Just back from a consultant and feeling confused and scared. Not all there at mo so sorry in advance for getting mixed up.
I’ve been told I need to come off T3 and go on high dose T4 ( poss 500/800 mcg) because I don’t covert T3 in my brain it needs to be high to “pushed through”. What does this mean? I assumed if I don’t convert then getting the active T3 would do the job. Also told I need TMS to treat the TSH and help with anxiety.
Any thoughts would be much appreciated especially if you have had success with TMS for thyroid related mental disorders.
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Putneyhorse
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Thanks so much for responding. Feeling really desperate and No not a typo.
Long story short I’m on T4 50mcg and T3 ( self sourced but recommended by an endo) about 10/25 mcg depending on how I feel. I still feel symptoms but much better than when I was on T4 alone but I assumed it was about getting correct ratio and dose. I didn’t expect such an extreme treatment plan.
Hi Putneyhorse. Have you confused T3 and T4 in your post? Did they really say 500-800? I have to say, if an endo said any of that to you, I suggest you run away as fast as your hypothyroid legs can carry you. There is often, it seems, a fine line between an endo and a lunatic and yours has crossed it! 😱
Thanks for responding. No haven’t crossed my T’s. He said he had lots of success with treating thyroid related mental disorders on very high T4. He also said I should go up by 50mcg a week till I reached at least 500 then would consider going up to 800. I’m scared as I’m very sensitive to any change so I make is normally 25 over a much longer period.
So confused as I’m not well and want to be better but I’m having to question the so called experts and with brain fog that isn’t easy.
Thanks missGrace. I wish it was that easy. Not much money and tried 3 different endos in a year. And I really thought this high flyer would have the answers.
"TMS has been approved by NICE (2015) as an effective and safe treatment in the UK for the treatment of Depression" smarttms.co.uk/
Are you suffering from depression? Is so, has your Endo referred you to a professional who can properly diagnose mental health conditions? Endo's are not qualified to assess mental health.
TMS is not going to correct thyroid imbalance or vitamin deficiencies or absorption disorders all of which can be present along with thyroid disease. Have you had all of these possibilities investigated and excluded?
I’ve been told I need to come off T3 and go on high dose T4 ( poss 500/800 mcg) because I don’t covert T3 in my brain it needs to be high to “pushed through”. What does this mean? Yes, quite, what does it mean? Did you Endo mean that you were to take 500/800mcg of LT4 (Levothyroxine) on one day for the week?? If so, is the Endo suggesting you are non-compliant with your thyroid medication?
The advice given by your Endocrinologist doesn't sound helpful to my way of thinking but then I'm not a medical professional, just someone who's lived with a thyroid condition for over 10 years.
ok. It was difficult to sum up everything in original post.I went to recommended endo. He has referred me to a psychiatrist who deals with thyroid related depression and anxiety. Together they have told me this plan. They say that rTMS combined with high does T4 breaks through to the brain. I’m sorry I can’t be more sinsinct. I was feeling quite stressed so should have asked more questions.
The aim of thyroid medication is to be symptom free so if your thyroid medication is optimal and you still have symptoms then ask your NHS GP to investigate other possible physical reasons.
There shouldn't be thyroid related depression, as, when correctly treated you should be symptom free.
People can have depression as a separate condition. Terrible care and treatment can make you feel depressed but that will clear up when you dump the awful so called professionals with dodgy ideas.
Definitely do not take such a high dose of Levothyroxine. Overtreatment may cause lasting adverse affects. I think what they are proposing is dangerous.
This is very confusing and worrying, PH, and I'm not sure what to make of it. It doesn't make any sense.
- if you can't convert T4 to T3, then what you need is to take T3.
- I presume they are buying into the old mythe that T3 can't cross the blood-brain barrier, which is not true. But, what makes them thing that thyroid hormone isn't getting into the brain? How did they make the decision that what you needed what 800 mcg levo and TMS treatment?
- how is TMS supposed to 'treat' the TSH? Do you have a pituitary problem? Have you had a brain scan?
- Do you have any lab test results you can share to help us get to the bottom of this?
- is the doctor that told you all this actually an endo? or what is he?
- and last but not least: do they have the least little idea what the hell they're talking about?
because I don’t covert T3 in my brain it needs to be high to “pushed through”. What does this mean?
How do they know that you don't convert T3 in your brain? Convert it into what? T3 converts to T2, does your brain need T2? If they know that then they know something no-one else knows. It's T4 that converts to T3. So, how are they planning to 'push' it through? What does this mean'? Nothing at all, as far as I'm concerned! I find this all very, very scary.
