I've written this because it is much easier than replying individually to probably 60-70% of the posts I see here.
It's very easy having got a diagnosis of a faulty thyroid (hypo or hyper) to focus on that, and forget that the thyroid is but a part of our whole system. We almost never know whether something like a thyroid condition is causing other problems, or is in itself a symptom of another (perhaps yet undiscovered) condition.
I was diagnosed with ME in 1988. In 2000 I finally got a diagnosis of hypothyroidism. Symptoms of both are quite similar but is hypothyroidism the cause of ME or visa versa? We don't have the answer of course but I would say that there is an almost undeniable link between the two.
So, to the point of my post. Recently I contracted a nasty virus that has triggered off the ME big-time. I feel absolutely washed out and rotten. From the long experience of this illness, I know that it may be months before I notice even a small improvement. As the days pass, and I forget the virus and the downturn in my condition, it's easy to start thinking that perhaps my thyroid meds need changing or the dose adjusting. In the past I have changed my dose of Armour or ERFA but to no avail. These days, thanks only to experience, I no longer get doubts about the thyroid medication, and realise that feeling worse is down to something other than the hypothyroidism.
It's grossly unfair, but the vast majority of us are groping around in the dark with this sort of condition. If we concentrate too hard on one aspect of it, we are unlikely to help ourselves, and may even make things worse. So my message is don't think that it has to be your thyroid meds when you feel worse, the chances are that it could be something else. The after effects of a virus can make us feel ill for many months without any of the original symptoms being present. So don't be too quick to try and find another reason for why you feel worse than usual.
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Hypopotamus
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So sorry to hear that it has triggered a relapse of ME for you.
Like you i was diagnosed with ME then an underactive thyroid some years later.
I agree with you about viruses -I have just got over a nasty flu virus -took three weeks for the main part of it to go but have been left feeling tired and drained. Gradually my energy is picking up but I do have to take regular rests at the moment.
I have noticed that these days a virus has a much bigger effect on my system that it did prior to illness. I discussed this with my GP who said I don't qualify for the flu jab but she could indeed see a change looking through my notes -at least they were honest with me!!!. She said i could pay for a flu jab if i wanted and the y would reconsider whether to give me if it happens again..
These days the ethos with docs and work is that we should be able to bounce quickly back up from a virus -those of us who don't therefore can feel a bit of a failure when we don't. My surgery these days also have a tendancy to rush people back into work -the convalescent period seems to be a thing of the past -maybe this is the issue -we all need time to recover fully. And those with other pre-existing conditions will/may take longer.
I totally agree with you, people dismiss things like ME and depression saying they dont exist and it has to be that your thyroid is undermedicated, this might be the case sometimes but sometimes it is not and some people are quite forcibly advised not to seek treatment for anything but the thyroid. An individual has an opinion but they need to remember that is whzt it is, an opinion not a diagnosis
I totally agree with you, Helen, and am fed up with the dissers on this board regarding fibro amd ME - it is against the rules and spirit of the board for one thing.
To add to this discussion; My husband is now 65 and has not shown obvious signs and symptoms, except for his loss of outer eyebrows. As this is an indication of hypothyroidism, and because I have spent the last 3 months studying it - and I have to say probably learnt most from this forum - we decided to get him checked with a blood test via BH - which showed an elevated TSH (2.57)((by our standards)) and a very low T4 with some antibodies. He is genetically programmed towards getting hypo at some stage in his life, and clearly as we age everything begins to eventually slow down. Is it just age? Can it be curtailed in any way? Should we be asking for a standard test for T4 levels if people are showing symptoms of, for example, Alzeimers? If everyone who had this awful condition were tested for T4 we might see a small clue. I think it would be worth testing for T4 as part of a regular diagnosis for many conditions - if there is a problem there we are getting clues that there is something wrong within the Endocrine system as a whole. At least now we have access to private blood testing and are more empowered than our parents. XX
Re ME, fibromyalgia and chronic fatique. In Dr Skinner's book he told how he became involved in treating patients with thyroid gland problems.
He was a Virologist with an interest in vaccines, one of which was named after him.
About ten years after the introduction of the thyroid gland blood tests he was being sent people with various symptoms which other specialists couldn't decide what was wrong. It was thought 'viruses?'. He found many of these people had clinical symptoms of hypothyroidism and thus treated them with thyroid gland hormones and most recovered.
He did what he was taught as a medical student (look at the patient, take a history, and clinical symptoms).
I remember a few years back in the papers they kept mentioning 'yuppie flu' now known as, I believe, chronic fatigue or fibromyalgia. These were named 'new diseases' probably they were not diagnosed because the TSH didn't convey a thyroid gland problem. Dr Peatfield was the same, he diagnosed just as Dr S did and both were vilified. These two deaths of two young women in UK:-
The main problem is - when something goes awry with our health, we do expect the medical profession to find the cause/source but that isn't always the case and we are left to flounder on our own for quite sometime until it get's much more serious and even then sometimes there isn't a consensus.
