Hypothyroidism - GP tomorrow, what to ask?

[GoneGirl1234]

I was diagnosed with hypothyroidism about 9 months ago. I've been taking thyroxine since diagnosis but GP hasn't found the right dose yet - lots of blood tests and changing my prescription in an endless cycle.

Over past 3 months I've been feeling much worse (close to how I felt before I was diagnosed - bone-crushing exhaustion, depression, trouble sleeping, nails that are flaking, muscle aches). I've got an appointment with my GP to discuss my latest blood test results tomorrow but I've also read so much about other things that can also come into play with hypothyroidism, such as B12 etc that I want to ask my GP to look beyond the thyroid blood tests and also test me for some of these other conditions.
My question is, to any other hypothyroidism suffers - what else should I be looking at?

Thank you in advance for any advice :)

[Pitapotamus]

What were your latest results? Surely that's the starting point in deciding whether you need to look for another cause or whether the thyroid is still to blame...

[NerdsAndMonsters]

Have you also had bloods :
Full Blood Count -to exclude anaemia
B12 & Folate
Vitamin D
Iron Stores -to check if your ferritin levels are low?
Possibly Coeliac Antibodies too, if you have any symptoms of Coeliacs.
FWIW it can take ages to feel better, it took me about 18 mths.

[NerdsAndMonsters]

Also as PP says, what were your last TFT results; TSH & Free T4? Free T3 ?

[Sunnie1984]

Have a read of stopthethyroidmadness.com

It will give you more info than I can remember - total life saver when I got diagnosed.

As a general - blood tests to have:

TSH
FT4
Ft3
Thyroid antibodies
Bit b12
Vit D
Iron


Take thyroxine in the morning with water and eat/drink nothing for 40 minutes.

Get copies of your test results, just because it is in the normal range does not. Mean it is normal for you.

Good luck!

[ivykaty44]

See my GP said I didn't have to take thyroxine in the morning or worry about eating as that was old advice and the leaflets hadn't been changed. I know there have been studies on people taking medication at night and this didn't seem to effect the medical effect.

If your tsh is not within the normal range then you can find out what your t4 & t3 levels are.

What levels are they now and how much thyroxine are you taking?

[GoneGirl1234]

Thanks for replies so far, I really really appreciate you all taking the time to reply 😊

I forgot to mention I had my last thyroid blood test on Monday and had a call from GP surgery to come in to discuss (they don't give results over the phone unless everything is normal).

The result my GP goes by is changes in my TSH level rather than T3/T4 but I will ask for a print out of all my results to date.

At the beginning of the year when I was diagnosed, my TSH was 4.8. After 6 months of thyroxine I was feeling a bit better but still with some symptoms so saw GP again & had 2 more blood tests about 3 weeks apart. TSH had gone down to 0.2 (so they halved my thyroxine dose (GP said normal range is 0.4 - 4.5). I started feeling really awful about 3 weeks into this new dose but due to various circs couldn't get blood test until 6 weeks into new dose by which time my TSH had gone up 5.2 (even higher than when I was first diagnosed!)
GP increased thyroxine dose but not all the way to original dose and said we'd retest in 4 weeks, which is the test I've just done & waiting for results.

Ever since the dose was changed in the summer I've been feeling worse and worse, and the recent increase has made no positive difference, I actually feel even worse than I did before.

I know it sounds like I'm jumping the gun with looking for causes other than thyroid, and I do definitely feel like GP needs to address thyroixine dose because I have got 200% worse since it was initially changed. But with hindsight I really feel like I was SO close to finding a manageable level back in August, I had way more energy and was starting to feel a lot improved ... I just wasn't "all the way" better if that makes sense, and so wondered if there was anything else at play. It feels like GP made a dramatic change to my thyroxine dose when a smaller change and some other investigations might've been what was needed.

NerdsandMonsters - I've had coeliac testing done & had consult was a gastroenterologist a few weeks ago. Results shows no evidence of coeliac but my blood tests do consistently show slightly raised inflammatory markers. I was diagnosed with endometriosis earlier this year too (2016 = stellar year for me!) but had Mirena fitted in June and endo symptoms have completely vanished.

Sunnie - thanks so much for the list, that's exactly what I was looking for - I will discuss with my GP.

[GoneGirl1234]

I was on 50mg at first, then down to 25mg, now doing 50mg and 25mg on alternate days.

[GoneGirl1234]

Oh and last bit drip feed info!

