Lost all hope....: Hello, I haven't posted on... - Thyroid UK

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Lost all hope....

Bellerin profile image
87 Replies

Hello,

I haven't posted on here for ages. I hope everyone is doing well.

I have finally lost all hope of ever getting better. I still fell as awful as I did before taking any medication. I have been to see Dr P back end of last year, and even the medication he prescribed has made no difference, and I hope he can get better, but I don't hold out any hope of ever seeing him again to try and get to the bottom of what's wrong.

I just feel hopeless, I am on T3, Adrenavive & Metavive, and still can't seem to see any light at the end of the tunnel. I was diagnosed with underactive thyroid over 4 years ago, and no medication, has ever made any difference at all. I have a list of symptoms as long as your arm, and its still growing. I also got diagnosed with Fibro last year (but of course given nothing to help with it) and I have coeliac disease and anorexia, both of which I have had for many years.

Sorry for such a depressing post, but I just don't see any point in anything anymore, I just cry all the time which wears me out even more (crying as a write this post) and I can't remember the last time I smiled. When I see a GP, I am sure they look at my record and just think I am a hypochondriac and just tell me to take anti-pressants or anti-anxiety meds, as I am just so stressed and upset all the time.

I am debating just stopping all my medication and let things be. I can't afford to have any private blood tests and I know my GP's wont do any, so now I am just resigned to being ill & unhappy.

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Bellerin profile image
Bellerin
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87 Replies
beh1 profile image
beh1

With anorexia you are probably having trouble keeping your nutrient levels up. Yet these are vital to wellbeing. I hope you are being provided with appropriate treatment for this condition.

Bellerin profile image
Bellerin in reply to beh1

I've had Anorexia for many years, (and unbelievably even with being admitted to hospital a few times) out of hospital, I have never been given any kind of medications or vitamins etc. I try to take magnesium for my muscles cramping & restless legs, and I take Biotin for my hair, skin and nails, but not anything else. Strangely though when I last had a blood test, my Vitamin D was very high! Not sure how that happened! I receive therapist help with my Anorexia, but not any medical. I never can see the same GP twice where I live!

whispers profile image
whispers in reply to Bellerin

you can request an appintment with the same gp if you find one that works well alongside you, it may mean you have to wait a little longer to be seen but you have that right to see who you want! I'm unlucky that there is o ly one gp in my oractise who isn't really helpful so I am looking to change, I am lucky that there are two other practices I could join though they are both a bit of a journey away. Can you get any test results you have and post them, the people on this site will help you all they can

Angel_of_the_North profile image
Angel_of_the_North in reply to Bellerin

Don't forget that biotin makes your thyroid test results invalid. Need to stop of at least 5 days before bloods.

Bellerin profile image
Bellerin in reply to Angel_of_the_North

Thank you - yes I read somewhere that it interferes with them, but wasn't sure how long to live them out my system. Thank you :)

Mamapea1 profile image
Mamapea1

Please don't give up hope! Your pharmaceuticaly trained Dr is seriously letting you down by not regularly testing your vitamins/minerals, which could be depleted by anorexia or hypothyroidism ~ what are they thinking? Thyroid hormones won't work unless they are optimal.

Don't worry about what they write about you ~ they do it because most of them have no idea how the body really works ~ just how to prescribe various meds that they get a payback for. My GP had me shaking like leaf a while ago when I read the crap she had written ~ it's not worth it ~ she was useless anyway.😕

Post recent results on here so the knowledgable ones can comment, there must be an answer to all this. I've never had anorexia, it must be an added torment for you, but I once cried cried constantly for 2 years ~ seriously ~ every waking moment I cried and I couldn't stop. I had a period of chronic emotional stress, and being hypo, it compounded my distress, and that was the result.😥

It drove my family mad! They couldn't understand why I couldn't stop even when shopping or at the school, etc., as I had never been like that before. I am conscious, even now, of avoiding anything that may 'start me off' in case it happens again, such is my emotional lability. I wish you the best of luck in finding out what is making you feel so ill ✨(((Hugs)))✨💕 xx

Bellerin profile image
Bellerin in reply to Mamapea1

Sorry to hear you were so upset at one time. Feel for you so much :) When I last had my cortisol tested it was sky high, and I have been under chronic stress for so long, I'm not sure I know how I am with out it!

