Told to go on antidepressants: So I've been to... - Thyroid UK

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Told to go on antidepressants

Michaela_l profile image
73 Replies

So I've been to see the endocrinology consultant who said there's nothing wrong with me. He reluctantly put me on 25mcg levothyroxin the other week. TSH has been 22,26 etc dropped to 8 once on levothyroxin. Ft4 20,21. Said ft3 is normal after I asked about if I'm not converting properly. Been told to come off levothyroxin and to try antidepressants....was told TSH can rise because of high antibodies....so is that it then...I have to live with high antibodies and just feel rubbish... Explained my vision goes blurry, no energy, tachycardia after eating...but said I'm ok..in limbo again.

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Michaela_l profile image
Michaela_l
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greygoose profile image
greygoose

Oh dear! Another diabetes specialist that knows nothing about thyroid. Did you not ask him how antidepressants were going to lower antibodies? Stupid man!

No, that's not it. If you're not converting buy your own T3. Learn about your disease and self-treat. You're better off without morons like that! But, whatever you do, do not take antidepressants. Would be like putting a sticking plaster on a broken leg!

Michaela_l profile image
Michaela_l in reply to greygoose

I want to cry. I said about converting and possitbly testing reverse t3 and he basically said that it's all rubbish. Didn't even tell me what my T3 was because..well he just wouldn't. I mentioned my heart etc and he said it's unrelated. I'm fed up. I'm not at work at the minute; I work in the operating theatre and am part of the resus team when on call...so it's not a job I can go back into just yet. Said my ft4 is high enough..and that my TSH is ok...I said surely it's gone down (26-8, still high I know) because I'm on levothyroxin...but he said to come off it :S I'm reading and being told conflicting information. I'm unsure what to do; I have other factors to take into account..I'm hypertensive, have asthma, have had a bowl resection among other things..so I feel that before I take things into my own hands, I have an awful lot of reading to do. Thank you for your help

shaws profile image
shawsAdministrator in reply to Michaela_l

Michaela this Endo has done you a great service - although you may not think so at present.

He has saved you from following his advice and he obviously is the last person on earth who you would want to take advice from.

If you can afford to get a private test (we have two labs and one has a special offer of some sort every Thursday) Blue Horizon and Medichecks.

All blood tests have to be at the very earliest, and these are pin-prick tests so make sure you are well hydrated a couple of days before you draw blood. Or they can make an arrangement or maybe nurse at surgery (not sure about surgery but no harm in asking).

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D, iron, ferritin and folate.

Post results with the ranges on a new post for members to comment upon and most on this forum have recovered from symptoms through help/advice and sourcing own thyroid hormones. greygoose is right.

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

Michaela_l profile image
Michaela_l in reply to shaws

I'm now on iron tablets, being told it's slightly low, b12 is ok...I'm going to get print out later :)

greygoose profile image
greygoose in reply to Michaela_l

Right. If he wouldn't even tell you what your FT3 was, he's breaking the law. You have a legal right to know. Ring the hospital and tell them that you want a print-out of your results, and that it is your legal right to have one under the 1998 Data Protection Act. And, if the won't give it to you, there are steps you can take to force them.

He's right, though, that your FT4 is high enough, and that means your rT3 will be high, so really no point in testing that. But, even if you had, he wouldn't have understood the results. So...

Don't come off the levo. Even if you're not converting much, you must be converting some. It's better than nothing until you find another solution.

What is the conflicting information you're getting? All you have to do is ask here, and someone will know and be able to explain. :)

greygoose profile image
greygoose in reply to greygoose

Also, I would suggest you write a letter of complaint about this doctor, to his superiors. The advice he has given you is dangerous. He should not be treating hypo patients!

Michaela_l profile image
Michaela_l in reply to greygoose

It's conflicting because he's basically telling me what I said about converting and reverse t3 etc is rubbish...it seems what is said on here...from how he talks..isn't taken seriously in conventional medicine.. I'm at gp later for sick note so I'll get print out then

greygoose profile image
greygoose in reply to Michaela_l

He's telling you that because he's hiding his ignorance. He just doesn't know, that's all. I can assure you that the majority of people on here know more about thyroid than he does! We've been reading up on it for years, as well as having practical experience. I doubt he's opened a text book on the subject since he left med school - and then he only briefly looked at thyroid.

