I finally have my ‘Second Opinion’ NHS Endocrinology Consultant tomorrow after it was put back a few weeks.
The first Endocrinologist (who I’ve been sent to a few times now) utterly disagrees with me taking T3, and has made her displeasure clear in person and in her letters to my GP.
I am currently taking 125mcg T4, and 18.75mcg T3 split into two daily doses (overall, 2/3 of a 25mcg tablet of T3).
I need to fully understand the following so that with the Second Opinion Consultant tomorrow I can defend taking T3!
Test Range Result
TSH 0.27 - 4.2 0.02 mIU/L
Free T3 3.1 - 6.8 4.1 pmol/L
Free Thyroxine 12 - 22 12 pmol/L
Thyroglobulin Antibodies 0 - 115 21.9 kIU/L
Thyroid Peroxidase Antibodies 0 - 34 9.6 kIU/L
Ferritin 30 - 150 122 ug/L
B12 Active 37.5 - 188 54.3 pmol/L
Vit D 50 - 250 66 nmol/L
(^ I can see my B12 and Vit D is low)
CRP HS. < 3 12.3 mg/L
(I was ill when I took the test but couldn’t afford a retest once I’d recovered)
Thanks All
Super-nervous about tomorrow and ready to be let down by the Consultant. Again. Argh!
Abi.
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Is the consultant you are seeing tomorrow on the Thyroid UK list? I would have advised picking one of those to be referred to for a second opinion.
Your TSH is one point from being suppressed. Most NHS Endo's prefer TSH to be within the normal range, which in turns means that person is unwell and under replaced.
Your FT4 is terribly low concidering you are taking 125mcgs Levo. When did you stop taking it prior to the test?
Free T3 (fT3) 4.1 pmol/L (3.1 - 6.8) 27.0%
Ideally your FT3 should be at 60-70% of the range but also your FT4 would likely need to be at a similar percentage for you to feel well.
What supplements are you taking?
There's no folate result.
If you added a decent B complex that would likely cover you for both B12 & folate. I will list 3 that you could pick from.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Thank you Jaydee1507 for your comprehensive reply.
I’ve felt awful for ages; listless and brain-foggy, tired and run-down. But I have so many interconnecting health conditions it’s hard to know what’s what. I’m not convinced 125mcg T4 is enough, though; it doesn’t ‘feel’ right.
Thank you for the list of vitamins. I’m someone who goes in and out of the habit of taking them, and I have been ‘out’ for some time! So thank you for the nudge.
My folate test didn’t work apparently, so Medichecks gave me a refund for that bit!
My GP was brilliant and asked her ‘insider’ medical contacts to suggest a sympathetic consultant to no avail. Then the appointment was changed so many times I can’t remember who the original consultant was.
Thanks greygoose - I absolutely understand where you’re coming from. I’ve been taking T3 with the help of this forum for about 5 years now, so this is after longterm use.
I wonder if my previous bloods earlier this year might help?
No, none of those help because you can only tell how well you convert when you're on T4 only, by comparing FT4 and FT3 tested at the same time. So, unless you have those from when you were on levo only, there is no way to prove that you are a poor converter. All these labs are just saying that you are on T4+T3 and are under-medicated.
Well, he'll probably deny that you are under-medicated because both thyroid hormones are in-range - even though the FT4 is scraping along the bottom of the range - and the TSH is suppressed. He might even want to reduce your dose due to that low TSH! Depends on the person and his level of thyroid knowledge. Very few of them understand the needs of hypos.
Yes, like they're going to do comprehensive labs on the NHS! Sigh. Anyway, at least she listened, which is something, I suppose. Don't you just want to slap them round the chops with a wet lettuce!
I meant to ask, greygoose - the endocrinologist wants to take my bloods 4 hours after I take my morning T3 (usually around 7am) so she can better see how T3 affects me.
It seems entirely sensible, but what are your thoughts on this? Could it backfire on me in terms of my bloods looking over-medicated at that time of day, or have another negative effect on my bloods?
