Hello again everyone. I’d be grateful for advice on next steps in regaining my health, please. My symptoms have definitely improved since diagnosis in Sept 2017, but I am still not fully well – energy levels variable, lots of aches and joint stiffness, etc. I have some good days and think I’m doing okay, and then a run of less good days – on average better than last autumn, but still having a significant negative impact on work and life generally. Based on my latest bloods (see below) I don’t think there’s any point in asking the GP to increase my levo from the 50mcg that I am currently on, so I’m considering what else I should do, and would welcome your collective wisdom!
I have been gluten-free since Oct 2017, and also since then supplementing vits and mins based on the advice on this forum, and making my own kefir to help my gut.
Results as follows:
31 Aug 2017 – pre-diagnosis:
TSH 6.89 (0.27-4.2)
FT4 11.1 (12.0-22.0)
After these started on 25mcg levo.
30 Oct 2017:
TSH 3.58 (0.27-4.2)
FT4 14.3 (12.0-22.0)
Dose increased to 50mcg after these – had to really push GP to increase as her view was that bloods were “normal” as back in range.
13 Jan 2018:
TSH 0.65 (0.27-4.2)
FT4 17.7 (12.0-22.0)
This test was done at 9.45am, fasting, and having missed my levo dose the night before.
So with TSH below 1, I don’t think it’s worth even asking the GP for a dose increase, yet my FT4 is only just above the mid-point of the range, rather than being in the upper part of the range as generally advised on here.
It seems to me the possible next steps are:
1. Source additional thyroid hormone by other routes (more levo? NDT?) to top up the 50mcg I get on prescription. Do I need to get my FT3 tested before going down this route? Would more levo be the right thing to try, or NDT, or something else?
2. Check how my vits and mins are doing. Is it too soon to re-test, given I’ve only been supplementing properly since last October? (Money is tight so need to use it wisely on private tests.)
3. Think about my adrenals. I did a cortisol saliva test as I find mornings crushingly difficult but am wide awake late at night, and the results were:
Waking*3.090 nmol/L (6.00 - 21.00)
12noon4.490 nmol/L (1.50 - 7.60)
4pm 1.850 nmol/L (0.00 - 5.49)
Before bed<1.5 nmol/L (0.00 - 1.99)
The Medichecks comments were: “Your waking salivary cortisol is decreased and is at a level that raises concerns about an underlying disease affecting your cortisol levels, such as Addison's disease. I recommend repeating your salivary cortisol test within the month to assess this further. Cortisol can be quite variable so it's best to confirm things with a second reading.” This got me worried of course! Should I be worried? Is it worth taking something to help my adrenals (I’ve heard of Nutri Adrenal and Adrenavive) or should I be talking to my GP about Addison’s?
4.Think about whether it’s the menopause. That was the GP’s view when she didn’t want to increase my levo, but my test results are inconclusive on that with FSH being very low (below range). Readers of my other posts may remember I was debating about whether to go on HRT or not; I’m still undecided on that and think that at the very least I need to ask to have my FSH and LH bloods repeated before going down that route.
5.Think about diet. I know there are stricter exclusion diets I could try. I’m not sure that at the moment I have the willpower for that though – that might sound a bit feeble but it’s how it feels! (I think there’s some research that suggests our willpower is finite, so if we’re using a lot in certain tasks (eg getting through the day!) we have less left for others (eg restricting diet more).)
(By the way, there's only one GP practice in town, so no scope to go elsewhere.)
Anyway, sorry for the length of this! Would really appreciate any advice, especially on 1, 2 and 3 above. Thank you!
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TSH 0.65 is low-normal and FT4 17.7 is just over halfway through range. Although you appear to be adequately dosed symptoms can lag behind good biochemistry by several months.
If you have adrenal insufficiency (Addison's disease) that will be why you are feeling unwell when you appear to be adequately dosed on Levothyroxine. If you can't afford to retest show the Medichecks results to your GP and ask GP to check serum cortisol. If it is low you will be referred to endocrinology for a short synacthen test. If Addison's is confirmed you will need steroid replacement.
Thank you, Clutter. I don't know if it's a typo in your reply, but at 17.7 my T4 is just over midway in the range, rather than being over range. I thought I had read that ideally it would be 19 or above, but do you think it is okay at 17.7? If so, I guess I should perhaps wait a couple of months to see if symptoms continue to improve before investigating the adrenal issues. But if there's no further improvement (or not enough), I'll ask the GP about checking serum cortisol as you suggest.
I meant to write 'just over halfway through range'. I've edited my reply above. Halfway is okay. 19-20 is better. You could ask your GP about increasing dose and if s/he won't agree to 25mcg increase negotiate 75mcg/100mcg alternate days. You could discuss the cortisol results and Medichecks doctor's comments at the same time.
Thanks. Not holding out much hope of the GP agreeing to an increase as she was very unwilling last time - and there's only one GP practice in town - but perhaps I can see if a different doctor there might be more helpful! Worth a try I guess.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Thanks for your reply SlowDragon. Sorry, should have said that I have Hashi's. I have been gluten free since October. My vitamins were tested in August when the first batch of bloods were done, and as a result, and based on advice here, I've been supplementing iron, D3 plus co-factors, folic acid, selenium and B complex, and also Vit C with the iron and with my levo to help absorption. That's since October - would it be time to retest vitamins now or is it too soon to have made a difference?
