This is my first post and looking for some advice from the forum please.
I'm a 48 year old male, diagnosed with hypothyroidism approx 2 years ago, my symptoms were typical hypo, and I had probably had it a while before diagnosis.
After I started taking levothyroxine, approx 3 months I got muscle / joint pain particularly in lower back/thighs/knees, not sure if this is Hypo, a result of the Levo or just coincidence. After a battery of tests for arthritis, lupus, AS they couldn't really find anything wrong other than wear and tear and now talk about fibromyalgia which doesn't feel right. (I guess my GP seems to think my Hypo is under control)
It took over a year to get the blood tests back in range the first time whilst slowly increasing the Levo. My hypo symptoms have improved a little but the fatigue kicks in by mid afternoon I'm normally craving sugar which I assume I need to keep going. (Does anyone else get this ?) However fatigue and the joint/muscle pain are really my major problems. My GP agreed to retest back in Aug '19 but will only do TSH, T4, and found that my bloods were out of range again and increased my levo, this has happened twice now. I currently take 150 ug levothyroxine which until 2 wks ago was always Teva but I just swapped to North-Star as I read a post of possible issues with Teva.
I decided to have some private blood tests done and my bloods have changed once again since November, my results are
TSH: (Range 0.3 - 4.2 mlU/L) Before Levo 04/2018 @ 10.1 (so not a massive issue I know), 11/2019 with 150 ug of levo @ 1.5 and at same dosage of levo 02/2020 @ 6.26.
T4: (Range 12 - 22 pmol/L) Before Levo 04/2018 @ 13 (again not a massive issue), 11/2019 with 150 ug of levo @ 19.0 and at same dosage of levo 02/2020 @ 13.1. I'm back where I started 2 years ago !
T3: (Range 3.1 - 6.8 pmol/L) Never tested before 02/2020 @ 3.44
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Can be more convenient and more effective taken at bedtime....minimum of 2 hours away from eating
Some symptoms are due to now being under medicated and in need of 25mcg dose increase in levothyroxine
See GP with these results and get dose increase to 175mcg per day (avoiding Teva brand of levothyroxine unless lactose intolerant. Teva is Only brand that makes 75mcg tablet)
Also vitamin D is now deficient and you really need LOADING dose prescribed by GP
That’s 300,000iu over 6-8 weeks. Works out at 5000iu per day for 8 weeks or 7000iu per day for 5 weeks
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist 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 first or buy test online for under £20, just to rule it out first
All hashimoto’s patients should be tested for coeliac
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, 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
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Firstly thanks so much for the quick reply and all of the information, I have a weekend of reading ahead !
I was taking Teva only until I changed to North Star about 2 weeks ago, my pharmacist (Tesco) was really helpful about trying other brands once I asked. I always take Levo first thing in the morning with water and leave it ~1 hr before food or any other drink other than water. I also take vitamin supplements (Vit D, Magnesium, VitC & Zinc) in the evening to avoid conflict.
My results are
Folate (Range > 3.89) @ 6.34 ug/L
Ferritin (Range 30- 400) @ 126 ug/L
B12 (Range >37.5) @ 72.4 pmol/L
I will talk with GP about an increase but this is the 3rd time over 12 months so my TSH / T4 are not stable. Im assuming that Hashi is continuing to attack my thyroid so my own T4 decreases.
I was tested for coeliac which was negative but I had read about gluten sensitivity so was going to try going gluten free for a time. The leaky guy is also interesting as I was diagnosed with IBS several years ago.
With hashimoto’s The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
When I first joined this group there was such a lot to take in but I found the Thyroid Uk site and read it through both morning and evening until it all became common knowledge. There are the does and don’t’s in there as well. Again a lot to get your head around but it works well. Another useful thing are the sheets of info, good to print off if you need to show your GP and if he tries to give you a lecture then you can point out the HealthUnlocked Thyroid group is recommended by NHS Choices. I take my basal temperature daily as I find that’s a good indicator for me that my meds are at a good level and it’s good to be able to ask fellow sufferers and know we are not alone. So glad you found us!
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