So I was diagnosed in 2019 privately after fighting with the NHS for 6 years.Raised antibodies and massively symptomatic. Been on 125mcg L4 for last 2 years with no symptoms and feeling amazing.
I had a surprise blood test done for anaemia because of a Gynaecology procedure that caused 6 weeks of heavy bleeding and as already anaemic felt terrible.
The blood test done at 0900 (meds at 0600) came back with elevated TSH levels and my new GP who doesn't know my history has told me I was misdiagnosed and I have Graves not hashimotos.
My previous GP understood my bloods had surges and lows and was happy to discuss symptoms rather than rely on blood tests.
I've been symptom free since diagnosis and healthy. Managing my weight (just about) and no other issues.
They cut my dose to 75mcg immediately after the blood test and I'm now feeling symptomatic, progressively worse now after 12 weeks.
Hoarse and irritated, shaky, palpitations, swelling legs etc
Has anyone experienced anything similar?
She told me biopsy was the only diagnostic tool.for hashimotos which I've never heard of. And despite all communications being on file sge hadn't read my history.
She has a masters in medicine but isn't a specialist in this area.
She told me just because I paid doesn't mean it was worth the money or the clinic was any good.
I am upset and angry to be back at square one with this argument.
Please let me know if you can relate or have any advice.
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Lisalisajay
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I don't understand either.This woman GP has never spoken to me before and just jumped on without any prior knowledge and totally trashed my whole experience. If I was symptom free and no issues why mess around. I'm now feeling terrible and very poorly.
They wouldn't give me the results and I'm waiting on my full records to be released. Now back to paying for full tests because they aren't supporting me and it's brought back every ounce of anxiety and stress.
They are legally obliged to give you results, especially if they aren't making them available via the NHS App or online access... I'd ask at reception rather than the GP
If you have enough stock I'd increase gradually back to your happy place after testing, honestly we have to deal with some hopeless GP's 😟
What did your frees look like before this reduction?
Last blood test was fine and wasted to carry on. Last August that was.
I hadn't approached for a consultation, she just took it upon herself to call me and tell me misdiagnosis.
I used to swing between hyper and hypo before meds and suffered all the negative aspects of both. The meds stabilised and stopped the swing.
Will postpone blood test until after private results are in. Then I'll see what NHS says. Honestly I feel terrible and very very sick again. Crying literally from the stress.
My lovely named GP who I'd had for 30 years retired after Covid and another female GP took over. I had a consultation with her found her dismissive, patronising, tried to fob me off with anxiety ( not something I'm known for) in short a right beatch.
I wrote a letter to my surgery just asking I be removed from her list and they complied. I didnt go into detail why I didnt want to see her again. I'm getting too old and too impatient to be putting up with that crap.
It sounds like the person you saw is utterly ignorant of thyroid.
Biopsy is rarely done for Hashimoto's. (Like, I don't remember reading of a single one here. But that could be my memory.) Fine needle aspiration is done for anything which could be cancerous - and might incidentally identify or confirm Hashimoto's.
Ultrasound scan can be helpful.
This link is to a search on the Radiopaedia site which is all about diagnosis - of everything:
I think you have to complain to the surgery manager. But I completely understand why you would be waiting, and not wanting to do so. Is there anyone who can help you? Go with you to an appointment?
Although someone who understands thyroid would be ideal, the absolute basics can be explained in five minutes if the person is receptive. And they are there for support rather than detailed understanding.
I sent a letter in yesterday and copied it into an email. They have 6 weeks to respond.
I detailed my struggles with 3 missed diagnoses via NHS and my lack of trust this has brought on. She knew nothing of my history and didn't ask how I was doing. I lost my cool on the phone and she's noted on my record that I'm clearly traumatised by my experience in the diagnosis pathway.
I cannot believe that in one blood test with no prior knowledge of my case she tells me the last 5 years are incorrect? Surely I would be feeling poorly if on the wrong meds and if misdiagnosed?
Thanks for all your input. I have found a thyroid specific clinic should the need arise for another private appointment.
If anyone has recommendations please message or leave a comment.
So very sorry you are going through this wretched experience. The "TSH Monster" and "Ignorance" strike again, from folk who are not trained thyroid specialists.
I see an NHS Professor privately. He prescribes NDT privately for me. I last saw him Friday 2nd August. He is writing to my GP surgery, and thus it will be on my notes, that my <.001 TSH is not a problem.
Recently, early July I was in hospital awaiting surgery, when the anaesthetist came to do her preop....hmmmm. She told me that my thyroid results were so bad that she would have refused to anaesthetise me if the op wasn't so important.
Despite my having No symptoms of being hyper, afterwards she wrote to my GP surgery, copied to me, and told them I was hyperthyroid and my meds needed adjusting. Oh Wow!!!! I totally understand the enormous stress these interfering medics can cause us.
