Apologies first for longish post. I've been having fertility treatment for last few years and having TSH levels checked and managed using Thyroxin. My results have been all over the place and just recently had TPO checked and diagnosis of Hashimotos. My fertility clinic wants me to see an Endocrinologist BUT my GP has spoken to one and their response is "we don't need to see you, your GP can manage this".
Anyone with similar experience? Why is thyroid health not managed particularly well in UK? Only seem to be interested in TSH numbers - never had a discussion about symptoms!
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T74campbell
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They don't know anything about symptoms! They don't do it in med school. And, if you tell them about your symptoms, they just want to treat them as separate diseases, not improve the root cause! But, I think you'll find that it's not just in the UK that it's bad. It's a universal problem.
You're probably better off not seeing and endo because they often know less than GPs, and tend to mess people about a lot - unless you can find one that specialises in pregnancy. I believe they do exist.
But, there is not treatment for Hashi's, and no cure. An endo wouldn't know much about it. There are just things you can do for yourself, like adopting a 100% gluten-free diet. The main concern is replacing the hormone that your thyroid can no-longer make, whatever the cause. And, you have to make sure that your nutrients are optimal. Have you had your vit D, vit B12, folate and ferritin tested? They all need to be optimal for your body to be able to use thyroid hormone. Especially when you have Hashi's.
Your ME is probably just under-treated hypo. Most people's is.
Nutrients just being 'in the normal range' is not the same as being optimal. I suggest you post your results here and let's have a look - maybe be best on a new post.
The GP probably doesn't have any info to give you. They know next to nothing about thyroid. Which is why forums like this exist. You can ask anything you like, on here.
But with Hashimoto's you may need a TSH lower than that anyway. Many need TSH around one and FT4 towards top of range and FT3 at least half way in range
Essential to regularly test vitamin D, folate, ferritin and B12
Obviously essential to have good B12 and folate for baby's development
Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased
Thanks so much for response. Not ceoliac as been tested for that but still have IBS symptoms. I also have ME after suffering a brain injury a number of years ago so sometimes difficult to determine what's causing symptoms!
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