Hi everyone I just joined this community due to a very bad day at the GP’s, that has left me really upset & doubting of my own sanity, I hope it’s ok to share this long ramble.
I was diagnosed with underactive thyroid in 2009 after 4 years of symptoms but with ‘normal’ blood test results...after a nervous breakdown due to feeling constantly unwell I was found to be hypothyroid with high antibody levels. My GP at the time concerned by the numbers referred me to an endocrinologist (but he frankly treated me like i was a neurotic crazy person & in his words “I don’t know why she sent you”!)
After a good while of levothyroxine treatment my physical symptoms although never having completely gone improved greatly to the point of being liveable, before diagnosis I had permanent fatigue, dizziness and vertigo for 4+ years.
Fast forward to December of last year when I had a severe vertigo attack out of the blue which left me with residual dizziness on and off since, eventually after being unwell all year a few weeks ago my thyroid levels were shown to be off again & my thyroxine has been upped from 50mcg to 75mcg.
I’m still feeling awful i’m exhausted, my tongue is now scalloped, my legs are stiff, I have an unbalanced feeling 24/7 & all in all i’m just feeling awful as I was before my first diagnosis.
I wanted to go to the doctors again today to find out a bit more given my initial diagnosis was a good few years ago now & ask about the Hashimotos diet I’ve been reading about & whether they thought that could benefit me & just maybe get some reassurance that I will feel better.
....I say to the doctor “ I presume given my high antibodies level that it is probably hashimotos?
To be told “no that’s wrong hashimotos causes overactive thyroid & you’ve never been overactive ....”
At this point I was so utterly dumbfounded, feeling so unwell & pondering if everything I’ve ever read is wrong I burst in to tears & just gave up, if she thinks hashimotos causes overactive thyroid what is even the point trying to find more information.
To make matters worse she said “do you think you’re just anxious” ....
& my scalloped tongue that I’ve never had before I was told “people just have that naturally.”
I’ve never felt so utterly dismissed & dejected.
Sorry for the long rant, I just feel so upset that a GP can be so dismissive of a condition that affects so many people’s lives. I feel powerless in regards to my own health, I lost the majority of my twenties to this & the thought of being unwell again with no end in sight is heartbreaking.
Apologies for the rant. Thank you for allowing me to share my day.
Doubtless there are more of us here than not who have had similar experiences with their first line medics; I count myself among them. You really have to take ownership of this condition. This wonderful resource can help but ultimately you will need to learn yourself how to regain your health.
Don't despair. Feeling dizzy is a common hypo symptom and can often be alleviated by supplementing B12. You need your vitamins tested so we can see what best to advise. Never, ever accept a 'normal' blood result. You have a right to your blood test results and even if you're not feeling well, you must assert your right to have these results as they may help in getting you back on an even keel.
I do hope that the fabulous SeasideSusie sees your post because she can help steer you with the full monty of tests you need to begin your journey back to health. Don't give up. You are here among a group of often knowledgeable and generous fellow sufferers and you can feel better in time.
Best to you. Don't let the b*ggers grind you down xx
I think for too long I’ve just accepted the Tsh once a year & dismissal of symptoms & just put up with it, today was the final straw.
I am already on cobalamin for b12 deficiency that I’ve been taking for a few months, vitamin d for vitamin d deficiency & I’ve been suffering with low ferritin for many years which sometimes pushes into anaemia, I’m now on ferrous fumerate for this. My lowest ferritin level has been 3.
If you can get copies of your blood test results, with the ranges it will help members respond with helpful suggestions. All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This helps keep TSH at its highest as it drops throughout the day.
Sack your doctor. He is another one who is ignorant of anything to do with a dysfunctional thyroid gland and you'd get far better sense on the forum, even if people aren't medically qualified, than consult with your GP.
Eight years have now elapsed from your initial diagnosis and you are really no further forward now than in 2009.
Hashimoto's is the commonest form of hypothyroidism. It consists of high antibodies which attack the thyroid gland and sometime too much (patient feels hyper) and low at other times. Eventually the antibodies knock out your thyroid gland altogether and you are hypothyroid.
If you still have antibodies, these can be reduced by going gluten-free but you may not have them now.
Today is the first day of enabling you to try your best to recover your health and it may be slow but with members' support, you can get there.
Dr Toft, retired from the BTA was the President and even he states in his article, that if antibodies are present we should be prescribed to 'nip things in the bud' by being prescribed levothyroxine.
You need a new blood test i.e. TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Your GP or the lab may not do all of them but you can get those not tested through a private blood test (if you are able to). One lab has a special offer every Thursday.
Ask GP to test B12, Vit D, iron, ferritin and folate. All should be optimal.
When having a blood test for thyroid hormones, it has to be the very earliest test possible, fasting and (if you take thyroid hormones) allow a gap of 24 hours between last dose and the test and take afterwards. This helps keep the TSH at its highest as doctors are apt to only look at the TSH.
Never accept the words 'normal', o.k. or 'fine with regard to tests. Always get a print-out of the results with the ranges. Ranges are important as members cannot respond without them.
Oh dear Hidden Yet another sorry tale of a doctor who knows s*d all about treating hypothyroidism, Hashi's and everything else that goes with this wretched condition.
