I'm new here (and scared): After being hypo for a... - Thyroid UK

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I'm new here (and scared)

thiredofthyroid
thiredofthyroid

After being hypo for a few years my blood results came back and I'm hyper (along with a potential liver condition, low folic acid and anaemia). I feel like the last few months, having hyperactive levels of thyroxine have made my moods worse. I mean they were bad enough with stress of exams, work and covid, but this was the icing on the cake. But no one around me understands the impact of thyroid on mood, and it makes me feel alone and selfish. Has anyone else experienced really bad moods and sudden switches in thyroid?

82 Replies
SlowDragon
SlowDragonAdministrator

Please add actual results and ranges

How much levothyroxine are you currently taking

Presumably you have autoimmune thyroid disease

This can cause temporary hyperthyroid symptoms and results, but is not true hyperthyroidism

Important to regularly retest vitamin D, folate, ferritin and B12

Important to maintain optimal vitamin levels as this improves symptoms

Please add vitamin results and say exactly what vitamin supplements are you currently taking

My serum TSH is 0.19mu/L (it was 3.24 in August), my T4 is 19.5pmol/L (it was 17.9 in August).

That is reassuring thank you.

Folate level is 2.8ug/L (decreased from 3.4 in 2019), RBC is 4.98 10*12L and my serum ALT level is 83 U/L.

Vitamin D and B12 are seemingly okay.

I'm just so confused with so many numbers everywhere. I'm on alternate doses of levothyroxine (25mg one day and 50mg the next), 210mg of ferrous fumarate, 40mg verapamil (3x a day) and 5mg folic acid)

Hope this helps

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

How old are you roughly

How long on such tiny dose of levothyroxine

Which brand of levothyroxine

Your extremely low dose levothyroxine will be causing low vitamin levels

Essential to improve all four vitamins to GOOD levels and to get levothyroxine dose increased slowly upwards in 25mcg steps

Folate is presumably deficient and prescribed folic acid

How long have you been taking folic acid?

What was latest ferritin result and how much ferrous fumerate are you prescribed

It takes many months to improve low ferritin

Please add actual vitamin D and B12 results and ranges

Recommend getting FULL thyroid and vitamins tested

Likely you have low Ft3 and high thyroid antibodies

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

NHS easy postal kit vitamin D test £29 via vitamindtest.org.uk

I'm between 21-23 years old and I've been on levothyroxine for 6 years. I was on 50, then 75, then 25, then 50, now alternative doses of 50 and 25.

My 50mg is MercuryPharma, and my 25mg is TEVA UK.

Ferrous Fumerate is 210mg and the level is 40 at the moment. It was last checked in January 2021.

How would I know if my antibodies have been checked?

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

Thyroid antibodies should have been tested when you started on levothyroxine

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

It seems as though my antibody level was 12 kU/L in 2018 so that is okay I'm assuming?

I didn't know about the difference in brands, my pharmacy interchanges brands quite often!

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

So you need to test BOTH TPO and TG antibodies privately

NHS refuses to test TG antibodies unless TPO are high

Significant minority of Hashimoto’s patients only have high TG antibodies

If both TPO and TG antibodies are negative, request ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Thank you, I think I'll get it all tested privately then

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

Your vitamins are terrible BECAUSE You are on too low a dose of levothyroxine

Low vitamins tend to lower TSH

TSH is far too often all GP looks at

I can't see evidence of hyperthyroidism or even over medication really. Your symptoms are probably to do with your vitamins bring low (low folate made me dreadfully tired) or perhaps poor conversion to T3. I'd get private tests done via eg Medichecks or Blue Horizon ASAP, then post results here for advice. Ensure you get bloods drawn first thing and 24 hours away from t4. Get tsh t4 and T3 levels then post here, along with the ranges so people can get a full picture.

I'm guessing the GP was wrong in that case for saying it's become hyper? Which test would you recommend from them?

