Hello wise people. I’m hoping someone can point in the right direction. I have a new Endo who wants to treat me on the basis of TSH only but who has also picked up I have low cortisol.
I’ll try to give all the relevant info upfront so apologies for the length of the post.
Under active thyroid (very high TPO antibodies) diagnosed 2013 and started on T4 only treatment. I’ve also had consistently low ferritin.
2019 - increased levo gradually from 50 to 100mcg, GP referred me to endocrinologist for help with fatigue/ possible T3 trial. Had an iron transfusion. On 125mcg Levo and T3 blood tests consistently at or just below bottom of reference range (I recall 2.7, not sure of units)
2021 - had cancer and NED following surgery. No chemo.
2021 - previous Endo left. New endo agreed to a T3 trial but refused to check or treat low ferritin. Started 20mcg liothyronine once per day in addition to existing 125mcg levo. I noticed new intolerance to caffeine and would feel wired for several hours after a dose. Eventually began experiencing palpitations. Unable to get an appointment with my consultant and a couple of scary episodes of palpitations which took several hours to resolve so took myself off the T3 around June 22. Eventually saw consultant who wasn’t willing to support splitting my T3 dose.
2023 - Follow up showed vitamin d levels on the low side so started but D supplement. Also had a massive allergic reaction to hydroxycholoquine (that’s another story) and a difficult 4 months of high dose prednisolone (70mg) and a wean (rapid month to 10mg, then 1mg per week after that) and messed up my thyroid meds by taking them too close to vit d. So TSH shot up and T4 came down.
2024 - 2nd endo retired. Started HRT. I noticed my T3/T4 levels consistently higher than before taking T3. t3 is now consistently around 3.5/4.
3rd endo suggested I restart t3 but 5mcg twice a day and also decreasing t4 to 100mcg. He’s been vocal about thinking only TSH is relevant to determining treatment, that my T3/t4 levels are irrelevant and I am over medicated . My TSH had been suppressed below 0.1 for years, and he’s clear that he’ll want to reduce t4 to get it up to 0.3. I’ve been to 0.3 occasionally before and was on the floor with symptoms so concerned about this.
But he’s also picked up low cortisol. I stopped HRT to have short Syncathen test, but for various reasons I can’t have it. I’m on the floor with fatigue and aches. So endo is going to just test morning pituitary hormones but if it doesn’t look like hypo pituitary he doesn’t propose to treat the low cortisol at all. Latest blood tests below.
I’m trying to find some iron tablets I can tolerate. Taking 2000iu vit D and currently 125mcg levo. About to switch to 100mcg t4 and 5mcg bd t3.
Should be asking for a different endo who doesn’t treat by TSH only? Feel like I might be on the road to nowhere with this guy. However he does seem to make sense on other points and generally my frees are higher than they were, so maybe he’s right that I’m over medicated?!
Should I start hydrocortisone or ask for other cortisol tests? Endo has refused to do a blood or saliva cortisol screen. I think I do have significant low cortisol symptoms. Often go cold shaky, low blood sugar, achy. Am consistently floored with fatigue and flank pain. Upset stomach and headache when stressed. Concerned even if I don’t have hypo pituitary perhaps I have adrenal insufficiency that needs treatment/ a slower wean.
Thanks for listening and grateful for any advice.
TSH 0.04 (0.35 - 4.94)
FT4 15.1 (9-19.1)
FT3 4.1 (2.4-6)
Cortisol 237
Ferritin 20 (23-300)
B12 325 (187-883)
Folate 4.3 (3.1-20.5)
25 OH Vit D 52 (50-120)
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Snowday
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I should add those blood test results were from while I was still on HRT. Since coming off it 6 weeks ago my period hasn’t returned. I’ve also become quite phobic about doctors and NHS after a few bad experiences and don’t trust them at all. I might just need to be told to go with it and this new doctor!
Have you tried Spatone Iron Sachets? Sounds like your body wants to go down a much more natural route than the over medication often prescribed by pharmaceutical companies x
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Low vitamin levels
B12 325 (187-883)
Folate 4.3 (3.1-20.5)
These are too low
What vitamin supplements are you taking for B12 and folate
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
Or buy a test online, about £20
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months.
If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks Slow Dragon. I’ve been tested for coeliac several times and always negative however I do feel better on a gluten free diet. I just don’t stick to it as gave multiple food allergies and very restricted diet already. But you’re right I should try it again.
I don’t understand why the drs don’t give this advice!!
Because they don't know. They don't get any sort of training in nutrition. Never ever take nutritional advice from a doctor, they have no knowledge but a lot of weird ideas!
terebol - I've linked you in here just so that you can read further on your vitamins and minerals in these very detailed and research links from SlowDragon throughout this post .
2021 - previous Endo left. New endo agreed to a T3 trial but refused to check or treat low ferritin. Started 20mcg liothyronine once per day in addition to existing 125mcg levo.
