Terrified!: Hello , I’m new here... I’m not sure... - Thyroid UK

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Terrified!

ZippyAppletush
ZippyAppletush

Hello

, I’m new here...

I’m not sure if I’m on the right page to post this but I am a 56 y/o woman in UK with congenital hypothyroidism, diagnosed at 6 months, and enjoyed a level of care throughout life (with the odd fall signalling a meds increase) and moving from Eltroxin to Levothyroxine at some point but with no marked deterioration in quality of life.

Settled out at 250mcg dose for best part of 20ish years and tootled along quite happily. In 2009 my hospital doctor retired and no-one replaced him so I was obliged to go on NHS thyroid register at nearest town Infirmary. I expressed my fear that meds would be reduced based on bloods and not on personal health. Worst fears were confirmed and over next four years meds reduced consistently until I was on 150 mcg and suffered debilitating fall on concrete driveway.

I had felt pressured by GP to keep with the consultant (a man I never even met!) and I decided that if I were to have a fall I could at least show proof the lowered meds weren’t working. (Photos of the subsequent damage are available to show my point.) After the fall I suffered bruising to my right side face, arm, ankles with subsequent tearing of ankle ligaments on r/side showing on MRI after 3 weeks. I wrote to consultant and GP with no joy so I decided then to find help as I was overseas and I gradually returned to 250mcg in 25mcg increments over six month intervals. As of early 2017 I felt happy and healthy again despite the lingering ankle issues, but my overall well being was palpable!

As my hubby retired and we returned to UK I had to rejoin the medical Merry Go Round to get my prescriptions, and sadly the new doctor at the same Infirmary is starting to reduce my meds already! I agreed to go to 225mcg but am feeling pressured to lower to 200mcg, and afraid, and I want to know why it is so wrong to be on 250mcg if that dose has proven to work for me. Am I so wrong???

The doctor explained about bone loss and heart issues, but I am more likely to fall and break bones in a lethargic and uncoordinated state, and my heart seems just fine.

Consistent admin delays are proving to be stressful, leaving me sure that I want to return once more to the dose that gives me peace of mind and good health. All I feel now is stressed and frustrated. I had a bone scan and an ECG in January this year but the h-art results were not available on screen or in print by my last appointment in June! The bone scan showed that I have pre-osteoporosis but that doesn’t worry me to much in connection with the continued 250mcg dose as I have a greater fear of falling again through lowered dosage than I do of developing osteoporosis in full but being of sound enough mind to watch what I’m doing! A previous ECG showed no issues to raise concern about treatment.

GPs at the local practice and the current consultant have all mentioned depression…I am NOT depressed…I’M FRUSTRATED!!!

Having read other posts on HealthUnlocked I will add the last two blood results I have received, both at 250mcg as due to admin delays I had not received a revised dosage notification and the GP would not change the dose without confirmation. (I am also hoping by to obtain blood results from 2009 when still in care of past doctor for comparison.)

I have in the past also had 4 pregnancies of which one went to 8 months and required an elective c-section due to Hydroceohalus in foetus. Two were miscarriages, and the last was a tubal abortion. When asked if my hypothyroidism was an issue I was told no. As my daughter’s primary carer 24/7 (due to other health issues) this is another reason I need to be functioning.

As I started the 225mcg reduction on 1st April I am already feeling symptoms such as hoarse voice, swallowing issues, laryngospasms, balance issues, and loss of concentration…pranged my car this morning!!! There are other things I’ve probably forgotten to mention but I hope what I have written gives some idea of how terrified I am to be at the edge of the proverbial black hole again.

With regard to the blood tests, I am still waiting for the results of bloods taken on 11 June. This appears to be the norm for the local area! In the meantime…

27/11/17 @ 250mcg – TSH <0.01mU/L and FT4 28.9 pmol/L

15/03/18 @ 250mcg – TSH <0.01mU/L and FT4 27.6 pmol/L

The reports received for both dates stated that other bloods and renal functions were all normal, but give no readings. My last health check showed normal for diabetes and cholesterol. The consultant was supposed to advise on VitD and calcium but still waiting on that!

Sorry for rambling more than I planned but any and all replies will be welcome, thank you.

32 Replies
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SeasideSusie
SeasideSusieAdministrator

ZippyAppletush

Whereabouts in the UK are you?

Do you have the reference ranges for your results?

Your TSH is OK but we need to know if your FT4 is over range, which it looks very much as though it is, but by how much. You also need FT3 testing. It's quite possible that you aren't converting T4 to T3 and that you have a high FT4 and low FT3. They should be in balance in the upper part of their ranges when on levothyroxine.