I couldn't see any ranges with your results - were you over the range? I like Medichecks because I like the interface but there's probably cheaper ways. I also pay the £30 for the blood draw and book at my local hospital as I have no luck squeezing blood from my finger. You'll see the posters here are people who've realised they've got to get to grips with the condition themselves as so many docs just know so little and are remarkably opinionated given how little they know!

So my TSH was lower than it should have been (0.19 instead of 0.27-4.2mu/L) but my T4 was normal (according to my GP and online results anyway).

I do want to sort this out on my own now, I feel like the years I should be working hard and having fun are being spent in bed, with horrid moods and pains!

0.19 is not that low and definitely not suppressed. I'd really be interested to know what your T3 is. It could be that you don't convert well so your T3 is perhaps not as high as your t4. But you need to know the ranges. Once you get a full picture, you'll be able to make a plan.

One issue is that docs don't update their knowledge so hold onto ideas that are no longer believed eg that you mustn't have a low tsh.

Check out the NICE guidelines and read lots of posts here. You'll learn a lot.

Thank you so much. I'm looking into a private test.

Don't be scared :)

This is a kind and helpful forum - well done in finding us quite early in your thyroid journey.

In addition to all the excellent advice from SlowDragon let me add a few things:

* if you are on levo you are hypOthyroid (underactive) not hypERactive

* the aim, when on thyroid meds, is for both free T4 (inactive thyroid hormone) and free T3 (active thyroid hormone needed in every cell of your body) to be nice and high in range. Of all the blood results, free T3 is probably the most important - but is the least tested, so it may be worth getting TSH, free T4 and free T3 tested together privately to see how you're doing

* always have an early morning, fasting blood test when TSH is highest (because so many GPs only really look at TSH although it's pretty irrelevant once you are on thyroid meds)

* don't rely on the GP telling you how to improve your health: they are too busy and get too little training in thyroid - it's down to YOU to badger for dose increases when you need them and the testing you need. I've hd some success with my GP by saying that the full testing Slowdragon suggests is what is recommended by Thyroid UK

* always get your actual blood results and the related lab range (lab ranges vary from lab to lab) - both so you can see what has been tested and what your exact result is. Don't be fobbed off by some receptionist telling you it's "normal" or "in range" - you want to know exactly where in range you are

* you don't want to be "in range" you want to be "optimal" - it is possible! For example, if the lab range for free T4 is 12 - 22 and your result is 12.5 you will likely feel dreadful but if it's 19.5 you will feel much better - but both are "in range". Equally, nice and high free T4 but low free T3 means you probably won't feel great

* YES you will potentially have all sorts of mood / anxiety etc issues with thyroid levels being wrong - because it's hormonal ...

* finally, it's worth a good rootle around the hypo section of the main Thyroid UK site and to get to grips with the jargon, may I recommend helvella's excellent glossary to all things thyroid - saved as a "pinned post"

Good luck x

So when I had my fasting blood test in the morning, my TSH was low. I'm confused about that.

I will definitely have a read around because I'm genuinely so confused!

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

When under treated and still hypothyroid this results in low stomach acid

Low stomach acid leads to poor nutrient absorption and low vitamin levels

Low vitamin levels tend to lower TSH levels

Low vitamin levels results in poor conversion of levothyroxine (Ft4) into active hormone (Ft3)

This results in high Ft4 and low Ft3

High Ft4 can make you feel wired and a bit hyper

But low Ft3 means you also feel hypothyroid and are hypothyroid

First step is to get full thyroid testing

Get all four vitamins at GOOD levels

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Then retest thyroid....always as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

GP should dose levothyroxine by weight...not by TSH

Thank you so much for this

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

Roughly how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

So I weigh around 48-49kg.

A few years ago I was started on 50 instead of 25 (GP admitted this was a mistake), but 50 was too high I think so they brought it down to 25 again, then increased to 75, then decreased to 50.

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

49 x 1.6 = 78.4

So likely to need roughly 80mcg levothyroxine per day

78.4 x 7 = 548.8 per week = 550mcg per week

75mcg per day 6 days a week and 100mcg one day week

Always get same brand of levothyroxine

Best to always avoid Teva unless lactose intolerant

If you have Hashimoto’s strictly gluten free diet often helps or is absolutely essential

Getting all four vitamins improved to optimal levels is essential

That frequently means needing to self supplement.

