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(20 Posts)
beautybumble Thu 09-Nov-23 15:28:16

Hi. I took Levothyroxine for years but never felt there was any improvement. I had regular blood tests and looked after myself well with exercise and a good diet. Have any of you with this condition used anything else apart from Levo? If so did it help? I'm 73 and trying hard to stay fit and healthy, but really need to get advice from anyone who has experience of other meds. Thank you.

Gin Thu 09-Nov-23 15:38:06

I have been taking it for many, many years and my levels remain normal. I have no side effects.

Fleurpepper Thu 09-Nov-23 16:07:39

Same here Gin. I walk a lot, garden, swim, stay very active.

supergirlsnan Thu 09-Nov-23 16:15:47

I've been on Levothyroxine for 12 years. Used to have regular blood tests (pre-covid), not had one for a while. Think you've jogged my memory OP and i'll ask for a review. Never felt any different since taking them. I did, initially, hope they may help with some weight loss. Sadly, they haven't!

Grannynannywanny Thu 09-Nov-23 16:31:10

beautybumble if blood tests have confirmed you have an under active thyroid then levothyroxine is the correct treatment. It’s a synthetic form of the thyroid hormone which is lacking in those of us who have hypothyroidism. A daily dose of this synthetic thyroid hormone is the only way to treat the condition.

Possibly it may be available under different trade names but it will still be the same drug. Your GP should do an annual blood test to check you are receiving the correct dose.

annsixty Thu 09-Nov-23 16:32:48

My GD was diagnosed with Hyperthyroidism just a few weeks ago.
She is 21 and had been fobbed off by GP’s for a long time being put on “the pill”, antidepressants and not having her symptoms taken seriously.
When the penny dropped eventually her GP apologised and started Thyroxine immediately, I think she will have regular checks but what should be looking for herself as to side effects.?
She is very overweight and I did hope like a previous poster this will start to go down.

NanKate Thu 09-Nov-23 16:33:13

Beauty I could say exactly the same. About3 years ago a doctor reduced my thyroxine from 150 mcg per day to 100 mcg a day as he said I was on too much. I could hardly function. After seeing a more helpful doctor he sent me to an Endocrinologist to get to the bottom of why I was not benefitting like others from the tablets. I have had every test known to man and nothing has shown why I am so lethargic, other than the tabs not working for me.

There is another tablet I could have from a private endocrinologist but the NHS won’t agree to supplying it. It is supposed to be dangerous 😳 I am seeing a new Endo consultant in January but don’t hold out much hope.

I have about 7 hours of feeling normal each morning and the rest of the time I could easily sit and dose. I’m 77 now so think this is my lot in life. If I want to go out in the afternoon I have to sleep in the late morning. If I go out at night I have to sleep twice in the day.

Sorry not to be more helpful but I just wanted you to know you are not alone.

Grannynannywanny Thu 09-Nov-23 16:52:08

annsixty side effects aren’t common with levothyroxine as it’s replacing the deficit in the natural thyroid hormone and hopefully bring it up to a normal level. If the dose was too high it could result in an abnormal increase in metabolism which could cause anxiety, diarrhoea, insomnia, palpitations etc. Basically all the symptoms that result from an over active thyroid when the body has too much thyroid hormone. Your GD’s GP is likely to do regular blood tests in the first year to check that the dosage is correct .

pinkquartz Thu 09-Nov-23 16:54:52

I spent over 10 years on Natural Thyroid and I did much better on that.
But the Govt. in its 'we know best arrogance' won't allow it any more and I was put back on Thyroxine. I don't feel much benefit from this medication but the GP says my blood tests do not show a deficiency so no change.

There are doctors that believe the lack of improvement is due to the body being unable to use the medication in the form of Thyroxine.

Does anyone know about this? Has anyone been able to get hold of Natural Thyroid. It is not dangerous for me and it wasn't for my Dad whi was put on it back in the early 60's or late 50's.
Before the blood tests had arrived.

TerriBull Thu 09-Nov-23 17:00:54

Another here on 150cg. I've never found Thyroxine a silver bullet, I've probably been on it for getting on for 25 years now. Before I was diagnosed all those years ago, I had days when I feel I was wading through cement, the only way I can describe it. I have varying days now, sometimes I feel fine others really sluggish, I can't always pinpoint what precipitates that. Exercise can help, usually I try to swim 3 times a week, but am inactive at the moment due to a broken arm.

In America some people who have hypothyroidism have the condition treated, with "Armour" derived from pigs, rather than the synthetic form we take here. I read that is more succesful in treating the ongoing lethargy many sufferers experience but it's much more expensive and not available here, or wasn't when I read about it last. Interestingly when Hilary Clinton was running for president and made her medical records public, that was what she was taking.

I wish you luck with your appointment Nan Kent.

