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!

Sounds like me down to a T @BrieAndChilli

I am on 75 mcg , I have been up and down , mostly down, how much is thyroid related I don't know.

I took a year of adjusting dose every 8 weeks and mainly feeling crap, before I finally settled down. I can tell now if I go slightly either way. Too much levo and I get palpitations. Not enough and I get lumpy bruises. Keep going back and try different GPs as some of ours say they listen to the patient. The others just look at the numbers and ignore you.

Just diagnosed as sub clinical (hashimotos)
TSH 7.2, T4 10 I think
They've begrudgingly given me 25 of levo
Being reviewed tomorrow. I'm 5ft 10 and need more than a homeopathic dose

Hi :) could I join please.
I was diagnosed with UAT about a month ago. I have been taking levothryoxine for the past few weeks 50 micro grams.
I feel I have had this for a while but undiagnosed as I have been so low in mood for no actual reason, so so tired and unable to concentrate which is difficult as I'm training to be a teacher.
Recently I have been having awful aches and tingly feeling in my abdomen, usually upper right, I know there can be aching and numbness in feet and hands but I was wondering if anyone else felt this in their abdomen too?
I am so so bloated, I actually look pregnant.
I have had kidney issues and I have also recently come off the pill so I was wondering if this could be related due to hormone imbalance.
I rarely feel cold, if anything I burn up.
But I'm feeling so deflated. Although I'm on medication now, at one point and still sometimes I am unable to even get out of bed.

Took me two years after starting Levo to feel better - in fact for most of that time I felt far worse than before diagnosis. You’ll get there eventually but keep getting repeat bloods every 6 weeks and get your dose adjusted.

I was diagnosed about 20 years ago, don’t know whether it’s autoimmune or not, though - how did you all find out? I was just told my thyroid levels were low, take tablets.

Been on 100mcg for as long as I can remember. Generally feel ok, but get exhausted if I’ve been unwell or under prolonged periods of stress. To the extent doctors have accused me of not taking my medication (I take it religiously) because my TSH levels spike and then recover. It’s a different type of exhaustion to anything else.

In answer to the how I got diagnosed question- my hair was falling out and gp took it seriously and took bloods - I didn’t have anything else much in the way of symptoms tbh. They all started (feeling cold, weight gain, anxiety) after starting Levo and only lifted after the dose was finally right.

I was diagnosed about 6 years ago and in a year my levels dropped and I was put on levo 50mg then over the next few years I often felt worse. Had regular blood tests and gradually ended up on 125mg a day. Went to my new GP telling her o felt awful tired, weight gain, heart palpitations and she looked at my results and straight away lowered my levo and I eventually got to see an endocrinologist consult (she pushed for an early appointment)

Anyway I was taking way too much I went back down to 25mg and now not anything. Your thyroid can fluctuate. I was told it is slightly low but didn’t need any medication but I may do in the future (so have tests every 6 months).

I felt really ill on levo because much of the time I was taking way too much

I would push to see an endocrinologist it’s a complex condition that many GP’s simply don’t know enough about the conditions

I got diagnosed when they did a full set of blood tests to figure out why I wasn’t having periods. In hindsight I was having symptoms (joint pain, exhaustion, dry hair and skin) but thought I was just stressed.

@BrieAndChilli I went to the doctor because I was convinced I was pregnant but pregnancy tests were negative. I’d always been really tiny and was marathon training at the time and started putting on loads of weight which didn’t make sense. I was also permanently exhausted and collapsed in the street a couple of times. They sent me for blood tests and then found I was hypo.

It should be relatively easy for you to get a blood test to check though.

Diagnosed about 25 years ago (as an early teen - god that makes me feel old!). I have Hashimoto’s and take 150mcg a day now. Over the years my dose has fluctuated quite a bit but seems quite stable now. I feel fine - I can usually tell when my dose is low as I start getting what feels like palpitations (I would expect this feeling from taking too much but I wonder if it’s my body going into overdrive trying to cope with the deficit).

Hope you feel better soon. Please don’t let the GP fob you off, ideally see an endocrinologist as it’s quite a specialist area.

@theoneiam1 I had that. Thought I was definitely under treated at 225 mcg as I was feeling so rubbish, but the blood test showed it as over treated which I was not expecting.

I have a thread running at the moment about side effects and have had some excellent advice - Dr Izabella Wentz 's book was recommended on there and I'm ten days in to the Hashimotos protocol and feeling a lot better.

www.mumsnet.com/Talk/ninety_days_only/3921692-Can-anyone-help-identify-these-symptoms-Sore-joints-foggy-head-upset-tummy-bloating-instant-fatigue-piercing-eye-pain-that-medicine-wont-ease-All-after-eating

Hashimotos here - was diagnosed ages 7 but only started to be medicated after I had my daughter at 29. 100mg

Unfortunately even if you feel awful the response from drs is that everything is 'fine'. I had a nice dr who once told me it's because they don't really understand it as there is very little finding for research - lucky us

I was diagnosed about 9 years ago. I mentioned my tiredness to my GP during a routine checkup and I said that it was probably just having young children, etc. She suggested a blood test and it turned out my thyroid was practically moribund! Apparently having children can affect your thyroid so it's always worth checking.