I did say if I don’t convert then obviously it makes sense to take T3. But he ( I’m sorry to say I didn’t argue, I’m weak) told me about neurotransmitters that can’t use active T3 and Very high dose T4 was the answer.
I feel so sick because it seems I’ve sent more money on a blind alley. I really did think we had found someone that knew what they were talking about.
Don’t beat yourself up about this, your being too hard on yourself.
I don’t want to sound like a broken record as the regulars have heard my story, but,
I went to see a private Endocrinologist, he had even wrote a book on Hashimoto’s and thyroid conditions, and was known as a professor. I thought I had found an expert.
Well, after he diagnosed me with Hashimoto’s and going back and forth with blood tests on my vitamins levels for months, and, still not any better I began to question his work.
This is when I came across this forum.
I then suggested private bloods for all my thyroid levels as he only tested TSH, never T3 & T4, he thought that was a fantastic idea.
I mentioned T3 medication and NDT. He told me is was very unsafe.
This also set alarm bells ringing, an Endocrinologist that doesn’t think T3 is important or open to other medication other than T4.
Anyway, my thyroid was struggling as it was 6, but he said that no thyroid medication would help.
I soon parted company with him after spending hundreds of pounds on him and not improving, to add insult to injury he even wanted me to travel to London to see his colleague in case he had missed something.
Err, yes my TSH is 6 so it’s struggling hence why I’m not well. I didn’t know all of this until after my endless visits to see him.
To cut a long story short, and getting worse my GP stepped in when my TSH reached 12.2 and I started on Levothyroxine.
I didn’t get on with Levothyroxine and started self medicating.
My point is that just because they are suppose to be specialist in this area, doesn’t mean they always know best.
I’m no expert, and it’s up to you what you do, but, I would not be taking the high dosage of Levothyroxine he has suggested.
You are not weak, you feel ill and are desperate for answers, I can relate to that.
However, it’s your health, and your life. You don’t have to answer to any of them. Greygoose (they have replied already to you) talks a lot of sense as does SeasideSusie and has helped me no end.
Why don’t you try T3 only take it very very slow.
Paul Robinson has written several books on self medicating, one book briefly explains self medicating with T4, T3, and NDT and another book is T3 only. You can buy the books from Amazon.
OMG! Your reply made me cry. Thank you so much for your encouragement. I wish I was able to recall all the info he gave me but I just latched on those that seemed wrong. Guess it’s just another bad day in the thyroid office. Health and love to you. X
Oh, gosh, if I could recuperate all the money I've spent on quacks, looking for answers, I'd have a comfortable retirement, now! But, we're desperate people, willing to try anything to get well. And all that because our regular doctors are too b****y ignorant to care.
I've been held up-side down, had stones placed all over me, lights shone on me and fleurs de Bach shoved up my nose! None of it helped, but cost me a small fortune! It's not your fault, It's the system that allows sick people to go without proper treatment and charlatans to flourish.
And, of course you're weak, you're sick. And it takes a lot of strength to stand up to these con men - to regular doctors, too. They all exude an air of being right and knowing what they're talking about, and we're not educated enough to have the confidence to say no. And, I'm so glad you came on here to check up on all this, because maybe we can help you. And maybe your experience will help others to say no.
So, don't blame yourself. Just chalk it up to experience and put it all behind you. And let's start again from scratch. Post a new post with all your details - blood test results, ranges, dates, symptoms, anything you can think of, and let's see if we can make you well. x
To state the obvious and to echo others, this is very bizarre and worrying on a number of fronts. Even if appropriate for you, TSM is not without its risks. I hesitate to comment, as of course we don't know you or what the psychiatrist has identified in your situation such that he's making the TSM recommendation; but it seems from what you have said, that you have been in some way sucked into a situation whereby two professionals are colluding in making plans about you rather than with you. As a minimum I would urge you to make no decisions until you've been provided with a written report & recommendations from both the Endo (is he definitely an Endo?) and the phsychiatrist; and had time to think it through. If both were consulted on a private basis I would ask for a double appointment with my NHS GP to talk things through - maybe even asking for an NHS Endo referral, and an appt with the local mental health team - second opinions, as it were. The NICE guidance on TSM is not encouraging to my mind, and speaking for myself I'd have particular regard to "1.2 During the consent process, clinicians should, in particular, inform patients about the other treatment options available, and make sure that patients understand the possibility the procedure may not give them benefit".
Regarding the thyroid aspects though, I wonder if diogenes might be better able to throw any light on the Endo treatment plan recommended to you, and the assertions made.
