Strictly speaking, hypothyroid?

[arTistapple]

I recently ordered my NHS hospital records. I had reported major symptoms on a number of occasions over the years - eventually diagnosed vasospastic angina (known as coronary artery spasm at the time) - and saw a cardiologist, finally, in 2001. My TSH and FT4 were asked for. I went on to have a heart attack 2002 and suffered extreme pain 3 to 4 times at least, every day, for the next nineteen years until the introduction of levothyroxine in 2021. Huge number of fruitless medications and expensive tests and procedures, never mind the ……….

TSH 2.4. (O.30 - 4.5) = 50% When finally diagnosed TSH 13.9 (0.3 - 4.5)

FT4 16 (10 - 26) = 37.50% When finally diagnosed Free T4 9.4 (10-22)

I now know I was also tested for diabetes - confirmed but not to me - ever!

From our perspective on the forum (it’s clear the medics did not think hypothyroidism was a problem) I would appreciate comments. Because it’s mine I just can’t be sure of what I am seeing.

Thank you.

[greygoose]

Well, you're under-medicated to have a TSH of over 2. The idea is to get it down to 1 or under. And, at 37.5%, your FT4 is much too low. You probably need it up in the top third of the range, at least.

But, as both are in range, doctors will probably say you're just fine, because they have very little idea of how to treat hypo, nor how to interpret blood test results. And, no idea at all how being hypo affects people. This is all due to their abominable education in the subject, and very little experience. Also the belief that patients are all too dumb to know how they feel!

[arTistapple in reply to greygoose]

Apologies greygoose I could have sworn I replied to you but somehow did not. nellie237 had a problem with my post and I noticed no reply from me to you. From my garbled post you understood the essence of my query. It has been important to me to know the details of why I had been so ill for so long. Thank you so much for replying.

[greygoose in reply to arTistapple]

OK, I'm sorry, I thought those were your latest blood test results.

I see below you wonder what your FT3 was with that low FT4. Well, as your thyroid was failing - according to your TSH - your FT3 could have been good, because when the thyroid is failing, it often produces more T3 at the expense of T4, in order to keep you alive. But, that's only a guess. We cannot know for sure.

[arTistapple in reply to greygoose]

Ok greygoose. Naturally I don’t yet have enough knowledge to have thought of that about T3. And because it is in retrospect “We cannot know for sure”. High T3 however might explain symptoms in this order? Huge and persistent panic attacks with hammering heart for many years, which virtually switched off when exchanged for actual chest pain which started about 25 years ago. Levothyroxine stopped this symptom. However tomorrow is my full thyroid panel to see where I am and the next decision as to treatment. So I will be back again seeking advice shortly! What and where would we be without the advice, understanding and support here? Thank you again.

[greygoose in reply to arTistapple]

No, I didn't say your T3 would be high, it wouldn't. But, it would be higher than the T4, which is not the usual pattern with a healthy thyroid.

[arTistapple in reply to greygoose]

Yes. Thanks for reigning me in. I do tend to run away with myself.

[greygoose in reply to arTistapple]

🤣

[nellie237]

Hi ar Tistapple,

I'm not too clear............is the TSH 2.4. (O.30 - 4.5) & FT4 16 (10 - 26) current or some time (?) before dx?

[arTistapple in reply to nellie237]

Apologies nellie237 and thank you for reading my post. The TSH 2.4 was nineteen years before diagnosis. However it was the FT4 level which fascinated me. If doctors understood anything about hypothyroidism and not so dependent on TSH, perhaps it could have been noticed that T4 was only 37.5% through the range at that time. Goodness knows where my T3 was, with such poor T4 levels all those years ago. On this forum we always say that actual thyroid levels are more important than TSH. I really wanted to get as much info as possible as to why I had been so ill for about 25 years before actual diagnosis by doctors. Hence my enquiry here. When finally diagnosed, my T4 level was somehow minus 5% through range. Again apologies if no-one understands. It’s just been so important to me to have answers. Honestly it looked a clearer explanation on my screen. It was jiggled about when it came up on the main Healthunlocked screen!

[nellie237 in reply to arTistapple]

Please don't apologise. I'm certain I've done the same kind of thing.

I agree that your levels from 19 years ago should have prompted regular follow up testing, but very unlikely to happen on the NHS.

I'm curious...........were your TFT's checked between 19yrs ago and dx?

