Hi all, This is a follow up of my earlier post 6 weeks ago. Repeat thyroid blood show test to be highly abnormal.
TSH 0.01 (0.3-5.0) prev 0.01
T4. <3.2 (7.9-16.0) prev 5.7
T3 2.6 (3.8-6.0) prev 3.5.
Would welcome any insight. GP now wants me to be referred to an Endocrinologist. Thank you.
My immediate thought is pituitary failing to make TSH.
You need to be seen urgently.
The link below is very heavy reading but your test results suggest that is the direction you are heading towards.
GPs may never have seen a case, not know much about it. Hence urgency may not be appreciated.
StatPearls
Myxedema
Hello again :
Does your GP know you were self medicating with NDT -
How long now has it been since you stopped taking Thyroid S and how long have you been self medicating with various brands of NDT ?
There is nothing on your profile page -
Do you have a diagnosis of hypothyroidism and what is the cause of this health issue -
Have you ever tried T4 Levothyroxine - the first line treatment option prescribed by the NHS ?
Hi,Yes GP is aware.
Stopped NDT 12 weeks
Diagnosed hypo in 1995
Was on levo body failed to convert t4 to t3 hence moved to NDT.
Thanks
When your doctor acknowledged that T4 monotherapy wasn't working well for you -back in the 1990's -
did you try any synthetic T3 / T4 combos or have a trial of T3 only - before being switched to NDT on the NHS -
as I think back then - all thyroid hormone treatment options were freely available in primary care through your NHS doctor - so there was no need to self source.
So presume you have tried all these thyroid hormone replacement options and found NDT the better option -
some people find the fixed ratio 1/ 4.22 - T3/T4 in NDT needs tweeking a little - either with a little T3 or a little T4 ?
No hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal - could these be factors worth looking at ?
You really do need to be taking some form of thyroid hormone replacement while waiting for hospital endocrinology to respond.
Do you have any other health issues - what was your diagnosis ?
As your TSH hasn't risen since you stopped the NDT, it's hardly surprising that your thyroid hormone levels are low and dropping: the thyroid cannot make thyroid hormones without the stimulus of the TSH. If your GP doesn't know that he should hand in his licence because that is basic Thyroid 101. Nothing mysterious about it. He should start you back on levo immediately before too much damage is done.
You may have to pester your GP to make that referral really fast before you really feel the effects of what’s happening here. Your TSH isn’t coming up, which means your thyroid isn’t receiving a signal to make any thyroid hormones. Which you’ll already know is not good news at all.
As others have said, your GP shouldn’t really be quite as clueless about this as they appear to be—it isn’t rocket science.
I’d say a full on referral probably isn’t needed. A conversation with an endo would probably get a prescription for levothyroxine written pronto!
If you start to feel worse, please get yourself to A&E.
Appreciate your reply. Endo referral made. Prescribed low dose levo. What I want to know is why my gland is failing to produce TSH?
It isn’t your thyroid itself—at least, that’s not the primary issue at the moment. Your hypothalamus and pituitary aren’t sensing that your thyroid needs to up production of thyroid hormones. It might be that you’ve always had a degree of central (secondary) hypothyroidism and if so, the T3 in the NDT you used to take has now permanently suppressed the hypothalamus-pituitary-thyroid axis so it can no longer respond.
The answer is thyroid replacement hormones. And a low dose isn’t going to cut it—that’s not going to prompt the feedback loop, it’s just going to leave you without enough thyroid hormones.
Your GP sounds dangerously ignorant.
Jazzw do you have any research evidence proving that ndt if taken long term permenantly suppresses the TSH? Ive never heard of this....but I'm not up to date. No Endo I've seen has ever mentioned this to me. Many Thanks 😊😊
It’s more that long term use of T3 seems to have this effect in some of us—and T3 is in NDT of course.
I know I’m an experiment of n=1, but when I stopped taking NDT, my TSH refused to rise. It also happens in people who’ve had Graves—another reason why it can be a really bad idea to use TSH as an indicator of whether one is on enough thyroid hormone replacement cos if it doesn’t rise no matter how low your dose, you’re just going to end up hopelessly undermedicated.