Thanks Maisiegrey, lots of interesting points that I will consider. I suppose i felt that after diagnosed I would be given a pill or treatment and everything would go back to normal but life’s not that easy I guess. God forbid I might have to do some work😳.
I’m the only person in my family with a thyroid issue and I thought it was genetic. Has there ever been a survey about potential causes?
MaisieGray might not see this reply, because you didn't click on the blue 'Reply' button. But, I've alerted her.
There are lots of potential causes for hypothyroidism. Autoimmune thyroiditis is often genetic, but not always. But, it can be caused by things like a blow to the head, or a whip-lash injury, or by endocrine disruptors in pharmaceuticals, the air or water, or even our food. Very often we never find out why. But, the treatment is always the same: thyroid hormoner replacement of one kind or another.
Putneyhorse it can also be said to be familial, ie it occurs more often in family members than is expected by chance alone; & one of the reasons for that can be environmental as greygoose said. As far as I know though, like you, I am the only one in my family to have (non-autoimmune) hypothyroidism. But thinking about it, my Mum used to work for a small leather goods manufacturer, so presumably was inhaling chemicals used in the tanning of leather, before I was born; and then afterwards, I used to walk from school to her workplace and hang out with the lovely workers being spoiled rotten until it was time to go home - so who knows if that had an effect either on my Mum which impacted me, or on me directly. I've never really bothered with the "why" though, to be honest. Meanwhile, I hope you can get a good night's sleep and wake refreshed to process it more calmly tomorrow. Don't feel you are alone, or that you should allow yourself to be pressured into making any decisions - everything said to you by those Drs is just their opinion, and not anything you have to comply with if you don't think it is in your best interest.
I believe if you have TMS it would be private? My understanding is that a lot of sessions are required and as such it would be VERY expensive (£1000s I believe?) unless you have insurance coverage. Also I believe it doesn't work for a lot of people but you'd need to research that.
I'm sceptical and if I were you I would research carefully, especially if self funding.
I've also only every come across it in the context of depression where its a very new treatment and not widely used yet.
It sounds like dubious. If you don't convert T4 to T3, you need T3, not more useless T4, which will probably convert to rT3 at those levels. If you have thyroid hormone resistance, you need T3. Never heard of TMS, what is it? Why treat TSH,? It changes in response to the level of thyroid hormones in the body, or it doesn't change because there is problem in the pituitary or hypothalamus (and apart from surgery if there is an adenoma) I don't think they know how to fix that. I'd want some good science before believing in any of this
Dear Putneyhorse, what a horrid situation for you, but, I am going to go right against the grain now and suggest that you contact the psychiatrist and endo and ask them to put in writing to you what their plan is, explaining that you can't remember, and, as if they would please explain how it ought to work.
Please, don't give up on them.. I used to work in a Psychiatric Hospital and patients with underactive thyroid were often referred to us (in error) but then treated and helped to recover. There is cross-over and psychiatrists are often brilliant because they have to be fully qualified doctors before becoming psychiatrists, so they are knowledgeable and experienced across the board.
I think it would be a shame for you to turn your back on what has been offered just because people on here, who are not medically qualified, though all very well-meaning and kind, have not come across this before.
If you get an explanation you might find they made an error in what they said, or, that there is an excellent reason for their proposed plan and perhaps evidence that it will work - evidence-based medicine usually prevails.
Please don't worry, you will get better given all the help and advice on this site, but it is worth listening carefully to the medics as well.
@ thyr01d - I am really surprised how you can recommend that she 'trusts' the medical profession and head their advice?! If she thought that what she received was a sensible option, she would not have had the need to come onto this site to seek advice!
And you don't need to be a medical professional to see that a recommendation of 500-800mcg levothyroxine to 'push' through to the brain is medically as well as scientifically utter nonsense.
In addition, under-treatment of hypothyroidism is strongly connected to depression and anxiety. If your treatment is at optimal levels, this should rectify itself but treating depression without the underlying cause will certainly not make things better.
And even if psychiatrists are fully qualified doctors, if they don't acknowledge that the cause of the depression/anxiety is the underlying thyroid disorder and just treat the depression, then she will also not get better. And you don't need to be medically qualified to work that one out, sorry.
I would also suggest PH seeks a second opinion on this and like others have suggested get the treatment plan in writing, so you can exactly see what they propose. And also ask them where they are basing their recommendations on.
Hey all. Thanks for all your support. I’ll definitely take your advice and get them to write down their diagnosis and plan - not sure if i’m allowed to share it here but will get back to you. As greygoose suggests I’ll put the blood results up here (just about to do another set of blood tests). X
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