Are you able to take ANY Levothyroxine with Low cortisol while the low cortisol reason is still being investigated?
I may just be impatient (I am), but I want to feel better and waiting for the Endo referral will be stressful as I’m sure appts may take weeks and weeks…
I was wondering if it’s some to take some Levo dose or none at all?
I wanted to clarify that my 8am cortisol tested low twice, the last result being 140 (177-567).
The reason why I wasn’t given Levo was that they were worried it may cause/accelerate and adrenal crisis.
I was considering making a further appointment asking them to review this and maybe give me 50mcg of Levo to start and see got it goes, but didn’t know if it was ok.
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OudMood
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Hello, anything to do with treatment of thyroid must be done slowly, if you get impatient and start going ahead without results or investigation then it it does more harm than good , I would wait
6am, 4 to 5pm, around bedtime say 11pm.The gaps for empty stomach are not set in stone. They are advisory to maximise absorption. However it is better to compromise on absorption than not get any increase at all
Fair enough. Personally I wouldn't cope with that. I only see one 6 o'clock per day and I am very much tucked up in bed at 11pm. (I take my pill when I wake in the night for a pee, about 2am ish).
I have always had to split mine so initially 6am and bedtime. when liothyronine T3 was added to levo it was split to 3 doses per day so I split my levo into 3 doses as well and took at the same time. Now I am back dosing 6am and bedtime.
Have you had your T3 tested. You may be a poor converter. I had this exact same issue. I’d been on Levothyroxine for over a decade. I had many issues throughout that period. I found out by going private eventually that I’m a poor converter of Levothyroxine T4 to active T3. I was only converting 8% to T3. My cortisol blood results was under range. I had a Synacthen test which I passed. Meaning no adrenal issues. I was put on a T3 Liothyronine trial along with my normal dose of Levothyroxine. It has been a huge success. My cortisol shot up from 68(155-650) to 450 within a few weeks. All of a sudden I felt energetic snd well after being in a real bad way. I also did the DIO2 gene test which was positive, once again proving I was converting very poorly. I’d suggest you try snd get your T3 and T4 and TSH bloods done at the same time snd check how well you are converting to the most important hormone T3. T3 boosts just about everything in your body to make you feel well. I do have to split my Levothyroxine dose though snd take half twice a day. I’m on liquid Levothyroxine now too.
Honestly I’m hoping I don’t have any adrenal issues 😬
I’m not on Levo at the moment and the GP doesn’t feel comfortable prescribing it heat until I’ve done the SST and been seen the the Endo to rule out anything adrenal.
They’ve also prescribed a scan of my thyroid to get a better picture of what’s happening or what’s been happening as I think I have Hashi. (TPO we’re normal but TG was high).
My FT4, FT3 are still in range by themselves
My latest results were
TSH: 5.62 (0.27-4.2) 136%
FT4 15.8. (12-22) 38%
FT3 4.73 (3.1 - 6.8) 44%
Not sure if the percentages are correct 🤭
My cortisol was low but not that bad compared to you… it was 140 (166-507)
It’s good you’ll be having a SST soon. That’ll be the deciding factor if it’s adrenals. Looking at your TSH, T4 and T3 results. Your TSH is much too high. The NHS set the range too wide. Any TSH over 2.5 is hypothyroidism. I was informed this by my private only Endocrinologist in Oxford. You need to be on Thyroid medication but unfortunately the NHS normally won’t treat you until your TSH is 10 or above. In Germany they treat when your TSH gets to 3. It’s all about keeping costs down by our NHS. I didn’t get thyroid medication by my GP until my TSH got to 36! It’s all a disgrace.
I do hope you pass your synacthen test as nobody want Addison’s disease. If you pass it then I’d focus on trying to get your Thyroid sorted with Levothyroxine first. Then check after 3 months to see also how your T3 is to see if you are converting from T4 Levothyroxine to active T3 ok. If your T3 still remains low then you’ll probably benefit from also taking Liothyronine T3 medication.
It does look like you have a thyroid issue from your results and will need to level it with thyroid medications.
My cortisol was fixed by taking T3 as I’m a very poor converter.
You could also do the DIO2 gene test in the mean time through Regenerus Laboratories to see if you have this faulty gene. If positive then you definitely have an issue converting T4 to T3.
I know you told us a couple of days ago that your new GP has referred you for endocrine to advise prior to treatment. I appreciate you asking the forum for thoughts on low cortisol and levo treatment to discuss with your new endo and agree it’s good to be ready for a full discussion .