I hear what your saying Jazz and yes makes sense but it's the research I am after. The trouble is endos think by lowering your dose for long enough the TSH will eventually rise......this if course will make someone ill. I've had it thrown at me. I dont like supposition so asked them for the evidence this IS the case.....none produced. There's too much supposition that goes on endocrinology and it really annoys me.
Me too, Wavey. I think because so few understand it, they don’t even think to undertake research.
Hi Wavey—just tagged you into another post because SlowDragon mentioned some research on this. It appears it’s to do with hysteresis. Googling “hysteresis and TSH” found some interesting results.
Thanks Jazz will try to find it. x
Autumn8 If your hypothalamus and/or pituitary are the source of the problem, I would suggest also asking for an early morning (8-9am) cortisol test. As well as being involved in production of TSH, the pituitary also produces ACTH which is the trigger for cortisol production.
For info, although not the brand of NDT that you were using, I would assume that the warning that Acella have on their website about NP Thyroid will apply to all makes of NDT, that it "is contraindicated in patients with uncorrected adrenal insufficiency, untreated thyrotoxicosis, and hypersensitivity to any component of the product."
How long were you ndt? We're you diagnosed formerly with Hypothyroidism?
I'm just shocked that you stopped taking your thyroid hormone replacement all together. Why did you?
Its really important you are put onto thyroid hormone replacement as soon as possible as both your ft4 and ft3 are very low. Your suppressed TSH maybe because you were on a ndt for a long time.
It's likely you will offered levothyroxine. Though you say you don't convert well.....do you have documentation from a specialist to substantiate this. Combined therapy such as levo and liothyronine or ndt (latter rare on the nhs) has to be initiated at Secondary level with a nhs endocrinogist. So it's possible you will be fast tracked through to see an Endo if that is what you've been advised to take.
I've seen a nhs Endo recently as I'm on ndt. Just going through a torturous process to get my ndt back on the nhs. It's a bit like pulling hens teeth......rare to win but I'm very persistent.
Hi,Yes formerly diagnosed with hypothyroidism
NDT for several years did very well on Nature throid until they stopped RLC stopped manufacturing this. Problems started after when on Thyroid S.
NDT stopped because gp said they needed to see on retesting rise in TSH. Told gp to prescribe levo prior said not until retesting, believed ndt suppressing tsh levels. Told gp tsh would not rise.
Levo does not convert to T3 for me. Yes saw a specialist confirming this. Have requested Endo referral. I want to know why my gland is not producing tsh?
Thanks for your response
If you have a history of hypothyroidism that shows you need it. A GP should not stop that treatment without your consent. They have the right to refuse any medication they don't feel comfortable with using. However this should not compromise your health. Any combination thyroid medication precribed on the nhs should be reviewed at Secondary level not at primary level. So your GP shouldve continued to prescribed until a nhs Endo reviews this. He should not have stopped it as its dangerous to suddenly stop thyroid medication. Words from my local Endo who wrote to my GP whrn he stopped my ndt.
Your GP will not know what he/she is doing. Experimenting on you by stopping your thyroid neds a d waiting for the TSH to rise is outside his area of expertise. And he/she must refer you on as an emergency to Endocrinology. .
You do have the right to be treated at any hospjtal of your choosing in England....
GPs do not know how NDT works. Absolutely irresponsible and harmful that your treatment was stopped due to low TSH.
Talk to a private specialist who works with NDT and look at a different brand. The one I go to does a free 30 min phone consult to discuss your needs and works by patient symptoms and getting FT3 up.
Referral on NHS frequently takes 6-12 months or longer
Why TSH is sluggish - mechanism called 'Hysteresis'.
healthunlocked.com/thyroidu....
starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "
and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.
if TSH has been suppressed a long time it may never rise
Need to dose by testing Ft4 and Ft3 and ignore TSH
ESSENTIAL to test vitamin D, folate, ferritin and B12 ….with very low thyroid levels, vitamin levels likely crashed unless on significant level of supplements
Exactly what vitamin supplements are you taking
Going forward
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 who will prescribe T3 alongside levothyroxine, or possibly NDT
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS. All but impossible to get NDT on NHS
thyroiduk.org/contact-us/ge...
How long have you been on 50mcg and which brand levo
Get next increase to 75mcg
Retest 8-10 weeks after each increase
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)
T3 …or NDT .day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Blood Results say abnormal contact patient!!
Abnormal test results
test results help 
Latest lab results - B12 too high?