[arTistapple in reply to nellie237]

I do not know what is happening here. I replied about half an hour ago and I see it’s not been posted! I had to check TFTs. No I have not been checked after the initial hospital request (cardiology). Never and never warned about the result of the diabetes either, until waaay down the road when it became part of my annual checks for CHD which they told me I did not have. Results were always on the cusp but never given an actual diagnosis of diabetes until I asked for an endo appointment.

Maybe I just forgot to press the reply button!

[HowNowWhatNow]

hi

Because I am being a bit slow .. were you tested for diabetes and found to have it, but they didn’t tell you you had that for a while?

[arTistapple in reply to HowNowWhatNow]

When I recently tried to get an endo appointment, my GP (quite a new one) told me I was diabetic. I said my (the long term check they do every 6 months) was just on the cusp time after time. He said NO, that I was diabetic. I kind of took it with a pinch of salt and really my focus was in getting the endo appointment. However checking my recently received NHS hospital results showed (2001) that I was diabetic and the questionable thyroid results. Neither was ever discussed with me. Similar to when I found out I was third stage kidney disease. I think I have been treated appallingly and I will take this all up at some time. I am still sorting myself out, as my priority is to get as well as possible. Not to put too fine a point on it, time is running out for me and so much time has been wasted.

[HowNowWhatNow in reply to arTistapple]

I shared a Personal Injury case in another conversation here. I’ll find it and paste here. In case of interest to you.

I’m not on commission for anyone who asks “have you been hurt in a car accident?” on the radio, don’t worry - just sounds like you have been let down. AND I read this case today so it’s on my mind.

[HowNowWhatNow in reply to HowNowWhatNow]

healthunlocked.com/redirect...

[HowNowWhatNow in reply to HowNowWhatNow]

Have you asked for a medical opinion about whether your stage 3 kidney disease occurred as a result of your untreated thyroid problems and/ diabetes?

[arTistapple in reply to HowNowWhatNow]

No. However many things remain ‘unopposed’ as yet!

[Regenallotment Ambassador in reply to HowNowWhatNow]

Thanks for posting this, it’s very helpful! All those who have lost jobs, gone part time, for all those with multiple health concerns it’s so valuable to know it is personal injury.

[HowNowWhatNow in reply to Regenallotment]

I’m glad and I’ve never seen PI judgments shared here so was surprised to find it.

Remembering that the facts of a PI case like this are so specific to the facts which in this case were; continuing back pain due to the lack of an operation on time because of the undiagnosed thyroid condition.

We each have our own set of facts, is what I mean to say, which would determine the outcome of the case.

I look forward to hearing here what PI lawyers anyone here speaks to have to say.

If you go to speak to one, anyone, make sure you see that they have successful cases on their books first. And speak to a few if needed, until you find one you like. No win no fee lawyers tend to focus on the most likely to succeed cases - no surprise there - so you could ask them how much time they will have to give to your case and who will handle it - be it time from a paralegal, legal executive, junior, senior associate or partner. You want to have some qualified lawyer time for your case (ie. junior upwards).

[HowNowWhatNow in reply to HowNowWhatNow]

Important to remember too that not all cases would be successful! And also that if you had a lawyer, once they take on your case, it’s in their hands and you would not need to do the writing of letters to the court etc. but should expect to have a meeting with the lawyer at the outset (online / in person) and be told what is happening as the case progresses.

Types of factors that could be considered in a PI case would be so varied, just as in a family law / faulty product / any other kind of court case and might include:

Time out of work / time doing less remunerative or career-like work (assessment of loss of earnings)

Mental health: depression, anxiety, loss of cognitive powers, anything psychiatric and the effects on your life that this has

Breakdown of relationships - romantic and friendship - if related / caused by the delayed or missed diagnosis or poor treatment (I am not sure about this but worth bringing up if happened)

Pain, discomfort, other symptoms of illness that if properly treated would not have happened.

Trauma

Financial / other loss - eg property or assets repossessed

Not an exhaustive list!

[birkie]

hi arTistapple❤️

Well I had a much similar experience to yourself, in that from 2014 I started to experience symptoms I could not put my finger on, I only know I felt ill, my gp sent me to an endo who wrote a report bk to my gp... "this lady appears to have had an episode of thyroiditis with 2 short suppressed TSH, her T3 is normal but I feel she has subclinical hyperthyroidism, as her bloods on her last test have returned to normal.. ( no figures for actual blood results on the report) I feel she could benefit from regular thyroid blood tests over this next year to see if her thyroid bloods remains stable.