Thank you for your kind words, they mean a lot

Belle xxxx

Naomi8 profile image
Naomi8

I had been on thyroxine for many years,when I went to see Dr P.I went because I was suffering from anxiety & depression.It didn't help & later I was prescribed T3 by the NHS.That didn't stop me relapsing into acute anxiety & depression again after 2 good years of better energy & mood.So a year ago in January I asked my GP to prescribe the antidepressant Sertraline.I have been on a low dose for a year & have now been able to very slowly reduce even further.I've probably had the best 18 months for a very very long time,moodwise.

Bellerin profile image
Bellerin in reply to Naomi8

Thank you, I think I will have to think about something like that. I will talk to my ED nurse therapist and psychiatrist to see what the recommend, but I will definitely see what they say about Sertraline. Thanks again.

Naomi8 profile image
Naomi8 in reply to Bellerin

I have tried everything recommended for anxiety & depression associated with an underactive thyroid condition-Dr P,T3,natural progesterone,herbs,supplements,adaptogens,5HTP,yoga,mindfulness meditation,12 step anonymous groups.I even self-medicated with SAMe successfully for depression with anxiety. SAMe didn't work this time.

I have a mental health condition that requires treatment.I have had problems with anxiety & depression since a toddler.SSRIs worked for me.I resisted trying them previously.This time the thought of another 2 years of misery with constant suicidal thoughts,like last time,was too much to cope with.

I can now enjoy my yoga,meditation,reading & socialising again.

ShinyB profile image
ShinyB

I'm sorry you're feeling so hopeless. I'm still working my way through the hypothyroid maze myself. I have suffered with depression since my early teens and have recently been through another bout of it. I don't know all the answers by a long chalk, but the latest thing I am looking at is oestrogen dominance, which can affect how well thyroid hormones work in the body.

It's early days of taking natural progesterone but it seems to be making a difference to how I'm feeling.

I found this link helpful: hypothyroidmom.com/progeste... - two extracts from it are:

. Thyroid Function: Progesterone promotes assimilation of thyroid hormone into the cells, which allows your thyroid to work properly and give you energy. Research concluded that progesterone therapy increases free thyroxine (T4).(8)

. Moods, Anxiety, and Depression: Progesterone acts as a natural antidepressant, enhances mood and relieves anxiety. It also relieves postpartum depression, which is caused by the drastic drop in progesterone after childbirth. Research shows that progesterone showed a significant improvement in symptoms relating to tension, mood swings, irritability, and anxiety, and confirms the alleviation of some PMS symptoms relating to anxiety and irritability with progesterone.(19) Previous studies have shown that progesterone treatment in ovariectomized rats produces an anti-anxiety response similar to that observed after the administration of benzodiazepine compounds.(20) Progesterone produces a clear dose-dependent anti-anxiety response. These results demonstrate that progesterone shows the highest anti-anxiety potency when compared with all steroids evaluated (21)

I thought I would mention it in case it helps you. I know how frustrating it can be to have all these puzzles to solve on this path, and how despairing it can make you feel. Keep talking to people and actually well done on voicing what you're feeling and reaching out.

Sending you a gentle hug xx

Bellerin profile image
Bellerin in reply to ShinyB

Thank you for the kind words. It just all gets a bit much sometimes doesn't it? I was on anti-depressants whilst I was in my first eating disorder unit, and I am loathed to go on them again, but it is something to think about.