T4 is a storage hormone which has to convert to T3 which is the active hormone that every cell in our bodies need. If you aren't converting well enough and your FT3 is low then that will be causing symptoms.

You may need an over range FT4 to get a decent level of FT3, but it would be much better to change your medication to Levo plus T3 so that both FT4 and FT3 can be where they need to be within their ranges for you to feel well.

Dr Toft, leading endocrinologist and past president of the British Thyroid Association has recently pubished a paper where he says that some patients require the addition of T3 to Levo

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

Hi SeasideSusie and thank you for your reply.

I’m near Doncaster, South Yorkshire.

I’m not sure what I would be looking for as reference range; the figures I printed are those that are in the letters I received. Can I ask my GP and/or the consultant?

No-one has mentioned FT3 at any time, even the most recent consultant. He just seems determined to lower my meds and given past experience it’s not a good place to be.

I had wondered whether because I have been on medication from a very early age that I had built resistance and therefore required the higher dose.

I did read that pre-blood tests, the range for medication was 200-400mcg and on that basis I was doing great as I was nearer the lower level.

I will read the article, thanks.

SeasideSusie
SeasideSusieAdministrator
in reply to ZippyAppletush

Zippy

The results with ranges should look something like

(made up results here)

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

Often they're not put in letters from consultants but if you had a print out from your surgery of any results done there the reference ranges would be included, maybe at the side of the result.

Ranges differ from lab to lab so you need the ranges from the lab your tests were done. I tried looking on line but could only find ranges for Leeds and Bradford Department of Chemical Pathology & Immunology which are

TSH 0.2 - 4.0 miu/L

free T4 10 - 20 pmol/L

but of course I don't know if that department carried out your tests.

You can certainly ask your GP or ring the hospital and ask for the reference ranges because then you will know why they want to reduce your dose of Levo.

FT3 is rarely mentioned, for some reason doctors don't attach much, if any, importance to it. They are so poorly educated in the workings of the thyroid. I expect your endo is a diabetes specialist, most of them are, and know little about the thyroid.

They also don't want to prescribe T3, and are being restricted from doing so at the moment, because it is expensive.

As mentioned, T4 converts to T3, conversion takes place in various parts of the body, one of which is the thyroid. With congenital hypothyroidism then your gland was either missing or has some kind of defect which means that it wont do the conversion and so you're relying on T3 being made in the liver, gut, skeletal muscle and brain, and you may not be making enough.

If I were you I would do a private test to include a full thyroid panel and important vitamins and minerals that need to be optimal for thyroid hormone to work. You wont get them all done by the NHS so if you can manage £79 before the end of the month, I would invest in this test by one of our recommended labs (the price reverts to £99 afterwards)

medichecks.com/thyroid-func...

You can do it by fingerprick or by venous blood draw at extra cost.

Then post your results on here and members will comment. I expect there will be a lot revealed that hasn't been mentioned to you.

SeasideSusie, thanks for the information given. I’m going to opt for the test you have linked to. At least I will have something to show the consultant too. I will post when I receive results.

I’m checking if I have any reference info on a GP report I got recently. If so, I’ll post.

I attend Doncaster Royal Infirmary. Both the past consultant and the current are primarily Diabetes oriented. With the past consultant I just felt he was putting his signature to a page; no interest in patients! The current consultant seemed more interested, but still fixated on blood tests.

I’ve looked at the blood request form for 15/03 and it requested FT3 but no mention of outcome in the letter.

The request for 11/06 had FT4, TSH, Cortisol, HbAic and coeliac screen. Still waiting on results from that test. No FT3 requested.

My next test for DRI is on 25/08. The request is for FT4, TSH, VitD, PTH and HbAic. No FT3.

I know there is a lot going on at present about FT3.

I’ll keep you posted and thanks again!

SlowDragon
SlowDragonAdministrator

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 or vitamins

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)

Is this how you do your tests?

There's a current ridiculous obsession with lowering dose to bring TSH up to within range. For many people that means FT3 is then too low, but as NHS refuses in the main to even test FT3 (costs them 92p) most patients just become ill.....often then labelled CFS, depression etc etc

First step is to get FULL TESTING. Almost certainly will need to do that privately. Come back with new post for advice once you have full results

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

Also request list of recommended thyroid specialists. You may need one, to over rule misguided GP

SlowDragon, thank you for your reply. I’m going to do the private test; hopefully something I can show the consultant. The current admin delays are anything from 6-12 weeks! Too long when you’re feeling so ‘lost’!

