Thyroid?

[grumiosmum]

I had Graves disease 30+ years ago treated with a partial thyroidectomy which was a complete success.

Get my thyroid levels checked with a blood test every year, always comes back 'normal' according to receptionist when I phone in for the results. However, at a recent checkup the nurse showed me the results over the years and although it's still within the normal range, the reading has declined every year and is now 1/4 of what it was 10 years ago, iyswim.

In my mid-50s now, put on weight easily, feel a bit sluggish sometimes but think this could also be due to age/insomnia/menopause (although am on HRT).

Wondering whether to ask Dr if I could take thyroxin as a bit of a boost, even though the tests still seem to show I'm in the 'normal' range?

Welcome any advice from anyone with experience of this. Thanks.

I think the normal range is too inflexible - I take thyroxine and although my levels are always at the high end of the "normal" range - I still "suffer" from weight gain, lethargy, hair loss, aches and pains.

No harm in bringing it up - my MIL takes 25mg of thyroxine (tiny amount) so a little can help. As long as they continually check over a few months and you start to feel symptoms of overactive thyroid.

That's interesting. I had a partial thyroidectomy a few years ago & all tests so far normal but wonder if the level is dropping anyway. I'm a similar age & put a lot down to peri menopause but will bear thyroxine levels in mind now. Certainly won't hurt to ask GP & hopefully they'll be able to help.

Have been googling and seen that hair loss can be a symptom - mine was coming out a lot in the shower quite recently, wonder if that could be related.

I guess it's worth asking the GP.

The trouble is that so many of the symptoms could be confused with menopause! I still have a fairly demanding job & need to be on top form mentally, which I don't always feel ...

What was your last result?

You're definitely not being unreasonable asking to try some thyroxine, but it would be useful to see the numbers . They worry It may dampen your own thyroid leading eventually to full reliance on it, but it's very variable due different people and you need to feel well to enjoy life.

Technically they should also take symptoms into account too.

Last result, a year ago, was just over 1 I think. 10 years ago it was over 4. I'm not familiar with the tests & results (no-ones explained it to me) so not sure what that all means.

Interesting about a supplement dampening down my own levels. Hmmm.

I've recently been diagnosed with under active, and my blood tests showed that whilst my reading was low, it was still just normal. My doc said they had another reading, one that showed how hard my brain had to work to get that thyroid reading, and it was four times higher than it should have been. Basically, that was on the point of collapse and then my thyroid would go pop. Putting me on thyroxine would force that system to shut down, and my thyroid would then be permanently shut down, but she said it would be inevitable so we might as well do it in a controlled way. I wonder if you're in a similar position?

Interesting about a supplement dampening down my own levels. Hmmm

Well, I'd see what a Gp or Endocrinologist thinks. I remember one Gp saying this except that actually I don't think my own thyroid was making any at that point and the general given for full hypothyroidism now is that being as low as 0.3 or 0.2 is fine if the patient feels ok.

I don't think you fully understand tsh though? Forgive me if you do but 1 is actually ok; I'd consider 25 mg if your tsh was 4 actually.

Thyroids can grow to accommodate a partial thyroidectomy but you do need monitoring over time as it can change.

If I'm honest, you'd need to show clear symptoms (eg constipation) plus low t4 for an endocrinologist to consider suggesting perhaps 12.5 daily if tsh is 1. I doubt a Gp would.

Hair loss can also be vit d, b12 and low ferritin (over 70 is technically normal).

Sounds like you are possibly sub clinical dandy? good they are treating you.

I know a friend who recently had a partial thyroidectomy didn't take thyroxine to encourage her thyroid to 'grow' which it did eventually.

However you're right to be aware at this age / stage esp with hrt etc. Oestrogen can affect levels (I know hormonal contraceptives do) and menopause can cause changes.

Tackytriceratops Thank you, as I said in my OP I know that 1 is in the normal range. However, given that 10 years ago it was 4, and has fallen a bit every year, I am just wondering whether the steady decline could be having a physical affect on me, albeit it doesn't meet the medical criteria for hypothyroidism.

Other symptoms I have are hair loss, cold hands & feet & increased anxiety. I eat a very healthy diet & get lots of fresh air & exercise, so vitamin deficiency is unlikely.

Interesting about HRT possible impact, didn't know that, think I will ask GP for a referral to an endocrinologist (have insurance).

Have just re-read your post, and think you are saying that 4 is worse than 1?

Don't actually know if what they have measured is TSH. Definitely need to speak to GP.