Do you really believe what he's telling you just because he's got letters after his name? It does against the teachings of all the greats, like Dr Lowe, Dr Skinner, Dr Peatfield, etc. Do you really believe he knows more then them put together?

And, it has to be said that very few doctors know anything much about thyroid. They have been taught that being hypo is no big deal. But, they don't have it themselves, so how would they know?

He's a nasty, dangerous idiot. Ignore him.

Michaela_l profile image
Michaela_l in reply to greygoose

So, do you think I should stay on my levothyroxin? He said an improvement in my heart is unrelated to me taking it..so I just felt like an idiot at that point. Im seeing a private consultant on the 31st may. I may just stay on it and see what he says. I'm looking at ordering blood tests for reverse T3, T3, T4 as well as the usual FT3/4, TSH..anything else? Vitamins D, b12..

greygoose profile image
greygoose in reply to Michaela_l

Ignorant doctors always set out to make their informed patients feel stupid. It doesn't mean you are stupid! He's the stupid one! Of course there's a connection between your heart and the thyroid. I would stay on it, if I were you.

rT3 testing is expensive and gives you no useful information. What are you going to do if it's high? Do you know anything about rT3?

FT4 and FT3 are the most important tests to do, because those are the tests that will show you how well you're converting.

T3 and T4 aren't very helpful, either. No point in getting these things tested for the sake of testing. Limit yourself to the useful ones, and those are the Frees.

Folate and ferritin are the other two useful ones. :)

Michaela_l profile image
Michaela_l in reply to greygoose

In that case, I will get a print out later...it was through the hospital so hopefully they can print of all results..they don't usually do ft3, but I have lied a few times and said the consultant wanted it..the consultant even said it's pointless..but surely...it's not! Thank you

greygoose profile image
greygoose in reply to Michaela_l

No, of coures it's not pointless! It's THE most important number. :)

Michaela_l profile image
Michaela_l in reply to greygoose

He was just kinda skimming over them.....on all my blood request forms, no one; gp nor consultant, have requested ft3..so that's why I keep saying them have, leaving the form at home

greygoose profile image
greygoose in reply to Michaela_l

The NHS doesn't like testing FT3. Maybe a cost-cutting exercise, maybe something more sinister...

Michaela_l profile image
Michaela_l in reply to greygoose

Well they do when I say the consultant asked aha...also, is there a chance, just like with type 1 diabetes, your cells could just become resistant to T3?

Hillwoman profile image
Hillwoman in reply to Michaela_l

Michaela_I, it is possible to become resistant to thyroid hormone. However, this is the kind of problem that you suspect and treat on an empirical basis, only after you've either treated or ruled out the more common hypo problems, such as low T3 resulting from poor conversion. You've a way to go yet before you reach that stage, but there is a group of people on the forum, myself included, who have forms of resistance to thyroid hormone, and we can give you more information if you ever reach that stage.

It's all rather involved, and I hope you'll forgive me for saying that you sound as if you need to do a bit more reading on hypothyroidism and related issues first. Greygoose gives excellent well-informed advice, so do follow her suggestions. :-)

Michaela_l profile image
Michaela_l in reply to Hillwoman

Hi, thanks. Yes I've got a few books on the subject, and am currently looking for some regarding resistance and conversion exclusively. If you could possibly point me in the right direction for some relevant literature, I'd be very grateful!

Hillwoman profile image
Hillwoman in reply to Michaela_l

Poor conversion is a different problem to resistance, though you can certainly have both, and Hashi's too! Looking at your FT4, although we don't have the lab reference range, it looks high, as others have pointed out. Insist that your consultant releases the FT3 test result which was carried out at the same time, because knowing both will enable us to give you more advice.

ShinyB recently started a post on thyroid hormone resistance, orTHR, where we tried to include all the most important and useful references in one post. (I was supposed to do this myself months ago, but my health crashed...) The link to the discussion is here:

healthunlocked.com/thyroidu...