I see the consultant has asked for FT3 on test but neither reported result nor asked for it on subsequent tests. Hit and miss! Also has VitD listed but not until late August! I’ve been spoilt overseas where results are in your hand with an hour!

I’ll request the list of recommended specialists, thank you. I read the article by Dr Toft. I’ll certainly be showing that to the consultant too.

I’ll keep you posted!

Hi SlowDragon, sorry I overlooked something in your comments...in the past I have gone early and had meds with me to take after testing. In the past few years I changed to taking meds at night so I guess have had the meds in my system when I've had the test. Not sure how much this would have skewed results. I will leave my meds for the night before on this occasion and see what happens!

SlowDragon
SlowDragonAdministrator
in reply to ZippyAppletush

Yes I also take Levo (and 10mcg T3) at bedtime and normally 10mcg T3 on waking too.

On morning of test I would have only taken 10mcg T3 about 9pm night before, but delayed taking bedtime Levo and waking dose of T3, until after test

Levo is then actually 36 hours gap (should be 24 hour), but I mentally adjust results to compensate

I've sent off for the test this evening so hopefully will be able to get things done next week.

I've been feeling stressed over this situation for the last six months, along with other family issues, and had one day where it felt that it hurt to breathe with pain in the top of my back, and my temperature was over 38deg. The next day all was normal again. I put it down to all the things going on.

After all the trouble up to 2014 and then deciding to seek help elsewhere I had finally started to feel good again, and steady enough to be out and about on my own with my daughter, instead of having to go out with my hubby or parents because I was so afraid of having another bad fall. I'd finally got enough confidence back...and then it all seemed to be starting again.

I am SO glad to have found you all on here! Even if I do have to make changes at least I'll know why now!

Zippy, I feel for your dilemma. It's absolutely hateful, and is the reason so many of us turn to self-treating. You got great replies from Susie and SD, there. But, I thought I'd add, it's not the size of your dose they object to, it's your low TSH. They were taught in med school that a low TSH causes osteoporosis and a heart problems. It's not true, of course, but they cling to this myth. They should not be dosing by the TSH, at all, because it's very unreliable, but they continue to do so. In actual fact, they are totally ignorant, as far as thyroid goes, and I for one refuse to entrust my thyroid health to doctors anymore. They are not worthy of that trust.

Hi greygoose, I thought I had replied to you but can’t seem to find it! I’m on the move this morning but I’ll check this thread later and sort it out. Apologies!

OK, no problem. :)

I’m back!

Thank you for your reply, and I can’t find my other comments...I was online rather than in the app so may not have pressed ‘send’...duh! Anyway, just wanted to say I appreciate your comments and feel that it is up to us to look out for ourselves! I was scared the first time my meds were being reduced as I didn’t know where to turn to and just felt I had to have a fall to prove a point.

With the latest consultant his first comments were for the heart and bones! Quite honestly if my bones were going to be that bad after 56 years I would have broken a few when I fell! As for the heart...I had a test in January and he couldn't find results either on file or on screen! I’m still breathing so I figure I’m okay!

My biggest worry is sourcing meds on my own in case the consultant and/or GP decide to stop prescribing. (Can they do that?) I’m going to ask for the list of endos through ThyroidUK too.

I feel so much better by just having found you all on here! I finally feel I have options again.

It's all rubbish. The TSH has nothing to do with bones and hearts.

I'm afraid they can stop prescribing if they decide they want to do so. But, if they do, just ask on here, and people will PM you links to their trusted sources.

As for the Thyroid UK list, it's all subjective. And given doctor might have been nice and amenable the day the person that recommended them saw them, but could change in between! I was chatting to someone early who saw a doctor from that list, and he was so ignorant it beggars belief, and he's really b******d her up! So, if you find someone on the list that you'd like to see, do check on her for other people's opinions before committing yourself. :)

Thank you for the advice on the meds and the list; will certainly check things out here first.

As said before I’ve tootled along quite happily all these years, obviously in some ignorance given the lack of internet in earlier years, and despite the heartaches we’ve encountered, but given the information I now have and the help on here the proverbial ‘black hole’ is closing up.

Thanks again!

You're welcome. :)

DoubleM
DoubleM
in reply to greygoose

Sorry Just jumping in from the other side of the thyroid fence :) and agree with greygoose I'm hyper and have basically been told I'm going to have lots of medical problems due to my TSH being <0.01 for nearly 10 years (osteoporosis, heart failure liver and kidney problems etc). I have none of these issues and feel there's a lot of misinformation coming from endo's and GPs.