My second and third lot of thyroid bloods were done as you advise, in the morning, fasting, and having skipped a dose of levo.
I think its probably time to go private to get my T3 tested as the GP won't do that.
Yes, I would definitely follow up on the low cortisol and get it checked out. Do you have a kidney function test or one with potassium and sodium levels? Problems with adrenals like addisons will often present with High potassium and low sodium.
Your cortisol regulates the amount of glucose in your blood so when you haven't got enough cortisol your blood sugar levels can drop further at night and once they get to low, your body will respond by producing adrenaline which will obviously keep you awake. You could get a blood sugar testing kit that diabetics use to monitor their blood sugars quite cheaply from a pharmacy and see if this is what is happening?
I can't say whether this is the problem obviously as bodies are so complicated but I did have extremely low cortisol once and clear indication of addisons in my potassium/sodium levels and also had brown pigmentation occurring on my forehead and other places. Also, I became very irritable and lost my temper badly (never did before) and if i got too stressed, I would pass out for hours or take days to recover - an over heated argument with someone would be cut after a few minutes and I would crawl to bed and pass out for hours. I stupidly went on a rollercoaster, which I have always loved, and felt so intensely sick afterwards I managed to get to a bench in the theme park and slept!! Does any of this sound recognisable to you?
Endo said I had suspected addisons and was going for further tests but went GF literally that week and my health improved so never did go. Took a while to feel right again and took three years for the brown marks to fade - now I have slightly high cortisol at night - keeping me awake - typical lmao although glad adrenals are clearly working again lol, I'm just keeping fingers crossed it won't come back as felt terrible
Thanks for your reply, Saggyuk. Really interesting to hear your experience with low cortisol, and I'm glad you are so much better now! My symptoms are not as bad as yours: the main one is feeling so awful in the mornings as though getting out of bed is almost physically impossible - I've never been a morning person but this is much worse than that. I can be very irritable but mostly keep it inside my head, so far at least! No brown patches yet.
Will look through all my previous results to see if there's anything for potassium and sodium.
The blood sugar connection is interesting as I often wake up in the middle of the night and then struggle to sleep again, so that could explain it.
Can I ask, how long after going GF did you find your cortisol-related symptoms improved? Did you make any other dietary changes? I've been GF for about four months and my gut is happier for sure, but perhaps there are further improvements to come from that. I've read so much about how the gut affects the health of the rest of our body and brain so it would be great if continuing to heal my gut could help with adrenal issues too.
To be honest I was in such a mess with so many problems when first went gluten free, it's hard to say how long exactly for each problem. I had autoimmune sleep disorder and lots of other things diagnosed, crazy blood sugar levels and was basically in bed the majority of time at this point and too ill to continue arguing with anyone or even going out. I took it very easy the next few months. I had some symptoms clear up quite fast - like my historic digestive symptoms and my blisters stopped itching. I did feel calmer and less sleepy after a couple of months and stopped losing my temper slowly but surely but then had issues with being over medicated as could process thyroid hormones better (which wasn't clear at first and could have caused similar emotional/stress symptoms to low adrenals). Also had massive nutritional deficiencies that were unresolvable before this time which also would have taken a while to settle. I would say it most definitely was better by six months specific to the adrenal issues as the brown patches stopped spreading by then - didn't fade for quite some time though. Some things took a year or so - blisters didn't clear for over a year although no longer itchy for example. So can take a while.
I didn't make any other dietry changes apart from those that were instinctual - such as I was starving lol. Never had an appetite and was first time I'd experienced hunger - ate a lot lol!
My cortisol levels were very low throughout the day whereas yours do seem to be getting in range during the day so maybe just not yet as bad a level as mine was.
If you look up adrenal fatigue, there are lots of sites with advice to try and help with this. There's different phases though with different things you need to do although I imagine your's would be at crashing point or final point. Doing what you can for stable blood sugars might also help - including eating regularly and enough. What you need to do will depend on what you're habits/lifestyle is at the mo and what your cortisol patterns are so more useful for you to read up.
It might be worth trying to get a quick test as although mine seemed to reverse, unless you show any improvements soon you would want to know maybe?
Thank you for the links - I'll get reading! And as you say, it's perhaps worth seeing the doctor and having it tested in case things don't improve with diet etc. It does seem that it's only in the morning that cortisol is particularly low for me, so hopefully I'm catching this early. Really useful to have heard your story; thanks for sharing it.
Thanks for your suggestions, Jollypolly. How did you find out that the problem was estrogen dominance? Is there a way to test for that? I have PCOS as well so I know I have a bunch of related hormonal problems! I am now doing much better than when that post above was written, though not out of the woods yet, so I'm sure there's more I've yet to find out.
PCOS is Polycystic Ovarian Syndrome. So basically, my female hormones have been playing up since my teens! Anyway, thanks for the information, and good luck with your own journey.
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