I have just had a long telephone consultation with a Dr and it’s left me so frustrated I’m in tears.
As a little catch up; I am long term Hypothyroid and my recent bloods are showing;
TSH 0.05 range 0.27 - 4.20
T4 Total 108.0 range 66-181
Free T4 18.6 range 12.0-22.0
Free T3 4.32 range 3.1-6.8
Antibodies are normal
Cortisol is raised
My Doctors are blaming the menopause and telling me I’m over medicated all of a sudden.
I followed all the great advice I was given here and presented the Dr with the evidence that TSH alone is not enough evidence to reduce my Thyroxine dose, which is what they are doing.
He wouldn’t listen to me and constantly harped back to the TSH. I read him the NHS own recommendations with TFT which states;
“However there are notable exceptions when serum TSH concentration alone may not accurately reflect thyroid hormone production. This is most frequently encountered when the homestatic mechanism has been impaired by long standing primary thyroid disease or the pituitary-thyroid axis has not reached equilibrium following changes to thyroid therapy”
I quoted Dr Toft. I told him that NICE guidelines recommend measuring FT4 and FT3 when the TSH is below reference range.
He wouldn’t acknowledge any of it but instead kept referring to the TSH showing I’m over medicated.
I told him of my aching joints, tiredness, weight gain despite daily exercise and low sex drive.
The conclusion? Stay on reduced dose and test bloods again in 2 wks.
I’m so fed up. Sorry to rant but needed to vent to people that understand.
Much love 🙏🏻
Written by
M1ssmolly
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It annoys me when doctors blame everything on the menopause. I was told my symptoms were the menopause when I was 48 and it took a further 2 years before I was diagnosed with hyperthyroid! I actually didn't go through the menopause until I was 55. The only thing I can suggest is that you self medicate which is a last resort but you are fighting for your health now and your doctor is not helping you. Mine has never helped me either and goes by just the TSH and has told me he must stick to NHS guidelines or he would be struck off. This is the same story all over the UK unfortunately.
Me too I nearly died of thyroid disease because of the medics claiming it was the menopause. It’s a lazy, convenient, excuse for practicing poor medicine.
What a cheek, I suppose they won’t say sorry I made a wrong diagnosis because they want to cover their back in case you tried to sue. I have had a doctor apologise for diagnosing shingles as sinusitis, once she saw the vesicles she knew straight away what it was. I appreciated her admitting she got it wrong. I had no idea what was up with weird neck and face ache for over a week and then feeling so nauseous I had to lie down as I became completely incapacitated. I thought the symptoms seemed a bit OTT for sinusitis but concluded that it must be a really bad bout of it 🙄. She was excellent after that I guess the best ones are able to admit they don’t always get it right when an illness is in the early phases. It was gruesome - on the optic nerve - the pain indescribably awful she gave me some heavy duty horse pills that helped massively. I think my doctor would rapidly learn from any errors because she was able to recognise them as such but I doubt yours is capable of reflective learning. A closed book.
Suggest you get FULL Thyroid and vitamin testing 6-8 weeks after dose reduction
This will almost certainly show extremely low Ft3
Meanwhile email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists (NHS and private lists) who will prescribe T3 alongside levothyroxine
tukadmin@thyroiduk.org
It’s common for conversion of Ft4 to Ft3 to get worse around menopause. Many many people on here, who have been happily on just levothyroxine for years find they need addition of T3 after menopause
Trouble is NHS extremely reluctant to recognise or prescribe due to outrageous price charged to NHS for T3 by cartel of supplies
Come back with new post once you get results
Generally we recommend supplementing vitamin D, not cod liver oil (too much vitamin A)
A good quality daily vitamin B complex with folate in instead of folic acid
I currently take Florisene which contain vit C, B12, Biotin, Selenium, Lysine and Ferrous Sulphate.
I just want to point out that as this supplement contains iron then the absorption of everything else will be affected. Iron should be taken 2 hours away from any other supplement (and 4 hours away from thyroid medication).
Doctors are terrified of a low TSH as they imagine they'll get into trouble by giving the patient too much thyroid hormones and think the patient has now become hyPERthyroid - which isn't the case.
