Stuck in a vicious cycle of hypothyroidism/adre... - Thyroid UK

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Stuck in a vicious cycle of hypothyroidism/adrenaline/low ferritin

owl87 profile image
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Can anyone offer any advice for someone stuck in a vicious cycle of hypothyroidism/ adrenaline and low ferritin?

For over a year I’ve had low ferritin (under 20 range 15-250) and under medication but struggle to raise either. My ferritin will not budge - I’ve tried everything ferrous fumurate, spatone, sublinguals/sprays and eating lots of liver and it won’t move. The only time it’s increased is when I had optimal ft3 levels for a short time in 2020 and it shot up to optimal so I assume it won’t budge until my t3 goes up!

My thyroid levels are always around 65-70% or range ft4 and 43-49% ft3. I currently take 87.5mcg t4 and 7mcg t3 but I have huge trouble raising my dose - I tried a 2.5mcg increase a couple of days ago but had headache, nausea, severe tiredness and general feeling awful after only the first half of it so only took half that. I’m on 3nd day of 1mcg increase and last night I had bad anxiety despite being severely tired while trying to sleep then this morning I again feel bad with faster than normal thumping heart, anxiety, headache and severe tiredness which started around 2 hours post dose. Basically whenever I try to increase I feel overwhelmed with adrenaline symptoms.

My main remaining hypo symptoms are severe digestive issues including reflux and constipation (which I imagine is source of iron absorption issues and probably isn’t helping thyroid metabolism) and adrenaline issues -for example I have times where I wake in the morning and have a gradual adrenaline increase which builds into anxiety with fast heart rate and nausea. I haven’t had a saliva cortisol for a year but I had a 9am cortisol blood test a couple of weeks ago which was 515.

I feel completely stuck in a rut I just can’t escape and it’s beginning to feel like I will never get better - does anyone have any ideas? Thanks!

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humanbean profile image
humanbean

I’ve tried everything ferrous fumurate, spatone, sublinguals/sprays and eating lots of liver and it won’t move.

One of the things that people need to know about iron supplements is how much iron there is in the product they take.

For example, I took ferrous fumarate 210mg, one tablet, three times a day when I was supplementing to raise my iron and ferritin levels.

Each tablet contained 69mg of pure iron, meaning that I was taking 207mg of iron per day.

Compare that to spatone... Each sachet of spatone contains 5mg of pure iron. I would guess that sublinguals and sprays would be similar or possibly very slightly higher.

The other thing about iron, is that it can take a very, very long time to raise levels of ferritin and iron. It took me 21 months to raise my ferritin (which was in range but very low in range) up to mid-range taking the ferrous fumarate 210mg three times a day. Once I'd got it there I had to find my maintenance dose, and that took me a long time. I ended up taking one tablet four or five days a week just to keep my ferritin where I wanted it.

I know some people can raise their iron and ferritin with liver but I was never one of them. I like it - perhaps once a month - but couldn't eat enough to make much headway in terms of raising my iron levels.

Since you struggle so much to raise your iron/ferritin you might want to ask your doctor if you can be referred for an iron infusion. Alternatively, you could pay for it to be done privately - but I do know its expensive. With hindsight I wish I had had an iron infusion rather than taking iron pills for so long. I don't know where you can get such a thing done privately.

owl87 profile image
owl87 in reply to humanbean

Thank you for the response! Yes I struggle to take big doses of ferrous fumurate because it worsens my already bad digestive issues. I have considered iron infusion but have no idea how I’d do it privately or pay for it because my doctors will not do it - according to them a ferritin of 10 is acceptable!!

humanbean profile image
humanbean in reply to owl87

If you look at this link from NICE you can see your doctors are out of date :

cks.nice.org.uk/topics/anae...

under "interpreting ferritin levels" it says :

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Regarding your problems with tolerating iron pills :

I can tolerate iron pills - but only with food. Obviously it slows down/reduces absorption of the iron, but when people are very low in iron they should use any method they can to get some iron into them. That's what I did, and although raising my level was extremely slow it worked in the end.

I buy my own ferrous fumarate 210mg from pharmacies in the UK without a prescription, and I pay for my own finger-prick testing too. Doctors were quite happy to leave me iron deficient so I don't rely on them any more.

There are other iron supplements that doctors can prescribe but which can be bought without prescription - e.g. ferrous sulfate and ferrous gluconate.

Ferrous gluconate is about half the strength of fumarate and sulfate, so might be worth your while to try them to see if you can tolerate them.

I wrote a reply about iron supplements to a member who was trying to conceive. Ignore the stuff about conceiving but read the rest :

healthunlocked.com/thyroidu...

owl87 profile image
owl87 in reply to humanbean

Thank you again I will have a read!

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