Is levothyroxine available to buy directly from the brands?

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

When you go to pharmacy request you always get which every brand you prefer

And always double check the bag before leaving the counter

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Small independent pharmacies are often more helpful

I think I need to change pharmacies then. They rarely have a variety of brands and sometimes they're out of stock. Sometimes they forget to request my prescription too.

Hi, I have graves disease and have just started my second lot of block and replace.I know I'm undermedicated at the moment and feeling really fed up.I have never suffered from depression but feel really low at the moment and anxious as well.Cannot cope with anything extra and just want to put my head in the sand.I know it will get better soon so I can keep plodding along.I have also experienced the highs and lows of being hyper, mood swings, anxiety, insomnia and mind racing.I think these things are just part and parcel of thyriod problems and get better when optimally medicated.There is alot of help on here so you are not alone.

Oh I really feel for you. I wish I could help but I guess the only thing I can say is you're not alone either, one day you'll have optimal levels and will feel much better.

Hello,Oh my goodness are you me? I've just read this and wondered if I've posted in my sleep.

I found out yesterday I've gone hyper again so they've altered my meds a bit. My moods have been awful, but I've blamed lockdown, menopause, my husband....

I have no advice other than speak to your doctor, take care of yourself and walk. I've got an endo appointment on Thursday so if I glean any relevant info, I'll let you know. (booked in September, was supposed to be NYE and they postponed till April, I managed to change it. That postponement did not go down well I tell you!).

Anyway take care, eat well, sleep well.

Thank you! My doctor will test me again in 3 months because I recently lowered my dose of levothyroxine. I currently have something off with my liver so they're waiting on those results. I might get a private test before then.

Do let me know how it goes, all the best!

SlowDragon
SlowDragonAdministrator in reply to thiredofthyroid

Liver likely sluggish on such low dose levothyroxine

just by say that if your doctor is dosing by TSH they are out of date you need free t4 and free t3 testing along with the vitamins and antibodies slow dragon has mentioned above it drives me mad when doctors dose by TSH and pay no attention to other things. my mum had low free t3 and they reduced her levo making it even lower. the advice from slow dragon and others above could be useful to you- testing, monitoring and reading around this forum too. get copies of all blood results with ranges and be your own best advocate

i did this when my GP refused to recognise my hashimotos. and helped my sister & dad too. my dad was on levo, in a mental health hospital, woefully low in vitamin D, donate etc and being dosed up on psychiatric meds. he was constantly getting eye infections and feeling crap all the time. the whole family now self test and supplement and hardly ever need to see a doctor.

as for female hormones well i feel the GPs often don’t consider their impact on the thyroid and wider system. look up dr louise newton she’s a menopause specialist

good luck x

Thank you. I will be getting a private test because the ones my doctor gives on the NHS don't include t3.

I'm interested in the impact of female hormones on thyroid too, thank you for the suggestion

I was diagnosed with hypo 25 years ago and have had various dosages of levothyroxine during that period of time. Although my levels are within range I am becoming more symptomatic. I, and I’m sure everyone with thyroid illness will tell you that firstly you are not acting or being selfish and secondly our thyroids determine our metabolic state so if it’s out of whack it affects us in so many ways. I find some doctors just look at our levels and not us as a whole to determine what dose of medication we should be on. If you have a good, caring GP who listens, have a chat with her/him about your feelings. Lastly if it wasn’t bad enough dealing with our whacky thyroids we’re dealing with Covid lockdown. This only amplified our emotions. Look after *you* during this time. Good luck.

Thank you so much for the reassurance. I think people who haven't heard of or dealt with thyroid before wouldn't understand the impact it has. I've finally got a decent GP after a few years who was willing to test my thyroid levels again.

Personal anecdote :

Low nutrients, particularly iron and ferritin, have a really bad effect on my moods. Other people may find that improving low B12 and/or folate and/or vitamin D helps them immensely - we are all individuals in which low nutrients affect us the most.

