My GP practice doesn't ask for thyroid testing every year and I don't bother about it. Just had a letter to get a blood test done for TSH so I dropped a note in the surgery asking for the FT3 as well. I get a phone call which goes " the doctor said he can't request the FT3 only a consultant can do that". Now either the laws have changed or the doc is wrong, because I've had that test via the same surgery before. Be nice to know. I'm on 75mcg and been on that for many years now. Lately I've been really exhausted, lost a bit of weight, not often hungry, could easily burst into tears, suddenly got ezcma in both ears (I don't get ezcma) it's been cleared up now by the ENT guys, and now I've got a slight cough (I don't cough either) and a strange feeling like a tight elastic band round one ankle, and often leg and foot cramps esp at night. This morning I decided to only take 50mcg, this evening I was more awake and actually hungry. Interesting. Anyone else had things like this please? Oh, I'd better add that I'm 73 and act like 50! I've never been 73 before so don't know what I should feel like!
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My surgery is the same 're the ft3. I had the whole thyroid panel done in March when i had severe thyroiditis but not since so I do it myself to keep check
Haha, I'm not doing 70 plus very sedately, we baby boomers have to keep rocking it! just read through all your info, so interesting, I've been banging on about a lymph node lump just under my left ear lobe. Most docs can't feel it! I did have a scan and they said all was fine. But it's still there, definitely larger and harder than it's right side companion. No ear infection now so it's not connected to that I don't think. Doesn't seem to be anything wrong in mouth and throat.
I'm 73 too Dot-69, same attitude as you 😉 Luckily I don't really have problems being hypo except feeling cold; but I also have hot flushes 😐; and never wake up feeling refreshed. They don't test T3 at my surgery, I get it checked with Medichecks maybe twice a year to keep an eye on things.
I have a lump at the side of my neck, 1 doc couldn't feel it but did send me for xray. Another doc could feel it but thought it was a lymph node, she did send me for a scan but nothing showed up. I've had it since May. Think I'll be going back to docs sometime though!
I nearly always feel cold too. Not waking up refreshed.... Is that the joys of being 73?? Who knows. Several docs couldn't feel this (lymph node?) lump, one told me I was probably feeling it from the inside (A??? ) It usually indicates some kind of infection somewhere I thought. I'll ask the ENT doc Friday.
Not feeling refreshed when you wake up, even if you've slept well, is a condition of hypothyroidism I read somewhere.
The 2nd doc I saw thought the same - infection, so swollen lymph node. But after 8 months I don't think so. The 1st doc I saw, who couldn't feel it but sent me for x-ray which was clear; when I went back and said I could still feel it, he said 'stop feeling it!' He was trying to be humourous because he couldn't feel it
That's what I've read. I was only diagnosed about 2 years ago but looking back think I've been hypo for 40 years! I've never felt wide awake in the morning. Well I say that; I always struggled to get up all those years ago but I do remember about 6/7 years ago (since being retired) for a while I was getting up about 8.15 (I got up earlier than that when I was working but never since retiring) and feeling fine; can't remember how long it lasted.
It is an issue sometimes. I try to go to sleep earlier. Unfortunately, my husband is a night owl and his day is all over the place. He eats breakfast at 1pm, lunch at 6pm and dinner any time from 9-midnight.
Very difficult to sleep with someone awake in the house and moving about. I am a light sleeper. (He’s unwell too, so that adds to my stresses I suppose)
Then my neighbour is up and about from 7am. I do manage to ignore the gate clanging most days, but it still wakes me up.
Sometimes I get 8 or more hours sleep. I don’t feel refreshed though.
If only I could master flying on my broom it would save some energy....🙃 (hopefully silly sense of humour will be the last thing to leave me).
As I said it was only for a short while. Now I often don't even wake up till 9.30/10.00 and find it really hard some days to keep my eyes open, it takes me about half an hour to come round. I'm usually awake earlier but too early to get up and go back to sleep. I have bouts of insomnia too.
have you tried magnesium powder before bed? can be very relaxing and help sleep. if you get a fitbit and download the app you can also see exactly the type of sleep you are having. often i find i’m still tired after e.g. 9 hours in bed anc can see i haven’t had restful sleep, whereas when having 6 hours but overall deep sleep i feel better. i know it won’t solve the issue but can help with identifying factors. i got a fitbit for £20 second hand.
i find being optionally medicated and vitamins too that i sleep better.
oh god i know. if i think about the amount of information and planning we have to do it sends me mad! at least we have each other i couldn’t fathom dealing with this alone 😩❤️
Sounds like you are well on top of it all, i really hope you get a lovely deep sleep soon. i listen to a woman called tara brach she does nice meditations.
my dad just started on the magnesium powder he says it helped his sleep last night ( he can’t use the oil or body lotion he’s got dry skin and eczema which he doesn’t tackle- he’s hashimotos too!!)
