I am extremely well and all my bloods seem within normal range to me (but not the GP)! I am 61 years old and was diagnosed with Hashimotos Thyroditis and Chronic Fatigue in 2004. My only health issue is very erratic sleep (one night 8 and a half hours, the next 4) which I handle by resting in the afternoon on the bad nights.
My issue is that there are currently concerns from a new GP that TSH is suppressed. Presumably he is concerned with the risks of Osteoporosis, however, I am a fitness instructor and Yoga Teacher with a hobby of body building and between times also walk and Dance so weight bearing activity is way above average (I exercise for 3,000kcal most days). My last DEXA scan was normal.
Although an endocrinologist from 2016 suggested this TSH suppression (which has always been present) was of no concern, and my current free T4 and T3 is at the level the endocrinologist would have been happy with, the GP is asking for reassurance via another referral to an endocrinologist who can support the GP with my current prescription (as the previous consultant has since retired). The current regime (below) has suited me for over 15 years (with the odd tweak as levels change).
TSH 0.02
Free T4: 15.9
Free T3: 5.2
Vit D: 144
Ferritin: 167
Folate: 9.6
Vit B12: 407
HBa1c: 35
GFR: 69 (below range)
I would be extremely grateful for any advice regarding who to ask for referral too in the uk who would not be disturbed by the small dose of NDT that I have taken for 20 years with good effect and if you feel I should be overly concerned with the TSH suppression given my lifestyle choices that will contribute to my bone health.
I am currently under the sleep hospital to work out how best to stabilise my sleep which is considered by them to be disordered. However I have suffered with this pattern for 40 years so less anxious than they are and certainly resistant to some of the very strong drugs that have been suggested (eg Gabapentin).
Current regime
150mg Levothyroxine
1 grain Armour (60mg)
Other meds:
Tibolone (HRT)
Bisoprolol (very low dose)
A great many thanks in advance for your wise advice xxx
Written by
YoginiDancer
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Oh, beware of new GPs trying to justify their existance!
TSH has nothing to do with bones. Your bones would be at far greater risk if you weren't taking the little bit of T3. What they need is good levels of FT3 and optimal nutrients. They do not need TSH!
(the first reply also has links to loads of useful discussions on the subject of low TSH / Risk vs Quality of life)
If i were functioning as well as you , i would not want to mess with my dose ... when you feel ok but agree to alter doses just to please the numbers, a nice life can fall to bits pretty quickly ............ 'if it ain't broke don't fix it'.
Oh my goodness...that was my instant response to him! I practically fell on my knees weeping at the thought of upsetting what took years of heartache and huge expense (and the loss of a great academic career) to get right! The old adage could not be more right as you say!
Are you taking any magnesium, this often helps improve sleep
How much vitamin D do you take
your B12 is on low side and folate
Are you currently taking separate B12 and separate vitamin B complex …..if not suggest you start
Do you normally split your NDT
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)
NDT or T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
I normally take all the thyroid meds in the morning. I was splitting until I saw the consultant who told me not too but that was in 2016 so outdated advice????
I'm on Vit B suppliments
I always have early morning tests witout taking meds but I didn't know not to eat breakfast either or not drink my tea. Will ask for a re-test now in the hope I can placate to doctor and not have to find an NHS Endo that will support Armour as I suspect these no longer exist. Dr will only listen to NHS Endo.
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
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 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) and continue separate B12
Post discussing how biotin can affect test results
Doctors today are overwhelmed with the care and feeding of electronic medical record systems, and a simple rule of thumb (TSH as the gold standard) is going to win out over reading a clinical article and having to absorb an explanation of why TSH is not a valid measure of treatment success.
What I did to solve this dilemma with my endocrinologist and GP who took one look at TSH = 0.02 and freaked out ( 😱 ) was to cease hormone therapy for two days before going to the lab for the blood draw. This means I resumed the hormone on day three after the lab visit. Omitting two days of treatment pushed my TSH to 1.02 and this made everyone very comfortable. I felt miserable on the third morning without hormone therapy, but it seemed worthwhile. And easier than trying to educate a person with too little cognitive bandwidth for learning new things.
Oh my land this made me laugh. And it's a brilliant idea I had dabbled with myself. I KNOW when I'm over treated. I'm very in touch with my body. So it needs be I'll do what it takes to give them the numbers they are happy with and we can all sleep at night!
I was on 1.25 mcg bisoprolol and it gave me very vivid claustrophobic nightmares, so disturbed sleep badly….could this be a reason for your odd sleep patterns?
I've had it for 40 years and only been on Bisoprolol for about 15 so probably not but useful info as I've swapped to taking it in the evening having read on here that it shouldn't be taken with Levo
Perhaps shift your Bisoprolol to am and levo to nighttime then for a trial. I had not heard about not taking the two together but have taken my levo with part of my T3 dosage anything from 4-7 am as awake to go to loo, so at least 5/6 hrs away from bisoprolol when I took that.
Oh, sooo annoying, most gps and a lot of endos freak out at a suppressed tsh. I'm using NDT for over 6 years and my tsh suppressed like yours. I am passed menopause and actually dexascan revealed my bones are excellent. I feel so good. They are obsessed with TSH.😩
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