First appointment with an endocrinologist this afternoon and it felt like a slow motion car crash.
They tried to be kind and sympathetic, I could tell they genuinely wanted to be reassuring… but I just started seeing red flags as soon as they told me “I spend most of my time taking people off levo because it’s over prescribed”.
It got worse when they said it was virtually impossible for me to have a thyroid problem if my blood results didn’t show thyroid antibodies.
I gave up when they said low heart rate isn’t associated with thyroid conditions. I wanted to cry when I pointed at my low iron/ 19% transferrin, asking if they think it could be causing fatigue and they said “I only test ferritin, the rest don’t matter”.
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Holly_Tree
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They were private, but definitely diabetes focussed. Final recommendation was for me to try Metformin because irregular periods and struggles to stay at my healthy BMI were definitely PCOS and nothing to do with thyroid symptoms. My testosterone etc were all within normal ranges. Results in date order;
June - early morning, finger prick results; TSH 5.23mlU/L (0.270-4.2), FT4 11.9pmol/L (12-22)
My Gynae also tested later in June, but it was taken 2pm in the afternoon. Result was 3.0/14.5.
August - 9am, Medichecks blood draw results;
TSH 3.23mlU/L (0.270-4.2), FT4 15.7pmol/L (12-22), Free T3 4.56pmol/L (3.1-6.8)
They weren’t on the thyroid uk list, but runs NHS clinics and described as having a special interest in “thyroid, pituitary and adrenals”. Unfortunately I didn’t have the list when I booked. I’ll have a look for someone better and speak to my insurance about coverage for a second opinion.
I’ve been taking vitamin D and vitamin B12 via mouth spray since August 2022, along with a folic acid supplement. I’ve also been taking omega-3 and CoQ10 since Feb 2023, then 4g Inositol which I started keto diet in March. Inositol and keto didn’t do anything for me at all.
The problem is, all my ‘PCOS symptoms’ overlap with what could be considered ‘thyroid symptoms’. The diagnosis criteria actually says all possible thyroid conditions should be completely ruled out first.
I feel a bit in limbo where going keto/low carb for 6months did nothing to help my fatigue, low heart rate, periods or muscle pain; but my TSH is too normal for anyone to take it seriously.
Deep breath. So as a diabetes based Endo, she should be familiar with PCOS and the most obvious test is higher levels of testosterone. You mention 'My Gynae', have they diagnosed PCOS or any suggestion of it? I also worry about Endos overprescribing Metformin, are you pre-diabetic? I personally don't think Metformin helps weight loss either. It is terrible stuff to take. It can help with fertility for short periods to lower testosterone if you are trying to get pregnant. Certainly sounds like she knows little about thyroid and blames everything on PCSO but to be fair it is one of the most common, undiagnosed and incurable conditions in women.
How low is your heart rate? Should you be seeing someone about that and they will look at possible causes.
My testosterone is normal so I’m not sure why it would help to lower it, a previous gynae had suggested PCOS due to symptoms and periods but they admitted they didn’t know anything about Thyroid and couldn’t investigate or rule a thyroid problem out.
My blood sugar is normal, I’m definitely not pre-diabetic, and my weight is within healthy BMI even though it takes a strict diet and forcing myself to exercise to keep it that way. Isn’t it strange that the same doctor can be so worried about over-prescribing thyroid meds, but then give me metformin like they are smarties??!
Heart rate varies 48-58, ocasional spikes up to 61 but the average is 54.
Do you get symptoms like dizziness, fainting and shortness of breath? Or are you just one of the people who live with a lower heart rate, they say superfit have it. Best bet might be to start at the beginning and see someone about your heart. As an amateur, your thyroid tests are on the low side but probably not be picked up as mostly within range, June one poor. I don't know about Total iron-binding capacity (TIBC) and transferrin test usually associated with the liver. Lack of female hormones, assume they have been tested. How good is your GP? Really annoys me how we are all self diagnosing, are there not any good professionals out there any more?
It’s strange how cardiologists know that a low heart rate can be caused by hypothyroidism. It’s also strange that cardiologists do not recognise this when they have an actual patient in front of them. What’s going on here? We have endocrinologists who also know (or should know) that this is also the case but do not pay proper attention to this ‘well known’ phenomenon. Do they want to keep that patient all to themselves? Is there some professional embarrassment in acknowledging this? Is there some benefit to whatever doctor is in charge? Is it just downright discrimination against thyroid patients? These doctors appear to be so wrapped up in their own egos (and ignorance) , there is no room for the actual patient. Shades of and subtlety are clearly not their strong points; although I can’t see shades or subtlety in these people, just downright ignorance. Or maybe it’s just some stupid ‘target’, set up that can be easily achieved. We are easy targets for ruthless idiots to make their names. How many did we get off levo/T3 this month?