Grandmadinosaur Thu 09-Nov-23 17:12:33

I’ve been on thyroxine for 32 years. Started off on 50mcg. About 4 years ago after having similiar symptoms as you NanKate I was upped to 100. Last year I suffered a great deal with breathlessness and I was downed to 75 which improved those symptoms. However for the last 3 months I’ve felt dreadful with fatigue etc. I’m so sick of having to pace myself if wanting to have a normal life I’m only 66 and life shouldn’t be like this. I passionately feel it is a condition that gets overlooked.

NanKate Thu 09-Nov-23 20:26:37

I so agree with you grandmadinosaur. I’m fed up of telling people I have fatigue. One friend said ‘we all feel tired at our age’. I wanted to say I have felt like this for 20 bloody years !!

I try to say to myself that it is better than having cancer, Parkinson’s or some other debilitating illness.

Oldbat1 Thu 09-Nov-23 20:44:41

Ive been on thyroxine for 20years. Dose is 125mg a day. I dont think i have any side effects. I rang practice nurse this morning as im due blood test and the first available appointent isnt until 29th December!!!

NanKate Thu 09-Nov-23 21:18:01

No side effects they just don’t work for me and a few others on GN. 🙁

coco12 Thu 09-Nov-23 23:17:05

Been on thyroxine for about 30 years, a few tweaks now and then. The natural dessicated one is not available to many although some seem to get it. I'm ok really, got access to my notes which is helpful to see where I am in the range.
I think it's arriving at a place that's ok within your allowed range of TS4 and you feeling ok at that range. My GP's do listen to how I'm feeling which is good.

Sparklefizz Fri 10-Nov-23 09:34:39

I've been taking Thyroxine for 23 years and have had several ups and downs with it. I also have ME/CFS and various other conditions so it's impossible to know which condition is causing my extreme fatigue.

Some people need T3 as well as T4 but that's not believed in the UK so is unavailable. For some their bodies don't convert T3. The thyroid gland is much more complicated that the NHS seem to accept.

Once upon a time a full thyroid panel would be done as part of the regular blood tests, but over the past 10 years or so they will only test the TSH even when I have stipulated I want the full panel. Twice I have paid for private blood tests via Blue Horizon Lab to keep an eye on the Free T3 and Free T4.

I had to see a private doctor to get any sort of diagnosis in the first place as the range for Free T4 in the UK is wide, and no one knows where they were on that scale when they were well. The private doctor said she could prescribe Thyroxine and sent a letter to my GP. Fortunately my usual GP was on maternity leave, having refused to prescribe for over 2 years. The locum in her place was quite happy to prescribe Thyroxine because my bloods showed I was right at the bottom of the range. Sadly I had to become really ill and weak - too weak to even pull open the doctor's door - it was terrifying, and I should not have had to reach such a dire stage before a doctor listened to me.

Unfortunately Thyroxine has not been a miracle treatment for me. I'd like to lose a stone but it's been impossible despite eating very healthily due to multiple food intolerances and allergies.

At one time I had a new doctor who kept increasing my Thyroxine dose until I was taking 200 mcg daily and suddenly my thyroid became hyper instead of hypo, and I suffered Atrial Fibrillation and collapsed. I thought I was having a heart attack. A different doctor said I could have had a stroke as my heart was jumping about all over the place and could have released a clot. I had to take Beta Blockers for 3 months to get my heart rate under control and I felt more ill than normal for a year afterwards.

Now I take 75 mcg and frankly the symptoms of being on too high a dose were terrifying and I never want to go through that again.

Susan56 Fri 10-Nov-23 18:12:45

I have been on thyroxine for 34 years, for 30 years on 125.Last Christmas a nurse in his wisdom reduced my dose to 100.I have felt dreadful as others have said very tired also suffered some hair loss which I am finding very distressing.I had a blood test about four weeks ago and am now on 150 as my levels were far too low.The blood tests also showed I had been mis prescribed another drug so maybe my symptoms are in part due to that.I find I am fine in the morning but by mid afternoon feel exhausted.More blood tests in four weeks so will see what they show.

Grannmarie Fri 17-Nov-23 11:09:58

Hello again!
My recent blood tests are fine, so I can't blame the thyroid condition for my fatigue. The practice nurse gave me the Epworth Sleepiness questionnaire, so sleep apnoea could be a possibility cos my score is quite high. GP telephone consultation to follow.....
Maybe I was a squirrel in a previous existence, I just want to hibernate for the winter.

Grantanow Fri 17-Nov-23 14:01:26

OH has been on the minimum dose for years with no problems.

Opal Fri 17-Nov-23 14:32:01

Please read "Stop the Thyroid Madness" by Janie Bowthorpe. It's a real eye opener.

Blood results may be within "normal" NHS ranges, but many doctors question the validity of the ranges. A TSH is not a true indicator of what's really going on with your thyroid, you need T3 and T4 blood tests - which the NHS does not offer as a matter of course.

There is a lot of literature on this - my own conclusion a few years ago is there are many of us who are borderline hypothyroid who are simply missed by the NHS because of invalid blood tests and medications other than thyroxine not being available on the NHS, and not in line with NHS guidance, so GPs won't prescribe it.

Please do your own research though, don't take my word for it.