If you have an underactive thyroid...can I pick your brains?

[MrsJonesAndMe]

How long have you been diagnosed? Do you take Levo? Are your symptoms under control? Anything else you do to help?

I've had issues for ages before the GP agreed to medicate almost exactly a year ago. I'm on 50mg and after initially feeling better, I didn't by Christmas. Had bloods done and was told it was "fine" and now here we are in July and I'm utterly exhausted...but how much is thyroid and how much is the fact that I'm working and home schooling and in the midst of a stressful situation trying to keep all the plates spinning?

Just musing really - sometimes it's just useful to hear from others!

I was diagnosed about 5 years ago but took a year or two for me to decide to start taking thyroxine and only did because I was absolutely exhausted to the point I’d need a nap every day. I was also putting on weight when I’d always been a size 6-8.

I take 50mg now and never really thought about what it was doing as I feel fine. However last week I unexpectedly ran out and didn’t take any for 4 days and felt absolutely awful. I’ve never felt anything like it and was actually worried I was coming down with Covid.

I’m not massively clued up with the ins and outs of T4, TSH etc and I’m sure someone more knowledgeable will be along soon but I do think it’s very subjective and although your levels might be okay, if you feel awful still, you may need to up what you’re taking. GPs really aren’t experts and none of them seem to agree with each other either

I take 250mcg which is the highest dose I can take without getting unwanted side effects. It took a long time to get to that level and it’s still hovering just into normal range.
Mostly I feel fine but if I forget a few doses, I certainly know it.

I was diagnosed about 3 or 4 years ago. I take 100micrograms because I had read that most people feel better if their tsh level is close to 1. My readings on this dose are about 0.8-1. I usually feel fine, I have been exhausted this past week but my feet are also really achy which is always a sign that my vitamin d levels are low.

I was diagnosed at about 13. 28 now and it has been very well controlled throughout that time. I take 100mg a day and have been taking that doseage for a long time.

Although my levels are always fine, I do find that I feel absolutely exhausted at times. Especially if I have lots of at work and at home or if I’m unwell. The only thing that works for me is trying to sleep a bit more but that’s impossible most of the time!

I was diagnosed 16 years ago, picked up when I went to my GP about failure to conceive.
I'm taking 50mcg of Levo daily, reduced from 75mcg about 10 years ago by my GP.
I am always cold, fuzzy brain and generally lethargic. I have yearly blood tests which always come back within range

I had graves in 1990 and had a subtotal thyroidectomy rendering me hypothyroid. I have subsequently taken 100mcg for 25 years, increasing to 112.5 post menopause. Annual blood test.

During that time I have got married, had two children ( a lot is miscarriages but evidence is now pointing to a link), have always been quite high energy. At 60 do a director level full on job and manage two homes.

I don't really get the link between well treated hypo and exhaustion.

Ohtheroses, I had recurring miscarriages too. My periods would also be 6-7 weeks apart before having my only DC.

Yes, I had long gaps before the graves was diagnosed but not since. A slightly earlier menopause too than the norm for my family.

Thanks for all the responses.

I'm pleased to hear you haven't any problems with exhaustion @OhTheRoses but I think it's a reality for many - especially as GPs seem to just work on the "numbers are in the normal range" and not that interested in the general wellbeing.

I think I was diagnosed about 3/4 years ago. At every annual review they seem to up my dose. I take 100mcg Monday to Friday and 200mcg on Saturday and Sunday. In general my symptoms like tiredness are vastly improved (but I also get 3 monthly b12 injections which helps!) but I still really struggle to lose weight.

I have auto immune under active thyroid (hashimotos). Diagnosed 12 years ago.

GP's are notorious for under dosing medication based on out dated blood tests.

Read the entirety of the website stop the thyroid madness. Particularly the correct blood levels.

It will take months to understand it all and you will need to be prepared to challenge the GP. X

@OhTheRoses exactly the same found to have graves whilst struggling to conceive and subsequently miscarry a few times. Had a total thyroidectomy and put on a dose of 150, then on a regular blood test found to have dipped quite significantly and released I had been having a lot of symptoms but had been putting it down to running after the kids.
I’ve been on 200 ever since and still feel like crap most days but they claim they are in range.

I was diagnosed maybe 10 years ago and have been up and down on mg of levo. In my experience the doctors are reluctant to increase your mg. I seem to go through waves of feeling great and then waves of absolute exhaustion. I've also found if I eat rubbish food I feel horrendous..

Hi OP,
A good place to get advice is the Health Unlocked website which has a dedicated Thyroid section.

