Might be in trouble..

[lau99]

Hi everyone, thank you so much for all of your insightful responses to my last post - I'm nearing the end of my Master's degree so have quite a bit of work to get through, but I'll do my best to start slowly responding to all of your comments soon

Today I have a bit of a conundrum...following the lactation symptom that I noticed a couple of weeks ago, I phoned up my NHS GP to make an appointment to investigate it (big mistake). They ran some bloods the same day that I went in to see them, but unfortunately for me, they ran thyroid function tests as well as the prolactin test that I originally went in for. They showed a suppressed TSH and above-range free Ts (T3: 12.3 (3.1 - 6.8) and T4: 27 (12 - 22) but I was unaware before getting to the appointment that they'd run thyroid function tests and I took my usual morning Armour dose less than 3 hours before the appointment. The prolactin was also raised at 728 (102 - 496), but my liver and kidney function is all normal.

I've just got off the phone with my GP and admitted to her that I've been taking Armour for the last few months. While she admitted that she was completely unfamiliar with the medication, she suggested that my private endo might not be a legitimate doctor because he isn't on the NHS register (despite being GMC registered) and said that she would email my NHS endocrinologist about me taking this medication, along with the results. She didn't suggest a cause for the raised prolactin beyond stress (what the appointment was meant to be about).

I just know I'm going to be in big trouble with the hospital, especially considering the awful experience I've had with them being undermedicated. I've also seen in local thyroid groups that my NHS endo is particularly cruel to patients taking NDT, so I'm hoping that she at least spares me the harsh words and just discharges me from her care upon finding out (though it will probably also mean being branded as non-compliant or difficult on my medical record again). I wish I'd just made an appointment with my private endo about this before/instead of going to the NHS, even if it would cost a lot of money...I'm just so tired of getting told off about my blood results and I just know that that's what I've brought upon myself here as well.

[SlowDragon Administrator]

Even with taking your NDT before this test …..that’s quite a high result

How long have you been on current dose NDT ?

How much Armour are you currently taking

Are you also taking extra levothyroxine

Normally on NDT Ft4 is low, often below range ….even if TSH is suppressed and Ft3 high

Do you normally split your NDT into 2 or 3 separate doses spread through the day

When were vitamin D, folate, ferritin and B12 last tested

Suggest you retest yourself

Day before test always split NDT ….last 1/2 or 1/3rd of daily dose 8-12 hours before test

[lau99 in reply to SlowDragon]

Oh, that's unusual re: the low T4 on NDT - I didn't know to expect that. I'm currently on 4 grains and take 2 in the morning (one tablet) and 2 right before bed. Aside from the lactation (which we don't know for sure is a side-effect), I get on with Armour well and have no side-effects, just lingering symptoms from being hypo that seem to be improving slowly. I wish I'd foreseen that they would likely test my thyroid levels so I could have prepared accordingly.

My vitamins were tested exactly a month ago and showed B12 and ferritin in the middle of the range, slightly low folate, and low, but just in-range vitamin D.

[SlowDragon Administrator in reply to lau99]

Can you add the actual vitamin results and ranges

What vitamin supplements are you currently taking

[lau99 in reply to SlowDragon]

Ferritin: 71.8 (13 -150)

Folate: 2.98 (3.89 - 19.45)

B12: 116 (37.5 - 150)

Vitamin D: 53 (50 - 200)

I am not currently taking any supplements as I was struggling to take them away from medication when I was still hypo.

[SlowDragon Administrator in reply to lau99]

You definitely need to improve vitamin D and folate

Vitamin B complex

Suggest you take after breakfast at least 2 hours away from NDT

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

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)

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

Vitamin D

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

[lau99 in reply to SlowDragon]

Thank you, SlowDragon I am finding taking the NDT much easier with regards to timings so will be adding in supplements this week.

[pennyannie]

Hey there :

When taking NDT you dose to the relief of symptoms :

There was no ' science or blood tests ' years ago, nor knowledge that we even had a T3 and T4 hormone circulating in our blood.

I guess this ' stand off 'with the NHS endo would have happened sooner or later as you have thought through all the time you have spent going around in circles and decided to go elsewhere - which probably was the underlaying NHS plan all along.

Just guessing later would have given you more time to feel able to stand your ground better with this lady who it appears likes to bully patients, probably because she knows she is failing them and secretly feeling inadequate.

Having said that your results look as though the T4 isn't being utilised well -

Did you ever get any feedback on the liquid T4 absorption test - or did I miss that one ?

I think you are still dealing with SIBO issues which could be responsible for this blood test reading but possibly you are just one of those people for whom any form of T4 is not a viable option and need to be looking at T3 only medication -

I don't know as I have no idea how much NDT you are taking nor the timings and splits of the doses - if you even are.

I only dose once a day and need to wait over 8/10 hours and to have eaten some toast to get my T3 down to around 100% through and my T4 will be at around 25% through :

I take my NDT at around 3,00am at a toilet break, sleep like a log and have no symptoms of overmedication - though if my doctor looked at my results s/he wouldn't understand them and as the TSH is stuck down at 0.01 I'm over medicated - and nothing else matters.

I don't know how, if the protocols work, but maybe keep the endo who is actually treating you now, in the loop ?

Please stop worrying about someone who isn't loosing any sleep nor worrying about you.