I just hope you are not planning to start self treating and possibly upsetting the new understanding and helpful GP.
Of course comments from members may help you to persuade her to start treatment without endo input.
Thank you for your comment!No, although I really am impatient, I was not planning to.
I was asking to see if I could get some “talking points” to see if she was willing to try a tiny 50mcg dose..
Unfortunately she very politely explained today that she’s looking out for me and is concerned that if the low cortisol is a symptom of the adrenals struggling that may make me very unwell.
Which I understood.
She also has ordered a scan of my thyroid despite not finding any lump or goitre which I am very grateful for as I think it will make my Hashi suspicion easier to diagnose.
She said she knows it will be very helpful for the Endo and she’s rather not wait as if the Endo orders it I’d have to wait even longer for treatment (first see endo, do tests prescribed by endo, see endo again, etc)
I think they’ll leave to the Endo to fully diagnose me and hopefully start treatment.
I’m just hoping it’s not a 6 month wait for the consultation 😵💫🥴🤞🤞🤞
My 19yr old daughter was originally diagnosed as hypothyroid and started on levo, her TSH and fT4results were not improving so was put on a higher dose around 4wks later. Within 2-3weeks of this she was incredibly unwell, vomiting, listless etc and bed bound. She was in fact having an adrenal crisis but that wasn't recognised until she was admitted via A&E and further tests carried out (SST etc). Once her newly diagnosed Addison's was being treated appropriately with hydrocortisone and fludrocortisone her thyroid returned to normal function and she has not needed levothyroxine since started on the Addison's disease steroids.We were informed that the levothyroxine had likely increased metabolism and the clearance of the small amount of natural cortisol still being produced by her adrenals. If she had not been quickly attended to by A&E and treated appropriately there my have been a very different ending to this story.
It is very possible she may eventually become hypothyroid as Addison's is an autoimmune condition and you can eventually have other autoimmune conditions alongside this plus our family has a history of thyroid disease, but she has been an Addisonian for almost 9yrs now and thyroid function has been good.
Thank you for sharing this. I really appreciate it.I think my medical team is rightfully worried of this happening to me… hence all of the tests first…
I’m happy your daughter is feeling much more better by the sounds of it…
Out of curiosity, I have a few questions:
- How elevated your daughters TSH was?
- Did she have all of the hypothyroid symptoms?
- What Levo dose was she on when she had the crisis?
- Is the GP monitoring her thyroid regularly, say once a year? Or are you via private tests? Or did they just leave it at that now?
Hi it was more than 8yrs ago when she was originally diagnosed as hypothyroid, also she visited the GP on her own so I don't know what her original TSH was. I think she was up to a dose of 125mg when she started to go into crisis.Initially symptoms were tiredness - exhaustion by end of day, muscle and joint pains and brain fog and sometimes chest pain, she was initially checked for anaemia. When put on levo she was complaining more and shortly after the first increase in levo she was increasingly very dizzy on rising from sitting, more exhausted, complaining of abdominal pains, vomiting but also unable to really eat anything, she was bed bound for around 4days before a GP appointment was possible. When seen, her blood pressure was rock bottom but heart rate sky high and sent immediately to A&E and seen within 5mins of arrival and on drips within 10mins. If she had not been admitted she would have gone into full crisis.
The NICE guidelines does advise health workers to be vigilant for the possibility of Addisons if folk become unwell on levothyroxine (can't remember the exact wording). Once we knew she had Addison's it was very obvious she had other Addison' symptoms such as hyperpigmentation of the skin, plus most of her toe nails were part brown in colour, all symptoms resolved once on hydrocortisone and fludrocortisone but it did take a few months. Her levothyroxine was actually stopped on the day she was diagnosed with Addisons.
Initially she was seen by a hospital endocrinologist every 6 months but that was reduced to once a year and during the pandemic it has been reduced again. Her thyroid function has likely only been tested circa 3 times in 8yrs but always normal (so far). On hydro and fludro she lives a full life but over the years has become more aware of how to avoid a crisis if she is affected by any other illness, mishap etc, by double dozing or using a hydro injection when necessary.
At 19yrs old it was psychologically difficult for her to change from a 'normal' sporty teenager to one who had to be more mindful of how to self manage health via daily steroids, but I'm hugely proud of the confident independent young woman she has become.
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