Heartburn

[Baggiesfan]

Hi, I hope someone can advise please? I take 100mcg eltroxin, hypothyroid following RAI for Hyper/Graves. I've been struggling with heartburn for a while now. Was originally put on pantoprazole by g.p. then slowly weaned myself off as I was concerned about being on it for years, doctors don't seem concerned at all. I been taking apple cider vinegar for about 2 weeks after doing the test with bicarbonate of soda, no burp at all. Still having heartburn and on 2 occasions had to take pantoprazole, which helped but I'd rather not take it. My question is how long should I take acv before I get no heartburn or am I just unlucky. Many thanks for reading.

[Baggiesfan]

Thank you Jonathan, I'm hypo now since rai. I did try probiotics but not for a while, I'll persevere and maybe try sauerkraut too, I wasn't sure how long it would take to settle, hope you both continue to stay well

[pennyannie]

Hello Baggiesfan ;

It is essential that you are dosed on your T3 and T4 blood test results and not on a TSH reading, which is likely all that you are getting in primary care at the yearly thyroid function test.

You have had RAI thyroid ablation and your feedback loop broken and a TSH reading looked at in isolation has no value. RAI is a slow burn, destroying your thyroid in situ over a period of time.

The TSH was originally introduced as a diagnostic tool to help identify a case of hypothyroidism and was never intended to be used, in isolation, once a patient was on any form of thyroid hormone replacement.

Ideally your T3 and T4 should be balanced within ranges at roughly around a 1/4 ratio of T3 to T4 and we generally feel at our best when our T4 is heading towards, or in, the top quadrant of it's range, as this should, in theory give a higher T3 :

T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person needing to convert / need / utilise / find around 50 T3 daily, just to function.

Your own ability to convert the T4 into T3 can be compromised by low vitamins and minerals, especially, ferritin, folate, B12 ad vitamin D, inflammation, dieting, depression, any physiological stress (emotional or physical ) chronic pain and ageing.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 said to be at around 10 mcg plus a measure of T4 said to be at about 100 mcg :

So by not replacing like with like, with synthetic T3 and T4, or Natural Desiccated Thyroid, you have in effect been down regulated by around 20 % of your overhealth and wellbeing.

The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 only, some people find that T4 seems to stop working for them at some point in time and need the addition of a little T3 to restore T3/T4 balance, some people can't tolerate T4 at all, and need to take T3 only, whilst others find NDT suits them better as it contains all the same known hormones as that of the human gland.

20 odd years ago, all these thyroid hormone treatment options were available on the NHS - currently you may well find you can only access T4 - Levothyroxine and anti depressants plus a multitude of other prescription medicines for presumable other issues that you maybe told you now have to deal with.

I too had RAI for Graves back in 2005 and became very unwell around 8 years later but found no help with my ever decreasing circle of wellness through the NHS system and am managing lingering Graves, thyroid eye disease - caused by the RAI, and hypothyroidism.

I now self medicate and have my life back, and suggest you read up all you can, and take back some control for yourself although totally understand how the insidiousness nature of hypothyroidism can feel like you are loosing pieces of yourself, like being " rubbed out " :

You might like to dip into Elaine Moore's Graves Disease Foundation website as she too went through RAI and finding no help with her continued ill health started researching this poorly understood and badly treated autoimmune disease herself.

I also found the Thyroid UK an excellant source of all things thyroid related and another couple of books, apart from Elaine's first book, are ;

Your Thyroid and How To Keep It Healthy - written by a doctor, Barry Durrant - Peatfield who has hypothyroidism - and whilst we haven't this amazing little gland we do need to know what we can do to compensate for it's loss :

Breaking the TSH rule - From Hyper, to Hypo, to Healing by Barbra S Lougheed another lady with Graves and who went through RAI - I think she now runs a blog as Thyroid Mum ???

It's a massive learning curve, but you can make changes for yourself and you have the support of this forum which is where we all start off improving our health and wellbeing.

P.S. I didn't burp either - and still do use Apple Cider vinegar as I don't see my hypothyroidism fully resolved and now need to maintain all that I have done to get me this far and well and back to being " me " :

[Baggiesfan in reply to pennyannie]

Thank you so very much for your informative reply and sharing your journey, I read it with tears in my eyes. I fit many of the points you raised. I'm 64, rai thyroid ablation about 11 years ago and began to feel unwell again 3 years ago and yes I've done the counsellor, antidepressant route as I was losing it, not on them now. I did private bloods with medicheck for the 1st time in May, vit d low (47) so started supplements and feel a little better there. Ferritin was raised (260), I do have chronic back/hip pain which surgery unfortunately hasn't helped. Tsh was 1.26, free t3, 3.8 and free thyroxin 18.3, all in range though t3 lower end. My gp was unimpressed as expected, but agreed to another blood check mid August, prob tsh only as NHS. I have joined Thyroid UK and seek information there but I am too scared to self medicate as yet despite being a retired nurse prescriber, I've lost all confidence in myself lately and just seem to be spiraling from one ailment to another with no resolve for any.I will definitely do more reading to educate myself and probably referral to private consultant who may prescribe t3 if he thinks it mat help. There has to be a better life ahead for us.