Testing after four hours does not show how T3 affects you, she's just setting you up for a reduction. Like any blood test, it will just show what you have in the blood - the FT3 result, won't affect the TSH - and four hours after taking your dose it will be pretty high. I suppose it might show how well you absorb it, but you can tell that, anyway, with an 8-12 hour gap.
No, I would be very wary of this ploy, if I were you! They don't know how to interpret blood test results, anyway.
I wouldn't even do that. Just test as normal. Your excuse is that if you don't do things exactly the same every time, you cannot compare results to see your progression.
Thanks greygoose Just to clarify - by ‘as normal’ you mean only take the T3 the night before like you usually recommend, and not in the morning at all?
100% agree HealthStarDust - but then that would be too much like common sense to cross-reference blood test results with symptoms, wouldn’t it?!
You’d think they’d take symptoms into consideration far more than they do. In fact, thinking about it, I don’t think I’ve been asked about my hypothyroid symptoms since 25+ years ago when I was first put on T4!
They don't even know what the symptoms are, and care even less. They do not want to diagnose and treat thyroid problems and especially not with T3. It's too much like hard work!
It terrifies them! They really don't like prescribing it because they know nothing about it. They have weird ideas like it's a placebo, or a stimulant, or something equally stupid. Tell them it makes you feel much better and they'll come out with something rediculous like 'cocain would make you feel better, but I'm not going to give you that, either'.
I've had doctors say out-right that they don't know what T3 is nor how to dose it, nor how to interpret the blood test results. One doctor, when I asked him for T3 said, 'what's that? T3 is something to do with hyperthyroidism, isn't it? But you're hypo'!!! I insisted and he finally looked it up to find out what it was!
Plus the fact that they really don't care how you feel. They've been taught that hypo is no big deal and we're all a bunch of hysterical women exaggerating our symptoms. Or else it's 'all in our heads' and we're a bunch of psychos!
That’s my point. There’s no point trying to cross reference them, and best to just give blood tests the total insignificance they deserve for treatment purposes and forcing them to actually hear it’s about symptoms even if one doesn’t go into them is potentially more effective of keeping the focus on relief of symptoms irrespective of tests. Trialing things for example. Works for every other disease!
Put it this way, perhaps the only way to beat them at their game is simply to destroy the game rather than learn the rules or how to bend them.
Both patients and medical professionals would need a lifetime pf scientific study to figure symptoms out. Useless for the present moment. Trail and error approach is sometimes all there is, and taking them on a journey of that collaboratively as far as possible (it doesn’t have to be perfect) is I’m beginning to think the only way.
In some ways due to other battles over health difficulties pre thyroid issue has somehow put me in good stead for some of this journey. And, I am determined to not make the tests the priority in my health needs. They are not a perfect science. Sure, nothing is, but why would I want to risk my health any further on that premise? That’s fair compromise. Happy to have tests, not happy enough to make decisions solely on them alone.
T3 is not the only medication that’s been lifechanging; HRT was too, yet I had to fight for it for 5 years DESPITE all my symptoms correlating perfectly with the perimenopause! Infuriating.
I certainly would not "bin off the NHS." There's no way I could've funded the treatment I've had over the years. It runs into hundreds of thousands.I would however get a thorough review of clinicians skill in recognising signs and symptoms. The skill set of NHS Endo in effective treatment of Hypothyroidism is appalling low. The bias against T3 is nonsensical and illogical.
I would get rid of the massive admin middle management team that dominates the NHS and drains it's funds. It's like a cancer ever growing and swallowing it up.
Clinicians have less and less power to make clinical judgements..... there's increasingly a one slot mentality. The drug restriction was first put in place to prevent harm, now used as a way of saving money by restricting drugs to ever narrowing window.
Lastly would look at joining up different departments so that patients are seen/treated as one whole person not multiple parts where the risk for each department to propose and give contrary treatment for another 'part' runs high....