By improving your vitamins and minerals to an optimal level you will help yourself to improve lots of things, including your tolerance of Levo and your conversion of T4 to T3.

Thank you so much. I'm getting this trend that vitamins are just as important!

Try an Autoimmune protocol diet and possibly leave out nightshade vegetables for a few weeks if you can. Make healthy broths full of vitamins and nutrients too and if you can remove as much stress from your life as you can. Good luck

This might be a silly question, but what's a nightshade vegetable? Stress does play a role, being a student in my final year and trying to balance exams, assignments and part time work is getting exhausting, and that definitely impacts me.

White potatoes, tomatoes, aubergine to mention a few but google them fir the full list. I had a lot of inflammation in my body and giving these up means I don’t suffer anymore. Some of us with autoimmune also have given up eggs and dairy. I had an allergy test done and found out I was allergic to eggs and dairy. Since giving these up plus gluten my health has really improved. I had a stressful job and since giving that up my health is do much better. Try yoga too or anything calming that you enjoy. I know it sounds simple but is difficult to start any of the above but good and stress can make things much worse. Please make time for yourself as the stomach is the second brain. Without good gut health you won’t be able to absorbed vitamins etc that you need for health.

I had no idea how much of an impact food has. Now that I think about it, certain foods like milk make me feel worse after eating them!

send for a postal allergy testing kit but make sure it is IGE food testing for allergies or IGG for food intolerences. Good luck

You’ve had masses of good advice from others but to answer your questions.

Ooh yes to the moods! I could be really grumpy. I remember when we were out doing a spot of Christmas shopping just after I started treatment for Graves. We were waiting for a park and ride bus back to the car - the bus drew up - a bunch of older than I was (I’m no spring chicken) pensioners stood in front of us in the queue.

They made absolutely no move to get on the bus, the one in front of me was fiddling with his phone. Eventually I could stand it no longer and said to them in a loud voice ‘Are you going to get on the bus or are we all going to stand here and watch the driver close the doors and drive off? Well I mean the poor driver was working to a schedule - why should he wait for idiots?

Anyway, the old guy glared at me and they all headed onto the bus - the guy looked at me as we were showing our tickets and muttered about ‘Sone people just can’t wait or words to that effect’. Needless to say my husband was mortified. Did I care? Nope.

I became very hypo before I started the thyroxine part of the B&R and that was pretty awful. I’d say that I was pretty volatile until my treatment was established. Your body really doesn’t feel good if you are going from one extreme to the other.

Another time my husband decided it would be ok to offer our house for a pre Christmas event for neighbours and friends - he obviously didn’t quite grasp how bad I was feeling - well I exploded like a volcano and he promptly withdrew his offer of our house for the event. Even then it didn’t go well, he did the usual of going off for a beer with the guys and left me to my own devices with a load of people I didn’t particularly want to spend an evening with so I went home - and counted down how long it would take him to miss me. Too long I’m afraid. Yip I was pretty volatile back then - it does with being hyper.

I will say be very careful if your doctors suggest removing or ablation get your thyroid. You sound young and once your thyroid has gone you have a lifetime ahead of you. It’s one thing if they want to remove it because you have thyroid cancer or something like that but if it’s just because it makes life easier for your doctors then think twice.

Research is being done into Graves btf-thyroid.org/research-ne... and hopefully it will help people in the future but if your thyroid has been removed or wiped out with radioactive treatment then it will be too late. So think twice about any permanent solutions offered to you.

I hope you can get sorted out I found this article and it pretty much sums up how thyroid problems affect you.

tpauk.com/main/article/lett...

Oh gosh, see when I'm in public I let my anger build up and it comes out on my closest loved ones. I do feel guilty, but I'm usually calm and understanding.

I'm yet to find a lot of people who were diagnosed early on with thyroid. Balancing student life with work and health is getting tricky.