Never mind, you've come to the right place and let's get started on helping you get better
You've already had advice about getting nutrients tested. Let's see current levels of
Vit D
B12
Folate
Ferritin
Iron Panel
Full Blood Count
Can you also say what you've supplemented in the past for whatever levels were at the time.
And what you are supplementing now.
**
We need your latest thyroid test results (include the reference ranges please)
TSH
FT4
FT3
No need for antibodies really, we know you're Hashi's.
And were you really on 50mcg Levo all these years until the recent increase to 75mcg? Disgraceful. Shame on your GP, that's just a starter dose.
**
So, as for the Hashi's you've already mentioned gluten free, that has helped many members here and it has to be 100% gluten free. That can help reduce antibodies - gluten contains gliadin which is a protein thought to trigger antibody attacks.You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Also, being gluten free can help with gut issues which undoubtedly you have, it sort of goes with the territory when you have Hashi's, and the reason for low nutrients. The lovely SlowDragon has links and information about how to help gut/absorption problems.
Also, supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
A bit of reading about Hashi's, you'll have to help ourself here because you already know that your doctor has completely the wrong idea about it, they really are clueless:
Is there another doctor in the surgery you can see rather than this one?
**
And just a couple of other important points.
1) In case you don't already know, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc., for one hour either side. You can take it any time of day, whatever suits you best - as soon as you get up, before bed (leave 3 hours if your evening meal contains protein), in the middle of the night if you visit the loo. As long as you follow the advice about timing and food/drink.
2) When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.
Keep a record of all your tests, maybe a spreadsheet, and record date, test name, result, reference range, your dose of Levo, any symptoms/how you feel. As long as you follow the advice about timing/conditions for blood draw then you can accurately compare your tests, and it will be a good resource if your GP wants to change your dose and you know that particular dose wouldn't suit you for whatever reason.
SeasideSusie thank you so much for your time and advice, all you lovely people have actually made me cry with your kindness! Just to have people tell me i'm not mad is wonderful.
Yes i've been on 50mcg since 2009 until the recent upping to 75, over the years when i've complained of symptoms the tests have always come back 'normal ranges' even when i've felt very unwell, i've actually had symptoms since i was 19 since i had a glandular fever type illness, i'm now 33.
I luckily discovered the b12 deficiency a few months ago when a doctor decided to do it for the first time since i was diagnosed hypothyroid all those years ago, (despite all my ferritin deficiency that i've known about for years.)
I know im vitamin D deficient too and my ferritins still rubbish!
My coeliac screen came back clear and they did do extra tests that i pushed for due to the fact that i'm IgA deficient. I've got my hashimotos cookbook on the way so going to try gluten free.
Lou, welcome. For what it's worth, I think it's likely you've had hypothyroidism all along.
50mcg levo is only a starter dose and you were left on it too long. Undertreated hypothyroidism has a habit of causing gut problems - you don't produce enough stomach acid when you're undermedicated so you don't absorb nutrients from the food you eat. Over time, most people who aren't well medicated with levothyroxine develop Vit B12 deficiency, Vit D deficiency and iron deficiency. Unfortunately, as you've discovered, many doctors know stuff all about thyroid disorders. Hashimoto's causes hypothyroidism (but will often cause flares of hyperthyroidism along the way as it effectively destroys the the thyroid and while it does so, the gland pumps can pump out too much thyroid hormone).
I'd lay money on you needing more levothyroxine now - but also needing iron, B12 and Vit D supplementation. Scalloped tongue is a fairly classic sign of B12 deficiency but don't treat it blind - get some blood tests done, privately if the GP refuses - so you know what you're dealing with. We're not doctors here but see folk like you every day who are being failed by their primary care providers.
Hugs - you've found us. Keep posting, get some bloods done, we'll do all we can to help you get better - but as Rapunzel says, you'll have to take control. Don't worry - that's not actually as scary as it sounds, and definitely less scary than waiting for your doctor to pull her head out of her backside...
Jazzw thank you so much for the welcome and the wonderful advice.
I think it's very true, i've got to the point i do need to take control, it's controlled my life and i've truly missed out on so much due to it, enough is enough.
I think we can assume your antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Your GP obviously knows absolutely diddly squat about thyroid
You have been appallingly under medicated by the sounds of it. Your vitamins are absolutely dire and following SeasideSusie excellent advice will get you on the right track
As you have been supplementing B12 the tests are unlikely to reflect just how low your B12 is
Increasing Levo dose in 25mcg steps, retesting after 6-8 weeks. TSH needs to be around one, or less and FT4 towards top of range
Changing to a strictly gluten free diet may help reduce symptoms, lower antibodies and heal gut
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk
Hi there, these people on here are a god send, they helped me and gave me kbowledge of this horrible disease because believe me you need this knowledge as its power- more ammunition to aim at useless gps and equally ignorant endos. Go for it!!! Xx
I think i will try for a more informed GP if i can find one
I'm on tablets for the B12 deficiency, (i wasn't offered injections.)
It's such a shame because this Doctor yesterday was the one who found my b12 deficiency and insisted i stay on the B12 after another GP at the surgery told me to stop taking it after 2 months saying that "we don't want you to have too much" (despite me not being retested to recheck any levels).
I think that was why i was so upset in a way because i thought she would be really helpful with this after that experience of her fighting my corner!
Thank you so much again for your lovely advice, i'll have a look at the PA site too.
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