Next autoimmune disease?

[helen_m]

Hi all

I'm pretty stable on levothyroxine and T3 although some vitamin levels had dropped (D and folate which I'm trying to correct).

I have noticed over the past year, strange symptoms which I'd marked as being thyroid-related though when I went to my doctor, he told me that not everything is related to the thyroid and promptly referred me to neurology.

My weird symptoms are: shaking on right leg and down right side of body, pain in toes left hand side which gets worse when taking B vitamins or vitamin C, dizziness and vertigo when I move my head, numbness and tingling in strange place, like tips of fingers, tips of toes, nose. I was thinking it was maybe B12 deficiency - but last B12 test showed middle of range (650 - 700) (I can get my results) and neurologist not interested in that at all and has decided to send me for an MRI and lumbar puncture as my body is apparently weak on the left hand side - I fear that he thinks its MS

Bit gubbed as I am technically feeling pretty healthy and doing lots of hillwalking and exercise and have lost weight too.

Does any of this sound familiar to anyone?

Many thanks

Helen

[shaws Administrator]

Do you take B12 methylcobalamin sublingual tablets? Has your B12 levels been checked and Vit D, iron, ferritin and folate. All should be at an optimum.

The new guidelines state B12 should be around 1,000. Ask if you can have a homocysteine blood test. This should not be high.

I hope nothing is found but it does sound as if you have something going on neurologically and its good they are doing tests.

Have they tested your blood for pernicious anaemia?

[helen_m in reply to shaws]

No blood tests for pernicious anaemia. I was taking sublingual B12 but stopped when I knew I had a neurology appointment in case they tested B12 - they didn't. B12 was last checked a few months ago and it was 672. My iron and ferritin are good, ferritin a few months ago was at 90. I know my D is down as I have been forgetting to take my meds for a good few months now (due to taking in the middle of the day, I keep forgetting it).

I will ask about the homocystine blood test and find out about the others too.

Thanks

[Jodelights]

Hi Helen. I have similar symptoms to you. I have loss of sensation over most of my body now, loss of sense of taste and smell (this changes often) I have Hypothroid, Fibromyalgia, Joint Hypermobility Disorder, Migraines and cluster headaches! (To name a few, yawn!) Two years ago I was diagnosed with Cryoglobulin Anaemia but am still really unsure what this is and how it affects me? Does anyone on here have any info? It would be greatly appreciated. TIA xx

[shaws Administrator in reply to Jodelights]

If you also have Fibro I shall give you a link for information. I am assuming you are on levothyroxine alone (for hypo).

I am sorry you have all the other complications too which must be very very difficult, to say the least. The link I'm giving you is by a Doctor/scientist/researcher and he was also an Adviser to Thyroiduk.org.uk. He also ran the Fibromyalgia Research Foundation/Thyroidscience/Dr.Lowe.com and stated that fibro is due to Thyroid Hormone Resistance and his patients recovered when on T3 only. Unfortunately he died due to an accident. His sites are now archived and links within may not work or sites not accessible but the information is good.

web.archive.org/web/2010103...

web.archive.org/web/2010081...

web.archive.org/web/2010103...

[Jodelights in reply to shaws]

Thanks Shaws. Yes on thyroxine. T4 and T3 not a problem. Thank you for the links x