Endo says he knows Il be better on T3 but not going to give it???

[redmoon]

Hi everyone, Just had a appointment with a endo, and when he asked how I felt, I started to explain how I feel, but he interupted and said, well your results are Perfect, ( they were just TSH 0.38 reference range 0.30 to 4.20, and ft4 results were 19.7 with reference range 12.0 to 22.0 these were taken in Sept, I said more tests should be done, he said no, then I told him I had taken T3 before when in Turkey and I felt amazing within hours of taking it, so here is the best thing I ever heard, and I directly quote him with this, Well of course, You ARE going to feel better with T3, all my patients who take it says they feel well and when I ask them to stop, they say absolutely No Way", Im looking at him stunned, I then said, so you know I will feel well on this but you are not going to give it to me? yes he said, because, its not the answer, T3 will contribute to you getting osteoporisis and heart problems, so down the line you will have problems, !! I said, but I have problems NOW, should your aim be to make me feel Well, not to stay within a range that the Computer/Lab says is correct even though I dont feel well. I then mentioned NDT, he said, what is that? I couldnt believe it, I said, sorry? I thought you were an Endocrinologist, how can you not know what that is, he said, after I explained it was Natural Dessicated Thyroid, Oh yea, I only know it as Armour. well it gets even more Surreal, I said, Im exhausted all the time, I cant sleep at night and cannot wake up in the day, Im wiped out 2 hours after getting up, I cant exercise, at this he interjected, Well, exercise is not the best way to loose weight, I said I gained 10kg in the past few months, he said well, you could have Sleep Apnoea if your waking up wrecked, I told him I have Sinus issues so of course I would snore. He then suggested that I come back in 3 months after my Sinus op and we will talk about anything EXCEPT Thyroid, I then asked so, what will we talk about then? he said, everything except thyroid, we wont mention the word thyroid, I asked again, so what will we talk about then, he said he didnt know, so I said, ok,. youre an Endocrinologist and you dont want to talk about Thyroid. he then said, so who told you you had Thyroid problems anyway? maybe its not, why is your doctor treating you for thyroid. He obviously didnt read my notes or he would have seen I had a Hemi-thyroidectomy in 2017,. At that I basically just threw my hands in the air and said goodbye. my results in July were FT4 14.4 and TSH was 7.22 with the same ranges as above. anyone any comments on this whole scenario> would like to hear from you all.

ps, just an aside, I stopped taking Omeraprazole for my stomach would that have made the changes in my readings between July and Sept?

thanks so much

[greygoose]

Are you sure he was the doctor, and not the cleaner? Or someone delivering sandwiches, or something? How very weird!

[Charlie-Farley in reply to greygoose]

On point😂👍

[jimh111 in reply to greygoose]

Don't be silly - the cleaner is more intelligent.

[greygoose in reply to jimh111]

Probably true!

[tattybogle in reply to greygoose]

is this a script for a new Monty Python sketch ? ... if not , it should be.

[greygoose in reply to tattybogle]

lol

[jgelliss in reply to greygoose]

GG your sense of humor Amazes me. But you are so right. It's very tragic when you want to get all the right answers and treatments from Dr's only to be made more confused and ill from their lack of knowledge and understanding.

[shaws in reply to greygoose]

The cleaner is probably more knowledgeable if he/she has a dysfunctional thyroid gland. Especially if on this forum

[tattybogle in reply to shaws]

I'm actually quite tempted to get a job cleaning an Endocrinology dept.

I could walk round in a T shirt with:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Feel like crying after your appointment

................................. ? ..........................................

.....................It's not you ................................

..................... it's them ...................................

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

printed on it.

[shaws in reply to tattybogle]

If you were only wearing a T-shirt he might well take more notice!

🙃

[tattybogle in reply to shaws]

"spits tea out laughing" again

[greygoose in reply to shaws]

Oh, quite definitely!

[Charlie-Farley]

Words fail me!

I know more knowledgeable folk will be along soon, but I think omeprazole being a proton pump inhibitor (PPI) reduces stomach acid and as many of us have low stomach acid anyway it can actually make things worse - more difficult to digest and to absorb nutrients leading to vitamin deficiencies. So if you are off them now you might be getting and improved absorption.

However this does not mean T4 is being converted to T3 - a whole different issue - the next step as it were. Without optimal vitamin levels though, you simply won’t get the best out of the medication you are on.

