Share with me your experience of underactive thyroid, and the medication please.

[YepItsAnotherOne]

Morning all. Would love to hear of people’s experiences with under active thyroid and the medication that is prescribed.

I went to the doc recently as found a lump in armpit, have a breast clinic referral and waiting on an appointment.

I had bloods as part of this and I received a call from the clinic at 8pm last night. It was another doctor in the clinic who had been looking at results that came in. Said while I wasn’t his patient, he needed to contact me asap and tell me I have underactive thyroid and I need to get on medication today. He sounded really concerned 😳 I was a bit blindsided by the call so didn’t ask for specific levels unfortunately.

Ivebeen looking up the signs and symptoms and have a number of them. Things are clicking into place in my mind but I’m also trying to be conscious not to attribute everything I’ve experienced over the last few years to this diagnosis, as that is probably not helpful.

Would love to hear other people’s experiences of low thyroid, what were the symptoms, why were you tested and how did you find taking the medication afterwards.

Thanks in advance all 😊

It is your personal medical information so you shouldn't need a SAR for this.

What does it actually do?

Liothyronine?

When your thyroid is functioning perfectly, it produces a little T3, but mostly T4. T4 requires your body to covert it into T3, which is the active component of thyroid hormones.

Levothyroxine is synthetic T4 and, as such, requires your body to convert it in the same way it would if you were producing it (or enough of it) naturally. Liothyronine is synthetic T3, which doesn't require conversion.

Some people, for some reason, seem to struggle to convert the T4 into enough active T3, so can end up not feeling optimal. If you add liothyronine you are giving your body T3 without having to rely on it converting.

Youre the only person Ive ever come across on the same dose as me 😊

It was initially raised to 125mcg but it made me jittery. I then started taking 25mcg on top of 100mcg every other day. Hallelujah when they introduced a 12.5mcg tablet. Fine tuning is everything.

I hope you are feeling well.

Oh I. Do alternate 25s, I must ask the pharmacist, would make things much easier. Every 7 or 8 p years mine goes a bit wonky and they tweak it for a few months till I end up back on the same dose, really weird but its happened 3 or 4 times. RIT induced hypothyroid 30 years ago.

I will come back later but this charity is a good place to start. If you join you can send letters/ call helpline. I’ve found it invaluable for years. GPS aren’t always that clued up, and definitely weren’t during pregnancy

This page is useful. https://www.btf-thyroid.org/diets-and-supplements-for-thyroid-disorders

specifically the bit on B7

Routine is key - taking it correctly and at the same time of day, getting blood tests done at same time of day etc.

it takes a while to build up - about 6 weeks, but then they often leave you for longer as some symptoms may not completely go for longer.

aim for tsh around 1 as a starting point.

You can do tiny adjustments as pp have said. I take two extra 25s a week, 125 rest of time.

mine has been a nightmare to get right since I had kids and also perimenopause. And also when on hrt. And then coming off it and going on tamoxifen.

im a human yo-yo

always needed loads more in pregnancy. When I was on testosterone with hrt I only needed 100. Came off all then when I had breast cancer and slowly climbed back to to what I’m on now. Tamoxifen made me up it again.

i also seem to need more when I’ve more muscle mass. Or maybe it’s when I’m training? I’m working out a lot to build muscle mass. That nudged me into the two extra

I do have some osteopenia in my lumbar spine which unfortunately might be due to too much thyroxine in the past and not maintaining strength.

i generally feel so much better being stronger (and on the right dose) - I’ve always noticed this with hypothyroidism. But do have to eat enough protein too - I didn’t make any progress till I did. (And creatine)

had it for 30 years

The dose changes are why I’m sooooo careful to take it very consistently- so I know it’s not to do with how I’m taking it

I am on eltroxin 125mg, thybon or T3 and naltroxin, I have no symptoms but when I was in eltroxin only hair falling out, freezing weight gain dry skin, u will need to get your bloods tested especially T3, and the find a doctor who will prescribe medication like thybon there is a Facebook page with loads of information on it, best of luck

My levels were low after having my firt child. 4 years later the Dr started me on Levothyroxine. I think I started on 50mg that went up to 75mg now, 28 years later I'm on 100mg. The main symptoms for me were tiredness & my hair was falling out lots. I had itchy skin on my legs only. Your Dr will start you on a lose dose & monitor you over a few months changing the dose to suit what your bloods show. Hopefully once you get to a level that's right for you, you'll see an improvement in your health & symptoms.

