You take a questionnaire which lists ten possible symptoms, and that is regarded as a good indication of thyroid symptom status. But if you present to your GP and say you have dry skin, constipation, muscle stiffness and feel blue (? Yes, really), why can't that GP accept your statements? Or your worst symptoms are not among those ten (even if they are considered the hallmark symptoms).
However, perhaps it is better to have such a questionnaire than rely on GPs understanding and recognising symptoms?
They say that the mean TSH of those requiring a dose adjustment was 12.86. Hardly makes it appear a sensitive assessment, does it? My TSH has NEVER been that high. I suspect quite a number here would not be in a fit state to complete a questionnaire if their TSH were that high.
And yes, they are besotted by normalisation of TSH.
Assessment of the Adequacy of Thyroid Hormone Replacement Therapy in Hypothyroidism
Matvey Brokhin 1, Sara Danzi 2* and Irwin Klein 3
• 1 Private Practice, Brooklyn, NY, United States
• 2 Department of Biological Sciences and Geology, Queensborough Community College, City University of New York, Bayside, NY, United States
• 3 Department of Medicine, NYU School of Medicine, New York, NY, United States
Background: Recent studies identify a significant number of treated hypothyroid patients who express dissatisfaction with their therapy. At present there are sufficient measures of thyroid function to enable the clinician to establish a diagnosis of thyroid disease with a high degree of sensitivity and specificity. The purpose of this study was to quantitate the use of a new and novel assessment of clinically relevant hypothyroid symptoms in the management of patients with thyroid disease and to identify a tool that could help clinicians to assess adequacy of LT4 treatment.
Methodology: Unselected outpatients of the Thyroid Clinic of the North Shore University Hospital at Manhasset completed a questionnaire asking them to rate their physical symptoms related to thyroid disease as part of their standard care. This questionnaire consisted of 10 signs and symptoms. The questionnaire was collected from 198 control subjects, 241 subjects with primary hypothyroidism (under treatment), 113 euthyroid subjects (benign nodular thyroid disease), 73 previously hyperthyroid subjects (previously treated), and 27 subjects with thyroid cancer. A repeat questionnaire was obtained from 48 subjects with primary hypothyroidism (20%), 19 euthyroid subjects (17%), and 17 subjects previously hyperthyroid (23%).
Data Analysis: The mean score for the sum of the signs and symptoms in the primary hypothyroid group with no medication change was 9.62 ± 1.29 for the initial questionnaire, and 10.04 ± 1.32 for the follow up questionnaire (not significant). For the primary hypothyroid patients requiring a medication change, at the time of the initial questionnaire the mean serum TSH was 12.86 ± 2.75 mcU/ml. Concurrently with the normalization of TSH, a statistically significant improvement in the sum of signs and symptoms mean score for this group was noted (16.32 ± 1.93 initial vs. 10.32 ± 1.46 after treatment to normalize TSH).
Conclusion: The proposed newly devised hypothyroid scale correctly identified subjects with TSH elevation and clinical/subclinical hypothyroidism based on their clinical signs and symptoms. In this particular subset of patients, the hypothyroid symptom scale showed a statistically significant improvement in the sum of the signs and symptoms with the normalization of the subjects' thyroid function.
I showed symptom check lists from The Pituitary Foundation, then Thyroid UK, to several endocrinologists & two GPs. All ignored the symptoms, & the latter pushed antidepressants as I'm a hysterical woman with imaginary symptoms. None of the medical staff I've seen in the 6 years since my pituitary adenoma was discovered (after >38 years of hypothyroid symptoms) were remotely interested in anything other than TSH.
Thanks to advice on this forum, most of my errant hormone symptoms are resolved with no help whatsoever from any "qualified" medical staff. Hopefully better medical training & understanding of patients' symptoms will start to trickle down so more people will get better help.
"the mean TSH of those requiring a dose adjustment was 12.86. Hardly makes it appear a sensitive assessment, does it? My TSH has NEVER been that high."
I could hardly function well enough to get dressed in the mornings or make a cup of tea when my TSH was just under 6!!!!
12 is pretty hideous in my experience and I hit over100 at worst which was too horrendous for words I really was the hysterical woman at that stage, hallucinating too and suffering other unspeakable horrors. Not one of my litany of symptoms led to a professional diagnosis of hypothyroidism even when I told several GPs of the family history of the disorder and questioned if I might have it. You can take a horse to water and all that. On Levo I still felt utter 💩 at 6, 3 and 0.5. Only on NDT do I feel pretty normal again and the TSH is very low, most likely suppressed.
Drives me mad - " besotted by normalisation of TSH". The fact that they state that we're not to be diagnosed until it reaches 10 - I think they should all have their thyroid glands removed, so they'd actually experience what their patients have to go through as patient has to 'patiently' wait. Doctors seem to think that if TSH is anywhere up to 10, that patient does not yet need a prescription or are on sufficient hormone repacements.
Even my doctor when I was pleading that I would have to pay for a Full Body Scan as there was something seriously wrong. I was assured he'd do all necessary and, sure enough, he did 23 blood tests and phoned to tell me (I was bedridden) that all my results were fine and I had nothing to worry about. Considering (I found out later) that he seemed to miss a TSH of 97.4 or he must have thought that was fine!
