I’m still working to get an official diagnosis for the complicated mess of adrenal/thyroid/pituitary conditions I’ve been experiencing for the past few years and have a much-awaited appt with my endo on Monday. I get super nervous before any appts for fear of not communicating clearly enough or not providing him with some vital piece of information, so I’m determined to be fully prepared.
Currently his theory is that I have a damaged pituitary gland either from concussions or chronic EBV from many years ago, which has lead to secondary adrenal insufficiency and (maybe?) central hypothyroidism. I’m currently taking 60mg of hydrocortisone a day for the AI and 25mg levothyroxine. I also take Vit B, magnesium, Vit D, Zinc, Vit C, a probiotic, 10mg DHEA and 4.5 mg low-dose naltrexone for severe fatigue.
I’ve had a series of scans ahead of my appointment and am fairly certain I have either a goitre or nodules as I’ve had a sore, full throat for years, with pain and fullness now radiating up to my ears, my voice has changed, there’s a whistling in my throat when I breathe hard and I have a constant feeling of a marble stuck in my throat. And to my inexpert eyes, my ultrasound images appear to show at least two unusual growths on my thyroid.
I also have severe fatigue, terrible brain fog that comes and goes, bone pain, joint and muscle pain, weight gain, crazy facial swelling that comes and goes, TMJ pain, hair loss on my head and lower legs, hair growth on my face, dry skin, puffiness. Honestly, it’s all pretty miserable and I’m hoping (probably too much) for clarity after Monday.
Here are the three most recent thyroid test results:
Feb 22
TSH 0.37 (0.5-4.0)
FT4 16 (10-20)
FT3 4.9 (3.5-6.0)
April 22
TSH 0.33 (0.5-4.0)
FT4 17 (10-20)
FT3 5.3 (3.5-6.0)
July 22
TSH 0.5 (0.5-4.0)
FT4 – lab did not complete test
FT3 – lab did not complete test
I had vitamins, FBC etc taken in April but my doctor didn't give me the results.
In February of this year, however, these were my results:
Cortisol 219 (120-620) – This was after my 5am hydrocortisone dose, while on 40mg/day. I'm now on 60mg/day.
B12 1431 (301-740) – I have since reduced my B12
Vit D 42 (25-50 = Mild deficiency) – I have since increased my Vit D to 10,000 units/day
DHEAS 1.1 (1.9-7.3) – I now take 10mg DHEA/day
Iron 13 (10-30)
Transferrin 31 (32-48)
T. Sat 21% (13-45)
Ferritin 54 (30-165)
I also have super high cholesterol despite being an active (as I can be) non-drinking, non-smoking vegetarian with good nutrition.
I will be getting further blood results on Monday, which should be very interesting, but in the meantime I have a couple of questions:
My understanding is that suppressed-low TSH combined with normal-high T3/T4 is usually a sign of hyperthyroidism, but my symptoms are all very much hypo and my endo has said I am hypothyroid.
Do my results then point to central hypothyroidism?
Or could a nodule/tumour explain the results?
Or is there another possible reason or pattern that anyone can spot?
Thanks in advance for any insight you might have. The week leading up to an appt is always stressful for me, but just writing everything down has helped!
Cheers, B
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My understanding is that suppressed-low TSH combined with normal-high T3/T4 is usually a sign of hyperthyroidism, but my symptoms are all very much hypo and my endo has said I am hypothyroid.
Not when on thyroid hormone replacement, no.
And, if your FT3/4 are still in-range, you're not hyper.
It's very high FT3 that indicates hyper, not low TSH. If your FT3 is very high, of course your TSH will be low, because when under 1, it follows the Free levels, it doesn't drive them.
If you have a faulty pituitary, your TSH is going to be low because TSH is a pituitary hormone. And, if you have a faulty pituitary - as you would most certainly appear to have, then TSH in no way indicates thyroid status and should not be relied on in any way, shape or form.