Sorry no can do. I retired in the summer from my job & am glad to be out of it all tbh. I worked for a LA as a specialist teacher.... Cuts everywhere, bankruptcy rearing it's head in all directions. Who needs the stress. I'm afraid it's government that's brought us to our knees & bogus ideas in the thyroid world that's led to such rubbish treatment. Xx
My friend has just retired as a head teacher! She’s had enough too ☹️ I spent 30 years in the NHS as a registered Learning disability nurse! Not so much as a thank you ☹️
That's dreadful! My team were great and as two of us left together we had a lovely send off except for the boss who refused to make a speech saying she had nothing to say. I worked for them for 18yrs, my colleague 20yrs......we both thought, yep we've made the right decision!
That’s terrible Doris11 and waveylines - not that we didn’t already know it, but the world is completely upside-down in terms of effort extended, the amount of love put in and the pay earned. It’s so upsetting. I feel for you both. And for your headteacher friend!
Abi, could you write a list of how, and where in your body, you have benefitted from taking T3? A list would prompt you to explain your needs for T3?
My GP was amazed when I said that during the time I was taking the lower dose of Levothyroxine, as they wished, it made me feel that my life was not worth living. I was in too much physical pain. And that eventually I had upped my dose back to where I knew I had previously been stable, moving easily, and coping well with my house and garden.
After 6 weeks back on the "right for me" dose, the pains had gone. What I had been told was arthritis in my leg bone....disappeared. Knees not so desperate for steroid injection. Not needing to use a stick to move from one place to another.
I know the difference for me.... and as sure as eggs are eggs, no one, no matter what medical training they have, lives in my body as I do.
Something similar that you have noticed may be of help to you in fighting your corner?
Breathe deeply, surround yourself with calm, and say what you need, and why. You can do this
Hello,I was told by the first endocrinologist I saw that all my symptoms, (which I had checked on the ThyroidUK symptom checker), as recommended by folks on this forum, were due to Vitamin D!!!!!!
Then, when he wrote to my GP he had gotten all the facts wrong including blood test results.
I could have been reading someone else's notes.
Needless to say, I refused to see him again, and requested an alternative endocrinologist, which has, thankfully, happened. However, although she seemed to be on the same page as me at my first two appointments, at the third appointment, recently, according to the response on here, she is prescribing T3 incorrectly.
The fight goes on...
I hope you have success with your endocrinologist.
Serious question: however, do you manage to split your 25 mcg liothyronine tablet so accurately, and successfully? I struggle, splitting my 20 µg one into four.
I used to use a pill cutter, but actually it was harder getting it lined up than just breaking it into four by hand.
So now I’ve taken off the the pressure and decided that it doesn’t have to be a perfect quarter, I just break in half; then that into half as I go along. So the quarters are uneven but consistent!
And I still get the full dose over 2 days (I take half in the morning and quarter at night), it’s just not ‘perfect’. I’ve discovered perfection is crippling and it’s something I’ve worked hard on not encouraging in myself. If that makes sense!
As a lifetime perfectionist, I totally understand! We’re our own worst enemy. Thanks for your answer. I’m sure my pill is far too small to break in my hands. ( I split mine into four with a cutter and actually have accepted that they are not all perfectly even. That’s progress for me!)
I'd say your active B12 looks low and I'd test for pernicious anaemia before taking any supplements. Absorption may well be a problem as your Vit D is low and I suspect your folate will be too, which is common amongst those with PA. Worth posting on that forum for advice about the tests you'd need.
Thanks Mixteca I wouldn’t be surprised if you’re right about the B12. I try and take sublingual vitamins because of the potential absorption issue. I didn’t know there were specific tests, though; I’ll look into it!
There are specific tests for PA and results will be skewed if you're taking B12 supplements (if my memory serves me correctly - others can advise). You may end up on injections if you're deficient, so now is your window if opportunity in which to find out. I was refused certain tests on the NHS and now regret not paying for them before I started treatment 😟
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