Mamapea1 profile image
Mamapea1 in reply to Hillwoman

Hope you're feeling a bit better Hillwoman ~ sending you healing ✨wishes✨ and (((hugs))) 💕 xx

Hillwoman profile image
Hillwoman in reply to Mamapea1

Aww thanks, Mamapea1 , you've cheered me up. 😊 Am up and down a lot at the mo but at least there are some good days now. 😻

greygoose profile image
greygoose in reply to Michaela_l

Well, others have answered your question very well in my absence. :) And I agree with Hillwoman : it's possible, but you're not there yet. You probably don't even have much T3 to resist. So, that's the first thing you have to find out. One step at a time. :)

Michaela_l profile image
Michaela_l in reply to greygoose

Hey, hopefully getting print out later. It's always a pain! Haven't got reference range but TSH 8.1F, Ft 34.99 and Ft4 20.6 on 16th may..

Have a Dr calling me tomorrow so I can ask for referal letter, but also gonna ask if they can do my b12 etc etc along with iodine and selenium levels..

Michaela_l profile image
Michaela_l in reply to greygoose

Hi, also, he said to come off my levothyroxin because it may do more harm than good..

greygoose profile image
greygoose in reply to Michaela_l

I really don't think that 25 mcg levo is going to harm anyone with a TSH of 8! Your FT4 is high, yes, but we don't even know the range. But, even if it's slightly over-range, it's not going to do any harm, it's a storage hormone. And I very much doubt your FT3 is over-range with a TSH of 8.

This man knowing so little about thyroid it brings tears to the eyes! :(

Mamapea1 profile image
Mamapea1 in reply to greygoose

It certainly does bring tears to the eyes!😰 ~ despairing that nothing ever changes, and the misinformation continues to be spouted ~ so dangerous. x

Salphy profile image
Salphy in reply to Michaela_l

If it makes you feel any better, I saw my private endo on Thursday. Took along my most recent bloods t4 way over.

Tsh 0.3 (0.27-4.2)

Ft4 25.6 (12-22)

Ft3 5.3 (3.1-6.8)

Told him I was still tired and my t3 was the same as when first diagnosed and he actually increased my Levothyroxine (t4) further.

Said he wasn't concerned about my raised t4 as tsh was still normal so wanted to see if we could get t3 any higher.

So you are certainly way off it doing any harm 🙂

Michaela_l profile image
Michaela_l in reply to Salphy

Great :) tell him that lol aha

Salphy profile image
Salphy in reply to Michaela_l

Unfortunately you have to sieve out the OK ones from the diabolical.

I went to him as my nhs referral waiting list was 5 months. Finally got an appointment for an nhs one in 3 weeks but I don't think I'll bother as I expect they will try to undo everything the private one has done.

At the end of the day you know your body better than anyone. You've done the best thing you can for yourself which is find this forum and get educated. Good luck with your journey :)

Michaela_l profile image
Michaela_l in reply to Salphy

Thank you :) I love reading about anatomy and physiology anyways..so it's all good fun!

Salphy profile image
Salphy in reply to Michaela_l

I'm a specialist physio and still learning haha :)

Judithdalston profile image
Judithdalston

Only pills you need is more thyroid medication ( to get your TSH down to 1 or less), like 50 mcg levothyroxin normal start up dose for hypothyroidism. Unfortunately without knowing your actual FT3 result it's difficult to tell whether you have a conversion rate problem; FT4 result is on high end at mo, but you might convert more proportionately when you are on a decent T4 dose for at least 6 weeks. Was it he or Gp who thought antidepressants cured high antibodies? Really .. talk about hysterical little women and late 19th C medicine...makes one's blood boil!

Michaela_l profile image
Michaela_l in reply to Judithdalston

No it was the endocrinology consultant who said I may have background anxiety..I said but I don't? I know I don't..the only anxiety I have is from this! I feel like I'm making it up! I'm just called a private hospital and am seeing the consultant on the 31st.

Judithdalston profile image
Judithdalston in reply to Michaela_l

Hope he/she is better... I paid for a private endo years ago when first diagnosed hypothyroid, and his letter to GP after stopped short of calling me 'bonkers' , he ignored my private bloods that showed I was obviously not converting to T3 properly and thought I should be tested for sleep apnoea instead ( negative of course). As I've got worse, including a diagnosis of fibromyalgia, I've learnt to go it alone ( private blood tests, buy T3 from abroad) with the support of this great forum. Good luck Michaela.

