Hello everyone it's been a while since I posted. So my symptoms are as follows Fatigue
Muscle aches pains and spasms
Backache when I walk or exercise
Pins and needles in feet and hands
My fingers hurt when I clench my fist
My knee caps get sore very quickly I cant have my legs bent in sitting position too long coz of it
Breathlessness
Need to empty my bladder more (sometimes struggle to control it as in I have to wear a pad just incase I leak)
Boul movements keep changing
Blur vision
Unsteady on my feet as in unbalanced
Forgetfulness
Confusion
Mood changes
Cant talk properly
Pins and needles muscle spasms
I sometimes drop things
Stiff neck stiff shoulders feeling sick headaches
On occasions ringing my ears and sudden change of appatite headache
Feeling sick
Cramps in foot sometimes calf muscle
Random pains in random places
Sometimes I see like lots of different colours in my eyes.
I cant move my head too quickly either my weight is up and down I was losing weight then the exercises I was doing really did flare up my symptoms. So I've put it back on. I also get pains that feel like someone is pricking me with a cold pin in certain areas. I ended up in hospital coz of my symptoms but home again same day as they thought it was low calcium and vitamin d again they did a full blood count and my levels are fine then I had to do these random physical tests then was told about MRI. My symptoms are really effecting my day to day living I'd still like to do exercise but dont know what type I should do it's bad enough that I no longer have a thyroid and that's my parathyroid glands mo longer work so weight gain is already an issue. I need the calcium in my diet and worry that if I switch low fat dairy products I wont get the right amount of calcium. I am on adcal and alfad also thyroxine and like I've said exercise sets my symptoms off back pain etc so looking for advice on diet and exercise can anyone help please
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Kirstylstocks
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I need the calcium in my diet and worry that if I switch low fat dairy products I wont get the right amount of calcium.
Why would you want to switch to low-fat dairy products? That would be a big mistake, the body needs fat. And, if you're worried about your weight, eating fat doesn't make you get fat. That is a myth. Low-fat diets are very bad for your mental health. So, keep on with the full fat dairy.
If you are taking adcal, which is vit D + calcium, you should also be taking magnesium. Vit D and magnesium need each other because they work together.
You also need to take vit K2-MK7, because taking vit D increases absorption of calcium from food, and the K2 makes sure it goes into the teeth and bones, and doesn't build up in the soft tissues - as calcium supplements are very likely to do.
When did you last have your thyroid tested? Sounds to me as if you are under-medicated to have all those symptoms. Does your doctor only test TSH? That is so very wrong. You need TSH, FT4 and FT3, to know exactly where you are.
Some of your symptoms could well be due to nutritional deficiencies. Even if you have the best diet, you could still have nutritional deficiencies due to low stomach acid. So, as well as vit D and calcium, you should also get B12, folate and ferritin tested.
I too have Graves Disease and had my thyroid ablated with RAI in 2005 and became very unwell about 8 years later.
I think I might have mentioned Elaine Moore to you before, and you might find her website of interest. She too has Graves and went down the RAI route but continued trying to cope with debilitating symptoms that the medical profession couldn't help her with so she started researching Graves for herself, as it does appear to be a poorly understood and badly treated autoimmune disease.
There are now several books and a very well researched website offering support and advice to all Graves sufferers world wide and where I started my recovery back to better health, as considered a conundrum by my doctor.
There appears to be overwhelming evidence that when you haven't a fully functioning working thyroid, you might do a bit better on a T3 + T4 combination of thyroid hormones.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. The body runs on T3 and the average person uses about 50 T3 a day just to function. T4 - Levothyroxine is a storage hormone and your body needs to be able to convert this into the T3 which is said to be about 4 times more powerful than T4.
Your conversion can be compromised if your ferritin, folate, B12 and vitamin D aren't maintained at optimal levels and conversion can also be compromised by chronic pain, ageing, dieting , and physiological stress -emotional or physical :
Some people can't tolerate Levothyroxine, some some take T3 + T4, some people take T3 - brand name Liothyronine alone and some people take Natural Desiccated Thyroid which is a pigs thyroid, dried and ground down into tablets, referred to as grains, which I now take and have my life back, near enough.
We need to know what medication you take and a full thyroid blood panel to include the vitamins and minerals in order to rule this in or out in your current health issues.
Can you add most recent thyroid and vitamin results and ranges
Strongly recommend you get FULL thyroid and vitamin testing privately if not had everything tested
Most of these symptoms can be attributed to being under treated on levothyroxine and low vitamin levels
Like you I was told I had MS ...I was in wheelchair....fortunately the most helpful consultant I saw was the MS specialist who, after MRI and battery of testing ....who assured me it wasn’t MS .....he had an Aunt with hypothyroidism....he said he was pretty sure I was under treated and to try increase in levothyroxine ....more on my profile
Essential to get FULL Thyroid testing and vitamins.
What vitamin supplements are you currently taking?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially after Graves
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Low magnesium frequently causes cramps and twitching muscles
Low vitamin D painful bones and joints
Low B12 - feeling drunk, like walking on a boat, pins & needles, loss of words, enlarged tongue and urinary incontinence, ringing in ears (tinnitus)
What are your actual results for vitamin D
NHS only test and treat deficiencies....on levothyroxine we need OPTIMAL vitamin levels
Eg vitamin D over 50nmol considered adequate by NHS. Optimal is at least around 80nmol and around 100nmol maybe better
Low Vitamin D often has low magnesium too
B12 - anything within range considered fine by NHS, range typically 180-680. On levothyroxine we need B12 at least over 500....sometimes higher
Ferritin - anything within range considered ok by NHS, range typically 15-150. But on levothyroxine we need ferritin at least half way through range...minimum of 70.
Poor gut function, change in bowel habit, IBS and bloating suggests low Ft3 and/or gluten intolerance
Please make sure they’ve considered B12 and folate deficiency—both are commonly very low when you have hypothyroidism and the symptoms of deficiency can be very similar to what you’ve described. Don’t start supplementing immediately though—it’ll just skew the results if this is yet to be ruled out.
As with thyroid disorders, doctors can be welded to their opinion that a result in the “normal” range means everything is fine but again, that often isn’t the case. Make sure you get your actual test results and post them here.
If it is MS, it can take a long time to get a diagnosis, which can be immensely frustrating if it does turn out to be the case. A friend’s wife had to wait for several years for consultants to dot all the i’s and cross the t’s—frustratingly, it’s often only when a diagnosis is finally made that you get access to specialist support.
I have had an under active thyroid now for forty years. It is a roller coaster. I can relate to some of the issues you face. Finding that exercise causes pain is something I have found. Low impact would be good. I have a cross trainer but even that sets things off sometimes.
It is trial and error I’m afraid but don’t give up. One thing I do believe is that we are all different and not everything is uniform in their requirements.
Have you been seen by a good endocrinologist to make sure you are on the optimum level. The GP will only look at one range which may not help you. You have to be persistent and ask for all your blood test results.
I find lactose free milk is good and anything free from helps with digestion.
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Slightly elevated TSH
Stopping levothyroxine
Anyone else with peripheral neuropathy?
Can I go back to last fall?
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