So you are on your knees despite being ‘in range’ Trouble is your Numpty Endo doesn’t have a clue and I would imagine all his other patients supplementing with T3 are self-medicating.

If you had a full blood test with FT3, FT4, (TSH) and vitamins you would have a better picture of what is going on as vitamins need to be at least mid range not scraping in at the bottom. We get low vitamins when hypo and PPI’s could have exacerbated that.

We really do have to paddle our own canoes. Does the idiot not realise being unable to be active and do load bearing and even gentle exercise makes us more prone to heart problems and osteoporosis? They seem to have dumped the idea of ACTUALLY making people well and just work on prolonging an ‘existence’.

Hopefully SlowDragon will pick up this post she has great advice on blood tests and vitamins and I’m sure there are others who can add more useful info.

[shaws in reply to Charlie-Farley]

They seem able to prescribe for any other medication except a 'life-giving hormone' for which the brain and heart have the most T3 receptor cells. T4 is assumed to convert to T3 and it may do for many but not for the majority on this forum.

If you want to draw a member's attention to a post put an @ sign before their name and some names will pop up and select the one you want.

Charlie-Farley

SlowDragon

[Charlie-Farley in reply to shaws]

These last couple years have been such a revelation to me regarding the widespread ignorance of thyroid issues- if it was in any other sphere of life e.g. business e.g making cars - the company would fail. Yet being useless at treating people with thyroid problems is supported 🤔

[headinjuryhypo in reply to Charlie-Farley]

I love the sarcastic wit of these exchanges! Gallows humour is the best.Seriously, heart disease and osteoporosis are indeed connected with thyroid issues, but they are also classic symptoms of growth hormone deficiency (see NICE TA64). If you have these problems, and also had a previous head injury, (or even if you didn't), this is something that everyone ought to check out. And if you do get it checked out, beware of consultants telling you that your IGF-1 levels are normal and therefore you don't have GHD, because this just isn't true. Up to 65% of people with GHD have normal IGF-1 levels. They may also tell you your pituitary MRI is clear but this again doesn't exclude it. See our website which we set up in memory of our son Christopher for more information christopherlanetrust.org.uk

[Charlie-Farley in reply to headinjuryhypo]

You need to pop this info on a separate string so more people can see this.

[headinjuryhypo in reply to Charlie-Farley]

Heart problems and osteoporosis? But these are classic symptoms of growth hormone deficiency! I wasn't aware that they were symptoms of thyroid deficiency too.

[headinjuryhypo in reply to headinjuryhypo]

sorry, I didn't mean to post that. I looked it up and found they were!

[tattybogle in reply to headinjuryhypo]

this article fro GPonline may interest you ... it details the effects on heart of hyper /hypothyroidism. healthunlocked.com/thyroidu....

[Charlie-Farley in reply to headinjuryhypo]

Hypothyroid sufferers are told they shouldn’t have a suppressed TSH but in reality TSH is only produced to kick the thyroid into making hormones so when we have sufficient levels in our blood delivered through medication and we feel ok this shouldn’t be a major concern.

However, somewhere down the line this myth emerged about a suppressed TSH causing osteoporosis and heart problems…..that myth is so powerful doctors will under medicate patients and leave them living a half-life in order to keep TSH results ‘in range’. This half-life makes any activity arduous. Inability to exercise is going to impact on health…..but they only come at the issue from one direction, not in the round.

When I was under medicated at the outset of my diagnosis (before I realised the GPs know knack all) I couldn’t peel myself out of bed and my husband was getting me up making me cups of tea. I took 2 hours to get washed and dressed then another two hours to recover. It took months to get properly medicated after being left grossly under medicated for the first six months 😱. Had to fight for every dose increase. Slowly trying to regain my fitness now that my levels of levothyroxine are adequate.

It’s been a revelation as to the ignorance around these issues held within the medical profession and even the way they come to decisions.

Very two-dimensional and simplistic

[redmoon in reply to Charlie-Farley]

so, by this logic, everyone who has heart problems or osteoporosis should be considered by default to have Thyroid problems. bet they would say No no no dear that would be a ridiculous assumption to make. run along now, the doctor is busy doctoring. that 50 quid and see you next month for the next payment,ahem sorry appointment.