I got the ME label despite having a family history of hypothyroidism and more symptoms than you could shake a stick at, which were all treated in complete isolation. I ended up with untreated hypo for probably 10 years and then it nearly killed me as the diagnosis came only just in the nick of time and after having to justify that it was not just depression. I am obsessed with it because I want to feel as well as possible again and this site has been a godsend. No doubt one can have concurrent illness but given the pivotal role of the thyroid gland - it affects everything as I know only too well from when it gave up the ghost - one has to seek to maximise ones chances of the best quality of life possible. Even more so, when real options are simply not forthcoming from the UK medical profession, if standard treatment brings less than desirable results. The day I stop obsessing will be the day I feel properly well again or the day I die!
When I was new on here I was jumped on for daring to mention fibromyalgia and was told that they were 'rubbish diagnoses'. There are several comments on here to suggest that fibro and ME are really undiagnosed hyperthyroidism. Forgive me if I misinterpreted your comment above but you mentioned that people were undiagnosed with thyroid problems because 'the TSH didn't convey a thyroid gland problem'. I'm sorry but I didn't see the relevance of reinforcing the idea about 'the yuppie flu' even if you were only reporting what papers say. They were saying it about ME in the 80s and the fact that they're still saying it thirty years on is abominable) although I thought this derogatory phrase had died out with the 80s. It was actually ME and not Fibro they said it about because the condition of fibromyalgia wasn't named as such until the 90s. This doesn't mean that it is a 'new' illness - it's just an old illness with a new(er) name. ME has been named for a lot longer, at least since the 1950s (I believe)
My early comments on introducing myself included my belief that my FMS fell into the FMS as manifestation-of-hypothyroidism category in line with John Lowe. My post was published in the magazine with a response from the editorial that included...we at thyroid uk believe the reverse. If felt a bit set up but had to many other problems to argue the toss.
I couldn't agree with you more; I've read so many posts where people jump to the conclusion that every new adverse condition they experience must be due to the thyroid, when often there could be another, just as plausible, explanation. The real problem is that equally as often, people start messing about with their meds and make a problem that might have got better on its own even worse and upset their thyroid management to boot. Although it can cause many problems (and God knows, most of us can personally testify to most of them) we should also beware of it becoming the great white elephant in the room...
Good point. I hope you're recovering steadily now.
I ascribed symptoms to a bipolar episode (diagnosed in my teens after extensive tests to rule out physical illness and private annual thryoid tests into my late twenties). I failed to seek medical attention for almost a year (even though I'd become aware that many of the symptoms weren't bipolar) until a lump appeared in neck. I'd been suffering spiralling Hashimoto's swinging from hyper to hypo and back which made me very ill. The nodule, removed because it was compressing my windpipe, made breathing and swallowing difficult but otherwise wasn't responsible for the adverse symptoms. Biopsy post hemithyroidectomy proved to be positive for Hurthle cell carcinoma.
It is important to acknowledge that illness can strike at the healthy and less healthy population and may not be connected to diagnosed chronic conditions although recovery can be more difficult or delayed because of existing conditions.
It's hard not to get obsessed with thyroid problems, when I and many many others have been well most of our lives,and suddenly get all the problems with our thyroid. I was not treated properly for 17 years, doctors just didn't want to know,and who am I to question them !! Thanks to this site I am learning and finally on the road to better health. I also agree with reallyfedup123,the changes in food are I believe making people ill ,chemicals,preservatives etc.Bev.
I have to admit to being somewhat obsessed with mine at the moment. But I guess that's because I was very well generally until this all kicked off! So I want to be back there! Until I get my thyroid and vits/minerals levels back to where they should be, I remain convinced that all my symptoms are related to that. I might think differently once I've achieved that, but for now obsession is the way forward
Good for you, its really important that you persue the path to better health that you believe is right for you and I really hope that you get back to the good level of health that you have previously have had. I just find it really hard when I read posts dismissing depression, ME ect as health conditions in there own right. X
I don't know enough about ME to comment really, but depression I do know about, and I totally agree it can exist in isolation as well as a symptom of thyroid issues.
I totally agree with your post, Hypo! We should be looking at ourselves in the round. I am also appalled by the same people who post on here to diss ME or Fibro or any other condition that isn't necessarily a hypothyroid problem. Yes, some people will have been misdiagnosed but here's something. I wasn't diagnosed with fibromyalgia for years. It went undiagnosed for years and when I got the diagnosis (I pushed for it) it was like a Eureka moment. Isn't it bad enough to get the disability deniers from the health insurance companies and the DWP re Fibro and ME without coming on here and finding the same? Comments about the 'yuppie flu' are not helpful and make me want to abandon these boards for good.
Please can everyone remember that everyone is entitled to their opinion and no one has a definitive answer to any of these health questions. That is, after all, why are all here... to learn from other people's knowledge and experiences.
This is a timely read for me. It is tempting to pop a bit more when I'm feeling like...rhymes with height.
Yes, I also find that extrinsic thyroid factor is no magic bullet - tending to be a bit more fragile without the bodies own perfect mix. I do know that thyroid hormone replacement significantly reduces and sometimes eliminated my FMS symptoms...and I must ride with the flare ups that come through variety of stressors.
I must ride the flare ups
I must ride the..
I hope you are a good way past your flare up. Nasty. Winter does not help.
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