Also, when you phone for your blood test results ask for the actual numerical results (you are entitled to this) and check the TSH, FT4 and FT3 against their range values. Eg, your THS may read at 5, but the range value is 0.5 - 4. This would mean that your thyroid is underactive and levothyroxine needs to be increased. Most GP surgeries only give out results as "normal" when in fact you may be at the higher end of normal and feel unwell/ present symptoms of being underactive.
I find that I feel best when my thyroid is suppressed and TSH is under 0.5 and FT4 is at higher end of range. However, persuading my GP to keep to this is difficult and he has reduced my dosage of levo a few months back. Now I'm feeling unwell again and the weight is creeping back on, which in turn puts stress on my joints. So I'm going to have to argue once again to increase my dosage. It's a never ending battle.

I was diagnosed 14 years ago , my doctor friend at the time said I needed a fasting blood test as I was feeling the cold even on a hot summers day , eventually ( several years later ) I was finding myself completely and utterly exhausted , I went for a fasting blood test and was found to be very under active I started on 100 mcg and was tested by fasting blood test approx every 2- 4 weeks and medication adjusted accordingly , eventually it was 300 mcg per day and then was reduced gradually to (now) 175 mcg , I think it's very much a case of everyone experiences differing symptoms and your dosage will vary from time to time with settled periods of time in between
Symptoms I've experienced along the way - extreme tiredness initially and itchy shins , cold all the time , now no longer have these symptoms but know if I miss meds I will feel tired a few days later

I was diagnosed 21 years ago and now take 175mg with annual blood tests. No exhaustion, no brain fog and definitely don’t feel cold. The only real symptoms I get are a goitre but as it is under control haven’t had one for years.

I do think small children and work are exhausting though. Perhaps I've just been lucky. My TSH is closer to 2 than higher.

When I had graves I was under Sir Richard Bayliss privately. DD has Addisons and a couole of apts with a marvellous endocrinologist paid dividends.

I was one of the earliest members of The British Thyroid Foundation and think their advice and work are marvellous. Would recommend.

Similarly had difficulty getting pregnant and suffered miscarriages. Thyroid problems are a bitch.

Hi,
I'm under active and have been for 5 years. Have been taking 100mcg , no problems.
However recently I've started to feel like I need more thyroxine. I've been feeling exhausted again, bad stomach really often, painful joints, dry skin etc. So had my bloods done.
I've had a text from gp today which says:

"Your TSH is 0.23. It should be between 0.27 and 4.2 which shows that you a maybe on a little too much levothyroxine. I would stick to the same dose and recheck in 6 months not 12 months. "

Has anyone had anything like this before? So I'm actually "over medicated". The opposite to what I thought I was!
And is it really a case of waiting 6 months still feeling awful?!
Thanks in advance for any replies. Sorry to jump on your post !

Sorry to jump onto your thread OP but can I ask the other posters how you got diagnosed. I feel like if I’d go to the doctors they will just say my symptoms are normal busy mum life. How did you know there was something actually wrong?
Some of my symptoms are feeling exhausted/brain fuzzy/lethargic all the time no matter how much sleep I have had,
Anemic (currently taking iron tablets prescribed by doctor)
Pins and needles in my hands most days
Cold hands and feet even in the height of summer
Although I’m the hairiest hobbit person alive I can pull loads of hair out when washing my hair in the shower
Constipation
Flaky dry skin

I was diagnosed because I went to the gp due to having constant thirst. I was convinced it was diabetes, but they did a raft of blood tests and diagnosed my underactive thyroid and pernicious anaemia from that. Those are classic symptoms though and I would just outright ask them to test your thyroid levels.

Thanks for all the info and experiences

No idea @theoneiam1 but hopefully someone else can help! I'm surprised you've even been in for a blood test. Our GP seems shut up tighter than Fort Knox.

I highly recommend getting a copy of your blood test results. Being ‘in range’ can still leave you feeling very unwell. Your TSH should be below 1.0.

Hi I'm on 175mg been on it since I was about 19 in 27 now. It has gradually gone up and up starting at 50mg back when.

I personally don't notice anything I was a bit more tired which is why they upped it to 175mg from 150mg on my test last year. I then had my 6 monthly and it has stabilised. I will now go back to annual blood tests.

However when I forget to take it for a while my mum and fiance both shared a knowing look when we were discussing it. He said I'm a bit more sluggish and sleepy.

I think if you are still feeling knackered I would push to try upping your dose a bit.

I have been diagnosed for 15 years. I only feel well when my TSH is really low - 0.05 or thereabouts. I persuaded my doctor to let me take liothyronine (10ug) as well as levothyroxine. (100ug).