Michaela_l profile image
Michaela_l in reply to Judithdalston

Thank you, seriously it's this forum that's making me feel better...being told there's nothing wrong with me, I just..well...I'm sure you know..wanted to cry! It's difficult; were paying for a wedding, I'm off work and they are going to reduce my pay, so trying to pay private is hard work..but I want to feel normal. He said there's probably just some background anxiety you don't know about..nevermind the fact my TSH is still up..said it's the antibodies causing that...

Saya85 profile image
Saya85 in reply to Michaela_l

Does he even understand what tsh does and why it goes up or down?!

Tsh reacts on a feedback loop to your levels of thyroid hormone.

Too much free t3 and it goes down. Too less it goes up. Put simply pretty much.

Antibodies attack the thyroid gland not the pituitary - if they damage the thyroid so it can’t produce as much t4(hence less t3 conversion) then it will put the tsh up (indirectly).

Point is it’s the t4/t3 values that are important ! That’s the hormones you use and convert and store etc

My goodness I learnt that at first year of uni in a slightly unrelated field of medicine!

So saying tsh is up and to ignore it is pointless. Hypos are usually ignored because the only thing they’re really taught is look out for hyper and suppressed tsh - how dangerous it is- causing HEART problems as well as other issues. Again not understanding that a suppressed tsh is because of high frees etc rather than the tsh value alone.

Of course every organ is affected by thyroid hormone- your endo’s ignorance is astounding.

I would email thyroid Uk to find a private endo near you who would be sympathetic to your plight (as most work for nhs also and would give you similar response) before you shell out for your private appt.

definitely get your printouts and post on here (with ranges) and people will direct you on what to consider /ask.

Definitely wouldn’t come off the thyroxine in between.

(My sister was told her vit D was borderline low at 50... despite taking 3000iu daily! The GPs response ? “Oh 3000iu is quite a lot- maybe you should reduce it...” and that’s going to raise her vit D levels how??)

Honestly a lot of doctors these days are scared of actually doing anything against guidelines and scared of putting a foot wrong rather than looking at the picture as a whole and actually trying to understand complex issues (esp with time constraints)

And I say this despite having many doctors and health professionals in the family. If I hadn’t used this forum to research my own health and push the doctors I would have been down to working 1 day a week, no more than 20mins drive and little to no social life. All because of thyroid and low vitamins !

As overwhelming as it is, do research as much as you can to understand the basics- it’s a lifesaver

Good luck xx

Michaela_l profile image
Michaela_l in reply to Saya85

Hey, thank you. Yes I've done a fair amount of reading and looking at reputable studies. I'm currently off work, and I hate it. I feel so guilty. I won't lie, though im bored, I'm enjoying being able to sleep. I work in the operating theatre mainly, but also work down in resus when needed..so if I return too early and something happens, I risk losing my registration.

Anything I said to this guy..he just kinda dismissed..I'm not a physician, but I believe I understand the basics.

I've emailed Thyroid UK for the list of drs. I'm hoping the private consultant I'm going to see is in there!

Thanks.

shaws profile image
shawsAdministrator in reply to Michaela_l

We've had so many Researchers, worldwide, and even one of our Adviser's and his team, have proven that many need T3 instead of T4.

There has also been evidence as far back as June 2008 'T3 therapy may be substituted for T4 Therapy' in The Endocrine Society 90th Annual General Meeting.

One of our Advisers and his Team also had their work accepted and this is an excerpt:

Euthyroid athyreotic thyroid carcinoma patients (n=50) received 1.57 μg/kg per day l-T4 (IQR 1.40, 1.69), compared to 1.19 μg/kg per day (0.85,1.47) in autoimmune thyroiditis (P<0.01, n=76) and 1.08 μg/kg per day (0.82, 1.44) in patients operated on for benign disease (P< 0.01, n=80). Stratifying patients by deiodinase activity categories of <23, 23–29 and >29 nmol/s revealed an increasing FT3–FT4 dissociation; the poorest converters showed the lowest FT3 levels in spite of the highest dose and circulating FT4 (P<0.001). An l-T4-related FT3–TSH disjoint was also apparent; some patients with fully suppressed TSH failed to raise FT3 above the median level. These findings imply that thyroid hormone conversion efficiency is an important modulator of the biochemical response to l-T4; FT3 measurement may be an additional treatment target; and l-T4 dose escalation may have limited success to raise FT3 appropriately in some cases.

endocrineconnections.com/co...

shaws profile image
shawsAdministrator in reply to Michaela_l

Make sure he is sympathetic as many members have been disappointed with private endos and it was a waste of money. If you got the name from Thyroiduk.org.uk then, hopefully, he/she will be helpful.

