Been taking T4 Levothyroxine for around 20 years and self-medicating with T3 Liothyronine for around 3 years.
I‘m finally seeing an NHS Endocrinologist tomorrow, Tuesday, at Worthing Hospital (W Sussex Trust). My first ever Endocrinology appointment - and I’m nervous!
My GP organised the blood tests attached (see image), which I received tonight.
I followed all the usual Thyroid UK recommendations before having my blood drawn.
I see there are two Abnormal results for FT4 and TSH, so I would appreciate any hints and tips you can give me for managing my thyroid - and for managing the endocrinologist tomorrow!
I also asked my GP to run a test for the Perimenopause, as I’m 43 and over the past year my periods have been regular but longer and heavier.
My thyroid symptoms also become crippling in the week running up to my period - all-over physical fibromyalgia pain and dead-head scattiness in particular.
But I have no idea what my particular hormonal results mean on the sheet attached. Is anyone able to interpret them for me?!
Ideally, I would like to come out of my Endocrinologist appointment tomorrow with the following -
1) To have T3 Liothyronine officially prescribed on the NHS
2) To be prescribed an increased dose of thyroid meds for the week before my period (so to titrate up for one week a month before titrating down once I start bleeding - which is when my extra hypothyroid symptoms are naturally relieved)
Any assistance in preparing for my endocrinologist appointment tomorrow will be very gratefully received: please explain to me what my blood results mean, and as a result what care to request from my endocrinologist - and/ or what potential NHS pitfalls to navigate. I’m very aware that self-medicating T3 is unlikely to endear me to the endocrinologist!
I take:
75mcg T4 levothyroxine in the morning with 25mcg T3 Liothyronine.
And 25mcg T3 Liothyronine in the evening.
I follow all the timings and dietary recommendations of Thyroid UK.
Many thanks in advance for your help - I need all the specialist input I can get in order to make the most of my endocrinologist appointment tomorrow. T3 has changed my life and for many reasons I would love to be officially prescribed it by the NHS!
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Your TSH is low because you're taking T3, that's just what it does.
Your FT4 is low, partly because taking T3 tends to lower FT4 but I would also think you're not taking enough Levo. I take a combination of Levo plus T3 and I need my FT4 well in range as well as FT3, your FT4 level would make me very, very unwell. However, we are all different as to where we need our levels, it's very individual and we have to find our optimal levels ourselves.
Your FT3 is 55% through it's range which may be OK for your, some of us need it higher.
B12, folate and ferritin may all benefit from being higher. Recommended levels are
B12 - top of range for Total B12
Folate - at least half way through range
Ferritin - half way through range
However, as far as doctors are concerned they just want to see them within the range for them to say levels are fine, doctors have no concept of optimal levels or that hypo patients need optimal levels.
I'm afraid I can't help with your sex hormone results.
If I’m honest I’ve been feeling pretty terrible for the past year, which is partly why I want to get tomorrow right while I have the opportunity. So I very much appreciate your thoughts on the matter!
With this in mind, going by your suggestions I need to ask the endocrinologist the following:
1) More T4
(any thoughts on how much more? I currently take 75mcg and have been asking my GP for more already, so having the endocrinologist onside would make a real difference)
2) More T3
(as above!)
Is that right? Did I understand correctly?
I will go back on the B12, Folate and Ferritin supplements. Thank you.
Levo dose should only be increased in 25mcg increments. So maybe ask for 25mcg tomorrow, retest in 6 weeks then reassess. Depending on where your new level is - test both FT4 and FT3 - then you may need more Levo. You can always fine tune with a dose lower than 25mcg.
Raising your FT4 may, depending on how much natural conversion you do have, also raise FT3 so I would hold fire on raising FT3 until you get a decent FT4 level. You can't change both at once anyway, you have to do them individually then see how you react to the dose change, that's the only way you can tweak the doses to find your own individual needs. If you do find you need more T3 then that should be increased by 1/4 of a tablet, no more, until you see what your new level is and how you feel.
