Hi, I am looking for some advice. I am 32 and I have a family history of thyroid disease and autoimmune problems and I recently had my levothyroxine taken away in Feb 2019 with a diagnosis of hypothyroidism in 2011 because my results were deemed otherwise ok although my TSH was 0.08 (0.2 - 4.2) and my FT4 was 22 (12 - 22) despite symptoms of hypothyroidism. I was taking 100mcg levothyroxine. So my symptoms are mostly brain fog, tiredness, headaches, salt cravings, cold feet, increased thirst, periods going heavy to light to early to late to short to long, hair loss, puffy and dark eyes, pale skin, rib pains, heart beating very slowly, yellowish tint to hands, nails splitting and breaking, cold hands, no appetite, joint pain, bone pain, back stiffness and pain and dry skin. Any advice appreciated!
Levothyroxine is for life in all but the rarest of circumstances
Who stopped your Levothyroxine and why?
Just testing TSH and FT4 is completely inadequate.
You need immediate FULL Thyroid and vitamin testing
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 Thyroid antibodies are raised
Low vitamin levels tend to cause low TSH and high FT4
Thyroid hormones need optimal vitamin levels to work well
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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?
See GP on Monday and politely insist on Thyroid testing including thyroid antibodies and all four vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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 are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Thank you! I have more recent results of TSH, FT4, FT3, antibodies, Vit D, B12, folate and ferritin through my endocrinologist though Vits and mins except vitamin D need rechecking as they are over 3 months old. I had my levothyroxine stopped by my GP since I was deemed over replaced even though my endocrinologist said my FT4 was on the high side. I just don't understand why my previous results looked over replaced and neither does my endocrinologist. My care has been shifting from my GP to my endocrinologist back and forth and I don't really know who's meant to be advising me anymore!
I forgot to add, my endocrinologist is considering sending me for a cortisol test and coeliac blood test profile because of my inability to gain weight despite eating better than I used to. I have noticed I have been craving salt, eyes been getting dark circles around them and I have been getting more thirsty during the day so I am worried I have possible adrenal insufficiency. I have a cortisol test in a couple of weeks.
When under the care of an endocrinologist, your GP SHOULD NOT INTERFERE
Contact your endocrinologist and explain your GP had stopped your Levothyroxine
How long have you been without any Levothyroxine?
Presumably you have had thyroid antibodies tested?
These are almost certainly high confirming cause of hypothyroidism is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and 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, sometimes 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
Insist GP does coeliac blood test on MONDAY
Or buy test online for under £20, just to rule it out first
If test comes back positive then you will have to remain on high gluten diet until endoscopy. Maximum 6 weeks wait
If negative you can immediately go strictly gluten free
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you for reply! At the time of the March results I was off levothyroxine for 5-6 weeks. The endocrinologist is fully aware of what has happened and cannot believe how I've been treated. I will post other results in my initial thread if need be? I have been struggling at work, unable to support my weight and stand up straight. Using a hot water bottle at my desk at work. Performance at work has been suffering a lot too. My endocrinologist has started me back on 100mcg levothyroxine, I have been taking this since Tuesday but I don't know when I'll feel completely well if at all.
The blood test I had done in February 2019 was done in the morning at about 9:20am, fasting and skipping levothyroxine for 24 hours, the one done in March 2019 was also in the morning at about 8:50am, fasting and not being on any levothyroxine for 6 weeks.
Since diagnosis I have had constant 6-8 week blood tests for thyroid because my levels are just not stabilising and symptoms are continuing. I'm getting tired of being used as a pin cushion.
Strictly gluten free diet and optimal vitamin levels should help
Levothyroxine high enough to bring TSH down under 2, often under one
Essential to test FT3, if this still remains low, after these steps, then like many Hashimoto's patients you may need addition of prescription of small dose of T3
I have March 2019 results for thyroid, only endocrinologist has seen them. GP has either not seen them or has seen them and decided to leave it to my endocrinologist to sort it all out. The results are most certainly not good.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
This is the problem when GP's are diagnosing on TSH. I have an extremely suppressed TSH (lower than yours), however my FT4 and FT3 are optimal and I feel well, however whenever my GP sees my tests, he concludes I'm hyper and wants me to reduce my medication. I have had to ignore his advice and continue on with my current doses. So annoying though. Paul Robinson wrote an interesting blog post just the other day which touches on this: recoveringwitht3.com/blog/c... . Hope you can get the help you need.
Hi, Thyroid issues and adrenal fatigue are the most common physiological symptom of mercury poisoning. Autoimmune diseases are also caused by mercury toxicity (most of the time). Have you ever looked into it? I can only encourage you to join this facebook group, it's a very supportive place, where you will find all the info: "Andy Cutler chelation safe mercury and heavy metals detox". Take care.
For many people, "The Numbers" mean nothing. ... "The Numbers" only tell you how much thyroid hormone is in the blood. They do not tell how much thyroid hormone is being taken up by the thyroid receptor sites and taken into the cells, where they have to reach to be effective.
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