[Charlie-Farley in reply to redmoon]

😂🤣😂🤣

[SlowDragon Administrator]

ALWAYS get full thyroid and vitamin testing done BEFORE seeing any endocrinologist

How much Levothyroxine are you currently taking

Do you always get same brand Levothyroxine at each prescription

Omeprazole will lower vitamin levels

Exactly what vitamin supplements are you currently taking

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

Just testing TSH and Ft4 is completely inadequate

[redmoon in reply to SlowDragon]

Hi to you and everyone who has replied to my post. just to clarify on some of the points mentioned. Im in Republic of Ireland so not an endo in UK, It was the first time to see him as I had been on a waiting list for Years, and Years, I do attend an ENT clinic at another hospital but they deal with my Sinuses, and they were the ones who removed half my thyroid in 2017 as they said I had nodules, the reason I only had TSH and FT4 is because that is all that the GP ordered as was same done in July. I cannot persuade anyone to do more than than that. His other patients are most certainly self medicating, I know its bull about the osteoporosis and heart issues, as it is one of the most noted side effects of actual Levothyroxine, He obviously missed that class, He proceeded to draw me a very badly impression of a Pituatary gland, to which I quickly pointed out to him, Yes, exactly, T4 is related to the Pituitary and I asked him, why do you not want me to feel better? surely that should be your mission? as for Osteoporosis and heart problems, being overweight is going to exacerbate those issues also, I said, if a patient came to you with a problem Other than Thyroid, and you were asked to find out whats wrong, say Cancer, would you not pursue every avenue to discover what they had and how to fix it,? Why should it be any different for me and thyroid patients. He said, oh Il weigh you, I said, I must be 100kg, he said no no no, then he weighed me and i was 95kg then the Obesity word came up, I said, YES , why do you think Im overweight, its because Im not getting treated properly for thyroid, which can cause weight issues, Im tired, so cannot exercise, because of Thyroid issues, Im not sleeping at night, and then cannot wake up in day because of Thyroid issues, I have, cold hands and feet, brain fog, dry skin, deeply ridged and cracked nails, pain and aches in every bone and muscle in my body. dry eyes,choking sensation in throat, constantly clearing something stuck there. low mood, (on Lustral) for that 200. palpitations, should I go on, He said No, I said what do you suggest, thats when he said, We will talk in 3 months, when we wont mention the word thyroid. I said, so What do you think I have then if you dont think its thyroid? he said I wouldnt have time to list it all, I have other patients, I said, Oh, do they have NO Thyroid issues either then? I said, Ive waited years to see an endo and now you probably think Im imagining this, So if I come back in 3 months, is it your plan to tell me Its all in my head that im a Hypochondriac then forget that right now, . Im still open mouthed at his response. when all else failed he rolled out the, well we just dont do that, to which my response was WHY? I think he thinks Im Mad.

[SlowDragon Administrator in reply to redmoon]

So how much levothyroxine are you currently taking

Which brand of levothyroxine

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

What vitamin supplements are you currently taking

Always stop taking any supplements that contain biotin a week before all blood tests

Full thyroid test in Ireland

letsgetchecked.ie/home-thyr...

Vitamins

Vitamin D, folate and B12

letsgetchecked.ie/home-esse...

Iron and ferritin

letsgetchecked.ie/home-iron...

[redmoon in reply to SlowDragon]

hi, thanks you all for taking time to reply and comment, love the one about Monty Python, anyway, Im on Eltroxin 125mcg, made up of 100 and 25, I take it at night now, I used to do in morning but found it difficult to do in fasting as I must eat when I get up, so night time suited me as it is more likely to be able to do far away from food. Im using the same brand for years. the only change was the tsh of 7 to 0,38 which I believe was due to me stopping the Omeraprazole. I take vitamin D Desunin 200 I think doc prescription, I take vit B12 myself and Chromium Picolinate because Im craving sweet things a bit too much. take an antihistamine and thats it. except the Lustral for my 'Depression' and blood pressure, Coversil 10.5 morning and Amlodipine at night. Fenergan, think this is for pain and Amytriptilyne to help me relax, Ive stopped this as it was piling on the pounds like lightening. Does anyone have any comments on my results. what do y'all think of them?

[SlowDragon Administrator in reply to redmoon]

Many people find taking levothyroxine at night is better absorbed at night

It’s absolutely ESSENTIAL to always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after….and absolutely no other medications or supplements within 2 hours of levothyroxine

You can take levothyroxine in middle of night if regularly get up for the loo in night

Test thyroid and vitamin levels 6-8 weeks after taking levothyroxine correctly

[tattybogle in reply to redmoon]

"Does anyone have any comment on my results ?"

Crikey that's a lot of 'other' things .

