My sister and I seem to follow the same patterns heathwise, so we compare notes unfortunately she’s in Devon and I’m in the North East.
We are both hypothyroid and she takes 175 thyroxine per day and I 150. It seems to be more or less right.
BUT we both have been having joint flare ups and some are incredibly painful. My shoulder is unbearable and it’s knees and shoulders particularly. She had a ‘virtual’ appointment yesterday and called me to say that the dr thinks it’s palindromic rheumatism? Is it possible that we both have that? Oh forgot to mention I keep showing high inflammatory markers in my blood which no one seems to be able to understand and sis is worried because there seem to be some strange results from her liver so they are saying that they don’t want to treat the palindromic rheumatism.
Sorry for this long post but it’s a minefield.
Thanks 😊
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Did you manage to test vitamins and minerals - suggested in your first post. Perhaps VitD is low - which is more than a vitamin as it is anti- inflammatory and a steroidal pro-hormone ...
Also B12 - Folate and Ferritin need to be optimal as they aid conversion of T4 into the ACTIVE hormone T3.
Do you have any results to share ? Under medication can be linked to joint pain. Liver enzymes can be raised with Thyroid issues - due to a lowered metabolism.
Presumably you and your sister have autoimmune thyroid disease, also called Hashimoto’s diagnosed by high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to 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
While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet
Assuming test is negative you can immediately go on strictly gluten free diet
If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
I have joint flareups...& knee pain but I have had repairs on both knees for meniscus tears...the pain hasn't really gone& now surgeon says it's 'probably' arthritis in the joints!
I was on 150 mcg of Thyroxine but I was waking in the night with my heart fluttering so I cut it to 125mcg & a blood test showed TSH way out of range (GP doesn't bother..I have access online)...so I have cut the Thyroxine to 100 mcg...& the GP practice says for me to have a repeat blood test when coronovirus over(?!).
I know this doesn't answer your query...however I wanted to say I was OK on 150mcg for yonks...I was only over medicating when I started to take it in the middle of the night on an empty stomach!! So do keep your eye on when you medicate.
Thanks Pollyanna I was on less and I have been taking my thyroxine at night for ages I have been trying to convince my sister.
I don’t have palpitations or anything and I tend towards low blood pressure, I’m currently trying to to increase my water intake for that. I don’t know it just seems very weird that my sister and I have exactly the same symptoms don’t you think?
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I was on less and I have been taking my thyroxine at night for ages I have been trying to convince my sister.
Cover ups by NHS
Joint acke
Levothyroxine Questions
Only TSH
