Hypothyroidism, advice please.

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.

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?

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 back I have a feeling that if you don't mention anything to the doctor, they will assume all is okay.

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.

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

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

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

Well said Granmarderby10!

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.

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.

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.

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.

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.

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?

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.

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.

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

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.

I was diagnosed through blood tests 20yrs ago. I’ve been on 125mg of thyroxine since then. I have my blood checked once a year. Feel fine. Weight could be better but I have a sweet tooth.

Okay I’ve been taking this for 40 years. The dose does vary, generally as you age you will have to have less because of the negatives. My nails continue to be weak and flaky so I take particular care of them, strangely my toenails are ok.
My hair thinner than in my youth but still ok. I know when I need more as I get fierce fatigue attacks. But as I get older I know the dose is unlikely to be raised much more .
I’m currently on 100 a day

Thanks DaisyAnne that’s interesting. I do have diverticulitis and I find that IBS tablets help me. I will I’m investigate going down the food line.

I avoid my doctors as they ignore what I say and keep trying to reduce the tablets and I know the result of that !! However my endocrinologist is very caring. When I see him in a few months time I will ask him to refer me to someone who deal with food/diet. I could go privately but that could cost mega bucks but it may be worth it.

I’ve got underactive thyroid been on 50micrograms for 18 years have thyroid checked every year, despite having thin fine hair, flaking nails, dry skin my drs refuse to increase the dose, saying they are satisfied that I’m on the correct dose

Go back to the doctor. I guess two years is plenty long enough for the tablets to work if they are going to work.

I'm another hypothyroid person and am now taking 75 mcg Levothyroxine, but a previous doctor back in 2009-2010 kept suggesting an increase in dose until I was eventually taking 200 mcg. I still didn't feel much better but blamed all my other illnesses.

Then suddenly my heart went crazy and my blood pressure shot up and I collapsed. It turned out that I'd gone from Hypo to Hyper and blood tests showed I was very very Hyperthyroid. It was terrifying. I thought I was having a heart attack.

My Thyroxine dose was immediately reduced to 75 mcg and I was prescribed beta blockers for 3 months to stabilise my heart, which fortunately did the trick, but it took me a year to physically recover from the shock to my system.

My flaking nails have improved tremendously due to taking collagen powder and now they are long and rock hard. Sadly the collagen didn't save my hair and I now have to wear a wig, and my eyebrows are still pretty non-existent.

Also UAT and have been on 75mg for a number of years ,
also because of unavailability of GP and blood test appointments I hadn’t had a blood test since before Covid.

However recently went to practice nurse for flu jab couple of weeks ago and she picked up I hadn’t had a blood test for thyroid levels. Used to go yearly before Covid.
Anyway went for my blood test and made appointment to see GP for results following week.
Day after blood test arrived home to find thyroxine tablets had been delivered from pharmacy where I get my medicine from
100mg
It turned out GP checked blood test and I wasn’t on right dosage so my levels were pretty low. At my GP appointment I will have to have another blood test in January to check I am on right dosage and after that make sure I arrange yearly blood test.
You do need to have a blood test and see your GP