Diagnosed with hashimotos. I’ve had a few ongoing issues and symptoms and they’re getting worse. My endo didn’t believe it was thyroid related or pcos related but arranged for other tests like ACTH, RF etc. He also stated at this point they were discharging me as there’s nothing more they can help with. Side note I’ve also got a referral into rheumatology for hypermobility and suspected EDS. I’ve found out when I requested all my bloods from my endo secretary as I wanted to see my history of results that there’s no record of T4 or T3 being tested since 2022.
Had an appt with my GP today as I am honestly suffering with symptoms and my recent ACTH, RF, CRP etc all came back normal. I was really banking on one of these being the cause because I’d been told my thyroid is fine. The only thats not normal is my FSH, prolactin and LH. I wasn’t aware of this until I saw the bloods from Jan on the email from the endocrinology team. She couldn’t find any bloods checking my thyroid other than TSH too. She also was concerned no one has said anything about my FSH etc. Said she wanted to speak to her supervisor but will arrange full test to be done.
Just got her call and she has said they are going to seek advice from the endocrinology team and thinks it’s best I speak with them as they’re the specialists. The same one who thinks nothing is wrong with me and discharged me in January. Who also said if I have any thyroid concerns go through my normal doctor. I’ve cried down the phone because I feel so defeated.
So my question (sorry). Is TSH enough to warrant me needing no levo and assume my thyroid function is fine? What else can I do? I’m so cold all of the time, I’m losing so much hair and my mood is horrific. My partner says I’ve not smiled or laughed properly for two years and I wake up every am feeling hit by a bus.
*I was removed off Levo nov22 due to feeling worse after some time on it and endo suspecting it was postpartum thyroiditis. That’s when they found my tpo positive. I paid private to see him after battling my GP for a referral and he then put me back on his nhs list.
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Shymxo
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I don't think anybody is going to be able to offer much help without a lot more details. We need to see all those blood test results, with their ranges. Quite frankly, there's no such thing as 'normal' where thyroid is concerned because we're all so different. But, the numbers can give us a clue as to what might possibly be wrong.
When a doctor says 'normal', all he means is that the result is somewhere within the range. But, the ranges are usually so wide that it's where within the range that counts. But doctors know next to nothing about thyroid, so don't understand that.
Is TSH enough to warrant me needing no levo and assume my thyroid function is fine?
Short answer: no. Although doctors think the TSH tells them 'all they need to know', it often doesn't. Diagnosing and dosing by the TSH assumes that everyone always has a perfectly functioning pituitary. But they don't. The pituitary can go wonky, just like the thyroid. But as the main aim of the NHS - and other health authorities - seems to be to diagnose as few people as possible, it suits their needs.
If you've once had high, over-range TPO antibodies, then you have Hashi's and that doesn't go away. And, with Hashi's, thyroid hormone levels can jump around, with the TSH following quite a way behind. But, you could also have a pituitary problem at the same time. Did you have excessive bleeding during the birth of your baby?
But, anyway, we might spot something the doctors missed (wouldn't be surprising!) if we get to look at your labs. And if not, we can maybe suggest what else needs testing. So, do post them, won't you.
Here’s all the bloods I’ve had recently and ones I’ve pulled from what I’ve had from my endo’s office.
Note there’s no record of T4 or T3 being tested since 2022 which was 20.9.
- The super long march 24 list photo was done with suspected anemia after a colposcopy the silver nitrate came away and I bled out for 7 days ha… the MCV etc is a common thing for me and they ignore due to my thalassemia minor beta trait.
Jan 2024
FSH: 2.3 iu/l low (3-13)
Prolactin: 88 mu/l low (100-500)
LH: 4 iu/l borderline (4-14)
TSH: 1.96 (0.3 - 4.20)
June 2023:
FSH: <1.0 iu/l LOW (3-13)
LH: <1.0 iu/l LOW (4 - 14)
Prolactin: 179 mu/l (100-500)
SHBG: >200 nmol/l HIGH (28-146)
TSH: 2.15 (0.3-4.20)
April 2024
ACTH short synacthen done at 11:30
323 to 698 normal.
Range was minimum 200 nmol/l rise to a peak greater than 500.
I have the RF, anti ccp, esr etc if you think it’s of use too…
Edit to add: I didn’t haemorrhage during childbirth no. I bled a lot and had clots in fact one huge one a few days after that scared me but no one was bothered
Hi, so I have also come to the conclusion I’ll order some private tests. It’s a whole mess…
Folate, B12 and ferritin are on the long k and I posted but will check again.
Sorry it’s probably the way I’ve tested. The ACTH stim only shows cortisol serum values. Looking into this it’s because my cortisol is in range they won’t test ACTH.
The range for the test was
Normal response:- Cortisol rise of at least 200 nmol/L, to a peak greater than 550 nmol/L.
My baseline was 323 nmol/l and after 30 mins it was 698 nmol/l so I’m reading that as normal function.
The ACTH stim only shows cortisol serum values. Looking into this it’s because my cortisol is in range they won’t test ACTH.
Actually, the whole point of the test is to find out why cortisol is low - so I presume your early morning serum cortisol test was low?
As I think I said before ACTH is a pituitary hormone which controls production of cortisol by the adrenals.
So, if your cortisol is low early morning, but responds to the ACTH injection and rises, this shows that there is nothing wrong with the adrenals themselves, except that they aren't getting enough ACTH to stimulate them to make cortisol. Therefore, it must be the pituitary that is at fault and not making enough ACTH.
However, doctors are either not very clear why they're doing this test - although I would have thought that logic would have explained it - or they've entirely lost the reasoning behind it. But, there's not much point in doing the test if they don't test the ACTH level first.
As you're cortisol level rose with stimulus to the adrenals, that shows that there is nothing wrong with your adrenals themselves, it is probably the pituitary that's a bit sluggish.
Are you diagnosed with autoimmune hypothyroidism and are not taking levothyroxine because you felt worse on it and your endo suspects postpartum thyroiditis even though you have positive antibodies (TPO)?
Hi! Initially diagnosed underactive. Symptoms did get better then after a good few months started to feel awful. Went to GP for help kept telling me my levels are fine. Asked for an endo referral which had to fight to get but went private. Saw him he said he suspects postpartum thyroiditis. Took me off ran blood tests found my TPO is positive and I did feel better not being on Levo. I had gone to him suspecting early menopause as my symptoms did align with that. No evidence of this but said my pcos doesn’t help. Then about 8-9 months later I start feeling rubbish and it’s been a steady decline and kept being told my levels are fine. Then now it’s a rapid decline I’m getting worse and still being told levels are ok in Jan. my symptoms aren’t thyroid related so discharged me but arranged for further AI tests. Said if I had thyroid symptoms go via GP.
So yes you’ve understood right just wanted to explain the timeline for you.
Edit: I’ll also add me being diagnosed with thyroid issues was a fight to begin with no one would run bloods it took me collapsing and going to A&E. They actually tried to say I had postnatal depression and I asked if they’d checked my thyroid (not sure why probably googling at the time) which they said no. Next day I get a call from a&e apologising as they checked and my levels were crazy high so I need levo asap. This was 2021
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