My experiences with thyroid issues : Hi everyone... - Thyroid UK

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My experiences with thyroid issues

Gettingbettersoon
Gettingbettersoon

Hi everyone, I have just joined today, I had a partial thyroidectomy over 30 years ago and still suffering. My levels go up and down all the time so I have to be monitored regularly. Was rushed to a&e on Friday with a very severe panic attack. Was very scary, I don’t really know why this happened, but now I have been told my thyroid is now very under active. I don’t know if anyone else has suffered panic attacks due to their thyroid or maybe there is some other reason it happened. Anyway if anyone would like to ask me any questions about things I have experienced with this condition I’m very happy to answer them.

44 Replies
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SlowDragon
SlowDragonAdministrator

Anxiety and panic attack type symptoms are common when under medicated or hypothyroid

Do you have your most recent blood test results and ranges for TSH, FT4, FT3 and vitamin D, folate, ferritin and B12

When on Levothyroxine TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Vitamin levels are often too low and may need regular supplements to maintain at optimal levels

So for full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

I really don’t know my results I should ask the doctor, trouble is I find it difficult to understand. I don’t understand about enough I should research it more, do you know if there are any books I can buy to help me understand it more? Thank you for telling me that it’s common to have a panic attack when the thyroid is very low that has made me feel better, my doctor says my thyroid is now very very low to what it was. Thanks once again I thought I was going crazy I was rushed to a&e Friday morning because the panic attack was so bad then I had another one in the evening. It’s so scary I thought I was going to die.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer 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.

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. They can no longer charge for printing out, rules changed after May 25th 2018

How much Levothyroxine are you now taking?

Was dose increased after visit to A&E

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also will need vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Members can advise. Best to put results and ranges on new post so more people see it

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Low vitamin levels are extremely common and very often need regular supplementing so that thyroid hormones can work well

Vitamin D, folate, B12 and ferritin need testing. Ask GP to do so if not been done recently

Yes I will get in touch with the receptionist today, I was on 75mcg for five days and 100mcg for two days, for years I was on 150mcg daily but it was decreased, now the doctor has put me on 100mcg daily, I take vitamin d every day so that’s ok, I don’t know if I have had antibodies tested, but when I get my results I will add them. Thank you so much I haven’t felt this happy for a long time you have eased my mind and I will go to doctors today.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

There has been an (incorrect) obsession for medics to reduce dose of Levothyroxine to bring TSH up into range. Often reducing dose far too much. Often didn't need reducing at all

It's extremely common on Levothyroxine to need suppressed TSH and high FT4 in order to have high enough FT3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many, other wise we need suppressed TSH and high FT4 in order to have high enough FT3. Especially after thyroidectomy

rcpe.ac.uk/sites/default/fi...

When on too low a dose of Levothyroxine then our vitamin levels often drop substantially.

Ask GP to test Folate, ferritin, B12 and if not been tested for some time, vitamin D too. It's extremely common for vitamin D supplement to be too low to improve levels. GP often only prescribes 800iu. Many of us need substantially higher dose than that

I’ve been to my doctor and ask for my thyroid level print out so I will get those tomorrow, I have been out and bought books to understand it more I don’t understand t4 and t3 and t s h I will start studying today thank you so much.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Link about thyroid blood tests at the home site of this forum.....Thyroid UK

thyroiduk.org/tuk/testing/t...

Thank you for sending me that link that is so helpful.

Hi slowdragon, I now have my thyroid levels which were taken on Friday,

Free T4 11.4

Free T3. 2.8

TSH 67

I printed out the link you gave me for these ranges but I still don’t understand it lol, I would be really grateful if you would explain. Thank you.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Do you have the figures in brackets after each result? These are the ranges specific to your tests. Each lab has slightly different ranges.

Obviously even without these ranges it's clear to see your TSH is very high. It should be under 2.

FT4 should be near top of the range. Typically range is 12-22

FT3 should be half way in range. Typically range is 3-6.50

Have you recently had change in brand of Levothyroxine?

For example many many patients do not get along with Teva brand..

We should always try hard to stay on the same brand of Levothyroxine.

Many people find Levothyroxine brands are not interchangeable. 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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

You will likely need further increase in dose. But we have to increase slowly. 25mcg dose increase maximum at any one time. Retesting bloods 6-8 weeks after each dose increase

The other numbers I have are

Free T4. 9-24

Free T3. 3.5 -6.5

TSH. 0.35 - 5

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

So your TSH should be between 0.35 -5. Your result was 67. This shows you are extremely under medicated and very hypothyroid

Most patients on Levothyroxine need TSH around one, or just under.

