So it’s all been going much better for me... b12 injections got my brain working again, I’m back at work and have a reasonable amount of energy (probably nowhere near ‘normal’ but it feels amazing to be able to cope day to day.
I’m due another blood test in a couple of weeks and expecting it to be pretty positive. However..., I’’m so swollen. I’m so used to feeling saggy and ‘old’ skinned, this is just bizarre. Big waxy solid legs!😳.
I’ll mention it at my next GP appointment but wondered if anyone has any idea what’s happening now?!
I don’t feel I have any right to be complaining (still!) now I’m feeling so much better but also I don’t want to pop now I’m on the right road😃
All advice gratefully received!! Thanks in advance!
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Jooju2004
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Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.
Thanks for the replies and all the info. After my last blood tests my GP prescribed folate, iron, vitamin D and also a course of B12 injections (with ongoing B12 3 monthly) . I’m due to have another full blood test to check these levels in about 6 weeks.
No I haven’t had the full thyroid tests... just the TSH and FT4 which both seemed to be going in the right direction. I guess because I feel so much better I wasn’t sure if I needed to check the other things out, but from reading on here it does sound like I need to . I figured if the majority of hypothyroid sufferers have Hashimoto’s my GP will say there’s no need to test anything else but then I suppose I need to know so I can help myself a bit more.
I don’t tend to have any gut issues so was assuming coeliacs wasn’t an issue but then I’m so swollen I think it’s worth checking everything. I bet my gp won’t test T3/antibodies etc but am I right in thinking they have to act on the results if I get them done privately?
Such a faff ... how much must it cost the nhs in not treating people the best way possible? X
Pharmaceutical companies make money out of ill people.
You do not need any gut symptoms at all, yet still benefit from strictly gluten free diet
But getting coeliac blood test first to rule it out recommended. Otherwise if you find significant benefit they want you back on gluten for testing
The fact you have significantly impaired gut function leading to low vitamin D, folate, B12 and iron suggests you have leaky gut and/or malabsorption and/or low stomach acid this is as direct result of being hypothyroid, probably Hashimoto's
Gluten intolerance pretty likely. Far more are gluten intolerant than coeliac
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
Thanks again ... I’m currently trying to wean myself off omeprazole - been on it for years and Only since my hypothyroid diagnosis realise that I probably shouldn’t have been given it... I was misdiagnosed as post menopausal (at 41) and it was assumed that my reflux type symptoms were because of too much acid... make sense that it was the opposite all along. I think the ompeprazole caused the malabsorption - or certainly didn’t help, so I’m hopeful once I kick the ompeprazole I may start to function better. X
Big waxy legs sounds like mucin a fat particular to hypothyroidism you can not pinch the skin above it if you Google there is a youtube video that shows you. I had mucin all over you need to be optimally medicated for it to start going. Most of mine gone after 3 years but it is stubborn on my legs especially knees to ankles. I have compression tights as it can make my legs ache. If anyone has any experience of getting rid of it on legs please let me know.
Mucins (/ˈmjuːsɪn/) are a family of high molecular weight, heavily glycosylated proteins (glycoconjugates) produced by epithelial tissues in most animals.
I don’t remember having it til these last few weeks ... which seems weird as I feel like my meds are at the right levels (or nearly) but it does sound like the mucin thing you describe. It stops at my ankles, I can’t pinch my skin and it feels just eurgh to touch. Is it something that is bad for our organs too, do you know? I can live with the way I look but don’t want it to be yet another health worry!
I’m in South Yorkshire. I think the only reason they let me have the injections is that they’re worried about a negligence claim for misdiagnosing me as post menopausal (at 41). Saying that, I understand the guidance is that you should be allowed them if there are any symptoms of deficiency so it may be worth arguing the point!
My concern is; if you have private blood tests and the GP you have doesn’t agree your ranges are below hence them not changing your thyroxine dose/or giving vitamin supplements accordingly?
I think you’re right. Saying that, every single one of the vitamin levels I asked them to test was technically just within range. I found various medical journal references about optimum thyroid function and optimum conversion of T4 requiring those vitamins to be at the top of their range. Sent them to my GP in an email and they agreed to let me increase those levels - and then couldn’t believe how much better I looked within a few weeks. Ridiculous that they don’t treat the patient, they just look at statistics, but fight hard enough and they should hopefully listen x
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. I figured if the majority of hypothyroid sufferers have Hashimoto’s my GP will say there’s no need to test anything else but then I suppose I need to know so I can help myself a bit more. 
x
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