What now?

[Rubycubes]

So a week ago I had an appt at the chronic pain clinic (recommending meds I don't want and very little else) and the next day I had gp appt. Lovely man but that's as good as it gets; why oh why can't they do the thing that might help instead of the exact opposite?

I got the medichecks blood tests done and posted them here, Clutter helpfully suggested a small increase in levothyroxine might be beneficial so I asked would he consider it, would he hell. It's a controversial area which may require a full appointment on its own to discuss it and you have been discharged by endocrinology (and an increase in levo is very unlikely). But here have all the pain meds you want, what's that, the anti d and mood stabiliser you've been on for years aren't working, you want to stop them, well sure here try a different one, we can mess around with types and dosage, just say what you want to do. I want to sodding well stop pain meds and anti d's and have something that might just help. But sure that would be ridiculous wouldn't it?!

Refrained from telling him to sod off especially when he said the short list of physical issues I had written down in case I forgot anything was perhaps a little bit of anxiety....

Informed him I wouldn't be there at all but for the fact that my husband had made the appt and came with me. Frankly I wouldn't have bothered as it's a waste of time and I'd rather be dead already... His main concern was my mindset, which might be greatly improved if they actually tried to actively assist with the physical issues... Really at the end of my tether.

But sure who wants to be well anyway... Supposed to get more bloods and go back and see him in 3 weeks, just so he can tell me my TSH is in range.

[SlowDragon Administrator]

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Your vitamin D and ferritin are too low.

Vitamin D needs to be around 100nmol for most of us with thyroid issues to gain improvement

Ferritin is MUCH too low.

Are you supplementing B12?

Look at SeasideSusie many detailed vitamin posts for advice on what and how to supplement

Eg

healthunlocked.com/thyroidu...

When these are too low they stop Thyroid hormones working.

As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

[Rubycubes in reply to SlowDragon]

Thank you SlowDragon.

Not supplementing with b12 and thought as result is quite high that I shouldn't. Take a magnesium supplement and prescribed AdCal though probably a low dose.. No other supplements at present, shall look at getting ferritin.

Just feeling very overwhelmed tbh. My mum has PA and both parents plus one of two sisters hypo.. I'm only one so far that has Hashi's.

[SlowDragon Administrator in reply to Rubycubes]

So you have never (or not in last 6 months) supplemented B12?

High B12 without supplements can actually indicate there is a B12 or B vitamin issue

See this post on PAS

healthunlocked.com/pasoc/po...

You might want to consider doing active B12 test, especially as there is PA in family

Have you had full testing for Pernicious Anaemia and intrinsic factor

Perhaps post on PAS about this - low ferritin may be linked too

[Rubycubes in reply to SlowDragon]

No, took a few months of b12 supplements about 5 years ago but that was it. Never taken them since, recently had the PA test which I requested because of mum but was told levels in range so nothing further suggested and because it was so high I figured it was fine.

[humanbean]

Regarding your B12 you might want to read this :

The pathophysiology of elevated vitamin B12 in clinical practice

qjmed.oxfordjournals.org/co...

It's a bit hard-going, sorry.

[Rubycubes]

Thanks for the info thus far. Much appreciated. I had a feeling that it wasn't going to be straightforward, is it ever. So something else to argue the toss with gp over. A lot more reading to do as well.

[SlowDragon Administrator]

Personally I often had high above range B12 (though not as high as yours) until I took vitamin B complex to correct very low B5. I was getting increasing peripheral neuropathy about a month after starting vitamin D supplements.

I found this article very helpful and on the strength of it started vitamin B complex. Peripheral neuropathy faded quickly after about week or so.

drgominak.com/sleep/vitamin...

Almost immediately I started vitamin B complex, started to get pins & needles (for me a classic sign of low B12) so added sublingual B12 as well. Pins & needles slowly faded after few weeks

I still take vitamin B complex, but phased out extra B12 once symptoms went

Hashimoto's seems to upset the gut so much. Improving gut function is the key to getting better in my view

[Rubycubes]

I do have peripheral neuropathy as well. So hard to navigate all this..