Again many thanks for replying.

[pennyannie in reply to Baggiesfan]

Hey there :

I totally get it, don't worry, I am not suggesting you start self medicating :

I waited over 4+ years, first expecting the NHS to help me but 2 + years further on after numerous outpatient appointments, I was discharged with " just " a low ferritin and referred to as a conundrum by my doctor and offered anti depressants.

Sofa bound, I looked up the implications of low ferritin and started supplementing the vitamins and minerals for myself and thank goodnes found this amazing forum and started reading the questions and answers offered by forum members.

Having been refused both NDT and T3 by the NHS in 2018 I had no option left but to do it for myself, when I felt ready and had read up enough to have a little bit of confidence and in all honesty I had nothing much else to loose and actually found it liberating.

The brain needs an awful lot of T3 to function and it can be crippling -

I'm dyslexic and think this hit me very hard as I would write , like doing lines at school, what I needed to say to my doctor, and took this script with me so I didn't loose the words. However to get to a script I would have used about 30 sheets of lined paper and recited everything over and over again , out loud, hoping for it to stick in my memory.

You will feel better once your vitamins and minerals are optimal:

The ferritin is high and hope the reasons why has been explored and known to be down to inflammation and the back pain, both of which will be cause a lower level of T3 as this hormone has been been rerouted to mend where you have had surgery.

Thyroid UK hold a list of recommended endos, doctors and specialists, both NHS and private, and a referral to someone on this list a better option than any that your doctor may suggest. This recommended list is made up from forum members recommendations who found help with being offered more than just T4 thyroid hormone replacement and some who are private seem to transfer patients across to their NHS list after the initial consultation.

You can also research and ask forum members for recommendations by area, but that will be by private message only, and the facility to do this is within the screen, so no worries, it will all fall into place as currently I think you are with information overload.

Read up other people's posts and you will see a pattern emerge and like a jigsaw puzzle, things will start to fall into place once you have found some corners pieces to build on.

Currently we have the added problem of T3 being withheld by certain CCGs throughout the country - if you can afford to start off going private, this might be the best option, just depends where you live and your abilty to travel as it 's become a bit of a post code lottery.

Yes, looking at your T3 / T4 conversion when on T4 - Levothyroxine only - if we divide your T4 by your T3 - I'm getting 4.80 :

The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 T3 /T4 with most people feeling at their best when they come in at 4 or under: so your conversion is compromised, but I've seen worse, I 've had worse, and it can improve with optimal core strength vitamins and minerals.

If the range for T4 was 12-22 there is also room for an increse in Levothyroxine as at 18.30 you are just around 63% through the range with a T3 at just 19% and we generally feel at our best when our T4 is in the top quadrant at over 75 % through as this should in theoory give us a higher T3.

When I was on T4 only if I ran my T4 slightly over range, I did achieve a better level of T3 but it wasn't sustainable, and fell away again, and because this meant my TSH became suppressed my T4 was cut back.

I did try taking T4 over range myself, before I self medicated the other optionsT3 and NDT - but all I got was a horrible headache - but I thought I owed it to myself try all options before I knew what would suit me best.

[Baggiesfan in reply to pennyannie]

Thank you yet again, I feel a little more hopeful now, I have been reading more but somehow I'm struggling to retain it despite being a qualified nurse for almost 40 years. I did get a private message from another member re a private consultant on thyroid uk list a while ago and got the courage to call this afternoon, unfortunately I got an answer phone but did leave a message. I've also got a telephone appointment tomorrow a.m. with a gp re another issue so I will ask to be referred to the consultant as is required. I'm more than happy to travel and thankfully can afford a little to hopefully get some improvement. My ccg is quite poor with t3 but hopefully if the consultant thinks it may help, fingers crossed I can try. I am so glad I'm in this group as it certainly explains a lot of why I've been feeling so rough and anxious for a couple of years now. Well done for being confident enough to change your medication, I feel that's what I'll have to do eventually the more I read. Thanks again for you information and support x

[pennyannie in reply to Baggiesfan]

Good morning ;

I have to say, I don't think it's a question of " if you need T3 " as that fact is you have lost your own thyroid and all that it supported you with, and you need full spectrum thyroid hormone replacement.

However it is just as important to see a endocrinologist who will have the strength of character and medical conviction to prescibe and know and want to help you.

CCG's seem to be able to be able to overrule medical thoroughness and those words " first do harm " lost in the wobblygook and politics of the medical world.

Obviously if you go private it's a different situation but best to go to someone who has been recommended as you are done trying to be understood and need someone in your corner.

Yes, I think as you keep reading, you'll see it's not just you, but a massive problem that sadly effects mostly women, and why we are all here, supporting and helping each other, work through the jargon and find better thyroid health for ourselves.

P.S. Retention of information is a " given " when dealing with symptoms of hypothyroidism - it's part of the same and nothing else to worry about.