Because of gastro symptoms and coeliac test coming back normal, consultant & GP are in agreement that IBS seems more likely and I have been referred to NHS dietitian for help with FODMAP diet.
I have a history of eating disorders so I really really didn't want to do an exclusion diet without professional guidance.

[GoneGirl1234]

Gah! Hit post too quickly ... I have been referred to dietitian but have not seen one yet, I'm waiting for my first appointment to come through.

[ivykaty44]

It's a shame your dose was halved from 50 to 25 when your tsh went down to .2

Rather than giving you a dose as it is now, in between. Which will hopefully keep you much more level. Problem is you can be given to much as it will effect your heart rate, therefore can be dangerous.

[Sunnie1984]

My TSH always sits at 0.1-0.2 when I feel well. I need my FT4 and FT3 at the top of the range to feel well.

Your TSH is not made by the thyroid, so it's not always the most reliable indicator of being adequately dosed.

Particularly seems to be the case if you have hashimotos (autoimmune thyroid).

My TSH was normal but my thyroid antibodies were 5 times what they should be.

I personally feel better when I cut out gluten, although I struggle with it!

Vitamin supplementation helps me a lot. I take the following daily:

Vitamin b complex
Vitamin d
Magnesium
Zinc
Selenium
Probiotics

I get really sluggish without vitamin b and d. I take the probiotics to keep my gut healthy, as I want to make sure I am properly absorbing the supplements and medication.

Are you getting enough sleep?

[Sunnie1984]

Oh and are you taking the thyroxine before your blood tests?

I find if I have taken it before blood tests, or spikes my results to suggest I am taking too much. I get bloods taken first thing in the morning and then take my medication.

[PoshPenny]

OK. Thyroid Uk website and tpauk.com
I had awful digestive issues, I went on a gluten free diet for 2 years which helped a lot, but finally had endoscopy and biopsies and I don't have coeliac. Now I'm normal digestion again, thanks to finding the right dose for me. I put it all down to undiagnosed and then under-medicated hypothyroidism treatment leading to low stomach acid which was responsible for all my digestive troubles.

Go on those websites. They were a godsend to me when I was trying to get diagnosed. But was always being told my results were "normal" so it couldn't be my thyroid.

[GoneGirl1234]

Thank you all, I will check out those two websites for more information and I will ask my GP for a print out of all my results, not just the TSH.

My appointment was cancelled this morning as GP has flu but I've been rebooked tomorrow with a different doctor so fingers crossed I will get some more answers.

I am sleeping between 8 and 10 hours a night purely because I am completely exhausted by 9pm and just cannot keep my eyes open. Yet I have to drag myself out of bed in the morning and I don't feel at all rested or refreshed.

I'm trying to stay positive, I keep telling myself at least I know it is my thyroid and I can work with the GP to get it under control, but I've been feeling so depressed over the past couple of months because it has changed so much of my life. I used to love going to the gym and running, yet now I struggle with just going to work. I've gained about 30lbs in the last two years and no matter how good I am with my food it just isn't shifting (and although I do exercise, I can't keep to the same schedule I used to have).

[ivykaty44]

Gone, can I ask how old you are?

[yellowpostitnote]

Everyone is different result wise - my best tsh is 0.6-0.8.

It's wise to go on symptoms when you're stable but you're not stable yet.

It's possible you are still fluctuating a bit and you might be deteriorating further and need more thyroxine. The tricky thing is there's a delay in symptoms often too. Waiting a good 6-8 weeks before testing to see how you feel is a good idea (even 3 months) but frustrating too if you're feeling rough.

Definitely ask if "other issues that can cause similar symptoms" can be tested (a good tact) e.g. Vitamin d, ferritin and b12. (Pernicious anaemia is also auto immune and can be linked like coeliac).

I've recently had tummy issues too - I tried very basic fodmaps (avoided lactose, gluten, onions, garlic and food with lots of fibre e.g. Museli and beans and lentils and also took a lot of probiotics) and I did feel much brteee.

It's worth remembering though that a very low tsh and high t4 can cause food to shoot through also, and also causes muscle aches and pains, and a weird wired tiredness too.

Tsh is the most stable result - t4 and t3 can vary at different points during the day. They're good indicators too (t4 more stable as it's half life is 7 days; t3 is a few hours) BUT it is just a snap shot and it's best to look at symptoms.