Michaela_l profile image
Michaela_l in reply to shaws

I've emailed thryoid UK's admin I believe, I'm awaiting an answer..I'll message you the name.

shaws profile image
shawsAdministrator in reply to Michaela_l

That's fine then. He/she should be co-operative and knowledgeable.

Judithdalston profile image
Judithdalston

I sympathise, I was a secondary school teacher when diagnosed and just couldn't work at the level I had been able to years before. It was all very stressful, I changed jobs to more general education roll without same physical and emotional needs.

Michaela_l profile image
Michaela_l in reply to Judithdalston

I can't really go into anything else..I'm an operating department practitioner..so I deal with airway management, assisting with anaesthesia, surgical scrub, resus etc etc..very specialised job...not nursing, so I'm stuck! :/

fibrolinda profile image
fibrolinda

Everything grey goose said is right and that endo is a dangerous arrogant idiot.

Read and learn.

thyroiduk.org/tuk/about_the...

If you want to get private blood tests go via thyroid UK, medichecks or blue horizon are labs much used by members, including me.

TSH

FT3

Ft4

Antibodies

Folate

Ferritin

B12

And vitamin d are the recommended tests to see just what is going on and cost less than £100. Get them, post results on here and get actually knowledgeable advice so you can plan what to do.

If you really want to see a private endo please email Thyroid Uk for a list of thyroid endos, seeing another diabetes specialist would be a demolorising waste of money.

Also b12 needs to be top of the range, up to 1000+ . Optimal is needed not just 'in range'.

Ask ask and ask on here you have a lot to learn🙂

Michaela_l profile image
Michaela_l in reply to fibrolinda

Thank you. :) I've been told the one I'm going to see is good.

Michaela_l profile image
Michaela_l

I'm going to see a different consultant:)

Mamapea1 profile image
Mamapea1

Michaela_l ~ you've had brilliant advice from members on here👍please take it and don't allow ANY Dr make you question how you feel, or make you feel silly or small! You are hypo and THEY are stupid! And dispose of the antid's unopened, at the pharmacy.😊

NEVER accept the results are 'normal' either, about thyroid levels OR vitamins ~ always get copies to post on here. I was made extremely ill for years of my life by believing this ~ it's very dangerous, and the more ill you become, the more useless drugs you'll be given, and the more ill you'll become...... 😰.

Good luck 🍀 with your appointment, but you may still get more beneficial advice on here. 🌻🐝 xx

Michaela_l profile image
Michaela_l in reply to Mamapea1

Thank you :) I'm gonna keep taking my thyroxin. And hopefully the other consultant will have something else to say!

Mamapea1 profile image
Mamapea1 in reply to Michaela_l

Good for you! You're doing the right thing👍 ~ and even if it's a disappointing consultation, don't worry and don't lose heart ~ many people on here have ended up having to go it alone in order to regain their health.

If this should happen, you will receive all the necessary advice and support from knowledgable members. It's really not as scary as it might sound.✨

Yes, there's lots to learn, but worth it, because the knowledge will put you in control of your own health. Then you'll know for sure when they're bull💩ing you! 😊 ☀️🍄 xx

Michaela_l profile image
Michaela_l in reply to Mamapea1

Well I think he was anyways...when I first saw him briefly, I was an inpatient..my TSH was 22, and all he said was redo it in a month....that's it...with a TSH of that high, you'd think he'd look into it straight away..

Mamapea1 profile image
Mamapea1 in reply to Michaela_l

No I wouldn't think that at all tbh, not since I acquired copies of my medical notes, and saw that my TSH has been up to 52.2! ~ on that occasion, I was told "it's a little bit high" (I keep a diary) ~ this is after being on Levo for 10 years ~ with no output from my own thyroid!!