They should stop referring to the TSH alone as I think that must be how they've been trained but it is from the pituitary gland, not the thyroid gland. They should concentrate more upon how the patient 'feels' on a particular dose.
I am fairly new on this fabulous forum; but unfortunately, as with 99.9% of the members on here...I too have had to deal with some clueless doctors, who only look at the TSH values; not only are some of these doctors clueless, but they also don't seem to care.
To me, you do not seem to be over medicated, but a little under medicated, if anything (you could possibly use a little extra T3).
You have had two informative and helpful responses from two of our best! so you're moving in the right direction.
Personally, having been through the same thing, I would look into changing your GP, to someone who will listen, and who cares (even if they don't know a lot about Thyroid problems) because a helpful GP can refer you to the Endo you might want to see. Appraise yourself about the vitamins you might need, and, if you're not on them, get on them. I did this, and it helped my symptoms a little. It will be a good starting point...and then continue to use this forum.
I hope that I haven't waffled on too much, and, what I have written makes sense; apologies if it's a little jumbled (I'm typing on my cell phone, which is not ideal for me). To recap, I would change your GP, take required vitamins, find a good endocrinologist, if necessary, pay privately for bloodwork and use this forum...it's not in your head...your symptoms will improve greatly, and, it won't takes ages for you to feel better either. Take care x
He's an idiot. I notice you wrote 'consultation with a Dr' which suggests he's not your usual doctor. Is it possible to see someone else? Blood tests in two weeks is daft but perhaps it will allow him to rationalise a change in attitude or perhaps swot up. Stand your ground, be polite but stand your ground.
In my surgery you don't now get an appointment with the doctor you wish but have to take 'pot luck'. The doctor you consult may never have seen you before and doesn't really know you.
I had an experience a few months ago, and I was misdiagnosed (by phone)and given a medication which made me worse and I had to phone the surgery and luckily I spoke to another doctor who prescribed antibiotics.
Another experience for another condition a doctor prescribed after a 'phone consultation' (before the coronavirus) and again it did nothing for me and when I phoned surgery I was referred to the local optomotrist (at the local opticians). I was then told I had Blepharitis which is a painful condition and I just hope it doesn't recur in future.
I don’t have a “usual” Dr these days. You just get whoever is available on the day. I did previously ask the surgery if there are any Gp’s there that specialise or have an interest in Thyroid conditions. The answer was no.
Also during this time of Covid it’s virtually impossible to see a Dr face to face.
I haven't come across any GP who is interested in thyroid disease I think it is probably too difficult for them to monitor so they don't look at symptoms just blood results which means just the TSH. I once sat in front of my GP with a balding head and nails dropping off and he refused to give me Levothyroxine even though I had been prescribed it before and I even had an exemption card in the past. The only doctor who ever examined me physically was Dr Gordon Skinner and he could see my levels were too low by just looking at me. If only there were more doctors like him. Unfortunately he is no longer with us and he is sadly missed by his patients.
Dr Gordon Skinner is very missed by his patients who travelled all over the UK to consult with him. A doctor who was pursued by ?????? and who appeared before the GMC several times. It certainly wasn't his patients who complained, so who were the pursuers? The GMC discharged him every time but the strain he had to undergo (even if he didn't feel it) may have caused his demise.
I only saw him once and he helped persuade my GP to give me Levothyroxine ... I think he helped me go into remission when I was offered counseling by my Endocrinologist when I felt so ill. As I have said before he was the only doctor who actually examined me and could see what was wrong straight away. He made me feel at ease and joked with my husband. He was a lovely man and the world has lost a great doctor.
I would try and get someone else. You could ask who is on duty on certain days with a view of avoiding the problem doctor or perhaps tell the receptionist you just don't get along with him.
I wouldn't do that because she will tell him that and it might be put on her records. I have difficult patient written on mine because I disagreed with one of my doctors.
Shame you can't put on *her* records that she's a difficult doctor with massive gaps in her knowledge and a refusal to research and keep up to date with underactive thyroid issues!