Far too high a dose to have started on
Especially with such low vitamin levels
Ideally vitamin levels should be optimal BEFORE adding T3
On here, many members have found starting on T3 best to start with max of 5mcg per day…..either as single dose or as 2.5mcg twice day
Then only increasing SLOWLY over several weeks/months
It’s essential to maintain GOOD vitamin levels for good conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
I’ll have a look back over my tests results. In the past my ferritin falls and then begins to affect haemoglobin. I’m very much a carnivore but ferritin always seems to be an issue. I had hoped since having cancer and successful surgery this might improve it. I can tolerate ferrous fumarate tablet and am allergic to the liquid forms. I have a prescription for ferrous glyco-something waiting for me to collect - fingers crossed I get in better with that one.
Yes these tests were 9am and before taking levo. The trouble is my endo is very keen to reduce t4, I think I’ll need to try and change consultants (tricky) to get a different approach to dosing
This is my concern. But I don’t know how to change! I asked the endo secretary who said they would have to discharge me back to primary care and my gp would need to re-refer me elsewhere. So goodness knows how long that would take or if I’d even get a better doc. I’m concerned about going from the frying pan to the fire.
Suppressed Tsh for 30+ years. PTC diagnosis TT right and left neck dissection. They got it all wrong! Long journey, however I no longer can tolerate Synthetic T4 (symptoms just as you described) frozen shoulders, back pain, cramping and severe depression. I started reading "Stop the thyroid madness" revised edition. My cortisol problem comes from over suppression for too long and now I have a hypothalamus, Pituitary dysfunction. I have been on Niva thyroid *Ndt) fairly new and it's been difficult to reach an optimal dose. I am reading Paul Robinson's "The CT3M handbook" which I have applied and found helpful. I'm now understanding that all that matters is my ft3. About to move into a t3 only regimen with Paul Robinson's "Recovering with t3". Maybe you could find and read about his journey and gain insight as I have. I was having an issue with vasoconstriction(coming from the hypothalamus dysfunction) and found L arginine and L citrulline aid/support both hypothalamus and Pituitary which has stopped the vasoconstriction. Lol ...I know it's a lot to take in, but the more you can learn outside of what the doctors are telling you, the better off you'll be. Good luck and Happy Holidays!
Snowday If you have been off the HRT for 6 weeks, get yourself an early morning (8-9am) cortisol blood test done. Symptoms that you describe could be adrenal insufficiency, and flank pain is a key phrase that should get the attention of any endo if low cortisol is a possibility. Remember to not take any steroid-based medication prior to the test that day, and ideally not the afternoon/evening of the day before if safe to do so.
What is the reason for not having a SST? Unless you are sensitive to ACTH (it can happen) or anything else in the injection (again, it can happen), it's hard to imagine why a SST can not be done. If you do have a low early morning cortisol result, the next steps would normally be an ACTH blood test and the SST (many NHS places try to skip the ACTH blood test, but it is really useful at that stage).
What are the specific tests that the endo is proposing instead of the SST?
Hi, yes it’s a bit of a nightmare really. The endo says my 9am cortisol is low (result above) so referred me for syncathen test. But when I got there the discovered the hospital doesn’t have any adrenaline without the preservative I’m allergic to. I’m pretty allergic and still on the mend from a serious drug reaction, they felt the risk was too great so decided not to test. Instead the endo will repeat the 9am cortisol and test acth and “other pituitary hormones” (don’t know what he’s ordered yet - waiting for the forms to arrive). However he’s said it’s unlikely to show a problem and without a positive Syncathen test he won’t be treating the low cortisol .
This is where I’m a bit unclear - if I had normal acth but low cortisol shouldn’t that be treated anyway? I’m having a lot of anxiety about this because I feel so unwell. I’m literally worried about dying from adrenal insufficiency most nights, my symptoms fit - but then I suppose I also have all the nutritional deficiencies too which could explain the symptoms.
Snowday Not the first person that I have heard of with an allergy to the preservative used in the synthetic ACTH injection used in the SST. That does make things trickier. However, not having a SST should make no difference to treating low cortisol - it needs treating whatever the result of the SST. All the SST does is to indicate whether the adrenal glands themselves produce an adequate cortisol response when triggered by ACTH. In combination with checking the body's natural ACTH level (which should normally be done immediately before the SST), the result of the SST suggests whether adrenal insufficiency is primary (Addison's) or non-primary (pituitary, hypothalamus, steroids, opiates etc). In either case, treatment is required if the early morning cortisol test was low. Your cortisol level of 237, if drawn 8-9am, is low but not emergency-level low. If it was drawn 8-9am, I would expect you to be put on hydrocortisone. If your endo doesn't want to put you on HC (or equivalent), ask for his/her written justification for that decision and ask for a second opinion.
also - where are ‘flanks’? My pain is predominantly hips, lower back, outside of thighs. I think perhaps flanks are actually further up mid back near kidneys.
The adrenals themselves sit just above the kidneys.
But, also remember that cortisol is anti-inflammatory and affects the whole body, so if cortisol is low, aches and pains can appear literally anywhere. Amongst other places, I have had low-cortisol aches & pains in upper arms, deep in my scrotum (possibly TMI), my hips, my ankles and toes. I have heard others mention those same sites and others.
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Everything low except my weight!
T3 taken away, looking for a new source please :)
Cortisol Test
recent labs and tirosint issues