When I was pregnant with my youngest daughter, all through the whole pregnancy, my TSH went between 10.5 and 15.4 😨 This was never mentioned, and after 5 years of being on Levo, and with the same GP/specialists throughout! 😳

I have absolutely no idea how she survived, (many others didn't before diagnosis) but she did somehow, and she's a lovely girl 😊. So no, I wouldn't really trust them to act on high TSH levels in a way that we might expect them to.

I don't even think they've been adequately trained in thyroid disorders and after 25 years of being ill, I no longer feel I can rely on their advice.

I can honestly say my health has only improved since I found this forum💕and learnt from all the advice and links to studies, etc., from kind members. It has been an absolute life saver. I'm sure you will find the same. Take care and warmest wishes ✨🌟✨ xx

Michaela_l profile image
Michaela_l in reply to Mamapea1

Thank you and that's lovely:) it scares me, having children that is; I had a large part of my bowel (well, large for a 3pound baby lol) taken away, so I have some scar tissue, I'm hypertensive but can't go on labetalol during pregnancy due to asthma from having pnumonia as a child. A Dr I work with was saying the alternative, methyldopa, is going to give me a horrible time..and the fact I am at increased risk of an aneurysm due to an abnormal artery AND now this freaks me out! My mother, who had a kidney transplant before she became pregnant with me, blames this all on herself..it's not her fault of course, just unfortunate. This forum has made me feel better though. It's somewhat difficult to go against what drs and conventional medicine says; my job says listen to it! At least I'm able to read studies myself and have a say regarding my own health!

My nan said to me, while I was on coronary care, "do what they tell you", to which I replied"never!" And now I've found people who agree!

Hillwoman profile image
Hillwoman in reply to Mamapea1

Well said, Mamapea! :-)

shaws profile image
shawsAdministrator

Maybe even in the world as the 'ones trained before the introduction of blood tests have retired or died' I believe. Symptoms alone were sufficient for NDT to be prescribed.

Michaela_l profile image
Michaela_l in reply to shaws

Where do I find NDT?

shaws profile image
shawsAdministrator in reply to Michaela_l

Put up a new post Michaela_1 and ask for private messages to be sent to you of where to source NDT as no info is permitted on the open forum. There is one non-prescribed NDT but it might be too pricey as it comes from the USA but I'll give you a link anyway. It was made, specificially to not need a prescription and was made by Dr Lowe(he was an Adviser to TUK before his death) whose widow now deals with it.

naturalthyroidsolutions.com/

shaws profile image
shawsAdministrator

On re-reading your post and your miserable 25mcg of levo. You could try sourcing your own levothyroxine first and increasing your dose as many do fine on levo when they get to an optimal dose, i.e. one that relieves your symptoms and it cannot possibly be done with 25mcg of levo. We used to get larger doses when there were no blood tests but it was all about relief of symptoms.

Michaela_l profile image
Michaela_l in reply to shaws

Well it relieved my sinus tachycardia/arrhythmia mostly, it does still happen occasionally after eating...to which I was told, the two are unrelated....

shaws profile image
shawsAdministrator in reply to Michaela_l

Before I was diagnosed my heart played up and after I was given levothyroxine I was in and out of ambulances and the worst was in the middle of the night with palps. The Cardiologist couldn't figure it out.

As soon as I stopped levo and took T3, I haven't called an ambulance since and my heart is calm and relaxed. I also have had all symptoms resolved. I am not saying that this will work for everyone.

Michaela_l profile image
Michaela_l in reply to shaws

The point is, the fact he said it's unrelated..when I know it is...made me feel a fool and I couldn't even fight back with evidence based practice, or hard facts, because I just was....shot down.....he told me these are just things that change through phases........hmmm...ok.

shaws profile image
shawsAdministrator in reply to Michaela_l

They appear to know nothing at all except adjust doses up/down according to the TSH. Less than useless.

Michaela_l profile image
Michaela_l in reply to shaws

Well I'm not doing as he says, I'm staying on my 25mcg of levothyroxin... because even though he said it's unrelated..my heart has improved!

shaws profile image
shawsAdministrator in reply to Michaela_l

The brain and heart need the most T3 why don't they know this - it is very basic but they know absolutely nothing.

