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!

Sorry meant to say, I'm now on only 100mg T4 and 20mg T3. Please read up on T3. It's changed my life. I was feeling so so unwell physically and mentally.

I take Armour Thyroid because I can't convert to T3, which is the active hormone. Levothyroxine relies on you being able to convert to alleviate the symptoms eg exhaustion. Every cell in your body needs T3.

Since the majority of UK doctors don't do thorough testing, I was never diagnosed when I lived there. My TSH never rose higher than 3, but my free T3 was very low.

I do feel a bit resentful that I had years of 'chronic fatigue' and 'fibromyalgia' that immediately began to ease when I started Armour.

I don't listen to the doctors at all! I ask them for all my results and then I make a decision on the copious amounts of research I do on endocrinology. My TSH is 0.5 and that's where I want it to be! I'm on 175mg and they always want me to lower it, but I refuse! I would feel absolutely awful with a TSH of 3, even though it's in the normal range. I was on 300 during both of my pregnancies. My T4 is 17 and well within the normal range. Maybe doctors don't test the T4 but I think it's very important.

Maybe doctors don't test the T4 but I think it's very important.

Good luck getting the average NHS gp to agree to test Free T3 and Free T4!

Even my genuinely excellent clinic for type 1 diabetes (so a higher risk of thyroid problems, with one autoimmune condition already) were only interested in TSH with the yearly thyroid check.

I had just got to the point where I was about to get a full panel of thyroid bloods taken privately (with Medichecks, I think?) but then moved abroad before I got round to it, and saw a good thyroid endocrinologist.

My GP requested a T3 and 4 check on one of my blood tests a few years back but the hospital actually refused to do it and only did the TSH as it wasn’t within guidelines. It is disgraceful.

One of my biggest regrets in life is returning to the UK due to how crap thyroid treatment is here, if we’d stayed in Canada I’m sure I would have suffered much less!

I also recommend the thyroid unlocked forum.

I have tsh which bobs around 3.5 - 5. GP says too normal to medicate. I do have positive antibodies though.

I got a private panel done by medichecks and my t3 and t4 are right at the bottom end of normal range so that coupled with the anti bodies indicate hashimotos.

I am mildly symptomatic but not hugely. At the moment I'm trying a protocol recommended by the thyroid unlocked guys which is cutting out gluten/dairy/caffeine and sugar (meant to be soy as well but I'm veggie and it got too restrictive so I just cut that right back). Also supplement with iron, vit d, and some others.

3 weeks in and I've lost some weight, sleeping better and a bit less achy. I will get another blood test after 3 months. I figured it was worth trying to help myself at this stage and it was unlikely to hurt! I do yearn for cheese though.

I also recommend the thyroid unlocked forum.

I have tsh which bobs around 3.5 - 5. GP says too normal to medicate. I do have positive antibodies though.

I got a private panel done by medichecks and my t3 and t4 are right at the bottom end of normal range so that coupled with the anti bodies indicate hashimotos.

I am mildly symptomatic but not hugely. At the moment I'm trying a protocol recommended by the thyroid unlocked guys which is cutting out gluten/dairy/caffeine and sugar (meant to be soy as well but I'm veggie and it got too restrictive so I just cut that right back). Also supplement with iron, vit d, and some others.

3 weeks in and I've lost some weight, sleeping better and a bit less achy. I will get another blood test after 3 months. I figured it was worth trying to help myself at this stage and it was unlikely to hurt! I do yearn for cheese though.

My friend has Hashimotos. She has cut out dairy and gluten as well as sugar. It has transformed her health.

Can anybody please tell me how you know whether what you have is hypothyroidism, or whether it is Hashimoto's?

My last tests were
TSH 4.35
T4 10.1
TPOab 612.9

I didn't get any explanation from the GP, just a prescription for 50mcg levothyroxine. Felt a little better for a while but now worse. Currently waiting for another blood test. It would be nice to know what is actually wrong with me, and whether a change of diet might help with it.

@42andcounting, it's the presence of positive thyroid antibodies which suggest Hashimotos I believe as it's an auto immune condition.

It's the autoimmune bit which is what makes the gluten free option worth considering as it may reduce inflammation/leaky gut which relate to auto immune response (I think - happy to be corrected by a cleverer person). Apparently 70% of Hashis benefit from gluten free.

@menofharlech Thank you so much! I think I may have to sacrifice my love of bread and give gluten free a try then....

I have Hashimoto and also T1 diabetes. I have levo and have done at varying dosages for 4 years. I take 100mcg during the week and 20mcg in the weekend. Took me a while to work up to that. I get my bloods done every 3 months. I feel best when I’m towards the top of the range.

Other factors for energy levels for me include adhering to a low carb diet, taking vitamin D3, ensuring my iron, zinc and B12 intakes are optimal, keeping stress levels under control and blood sugar in range. It’s a balancing act.

I’m a solo Mum, I work full time as the lead in my specialism at work and I sit on a charity board.

I’d recommend a referral to a Endo if your GP doesn’t listen to your concerns.

Thanks for all the input and hopefully helping a few others along the way too.

Will ask for bloods to be redone as a starting point and make sure I get the results!

I wasn’t started on enough Levothyroxine by gp but asked to be referred to endo unit and specialist was able to put me up faster

You need to know exact T-shirt and personally I find I feel best if that is under 2. I always ask for the number at every appointment

T shirt tsh!

hi - sorry this is an old thread.

Have had an underactive thyroid for approx 6 years - medicated for those but took 2 years to get levels right and now on 150mg of Levo.

was just speaking to younger work colleague and she is also underactive but only on 50mg Levo.

What she's told me though is she's at the gym 5 days a week as she puts on weight easily and so do I.

I put on weight but lose it easily.

Anything I need to know, books I could read, websites etc? thanks

[quote FizzyPink]@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.[/quote]
I had literally the same symptoms as you.

Was diagnosed at approx 40 years old. Felt like I was wading through mud and treacle and exhausted despite sleeping loads and also gaining weight loads too. Also mood swings. Always thought all of the latter was PMS now know it was underactive thyroid.

I collapsed in the street a few times too but it was more like fell over - completely - to one side - quite worrying for me and people round me! That's gone now.

Despite having to be tested for approx 2 years before they got my Levo levels correct I still hate blood tests.

Another great symptom due to levo I think is my metabolism speeded up but meant I couldn't control weeing - or urgency - so now on Oxybutolin (or something similar).

Funnily enough been pregnant a few times but had termination once and miscarriages the other 2 times. Wondered why miscarriages never thought to link to thyroid.