I was diagnosed with hypothyroidism in 2013 . I had become very ill by the time a dentist suggested my thyroid be tested . I'm on a dose of 225 mcg of levothyroxine .
I am overweight and I am struggling mentally with this . I walk 5 miles a day too and from work , I am on my feet at work all day also amd I'm a lone parent so I'm always pretty busy / active .
For over a year I have suffered with pain . I did got to my Gp and was told levels slightly low but to stay on the same dose . Take vitamin D .
I'm getting to the point where the slightest bump or even touch bruises or causes pain for quite a long time. For example dusting cobwebs off the ceiling has done something to my rotator cuff and I currently have limited movement and again pain!. A simple task has caused this ?
I'm booked in to see a private endocrinologist in a few weeks but I'm not sure if this is the correct route to take .
My joints hurt everyday , once I stop at the end of the day and rest I'm very stiff and in alot of pain . I have constant plantar fasciitis that will not go away .
I have reynauds disease
My finger turned blue recently which was painful . Lasted a few hours .
Despite the daily exercise and busy life I can't lose more than a few lbs .
I just feel so frustrated , fed up and tortured with pain.
Has anybody else suffered with this and if so , is seeing an endo the correct thing to do ? I really don't know anymore .
Thankyou for taking the time to read this .
Written by
Alioliwoods
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In answer to your initial question: quite possibly. Anything and everything can be connected to thyroid problems. You can get all sorts of symptoms anywhere in the body, because thyroid hormone is needed by every single cell in your body to function correctly.
I did got to my Gp and was told levels slightly low but to stay on the same dose .
Which levels was he talking about? What did he test? Do you have a copy of your latest blood test results? If not, ask for a print-out at reception. It is your legal right to have one. But doctors don't like us knowing too much about our disease, so they use vague terms like 'slightly low', which are meaningless. You need to know exactly what was tested and exactly what the results were.
225 mcg levo is a highish dose. So, I'm guessing that you are a poor converter and need your FT4 quite high to get enough T3. Forgive me if I'm not being clear, but I have no idea how much you actually know about the thyroid and its treatment. I don't want to over-whelm you with too much information straight off.
You need full thyroid testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
It's doubtful you'd get them all done on the NHS, so would it be possible for you to get tested privately?
You say you take vit D. Did you have your vit D tested before starting? Do you also take its co-factors: magnesium and vit K2-MK7? Vit D won't do much for you unless you take magnesium with it.
How about B12, folate and ferritin, have they been tested?
It does sound to me like you're suffering from low T3 levels, but your doctor wouldn't know anything about that. None of them do. As for endos, you need to chose your endo carefully. Most of them are diabetes specialist and know nothing about thyroid, so aren't much help. But, even if you manage to find a good one, it would be a good idea to get some private testing before seeing them.
One last thing, for the moment, be careful not to get too much exercise. It won't help you lose weight, and might actually make you put more on. Be sure to get as much rest as you can. And no low-calorie diets because they won't help, either. You need plenty of good protein, good fats and lots of fresh fruit and veg.
You have a very hard work/life balance with much responsibility and I suspect your thyroid hormone replacement - T4 - Levothyroxine needs adjusting and this throw away comment from your doctor is simply galling :
I would delay this private appointment until we have the relevant private blood tests so we can talk you through what all the results and ranges mean, and advise you of the questions you need to ask and your next best steps back to reclaim your health and well being.
In short - T4 is a storage hormone that needs to be converted within the body into T3 which is the active hormone which runs all your bodily functions including your physical, emotional, mental, psychological, and spiritual well being, your inner central heating system and your metabolism.
Some people have trouble converting the T4 into T3 - and reasons for this can be non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.
So, first off - if you get a private blood test for a full thyroid panel to include the vitamins and minerals, thyroid antibodies, and inflammation - usually called an Advanced Thyroid blood test ( around 10 analysis ) and we can then explain more fully how the results impact your Quality of Life and suggest your next best step back to better health.
On the list of private companies who take the blood draw I believe between them, Medichecks and Blue Horizon cover the country offering a nurse home visit which I find the less stressful arrangement though it does come at an extra cost, but I just do a full test yearly as I can't get this detail through my local NHS surgery.
You need to make an early morning appointment for the blood draw and do not take your T4 medication until after the blood draw otherwise we are measuring what you just took rather than what your body is holding on to - similarly stop any vitamins and minerals around 7 days before the blood draw so we measure what your body is holding.
Once with the results - start a new post with the results and ranges and you will be talked through, line by line, what it all means and considered opinion will be offered.
There could be some things you can do for yourself, though an endo might need to be seen, but there again, you need to see an endo who we know to be sympathetic and prepared to help and support and possible suggest further, additional, thyroid hormone medication.
Thyroid UK the charity who supports this forum hold a patient to patient recommended list of NHS/Private specialists and endo's so it makes sense to get this list for further options.
This is where we all start and the help and support on this forum is from fellow patients who have been able to turn things around - and so will you - as you too become your own best advocate.
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