This is one woman's experience who took her case to the Scottish Parliament which is still ongoing:-

dailyrecord.co.uk/news/real...

Michaela_l profile image
Michaela_l in reply to shaws

Even I know this..I'm not saying I know more than a consultant, but it really made me feel silly...he said he reluctantly put me on 25mcg before (why did you then.....) but he wants me to stop because, to paraphrase, it will make my thyroid lazy..not his exact words, but there about..

shaws profile image
shawsAdministrator in reply to Michaela_l

They are stupid. No one improves on 25mcg and I think a low dose can backfire. This is a supplemental dose and we can feel worse when dose is too low.

Michaela_l profile image
Michaela_l in reply to shaws

My plan is to get a print out of bloods, see the other consultant, research NDT, and take it from there :)

shaws profile image
shawsAdministrator in reply to Michaela_l

Yes we have to look after ourselves. This is a past post from Lorraine Cleaver who took her case to the Scottish Parliament, it is still in progress and one of the MPs also takes T3.

healthunlocked.com/thyroidu...

thyroiduk.org.uk/tuk/TUK_PD...

Michaela_l profile image
Michaela_l in reply to shaws

Ok I'll have a read

Mamapea1 profile image
Mamapea1 in reply to Michaela_l

Well, it's HIM that's the fool! I have had exactly the same experience as shaws re heart problems, except mine started after being on thyroxine for a while. In and out of cardiology, constant tests ~ no definitive answers😕 ~ very stressful.

Then I started on T3 and although I am perhaps not yet optimally medicated (slowly increasing) it has been like a miracle🌟apart from an occasional hard heartbeat when I've just eaten, I'm cured!😊

I'm afraid they really don't understand the myriad of symptoms that being hypo can cause ~ this is just one reason why this forum works so well. We're all different in our needs and how we react to different meds and dosages, etc., but we also share many commonalities.

You will get to the bottom of your health issues and you may even be surprised to find things that you've been diagnosed with in the past become less evident when you're optimally medicated.

It has been a revelation to me to find that I don't have asthma OR COPD ~ I have been suffering from very shallow breathing caused by being hypo!💡I had always thought I didn't fit in with those dx, and that the four inhalers I had been given never really helped.

My problem has been that the Levo wasn't really working for me, even in large doses (300mcg), and so I was fighting a losing battle😨. The whole hypo thing is simple for some, but can get complicated for others.

There are many aspects to consider, especially vitamins and minerals, which can easily get depleted when hypo, and this can lead to serious problems. This happened to me ~ tests said 'in range'😕

Unfortunately, you will probably not be tested or treated adequately for these either, so you will have to take the responsibility for these yourself, to be on the safe side. Again, taking advice from here and getting my levels optimal has made a massive difference to my health. I hope you soon feel better, especially for your big day. 👰 xx

shaws profile image
shawsAdministrator in reply to Mamapea1

Some people have thyroid hormone resistance and the following is from TUK's Adviser (deceased). He himself took 150mcg T3 due to resistance. No endocrinologist in the UK or worldwide seems to be aware of such a thing but many are diagnosed with Fibro or CFS.

web.archive.org/web/2010103...

I have just been going through past things I've read and even at "The Endocrine Society 90th Annual General Meeting" in 2008 announced that "T3 can be be substituted for T4" and that was in June 2008.

As far back as 1999 in the New Journal of Medicine reported superior results so why haven't things progressed or is because it is mainly females who are affected that ALL of this research has been ignored and we've come no further forward at all.

In fact worse and desperate since in the UK they've withdrawn T3 altogether. Our UK Researchers also found the same that T3 was beneficial and paper was accepted last year.

It would seem Researchers come up against a brick wall (Dr. Lowe said it was due to corruption that levo has become No.1 prescription). The fact also that False statements were made by the BTA and RCoP about NDT and Dr Lowe's Rebuttal's request over three years for a response were ignored.

Michaela_l profile image
Michaela_l in reply to shaws

I read some studies a few weeks back, that suggestwd taking T3 rather than T4 can have a negative effect...but as with most things it seems, is down to the individual... Going in to get a print out of bloods today. Going to see what my T3 is... And possibly read more about deiodinases; I was having a quick read last night, about how selenium deficiency can cause issues with the deiodinase system and its role in autoi disease.

