I really am losing it today and need some help as to who I contact. For the last 2 weeks I’ve had what I thought was a globus sensation in my throat but this morning I’ve woken up with a swollen, scalloped tongue so I’m wondering if that’s what’s causing the feeling in my throat. It’s wearing me down having this feeling all the time. I’ve also started spotting between my periods, I’m emotional and crying for no apparent reason, too anxious to go anywhere and I barely have the energy to dress my children.
I know I’m under medicated but my NHS endo has told me they won’t see me again for another 6 months so no dose change. I can’t carry on like this - what would you do? Is it worth trying the GP? Would you try contacting the endo again? The problem is they think I’m perimenopausal, I was going to wait until I’ve had the blood tests through the GP they said they will request but I feel like I can’t wait for however long that will take. I’m getting to the point where I’m just going to start self medicating but I was trying to avoid that. Why do they think it’s alright to leave people in such a state?!
Written by
RoseF3
To view profiles and participate in discussions please or .
I’ve had a scroll through previous posts and see that you were only diagnosed 10m or so ago. Your iron and B12 levels were pretty woeful at that time but you got told that because they were still in range albeit at the bottom all was well.
And then to add insult to injury, when you were struggling on 75mcg of levo, your endocrinologist (for reasons I don’t get at all!) decided not to raise your levo dose but to drop it to 50mcg and add 5mcg of T3.
All in all, it’s like you’ve unwittingly taken part in the endo’s private experiment. I see no reason for not raising your levothyroxine but also no reason at all for dropping your levo so much only to add 5mcg of T3. That was never going to work. And now your levo dose has been dropped again to 37.5mcg.
I think (this is just a guess mind) there are a couple of potential explanations.
One is that your iron and B12 levels (and possibly folate too) are still very low (you’ve mentioned that taking supplements is causing you digestive issues). If your iron levels are low, you’ll feel wired and jittery on T3. That’s not because you’re over medicated, it’s because you need iron levels to be decent when adding T3 (honestly not sure about the why, just something I’ve observed in myself and many others who post here). I believe it’s something to do with cortisol levels.
Another theory is that the brand of levothyroxine you were on at the point the T3 was added was one that you were sensitive to. What brand was it? Do you remember? What brand are you taking now?
It might be that T3 is not for you just yet—it could be that you’ll feel a lot better on just levothyroxine until your iron levels are better.
Alternatively you could be one of the folk who don’t fare well on any amount of levothyroxine (but this is quite rare so don’t immediately jump to this conclusion).
I can’t quite believe they’re trying to say this is all perimenopause—you’re 33. If there was evidence of that in blood tests, sure—but there isn’t is there?
Not sure you need an endo for what happens next—a decent GP (if you have one) might be more than enough. I don’t think it was a good idea to reduce your levo dosage—you are now clearly undermedicated. So that needs bumping back up again to at least 50mcg.
If your doctor won’t do iron and B12 tests it’s well worth considering getting them done privately—I’ll post some links to the companies that do finger prick tests in a moment. A scalloped tongue can be a sign of Vit B deficiencies (often B12 or folate). A blood test might shed light on what you’re dealing with here.
This is such an informative and helpful reply. I didn’t know about iron and T3.
RoseF3 it’s very hard to take control of your health when you’re feeling dreadful but it might be helpful to write to your GP setting out what’s happened and ask for a full thyroid test and vitamins. Come back again here for the good folks to give you some more advice. If the GP refuses then get another one who’ll help you regain full health. It’s hard to advocate for ourselves but really important especially as GPs are so overstretched now.
I prefer Blue Horizon and do their gold test once or twice a year (you can get 30% off for quoting the Thyroid UK code as referenced in the link). But I have used Medichecks and Monitor My Health too.
Thank you, this is really helpful - now I’ve calmed down a bit I’m going to make an appt tomorrow with the GP. I’ve not seen him before so I will find out how helpful he is I guess. And yes if they won’t do the vitamin tests I will do them myself - I clearly need to get this sorted asap.
Hope you get on ok. A tip from someone who weirdly seems to “lose it” during consultations—write yourself a list of bullet points of the things you want to mention.
It seems to be the luck of the draw as to whether you get listened to properly or not so let’s hope for a GP on a good day! I think it’s really off to try to blame perimenopause when there are clearly other issues going on. Good luck! x
Suggest you get FULL Thyroid and vitamin testing done now yourself if you have been on unchanging dose and brand levothyroxine and T3 for minimum of 6-8 weeks
all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Day before test split T3 and take last 1/2 or 1/3rd of daily dose approx 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
get a set of private blood tests so you know where you are with tsh t3 t4 and vitamins - then try to get your vitamins all up high in range especially b12 if you were deficient (and sounds like you are again).
I just reorder my Levo more quickly so I stockpile it and take extra by the way but it’s not a fortune online.
I’d add back in your missing Levo then retest in six weeks.
And you could complain to your surgery if your doc won’t help..?
What do you say when you have a checkup with the endo and you’ve added in extra t4? I’m worried he would stop treating me if I ignore his advice and take more?
I say ‘I was feeling so ill but didn’t want to bother you so decided to experiment to see if a small increase made a difference to my symptoms and it does seem to have worked so I’d like to ask to remain on this new dose. I’ve privately tested and me levels remain in range”. I go in fully prepared!
Globus sensation is usually down to silent reflux. I have had globus myself because I have silent reflux although I didn't believe it for months. Its very common with low thyroid hormones. While u sleep, stomach acid and pepsin refluxes up into the throat, airways and ears...its even been found in the eyes. It causes lots of different symptoms and is even implicated in sjogren's disease.
Does it cause tongue swelling too? I know I get acid reflux occasionally so it wouldn’t surprise me if I had silent reflux too. I’m so worried about the tongue swelling and now this morning my eyes are puffy. I feel like I’m falling apart very quickly!
I had swallowing trouble for years so bad at one point it caused severe panic attacks and my thyroid levels were always good (so they say) and eventually everything for me went off the rails.
Swelling of the tongue, face and legs are all signs of hypothyroidism, as is sore throat and hoarseness.
NICE guidance recommends starting dove of 1.6mcg per every Kg body weight. The aim is to get the results within parameters but to also treat the patient symptoms.
If you still feel rubbish then you need a review.
I felt rubbish for years and put it down to age (62) and the pandemic. I got to the point where I have now retired this year only to be diagnosed with an underactive thyroid a month later.
I would recommend seeing a GP and asking for a blood test again and request a printout of the results, twice I was told no further action was needed even though my TSH was outside of the upper range.
I am now taking 100mcg daily, I increased the dose myself from 75, I told the nurse practitioner I had gone away for a week and forgot my pills so borrowed my mums for the week and felt better on the higher dose so stayed on it. Still on the 100mcg dose, but recently have become symptomatic again.
Good luck, remember it’s your health, your body, you know how you feel, so make sure you convey how ill you are feeling when you see them. X
I dealt with dysbiosis, gastritis and reflux. Lamb liver helped me tremendously. Also, have you ever tried heme iron pills? They are more gentler and the more absorbed form. When my digestive issues was really bad I started off with half a tablet. Cut it with a pill cutter. I slowly worked myself up to 1 pill and then added another and then another until I got to 4 pills a day. Each pill had 11mg. It's not a lot if a person is deficient but better than nothing.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice please
Thyrotoxicosis PLEASE HELP
advice please
Advice regarding the Dr
Advice please
