I was diagnosed with Hashimoto's 13 years ago after 2 years of being misdiagnosed .

[Mikiviki]

I live in Italy, went to an endocrinologist who put me straight on levothyroxine and according to my blood tests, tweaked my doses. I never felt well. I began to see the light after about 5 years but it wasn't really being well. I had always watched my weight but now it was not a struggle but a battle (I count myself lucky only a stone) tiredness, strange sweats nothing to do with menopause still plague me. I can lie or sit still, I am fine, but as soon as I start to do anything vaguely energetic, I sweat....all over. It's life changing, especially in winter as you can't go for a walk in the cold and start sweating. I never know what to wear and am always in layers putting on and taking off. I have lowered my medication to the lowest possible in order to have some energy, but the sweats are still there.

Then I have tried the less conventional doctors. I see a well known doctor in England and I am on and have been on all the adrenal supplements and thyroid supplements, all the necessary 'thyroid friendly' diets.

I hate talking doom and gloom but can we really hope to get better. Surely if there was a way wwe would all have been enlightened by now. Surely a doctor wants his patients to recover ? It must be good for his image too.

I really don't know where to go from here but I guess I am resigned to taking life one day at a time.

[editfmrt]

Hi - so sorry to hear you are have had such a horrid time for so long. You have my deepest sympathy.

I'm not sure if there is anything you have not tried already and having a quick look at your postings I can see you have tried lots of approaches.

Do you keep a record of your blood test results and monitor this against your symptoms and dose of medication? Have you tried monitoring your basal temperature?

The thing that stands out for me is that you have tried to reduce your medication in order to reduce the horrible sweating you experience. Although sweating is a frequent symptom of over active thyroid I can vouch that this is not necessarily the case. I was extremely hyperactive but didn't sweat at all and was freezing cold all the time - the opposite of the text book cases. This was one reason why I was misdiagnosed. I have also heard of others on this site who are hypothyroid but cannot tolerate hot weather and fare better in cold weather. What this tells me is that we as individuals do not always display typical text book signs and symptoms.

My theory is that thyroid disorders and resultant metabolism affect the way the body manages temperature and it can go completely up the creek. Perhaps you are one of those people that display non typical symptoms.

You say if you sit perfectly still you don't sweat. I'm not medically qualified but I would think that if you were actually over medicated you could have some symptoms of sweating and overheating without exercise. Do you have other symptoms of overactivity in addition to the sweating to support reducing your dose? As an ex hyper person myself I would recognise the signs very quickly, e.g fast pulse rate, palpitations, tremor, anxiety, nervousness to name a few.

Is it possible you are actually under active and that it is just the physical strain of exertion that causes you to sweat? Perhaps with optimal thyroid levels your reaction to exertion will improve and reduce the sweating.

Sometimes the only way to get to the bottom of this is to take a very systematic and measured approach - analysing and recording all the symptoms against the dose and blood test results. Hopefully this will produce a light bulb moment when you have the full picture. Easy to say but very hard when you are feeling so poorly.

p.s I am assuming you have tried T3 and or NDT?

Sorry I can't be more helpful

[Mikiviki in reply to editfmrt]

Thank you for your lovely detailed reply. In Italy I can test whenever I want. In fact I do so regularly . This 'broken thermostat is a constant even though my tests are within range. Taking Nutri thyroid alongside levothyroxine I was able to reduce the levothyroxine by some degree as it helped in my case especially t3 go up. So I realized and was told to bring down levothyroxine from 75/100 to 50/25 . However when I am in a situation of e.g. Coming from the cold outside into a warm room my whole body starts to sweat. And vice versa. Should you see anyone by the shop door with a pile of clothes either putting on or taking off....that's me!!

I think it comes with the illness as you say we are all different

[tegz in reply to Mikiviki]

Have you ever had a head injury enough to give concussion?

The other thing is estrogen levels- did you ever have low readings?

[Mikiviki in reply to tegz]

No head injury and strangely enough high estrogen .. In fact I was very late going into menopause (58) even my endo was surprised. And these are not hot flushes. I do get one or two but its a whole different sensation .. Thanks for replying

[tegz in reply to Mikiviki]

That may make sense- just that low androgen gave me cold sweats in a November walk [I suspect] Couldn't make out why at the time but later checks made me wiser. It could have been the over emphasis of estradial which would parallel your situation, possibly. More a cold sweat, than hot!

[susymac in reply to tegz]

I'm curious, hope you don't mind me asking but what effect would having had concussion make to any of the above symptoms ?

[Mikiviki in reply to susymac]

I have no idea about head injury

[PinkNinja in reply to susymac]

A head injury can damage the thyroid (if the neck was involve, i.e. whiplash type injury) or cause pituitary damage, which can then affect thyroid and other hormone levels. Losing a lot of blood during childbirth can also cause the pituitary to not function properly.

[susymac in reply to PinkNinja]

ah thanks, just wondered as I had a head injury as a child resulting in concussion, fortunately I had a very caring mother whose answer to going over the handlebars of my bike at high speed was for me to have a nice sleep in front of the fire..........

[tegz in reply to susymac]

It's probably unlikely that a prepubitary event would not be noticed in growth development -on the pituitary side of things -but anything later on well known to cause problems, too.

BP regulation and hormones, both.

MRI's are stipulated before hormone treatments for this reason - but too easliy missed out by neglect.

[susymac in reply to tegz]

I was never taken to a doctor as a child, not that I was never ill just never taken to a doctor. Ive also been given hormone (eostrogen) treatment without ever having an MRI, although it was the wrong treatment anyway as it turns out, being undiagnosed thyroid problems (30+years) that was always the problem. I did used to faint a lot as a child and was small for my age but as I was never taken to doctors it was never noted along with everything else.

[tegz in reply to susymac]

Sounds about right, Susy!

I hope things are steadier now.

[Mikiviki in reply to PinkNinja]

My mum had a traumatic head injury when she was already hypothyroid . She went on to develop a strange illness then called 'visual agnosia' which means 'we don't have a cure for you and we don't understand what 's wrong'. The Docs did think that the illness was related to the blow to the head though

[editfmrt in reply to Mikiviki]

It's good you can easily get tests there in Italy. I understand now what you mean about reducing thyroxine. I didn't realise this was in conjunction with other meds so sorry if I missed something.

Not sure if this article from the second paragraph can give you some pointers. I'm sure you have probably looked into all the possibilities yourself already so again aplologies if it is just another usless piece of information:

medicalhealthtests.com/arti...

Don't give up the quest to find a cause and a solution - there is a solution somewhere it's just such a struggle to find as you will well know.

Good luck xx

[Mikiviki in reply to editfmrt]

Wow interesting. It is all connected to the thyroid. I'm not sure it's treatable but at least someone recognizes the problem! Thanks !