My doc certainly tested for T4, T3 and TSH for a good year before I saw an endo - and I've had no problems since - and last November the GP actually booked me in for ALL the testing that this site recommends, including Vit D, which she thought I wouldn't get.
Only a consultant can prescribe T3 meds - but that's not the same thing, is it!
I never had my T3 tested I all the time I was being treated for Graves’ disease. I pretty sure the consultant had listed it on the slip to be tested but I gather the lab technicians over ruled it.
In the end I got fed up begging for tests and paid to have them done my Medichecks- I get all the thyroid ones done plus ferritin,folates, vitamins D and B12, plus CRP and something else I can’t remember.
I’ve never told my GP I do that and I’m unlikely to do so unless/until I go out of range and can persuade my doc to act.
If you can post your test results with their ranges that will help people to comment.
Gosh, you are so lucky. My surgery now only tests tsh for me on an annual basis.
My favourite practice nurse once commented that at least T4 should have been done too. She no longer works there and she had been therefor many years - she wasn’t of retiral age though. I figured she had just had enough.
Each ccg negotiates with the primary care trusts which Laboratory tests they will pay for, therefore it varies across the country. In East kent gp’s can’t routinely request ft3, but labs will do this if TSH and ft4 are out range. The labs will however perform this test if asked for by a consultant. Hence the variability across the country.
Levothyroxine is T4 only and is an inactive hormone.
It is supposed to convert to T3 and T3 is the Active Thyroid Hormone which runs everything in our body, from head to toe and we have millions of T3 receptor cells. Therefore we really need to know what our FT4 and FT3 are (rarely tested).
Is your surgery confusing the fact that because the doctor can no longer prescribe T3, that they've taken this to also mean that the patient cannot have a Free T3 blood test? I find that confusing because even if we take levothyroxine alone - which is T4 - it has to convert to T3. T3 is the Active hormone and we have millions of T3 receptor cells and all need T3 in them. Our body cannot function if we don't have sufficient T3.
Yes I knew T4 converts to T3, didn't occur to me they may have mixed up the testing for T3 with prescribing T3. TSH alone doesn't really tell us anything. I'll ask the phlebotomist she'll know if they take bloods for T3. Thank you for that
I agree with you as my surgery seems to have also changed the method of appointments, i.e. that you cannot chose the doctor you have already seen about a particular condition or a doctor you've regularly seen in the past. It is now 'pot-luck'.
It doesn't make sense and we don't have a relationship with a particular doctor who knows your past medical history and dealt with it. Its not quite the same as someone who just reads the computer screen before you enter but maybe they look upon this as progress! Does the patient then have to tell this doctor about our past medical history, or do they just read about the last appointment or start from scratch before patient goes in. Do consultations have a minimum time now? probably.
At my last appointment I could sense a bit of animosity even before I opened my mouth. This was a doctor I'd never seen before.
A very important question I asked was dismissed altogether, so you're left wondering i.e. what do I do now? Do we continue with the problem? most likely.
He had read your records that is why. I dread to think what any new Doctor would think about me with "delusional" written on mine. Strangely enough I will be seeing the doctor who wrote this on Friday and he was supposed to be helping me. I can't wait to ask why he wrote that about someone suffering from Graves' disease!
He is no longer a GP at the practice so he won't be able to remove it but I will mention it. I might say remember me your delusional patient? He also gave my husband propranolol tablets and he ended up in hospital with a low heart rate so perhaps it is good thing he is not a GP now.
I have thyroid tested at least once a year, maybe twice. I requested T3 testing and they do this every time, so far. Maybe because my TSH and T4 are way out range.
I have had Graves' for over 10 years and not once has my GP surgery asked me to come in for a blood test ... I don't think they really care. I had thyroid storm and was admitted to hospital so did go in to request a blood test last year. My Doctor requested a full thyroid function blood test TSH, T4 and T3 and antibodies. What he got was just the TSH and for some obscure reason a liver function test. The lab saw my TSH was in range and decided I did not need any further testing. This is all because of NHS guidelines and why so many people with thyroid disease are suffering and the NHS have no intention of changing this.
