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Hypothyroidism, advice please.

(43 Posts)
DaisyAnne Sat 22-Oct-22 10:42:49

Allsorts

Perhaps I’m being naive but I would have thought when put on such medication you were regularly monitored and assesssed for precisely what you are concerned about. It is important you contact the practise and get seen. Have your concerns and dosage discussed. Medication is supposed to make your life better not worse.
Do hope you get tge help you need.

You are/should be tested regularly in the first, possibly six months, Allsorts.

NanKate, I was like you and, although much better on the thyroxine, I continued to be lethargic and even suddenly fall asleep. I have had more tests for diabetes than I care to remember, but I can see why they did them. I was and am a long way down the score for that.

My doctor went back over all my notes and suggested we try something other than just treating the symptoms of my IBS, which by then I had had for 40 years! That's when I found the difference between not eating and eating the things you can't digest.

I am not suggesting this is your issue. I wonder, though, whether there is anything long-standing you "just" treat with medication? I didn't think IBS was anything to worry about. However, these things that your body copes with when you are young can do damage. It might just help if someone looked back on your notes.

The sooner your doctor finds out what is going on the less you will have to see them. Do go and have another chat with them.

biglouis Sat 22-Oct-22 09:39:32

I also have this and my GP insists on a blood test every year and alters my dosage accordingly.

NanKate Sat 22-Oct-22 09:38:30

Hello Elly another underactive thyroid person.

I’m pleased so many contributors here have benefited from Thyroxine, sadly I am not one of them. I have been on Levo for over 25 years.

At one time I was on 150mcg a day and was just about managing and then a doctor put me down to 100mcg and I could hardly function. In the end I was sent to an endocrinologist who I have now been seeing for 3 years+. He agreed to put me on 125mcg a day but is still keen to reduce it. He has given me so many tests to see why I am so lethargic and everything has come back normal (heart, no sleep apnea. Etc etc).

I am relatively normal in the morning and have what I would call 7 normal hours then I have to sleep, the afternoons I am much slower and could easily go to bed at 8.00 but I force myself to stay awake until 10.00 otherwise I would be awake in the early hours.

I too have put on weight and am losing my eyebrows.

He is running out of ideas for what he can do with me but I am grateful for his help. When I saw him recently I said I was taking responsibility for myself and asked him not to reduce my thyroxine again, and if I died early because of overdosing on Levo that was my decision. He agreed not to reduce the tablets but would see me again in 6 months.

If you can see an endocrinologist that would be good as I am one of the few patients he hasn’t been able to help.

Hope I haven’t depressed you, best of luck.

Chestnut Sat 22-Oct-22 09:29:25

I agree 50mcg is a low dose. I've been taking 125mcg for years and am checked every year. You should not be getting those symptoms.

SuzieHi Sat 22-Oct-22 09:18:10

Go back to the Dr. As others have said 50mcg is a low dose- you may need more. It can change- I’ve been on 75, 100 and 125 at times. Blood tested every 6 months.
Best to take your thyroxine first thing in the morning at least 30 mins before any food or drink. Milk and other dairy foods, coffee /tea with milk in are known to disrupt its effectiveness. Not everyone is aware of this- are you?

mokryna Sat 22-Oct-22 08:26:50

I have been on levothyrox for about 10 years but I have at least one yearly blood test plus a thyroid scan.
I started on a very low dose and now, one and a half tablets of 25. I have to watch my weight and exercise all the time or I do have problems.

Pittcity Sat 22-Oct-22 08:03:29

I was at the GP surgery every few weeks in my first year of diagnosis. It's not just your thyroid but you're whole body that has been affected. My UAT damaged my liver and kidneys.
Liver has recovered and kidneys stabilised after stopping taking all medications except for a first thing in the morning Levo.

Ask for a full MOT not just a thyroid check.

Calendargirl Sat 22-Oct-22 07:16:46

I started on 50 about 10 years ago, and am now on 75.