[Baggiesfan in reply to pennyannie]

Thank you, as a retired practice nurse I would often despair at some of the doctors decisions and often had to stand up for my patients. I think they forgot their oath and it just transferred to pounds in their pockets. One of the reasons I retired a little early as money is all many doctors care about.Gp said she'll refer me today, as I've written to SlowDragon so at last I feel a bit more hopeful that I can feel better.

After reading and trying to learn more I really can't understand why when I have no thyroid now, the doctors cannot understand that I may need a little more than just Eltroxin, at least let me try.

Thanks again for reading and supporting me.

[SlowDragon Administrator in reply to Baggiesfan]

Ft4 is 63% through range

But Ft3 is only 19% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

So very poor conversion of Ft4 to ft3

Most people when adequately treated will have Ft3 at least 50% through range

Do you always get same brand levothyroxine at each prescription

Which brand

Suggest you retest TSH, Ft4 and Ft3 BEFORE seeing thyroid specialist

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Like many people after RAI you are going to need addition of small doses of T3 prescribed alongside levothyroxine

[Baggiesfan in reply to SlowDragon]

Thank you Slow Dragon, I'm so grateful of your support. Your figures give me a reason for not feeling "me" for the last few years. I take Eltroxin and always get the same brand now (often have to wait for it so order week before I need it) following a consultation by endocrinologist a few years ago when I was unwell yet again, this helped stabilise me for a while. Why is everything such a battle though?My Gp this morning has agreed to refer me to the consultant you suggested, though when I mentioned T3 she said it's not funded by NHS at all, I just replied I'm happy to pay if it means I'll feel better, got the feeling she does not agree with it at all like the rest of them at my practice.

I was going to ask if I needed a more recent blood test, gp will only test Tsh when I asked this morning so I'll arrange private again when I get appt. I really hope the consultant will let me try a little T3, I just feel it's what I need. Scan on my neck last week, paid private, said there's no thyroid there at all anymore. When will the gp's wake up?

Thanks again for all support.

[SlowDragon Administrator in reply to Baggiesfan]

That’s rubbish about NHS not funding T3

Every since GP’s became in charge of their own budget that started watching what they will and won’t pay for

If in England you can search prescription numbers for liothyronine by CCG area here

Some CCG are worse than others

openprescribing.net/analyse...

Typically dose T3 prescribed is 3 x 5mcg doses per day

Prescription is for 20mcg tablets and have to cut into 1/4’s (yes it’s fiddly)

Cost for 20mcg tablets much cheaper than 5mcg

20mcg T3 on private prescription is £1 per tablet. EU Thybon Henning 20mcg tablets

So 3 x 5mcg is 75p per day

(Pre Brexit cost was 30 euro for 100 tablets)

20mcg T3 price charged to NHS is currently £101 for 28 tablets (down from £268 when was only single supplier a few years ago)

I would strongly recommend getting full thyroid testing done BEFORE booking any consultation

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Private consultation, date available is usually pretty quick

Email short Summary of your thyroid journey

Plus most recent thyroid and vitamin results and ideally a spreadsheet of thyroid and vitamin results over time

[Baggiesfan in reply to SlowDragon]

Ok thanks, typical gp's trying not to fund medication yet they waste plenty in other areas. I'm in Shropshire. I tried to speak to his secretary again today but still saying out of office, maybe she's on holiday.

I've only got my last results from Medicheck except for the basic tsh I can get from my doctor tomorrow, I did ask last week but as usual they've not done it yet. Never had vit levels before so will need to get those done again too. I'm no good at spread sheets but can write them down. Fingers crossed this is the start of my journey to feeling better xMany thanks again Sue

[SlowDragon Administrator in reply to Baggiesfan]

Yes, likely on holiday at moment

Starting on T3 prescribed privately

Assuming trial goes well on initial private trial T3 might eventually get transferred to NHS

Shropshire CCG prescription number

openprescribing.net/analyse...

McPammy may be able to help with local Shropshire NHS options

[Baggiesfan in reply to SlowDragon]

Brilliant thank you so much for your reply, let's hope all goes well, I really hope so xxx

[Baggiesfan in reply to Baggiesfan]

Wow, just read McPammy, how wonderful for her, I do hope I have such good news to report, I'm 64 so there may be hope for me yet x

[Baggiesfan in reply to SlowDragon]

Me again, can you just confirm what bloods I need to be ordering please? I really need to get this right x

[Batty1]

If the pantoprazole helps you should take until you start feeling better and then slowly wean off and I find with having hypothyroidism (Im thyroid-less) that we digest much slower or at least I do which can definitely cause me horrendous heartburn.

[Baggiesfan]

Thanks Batty1, thanks for your reply, I'm sorry to hear you suffer too. I've been on pantoprazole for many years and have weaned off a couple of times but it always returns. I thought I'd try acv after reading that as I'm hypo I could have low not high stomach acid so it may help me. I'm not keen on ppi as I feel suppressing the acid will not help if it's already low but I have to agree that it certainly does help when heartburn is really bad.

[Batty1 in reply to Baggiesfan]

Its a double edged Sword, take PPI and have issue not take PPI and have issues … I guess you will need to figure out which side of the sword works better for you.