I don't know where you live, but should you want details of my endo, please feel free to private message me.
The blood test done at 0900 (meds at 0600) came back with elevated TSH levels
0.005 is very low, not elevated (did she say it was elevated or is that your word?) and that is why she thinks you have Graves'. She still very, very ignorant, knows nothing about thyroid, but we do need to get our vocabulary right if we're going to talk to doctors. They consistantly get it wrong, but we should be in a position to correct them is necessary.
As your GP only tested the TSH, then reducing your dose, is bang out of order... What was the actual TSH result ? Without FT3 & FT4 results you do not have the TRUE picture. I would not reduce my dose until everything was correctly tested 🌻
I don't suppose she even looked at the Frees, just the TSH. Ignorant doctors, who don't understand how it all works, believe that a suppressed TSH means you've 'gone hyper' and that hyper = Graves'. They don't know enough about it to understand the difference between a suppressed TSH due to Graves' and a suppressed TSH due to thyroid hormone replacement. And, as you said, she didn't read your notes.
I agree that a formal complaint to the practice manager is in order to get your thyroid hormone replacement dose restored - and, hopefully, a rap on the knuckles for this negligent doctor!
Wasn't fasted and had taken meds so.wasntexpecting thyroid to be taken
Ft4 would be false high result as you took Levo before test
Never agree to dose reduction without getting full thyroid and vitamin testing and testing with correct timing
Low vitamin levels, especially low iron/ferritin will significantly affect thyroid levels
with Hashimoto’s many patients need TSH very low or suppressed to stop the swings in levels
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 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
The brands change all the time. I've been on 75mcg since April and I'm symptomaticI upped it last week as was feeling dreadful but when I requested more they refused. I have some stock remaining and will make sure I'm on the correct dose from today.
Honestly, it's been a whirlwind of chaos and stress and now I'm fighting something that should have been put to bed in 2019 when I was diagnosed.
This is massively unprofessional and not one person has apologised to me.
I've booked an appointment for November with a specialist. I've also sent the info regarding medicated TSH levels being mistaken for Graves and requested I be removed from her list. All info going to advocacy group and CQC, and for my notes to be flagged with abnormal results expected due to diagnosis/medication. No action to be taken unless directed by a specialist and I will be seeing a specialist to confirm my diagnosis again.
Thank you to all for your incredible advice and support. I have gone back on my meds and will be cancelling all future appointments until this GP has been removed from my case.
I am absolutely struggling with body buzzing, mind racing, can't sleep
I haven't felt this poorly in years.
I'm adding to this post because I don't know what else to do, I've got no one to talk to.
Absolutely fed up with this situation now. Can anyone offer an idea of how long the correct dose will take to level me out. I am literally in crisis right now.
Hi! It’s midnight here in the states , but know others will wake up soon over there to also reply.
You’re dealing with two things. The hypo which is challenging enough.
And being completely and totally mistreated by a heartless, uninformed, person with a huge ego and a lot of power. Infuriating. It’s too common and completely dehumanizing. I am outraged for you. Speechless.
But - you have been your own hero.. the hero none of us want to be! But you did it. That is not easy. Well done.
So remember even though you feel like death, you actually are out of the crisis… you addressed the doctor issue. Did you say you have enough Levo? Are you ok to get the right dose prescription when you run out?
So with your hypo… yes, you need to titrate back up to your optimal dose and it’s different for everyone but we give it 6-8 weeks for the dose to settle due to the half life of Levo overall.
You might rmemeber this, but those 6-8 weeks are not always a straight line. In that time there are good days and bad days. But there is a light at the end of the tunnel!
But everyone is so completely different. You can only take the next step and find all that patience and hope you have inside you.
Are you clear on your next steps - the dose you need, and how you will get back up to it?
I hope you’ve managed to fall asleep when I send this 😴
Thank you for your comforting reply. 0330 I fell asleep. I've taken additional 25mcg than the reduced dose thyroxine and my T3.Rough I can handle. I have enough to last me until November when I see the private endocrinologist.
Awaiting acknowledgement of yesterday's email request from my medical centre.
I will update here as soon as I know something more.
It's rough so far but the palpitations and the anxiety aren't quite as intense today. It totally exains why I've taken a nose dive over the last couple months.
I've also reported both GPs involved to the GMC today. I'm not waiting for responses, contacting every organisation in one go.
Personally, I was going to suggest you hold her down and I will beat the cr*p out of her, but your way sounds better. They absolutely hate people who complain properly as you have done. Well done and I hope you feel better soon.
To get more emergency supplies while you up your dose, tell the chemist you dropped some in the sink and now they are all squishy. They can arrange for a replacement prescription.
I really did want to slap her into next week. Arrogant woman. Everything she did was incredibly unprofessional - never tell anyone theyve been misdiagnosed... I mean... but to then say I wasted my money etc... I was gobsmacked.
I have never been so angry, upset and insulted. I felt hijacked and pushed into a corner.