I am not sure about my hormones, my periods are all over the place!! I didn't have a single period for around 12 years, whilst being severely underweight, so when I started putting weight on rapidly about 4 years ago - then my periods came back. I have been awful!!! Severe pain, migraines every day for a week, and sometimes bleeding for 10 days straight - or only have a period every 2-3 months. Very inconsistent. I when to my GP and they just blames the anorexia and said eventually would settle down!! :( So wondering if progesterone would help, but not sure how to go about finding out if its an issue? What did you do? Again, thank you very much for your lovely words & hope you are doing well xxxx

ShinyB profile image
ShinyB in reply to Bellerin

Hi sweetheart, I'm still learning about all the hormones and how they interact in the body (and having brain fog is not helping lol) but there is a connection between thyroid hormones, cortisol and the sex hormones. I think I'm right in saying that cortisol is made from progesterone, and the body will prioritise cortisol production over progesterone, so it's easy for your progesterone levels to literally plummet and be stripped away by cortisol production.

I've never had any 'in depth' help from a GP. They just give you a medicine for a symptom, rather than really look at underlying causes. An eating disorder affects your body in many ways and saying it would all just settle down makes me cross!

I paid for a progesterone & oestrogen test via medichecks.com but you may well be able to get this tested via your GP, particularly with how your periods are all over the place. Ask if they will test them for you. Ask for a copy of the results. I'd suggest you also ask them to check your cortisol and DHEA. If they don't prioritise these tests for you, are you in a position to be able to pay privately for them? We can talk more when you've found out whether you can get tested via your GP. I'm just conscious of not overloading you with information when you're feeling this low.

Are you taking just T3, Bellerin, or are you still taking any levothyroxine? When the body is under a lot of stress, it's common for T4 (which is what levo is) to get converted to rT3 instead, which can cause problems too.

Hang in there. And reach out whenever you need to.

Hugs xx

Bellerin profile image
Bellerin in reply to ShinyB

You are far, far too kind. Thank you for your responses :) I just feel that it is so complicated, that I will never understand it! I was never the smartest person & the brain fog is making things even worse.

I will try to look at having my progesterone & oestrogen tested soon as I can afford it, and then probably my cortisol. I had my cortisol tested about 2 years go and it was sky high, so I probably should test it again to see where its out now. Also when I checked my RT3 that was really high as well, but not sure how on earth to get either of them down!

No, I was prescribed Levo to start with, but I now just take T3 and then Adrenavive & Metavive that I was told to take by Dr P

Thank you again xxx

ShinyB profile image
ShinyB in reply to Bellerin

You and me both about feeling we'll never understand it! My brain seems to have gone AWOL! And you get some people who just seem to spout thyroid facts and write huge essays about deiodinases (I just had to look up how to even spell that one, let alone pretend to know anything about it lol) and I'm there reading and re-reading the same single sentence, trying to make sense of it....

All we can do is take it a step at a time and try to muddle our way through :)

How much T3 are you currently taking and at what times of day, and how long is it since you stopped taking Levo?

Bellerin profile image
Bellerin in reply to ShinyB

Thank you!! Makes me feel a little better now!!!

I take 1 and a half tablets of 25 mcg of T3 per day, first thing in the morning, an hour before eating ( although, I don't eat in the morning, but I do take it way before any food) and I stopped all my Levo, probably about a year ago. I was on at the highest 150mcg but I wasn't on that long, before weaning myself off it, whilst slowly upping my T3, I've been my same T3 dose since the beginning of the year.

xxxxxx

ShinyB profile image
ShinyB in reply to Bellerin

Good :) Solidarity, sista! :D

I would guess that your rT3 should have come down by now, if you've not taken T4 for a year and are taking just T3. It's only T4 that converts to rT3, and T3 helps to reduce rT3. Kell-E is interested in rT3 so have tagged her in case she has anything to add :)

Maybe you need a dose increase of T3? Have you experimented with taking smaller doses more often, rather than all in one go?

