I always feel sleepy during the daytime and was diagnosed with a shrunken pituitary gland which result in a low ft4 and cortisol, my vit D level was also low. I was immediately on Euthroyxine which was gradually increase to 50mcg and was taking 5000iu of vit D daily. For cortisol, my endo has Synacthen 0.25mg/ml injection for once every 2 months.
All my reading ft4, cortisol and vit D are normal now but I still have the excessive sleepiness What could be the problem now?
Below is the current reading with the numbers in bracket showing the normal range:
You need to test FT3 along with TSH and FT4. Low FT3 can cause symptoms even when FT4 is at a good level. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Also test Ferritin, B12 and Folate. Low Ferritin in particular causes fatigue.
Are you still taking Vit D? Once you've reached the recommended level you don't stop taking it, you start taking a maintenance dose. The Vit D Society and Grassroots Health both recommend a level of 100-150nmol (or 40-60 ng/ml).
Your results are classed as normal because they are within their ranges but that doesn't mean that they are at optimal levels.
As said above, the aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. Your TSH is too high and your FT4 and FT3 are both very low in range. You are undermedicated and would benefit from an increase in your dose of Levo, the fact that you are sleepy in the daytime is a symptom of being on too low a dose of Levo with low thyroid hormone levels (FT4 and FT3).
Vit D is at a good level. You need to test B12, Folate and Ferritin.
I have no experience of cortisol injections or how to interpret tests when on injections but your cortisol level is not normal it is over range but I suppose that could be because you may have recently had an injection.
I can give you some information that originated here in the UK, whether your endo will accept that I don't know (your profile says that you are in Malaysia).
TSH should always be below 2, much lower if necessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Suppressed TSH may be nececessary to achieve a good level of FT3
T3 is the active hormone that every cell in our bodies need, so the FT3 test is the most important and a good level of FT3 is necessary to achieve wellness.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. With your FT3 range of 3.5-6 then you may be looking at a level around 5.
You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article by emailing ThyroidUK at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You may need to increase slowly as SlowDragon has said, but the end result is the same however it is achieved, you need the correct levels to make you well, not just "normal" which only means somewhere within the reference range, you need optimal levels for you.
Thanks a lot for the details info, yes I am in Malaysia hope that my endo who did his medicine in Ireland will be more accommodating to this info.Just to be sure, I could have the full transcript of the video by emailing tukadmin@thyroiduk.org, right?
Just to be sure, I could have the full transcript of the video by emailing tukadmin@thyroiduk.org, right?
No, you can obtain a copy of Dr Toft's article by emailing ThyroidUK. The video is from a meeting arranged by The Thyroid Trust, nothing to do with ThyroidUK, it's over 1 hour 40 minutes long, you wouldn't want a transcript of the whole video even if it was available. I posted the video and the exact time where Dr Toft made the quote about where T3/FT3 should be if TSH is suppressed so that you could see for yourself what he said.
It's Dr Toft's article in Pulse magazine. They will know what you mean. And as I said above, print the article and highlight question 6 to show your doctor.
I have shown a few articles to my previous Endo that explained the need to raise thyroxine amount, she took a sweep on me by claiming that those raise are for people that had their pituitary gland removed. Could that be the case here? My current endo is more accommodating but I can only see him in 2 weeks time.
I have shown a few articles to my previous Endo that explained the need to raise thyroxine amount, she took a sweep on me by claiming that those raise are for people that had their pituitary gland removed.
Without knowing which articles you are referring to and what they say I can't really comment. But Dr Toft would have made if very clear in his article if his comments only applied to people who had their pituitary removed.
"For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man)"
References are below, you may copy the each line respectively to the browser to view:
"For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man)"
That's nothing to do with raising your dose if you are undermedicated. That refers to one way of starting a newly diagnosed patient on Levothyroxine, dosing by weight, but it is guidance only for a starter dose and then adjustments are made as necessary. This is clearly stated in the BMJ article:
Aim to maintain thyroid stimulating hormone (TSH) levels within the reference range when treating primary hypothyroidism with levothyroxine; if symptoms persist consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis
and in the NICE guidelines for doctors here in the UK:
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2 Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
I am VERY confused by your Endo giving you a Synacthen injection every other month! So your Endo is injecting you with Synacthen, which is artificial ACTH & not treating you with oral steroids? I've never heard of this before. I take it you are not in the UK? However your cortisol level appears high at 817 but how long after the injection was that result? What is your base line cortisol result? You are at risk of being over medicated this way which in time will do more damage to you. As you have hypopituitarism it could be that you are growth hormone deficient & this needs checking as the source of you day time sleepiness. It can occur a few years after getting a diagnosis of Hypopit. Having Hypopituitarism there is no point testing TSH as you won't produce it so you need to go on T4, those is us who are hypopit are advised that T4 should be in the mid teens to be effective. It's also worth getting DHEA checked as well as that can impact on fatigue too.
My endo told me that my thyroid gland is still producing cortisol but the problem is my pituitary gland which is not working well to send signal to my thyroid to produce cortisol, hence the Synacthen which only administer to me once in 2 months or longer as a temporary measure. His goal is to see whether my pituitary gland could still communicate with my thyroid without Synacthen gradually.