SSRI antidepressant, Lustral (sertraline)

Coversil ? ...for lowering blood pressure in the morning,

Amlodipine .... (calcium channel blocker ) at night,

? phenergan medicines.org.uk/emc/produc... (histamone blocker) is this for insomnia ?

Tricyclic antidepressant ,(amitriyptyline), that you just stopped.

Do you have heart problems ? high blood pressure ?

How long ago did you stop the amitriptyline ?

(Not that i know anything about it but it may affect other peoples answers to you )

How long ago did you stop the omeprazole ?.. if this has resulted in you absorbing more T4 from your levo dose , then that's the same as having a dose increase .. so you should wait at least 6 weeks from stopping it to see how you feel then ...and then get a blood test done that includes fT3.

basically there are lots of changes there .....and thyroid blood results only give useful information when there have been no changes for at least 6 weeks , (and they really need to include fT3 which means you usually have to do them yourself)

[redmoon in reply to tattybogle]

hi, ha ha, I know I listed a lot of stuff there, but these were not changes made, these are all medications Ive been on years, none of these have changed since beginning the eltroxine , I stopped the amyitryptilene months ago (4 or 5 at least) which means Ive had two bloods done since stopping. the phenergan is for help sleep, also at least 6 months on it. The omeraprazole was stopped after the TSH of 7, so it obviously has impacted the latest result of 0.38 , I know i will probably have to get more comprehensive testing done myself but for now, does the Ft4 of 19 mean anything to others here.

[tattybogle in reply to redmoon]

well it's gone up from 14 .. which fits with you possibly absorbing a bit more Levo . but it's still well in range , 19.7 [12-22]

That's a surprisingly big drop in TSH for a quite small increase in "Levo dose" though.. Which is why i wondered about any other changes.

Sorry, it's past my bedtime

Somebody who knows more than me will hopefully be along tomorrow.

[Batty1 in reply to redmoon]

Anti depression medication can cause thyroid level issues. I had this problem when I was on Cymbalta my levels hit rock bottom and once I stopped and tested 8 weeks later my levels went back up and NO I did not take cymbalta anywhere near my thyroid meds

[redmoon in reply to Batty1]

hi, wow lovely people such excellent responses. ive been on anti depres,lustral for years now so its not that which changed readings

[Batty1 in reply to redmoon]

You think it might not be causing issues because you’ve been on it for years but it’s possible something with your body or the actual meds could have changed.. I definitely wouldn’t discount it.

[redmoon in reply to Batty1]

Il bear that in mind and check it out on the leaflets to see if any fillers changed, but is the changes that I noted good or bad do you think?

[Batty1 in reply to redmoon]

Research online and see if others have experienced issues similar to yours. The leaflets are good but they don’t give you others experiences with it.

[jimh111]

T3 does not cause (no more than T4) osteoporosis and heart problems onlinelibrary.wiley.com/doi... . You can download the full pdf via Sci Hub. He needs to study thyroid.

[MissGrace in reply to jimh111]

Thank you for the link. In fact, if you take T3 so you feel well and can exercise more, then your bones could well be stronger!

[jimh111 in reply to MissGrace]

Exactly.

[Fluffysheep in reply to jimh111]

Thanks for that link, am going to save it in preparation for my endo appointment next week. Last time he saw me, he told me exactly what all the others say, that T3 causes increased risk of AF and osteoporosis. He also failed to follow the NHS guidelines in relation to prescribing T3 (wrote a letter to my GP asking them to do it!) and I lodged a complaint via PALS (which still hasn't been resolved). Am really looking forward to my appointment next week, not!

[Hidden in reply to jimh111]

Correct. I had Osteoporosis long before I had a TT for Cancer. Every female member of my family on my mother’s side has it.

Ironically, I took HRT after a Total Hysterectomy to protect me from Osteoporosis and Heart Disease. It did not, but I did have breast cancer.

I don’t know enough about the science of why it was determined that suppressed TSH causes these conditions - unless some research was done on patients with Graves who had a low TSH and high Frees which could have caused the problem,

If we don’t know, let’s make it up.

[jimh111 in reply to Hidden]

High thyroid hormones can cause atrial fibrillation and osteoporosis but this includes people on too much levothyroxine. The early studies were in people with thyroid disease or thyroid cancer, these people often had concurrent damage to the parathyroids which has a big impact on bones. People with Graves’ can have very high T3 levels and hence get cardiac / bone problems. Provided it is monitored the record shows that liothyronine combination therapy is safer than levothyroxine monotherapy.