Did you not have Vit D tested? That's important too.
OK, great. I suspected I might need more T4 so will definitely ask for more today, starting at 25mcg. Thank you.
No, my GP didn't test Vit D, only the above. However, it getting towards winter I usually begin to supplement shortly anyway. so I'll start now! Thank you again.
Hello. It sounds like you are probably entering perimenopause. Periods changing in any way is a huge clue. Blood tests are so unreliable because our hormones are whacking up and down all over the place at this time. I can't see any test results on your sheet above for them, but even with them, it's hard to say and should go off symptoms really.
When I was younger and in peri my periods got very heavy and extremely painful. I had a Mirena coil fitted and it changed my life. My periods stopped after a few months and once my body got used to the coil I felt great. That took me through to menopause and I now use oestrogen with the coil. If you are in peri you will be experiencing months when you don't ovulate and therefore don't get the progesterone you used to get. This is part of the issue with the heavy periods and changing lengths and also with mood swings. But I really don't think you should try to alter your thyroid treatment for that week. That's not the right way around. Instead you need to talk to your GP about your peri situation and ask if they will give you a coil to try or some other HRT product. Your thyroid situation might improve with better sex hormone balance.
Some GP's are OK with HRT others not. So ask to see the GP who has an interest in it at your practice and see them to talk to. Or, consider going privately to a specialist if you don't want to wait.
I agree with what you say about sex hormones! My periods got much less heavy when I was put on HRT - Oestrogel (bio-identical estradiol) along with Utrogestan (bio-identical progesterone). They also went from lasting a whole week to 3-4 days at most. Could be worth a try.
This is all great info, FancyPants54 Thank you. Really thoughtful of you to share your experience.
Un/fortunately I have two wombs(!) and two cervixes(!!) (it’s called didelphys uterus bicollis) so although generally I have a normal period, it means I can’t use the coil. In fact, my OH has had The Snip!
However, I can feel my hormones are changing and I definitely need help: my mood swings have been increasingly worse - despite anti-depressants in that half of the month - and as I said below I now bleed over a week each month. Too much!
So I’ll ask my GP about an alternative to the coil - and whether there’s a mild HRT I can use.
Wow! I didn't know that was possible. You are unique
The coil is no good for you. As ASanders said above, the best HRT is body identical and that is 17 beta estradiol in either gel or patch form and micronised progesterone called Utrogestan. The Utrogestan is a soft gel capsule. Many of us get bad side effects from it taking it orally, so we take it vaginally. It's not licensed for that use in the UK, so no GP will tell you to do that. But it is licensed that way on the continent and many of us in the UK do that. I couldn't swallow it, but I was fine with it vaginally. Except I just wanted to have less to think about so went for the coil instead and I love it.
If you have a patch or gel for the Oestrogen, you can start on 1 pump of gel or a 25mg patch. Those are low doses. Then if you need more you either increase the pump to 2 pumps or go up to a 50 patch. It's a bit like thyroxine, goes up in 25mg patches. I am currently on the patch. I found the gel didn't last all day for me. But a lot of women love the gel. It's so versatile.
If you want to know more in general about perimenopause and treatments etc I suggest you go to the menopausedoctor.co.uk web site and have a read. It's a wonderful resource of up to date information.
Yes, everything I mentioned is available on the NHS. Don't apply gel vaginally!!! It's the Utrogestan progesterone capsules we use vaginally. Get into bed at night, pop one in as far as you can get it and the job is done. If you tried to put gel anywhere near the vagina the sting from the alcohol would launch you to the moon and back!
It can be hard to get a GP to help during peri. But if you find a good one it's possible and if you can't find a good one ask for a referral to an NHS menopause clinic. The wait is long, but most of us have one somewhere. Or there's private.