Um I'm sorry but the thyroid gland does NOT produce cortisol - is he even qualified?! Your pituitary gland produces ACTH to stimulate the adrenal glands to produce cortisol, as he claims that as you have Hypopituitarism then your pituitary is probably not producing enough ACTH to stimulate your adrenal glands to produce cortisol. It is true that the thyroid, pituitary & adrenal glands need to work together to be effective but the thyroid doesn't produce cortisol. I had a pituitary tumour which caused Cushing's Disease once that was removed my pituitary didn't make enough ACTH to stimulate the adrenal glands to produce cortisol, so now I'm on Hydrocortisone to replace the cortisol I don't make. It is a life threatening condition. Have a look at this website to learn more, your Endo is endangering your life. yourhormones.info/
my pituitary gland which is not working well to send signal to my adrenal to produce cortisol, hence the Synacthen which only administer to me once in 2 months or longer as a temporary measure. My endo goal is to see whether my pituitary gland could still communicate with my thyroid without Synacthen gradually.
This is a very unusual way of treating your condition, it's not the way it is done on most other countries in the world. I have a lot of experience with pituitary conditions as i work with the UK Pituitary Foundation & have contact with a lot of leading Endocrinologists.
Have you been to/through a sleep study? I bought an oximeter that is worn at night. It came out really bad. I took those results to my doctors who then ordered the formal sleep study which in turn got me the apap/cpap machine. I just got it last week & am still getting used to it. It does seem like it is helping
Because your pituitary is not correctly working you are reliant upon thyroid hormone replacement medication and are sleepy because low in range levels of FT3 & FT4 evidences that you are still under medicated. TSH level becomes redundant because is a pituatary hormone.
Adrenals have certainly woken up with that ACTH injection which at least shows they are working. Do you know your 8-9am cortisol baseline? Because the STT gives no indication of cortisol circadian pattern you might find the 24 hour saliva stress test useful (if available in Malaysia) in assessing if adrenal support is required as will need to be working optimally to cope with the required increase in thyroid meds which will increase metabolism.
Previous mentioned hunger could be related to dysregulated cortisol output as cortisol is responsible for helping to regulate blood glucose levels.
Your morning base line is too low. The cortisol circadian pattern should show highest levels in the morning that slowly reduce throughout the day, influences our sleeping/waking behaviours.
There are several reasons for a shrunken pituitary. As you have had a scan I presume it isn’t a tumor. Have you had a head injury? By giving multiple ACTH injections maybe your endo is hoping to stimulate/shock the pituitary/adrenal & pituitary/thyroid connections back into working well, ie raising cortisol & TSH. Have he spoken about steroid medication yet?
The pituitary gland also influences/controls sex organs & thyroid gland as well as the adrenals. Adequate cortisol is essential as is connected to our stress response & responsible for many jobs including helping to regulate blood sugars, salt & water balance, BP, reducing inflammation and making thyroid hormone meds work effectively. These hormones will also be influencing the brain neurotransmitters that help us fall asleep, stay asleep and recharge enough during sleep to manage the waking hours.
Yes, i think you've read my previous post where i complain about sleepiness follow by hunger, this pattern still persists.
Doctor cannot explain why i have a shrunken pituitary gland except to speculate what you've mentioned before, but i do not have any head injury.
My doctor did not mention steroid to treat cortisol level, is it an oral remedy?He did mention an oral medicine that have to be taken 3 times a day which he hesitated to administer and would rather use the synacthen as the temporary solution since my gland is still producing cortisol.
What is STT? There is no such saliva stress test here as blood need to be drawn every time a cortisol level need to be checked.
The usual treatment for this condition is to give Hydrocortisone by tablets 3 times a day, often as 10mgs at 7am; 5mgs at 12-1pm; & 5mgs around 17.30 pm, it is extremely unusual to be given artificial ACTH (synacthen) by injection. It is possible to get your adrenal glands working by very slowly reducing the Hydrocortisone over a long period of time so that the hypothalmus/pituitary/adrenal glands start producing ACTH to stimulate the adrenal glands to produce cortisol. The SST (short synacthen test) is a test done around the world to see how the adrenal glands respond to the artificial ACTH (synacthen). A baseline cortisol blood is taken & then you are injected with the artificial ACTH to see how well the adrenal glands respond to it. Your base line should be between 350-550nmol/Ls first thing in the morning, your cortisol level should rise to over 420nmol/Ls to show that they are working well.
I still feel that your growth hormone needs to be tested as if it is low then that could be the cause of your fatigue.. Have a look at the Pituitary Foundation website pituitary.org.uk also addisonsdisease.org.uk for more information. This chart shows what normal cortisol levels should be through the day, it's highest first thing in the morning & then drops during the day.
Suddenly it occur to me that Cortisol may be the cause of my fatigue, I been taking levothyroxine and vit D consistently although the lower dosage of levo might be disputable. But over the time my tiredness start to build up and the only hormone that seems diminishing is cortisol since i am taking synacthen stimulant roughly once every 2 months
This chart shows the symptoms of low cortisol & adrenal crisis. If you know what your normal blood pressure is then when you feel tired you can check it to see if it is low.
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