Just looked at the list of symptoms. I've never seen waking early in a list, but that's definitely one of mine - after being a lifelong night owl until recent years! However, two of my most troubling ones - difficulty concentrating and psychomotor slowness/inability aren't on the list.
Others will add more no doubt. What about palpitations and breathlessness for example, or sexual problems and joint pain?
I usually wake by 6 or 7 am, sometimes as early as 5, with occasional catch-ups till just after 9. Previously, if not in work, I would often sleep till 9 or later.
I would be wide awake all night and only able to sleep after 6am - (not very helpful when working 9-5) and I would fall asleep in the early afternoon (it was a fight trying to keep awake at work). I had to suffer raging insomnia in the week missing several nights sleep in a desperate attempt to reset my crazy out of control body clock and I’d sleep for Britain at the weekends. It all degenerated so gradually that I did not even consider it abnormal I had rarely slept more than 5 hours when I was younger so was an early riser then. What I later experienced I’d call sleep anarchy!
I sleep like a baby on NDT and struggle to rise at 5am for work, but manage to force myself out at that unearthly hour.
I can't complain, as I do get enough sleep one way or the other, (if only dozing on the sofa when run out of energy) but it was interesting that it is down as a specific hypo symptom
I do a lot of sofa napping I’m terrible in the evenings! I went through a phase of nodding off mid txt and would wake up hours later on the sofa still sitting upright clutching my phone as if it had just been a quick nap for a few seconds! I managed to buy some composters on eBay by accidentally hitting the buy it now button as I slumped into the land of Nodd luckily the seller was very decent when I explained what I had done and did not hold me to account! The bins were miles away and I don’t even drive so impossible to collect 🙄
I have followed the advice on this post re awakening early a.m. Usually 2 to 3 a.m for me that I get up and watch TV. It has worked so far - i.e. five nights.
How to Stop Waking Up and Get Back To Sleep Faster
Night waking and not being able to get back to sleep can be stressful in itself.
But you might not realize that it’s the stress caused by your thyroid issues that are keeping you awake in the first place.
Imagine this…
If you woke up to the sound of breaking glass in your home could you just roll over and go back to sleep?
Most definitely not!
Odds are you might think someone was trying to break in.
If you got out of bed to find that it was only your cat that knocked a glass off the table, would you then be able to go right back to sleep?
Not by a long shot!
When you are under stress and adrenaline is pumping through your veins, the last thing your body wants to do is sleep.
And when you become hypothyroid, the same exact response occurs inside your body every night… but it’s not caused by broken glass or any other disturbance.
Your ability to sleep and stay asleep depends largely on the health of your liver.
In a previous article on How to Heal Your Thyroid By Healing Your Liver, I covered the importance of liver health in overcoming hypothyroidism.
a significant number of treated hypothyroid patients who express dissatisfaction with their therapy
I really wish they wouldn't use this phrase, it's not a case of dissatisfaction, it's a case of patients remaining symptomatic. Dissatisfaction means displeasure to me, there is a vast difference between that and being symptomatic.
My current pet hate word is "mimic" as in one disease mimicing another.
Sorry, but I'll go as far as one creature benefitting from looking like another. But mistaking one disorder for another is something a doctor does, not a disease/disorder.
Exactly. although it may be a sort of medical technical term with no criticism necessarily implied. Like "The patient complained of a persistent cough" doesn't mean there was no cough, or that the patient was moaning about it.
Like the word "Myth" simply means a supernatural happening to theologians, regardless of whether it really happened or not.
You are right SeasideSusie but I doubt they have any clue as to what they actually are talking about as we are dissatisfied by them because they don't listen to the patients and rectify their own mistakes of withdrawing hormones that restored health to many.
They are calling us aggressive I see in one article - I prefer assertive myself. Do they refer to any other group of patients whose medication is not working effectively as dissatisfied (and rightly so given the deliberate withholding of more effective therapies and systematic underdosing )? I agree the term is used in a negative manner as a veiled implication that it is us, not the medication that is at fault and the inadequacies of the medical profession in treating the disorder. They should take responsibility for their failings and quit the victim blaming game to try and get themselves off the hook. Small wonder thyroid treatment is such a shambles with these patronising, regressive attitudes and prejudices belonging to a bygone era when ironically at least we had NDT and dosing by symptoms as the treatment for hypothyroidism not treatment by inappropriate numbers with synthetic monotherapy and the patient regarded as some sort of mass produced troublesome robot not even entitled to have symptoms or lack of them.
To the authors' credit they DID conclude that a combination treatment of T3 and T4 seems to be the best. Even lab rats preferred it!
Not according to those garbage meta analyses of all the garbage research into combination therapy that are endlessly trotted out to deny us any treatment choices. Garbage in garbage out is what I say and I’m with the lab rats!
Me too. The worst one I've read was a study where a number of elderly people (mostly over 80) with "Subclinical" hypothyroidism were cynically treated with Levo until their TSH was "Within range" at under 5.
Naturally, (even allowing for the older generation's culture of putting up with things and saying they are fine) very few reported any significant improvement. so the stupid and sadistic researchers concluded that thyroxine therapy didn't work and it was a waste of resources treating them! GRRRRRRRR!!!!!
Another problem is that even genuinely good and caring doctors are told so often that TSH is the only valid result to guide treatment, and it's very dangerous if too low, that they believe it.
And we desperate and disillusioned patients understandably lump them in the same boat with uncaring and ignorant ones
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