Thyroids can grow to accommodate a partial thyroidectomy but you do need monitoring over time as it can change.

Exactly - this is why I have had blood tests every year. But never actually discussed the results with a GP before, just phone the surgery & the receptionist says "It came back normal".

Always ask the TSH result. 0.5 to 4.5 is ‘normal’ according to guidelines. In my case, if mine is more than 2 I feel terrible. It’s currently 1 and I am okayish. I take 125mg a day.

This is a bit of a thyroid 101, hope I'm not repeating anything you already know!

Ok so tsh is thyroid stimulating hormone. So if there's a lot in your blood it means your pituitary gland has detected you don't have enough t4/ t3 so is pumping out tsh to stimulate the thyroid to make more.

Around tsh 0.3-1 is a good result. I feel awful as a pp said any higher than 1.5. At tsh 4 I really can't cope. Usually between 4.5 and 10 is considered sub clinical (further investigations needed) over 10 is full blown hypothyroidism. So a declining tsh is good over the years as it's recovered.

They tend to measure t4 if tsh is over or near 4 (it's lab dependent - gps can make specific requests for t4, t3 and antibodies.) from rough memory it's around 12-22, as this might show you don't have enough t4.

T4 is actually a prohormone. T3 is what is actively used and is made by both the thyroid it's self and converted in various parts of the body from the t4. So if you have no thyroid you just take t4 and your body should use it to make the t3 you need. A few people are deficient in the enzymes that convert it and need t3 but have to take it 2-3 times a day as it has a short half life. T4 lasts about a week to 10 days.

So currently your thyroid will be making some t3 as well as t4, hence why some gps would prefer not to give thyroxine as it would tell your pituitary to stop stimulating the gland with tsh. A healthy thyroid gland / system needs iodine, selenium and iron to be fully functional. Less iodine is needed if you're fully reliant on thyroxine, but still needs some.

Also, there can be a bit of a time delay in symptoms with thyroid things, but usually only 6-12 weeks.

Thanks for the explanation Tacky.

Sorry, t4 is thyroxine

Tacky, thank you so much for this! You've just managed to help me understand something I've been bamboozled by for three months.

My t4 reading was 12 so that's why I was put on meds immediately.

Glad it was helpful Dand! I've had it for over 20 years and many of those were spent not being fully medicated or understanding it.

With thyroid conditions, especially hypo and on thyroxine, it's worth understanding how the medications and blood tests work. Some gps are more aware than others of the varying need between patients to either get tsh very suppressed - mine is currently 0.2 and I'm very well, and an endocrinologist I once saw when I wasn't well said this was ok - whereas other people are fine at tsh 1. They might have a tiny bit of normal thyroid function or their body just managed well at that level. Other gps aren't - I ran into lots of issues where a Gp just read the lab's opinion that it was ok, for eg tsh 1.75 or 2 - lab would say is fine but i would be having symptoms that the Gp wouldn't know about. Increasingly though I'm finding gps check to see how you feel.

At the same time some other things can cause similar symptoms eg low vit d, low ferritin and b12 so it's worth asking a Gp to look at the bigger picture.

There are a number of medications that can interfere with either absorption of thyroxine or how the body processes it too. Always double check anything you take.

I'm a member of the British thyroid foundation and was told several years ago by them via an endocrinologist who was their medical advisor to always record results and notice general health including muscle strength in order to work out your own best level. Medication can be tweaked to an extra or less 25 every other day too.

www.btf-thyroid.org/

If you join you get a quarterly mag and can ask their medical advisors questions.

This is a really useful book to have too:

www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191

Thank you! I'll be using both of those resources, thank you.

Interestingly when I went to the doctor about feeling exhausted etc, we kind of expected vitamin b12, but instead what was found was the low thyroid level and an extremely low folic acid result, so I've been on both of those for three months. Currently waiting on my first blood test results to see what difference has been made by that, so should hear back this afternoon.

That's really great your Gp tested those levels too. I hope you feel better soon.

Low thyroid can knock ferritin / iron as it affects something to do with how it's all metabolised in the bone marrow (I read in a btf magazine). Just something else to watch.

It's all intertwangled, isn't it? I'm also on medication for epilepsy, asthma, migraines and digestive problems, so everything I take needs to be happy with everything else, and it's a right old pain in the bum. I basically avoid anything except prescriptions. Even something as simple as a decongestant is a no-no for me - I only ever go to my own pharmacy for over the counter medications now, just in case. It's all rather tedious.

ps I've ordered the book, thank you