[Hidden in reply to jimh111]

Thank you Jim - but I’m still confused about how I acquired osteoporosis when I’d never had any thyroid problems, and had normal TSH and Frees. Conversely, I wasn’t protected from Osteoporosis by 10 years high dose HRT after total hysterectomy.

I can only conclude that there is no connection between low oestrogen and osteoporosis. That leads me to wonder why anyone ever thought there was. Perhaps this arose from the view that high thyroid levels and low oestrogen levels are connected, hence the hypothesis that pregnant women or those on HRT usually require increased doses of exogenous thyroid hormones - which they invariably do.

Some of this scientific and medical thinking emanates from inconclusive research which makes glaring assumptions.

There follows an extract from such a paper which clearly shows how the intention to extract what is useful frequently results in quite the reverse:

There was an old lady who swallowed a fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady who swallowed a spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady who swallowed a bird;

How absurd to swallow a bird!

She swallowed the bird to catch the spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady who swallowed a cat;

Imagine that! She swallowed a cat!

She swallowed the cat to catch the bird,

She swallowed the bird to catch the spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady that swallowed a dog;

What a hog, to swallow a dog!

She swallowed the dog to catch the cat,

She swallowed the cat to catch the bird,

She swallowed the bird to catch the spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady who swallowed a goat;

She just opened her throat and swallowed a goat!

She swallowed the goat to catch the dog,

She swallowed the dog to catch the cat,

She swallowed the cat to catch the bird,

She swallowed the bird to catch the spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she'll die!

There was an old lady who swallowed a cow;

I don't know how she swallowed a cow!

She swallowed the cow to catch the goat,

She swallowed the goat to catch the dog,

She swallowed the dog to catch the cat,

She swallowed the cat to catch the bird,

She swallowed the bird to catch the spider

That wriggled and jiggled and tickled inside her!

She swallowed the spider to catch the fly;

I don't know why she swallowed a fly - Perhaps she’ll die!

There was an old lady who swallowed a horse;

...She's dead, of course!

[redmoon in reply to Hidden]

wow, that was great, haven't heard that since I was a child, (long long time ago) oh thats the start of another song,😀you have great patience to write all that, which reminds me to apologise to all on here in advance, excuse my punctuation and caps etc, Im have my keyboard in a awkward spot to reach beyond the main so bit lazy putting in the punctuation and spelling, its usually whats convenient for me not that Im a bad speller ok thanks all

[jimh111 in reply to Hidden]

Osteoporosis can be caused by other issues than excess thyroid hormone. Even with good oestrogen levels women can get osteoporosis so you may just be unlucky. I'm getting beyond my knowledge of this subject now.

[Hidden in reply to jimh111]

Thanks for sharing what you know Jim. Did you like my poem?

I’ve just looked it up and eating porridge prevents Osteoporosis in women and men ☺️

[jimh111 in reply to Hidden]

Liked the poem, an exercise in logic. Didn't know porridge prevents osteoporosis, it does help eliminate some environmental toxins a little and is a good source of soluble fibre ... and it's very cheap.

[Hidden in reply to jimh111]

Indeed. Before the days of statins it was also recommended for high cholesterol 😊

[headinjuryhypo in reply to Hidden]

see my reply higher up about the connection between heart disease, osteoporosis and growth hormone deficiency.

[shaws in reply to jimh111]

If I don't have T3, I cannot function at all. I become very unwell.

[jimh111 in reply to shaws]

I’m the same, I try to separate out the various reasons we need T3 and the dose we need.

An added confusion is distinguishing between a TSH suppressed by high hormone levels and a subnormal TSH due to insufficient pituitary or hypothalamic stimulation. In the latter case there is reduced conversion and hence a need for T3. For these reasons a very low TSH may be OK or not depending on the cause.

[shaws in reply to jimh111]

I have actually lowered my dose of T3 by half, going by 'how my body feels' and I'm well.

I don't bother about the TSH so much and my new GP is not worried. In fact the 'new' doctor in the surgery is knowledgeable too,

A previous one (in his 60's) told me that "your TSH is too low, Your T3 is too high and T4 too low".

I said, "yes doctor" and TSH is low because I take T3 only - so my T4 will be low and TSH too".

He stated but T3 converts to T4 - "No doctor that is incorrect".

