Conns disease is.
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