I have worked up the courage to push for an increase in my levo (I have messed my intro of T3 yet again due to my own ignorance) and I find I am suddenly more ill but after four very productive days. ??? Into the fifth week of going back to my 100mcg levo and felt I was benefitting (in the full knowledge that one way or another - under medicated). The persistent thoughts around handling this likely combative situation with a GP, means I am not sleeping again (appointment is not for another month!). In my dream/waking state I am even more disabled than I am in my day to day living, I can’t remember my grandchildren’s names (luckily I can when fully awake) and I need a wheelchair. I am helpless. Much of this is due I think, to the stress of the anticipation of the appointment.
So Holly-Tree, I feel for you.
We don’t need the added stress and the bigotry of this system of so-called care. When will it end?
I was told by private endo that low heart rate was only seen in hypothyroid patients who were experiencing myxoedema coma. She totally dismissed my symptoms.
These people are so ignorant, heart rate is directly tied to thyroid function. When I was hypothyroid, my resting heart rate never went above 60. When I was over-medicated it shot up too 90. Now I'm on what feels like the right dose finally, it's around 72. Doctors are completely incompetent.
Mine varies from 48-58, occasionally creeps up to 61. Apple Watch says my average is 54. I know it’s not normal, but it’s so difficult to argue with a doctor when they say “some people just have a naturally lower heart rate”.
Let yourself get angry and then use that anger to argue back. They sometimes change their tune once you stop eating up every word they say. Alternatively you can make a complaint stating the evidence that low heart rate is tied to hypothyroidism (it is) and that the doctor doesn't listen and so you're struggling to trust them, and then find another GP. Even within the same surgery. You have more power than you think. Try asking at reception "please can you recommend a GP here who listens to and believes patients?" That's what I did and she recommended a wonderful GP who always listens and believes and goes out of her way to help me.
Whilst all doctors appear to be very poorly educated re: hypothyroidism. This has to be one of the biggest mistakes I have come across. My private endo too seemed to be just as ignorant. Truly I wonder how many doctors have seen myxoedema coma. It’s rare these days because we all (alegedlyTreated) get a little T4 into the system, which seems to prevent its presentation. It’s not a life but it’s not actual death!
Me too, I wrote two detailed complaint letters about mine pointing out all the factual errors she made and demanded a refund. They didn't even argue, they just gave me one.
I had an endo I later discovered was a diabetes endo, not a thyroid endo. He was of no help, didn't understand my symptoms as being hypothyroid, promised tests he didn't action.....sent his bill, I wrote a cheque to pay, he still didn't do what he'd said he would, so I cancelled the cheque and wrote to tell him why I had!
I called the hospital this morning, said I don’t want any notes or letters sent to my GP to summarise the appointment. There wasn’t really anyone to speak to, did you send your complaint to the hospital or directly to the consultant?
It was a private endo and I sent it to the main clinic email address, which I believe is their reception, and then they passed it onto the doctor and presumably their supervisor.
So sorry that you had a bad experience. Just to let you know most of my family have thyroid problems, I had mine remove and so did my niece.
None of us have antibodies it's something different with us.
I only visited an endo once 6 years ago when I asked her to add a vitamin d test she didn't even know what vitamins D was and had to look on her computer.
I didn't take too much levo but it gave me awful palpitations - particularly during the night,
Even the local hospital cardiologist couldn't figure out why this was happening as I had to notify him when I had palpitations. On being prescribed T3 it resolved all palpitations and I could feel normal health once more.
I am still prescribed T3 and the local GP increased dose slightly a couple of months ago.
You have my sympathy in bucket loads. My visit to an Endo resulted in a trial off Levo for 6 weeks!!!!! Predictable results, which could be seen by endo immediately; I received a reluctant apology. Now back on levo and slowly getting back to where I was, it’s taking time and I’ve been unwell now for c. 3 months. What is the matter with these Endos, they’re supposed to know what they’re doing but all mine did was harm. I’m sorry I can only offer sympathy and nothing of concrete help. Please take care of yourself.
This is getting to be the norm from endo's to advise coming off Levo for 6-12 weeks, why? It is cruel in the extreme and plays havoc with thyroid sufferers already precarious health status and takes months, if not years to recover. I refused to do it and would say to anyone whose endo suggests that to say no, politely but firmly.
😱 ferritin is a very good indicator of iron deficiency but a full iron panel gives an overall clinical picture. My transferrin saturation % was 18 - a significant deficiency - and I needed an iron infusion. My ferritin was 30 though. I think seeing an iron specialist would be useful.
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