I've had my anti thyroid meds increased to try and 'jump start' my TSH again and feel dreadful as my T4 is now at the lower limit and T3 mid range with TSH not budging yet.

Stay strong and there lots a great advice on here.

Hi DoubleM and thanks for your comments.

It’s awful isn’t it that the powers that be can control so much of our lives in the name of our health, even when they’re making us ill.

I’m looking forward to the results of the test ordered, to know for myself the outcome and the good advice I know I’m going to get on here.

greygoose
greygoose
in reply to DoubleM

When will these stupid doctors understand that a thyroid is not a Harley-Davidson! You cannot kick-start it.

If your TSH has been suppressed for 10 years, due to Grave's, there's very little chance of it ever rising. Your set-point has changed and suppressed is your normal, now. And it won't make a scrap of difference to your heart and bones because the TSH has nothing to do with the heart and bones. All they are doing is keeping you sick. I wouldn't stand for it, if I were you. They have no right to ruin your life with their ignorance!

Hi Zippy,

After all the very knowledgable and sensible answers above, I’m going to wade in with my immediate thought!

Why can’t you still take 250mcg? If you were well on that (I’m soon going to embark on the T3 route😉) what does it matter what the “experts” say? Take the extra 25mcg. You know your body, do what works 😉

Hi Murphysmum, and my thoughts exactly! I’ve been on the thyroid meds for 56 years and even with the medical advances not one of the ‘experts’ has ever mentioned T3! I know there are issues around supply of T3 at present so I’m not raising that with my current consultant/GP until I get the results of a complete blood screen I ordered.

My other worry would be sourcing meds elsewhere.

Apologies for cutting short, I have to go out right now. I will continue asap! Thanks so much for replying...I forgot to say that earlier! 🤪

I’m back! I just wanted to add that while I decided I needed to look out for myself I didn’t like going against the doctors in the UK, but what else can you do when you feel abandoned?

If you do decide to treat yourself, don't be apologetic (but don't be rude either).

I treat my own thyroid, and began doing so about 5 years ago. I told my doctor I was going to test and treat my own thyroid and she asked why. My response was "I think NHS guidelines on the treatment of hypothyroidism are sadistic and inadequate". She looked rather startled but didn't reply, and the subject has barely been mentioned since.

Please note that I didn't say that her treatment was sadistic and inadequate. I specifically mentioned NHS guidelines, for which she is not responsible. I wasn't trying to make her angry and I didn't want to get chucked off the surgery list.

Hi and thank you, humanbean! Your post is very helpful, and if you don’t mind me asking, may I quote you if needed?

I’m supposed to be lowering my Levo again on 1 August (to 200mcg) but as I have sent for a blood screen I will wait for those results first. I can reassess my cunning plan then. 🤫😂 As I have yet to receive written instructions to this effect I can blame the admin delay.

You can quote me if you think it would help. There are some doctors I wouldn't dream of saying it to though, so pick the doctor carefully!

I will be careful, I promise. 👍🏻

I’ve just committed that to memory! Thanks humanbean 😉

Be very careful with it. There are some doctors I wouldn't dream of saying it to.

I”may” use it if required, and only then with caution!

I struggle with brain fog and being able to say similar on the spur of the moment so having something in mind is handy 😉

Have you considered you may be B12 deficient? Doctors often overlook this. B12 is vital for your well-being and closely linked to both thyroid issues and miscarriages. I strongly suggest you check out the b12deficiency.info website, as this will explain things further.

I have several autoimmune conditions including Hashimoto's but I had to fight for b12 injections and eventually got backed by my neurologist for these. Sadly, I think the long delay in getting treatment was behind me getting the neuropathic pain, that now blights my life.

You have nothing to lose in getting your B12 levels checked and if your doctor won't check it out, find a doctor who will.

I sincerely wish you well.

Hi chocoholic17

Thank you for your reply. On advice of others in the thread I’ve sent for a private test already and B12 is mentioned in the list so hopefully I will find out more with the results.

At the time of my miscarriages nothing was mentioned of vitamins other than me taking Folic Acid, which I did after the second pregnancy as my daughter has a neural tube defect. After the fourth pregnancy I had a sterilisation as I was not willing to go through the heartache again.

I’ve taken multi vitamins, but not consistently. Generally my health has been good up until the Register fiasco.

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