I’ve been treated for hypothyroidism for 20 years, currently on 100/125 Levothyroxine.
I’ve always remained symptomatic GP have fobbed me off..the usual CFS you’re depressed..
I’ve had to fight to see and endocrinologist NHS who was very uninterested..
However I had some blood test this am and the hospital have phoned and booked me in for an Addison's test as my cortisol is low.. can anyone give me some insight on this? I’m upset and angry that the GPS have not listened to me for all these years..my QOL is very low as I struggle..
I eat well and take supplements..
July 23
TSH 0.796. ( 0.27-4.2 )
Free t3 3.9 ( 3.1 - 6.8)
Free T 21.1. (12-22)
Feb 24
TSH 2.64. (0.27-4.2)
Free t3 3.8 (3.1-6.8)
Free t 17.7. (12-22)
many thanks
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JadeFox
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Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you did this test
Assuming yes…….shows not on high enough dose levothyroxine as Ft4 is too low
JadeFox As slowdragon says, you’re not optimally treated and it’s looking like you’re not converting the inactive FT4 to the active FT3. This could be due to less than optimal vitamins but it could also be related to your low cortisol.
thank you.. any amount of stress wipes me out..seeing the nhs endo last week put me in bed for the afternoon..
..my story is really awful and I’ve not wanted to continue living,,that’s the point that I had reached to even get that referral..then my GP sent me a text last September saying he couldn't do anything to help me..so here’s my medichecks results for September so I’ve been doing this by myself..
September 23
TSH 0.234 (0.27 - 4.2)
T3 4.1 (3.1-6.8)
T4 20.1 (12-22)
My sleep was awful and I was getting really hot so I cut back on Levothyroxine so I dropped my meds to 100 and after the feb test started on 125/100 but I was hopeful as the T3 had improved I made lots of little changes..
Asked the pharmacist if I could find out the brands they’d given me over the past year..that was a no
I booked to see a private eno but his appointment was £440 which I cant afford so I cancelled...I was devasted..phoned GP surgery and told nothing they could do to get my appointment sooner as it had been moved to the end of June that would have been 11 months after referral.
I sent a letter of formal complaint..saw my GP spoke to him about the change in brands of meds every 2 months I now on ELTROXIN it’s been 2.5 weeks..
Last week I finally saw the endocrinologist I requested to trial T3 she would except the medichecks results which show poor conversion to t3 said my levels were fine..
I’m 75kg so I’m in the over weight bracket I was 84kg 2018 and have worked hard to shed a few pounds..
the past few years I’ve been getting inflammation in my lower legs especially when I have a flare up.. I use caster oil and massage them..
I had a full test from medichecks last July which showed very low ferritin so was on 3 months of supplements from GP
I take zinc, selenium, magnesium, Vit.D fish oil. VitC. Bcomplex. Black seed oil. Turmeric..Im careful with timing of taking meds etc.
I go for long bike rides as it helps lift my spirits..
at my last GP appointment I did say that I was going to send a letter of complaint to NHS England and I still wasn’t happy with the lack of treatment and the negative letter to the endocrinologist..
He stands by it not being my thyroid and offered me anti depressants and mentioned CFS but no other tests..
My resting HB is 48-53..
There is more to this story one GP told me to go to the library..another that my low HB meant I was very fit..and prescribed melatonin to help with my sleep..( it didn’t help)
So no actual figure for your serum cortisol blood test was provided?
You’re clearly in a bad way, which is sadly relatable.
Obviously you need to see what happens with regards to your adrenals first - that’s the priority here - but I’m just wondering if there’s other things which might help.
Obviously you’re concerned about your relatively poor FT3 result, which might indicate poor conversion. Mixed levothyroxine brands could also be the problem here.
Before considering sourcing T3, there’s a strong correlation between sub-optimal conversion and poor vitamin and mineral levels, as slowdragon has mentioned. Do you have recent results for vits D & B12, ferritin and folate? As you’re no doubt aware, ‘normal’ and ‘within range’ are often unhelpful interpretations for hypos/the chronically ill.
Another angle to pursue could be HRT but I’m making a huge assumption here about your age! Approximately how old are you?
Your experiences with GP and endo are depressingly familiar, sadly. This stood out:
He stands by it not being my thyroid and offered me anti depressants and mentioned CFS but no other tests..
This really gets my juices going! A diagnosis of CFS/ME is not something which should be so casually assigned to anyone rather, as you allude to, it should be something which bubbles to the surface after exhausting numerous other possibilities. A diagnosis by exclusion. But it rarely is (in my experience anyway). It’s becoming an all-too-convenient way of silencing patients. I’ve been variously told that I’m either suffering from “really bad menopause” (whatever that means) or “it’s CFS”. And that perhaps it’s time I “considered CBT to come to terms with, y’know, your lack of diagnosis.”
Awareness of the havoc a poorly treated thyroid can wreak on our bodies is shockingly poorly understood.
The disappointing attitude of your GP (I’m being generous) would suggest to me that it’s time to seek out a different one, either at your surgery or elsewhere. Obviously after the cortisol issue has been addressed.
