What next? Treatment or more tests? Is it all in my head?

[kittysmummy]

Hi all

I'm not sure what to do next. To fill in where I am: Im 42, 50lb overweight, lots of hypo symptoms (but not feeling cold, in fact heat makes me sick), hypersensitive to smells & perfume (told it was migraine as a migraleve dose helps symptoms), not been happy for 6 yrs since only child born, terrible plantar fasciitis (>2 years), no energy, anxiety/depression, phobias etc. But long history of depression, after anorexia as teenager, glandular fever etc.

My test results 1 month ago showed this:

TSH 2.7 (0.2-4.5 mU/L)

Free T4 12 (9-21 pmol/L)

Total T3 1.9 (0.9-2.4 nmol/L)

TRAB (GP tested wrong antibodies!)

B12 248 (180-2000 ng/L)

Serum folate 6.6 (2.8-20 ug/L)

CCP? 0.5 (0-4.8) (I think my liver is ok!)

Haematocrit 0.358 (0.37-0.47 ratio)

MCV 87 (78-99 fl)

Looking back over the test results, I managed to get the practice nurse to retake a sample & test for TPOAB antibodies (I suspect she's written it down like that... She said she had never done one of these in her whole career!). I'm not even sure the lab will do it, as my GP said my results were "fine"!

Having had support here before, I know that I need to address my B12, as well as my TSH being higher than ideal - it's up from 1.7 last year. I am worried about my GP writing off my concerns because of my depression & eating disorder..

What can I do next? Has anyone tried Nutri Adrenal & Thyroid supplements? Should I try them & what are the doses people find effective? I'm going to get some sub-lingual B12 (methyl cobalamin?) and also increase my vitamins D, as I'm deficient in that (had private test earlier & it's that time of year...)

I'd love to find a doctor who doesn't just write me off but I can't travel to clinics outside Edinburgh (see above - can you imagine not leaving your home for 4 years?) and I know Dr Myhill isn't taking on new patients (and I'm not sure if she's well-regarded?).

Any thoughts really appreciated - I'm desperate to get rid of this pain & feel better!

[Hidden]

Have you had ferritin and Vit D tested?

[kittysmummy in reply to Hidden]

I had vitamin D done privately & it was low but not terribly bad. No ferritin unless it's got another name on results?

[kittysmummy]

Did I read right that b12 deficiency or anaemia can cause hypersensitivity to smells? Was that right?

[humanbean]

B12 - this is much too low - if you haven't supplemented B12 yet then it might be a good idea to get tested for pernicious anaemia and Active B12 levels before you start (supplementing with B12 can make the results unreliable). I'm not an expert on this - hope someone else can help. If you have been supplementing, then you need to make sure that what you are taking is "sublingual methylcobalamin" - tablets that are allowed to dissolve slowly under the tongue. Since your levels are so low you should be taking 5000mcg per day. Check out Amazon for reviews, and then shop around for the best price.

Folate - this is also too low - best results are got from supplementing methylfolate - sorry, I don't know dosage for this. A cheaper alternative, but much less effective, is folic acid.

CCP - this is a test used in diagnosing rheumatoid arthritis. I'd never heard of it before you mentioned it, so I don't know the significance. Here is a link about it - read all the blue tabs about the test :

labtestsonline.org.uk/under...

Haematocrit (also known as packed cell volume) : There are several reasons why this could be low - anaemia caused by low iron, B12 or folate for instance, but there are other causes as well. Do you have a ferritin reading? Have you ever had your iron levels tested? Improve your low minerals and vitamins and your haematocrit will improve as a result.

labtestsonline.org.uk/under...

Vitamin D - I had mild deficiency of vitamin D. I needed 3000 iU per day of vitamin D3 to improve mine into the healthy range. I was amazed how much better I felt. Don't assume because a deficiency is mild it isn't worth worrying about.

Your thyroid results : These clearly aren't great. Improving your nutritional status will improve your overall health, but if you still feel awful then self-medicating may be your only choice. The NHS is unlikely to treat you on the basis of your results.

The plantar fasciitis could be a result of being hypothyroid. Check out the symptoms list here :

hypothyroidmom.com/300-hypo...

What medications are you currently taking?

[kittysmummy in reply to humanbean]

So far just a multivitamin from Nutri: I bought their "adrenal" & "thyroid" tablets too but haven't started them as I wanted to get blood tests done first.

[Angel_of_the_North]

Your B12 is really low and your folate isn't good. It's already starting to make you anaemic. That could be causing a lot of your symptoms and be preventing your meds from working.

[kittysmummy]

Thanks all, I will try & get an appointment for anaemia testing - I'm anxious about going back to the GP but I think getting tested for pernicious anaemia & my ferritin levels are pretty essential. I might see if I can go privately, but it's very expensive, isn't it?