I started out on 50mg, which was gradually increased - annual blood test are essential. I've been taking 150 mg for a while now and that seems to work for me. I've gained 5-7 lbs since taking it, but I think that's mainly to do with a slowing metabolism in my 40's...and a reluctance to tailor my diet according.

Keep pushing for a blood test, OP, that's the only way to find out whether your dosage needs to be altered (and it probably does).

@BrieAndChilli I had an annual medical with my employer. I happened to mention to the Dr about being cold all the time, hair loss, fatigue and brain fog.
Dr recommended I go to my own GP. While I was there I mentioned that I'd been trying to get pregnant, without success and I think this being investigated flagged up the thyroid problem.
I was referred to an Endocrinologist, prescribed medication and got pregnant within 3 months.

Oh and my doctors have been advised to refer me to an endo. Twice. And won't

Diagnosed at 24 after having and being very unwell with glandular fever, it was picked up in the set of bloods I had done. Now 40 and on 200mcg a day. Still symptomatic but unlikely to be increased. Have pernicious anaemia alongside it and get b12 injections every eight weeks.

I was diagnosed about 10 years ago after experiencing unpleasant symptoms including headaches, tingling hands and feet, dizziness, dark vision and feeling spaced out. I had a high TSH of 18.0 but my T3 snd T4 were just in the bottom of the range, so they said it was sub-clinical and I didn’t need any treatment. I eventually managed to get a trial of thyroxine- 50mcg but it made me feel even worse. Eventually my TSH rose to 59.0 and T3 and T4 went below range. I decided I wanted to try natural desiccated thyroid as it contains T3 and T4. My endo was very reluctant but eventually agreed. I found it very difficult to raise the dose as each time I tried my symptoms got worse. I persisted though and have been stable for the last 8 years. I take 2.5 grains which I think is equivalent to 100mcg of thyroxine and 20mcg of T3 (T3 is about 3-4 times stronger than T4 I believe). I have to source the medication myself but the GP does blood tests. My TSH is suppressed at

I have congenital hypothyroidism which means I was born with no thyroid, been taking Levo my whole life (32 years) Doses were always up and down till I was about 18 then they started To steady until I was pregnant. Your tsh levels Can change at the drop of a hat, after I had my daughter 8 years ago I managed to get my levels right and for 4 years had the same dose all of a sudden I went for a check up blood test and they had changed. The array of symptoms you have with hypo is never ending too.

Good morning all. Thank you very much for all the input.

Can I ask what the difference is between "underactive thyroid" and hashi and how you know?

The GP at the time said something like "your immune system is attacking your thyroid" so does that make it Hashimotos?

I was diagnosed 16 years ago after the birth of my first child. Went to the doctors because of how awful I felt and was dismissed as they said it was down to being a new parent and what else did I expect?? Couple of weeks later broke down in front of the health visitor and got another doctors appointment and was diagnosed with under active thyroid and was amnemic. My mother and grandmother also under active thyroid.

I have been on 175mg of levo for this time and am feeling ok. Can definately tell if I have forgotten to take it. It is as if my bones are tired. Weight gain is a big problem (am very overweight) despite watching what I eat and exercising regularly - it's just not fair with the food that I consume I would normally be a size 12 :(

Other effects include flaky skin, hair loss (on my head) leg hair and armpit hair is non existent (only have them waxed once a year no need for more) and DP says that as soon as my head hits the pillow I am asleep. I sleep for three hours then wide awake for a couple of hours and then maybe grab another two hours sleep if I am lucky.

When I was pregnant with my second baby was put under consultant lead care who said this baby would be bigger than my first because of the under active thyroid. Was stressed all pregnancy because my first baby was nearly 9lb and two weeks early with a very difficult birth. My second baby was nearly two pounds lighter and totally natural birth - nothing about thyroids makes sense!

I have been on levo for a few years now - at the beginning I found it really hard and my levels weren’t right - but I insisted on blood tests every three months . I also started tracking my food - as I found some foods made me more sleepy and tired . I used to be the only person on my mid 20 that used to take a nap at 6.30 after work . I’m 31 now and the moment I start to feel my hands shake, tired and fuzzy brain - I ask to get tested . I am on a 100mg however if I feel that I’m getting too tired I do a few days of 150mg maybe for three days and then go back to 100mg as my doctors said that might work better for me then being on a higher dose completely . It’s really hard having an under active thyroid only those that have it under stand we don’t look like we are unwell but have a hidden disease that effects every part of our life. ( FYI I don’t touch any food that has soya - certain vegetables and reduced amount of cows milk)

Yes OP sounds like Hashimoto’s, aka auto immune hypothyroiditis. To be fair I don’t know much about other forms of underactive thyroid but that’s my understanding. There can be quite a few nuances around T3, T4 and TSH levels so important to be seen by endocrinologist. If you are in London there are lots of private endos that are excellent (and I’m sure in other locations too). It is expensive - I paid £700 for a private appointment and significant set of bloods when I was pregnant as it needs careful management - but if you can afford it, one or two appts and the bloods can sort you out and then the GP can monitor from there. Obviously ideal is to get an NHS referral but that might be tricky right now.