I don't get how they can totally ignored T3 results and say they don't matter!

Mamapea1 profile image
Mamapea1 in reply to shaws

I agree ~ corruption with a dash of misogyny for good measure!😨 x

Michaela_l profile image
Michaela_l in reply to Mamapea1

I know right! I'd love to feel normal! I'm scared I'm gonna collapse in my dress or something stupid...when this should just be fixable...shouldn't have to fight!

Mamapea1 profile image
Mamapea1 in reply to Michaela_l

I hope you won't worry too much re wedding.... stress can have a very detrimental effect on adrenals when you're hypo! Let's hope you're one of the lucky ones that regains their health with T4 alone, and are completely recovered for the big day and honeymoon.🙏

For some of us, it's not that simple, and we have to resort to sourcing our own T3 or NDT as these are our only options ~ we can't ever improve on T4 alone, as it results in increasing disability and an accumulation of other, hypo related illnesses. It simply does NOT, on it's own, cure our hypothyroidism at a cellular level.

There are many reasons for T4 failing, apart from genetic polymorphisms, gut issues causing malabsorption and vitamin deficiencies, resistance, other co-existing illnesses, etc.

If all the symptoms persist (or worsen) after all efforts have been made to rectify deficiencies, dosage, etc., then other alternatives need to be tried ~ to not do so results in much pain and suffering, and a very slow death from hypothyroidism, in many cases, with 'normal' serum results.

With these results, we are then diagnosed with ME/CFS/Fibromyalgia and are sent on a completely different medical journey, as these 'junk' diagnoses have little, if any, positive outcomes or treatment plans. We begin to gather other, serious, disorders...

There is then little hope for recovery, and in my case, my symptoms were exacerbated by a myriad of totally inappropriate, and somewhat dangerous meds, as I DIDN'T have those diseases, many of which were only born when the T4 protocol became the norm.

You were definitely correct in your suggestion that there is much that is 'individual' in thyroid disorders👍. For this very reason, successful treatment can not be confined to one particular form of medication, especially one that is, for many, a totally inappropriate and ineffective one!

As someone who has suffered like this for 25 years, occasionally managing to return to work, only to be floored by symptoms every now and then, and eventually having no career to go back to,(because of my 'ME' etc.) and now living in poverty at 60, having to rely on family members, with the only hope being selling the house that I spent my entire youth working to pay for, I have no interest in any studies or papers portraying T3 or NDT as dangerous ~ it is an individual issue, and these meds are life saving for some patients.

I'm afraid at some point, GPs and so called 'specialists' are going to have to sever their financial connections with Big Pharma, and start educating themselves re the varied presentations of thyroid symptoms, and treating them with appropriate meds, whatever that may be for the 'individual' patient to achieve euthyroid status re symptoms, not a reliance on serum levels and thyroxine alone.

Of course, at present this is a pipe dream due to the intrinsic nature of Big Pharma corruption and their industrial power, which inevitably leads to some of us having to procure our own suitable, and 'individually' effective meds from wherever we can. A stressful and far from acceptable situation, but necessary for those in this desperate position, and, like myself, trying to regain their previously good health.

Apologies for the slightly ranty nature of my reply, but the subject is very emotive for me, having suffered for so long, whilst entrusting assorted Drs and so called specialists to understand and treat my symptoms, and being so empirically let down.😨

This is why I hope you are well on adequate doses of T4 alone, as the journey for those like myself who aren't is hard and long, under the current medical specifications for treatment. The members of this forum are extremely knowledgeable and will advise you all the way, whatever the case.

My only regret is that I didn't find it earlier, but as I was assured repeatedly that my symptoms were NOT thyroid related, (serum levels said so), I spent years barking up other trees.😕

My life could have been very different.... just trying to explain why many on here may appear a bit maverick in obtaining alternative meds ~ but for them, it's essential for life, and not a lightly taken or easy decision.

I sincerely hope you're not one of us 😊 and you soon get sufficient meds to regain your health quickly via the easier, more conventional route, and in good time for your wedding. 🌻🐝 xx

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