[jimh111 in reply to shaws]

This is why the cleaner is more intelligent than the doctor. The cleaner will say they don't know, the doctor makes it up to suit their objective. It's important to know what you don't know.

[Hedgeree]

Hi redmoon,

I'm curious to know was that an endo who you'd seen before?

I know ThyroidUK have a list of endocrinologists but do they also keep a list of unhelpful endos to possibly avoid? That would be useful to those that are looking to find a suitable doctor to advise them.

Don't know how ethical it would be to have a list of rubbish endos!? Apologies if this has already been suggested?

[radd in reply to Hedgeree]

Hedgeree,

Bollocks to ethics, it would be the sheer number that make it an impossible task to upkeep! 🤣

[tattybogle in reply to radd]

lol , just made me spit my tea out laughing

" i think we're gonna need a bigger list ... "

[redmoon in reply to Hedgeree]

hi sorry I have forgotten whether I had answered you or not. No this is first time Ive seen endo I dont even think he was one after that performance. thanks

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Have you had thyroid antibodies tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

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 and last dose levothyroxine 24 hours before test

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

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

[SlowDragon Administrator]

Sleep apnea and autoimmune thyroid disease often connected

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

thyroidpharmacist.com/artic...

[Imaaan]

Words fail me after reading this. It's heartbreaking that this is the norm and not the exception. Every endo who's train of thought is similar should have their license revoked for prolonging the suffering of others

[JAmanda]

I’d simply get private tests, if you take your Levo at night, get the latest blood test slot so you’re nearly 24 hours after your dose, and leave off taking any vitamins with biotin in for a week before test. Get your tsh t4 and T3 then you’ll get the full picture. If you know T3 has helped you before then consider self sourcing it online.

Post your results here for help. Yes your doctor was unbelievable.

[ClareP5]

Unreal - my GP suggested I research the menopause- they hadn’t read my notes that 15 years prior I had surgery which meant I was already there! If you’re taking omeprazole that can block uptake of B12.

[Hidden in reply to ClareP5]

I had annual appts for cervical smears when I’d had a total hysterectomy many years previously. 🙄🙄🙄🙄🙄🙄

[serenfach in reply to Hidden]

I recently had an appointment come through for a prostate examination.

I phoned to cancel and they asked why. I told they I am female, and she asked what had that got to do with it?

[Hidden in reply to serenfach]

Frightening, isn’t it? x

[tattybogle in reply to serenfach]

"they asked why. I told they I am female,...."Well i think you are just being deliberately obstructive.. surely you could get a prostate from one of your sheep and sent it down in a wheel barrow for them to examine ?

[serenfach in reply to tattybogle]

Only one male sheep here and he is a bit busy making lambs for the spring. I can think of several men.... maybe not go there....

[Nannyhoon in reply to serenfach]

"Several men..." Surely, they'd have to be endocrinologists!

[serenfach in reply to Nannyhoon]

Good idea!

[Cavapoochonowner]

He needs to be reported and struck off.He is masquerading as an endocrinologist.

[Partner20]

Aside from all things thyroid, there is the issue of sleep disturbance to be addressed, one point at least in which your endo is correct! Sleep apnoea is not in fact snoring, it is effectively sporadic cessation of breathing. You say you are waiting for sinus surgery, the outcome of which could well be improved sleep, but, if this does not prove to be the solution, a sleep study is to be recommended. However, hopefully the surgery ( I don't know which procedure you are having) will be successful. You really need an FT3 result to check your T4-T3 conversion, as your other results are optimal, and if this is good, it may be that investigations are needed for other causes of your symptoms such as vitamin and mineral deficiencies, metabolic issues, or another condition entirely. Hope your surgery goes well and has the desired outcome.

[redmoon in reply to Partner20]

Hi thank you, My husband is on a CPAP machine so Im familiar with the Sleep Apnoea scenario. I dont snore as a rule but Im so congested at the moment with the Sinuses blocked. I actually had the same operation back in 2016 where they did the sinuses and repaired a deviated septum, absolutely seriously painful, and the resolution only helped for a while, Im dreading this op. again but I need to do it for my breathing, I also have COPD which Im on 4 different inhalers for, but no help.I constantly wheeze and its getting difficult to even get up a stairs without having to stop, I have a respiratory dept appointment this week so will see, also a Cardiology appointment should be forthcoming soon. I know one thing is knocking on to the next thing, so my weight piling on is causing my breathing to be more laboured, which is leaving me unable to exercise, I feel so under pressure when I do anything remotely taxing. vicious circle (s) really.