This might sound ridiculous right now, but, the fact that your apparently low cortisol is being taken seriously should be viewed as a step in the right direction.
There’s quite a lot of discussions on the forum about adrenal insufficiency (and it’s far less serious manifestation, adrenal fatigue) which you can find by using the search function 👆🏼.
the 1st mediChecks showed I have Hashimoto’s disease. And very low ferritin .it was 25.9 (30-650) folate 45.4 (8.83~60.8) Vit D 94 (50-250)
Last ferritin test last September 33 ( 10-300)
B12 was high out of range can’t find the numbers
I know a gluten free diet works for many but I’ve been so overwhelmed that it’s just been too much ..and I’ve given up alcohol as I’ve got no tolerance I only drank it to be sociable and I’d only have 1
What HRT are you on? Is it oral or transdermal (or a mix of both)? I ask because there’s some research which suggests that oral oestrogen can falsely elevate serum (blood) cortisol tests. Also, HRT can lead some women to need more thyroid replacement than they otherwise would.
Your ferritin is dire and extremely similar to mine. It is probably also contributing to your symptoms.
In keeping with many on the forum, I’ve been taking Three Arrows Simply Heme from the States, it’s effective and extremely gentle. It can also be taken with food. I’m currently not taking it because I’ve been trying to complete a home iron panel, but my first attempt of three weeks ago failed (sample clotted) so I’ve been sent a replacement. But I’ve had a horrible chest infection/bronchial thing since then so I’m waiting to improve before trying again. I have a feeling my levels have slipped.
Re the elevated B12: presumably you’ve been supplementing? My levels are also above range, which doesn’t concern me.
I haven’t drunk in years. I have zero tolerance and often say that I wake up feeling like I’ve been on the sauce anyway, so why would I make matters worse?
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
BEFORE booking any private consultation
Essential to get vitamin levels tested and improved to optimal levels
If your hypothyroidism is autoimmune get coeliac blood test BEFORE Trying gluten free diet
Majority of endocrinologists are diabetic specialists and useless for thyroid
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
My T3 had never been checked nor my cortisol. I struggled on levothyroxine only for years
After blood test in hospital my t3 was very low 3.9 ( range 3.7 -6.0). My cortisol was also very low 150 (155-650). I too was given a synacthen test to check adrenals. I passed the synacthen test. So adrenals ok. Much later I decided to go private. I was prescribed T3 medication alongside T4 levo. Within days I suddenly had strength and energy. I felt great. The opposite to what I had been feeling for a very long time. My cortisol shot up from 150 to 450 within 6 weeks a blood test revealed. My gp was amazed. I’ve been on T3 combined with T4 meds now for 5years or so. My cortisol is checked at 9am blood draws every 3 months and it’s remained good. However, my last test was very low again. I had another cortisol test this week and I’m waiting for that result and my gp has booked an MRI which I’m waiting for as a precautionary measure. So not sure why it’s gone very low? But T3 had ignited my cortisol for sure. So get your t3 measured also and request a t3 trial if it’s low.
Hi McPammy, could you let me know what you’re getting scanned? (Your MRI that’s booked) as I’ve had two years of low cortisol now and have passed the ACTH test. So not sure what’s next….
I passed the synacthen test also but my cortisol remained low on further blood tests. I was prescribed T3 medication privately with levothyroxine. I’m a very poor converter of t4 to t3. I didn’t know how much my cortisol would benefit from the t3 medication. It was like a miracle. I’d get your T3 tested next along with TSH and t4. Low t3 can equal low cortisol.
I’ve just this minute had my 9am cortisol bloods back via patients access. It’s 270 (150- 450). That’s an improvement on last weeks test of 160. So I’m not panicking anymore. It might have been a lab error.
I’m booked for an MRI on my kidneys area as the adrenals sit on top on the kidneys. I still have pain in that area. It might not be adrenals. It could be kidneys in my case. It might be nothing at all. But the pain is concerning me. I hope it’s nothing.
Anyways check your T3 next. Glad you passed the synacthen test. Do you feel good after it. I felt like I was an athlete for a day. lol.
Thank you for replying, I actually haven’t had my T3 tested for a quite a while, so will get it done. If that comes back ok. Then I guess I will have to do some scans too.
That’s good news to hear that your cortisol test came back better this time! And good luck for the scan 🙂
& yes I do remember feeling much more awake after my SST test 😁
13 years ago I did my own research on symptoms that were new to me, and consequently went to the GP asking for a cortisol test, initially poo-pood as to why I would want this done, anyway it proved my cortisol WAS low and I was referred to Hosp Endo, his diagnosis was a mild ACTH deficiency but not really warranting replacement. Had many synacthen tests which they say are ok level, but all my symptoms I personally would say are consistant with adrenal fatigue and still persist, but hey yes I was told I have CFS, offered anti depressants and now I feel endo's are not interested in how I feel, plus stuck with the CFS diagnosis that one Doctor made. I dont have a thyroid. Its all hard work. Good luck with your tests.
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