Yes. I spent nearly 2 years all but stuck in bed feeling very ill following 4 years of being wrongly medicated. It was only thanks to this site that I have been able to understand my results and push for better treatment.Things can improve but you need to learn as much as you can so that you can be an advocate for your own health.
HiSo sorry to hear about all your medical issues, honestly the fact we have to have forums like this one to support and advise each other because we aren't getting optimal treatment. Many of us can relate to what you are going through. If we were all OK we wouldn't be on forums lol.
Many members spent years being fobbed off, told they were depressed or a hypochondriac. Some unfortunately developed other medical issues due to thyroid problems not being diagnosed quickly enough or them not being treated properly.
But many have taken control of their health and have turned things around and I hope you can too 😃
yes, I had a disastrous birth 35 years ago which damaged me beyond anything you could imagine, I had polycystic ovaries and irregular menses with a full hysterectomy at 42, I lost part of my colon - I'm described as 40% disabled because of my current health - people just don't realise that hormones effect every part of your body - I'm now 61 and enjoy quite a full life although the b****dy consultants try to take me off half my levo and lio every. single. appointment.
I’m so sorry that you feel unwell kim1965, but glad that you’ve reached out to forum members for support & advice. I felt overwhelmed by the number of symptoms I experienced as a result of having hypothyroidism, but have managed to improve my physical & mental health by following forum advice to test thyroid levels & key vitamins, post results & try to optimise levels as needed. Can you share your most recent test results, so members can best advise?
I really hope that you receive better treatment kim1965 as you are clearly woefully under medicated. Can you ask for antibodies to be tested by your GP? If not, are you able to test privately? This would show if your thyroid condition is auto immune, aka Hashimotos. I only started to feel better when my TSH fell below 1 and my folate, ferritin, B12 and Vitamin D became optimal.
Was your initial Graves diagnosed by positive and over range TSI or TR ab antibodies?
Just checking, because I was initially diagnosed as Graves (due to numerous ‘ ‘hyper’ symptoms, Including TED), but when I tested antibodies privately (encouraged by forum members), they actually showed raised TPO antibodies, confirming that the cause of my hypothyroidism is auto immune,
The answer is , I dont know.My records state that initially I had overactive thyroid that they called Graves ..
Further on it is said (excuse my spelling) that i had thyroxidosis ......then in 2016 sub clinical hyperthyroism and now hypo plus all of the other stuff .
I was encouraged by SlowDragon & others on the forum to ask for copies of all past blood tests from my GP. You are legally entitled to these. In my case, members suspicions were correct, there were no definitive antibodies for Graves (although my Endo is still adamant that had all been tested, I would have been positive!)
I was very ill for nearly 10 years and was tossed from pillar to post with severe hypo being very close to myxoedema coma before I took advice from here and sorted my own medication. I now know that I have pituitary failure from a head injury and all of my endocrine systems have failed. I finally found an Endo who understands and is giving me the correct medication but it's too late to stop the damage this has caused in my brain. I now have metabolic dementia caused by the problems with initially my thyroid not working. I'm ok now I'm receiving better treatment but the damage has changed me as the dementia progresses. Fortunately it's very slow and fairly stable as long as I take the medication. My local Endos are completely useless. Heather
Prayers and Sympathy for you heathermr. There are just no words that I can say to undo what Dr's did to you. All I can do is Pray 🙏 and send you Healing Hugs for Long and Healthy Fulfilled Life.
What were your thyroid blood test results on 50mcg between 2019 and the most recent one?or did you not have any blood testing in this period to monitor the effect of the 50mcg dose ?
I ring for my test results and have been told time after time that there are no problems 🙄
Most recently my OH asked why i didnt have all of my test results etc on The NHS app like he does (he never goes to tbe Drs lol )
Now I dont claim to know that much about my condition , but it is as clear as the nose on my face things have been missed.
I discovered from these records that in Sept of 2020 the Dr who looked at my results could see that i was undertreated said that my intake of levo needed to be upped and that was as far as it went .....
The long and short of it is that just 3-4 weeks ago I was a 57 year old with an underactive thyroid , who was very tired a lot of the time ..
I did not feel unwell .
As of 4pm today
I have Diabetes 2
Liver issues
And high blood pressure
The Diabetes and liver issues would have continued to go unchecked if it wasnt for my curiosity looking at the results on the NHS App
As mentioned in an early post I am now on 75mg of Levo , my next blood test is in late may.
I have been put onto blood pressure tabs Ramipril but a very low dose 2.5mg .
I have read so many articles over the last few days , and I believe that all of these oversights have placed me in the predicament I am in now .
I am angry , but whats the point, they cant change what has happened .?
I just want to try and move forward and hopefully be where i need to be.
Thank you to everyone for your kindness and support .
hi kim1965, They often don't put all the previous results +[ranges] for blood results on the patient app thing....they often just put the 'comment ' ie. 'normal/satisfactory ' etc.