[Partner20 in reply to redmoon]

Ah, I sympathise, as my partner has had surgery for a deviated septum as well as other throat and sinus procedures. I have to say that his snoring improved after surgical intervention, but issues similar to sleep apnoea occurred due to various other conditions, unfortunately, which are only now being resolved. One thing he would love to do is regain his sense of smell, which he lost many years ago, together with his sense of taste. I do hope your surgery goes well, and has a long-lasting outcome, ss I know how debilitating sinus issues can be. Good luck.🙂

[steven9091 in reply to Partner20]

Your present circumstances don't determine where you can go; they merely determine where you start.

[RedApple in reply to steven9091]

steven9091,

Your comment is cryptic and doesn't seem to relate much to this discussion.

This is a forum for people with thyroid disorders. Do you have a thyroid disorder?

[megiyat in reply to RedApple]

I dont understand why u say its cryptic. Of course I have a thyroid disorder! I wouldn't be on here if I didn't.

[RedApple in reply to megiyat]

megiyat, my question was not to you but to the member called steven9091 above, who seems to have just posted a random remark on this thread 🙂

[megiyat in reply to RedApple]

Hi RedApple. Im sorry. Im getting confused with who says what and to whom! I dont post as a rule so not sure how i manage it. What was the random remark? I dont think I seen that?

[Carys21]

What an absolute moron. I gave up with the NHS several years ago and I treat myself with dessicated thyroid. I will comment on the osteoporisis and heart problems though. My late mother died from heart disease that IMO was a direct cause of not being treated for the underactive thyroid she had clearly suffered from all her life, and she also had very fragile bones that broke easily in her early seventies. Had she been treated with thyroid hormone instead of warfarin and god knows what else (they were giving her 30+ different medications a day) then I do not believe she would have died with heart failure and badly ulcerated legs that had literally rotted away.

[redmoon in reply to Carys21]

oh my lord, so sorry to hear that about your mom, thats so sad. My sister had thyroid issues, underactive , she was treated with NDT and she had 7 kids, 2 sets of twins, me on the other hand have been treated with Levothyroxin and had one child and 7 miscarriages/still birth/ premature deliveries. so angry, about all that. my sister is 19 years older than me so had the benefit of the old fashioned treatment of dosing til your well. I had the modern way! My first born was before I started to get treated for thyroid. the rest as they say is a sad medical history.

[serenfach in reply to redmoon]

Sending a hug.

[shaws]

He should be sacked I believe because he just does not care for his patients to recovery at all.

How can a 'supposed to be knowledgeable' person' about all things to do with a dysfunctional thyroid gland" fail to be aware that even his body cannot and will not function if his gland doesn't produced T3 to enable his body to function as normal i.e. breathing for instance and maybe even affect his brain as both brain and heart have the most T3 receptor cells.

[redmoon in reply to shaws]

definitely his brain has been affected by something.

[shaws]

What a response from an Endocrinologist but I think his position may be in danger if he 'doesn't toe the line' which is do not prescribe T3 as the NHS has to pay an extortionate sum of money for one packet.

[redmoon in reply to shaws]

yes, although I am in Rep of Ireland and Not NHS our HSE is probably no different. its all public health care system. He said he was a doctor from another well known hospital, so I was supposed to be impressed with that I think, so when I was leaving I said, oh is it Dr. or Mr. he said oh, its Dr. so I knew then that I wasn't dealing with a Consultant. so I searched that hospital website and guess what, couldn't find him anywhere. so chances are he was some trainee sent off to practice on some thyroid patients. im going to ring the hospital to ask about him see what they say. about dr. woodn't

[shaws in reply to redmoon]

How frustrating for you. When we've waited for an appointment - anxious to talk to someone who knows how to diagnose and treat - it is a huge disappointment when we leave as we're sure we know more than the majority who are supposed to know more than the patients.

[shaws in reply to shaws]

Once-upon-a-time our doctors could prescribe what they believed was the best thyroid dose for the patient i.e. NDTs, or T3 or levothyroxine or T4/T3 for us as individuals but now they seem not to make any decisions and I assume this has permitted them to lose the knack of prescribing a dose of whatever would help the patient, be it NDTs or T3/T4 , T4 only or T3 alone.

I am also aware that GPs have been restricted even more and we end up on T4 only and many hypo patients cannot improve their health on it and remain symptomatic.

