Was just wondering if anyone has developed a bone spur? I have one on the top of my foot - not a common place apparently! Was in excrutiating pain on that part of my foot, on and off, for quite some time, inhibited my walking, this was before the bone spur appeared.
Apparently they are generally associated with arthritis (hmm, I'm wondering about the autoimmune connection here as I have two autoimmune diseases already), but can be the result of trauma too. Or, and here's where it gets relevant - calcium deficiency! Which as we all know, we are often deficient in.
Anyway, just want your thoughts, comments etc. Thank you.
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korkykat
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I have one too. Mine is also on the top of my foot. It hurts if I wear shoes that press on one side of it - e.g. a strap going across one side of it. One particularly bad time I was laid up for 1 & 1/2 days with my foot elevated after meeting a friend and walking in a park on a pavement type surface. I couldn't put pressure on it. I don't remember any trauma to that part of my foot.
Now I'm really careful about what shoes I wear.
I was just reading yesterday about vitamin K2 mk4 and calcium. I had a bone scan when I was 21 that showed I had low bone density for my age.
Background: I've been chronically sick since I was 10 (33 now) with various health problems and diseases. I was diagnosed with AI thyroid disease in 2010 but left untreated, as the 'endo' told me I had to "wait for my thyroid to 'die', which could take years". I'm still trying to figure out what to do. I need to address my vitamin D levels (as I was severely deficient) and look at calcium - whether I'm deficient in that or what. I've started supplementing magnesium. I find it really hard to sort it out (buying supplements and doing private tests) as I have no income and rely on my parents for help. I guess... 1 step at a time.
Mabes, it's time and plenty for you to ask your GP to do another thyroid function test plus Thyroid Peroxidase (TPOab) antibodies if the endo is letting your thyroid die due to Hashimoto's. if you haven't been tested for ferritin, vitamin D, B12, folate and calcium in the last 6 months you should ask for these too. Make sure to ask for printouts of your results with lab ref ranges and post them for comment.
It shouldn't be necessary for private tests to find out your health status when you've been ill so long and are obviously not one of the 'worried well'. Your GP or specialists should be doing them.
If you and Korky are vitD deficient your GPs should prescribe loading doses of vitD followed by maintenance doses until you are in the optimal range >75. If you aren't deficient <20 and are in the less than optimal range <75 you may need to self supplement but it is still worth pushing for a scrip.
My unfavourite Dr. Numbers prescribed loading and maintenance doses to correct my vitD <10 but told me to buy folic acid for folate deficiency. I insisted on a scrip as money is tight but self supplement B12 as it wasn't deficient but was very low.
Clutter - thank you for your response. Please see my reply to Korykat.
In addition - I guess I was given a loading dose in 2011 as I was given 20,000 (is it iu or ui) weekly for 8 weeks. GP was asked by Royal Free Hospital to retest me for the vit D after 2 months, and to refer me to rheumy also (for erythromelalgia type sympyoms) and she never did anything. I stopped seeing her and gave up as I felt on the verge of a nervous breakdown at that point. I think the stress was causing me (further) adrenal problems and I just needed to try to get back my confidence a bit and recover. So I took my own high dose vit D3 that I bought.
I'm sorry you've had such an awful time, Mabes. Make sure to mention your thyroid history at your pre-op so they will test your thyroid function.
Yes, you were given loading doses of vitD and its a good idea you've continued to supplement as being housebound means you;re at high risk of deficiency.
I used Boost methylcobalamin B12 spray for a few weeks raised my B12 from just over 300 to 700. I now use Jarrows 1000mcg sublinguals.
I hope your surgery goes well and resolves your pain.
That's good idea - I'll really emphasise that and that it has not been tested since 2011.
I used the Boost one before. Interesting to know it does actually work. I think I'll look at the Jarrow option. I can definitely feel a 'boost' after taking B12. It gives me energy.
I'll continue on the Vitamin D supplementation so that I limit that problem. It definitely helped my bone pain. Used to feel as if my shin bones were rotten from the inside.
I'm hoping if I can get all these levels sorted out to being more optimal, then when I start NDT I'll be in better place to make the most of it. I'm going to get Blue Horizons home test so that I get a baseline - do you think I should get antibodies done?
I am just about to start reading Dr D-P's book. Hoping that'll consolidate some of what I've been learning.
OMG Mabes! You are being maltreated, or untreated! Where are you living in the world?
Waiting for the thyroid to die is nonsense. Mine is failing and consequently, now I'm on meds, still keeps swinging around from hypo to hyper. Plus mine is autoimmune which complicates things slightly.
Can you go back and get tested again? Sounds like you need to. Don't accept the crap response from your GP. Fight! It took me a long time to get diagnosed. Just kept going back. Think they had me down as 'the crazy lady', and I could see their hearts would sink every time I walked in the door!
Now too too long a time suffering, they have admitted defeat. I have got a referral to a specialist of my choice. But cos it's been so long, have got gut sensitivity and non alcoholic fatty liver disease! The more we wait, the more we get!
It's hard to fight when we feel so bad. But we have to. You have to. The reliance on TSH as a marker is crap. If you swing around like I did, chances are, when they test you, you will fit in their 'normal' range.