Also I had a disagreement with the receptionist at my surgery because she refused to give me a print out of my blood results and she has put this on my records as well. This was 8 years ago but it is still there for everyone to see along with "delusional" because I kept going back because I felt unwell with undiagnosed hyperthyroid. I asked for it be removed but the partners refuse to do it. I am still angry about this now but there is nothing I can do about it.
I have thought about it but having worked for the NHS I know I would be marked as a difficult patient so I haven't complained. One of the GPs at this surgery actually injected me with pethidine even though I am alergic to it because she did not read my notes. I then collapsed and was rushed to hospital by ambulance and she retired shortly afterwards so I didn't have chance to pursue that. Having moaned about my past treatment I can say that my surgery did look after me very well in February of this year when I was having breathing difficulties because of a nasty chest infection. The GP concerned had me admitted to hospital for further tests and I was given excellent care by my local A & E. Not everything is bad about the NHS but when it comes to thyroid disease they are sadly lacking.
Oh I’m sorry to hear that. I too used to work for the NHS so I get what you’re saying. The whole thing is just so frustrating and you can’t help but come across as pushy at best when you are advocating for your own health and no one is listening 😱
I understand you can write a letter to the practice manager, requesting that your objection to this charge of being 'delusional' and a 'difficult patient' are removed. Even if they don't remove them, your calm and rational objection to the unwarranted comments are logged.
Honestly, I despair of this country's NHS services vis a vis underactive thyroid treatment and understanding :0(
I have had a meeting with one of the partners and the practice manager but they won't remove them because the GP's who wrote them no longer work at the practice.
You can choose who you see in the practice, obviously if it's an emergency appt you take pot luck but for ongoing care you can stick with one you get on with. My GP only works a couple of days each week so I wait until she's in to either see or speak to her, the others have a meltdown when they see my thyroid levels but my GP knows me and is happy to leave well alone ! If one of the others gets in a tiz over my results I just tell receptionist that I only deal with my preferred GP and leave it at that 😉
Thank you 😊. I’ve seen several. They all sing from the same hymn sheet. TSH, TSH, TSH. I’m considering seeing someone privately. It’s not that I’m looking for someone to just agree with me but for someone to consider ALL the evidence and then inform me fully if they are still of the same opinion of all the others.
The “TSH, TSH, TSH” hymn joke made me laugh, good one!
As for finding a doctor that would at least first consider all the evidence and then possibly end up telling you the same things previous ones did, wouldn’t that just be even more upsetting and stressful?
If anything, you are better off knowing in the beginning what kind of doctor she/he is. I would play clueless and let her/him have a look at my blood test results without explaining any of my issues/symptoms and see what kind of reply I get. If the doctor simply says “your blood test results look fine/good...so, what exactly is the problem?” then you know not to waste time on her/him.
If, miraculously, you get asked “so, how are you feeling? What kind of symptoms are you still experiencing?” then there might actually be hope!
I’ve booked myself a consultation with an endocrinologist now. I will take your suggestion and just see what he has to say about my results and go from there.
This has been going on with the Gp’s for at least 8 months now and I’m at the end of my tether plus feeling increasingly unwell.
Oh well I am feeling better now after venting my frustration earlier haha.
M1ssmolly i suggested this to someone else the other day....
What dose are you taking? Apologies if you said and I’ve missed it.
Reason I ask is, if you have a range of tablet doses or a size you can split, you can control what you take yourself. I did this for a long time on levothyroxine and at no point did the pharmacy or gp catch up with me and ask questions.
It’s easier if you already have access to say 25 mcg tablets but still,possible otherwise.
Ignore the gp, keep records, use this group regularly and go back and stick it under the gp’s nose with evidence of your improved health and ask them to justify their reduction 😉
My Dad is on 100mcg because he is classed as elderly at 78. I wouldn't stand for that and I would buy Levothyroxine myself because it is not that expensive to purchase online.
I'm sending a virtual " hug " and yes, totally understand your feelings of frustration.