You’re right, I’ve never heard of anyone diagnosed early on - I’m sure I’d had it for a long time - I felt as if I had s9me sort of autoimmune condition - just didn’t think I was hyper - so I’d had visits to the doctor for vague things, one day a doctor told me that I ‘needed my holiday’. On that occasion I kept my rage to myself and went back to the car and my husband almost crying with rage because the way the doctor said it she clearly thought I was a total hypochondriac. Had the holiday - all the way to the south of France taking Dr Batch’s Rescue Remedy pastilles!!!

Three months later I nearly killed myself and a friend in the car. I saw a different and clearly better doctor next morning. Within three days I was taking carbimazole, had an appointment to go back for more blood tests in four weeks time and an appointment with a consultant. Think that’s par for the course.

It's sad, not every doctor cares enough. And this is something that impacts many other aspects of life! I'm going to try and take matters into my own hand and hopefully things get better.

Looking back, I was deffo hypo when I was 19-20; but not formerly diagnosed until I was 22. It was miserable (still is!)

Oh my :( I was probably 14 when symptoms started, 17 when first diagnosed and now in my early 20s I'm learning more about it after my levels messed up. I can only hope it gets better

it doesn’t sound like this poster has hyper or graves, simply that GP is being fixated on TSH

Part of me feels really silly and careless that I didn't know half of what I've learnt in the past 24 hours

Wouldn't worry about that - if you spend a lot of time on here you’ll realise a lot of doctors would do well to spend a few weeks study8ng what they learn on here.

Absolutely not your fault , perfectly reasonable to have assumed GP's know what they're dealing with....And not as 'careless' as me ....i got diagnosed in 2003.... i only started really researching and questioning in 2019. so by comparison you're really 'on it '

:)

Thank you, that's reassuring

People in general do not understand. Find an article on google with all symptoms of Thyroid disease and ask them to read it.

I think this might help. I feel like with things like diabetes, there's a lot more awareness of it. With thyroid conditions it's either not known about, or doctors say there's nothing that can be done aside from levothyroxine etc

After being hypo for a few years my blood results came back and I'm hyper (along with a potential liver condition, low folic acid and anaemia).

What makes you think you might have a liver problem? Were there specific results that worried you?

Yes, so my serum ALT level was high, which my doctor was worried about. Though he said we'll check it again in one month.

It's helpful that your ALT is being re-tested in a month.

labtestsonline.org.uk/tests...

The above link will give you some more info on the ALT test.

I don't know whether this will reassure you or not, but ALT is often reported as being high when people report Liver Function Test results on this forum. (It's often the high ALT that prompts them to report the results in the first place.)

My ALT went over the range a few years ago. I did some research and found that it could be caused by developing fatty liver which can happen when eating a diet that was too high in carbs and sugar. (It can also happen when people drink too much alcohol, but I don't drink.) That made sense to me because I had really let myself go in terms of diet for a few months. Amongst other things I had started eating a lot of ice cream.

I got a grip on things with my diet, and then re-tested 8 months later. My ALT had dropped to roughly mid-range.

I'm not saying what helped me will help everyone, but I'm just pointing out that having a high ALT isn't necessarily a sign of having a terrible disease, and it may be well within your power to fix.

Good luck. :)

Thank you! I think I got worried because when I researched the first results showed it could be something dangerous. My diet isn't the best (in the sense that I barely have an appetite so I don't eat much) so it could be diet related.

Thank you for this

Try reading Thyroid Healing by Anthony William from Hay House. This book changed my life and my thyroid has stabilised. I think good nutrition is one of the most important things.

Thank you, I'll have a read! I think my doctor emphasised that diet has no impact and I believed them without question - probably not a good idea

That’s what mine told me too. I have been over medicated many times and without the sound advice from this site would not be well now. It’s difficult to believe but I’m on way less medication by optimising vitamins, eating whole foods mainly plant based with good quality fish and meat in small amounts I can honestly say my energy, sleep and quality of life in the last 9 months is so much improved. If you get no joy with your GP use this site to find a sympathetic endocrinologist and possibly a recommended nutritionist . I had 3 sessions with one and now have found a plan for life.