You have hypo symptoms because your FT3 is low. It's low T3 that causes symptoms. TSH does not cause symptoms whether it's high or low.
Do my results then point to central hypothyroidism?
Depends if they were done before you started levo or after. You cannot tell once you've started levo. BUT if he has diagnosed secondary adrenal insufficiency due to damaged pituitary, then it's obvious that you're going to have Secondary Hypo too. I don't understand why he's hesitating with the diagnosis.
Or could a nodule/tumour explain the results?
A tumour where? I've never heard of anyone having a tumour on their thyroid. But, a tumour on your pituitary could stop the pituitary making sufficient TSH to stimulate your thyroid to make enough thyroid hormone.
Nodules, on the other hand, could cause hypERthyroidism. But not hypOthyroidsim. It is possible to have a nodule that secretes its own thyroid hormone, making you hyper. That's called a hot nodule. The reverse is not possible, I don't think. And, a nodule on the thyroid would not cause poor performance from the pituitary.
I’ve had a series of scans ahead of my appointment and am fairly certain I have either a goitre or nodules as I’ve had a sore, full throat for years, with pain and fullness now radiating up to my ears, my voice has changed, there’s a whistling in my throat when I breathe hard and I have a constant feeling of a marble stuck in my throat.
It's perfectly possible that your thyroid is swollen - i.e. a goitre. Have you had antibodies tested? Youe could very well have Hashi's and Secondary Hypo (pituitary problem). One does not rule out the other.
Possible to have large nodules, too.
I have Ord's - which is Hashi's without the goitre - and for many years before my diagnosis I had those throat symptoms. ENT told me it was 'all in head', but they weren't looking for a thyroid problem because I didn't have any sort of thyroid diagnosis at that point. But that's what was causing all those symptoms. By the time did get a diagnosis, my thyroid had shrunk to the size of a small pea and those symptoms had gone.
I also have super high cholesterol despite being an active (as I can be) non-drinking, non-smoking vegetarian with good nutrition.
Cholesterol levels have nothing to do with diet. Cholesterol is made in the liver - and it's made there because the body needs it. The more you consume in your food, the less the liver makes. The less you consume, the more the liver makes, to try and keep a steady level. However, when T3 is low, the body cannot process cholesterol correctly, and it tends to build up in the blood. Increase the FT3 and the cholesterol level should reduce.
morningGG .....did you miss a 'not' in here ? "And, a nodule on the thyroid would cause poor performance from the pituitary." .. (or am i the one who's not awake yet ,lol)
No, you're fine. It was very early morning - couldn't sleep for the heat - so it was me half asleep. Besides, as I've noticed many times, my keyboard just does not like typing negatives! 🤣🤣🤣
greygoose, thank you so much for taking the time to answer so thoroughly. This was so incredibly helpful in making things clearer in my head ahead of my appointment. I've just gotten home from seeing my endo so I'm still reeling a little, but the info you provided helped me get my head right before going in, which ultimately helped me to make some actual progress!
It appears that I have something " very weird" going on (his words) and he is taking my case to the department for further input because it doesn't fit any straight forward diagnosis. However, he has suggested there are at least three things happening:
- adrenal insufficiency, which we knew about- De Quervain's thyroiditis
- acromegaly
I've got some tests to do this week, including another pituitary MRI to double-check for an adenoma, and he has flagged the potential for a total thyroidectomy.
Fingers crossed that the next few weeks will bring some answers, but is it weird to say I'm almost relieved?
No, my IGF-1 has been increasing slowly and is now well above range.
November 2021 - 29 nmol/L (11-36)
February 2022 - 35 nmol/LJuly 2022 - 54 nmol/L
I think this result in particular freaked him out as he wasn't expecting it. I have a number of the symptoms of acromegaly (puffy hands, fatigue, weakness in hands, carpal tunnel, skin changes, voice changes, headaches) but had put most of them down to AI and thyroid.
I'm booked in for an insulin stress test this week which should tell us if it's acromegaly, so that should be interesting.