FT3 should be between 3.5 -6.5. Your result was 2.8, i.e. Very low because you were not on high enough dose of Levothyroxine. Most patients on Levothyroxine need FT3 at least 5 or 5.5 as minimum

FT4 should be between 9-24. Your result was within range at 11, but on Levothyroxine we need dose high enough for FT4 to be towards top of range eg 20-22

As you have been very hypothyroid you may also have low vitamin D, folate, ferritin and B12. Ask GP to test these. If they are too low, we often need to supplement to improve. Low vitamin levels prevent thyroid hormones working well

So it can become viscous circle. Vitamins are too low, so thyroid hormones don't work, so vitamins drop further. We very often need to supplement vitamins regularly to keep them high. But you must test first. Ask GP to do so, or test privately if necessary

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

What brand of Levothyroxine are you currently taking? Has it changed recently?

I’m not sure what brand it is, it just says levothroxine. Could it be almus or actavis? I’m sorry to sound so thick lol. I take vitamin d every day and the doctor said it was very good but I don’t know my vitaminb12 . I will ask the doctor and about folate and ferritin. I have been on this brand of thyroxine for a long time. Thank you for getting back to me like this I really appreciate it.

helvella
helvellaAdministrator
in reply to Gettingbettersoon

Does it not come in a card outer packet with a blister pack inside?

Anyway, all you need to do is look at the tablets and post the markings you see - look at both sides.

One side has tc the other side is just c

helvella
helvellaAdministrator
in reply to Gettingbettersoon

TC and C is Actavis 100 microgram tablet. Might have been packaged as Actavis, Almus or Northstar.

Next time, indeed every time you get any prescription dispensed, ask for the Patient Information Leaflet. It is required that a) they give one if requested; b) it must be the exact product dispensed; c) you need it every time in case it has been updated.

Are they not the proper brand names then

helvella
helvellaAdministrator
in reply to Gettingbettersoon

Not quite sure I fully understand your question.

Actavis makes levothyroxine tablets and packs them in blister packs.

Some of these are put in card outers labelled "Actavis", as you might expect.

Some are put in card outers saying "Almus" - a Walgreen Boots Alliance company - and dispensed largely through Boots.

Some are put in card outers labelled "Northstar" - a Celesio company - and dispensed largely through Lloyds.

All exactly the same tablets. All card outers do actually say "Actavis" as Product Licence holder - on the bottom edge.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Ok so if not changed brand then it's not a different brand that has caused spike in TSH

Well I was on 150mcg for years now the doctors have decided to keep cutting it down

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Which has caused your current problems

It's completely inadequate for GP to reduce dose to bring TSH up into range. Many, many patients have/need completely suppressed TSH (i.e. Very very low, virtually zero). As long as FT4 and FT3 are within in range, towards top of range then dose is correct.

These are my results done in May:

Serum free T4 level 13.3. 9.00-24.00

TSH. 15.9. 0.35- 5.00

T3 isn’t on this result.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Well you were extremely hypothyroid back then. TSH was 15.

GP should have called you in immediately. They should apologise

TSH should be around one and FT4 towards top of range on Levothyroxine

Oh my god isn’t that awful, that doctor has left now thank god. This time I saw the doctor that is the head of the practice, he asked me if I had been taking the thyroxine he must think I’m stupid.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

It's a common response from GP. ....blame the patient

They have reduced your Levothyroxine too much and not monitored you properly

I’m really shocked by that, you put your trust in your doctor and that happens, I’m so grateful to you telling me this no wonder I have been so ill. I have bought two books to help me understand it more and I will start looking after myself, I’ve always relied on the doctor to do that but now I know I can’t. Thanks so much.

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

You very likely need your original dose of 150mcg or nearly that

But will need to increase slowly in 25mcg steps. Full Thyroid and vitamin testing privately 6-8 weeks after each dose increase

Most important to test FT3 and FT4. Just testing TSH is completely inadequate

Always stick to same brand of Levothyroxine too

Yes I thought that I was ok on that dose for years, I Will privately test as you suggest. Can you tell me one other thing? I had been on a diet and I lost 2 1/2 stone, would that have affected my thyroid?

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Possibly. Again a good reason to do full Thyroid and vitamin testing.

Hi slowdragon can you tell me if there is a link between thyroid and bipolar

SlowDragon
SlowDragonAdministrator
in reply to Gettingbettersoon

Yes

Link to other posts

healthunlocked.com/search/b...