Sadly, you have to hope and pray, a test will hit home when you really hypo. That was my breakthrough.
I too am severely vit D deficient.
Please fight, with whatever strength you have left.
I was diagnosed by an 'endocrinologist' - found out later he was an emergency medicine doctor with an interest in diabetes who ran the 'endocrinology' dept at my local hospital. He was actually supposed to be figuring out why I'd grown 2 inches, and my skull, hands, feet had enlarged. He didn't believe anything was wrong there... I think because I've had M.E. since I was 10. Once you have that, many doctors don't seem to want to help you. I ended up at the Royal Free getting tested for acromegaly in the end. Never did figure out what it was but the discharging doctor (guessing a junior on rotation) said, and I quote: "well we don't know what it is, but whatever it is at least it won't kill you". So reassuring!! Plus I feel a lack of logic there.
So anyway, the autoimmune thyroid disease presented itself as hyper during a routine test - a nurse picked up my rapid HR and the fact I'd collapsed twice with SOB and sent me to the GP. He was okay - did test and gave me beta blockers. The hospital endo doc did not agree with my GP. He could apparently tell just by looking at me that I was not hyper. He said the lab had made a mistake! I think because he basically has told me I had grown because I was fat (!!!) the first time he'd met me - surprised half the nation is not 7 feet tall by now - he didn't think I could be hyper when he met me the second time and had by then received a letter from GP sharing the thyroid news. So I said test me again then. I
was mildly hyper still. He didn't do anything - they just kept me on beta blockers. When I looked back by requesting results from various sources, earlier tests prior to the hyper results showed a climbing TSH with a borderline low FT4. Then suddenly I was the other
ayway. I did have high antibodies but am not sure if just hashis or not.
After waiting some months, i ended up at the discharge with the 'let you thyroid die'... The problem I ran into was this:
The ranges used to be
FT4 10-25
TSH 0.4-4
Suddenly my area changed them to
FT4 6.3-14.0
TSH 0.3-6
You can fit nicely in the latter 2 ranges and feel really ill. I had FT4 of 10 on the old range and felt awful. My TSH has always been above 2.0 except during the hyper phase.
The ridiculous thing is, this doctor... He said to me: you have a very thyroidal face. I also have severe hair loss which I started to develop when I was 19. I have massive balding... A diffuse unpatterned alopecia. I wear wigs, head covers and sometimes nothing. Doctors clock it but never try to figure out why I have that - it mystifies then apparently. I have so many thyroid symptoms plus a mother who is hypoT. I don't really understand why the doctors are so blase about something that affects every cell.
I am awaiting surgery for endometriosis and I am guessing that during my pre-op assessment I'll get tested for my thyroid. Maybe it'll turn up a thyroid result that enables them to do something. It's in a different county to the one I live in, perhaps the ranges are different there. I've fought doctors since I was 10... been made to feel a head case, and I found that trying to fight them has caused me such damage mentally - I have extremely bad anxiety around medical establishments and their staff. I'm almost phobic of them now. I only went to the doc about my endometriosis type issue when I couldn't sit down on my underneath anymore (tmi!). I just don't trust them.
I am currently self supplementing vitamins and minerals to try to get them in good shape. I need to sort the vitamin D and calcium out. I found out I am gluten intolerant when I was doing an elimination diet for allergies I've developed. I've changed my diet to GF low carb high fat to try to keep my weight under control. I am planning on sorting my thyroid out once I have the surgery. I can't take much more tbh - housebound 95% of the time and in a lot of pain. I just have to help myself with the thyroid I think as I just can't see the NHS treating me properly. So I'm going to order private blood tests and go the NDT route.
Read your response to Mabes. My loading dose of Vit D at 20,000 whatevers x3 a week finished x4 weeks ago. They have just retested.
Told my GP yesterday that I was worried, as was so deficient previously, that I have been on zero vit D meds for a month! He just said, we have to wait for blood test results!
Asked him about calcium deficiency too as Vit D and Calcium go hand in hand. He just said, 'you can buy a supplement that does both'! Cheeky man.
Not stressing too much now though as have finally got the referral to a specialist of my choice in another part of the country. He tests all vit levels plus female hormones and adrenals. Hopefully he will sort me out, and I only have to wait until July!
Can I just say, I wouldn't have the knowledge I have today, nor the confidence, due to that knowledge, to fight, if it hadn't been for this forum. Thank you Clutter and everyone else who has helped along the way. I will try to do my bit and help others too where I can.
Korky, your GP gave you poor advice. It's not a good idea to take calcium without regular blood tests. Excess calcium can leach into the blood and can be dangerous.
I was on 40,000iu x 7 days followed by 2,000iu daily for 8 weeks. When retested I was 116 (75-200). i stopped supplementing for 6 weeks but resumed when hip and knee pain woke me at night. Since then 1've been supplementing 5,000iu daily. GP didn't test calcium and when I mentioned to endo calcium hadn't been test for 2 years he arranged a Dexa Scan. Calcium serum level and bone density are two different things in my optinion, one doesn't tell you the status of the other.
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Double Autoimmunities
Crosstalk between the neuroendocrine system and bone homeostasis 
Lost!
Anyone clued up on bone health please?