In terms of the DQ diagnosis, I think he suspects it because I have never tested positive for any antibodies but my thyroid is incredibly painful and swollen and has been that way for years. I know De Quervains typically looks like hyperthyroid which resolves within months but in rare cases can lead to a chronic hypothyroid state.
I really want to him to look at the ultrasound images because to my eyes there are definite growths visible on the scan, which could also be why my thyroid/throat/neck/jaw/ears hurt so much, and I want to make sure he's coming at this diagnosis with all the information.
Can I ask why you thought DQ was such a surprising diagnosis? (I knew nothing about it until yesterday, so I'm just super curious.)
Because you're hypo, not hyper, and because you already know you have a pituitary problem, with secondary adrenal insufficiency, which would explain the low TSH without looking for more complications. Seems to me he's only looking at your TSH, where thyroid is concerned, and interpreting the level as being sub-clinical hyper, even though the Frees are low. To me, that just doesn't make sense.
You state you've had a number of scans done does that include an MRI of your pituitary? That would possibly highlight if you had any damage to your pituitary.
Also from your description and my limited personal knowledge have you been diagnosed with a multinodular goitre?
I'm asking this as I'm a strict vegetarian and have recently been diagnosed with this condition. Hopefully the scans you've had done will show if you have nodules on your thyroid.
It is possible that my goitre has been caused by my vegan diet as I've found that I have an iodine deficiency. So with you mentioning being a vegetarian it might be an idea to get an iodine test done to check for an insufficiency. It would be a non loading urine test collected over 24 hours.
Hopefully now that you've increased your vitamin D intake your bone and muscle pains may subside a little.
Good luck with the endo appointment. I'm still working through getting a diagnosis. Even when I've been fully prepared I've done the tongue tied/startled deer in the headlights type of thing and come out of my appointment thinking what just happened there?
Thank you so much for taking the time to reply. You prompted me to dig back through my records to the only iodine test I've had (a couple of years ago) and I was definitely deficient back then at 57 ug/g (Range 70-500). I didn't get a chance to highlight that with my endo today but I have a follow up soon and will be sure to talk about it then.
I have had a pituitary MRI a few months ago which came back clear, but after today's appt and the likelihood that I have acromegaly, the endo is sending me for another later this week. I know that microadenomas can be tiny and sometimes get missed so maybe that's what's been happening with me.
My endo said that acromegaly can result in a lot of bone and joint pain due to the inflammation it causes, which incidentally may be the reason for my newly diagnosed thyroiditis too.
Interestingly (and frustratingly) though, neither my GP or endo seem willing to look at the actual images of my thyroid ultrasound, instead going off the radiologists report alone. I've had a look and can clearly see a black 'something' in the middle of my left lobe that shouldn't be there. At today's appt my endo suggested that I'll probably have to have a total thyroidectomy if the acromegaly treatment doesn't alleviate the pain and inflammation in my throat, so a thyroid surgeon will have to look at it anyway, but I had hoped to hear whether there were nodules present.
But, I'm taking today's outcome as a win anyway! I learnt a lot and for the first time in months feel like I'm making progress.
Good luck on your journey too. I hear you completely on the deer in the headlights feeling. I'm so glad I took SparklingSunshine's advice and took a bullet list in with me. It helped so much!
That's good that you feel like you're now making progress. I also find lists a great help too though often find they get too long and I have to shorten them🤣
I'm not making much progress with my endo though the ENT thyroid surgeon has been really helpful. This week I've got the pre-op to my hemithyroidectomy then the actual surgery the following week. Though not feeling that happy about it as the endo appointment's been cancelled just before the op so no chance to ask any questions.
Not managed to get any of my pituitary tests and other results despite repeated requests to endo's secretary and my GP; not sure if this is gaslighting? Whatever it is it's not good. Being told a below range FT4 is my 'normal' and they won't prescribe replacement hormones for me despite being symptomatic and unwell seems very cruel.