And if you can't get on one because there isn't one in your area, then there are private clinics. The web site I shared with you is run by a lovely ex GP and her team and is in Stratford. It's really a pleasure going there. There's a page on there with other doctors in different areas listed. Anything prescribed by a reputable private specialist should be available on the NHS. Typically you buy your first lot from the clinic to get going and they write to your GP telling them what they have prescribed and why and asking them to carry on prescribing it for you on the NHS.
Peri is a difficult stage. HRT can be difficult in that time too because of your body's fluctuations, but it still helps not to let the symptoms build up and become more of a problem later.
2) To be prescribed an increased dose of thyroid meds for the week before my period (so to titrate up for one week a month before titrating down once I start bleeding - which is when my extra hypothyroid symptoms are naturally relieved)
I'm afraid that just wouldn't work. If you're talking about levo (T4), it takes about six weeks for any increase to take affect. You don't feel it just after taking it. And, by then, you'd be coming up to your next period. Trying to work out when to take an increase so that the effects coincide with your period would be impossible, because there are so many variables.
If you're talking about T3, that is also a bad idea. T3 only works if you take a steady, constant daily dose. You can't chop and change doses, it wouldn't help and could make you worse.
So, the solution is an increase in dose, but for every day. If you optimise your thyroid hormone levels, periods should calm down.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Hi SlowDragon , thanks for your response. I haven't been diagnosed with Hashimoto's, and it's never been mentioned to me. But then I've only ever seen a GP for thyroid management so that may be why!
I also haven't had the Vit D test, but usually start supplementing around this time of the year so will start tomorrow. Thank you.
However, I have eaten gluten-free for nearly 20 years. By all evidence (aside from the actual test!) I'm coeliac but worked it out myself - and by then it was too late to be tested. Gluten makes me super-sick: from flu-like symptoms to terrible brain fog, diarrhoea and increased chronic pain. So I'm already very strict on gluten, and barely touch dairy either - especially as my kids are both allergic.
So as you are gluten intolerant (or coeliac) you were always going to need the addition of small dose of T3
Vitamins need supplementing continuously when gluten intolerant. Highly likely you have very low vitamin D if you don't supplement EVERYDAY. Possibly slightly lower dose in summer (but not necessarily).
Do you take magnesium supplements? Often low when gluten intolerant and especially when vitamin D is low too
On T3 we need to keep vitamin levels optimal. That frequently means supplementing vitamin D, vitamin B complex, magnesium and vitamin K2 Mk7 and vitamin C everyday
Iron needs testing regularly if supplementing
Other vitamins that might need supplementing are extra B12, zinc, selenium
Remember to stop taking any supplements that contain biotin (e.g. Vitamin B complex) a week before any blood tests
All thyroid tests should be done as early as possible in morning and before eating or drinking anything other than water. Last dose Levothyroxine 24 hours prior to blood test and last dose T3 roughly 8-12 hours prior
Optimal vitamin levels
Vitamin D at least over 80nmol and around 100nmol may be better
Folate at least over ten
B12 at least over 500
Ferritin at least half way through range
Don't be surprised if endocrinologist only looks at TSH, and doesn't consider FT3, FT4, vitamins or gluten intolerance.
Even endocrinologists that prescribe T3, very often still don't understand the gut connection, gluten intolerance and link to low vitamin levels.
Autoimmune thyroid disease is as much a disease of the gut as it is disease of the thyroid
Ask for both TPO and TG thyroid antibodies to be tested and ultrasound scan of thyroid
20% of Hashimoto's patients never have raised antibodies
Thank you SlowDragon - Hashimoto’s wasn’t even mentioned today (see full run-down of endocrinologist appointment below)!
And since coeliac disease is another thing I don’t have a clinical test result for, I don’t know if it would stand in terms of support for my T3 case for the endocrinologist. But I’m intrigued coeliac disease has such a strong link with needing T3. Thanks for taking the time to explain this.
I will increase my vitamins and minerals as you suggest - thank you - and increase my T4 by 25mcg.
You mention that periods are getting longer and heavier, and suggest perimenopause might be the reason. You might be right. I don't know anything about sex hormones.