I have been feeling really good these last couple of days which I find very surprising. How low my thyroid is I should feel tired and unwell, yet I feel so good I’ve haven’t felt this good for years. I feel so confident with my driving which I haven’t for a long time. I’ve not wanted to go outside the door but now I feel energised and so happy and want to do things I haven’t done for a long time. I find this so strange, I should be struggling to get out of bed according to my thyroid results. My sister was wondering if I could be bipolar so I’m afraid I might come crashing down soon. Do you have any thoughts on this I would be so grateful for your advice.

I don't think you need to suffer so much. Something is not right about your treatment.

I also had a partial thyroidectomy and due to useless advice and aftercare from GPs I suffered years of ill health. With help from this forum and now from a good GP, I've recovered but not without a legacy.

I really would encourage you to get to the bottom of your ill health as the aim of taking Levothyroxine is to be symptom free.

The trouble is a lot of doctors don’t know what they are talking about, it took my doctor five years to even find out I had an over active thyroid, I was never tested for it depite shaking violently and losing weight and very bad anxiety, and thirty years later still not right, awful isn’t it. Thank you for replying to me take care.

I hope with help from this forum you will get better than you've ever been.

Yes thank you I feel so much better already, after my episode in a&e on Friday I now know I’m not going mad lol.

That's good you feel reassured. I ended up in A&E after over medication due to faulty thyroid tablets.

In the UK, thyroid meds were not bioequivalent and there were issues until after a review in 2013. Even now it is recommended to stay on only one brand ( type) of Levothyroxine as the way you absorb them may vary. It may explain why you were on larger doses in the past.

Manufacturers have reformulated Levothyroxine to comply with new regulations since the MHRA Review in 2013. Keep copies of all blood test results and lab ranges and don't rely on doctors to manage your thyroid condition. They know very little in the main and tend to think of it as a minor condition without considering the impact on a patients life.

Yes I feel much more assured now so glad I found this site. My doctor did tell me that I am very ill though and I will get better. I thought I had gone insane, I was confused and I fought with the paramedics and my husband, I thought that was it I was dying and I wouldn’t believe them, now I have been reassured that this was caused by my levels getting so low I’m very happy now it just takes someone just to say you’re not going mad you’re going to get better. Thank you.

Kinzasyed
Kinzasyed
in reply to Nanaedake

Hi there,

I am going in to have partial thyroidectomy soon.

I am pretty nervous tbh don’t know what’s coming.

And since youve mentioned your suffering due to wrong aftercare etc.. what do you suggest can be done differently to stay on top of this?

Your guidance will be very helpful.

Thanks

There’s no need to be nervous, you will be fine it’s so much different now to when mine was done, you must make sure you have regular blood tests and always make sure you take the right amount of thyroxine your doctor prescribes don’t mess about with the dosage, I did that cos I thought I wasn’t taking enough and I’m so sorry I did. I’m on vitamin d every day which is important, get as much info as you can to understand it, I still don’t fully understand lol, I’m going to get books to study it because I should have more knowledge after all the years I have had it lol. Make sure you look after yourself take care and good luck for your op, as long as you get a lot of info you will be fine they help you so much on here. I’m so grateful to them.

Nanaedake
Nanaedake
in reply to Kinzasyed

Please get a blood test for vitamin D level done before your thyroidectomy. Research has shown recovery is quicker if you have good vitamin D levels but the NHS has not caught up with this. Vitamin D is best mid lab range. In UK that's around 100nmol.

Always keep a copy of all blood test results with lab ranges. Carry copies with you to appointments.

Post results on this forum for good advice from administrators and experienced people.

It is normal to feel very tired for a few months after thyroidectomy and can take a few months to get onto right dose of Levothyroxine. I would also discuss T3 with your consultant. I would no longer be happy about submitting to TT unless consultant agreed to replacing both thyroid hormones afterwards. This may not be considered an option in your location and you may have to fight for it.

SlowDragon
SlowDragonAdministrator
in reply to Kinzasyed

You will need replacement thyroid hormones. Usually just Levothyroxine, but about 20% of thyroid patients also need small dose of T3 added

We usually start on Levothyroxine only.

Essential to make sure vitamins are optimal too. Many of us need to supplement regularly to maintain levels. But always testing first before starting any supplements

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. 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. Best to avoid Teva brand unless lactose intolerant

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, (and if eventually on T3 don't take in 12 hours prior to test), delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Hi Gettingbetteroon. You’ve come to the right place for help the people on this site are amazing! They definitely know a thing or too about thyroid problems and medication.

Like you I’m extremely grateful I found this site. Good luck on your recovery. 💐💐

Yes I feel so much happier thank you and good luck to you too.

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