That's insane but that's the NHS for you. If you have enough stock to last you until you see the specialist, then just go with that. In the mean time can you change GP surgery? I had to change mine when they refused to increase from 25mcg.
I feel your pain, I have washed my hands of my NHS GP doing anything to help with my thyroid. I had to go private too and just learn everything I can for myself. I have wasted years being unwell thinking they knew best etc.
hi , is the Nov appt with a private endo, or one who work for NHS ?
NHS are not obliged to accept private recommendations to prescribe levo.. unless you get an NHS endo to support prescribing it's likely your GP's will continue to refuse levo . and without a recommendation to prescribe from an NHS endo you are not likely to win a fight with your GP's on this because a GP prescribing Levo to someone without a confirmed diagnosis of hypothyroidism (ie. over range TSH , or below range T4/T3), who has supressed TSH and over range T4/T3 on levo, is asking for lots of trouble from the GMC (due to criticism/ concern coming from their peers). The fact that a previous GP decided to prescribe levo based on symptoms / private endo recommendation is a personal responsibility/risk taken by that GP, but unfortunately it doesn't set a precedent that other GP's must follow, they are within their rights to have a different opinion (or not be willing to risk criticism from their peers/bosses).
presumably you never had a TSH over range. T4/T3 below range, hence why NHS were unwilling to prescribe levo ?.... so if you want levo prescribed by NHS it's going to be matter of finding another sympathetic GP willing to personally take on the risk ( to them ) of prescribing levo despite blood results not fitting NHS criteria for starting treatment of hypothyroidism..... unfortunately your last bloods make this rather unlikely. (also, they now know you are willing to take any complaints to higher authorities, which will make any GP considering this more nervous of taking the risk )
some more details may help people find you research evidence to use in your favour:
~ did you get hold of the fT4 / fT3 results that led to dose reduction/ stoppage. how much over range were they ? and how many hours before test had you taken last dose of levo .....(and T3 if you take any)
~ do you have any previous NHS results while taking 125mcg where T4/ T3 were in range ?
~ did TSH go as low as <0.005 straight away on any dose of Levo , or was it measurable in lower doses ?
Can you give us exact recent test results for FT4 & FT3? You said they were over range?
Probably you are lucky in a way that GP ever took over prescribing after a private diagnosis. This doesnt always happen. I do caution people beginning Levo from a private doctor/Endo that unless the NHS is on board with the diagnosis that they may face problems at some point in the future and they may be forced to stop taking Levo.
What were your blood results at diagnosis?
Are you also testing and supplementing low vitamin lvels?
I'm seeing a professor privately but is also NHS - I didn't want to wait 3 years for an NHS referral.
My last bloods taken show optimal FT3 and FT4 levels.
TSH prior to diagnosis was up and down and never stable. Some showed 0.03 up to 8.2.
Since diagnosis and medication TSH has been steady at <0.05. T3 & ft3, t4 & ft4 have been optimal range/normal and steady whilst on 125mcg levo +25mcg t3
Symptoms clear and no changes in meds for 2 years.
Until the dose was dropped and within weeks hair falling out, legs swelling, debilitating fatigue and hoarseness/loss of voice/swelling preventing speaking. Weight gain and painful joints.
Vit D, B12, are normal and I supplement daily
Iron is low end of normal - and I'm on 2 x 400mg iron daily prescribed
Cholesterol is normal
The TSH range is as expected - stable levels only occur in the low levels (about 1.0 and it swings as symptoms swing between over and under active).
No other health issues now the dosage is back to 125mcg. Not bouncing off the walls, just coping with life.
you said previously that T4 / T3 were 'elevated' at last test ?
how much over range were they, and what time did you take last dose Levo and T3 for that test ?
if you are also adding privately sourced T3 that the GP doesn't know about , this will make it even more difficult to get an NHS prescription for levo re-instated (as T3 will supress TSH more than T4 does, but they will think it's supressed due to levo dose )
it's not fair, but realistically you probably have to decide which horse to ride ..... if you want NHS diagnosis you have to feel crap for long enough to go through their hoops .. which means being off levo / T3 for long enough to build evidence of unreliable TSH etc and keep pushing for a 'trial' of levo based on symptoms .
or, accept that you are self medicating T3 anyway, based on improvements in symptoms and so you may as well source levo privately as well .
It's not usually possible to try and short cut it by doing both at the same time without running into problems at some point .... because without getting an NHS accepted diagnosis of hypothyroidism , as you have just discovered , any time you go and to see a GP for anything else the first thing they will do is blame the obviously out of range TSH / T4/ T3 levels for whatever symptoms you have , and try to correct them first .
Up until August last year, the blood tests were accepted. The new GP who has admitted no knowledge of my history or reading my notes has changed things without consultation with me or anyone else.
The surgery is now requesting help and input to avoid any further escalation.
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