I think it is very poor that medical professionals, who know nothing about the patient can make decisions which could backfire upon us. Its bad enough trying to get to a dose which alleviates symptoms, or to get a T4/T3 combination if we are still symptomatic.
Extremely common to have poor conversion the longer we are on Levothyroxine ...and the older we get
Low vitamin levels are extremely common. Ask GP to test vitamin D, folate, ferritin and b12
B12 drops as we age
Low vitamin D extremely common on Levothyroxine, especially in winter
Optimal vitamin levels helps improve conversion of FT4 to FT3
Reducing your (already very small) dose of Levothyroxine is likely to lower FT3 even further
If you are poor converter the high FT4 can be causing issues...when you reduce Levothyroxine...you temporarily get Improvements in symptoms as FT4 drops but short lived until FT3 drops even lower
Strongly suggest you remain on 75mcg Levothyroxine daily and get FULL Thyroid and vitamin testing privately first before changing dose
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Do you always get same brand of Levothyroxine?
Many people find different brands are not interchangeable
I checked back and yes they were exactly as you said, I was on vit D then the surgery said I was optimal and stopped it. I always take a good multivitamin anyway. Thank you for all the information, I'll look into the private blood tests
Too little of what you actually need, usually cheap, poorly absorbed ingredients, most contain iron and calcium which bind to all the other ingredients, plus not recommended to supplement iodine with Hashimoto's
Stopping any supplements that contain biotin a week before ALL blood tests as biotin can falsely affect test results
Oh I didn't know that! Mine are from Higher Nature, a good brand, and are called Advanced Multi and do have all that you mentioned. Am I right in thinking the diagnoses of Hashimoto's is only made if antibodies are discovered? What if the antibodies have never been tested for?
My GP will request TSH T4 and T3 for me but has aaid the lab will only test T4 if your TSH is our of range, and they should only test T3 at endo request, but she does request them for me and so far lab have always done the tests requested. Maybe ask them to please try! Good luck.
Our GP surgery is the same. I’ve been on Thyroxine over 25 years after removal of an adenoma on my thyroid. Mostly things run along smoothly but the last 18 months levels been too high so dose increased then levels too low then high again.
But GP says he’s not allowed to request T3 due to funding issues.
He did do it several months ago & they did the test which he wasn’t expecting them to. It’s crazy isn’t it?
I think I’m going to pay & see an endocrinologist to get back on track & for peace of mind x
If a doctor has a problem with their thyroid gland I think they must be more compassionate to the patient who's still struggling with symptoms. The fact too that they now cannot prescribe other than levothyroxine or use their initiative.
Surgery doesn't want to spend 95p on a test - actually, the labs won't do it - probably won't do FT4 either if TSH is in range. I'd just get my own bloods done through Blue Horizon or Medichecks. That way you've got ammunition if TSH is low
LoL I like your style! Can't offer you any advice, but I can tell you that I have been lowthyroid for over 20 years (in North Wales) and never had a T3 test as far as I am aware, but have been tested every year and had my Levothyroxine adjusted now and again too. None of it helped me though.
I am however, delighted that you have eczema in both ears!!!!!! Everyone thinks that I am imagining that something has been 'crawling around in my ears, driving me mad and itching enough to drive me insane' for many years! You are the only person I have come across who has had the same problem! All I have to help myself is sudocreme nappy cream and a cotton bud to apply it with!
Could I ask what you have prescribed for your ears please? Wonder if my dr would let me try the same for myself, if it worked it would be a great relief to me believe me.
If your ears are also flaky... Not in the sense of being daft though LOL then it could well be ezcma. If you have them micro suctioned, they should be able to tell. It sure can feel like there's something crawling in there!! The ENT doc gave me Mometasone furoate 0.1%w/w to apply thinly once a day for 2 weeks, although I did stop it before the 2 weeks, it's a steroid, I'm not partial to them really, the other thing was Betnesol eye, ear & nose drops solution 0.1% w/v another steroid. But they have both worked within 2 weeks. I hope you get some relief, don't scratch it can cause infection, I think that's what I did. Almost impossible not to. Also dry your ears with low setting of a hair dryer which will stop any possible fungal infections, which I got! Oh, and don't tell them you use cotton buds, put any ointment on the outer parts with a clean finger. Don't we live and learn?
Oh yes, I have had ear infections when the whole of the right side of my face and neck swelled up before now.
I have no idea of whether my ear are 'flaky' or not.