My gp never carried out this request, I hunted through my records for blood work for thyroids from 2014 onwards and could find none.

I found this report when I requested my medical records in 2020,my gp never told me about my suppressed TSH or the subclinical hyperthyroidism, I went on over the years after 2014 to become very ill, I had tachycardia, tremors, sweating lost weight, and I was finally diagnosed with hyperthyroidism (graves) in 2018,i was rushed to hospital in 2019 as my gp was not caring for me correctly, as I could not stomach the anti thiyroid meds, but he insisted I keep trying them, I ended up in thyroid storm and lost my thyroid in the May of 2019...and all this I firmly blame on the lack of thyroid knowledge by my GP, even now in 2022 I'm struggling with the thyroid medication I'm hypo due to my gp fiddling with my medication because of my TSH results 🤦‍♀️ not looking at my T3, T4,.. Its unbelievable how as thyroid illness sufferers we are treated by the medical profession, I'm sick to my back teeth of trying to tell them the TSH is just a signal not an actual hormone, the T3, T4 are the hormones 🤦‍♀️.. Its like knocking your head against a brick wall.. Another thing I have found is the god complex on some endos/gps they really think they know best.. And god help you if you disagree 😤😤😤😤

[arTistapple in reply to birkie]

oh birkie. Thank you for your story. Whilst it gives us no comfort in our treatment, it does help oddly somehow knowing that our treatment has been shoddy. Its not actually us who were lacking something, other than our hormone balance! I thought I had learned a salutary lesson from my Mother. She always seemed to be pestering her GP. My M-I-L the same. I thought “I won’t do that.” However I feel my trust and my consideration has been entirely used and abused at the moment. I made a mess of my blood tests this morning, so I am now upset about that. It just feels so much was riding on them to see my way forward. I must pick myself up and start again - hopefully with another new kit next week. Thank you for your support.

[birkie in reply to arTistapple]

we need the support because let's face it we don't get much from the GPS or endocrinologists, I feel we're treated like cattle, I can see my GP rolling his eyes in his head as I walk in... Not what you want to see from a professional when your coming to see the gp with very real concerns.

I never bothered my gp much because I was fit and well, I only went when I felt ill, but I feel you must attend the surgery as much as you can especially if you feel unwell and to hell with what the gp thinks!! 😤 Another thing that bugs me is I now to have to get my bloods done privately, as my gp feels I don't need them ( these are for parathyroid problems not thyroid although I am hypo at the moment and have been since the end of May... Do my surgery care... NO!! so on the calcium blood test I have to get it done privately as my last was in normal range.... Hoooo that normal range 🙄🙄🙄 so goodness know how I will fair doing my own bloods🤦‍♀️.. I hope you get those bloods re done and they give you some answers, as I hope when I do mine they also give me answers 👍👍👍

[arTistapple in reply to birkie]

Thinking on your comments, it feels like thyroid treatment is primitive and barbarous. It also seems to have gone into reverse. Stuff that was worked out years ago has been cast aside and it’s our fault we remain unwell. It seems these medics are not capable of spirited free thinking. Sheep. It’s a disappointment on every level. In my case it’s not enough for my cardiologist to ask (quite rightly) for thyroid tests but after having asked, does not link them or probably even understand the importance. Tick box. Too much specialism and not enough overview. Where is HOUSE when you need him?

[birkie in reply to arTistapple]

house.. 😁 By God I wish he was my specialist 👍👍👍😁😁😁

[1tuppence in reply to arTistapple]

Sorry, so very sorry you're going through this. arTistapple.

Comfort is hard to find, except here, where others understand your frustration and, to say the least, utter dismay at what has happened.

Thinking of you, and hoping you find some resolution that enables you to be at peace.

Best of all, that you receive the treatment you and your body needs.

[arTistapple in reply to 1tuppence]

Thank you. I realised when I posted this I just wanted to see if I was seeing what I was seeing. Everyone has come up trumps. So helpful. So supportive. Still need to get my head around it all. Been a bit down after messing up my blood tests which will put me back a week or so. What’s a week or so after the last 25 years? Thanks again 1tuppence.

[MaggieSylvie in reply to birkie]

So sorry to read your story, birkie. This god complex is what makes us godfearing. We have to fight our battles while not feeling strong enough to fight.🤗

[MaggieSylvie in reply to birkie]

If a secretary in an office forgot to follow up on something like this, they would be sacked. Doctors are so high and mighty that they are virtually unsackable.