[lau99 in reply to pennyannie]

Perhaps you're right...I am wondering if I should just phone the hospital to ask to be discharged (if I'm allowed to do that?), or if that might be cowardly of me, or shooting myself in the foot. There was no real verdict from the absorption test aside from the fact that my absorption was said to be 'fine' (curiously without any blood results included in the letter). I think it must have showed that my conversion is poor, though, as my 10mcg T3 prescription was reinstated (by this time, I had already decided that I would try Armour, though).

I never heard anything conclusive regarding the colonoscopy/endoscopy and gut biopsies (aside, again, from just 'fine'), so I'm not sure what my stomach acid or gut bacteria is truly like. I tried to chase the results, but was told that the above. I'm not in as much abdominal discomfort and my bloating has reduced since starting NDT (along with being more 'regular'), but a small part of me also wonders if I still have SIBO, too. I just can't afford to take care of it if I do, because the antibiotics alone cost me around £1,500. I will probably book a consultation with my private endo, after all - I just wish I'd done that in the first place.

[pennyannie in reply to lau99]

All this worry isn't helping you -

Yes NDT will help you as it contains T3 and T4 - and if we discount the T4 element - which clearly isn't doing much for you - and if the average person needs around 50 T3 daily just to function you are not on enough T3 yet to help restore your metabolism and give you that daily bowel movement.

You can keep increasing the NDT just for the T3 content but you'll likely need around 2 extra grains to get you to 54 T3 - but it's a more expensive treatment option than just taking T3 - Liothyronine.

I received no answers from all of my NHS investigations which really upset me as I was still believing the NHS were looking to get me better - that was 2016/18.

i started self medicating in 2018 and haven't looked back :

T3 / T4 worked for me but I treated myself to all possible treatment options and prefer NDT - and only take 1 + 1/2 grain and it seems I'm more comfortable running myself slightly hypo - if that makes any sense.

I still need to supplement daily/weekly to maintain optimal vitamins and minerals, take an adrenal glandular and vitamin C to bowel tolerance.

[pennyannie]

So, apart from your vitamins and minerals needing to be improved you are taking 4 grains of Armour split evenly into 2 doses.

So we are looking at 18 T3 + 76 T4 x 2 so a total 36 T3 and 154 T4 :

I read the average person needs to convert and utilises around 50 T3 daily just to function and believe that you are functioning on just the T3 only component of the NDT and it's likely cheaper for you to go T3 only as you are not absorbing the T4 which should be evident from the absorption test the NHS ran - do you have this result ?

The NHS owe you a duty of care and can write T3 prescriptions and your best treatment option is likely that of T3 only, with a ballpark dose of around 50 T3 daily.

[lau99 in reply to pennyannie]

That's interesting and maybe hopeful if that is the case - I never truly knew if T3 worked for me because I've never been prescribed any more than 10mcg daily (with probably too much T4), nor have I tried any more than 25mcg daily on my own.

My last thyroid report with my private endo (July) showed below-range free Ts with a suppressed TSH on 3 grains, which my endo suspected was because my body was "craving for T3" and was taking it straight to the cells. My dose was raised to 4 grains because of this. I wonder if T3 monotherapy, or high-dose T3 and low-dose T4 might be good for me, but I really do feel pretty good on NDT (minus the unresolved abdominal bloating). The cost is a source of sadness/worry for me though, so perhaps T3 would make more sense?

[SlowDragon Administrator in reply to lau99]

Would concentrate on getting well on NDT for at least a year or two before considering any other options

[pennyannie in reply to lau99]

Well many of us are without prescriptions and are self sourcing :

The TSH is a totally unreliable measure of anything especially in Graves patients.

Once a Graves patient - always a Graves patient -

We can and still have TRab antibodies in our blood years later, and they " sit on " our TSH receptor sites and falsely drive down the TSH readings - and why you can't rely on a Graves patient's TSH to tell you anything and you must always dose and monitor of T3 and T4 readings.

Imagine a brick ( Graves antibodies ) stuck down on the accelerator pedal in your car - the engine ( thyroid ) revs up and up - remove the engine ( the thyroid ) -as you can't remove the brick - does that makes any sense ?

Now without a thyroid you need to take the thyroid hormone replacement medication, though now you are on manual adjustments with no gears, nor a clutch to engage as you have lost the power of adjustment and conversion that this amazing little gland did automatically for you, as required.

My TSH was stuck down low suppressed - and I was told to reduce my T4 and refused a trial of T3 - having already been refused NDT 3 years prior by my doctor and given anti depressants instead.

This was despite the fact that my T3 was at 25% with a T4 at 100% - and this was the endo at the hospital - and I was told I was lucky to have any T3 at all - it's just totally ridiculous going around and around with ignorant presumed specialists in their field.

My results on NDT have literally reversed themselves as now my T3 is at 100% and my T4 at 25% : which I take to mean that I am able to fully utilise and convert the T4 : and there's not enough T4 left over at the end of the day to be a problem.

[pennyannie]

Whilst T4 - Levothyroxine is the easiest treatment option for the patient to manage and used successfully from many thousands and thousands of patients it does not suit everyone :

T4 is a means to an end - you can live without T4 but you can't live without T3 :

[serenfach]

Go see the bully endo, see what she says and then tell her she is sadly lacking in her knowledge if she starts on you for the NDT. It was safe for 100 years and only became "unsafe" as they could not make any money from it. If you even look at her sideways she will discharge you, so problem solved.

We should not be bullied by ignorance.