I had some research documents printed off to discuss at my appointment and other guidance from the forum as to why I need replacement hormones but I'll just have to email them to his secretary instead.
Sorry for monopolizing your thread! Really glad that you are learning lots from this forum. I've found that the knowledge here is fantastic and I have learnt and are still learning every time I read a post!
Oh that's horrible! Waiting so long to have these conversations and then having them cancelled is torturous. I'm so sorry you're going through all of that ahead of your operation. And no need to apologise! I think we all understand the need to be heard and seen when going through this hard stuff. I hope you're able to get some help and some answers soon. 😊
Slow traveller you have been given good advice by greygoose . I just wanted to add: you speak of low TSH high ft4 and ft3 showing hyperthyroid - this doesn't mean results which are within range. Your results are not hyper as ft4 and ft3 are well within range. True hyper results would be along the lines of TSH 0.001 with ft4 50 (10 -22) and ft3 29 (3.1 - 6.8).
Yep, I'm only on 25mcg levo. My endo has been very cautious due to my adrenal insufficiency. Both times I've either started or increased my levo my adrenals have crashed and left me sick for months so he's been very (very) cautious. I told him today that I felt very undermedicated but I think the acromegaly investigations will have to happen before he will consider making any thyroid med changes at this stage.
I had to take propranolol in order to get levothyroxine dose increased higher (a beta blocker- propranolol reduces adrenalin, also slows uptake and conversion of thyroid hormones) More on my profile
It's such a complex relationship isn't it? And now that he's suggested acromegaly, I've also discovered that this might explain why my adrenals need more propping up than is typical. (People with AI and acromegaly apparently need about 20% more hydrocortisone than other patients and I'm already on a high dose of 60mg/day).
I've done both cortisol and DHEA tests.
Cortisol:
August 2020 - 166 nmol/L (120-620)
November 2021 - 211 nmol/L (On 20mg HC/day)
February 2022 - 219 nmol/L (On 40mg HC/day)
July 2022 - 560 nmol/L (On 60mg HC/day)
DHEAS:
Always been under-range, but the most recent result I have is from Feb 2022 and is 1.1 umol/L (1.9-7.3) and that was with supplementation. I'm now taking more and was retested, but I don't have the results yet.
I just don't know what to make of all of this because no matter how I look at it there are parts that don't fit together. I get some answers and some more questions come along. But I guess that's the nature of these kinds of complicated issues. I'm sure I'll get there eventually.
HiI totally get what you're saying about getting anxious before seeing a consultant, especially if you have a complex medical history. I'm the same and one tip I can give, which might be too late now for this consultation, but might be worth remembering for future reference, is to either write or email to the doctor before you see them.
List symptoms, when they started, what investigations you've had, results, any medications you've tried, if they helped, did they give you side effects, did they do nothing.
Not only will you give the doctor a heads up and save time in the consultation by not going over old ground again, but it will ensure you don't miss anything out. Which I've done. Then you kick yourself afterwards.
It's all too easy when you've got a a lot to remember and a limited time to say it. Plus it can give you a sense of order and a bit of control. Also something in writing carries more weight than a verbal discussion, where both sides can forget what is said. I've also done this with my GP recently when requesting certain things. They can't then claim you never asked them if they've got in black and white lol.
I saw an NHS neurologist in June and did this and he said it was extremely helpful. I would always ask the doctor first if they mind but genuinely can't see why a conscientious medic would have an issue with it. Good luck.
PS you can always make notes or bullet points of the relevant issues you want addressed and take them in with you. And use them 😀
Sparklingsunshine, thank you so much for your advice! I've been keeping a symptom diary since January this year, which is really helpful for tracking changes when I change medications etc, but your suggestion to break it down into investigations/meds/questions/etc was so helpful. I was able to look at the list on my phone throughout the appt and make sure I had covered the major things before I left. (Of course there's always more I could have raised but at least now I can sleep easy knowing I covered the things that were most pressing.)
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