The right one particularly is the worst and that tends to feel wet mostly, at least when it starts itching.
But I had eczema as a child - it is a family problem which I shared with cousins and my grandmother and I often had cracks appearing, in the fold of my ear lobes which would be dry and crusty, then cracked and 'wept' periodically, but I have not had that for probably 25 years at least now. The family would often tell me how I was a 'purple painted baby,' because I had infantile eczema which I fortunately grew out of mostly.
I have never heard of 'micro suctioning'???? And my doctor never thought that it was necessary for me to go see an ENT consultant, though I often thought that if only he could experience that incessant itch, I better he would have referred himself to someone somewhere pretty quickly!
No, I know their views on cotton buds and ears, let alone my sudocreme! I try to keep myself sane, that's all and never touched my ears with a cotton bud in my life until this itch all started years ago!
I can't seem to get the cream down inside my ear without a cotton bud, my finger tip can't reach! Fat fingers!!!!
I will take your medication details off to the doctor here very soon and see if I can talk them into prescribing something that will work and isn't basically a 'nappy rash cream!'
Micro suctioning is the new ear syringing, NHS don't usually do it but having said that, I was given an appointment with another practice for that, but cancelled when I had a faster appointment with the ENT guys and that doc did it, basically a quick vacuum of each ear. I'd push for ENT I've no idea why they try to avoid that, I was told it would take months, I was seen within 1 month at another local surgery, letter came from the Queen Victoria hospital, East Grinstead. Before that I had to call 111 because of the infection, that doc suggested ENT and I told them that, so I pushed for it. Ear infections are too close to the brain for comfort. Don't leave it though. All the best
I developed itching all over my body when I was undergoing chemotherapy. Tried lots of things. Finally figured out, due to no visible rash and feeling this all over my body, that my problem was nerve damage. I now take Gabapentin 3 times a day.
But I have found some itching relief from lotions containing lidocaine. Basically it numbs the nerves for a while.
Lidocaine ear drops are used for the treatment of painful ears. Lidocaine ear drops have anaesthetic properties and reduce the amount of fluid of the outer ear canal.
I will hopefully be seeing temporary GP (I am not staying at home at the moment I'm 130 miles away from my local gp) next week once I get the printout of my previous Blood tests which I have never seen before! I have a list a mile long of blood tests- Thyroid and vitamins - that I hope he will agree to, if not I shall do those privately.
Then for my itchy ears I have two options for ear drops which another member uses for my same problem I think, and I can mention your options too if he won't give me what I need.
The local anaesthetic would be marvelous, woke up at 1 am this morning freezing cold, but right ear itching and hot! It drives me mad. But if I can stop the excema in it's tracks that would be the best!!
And I haven't been able to sleep again since - cream crackered now
I think it is up to the individual GP. I had mine done regulary at my previous GP, moved to another practice under same CCG and told they dont do it, moved again to another practice and GP says they do do it. I think GPs spend a lot of time saying they cant do things these days. I think they are under pressure re budget so say that all sorts of things are not available and if a GP is not very thyroid friendly they will say no to T3 testing.
It seems a lot of tests that GPS were able to do in the past can’t do them now. It’s all to with money. I had to have a MRI and GP couldn’t request it as only consultant can so had a referral to a specialist in hospital and waited months as no appointments were available with the specialist. It seems to be the norm these days with my local hospital.
I’m on thyroxine for underactive thyroid all they do is TSH and thyroxine level together with FBC cholesterol and u&es once a year.
If they would give us the tests we need and treat us accordingly, they would not have to pay for all the extra tests for high cholesterol, treatment for diabetes, etc.
GPS can do the usual every day tests like diabetes screening cholesterol u&es full blood count X-ray etc , it’s the high cost tests like MRIs etc they can’t do
They even ball at referring to ENT so I'm assuming it probably cost then to refer patients. At least I've got the all clear for my ears now at long last. If I'd have been given the right stuff from the docs in spring it would have been fine!
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That's what I've read. I was only diagnosed about 2 years ago but looking back think I've been hypo for 40 years! I've never felt wide awake in the morning. Well I say that; I always struggled to get up all those years ago but I do remember about 6/7 years ago (since being retired) for a while I was getting up about 8.15 (I got up earlier than that when I was working but never since retiring) and feeling fine; can't remember how long it lasted.
TSH, FT4 & FT3 normal! (?)
Blood Test ft3 ft4 TSH - Round 2
Low FT4, Normal TSH, Fluctuating FT3
Under range T4 -TSH and very low FT3