[pennyannie]

Hello Redmoon :

It's so disappointing, waiting, believing the specialist is there to help, advise and support you back to better health.

Vent away - and when you come back down to land think about doing it for yourself.

You've experienced T3, you know the difference it can make, and why would you not want your old self and life back now in 2021 /22 .?

I had RAI thyroid ablation in 2005 becoming very ill some 8 years later and was refused anything other the monotherapy with T4 - Levothyroxine.

I now self medicate and have my life back and haven't needed to see a doctor since DI myself.

I notified my surgery after 6 months on NDT advising them of my new regime and to take T4 off my prescription. I offered to make myself available for the yearly thyroid blood test providing a TSH, T3 and T4 were run and I've never heard a word from them - except T4 came off my prescription after around 18 months and more recently I had a phone call to offer me a Covid vaccination.

[Batty1]

Wow you met a real live monster … He sounds like such an idiot.

[redmoon in reply to Batty1]

ha, here is the funny thing he was so calm and quiet spoken at first, then i detected that despite that there seemed a simmering anger underneath, bet he wanted to tell me to F Off, ha, in fact Id say he was so measured it was almost condescending. if that makes sense. I use little tricks to remember things some times and his names was Wood, so Ive nicknamed him dr. Wood'nt (wouldn't) Im amused, but maybe thats hysterics.

[Batty1 in reply to redmoon]

Its a shame to be medically discounted when your struggles are real but its been my miserable 5 years experience thyroid patients are throwaways when these Endo’s get your labs to fall into the “magical”range even though their is nothing magical about these ranges for us.

[KCFryer]

Hi! I’m really sorry to hear all this.

I was diagnosed with hypothyroidism when I was 14 years old in Brazil and have been treating it with the same brand of Levothyroxine for the past 10 years I believe, until I moved to the UK in 2018. l was never totally asymptomatic but was well and active.

I’ve been through the exact same situation as you for around 2 years now feeling the same symptoms. The joint pain and strong palpitations were aggravating more and more each day.

I was taking 3 different doses of 3 different laboratories to compound my usual 137 mcg, but never imagined this could be so harmful.

When things got worse and a wonderful lady GP in my surgery decided to help me, she ruled out other causes for my symptoms. Then she decided to finally refer me to an endocrinologist.

The endocrinologist she referred me to, completely dismissed my symptoms over a telephone consultation and took over a month to send a letter back to my GP. I was so desperate without proper help that I did something that I wouldn’t advise anyone. I stopped one of the brands and when didn’t feel better, I stopped the other 2 and after only 3 days I began to feel much better without any Levothyroxine and even the joint pain now is gone.

My GP is aware of that and is trying to get a response from the endocrinologist to request oral solution.

My advice is don’t give up complaining to different GPs until they hear you. Take the new government prescribing advice for patients who experience symptoms on switching between different levothyroxine products to your GP and ask for help.

gov.uk/drug-safety-update/l...

Try using exact the same Levothyroxine to see ow you feel. If nothing improves try requesting oral solution or combination therapy.

Read everything you can about your condition. Knowledge is power!

‘For the 5-year period between 1 January 2015 and 31 December 2019, the MHRA received 335 Yellow Cards reporting one or more of the terms ‘product substitution issue’, ‘condition aggravated’ or ‘drug ineffective’ with levothyroxine. The majority of reports were received from patients rather than healthcare professionals, with 47 of the cases having a healthcare professional reporter. Associated symptoms were mostly consistent with hypothyroidism or hyperthyroidism, and included fatigue, headache, malaise, anxiety, palpitations, pruritus, nausea, myalgia, dizziness, arthralgia, feeling abnormal, alopecia, depression, abnormal weight gain, and insomnia.’

‘If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.’

These statements are in the document I sent you the link above.

[redmoon in reply to KCFryer]

thank you for that

[redmoon]

you are welcome, so kind for you and everyone on here to take time to reply to me. thanks

[JessicaH]

So sorry to hear what a rotten experience you've had. Can you ask your doctor to refer you to someone else? You're entitled to a second opinion

[shaws]

I wonder what he would decide if he was diagnosed as being hypothyroid or a member of his family - who still felt very unwell on levothyroxine and told they could not be prescribed T3 as it was 'too expensive'!

Is he an endocrinologist or an accountant for the NHS? The main aim is to prescribe what enables a patient to recover and be symptom-free.

His statement is even more 'open' as it means no matter how unwell a patient is "I will not prescribe T3", Sadistic!!!!