Another possibility is that your iron is too low, but you don't have enough information available about your iron to be sure one way or the other.
Your ferritin (iron stores) is 44 (15 - 200) which is roughly 16% of the way through the range. Many of us feel best when we have ferritin levels which are roughly 50% of the way through the range or a smidgen over. Mid-range for the reference range you've quoted is roughly 110 and a good level for ferritin would be (for your ref range) up to 130 (ish).
However, your results are rather contradictory. Your haemoglobin is not too bad. And various other parameters that are affected by iron level are also "not too bad". As a result of this I would definitely say you should NOT launch into taking iron supplements. It is possible to have low in range ferritin or even below range ferritin and have a healthy serum iron level. The patient might end up after taking supplements with ferritin remaining low and serum iron going sky high - and this must be avoided.
Your MCHC is below range. You can read up about it here :
It would be a good idea to get an iron panel done. I think we can safely say your GP is likely to refuse since the only below range result in your Full Blood Count is the MCHC. You can get a finger prick test done :
An alternative to getting your iron tested is to improve the iron content of your diet. The iron in the cheaper iron supplements is not the same type of iron that is found in food, and some people manage to absorb iron from food better than from iron salts in supplements. Some of us manage to improve iron levels by eating 200g of liver once a week. You might find this link of some use too :
Thanks humanbean for your input. Much appreciated.
I'm actually taking iron tablets - ferrous fumerate from my GP - already, and have been for about 2 years on and off (only 'off' because I take so many meds daily I tend to forget the ferrous - especially as iron tends to stop absorption of everything else).
I have a broad diet including medicinal liver (which I'm not so keen on!) so I'm not worried about the diet side of things: I eat really well. Especially as I cook everything from scratch (the kids are allergic to everything!).
However, I could be more consistent in taking the ferrous fumerate as it's definitely been working: a couple of years ago my iron levels were through the floor, and I have no wish to feel like that again!
With this in mind, should I perhaps continue with the ferrous fumerate tablets?
I’m just back from my endocrinologist appointment at Worthing Hospital, where I saw a locum rather than the consultant I was scheduled to see.
I told the locum my thyroid history - including sourcing T3 from abroad for the past few years.
He was accommodating but fairly nonplussed, saying that pretty much nowhere in Europe did they prescribe T3, and you’d be hard-pressed to find it prescribed anywhere further afield too (he was foreign, so I assume he was speaking from experience working as an endocrinologist abroad).
*However* once I’d mentioned my brother’s positive DIO2 gene test the locum became open-minded to prescribing me T3 *if I had a positive test result myself* because he said it would be clear he had a viable reason. I think he was basically covering his a**e and needed a paper trail. He said he’s never prescribed T3 otherwise.
In the meantime he’s going to request my GP continue to prescribe me T3 until my next endocrinologist appointment (presumably with someone else since he’s the locum), and he also wants my GP to arrange a DIO2 test - although he doesn’t know how that’s possible as he’s never requested a DIO2 test on the NHS before. But still, he’s requested it.
I asked what would happen if the DIO2 test was negative, and the locum said he supposed I’d continue to take the T3 anyway, even if it were. And I said yes, absolutely: I would keep taking the T3 as it had improved my thyroid symptoms by 70% and my husband and I would never go back there again. It was sheer hell!
I then reiterated I didn’t want to be acting like a bodybuilding drug taker anymore and buying essential medication from an untrustworthy source anymore. Which he understood, but I’m aware it would leave me in a kind of no-man’s land again... So I’m not sure what that would mean - especially since he’s a locum and is unlikely to be there in 6 months time for my next appointment.
Similarly, I asked for more T4 but he wouldn’t give me any as my TSH was low and he was concerned about increased risk of osteoporosis etc (this is despite evidence to the contrary shared by @SlowDragon in my previous post
I didn’t want to rock the boat and push the T4 aspect too as the locum was extremely amenable. Plus T4 is much easier to get hold of than T3, so if I have to go the self-medicating route again - but with T4 - I’m not so worried!