I'm excited and nervous to start this journey. I saw one endocrinologist on the NHS who discharged me after one session saying I'm fine which probably planted a negative image of endocrinologists in my mind

I have a very negative view of endocrinologists too! I think lots of them are misogynists and I think that feeds into their view of thyroid disease - it mostly affects women so it isn't important and it must be easy to deal with.

" my doctor emphasised that diet has no impact "

Yes, mine did that too, he told me my immune system was attacking my own thyroid, i asked if i'd done this to myself by my pretty bad habit at the time of using sugar for energy rather than 'food', and had this pushed my body to burn out or something ?....

"No" he say's "what you eat has nothing to do with it" which may or may not be true regarding the cause, but.....

the fact that he didn't say anything at all about my admission of 'living on sugar rather than food', should have been a rather large red flag about the GP's lack of knowledge about how your nutrition IS your health.

I am having a chuckle as I am constantly surprised how often i would like to just slap GP's, there are very few jobs you get paid so much for knowing so little, while pretending to know so much!You need a deep breath, warm cup of something soothing and try and take the info in, you are going to start feeling a lot better. There is so much info, much of which may not be relevant. When you dont feel well its hard to take it all in.

We have all been where you are, found groups like this and found a way out the maze. Slow an steady will get you there. Keep asking questions, anything you dont understand, it will all fall into place xx sending you love xx

Thank you for the reassurance, it really helped me calm down!

If folate is low you will not be able to use the b12 that you do have.When my folate was low I started to become quite mentally unstable and depressed, which totally went after raising levels. The difference was amazing!

Best of luck

This is an interesting article:

ncbi.nlm.nih.gov/pmc/articl...

That's reassuring. I'm on 5mg folic acid daily so I'm hoping that helps! Thank you for the read

helvella
helvellaAdministrator in reply to thiredofthyroid

For most people, 5 milligrams of folic acid (or a folate) is excessive.

There have been several reports on the Pernicious Anaemia Society forum of significant adverse effects of taking that sort of dose long-term.

Once deficiency has been resolved, 200 to 400 micrograms a day should be sufficient for most of us.

Even in the article Thenightowl linked to, the patient was only given 1 milligram a day!

I definitely eventually want to move to organic sources of folate (I've seen green leafy vegetables are a good source)

helvella
helvellaAdministrator in reply to thiredofthyroid

There's even 29 micrograms in 100 grams of ordinary baked beans!

Really? Do you mean like Heinz beans? Because I eat them very very often

helvella
helvellaAdministrator in reply to thiredofthyroid

Yes - that is a typical value for ordinary baked beans in tins in the UK. 🥫

I have been experiencing the same issues. I had a good op last Friday and was told that I had a heart arrhythmia during the op! I'm told it's related to my the levels as mine was 39 on the day of the op!!I'm told it will take months to see an endocrinologist. Covid is affecting us all in different says but my mood swings are a problem for everyone around me. Thank goodness my daughter ignored me😁

Yep my doctor reckons my ectopic beats and pericardial effusion is because of thyroid issues. I'm glad I'm not the only one with mood swings!

humanbean
humanbean in reply to Laney58

Laney58

I'm not sure I've understood your post.

Is it your TSH which was 39? If it was then I do hope your GP isn't leaving you to rot while you wait for an appointment to see an endo.

humanbean
humanbean in reply to humanbean

Laney58

I should also point out that if you have hypothyroidism then there is usually no need to see an endo. It is a condition which is generally treated by GPs.

Laney58
Laney58 in reply to humanbean

The problem seems to be that I was Hyper about 25 years ago and them became Hypo about 15 years ago. Now I'm oscillating between the two.

Laney58
Laney58 in reply to humanbean

Yes my TSH was39!! Know waiting to hear back from my gp. I'm still not considered for an emergency appointment.

Hi and just to add regarding TEVA if it is the filler ( it was for me) make sure GP a and Pharmacy put it on record you are not to be issued that brand due to bad reaction.

I wasn't aware they could add this to my record, thank you

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