It can take a frustratingly long time to get sorted out with thyroxine at first, and very good to get the other bits top notch too (vit D etc), which can take a few months. Then you can assess symptoms better.

I find sleep a good indicator; if I sleep 7-8 hours a night (if allowed to!) I know that's good, and able to not nap. Also puffy ankles show I'm not great. I used to be able to go by stools (constipation was under, too runny was over) but since mild ibs that's not really working!

[yellowpostitnote]

Ps you WILL recover and if you're previously a gym lover, that's great. Once you feel better / your levels are spot on you will be able to slowly build it up again. Keeping strong is important with thyroid issues but you won't be able to till it's sorted out.

Go easy on yourself. You have a chronic condition that takes a while to get sorted out. It causes depression as it affects your executive function and memory- so you know you're struggling.

It WILL get better, I promise. Keep working with your doctor and pacing / letting your body sleep when it needs to.

[yellowpostitnote]

Please get this book

https://www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191?tag=mumsnet&ascsubtag=mnforum-21

It explains lots if things and explains why tsh should be around 1, not "between 0.3 and 4.5". It's by the BMA so you can embarrass show it to a GP if they say that 2.5 is 'fine'.

It also lists things like pernicious anaemia etc .

[ivykaty44]

Your tsh is the indctor of how much t4 is in allows through, my consultant explained that it's like a trap door and the lower the number the further open the door is allowing t4 to be produced ( which turns into t3) and the higher the number the further closed it is preventing t4 being made.

[BobbyNoggle]

Like the trapdoor analogy pp!

TSH also does have circadian 24 hour fluctuating levels. TSH is not static during the day.
TSH level is highest at around 4-5am and then decreases during the day.
That's why-in order to get an accurate level for dosing re hypothyroidism - you must always have your bloods taken as early in the morning as possible-when your TSH will be at its highest.
Hopefully the bloods drawn then will capture the most accurate thyroid scenario. There's absolutely no point in having bloods TFT taken pm & never take your thyroxine before the bloods are taken.

[Kai1977]

Keep pushing until you feel better. It may take a while and don't get disheartened by this but I find that most GPs just don't know the complexities. It was only when I got referred (privately) to an endocronologist that I felt properly better because my dose was increased. The existing GPs insisted I was in the right range but the specialist said the range was just that, some people will feel better at the top of the range and others at the lower end.

Also agree re vitamins, I don't seem to be able to absorb them as well since I was diagonosed so the supplements have helped massively.

Some GPs insist that it's just the way it is with hypothroidism, it's not! Keep trying with them.

[BobbyNoggle]

Totally agree with Kai.
I also had to go down the private endocrinologist route to recover my health.
I am much better on a gluten-free diet & all the Vitamins /Minerals detailed on this thread. It all takes time -just keep persevering & think about asking for a referral. IME GPs keen to do Private as opposed to NHS referrals ( latter may affect the GP practice budget?)

[yellowpostitnote]

Yes totally agree.

I always get my blood test early in the morning and before I take that days meds.

It does fluctuate but not as much as t4 and t3, and changes in response to t4/t3, giving a reflection of the average amount in the body that week. (During pregnancy mine changed very quickly).

But, it's worth remembering, often the GP 's hands are tied as the labs follow strict rules and only test t4 if tsh is outside the ranges. I know if a few times the GP specifically requested t4 but the lab did not. (NHS)

The best course of action is to get tsh to around or just Below 1 and stable, get your other ducks in line (vit D etc) and then tweak form there after a 2-3 months. As then symptoms can be best weighed up.

[yellowpostitnote]

Endos do allow higher amounts as they know some people feel better that way. But, increasingly, i find my gps keep it just below 1 if I feel ok at that level.

[Sunnie1984]

Agree with almost all that is said by other posters.

To clarify - I also have a pituitary issue in that my thyroid doesn't seem to communicate well with the pituitary... causing a very low TSH even when t4 and t3 are out of range (according to my private endo).

Definitely agree with the poster who said TSH around 1, supplements taken every day as listed above, wait 8 weeks and then consider remaining symptoms.

The majority of your symptoms should be resolved by then and it will just take a bit of tweaking.

You will get back to the gym! For now, walking and low impact like swimming/yoga/Pilates are good for keeping your muscles working without derailing your body responding to the medication.

Save the circuits etc until you are really stable.

I've been able to do circuits three times a week (pre-pregnancy) and lose the weight, so it is possible.