My ferritin was found to be low last year 22 (7-150) so I was taking liquid iron for 3 months and started to feel quite well again. I was retested and levels had increased to 43.1 (7-150) so I stopped supplementing. 3 months down the line and it has dipped again and is now 33.1 (7-150). Coincides with the old symptoms of feeling tired etc. Doctor said I can go back onto the liquid iron but should I be looking for the route cause or is this just what to be expected with Hashimoto's?
I am also currently on Thyroxine 125mcg but have today been told to reduce to 100mcg daily as my latest result is TSH out of range at 0.19 (0.55 – 4.78) and T4 is 18 (10-25).
It's a shame I had found a doctor who was going by more how I felt than the lab results but he retired. How do I convince new GP to leave my current dose alone??
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Syd35
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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
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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. 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
Suggest you persuade GP to stay on current dose while you improve your ferritin
Are you on strictly gluten free diet?
If not ask for coeliac blood test or buy online for under £20 before trying
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
Thanks SlowDragon been on this forum a couple of years so familiar with a lot of what you say. Still just one confusing puzzle to try and fit the pieces together!
A level of 43.1 (7 - 150) for ferritin is still not optimal for most people. To get a level which is mid-range you would need to get yours up to about 80.
Once you had got your ferritin to a level you were happy with you would need to find your maintenance dose. You might need to continue taking 2 or 3 or 4 or 5 doses a week of the liquid iron. There is no way to know without experimenting and testing what intake you need to maintain your level of ferritin where it maximises your feelings of wellness. Don't forget that it is also essential not to have excessive serum iron, so that needs to be tested occasionally too.
Personal anecdote : I got my ferritin levels up with ferrous fumarate 210mg, 1 tablet 3 times a day. I know a lot of people don't tolerate them, but I cope reasonably well. So I was taking 21 pills a week for nearly two years. It has taken a while to find out but my ferritin levels stay close to mid-range with me taking 1 tablet, 4 times a week. Obviously other people taking other types of supplement may need a different maintenance dose. I still test my iron and ferritin roughly every six months.
I have trouble keeping my ferritin levels up, so much so that I just completed 3 rounds of iron infusions. My levels are now high (expected) but uncertain as to how long it will last. I will be tested again in early April (~8 weeks) to see if the levels drop.
May I ask what liquid iron worked for you? How much did you take daily?
I had no issues with the infusions (I had three, administered 2 weeks apart, so 3 infusions in 6 weeks). The first two took 90 minutes (300 mg of iron sucrose in 0.9% Sodium Chloride) while the 3rd one took 150 minutes (400 mg of iron sucrose in 0.9% Sodium Chloride). The solution looked like Coca Cola!
The staff were very nice. Comfy chairs and TV to watch. 😊 I’m in the US so not sure if the process is the same in other countries.
I think they’ve really helped but the question ongoing is, will I need them on a regular basis in order to keep levels up. I have a slight MHTFR mutation which could be responsible. I need to look into it further.
Ah, so you were taking liquid ferrous fumarate. I believe I tried a pill form of that early on and my levels didn’t rise. I’ve seen some success with Ferrex 150 but too slow and not enough to ease the fatigue. So far, the infusion has yielded the best result.
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