So all things considered, I suppose really that today couldn’t have gone any better: the locum listened, was open-minded to T3 but very aware of the constraints of his position and within the NHS, and has recommended my GP prescribe T3 - at least for now - due to my brother’s positive DIO2 results (even though my brother doesn’t have thyroid issues himself!).
In terms of periods and Perimenopause and hormones, the locum endocrinologist just shrugged. So I think I’ll go back to my GP for that one.
Since I still feel awful despite T3 (but also much better than I did on T4 alone - it’s all relative!), as suggested above by @SeasideSusie I’m now wondering if I should start self-medicating the additional 25mcg T4 myself from tomorrow morning? I have extra/ spare T4 from India I could take. Your thoughts, as ever, would be appreciated.
pretty much nowhere in Europe did they prescribe T3
Well, I've had it prescribed in France, and they must prescribe it in Germany because they make it. So, I think he's got it wrong, there. Certainly in Greece they prescribe it.
That’s exactly what I thought! I remembered the whole Greek T3 shortage.
I even mentioned NDT - and the medication I found in France which combined T3 and T4 (but the tablets were made of wheat, which was so frustrating)! But he was very dismissive.
Well, just goes to show how much he knows! I do wish they would give patients credit for some intelligence, at least enough to know what's going on around them!
In the meantime he’s going to request my GP continue to prescribe me T3 until my next endocrinologist appointment
If you haven't already got an NHS prescription for T3, then my understanding is that it has to be initiated by an NHS endo so I doubt your GP can give you an NHS prescription.
he also wants my GP to arrange a DIO2 test
I don't know if that's available on the NHS, if not you may have to do a private test.
I’m now wondering if I should start self-medicating the additional 25mcg T4 myself from tomorrow morning?
If they were my results that's what I would be doing.
Since the NHS endocrinologist is requesting the prescription from my GP I’m hoping this is viable?
I don't know for sure but I'm doubtful, my understanding is that initially it has to be provided by an NHS endo. SlowDragon may be able to clarify that.
The only CCG area that has done DIO2 gene test on NHS is in Kent. So it is possible.....but highly unlikely you would get tested on NHS
NHS will only fund T3 initially 3-6 months trial via NHS hospital pharmacy on written request of NHS endocrinologist. After that, assuming test goes well, endo writes to GP explains why you need T3 and ongoing prescriptions and cost is transferred to GP. Annual referral back to endo
In other words.....loads of almost impossible hoops to jump through
Data showing Liothyronine prescriptions by CCG area
Thank you for that update - definitely of interest.
I'd like to make a point about the DIO2 justification for T3.
Yes, I do think that DIO2 variants are likely to mean some people can see a justification for T3. But we are still in the early years of understanding genes and variants. I wouldn't be at all surprised to see many more gene vartiants which would also indicate requirement for T3. Trouble is, people with those other gene variants will probably get refused because they do not have the known DIO2 gene variants. Not because they don't need T3.
Whilst being able show a DIO2 test would be a godsend to some, it could damn others never to get the T3 they need. You only need be in front of an endocrinologist who considers DIO2 in the same way as they do TSH - test trumping presentation.
From my point of view I'm not surprised the endo. didn't have a clue about perimenopause. I don't think they ever deal with that sort of thing. I've never heard of one. Even run of the mill gynaecologists know very little and give even worse advise.
I made an appointment to see a female GP and she was helpful: since I can’t use the Mirena coil to get me through the perimenopause) which they usually recommend, apparently) I’ve been put on The Pill to help with the hormone side of things.
Never thought I’d be back here as I bloody hate The Pill, but 2 years of Peri symptoms with no support whatsoever has changed my mind. I told the GP I’d do - or take - *anything* to help the situation, and lo and behold I did. Despite myself saying I’d never take The Pill again. Ha!
So we’re monitoring it closely and if this particular Pill doesn’t work I’ll try a different one, and again, etc etc. Anything to have some relief!
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