Still not well

[mountainice]

Hi, I am feeling increasingly unwell from when I have posted before. I haven't been back to the doctor yet. I have had muscle pain for 18 months or more, now the pain is in both shoulders, some days worse than others. Lifting my left arm can be difficult. Today I can barely walk as I have groin and top of thigh pain - started last night as I was out walking. I have had this before and it usually goes off overnight, but not this time, hope it will ease. I have swelling below my knees on both legs going towards the inner part of my leg above shin. Had this quite a while but the swelling has got bigger on left leg. Dizziness and spaced out feeling on a daily basis. Dark circles under eyes and a general feeling of 'not right'. Often want to cry or even scream (had a screaming/panic turn in choir in March), but this is not the first time over a few years where I had a panicky feeling. Often have days where I just sit for a few hours. Continuing bad stomachs on and off. Insomnia for 20-25 years. Sore mouth, irritating feeling in throat so I have to cough. I can't even think of all the symptoms! I have started self-injecting B12 to see if that makes any difference to the queasy feeling I get a lot, but it hasn't made a difference so far but perhaps too early to tell as I have only done 3 SIs spaced 4 days apart, plus my usual nurse jab. My recent tests in March showed

Creatinine 60umol/L (range 60.0 - 120.0)

TSH 3.5 (0.3 - 5.0) (and it has been up to 5 over the years) no treatment

Free T4 13pmol/L (9.0 - 25.0)

Free T3 4.3pmol (3.5 - 6.5)

I have had TPO tested previously but they won't do TgAb

Any thoughts please. Like many people, I am fed up feeling unwell and people telling me to think positive, other people have worse than you, etc etc.

[SlowDragon Administrator]

Suggest you do the Medichecks Thyroid plus ultra vitamin test

Tests TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies

Most important it also includes vitamin D, folate, B12 and ferritin

Clearly B12 will be high

Do test as early as possible in morning and fasting for highest TSH

[mountainice in reply to SlowDragon]

I thought that should be the one, thank you. I think my D should be fine as I got the level up to 200 and still take my regime of 10,000 iu D daily, plus magnesium and K2. Ferritin hasn't always been up where it should be but wouldn't hurt to check. A doctor told me folate not important! What! Crazy. Just a bit scared of the finger-prick as heard stories where people say hard to get the blood out. I know you can pay to have it done somewhere but that adds to the cost. Anyone on here done their own finger-prick test and found it easy?

[SlowDragon Administrator in reply to mountainice]

Too much vitamin D is not good thing

Over 150nmol may be too much

Look at reducing to a maintenance dose of vitamin D. May be 2000iu. Trial and error what each person needs

But test before reducing

Plenty do DIY finger prick test

Personally I get private blood draw, as there's a suitable clinic near me

[mountainice in reply to SlowDragon]

From what I've read 200 or over is optimal for D ??

[SeasideSusie Remembering in reply to mountainice]

mountainice

From what I've read 200 or over is optimal for D ??

Where did you read that?

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

vitamindcouncil.org/about-v...

How do I know if I have taken too much?

A blood test to measure your 25(OH)D levels can tell you whether you have too high of vitamin D levels. If your 25(OH)D levels are above 150 ng/ml this is considered potentially toxic and potentially harmful to your health. You know if your 25(OH)D levels are toxic by a blood test to measure calcium. If calcium is high and 25(OH)D is high, then you are getting too much vitamin D.

Very high levels of 25(OH)D can develop if you:

take more than 10,000 IU/day (but not equal to) everyday for 3 months or more.

Are you also taking Vit K2-MK7 - D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

As your level is so high and you have regularly taken 10,000iu daily, I would ask your GP to test calcium level.

[mountainice in reply to SeasideSusie]

Yes, I am taking K2-MK7 as you will see above, plus magnesium as I followed the protocol of a Vitamin D deficiency group. I was trying to attach a chart but there doesn't seem anywhere to attach it. The chart says a good target is 80ng/mL or 200 nMol/L. Apart from this I have read it in many articles, which I can't find at the moment!

[mountainice in reply to SlowDragon]

this is in nmol of course

[SlowDragon Administrator in reply to mountainice]

200nmol is the maximum recommended by most testing companies

UK vitamin D testing by NHS states result above 220nmol considered "high" and increases risk of vitamin D toxicity

[MaisieGray]

The problem with hip and groin pain is that it can be the result of a problem in that area; but equally it can be reflected pain from somewhere else entirely. In my case, investigation into my own hip and groin pain identified I have both kyphoscoliosis (curvature in two planes) and deterioration the length of my spine. I'm not suggesting that is the case with you, but making the point that not everything is necessarily thyroid-related or can be ameliorated with improved dosing, and that sometimes its wise to look beyond it whilst you also address any under-medication that might be causing your other issues. Xrays to your hip and back might be a good start point if only to rule out certain things.

[mountainice in reply to MaisieGray]

I am not on any medication at the moment, apart from B12 injections once a month and just started SI myself.