Havent read the full thread - register on Health Unlocked and read up information provided by people that actually understand this unlike a lot of GPs. 25 mcg starting dose is a bit rubbish - if you are under 60 then it should be a calculation based on age, weight and medical history not a flat 25. Also, a lot of GPs don't realise that it isn't a top up but a replacement so that level isn't suitable for anyone

Posts by seaside Susie are especially good, she sadly passed a year or so ago.

I was diagnosed about five years ago. I went onto Levothyroxine and my dose was gradually increased to 125mg. But I felt awful on it - as though I was losing my mind, to the point where I didn't want to live. I felt much worse than before I went on it. (Apparently a small proportion of women dont't get on with it.) So after a few months I stopped taking it.
Now I take Ashwaghanda, which is a herb that women in India take for underactive thyroid ( Holland & Barrett sell it). I also use Ayervedic remedies, ie. walnut oil rubbed into my neck in the evening and coriander seed in hot water in the morning, and thyroid massage.
I don't feel great. I have good days and not so good days. But I don't know what else to do. My hope is to stimulate my thyroid to work better. I have blood tests every six months or so and sometimes they're good, sometimes not so good, but better than when I was first diagnosed.

I feel better if I avoid sugar, cakes etc. But I don't know what more I can do - the local GP surgery can't offer me anything apart from Levothyroxine. I could try a different brand but am loath to go back to feeling that bad again.

If anyone has any suggestions, I'd love to hear them!

Do you have your blood results (incl lab ranges) from diagnosis and/or when you were treated?
Find out what your actual levels are and if everything looks great maybe get a private t3 test. If you need t3 you can either adjust your levo or take t3, via NHS or privately.
Thyroid UK can help guide you, they’re very helpful.
Hypothyroidism can be fatal if untreated, although it probably never is nowadays. It can affect your cholesterol and heart and make you feel miserable.
Blood results can fluctuate regardless of what you do, I doubt walnut oil is having a significant impact either way. My TSH was 30+ and without treatment it went down to under 10 and this made it very awkward to be treated, so it dragged on for another year or so.

I was diagnosed 10 years ago. I was so very tired and brain-fogged that I knew something was seriously wrong but had no idea what. Tests showed elevated TSH and autoantibodies. Was started on 25 mcg Levo then up to 37.5 mcg but it did little for me at all. Couldn't be increased further as bizarrely my FT4 was still quite high. Of course I eventually found out that this meant I don't convert T4 to T3 very well. So adding more T4 in via Levo wasn't doing much.

Eventually after a LOT of reading around and advice from helpful forums I bought some liothyronine (T3) (couldn't get it prescribed) and immediately the brain fog lifted. Yes I still have other hypo symptoms like weak nails and fatigue, although not as bad as before. However my brain is so much better. Only thing is, I have to source this myself so I really hope I can continue doing so!

Really, if you convert T4 to T3 well, you should do OK on Levothyroxine. If you don't (it's genetic in some cases) then you'll have issues.

Also you need to keep an eye on your Vit D, Vit B12, folate and ferritin levels as hypo patients frequently have deficiencies. I later developed gluten/wheat intolerance so had to give those products up. Be aware if you have autoimmunity then you may go on to develop other autoimmune diseases, unfortunately.

You may need T3 (see my post above) - it's not easy to get it prescribed in the UK though. I have to buy mine. The best way to figure out if you need it is to do a blood test that included FT3 so you can see your levels. Best to get it via a company like Medichecks (others are available!) to be sure they do that test. Then visit a forum such as HealthUnlocked where they can interpret it for you.

Started on levothyroxine about a year ago on 25mcg. Now on 100 after several blood tests, increasing 25 each time. Due another test in three months to see if this dose is sufficient. Brain fog is bad but hard to decide whether that may also be linked to peri/menopause!

Experience today after the receptionist butted in why do you need to see a GP for a blood test form for this - then she read the pharmacist notes and said what are they on and booked me with GP partner next week (phone call) when I said ok tell me then when over the last 5 years I’ve had stable results, haven’t had levothyroxine dose altered.

You absolutely have to be your own health advocate.

Surely the receptionists are not gate keepers and have no medical training. I would have said I need to see a GP on an ongoing health issue as per their advice.