Your T3 is in range, and at just around 33% through the range - a little too low, hence your symptoms, and with your T4 at just 66% through the range , you actually need an increase in your Levothyroxine,
However your conversion of the T4 isn't good as both T3 and T4 should be pretty much balanced and as you can now see your T3 and T4 percentages are a bit off :
Your conversion can be improved if you maintain your vitamins and minerals at optimal levels : ferritin needs to be over 70 for any thyroid hormone to work effectively, and you also need support from folate, B12 and vitamin D at good high levels to maintain your core strength strong and solid.
I was where you are, and my doctor was the senior partner with thyroid and women's health being her speciality, so it's not necessarily a good idea to place any trust in the captions.
As I understand things, it's better to supplement each vitamin and mineral independently, as they are not necessarily compatible when taken all together.
As for a repeat blood test in 2 weeks time, it's a waste of everybody's time, unless you can arrange, that it includes all your vitamins and minerals as mentioned above.
You'll to probably need to supplement, as here gain, if in the NHS range you'll be considered " good to go ", whilst hypothyroid people need higher than " just in a range " numbers to stay well and convert the thyroid hormone replacement.
The TSH blood test was originally introduced as a diagnostic tool to test, confirm a suspected case of hypothyroidism.
Once on any form of thyroid hormone replacement it is not a reliable measure of anything when used in isolation.
My blood tests for T3 and T4 were begrudgingly undertaken by my surgery providing I pay for them.
The hospital laboratory sent me the bill for just over £34 - whilst sending the blood test results to the doctor - who thought I was very lucky to have a T3 at 4 just 25% through whilst my T4 was at 80% - needless to say - my frustration and anger spilt over :
I understand these additional blood tests cost around £1 .00 each to process ???
But it seems, that even with a glaringly obvious problem you may not qualify for an additional prescription of T3 - I was refused by the endocrinologist, when I eventually got an appointment and told I was overmedicated as my TSH was suppressed and I should reduce me Levothyroxine.
I'm with Graves Disease and following RAI thyroid ablation in 2005 became very unwell some 8 years later : I am now self medicating and buying my own full thyroid hormone replacement and much improved, thanks in the most part to this amazing website and a couple books, and with much less stress, liberated and looking after myself.
Well thank you for that. It doesn’t give me much confidence in the medical profession that’s for sure but as a former midwife I’ve come across lots of inexperienced Drs of all ranks.
However it’s one thing arguing for the appropriate care of women and babies in your care and expertise as opposed to trying to sort my own health out 😂.
I suppose I have just gotta do what I can and go through all the steps. Thanks again for your advice. Much appreciated.
Also do you always get same brand of levothyroxine at each prescription?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I do usually take my Levothyroxine in the morning and have been taking it with the supplement but on an empty stomach and an hour before food. I will start taking at night to see if that changes anything 😊
Taking supplements within four hours of levothyroxine will have been blocking absorption
Many of us find taking levothyroxine at bedtime is noticeable improvement, equivalent of small dose increase
No food for 2 hours before (3 hours if it’s a feast)
Only water for an hour before
Avoid high calcium food or drink for four hours before
I would look at changing some of your supplements too. But only make one change at a time
Retesting FULL thyroid and vitamins 6-8 weeks after changing to taking levothyroxine at bedtime
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Oh dear. That is awful. I had a similar experience but stood my ground. Maybe seek the help of an endocrinologist. Then doctor may listen. If you feel well that is the point.
Yes I know. My TSH is always 0.03, 0.07 at one point and felt well. Doctor tried twice to drop mine down and I started to feel under par after a week. I bought some 25mgs online but we should not have to do this.
Just hope you are sorted now. I kept following my doctor's advice on TSH 0.02 T4 18.6 and T3 5.2 in range 4.00 to 6.8. The doctor panicked and told me to drop to 75 mgs. I felt rough. So I took 100 mgs. Joints still ached and I felt under par. Just as a matter of interest I took 125 mgs/100 mgs every other day. Guess what. I feel better than I have for a while. Goodness knows what my TSH is now because they will not do routine tests during Covid. But I feel well and very balanced. I really need to see an endocrinologist to back me up. But no appointments at the moment.
I am still battling 😂. I’ve literally just purchased 25mcg from an online company. I think I will be better once I am back to my normal dose. Thanks for your reply 😊
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