My UAT was picked up on my 60 well woman check, I had not had any noticeable symptoms up to them.

Hope you soon feel better.

Allsorts Sat 22-Oct-22 07:10:55

Perhaps I’m being naive but I would have thought when put on such medication you were regularly monitored and assesssed for precisely what you are concerned about. It is important you contact the practise and get seen. Have your concerns and dosage discussed. Medication is supposed to make your life better not worse.
Do hope you get tge help you need.

Rosepaul Sat 22-Oct-22 07:03:37

I too suffer from this, luckily my doctor is very good and helpful. I started on 50 but over the years has now increased to 100. When you contact your doctor or nurse please ask to have iron levels and vitamin d checked. I was also advised to take thyroid tablets in the morning and any other medication with supper as one can counteract the other. I hope you get some help with this but please try and see your g p, if you get the medication right it can make all the difference.

skunkhair63 Sat 22-Oct-22 06:18:25

Granmarderby10

You are a valuable patient Ellylanes1 and your symptoms require investigation?

Well said Granmarderby10!

skunkhair63 Sat 22-Oct-22 05:57:46

I was diagnosed with UAT 7 years ago, and also initially put on 50mcg of Levo. Whilst it helped with a few of my symptoms, I was still far from well, and I had to educate myself on how to regain my health. My GP refused to raise my dose of Levothyroxine (I later learned 50mcg is considered a starter dose) and finally referred me to an Endocrinologist. Things improved for me when I opted to take a different form of medication, although most people do well enough on Levo, apparently, if given the right dose. There are excellent online resources , I found the Thyroid UK charity invaluable for help and advice. Take heart, there is much you can do to help yourself e.g. get private blood tests and learn to interpret them, take appropriate vitamins and minerals etc. I have had to do all this as, frankly, my GP has been quite clueless and I’ve had to fight my corner - not easy when I’ve felt ill and vulnerable at times. Pleased to say I am well now, thankfully, with a much improved quality of life. I wish you all the very best on your journey back to good health.

Granmarderby10 Sat 22-Oct-22 05:21:45

You are a valuable patient Ellylanes1 and your symptoms require investigation?

Ellylanes1 Sat 22-Oct-22 01:24:12

Thankyou all for your replies (didn't expect replies so quickly)
If only it were easy to book an appointment! Although a practice nurse chat may be easier to arrange a blood test.
None of us want to use up valuable gp appointments, I will go through the practice nurse route first. Thanks all.

DaisyAnne Sat 22-Oct-22 00:51:46

I agree with Mollygo and Blossoming. It's perfectly reasonable to go back to your doctor and explain your issues.

You should be having a blood test at least once a year and, as suggested, perhaps referred to a consultant. I have to admit I have felt a lot better since taking thyroxine - and I got my eyebrows backsmile I have a feeling that if you don't mention anything to the doctor, they will assume all is okay.

Mollygo Sat 22-Oct-22 00:41:16

Could you go back to your docs with a list of your worries? You can’t feel good taking something where the side effects are so bad.
I’ve been on a higher dose than that since I was 37 and I don’t have any of the problems you mention, but it solved the problem it was prescribed for. Has it done that for you?

Blossoming Sat 22-Oct-22 00:35:48

I think you need to get the blood test and see your GP first. It may be that your Levothyroxine needs to be increased. If your thyroxine levels are not right you may need a referral to an endocrinologist.

Ellylanes1 Sat 22-Oct-22 00:28:29

Diagnosed two years ago, I have been on 50 per day levothyroxine since then, with one blood test check.
My goodness I've piled on the weight, fingernails have gone from being mistaken for false ones, to horrible broken, flaking nails.
Yes I will ask again for another blood test.
Have any other grans with the same problem found the symptoms don't change or improve with the medication? Not expecting miracles but,
I would have thought the negative effects should be controlled by the meds. Maybe I'm being nieve, but I worry what else I can put down to 'thyroid' as all kinds, joint pains etc can be linked.
Anyone else confused?
Sorry, bit of a ramble.