You will need to get hold of the actual results +[ranges] to see what has actually been going on with your blood tests from when you were stared on 50mcg until now. Easiest way is to go into reception and ask for a printout of Thyroid Function blood test results +[ranges] for the dates you are interested in. Ask for TSH ( Thyroid Stimulating Hormone and fT4 (free T4) and make sure [lab ranges] are included for all tests.
Because 2019 /2020 /2021 is not too long ago this may not be an issue for receptionists to provide , but if there is a problem with them giving you 'old' results , then you may have to do an SAR (subject Access Request) .... ask reception how to do this.... it used to be a form you fill in, but it may be different now .. it may be that you have to set up 'enhanced access ' to be able to see the actual results on the app.
They sometimes don't automatically increase the levo dose based on just 'borderline'/ 'satisfactory, continue of patient feels well ' blood results unless the patient sees them to say they are feeling unwell on that dose.
So the 2020 comment about 'undertreated?' may not have gone any further unless you made a GP appointment after that blood test.
However if you had phoned to enquire about that 2020 blood result at the time and were told 'normal' then that's something you should complain loudly about.
Without knowing what your actual TSH/fT4 results [ranges] were during 2019 /2020/ 2021.. and what you were told when you asked for results , and whether you went to the GP due to feeling unwell etc .. it's hard to say whether your dose should have been increased earlier or not .
You WOULD expect them to increase dose if TSH was significantly over range though.. they are supposed to keep TSH 'in range' at least when treating patients with Levo. .. so if you discover any previous over range TSH's that you were told were 'normal' and you had told them you felt unwell, then they have clearly failed in their care. (and if you discover any previous TSH 10's where they did not automatically increase your dose ..then they need dragging over the coals)
It certainly needed increasing now as latest TSH was 10 .. so it's good they have increased it to 75mcg now . Did they at least tell you about this one and increase the dose themselves, or did you have to ask for the increase to 75mcg yourself ?
In future thyroid blood tests ,always ask reception for printout of the actual Thyroid blood test results [and ranges] at the time... don't just accept the 'comment' the receptionist gives you when you phone for your results , because 'borderline'/ 'satisfactory if patient feels well' comments that may suggest slight undermedication might not be acted on routinely unless the patient actually present's themselves to GP with symptoms of undermedication.
Hopefully you will start to feel better on the 75mcg over the next few weeks .
~ why you weren't notified to increase levo dose from 50 to 75mcg when they received the Feb 2020 test. You definitely should have been contacted about this result even if you felt ok at the time... not only is TSH extremely high but fT4 is also under range .
~ and why there is no TSH result for Sept 2020 test ( when previous TSH was so high)
They did a blood test in 2021 but no thyroid tests ....
Until now i have had no reason to doubt my medical practice.
I have only discovered all of this because my husband suggested i get full access via the app.
They had done a test HBA1C for diabetes 10th march 2022 which had come back high
They retested 28th March I rang for resulted and was told
"Stable no further action "
I then just out of curiosity looked at the app and i could see that it was still high ...
I then asked to speak to a Dr , had to go through all of the online palava , and in the meantime have taken a closer look at my results .
I then asked for all the consultations i have had from may2019 to present which they provided.
And here we are ..
I am more than convinced that these additional health issues that I now have are linked to the fact that i have not recieved the correct treatment for my thyroid .
I am going to ask for a face to face app with my GP (wish me luck with that lol)
Thankfully I do not feel unwell
Tired yes , but not unwell.
Thank you for the support it is very much appreciated.
Something to bear in mind.. some members have noticed that the results they had received by asking for a printout at the time, and that were initially shown on their app..... seem to have 'diss-apparated ' from the app when they look for them a few months later... so, when dragging your GP over the coals it might be worth double checking that what he is seeing on his records match with what you are seeing on the app.
One person on here who started paying close attention to their online results is more than a little suspicious that the results which have 'diss-apparated' are the very ones that they would have had grounds to make a complaint about. In your case the lack of a TSH result in Sept 2020 is 'a bit dubious' .. NHS will always do a TSH first... they may or may not always do an fT4.... but unless there was a problem at the lab and they were unable to process that sample for TSH, it seem highly unlikely that a TSH test wasn't done in Sept 2020... and if the lab had reported that they were unable to complete the TSH test , you still have to ask why it wasn't followed up by GP asking you to repeat the test, due to previous one being so high.
I'm a luddite .. so i don't quite trust all this 'app' business... it's probably only as good as the person inputting the data.... when i got my historic records . there are some discrepancies between the correct original data and what was later transcribed to the digital record as a summary ... according to my 'summary health record ' i got post natal depression the year BEFORE i gave birth... ( when in reality i never actually had post natal depression at all, even after the birth )
you're welcome .. yes it is all 'a bit much' isn't it... and quite unsettling the day you you realise 'if you want something doing properly you better do it yourself' when you have always largely believe the Dr knows what he's doing, and has his eye on the ball .
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.. yes it is all 'a bit much' isn't it... and quite unsettling the day you you realise 'if you want something doing properly you better do it yourself' when you have always largely believe the Dr knows what he's doing, and has his eye on the ball . 
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