I need to try to understand about my current situation
I have underactive thyroid for which I’m prescribed levothyroxine
But I have told my drs about feeling so wiped out so tired it hurts falling asleep during the day but not sleeping through the night
I have been diagnosed with atrial fibrillation,nafld,thyroid issues,I’m trans so take hormones as well
Recently I’m having pain and soreness one night getting up to pee I couldn’t put my left foot to the floor so painful , possible plantar fasciitis so I’ve bought insoles to help walking seem to help but also put my back into spasm ( I’ve seen specialists for two prolapsed discs ) so do have a weakness
Been a carer for mum for four years causing pain in my back due to lifting and personal care
Now I have referred pain in my joints everyday my feet ache my knees ache my arms ache I have tinnitus as well
I don’t see my dr until 24th July
I’ve been looking for help and support on lupus website / fibromyalgia website and now here
I need to understand what is going on as soon as I can
Some days I feel like I’m walking through thick mud I’m so tired a combination of constant care for mum as I have no support from relations who live five minutes away from mum
I also now need to see my mental health nurse regularly
Advised by her to spend more time at home , my flat and visit mum whereas mum expects me to stay often with her
If anyone has any advice I’d really appreciate it
Feeling overwhelmed right now
Thank you
Lee 😊
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Dogsareangels
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It may well be that you're under replaced with Levo or perhaps not a good converter of T4 to T3. Often fibro is linked to hypothyroidism due to not taking enough hormone.
The other thing that affects us is low stomach acid which means you cant absorb vitamins well from your food. Then we get symptoms from low vitamins and also our thyroid hormone doesnt work well.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
plantar fasciitis often low Ft3 and/or low vitamin D
Tinnitus often low B12
Is your hypothyroidism autoimmune
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What vitamin supplements are you taking
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Presumably you take hormones being trans
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Bit drunk post England match and i'm afraid have nothing constructive to say other than that i totally feel for you - caring for someone full time takes EVERYTHING out of you, I know having cared for my mother-in-law 24/7 who had dementia and was a force to be reckoned with, at the same time as being someone I loved to bits. And being trans and having to take additional hormones is a whole other layer of stress for you and your body to have to deal with both mentally and physically, which I cannot possibly even begin to comprehend.
I just want to send you so much luck and good wishes, which totally comes from my heart and soul. I have the same symptoms and sometimes feel full of despair, but would say to you right now, hold on in there, the 24th is only 10 days away and hopefully your doctor will have some helpful suggestions to aid you on your road to recovery.
You've got this Dogsareangels and your bravery and ability to be honest to yourself and your sexuality is what will give you the power to become well again. Hold on in there and GOOD LUCK! 😘
Has your mum considered getting a needs assessment from your local council? That would highlight where you mum needs support and any possible care needs and for example if any aids are needed they would provide them eg handrails around the house etc. Would your mum accept others coming in to help her?
Also from what you've described in your post you're an unpaid carer for your mum. There are organisations that can support you, Carers UK is one that I'm aware of. Also again your local council will have information also so it is worthwhile getting in contact with them for yourself.
Hello & welcome to the forum, I can’t add anything practical to the more expert advice offered. Just popping on to say you’re heard, thyroid is a challenging journey, and you have lots on top of that. Be kind and gentle with yourself, embrace & cultivate patience (a hard one for some of us) and look for support with your caring. You can’t care for others if not caring for yourself, depending on where you are there may be a wonderful carers support service you can tap into. Take good care! S
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