A lot of this thyroid path does seem to be guesswork and trying different things and finding what works for you.

xxx

Bellerin profile image
Bellerin in reply to ShinyB

No, I take my dose once in the morning, so it maybe worth looking at changing it to later in two doses.

Can I just ask ShinyB, what exactly is the test you are having and where from to test your progesterone & oestrogen tested? I am unsure which tests to have? Thank you my lovely :) xx

ShinyB profile image
ShinyB in reply to Bellerin

medichecks.com/tests/hormon... is the basic one I got done. Keep an eye on prices for it as medichecks often have special offers. I sent you a PM with some info too, did you see it? I'd have a read of that first :)

I would ask your GP first though as that will save you some money. Tell them your hormonal symptoms and recent history with your periods.

Hope you've had a better day today :) xxx

Bellerin profile image
Bellerin in reply to ShinyB

Thank you :) I will try to have a read of what you sent :) Just a question - you can reply in a pm if you need to, but is the person you are conversing with, in the UK? I'm in the UK, but I know the forum is worldwide so I like to just check! Thank you again xxxx

ShinyB profile image
ShinyB in reply to Bellerin

Well I'm in the UK. I'm not sure how you'd know for any particular sender, bar asking them.

Oh! Doh! I've just twigged what you mean haha. Yes he is!

Ow, my poor brain lol. xx

Bellerin profile image
Bellerin in reply to ShinyB

Thank you!!! Your brain is still working faaaaaarrrrr better than mine at the moment!! xxx lol

ShinyB profile image
ShinyB in reply to Bellerin

Actually it's behaving quite well tonight!! Some of the approaches I'm throwing at it must be starting to work... lol :D

Kell-E profile image
Kell-E in reply to Bellerin

Does Metavive have any T4 in it? If so I would stop taking it. I would try increasing T3 because ideally you want to get the T3 you take to suppress you body's own production of T4 so that it is not converted to large amounts of rT3.

Bellerin profile image
Bellerin in reply to Kell-E

Hello Kell-E, I am not sure if the Metavive has T4 in or not, it just says that it is natural porcine thyroid gland, so I am guessing it does. I'm nearly due to get some more, so ill leave them off for a bit and see how I go :) Thank you for the info, you are very kind xx

ShinyB profile image
ShinyB in reply to Bellerin

Yes it would have some T4 in then. You might need to increase your T3 then if you stop taking something that's got T4 in it. I'm not too sure. What does it state on the label on the Metavive?

Bellerin profile image
Bellerin in reply to ShinyB

I'm going to try to copy what is on the website blub for the packaging -

Metavive II contains 30mg of freeze-dried Porcine Thyroid Gland per capsule. Ingredients:

Each capsule contains: Porcine Thyroid Gland 30mg; Certified Organic Rice Flour; Vegetable Cellulose Capsule.

This is what it says on my bottle as well :) I have only just increased my T3 from 1 x 25mcg of T3, to the 1.5 tablets a day, so I may add in a quarter tablet in later in the day. xxxx

ShinyB profile image
ShinyB in reply to Bellerin

Hi, I've just found some info on this thread: healthunlocked.com/thyroidu... At the bottom, the original poster says to PM her your email address if you want the content info, that she managed to track down :)

From what I understand, it's going to be similar in T4/T3 content to NDT, but because it's sold as a 'supplement' they are not allowed to state what it contains. Kell-E you take NDT too - what's the typical T4/T3 content?

Kell-E profile image
Kell-E in reply to ShinyB

38mcg T4 and 9mcg T3 per 1 grain. 1 grain tabs are about 60mg in weight considering the fillers. I wonder if the 30mg tabs are equivalent to half a grain?

Bellerin profile image
Bellerin in reply to Kell-E

Dr P wanted me to transfer total over to the Metavive and get rid of the T3 totally eventually, but I was due to go back and see he to discus the fact it wasn't working, when he sadly became poorly :( xxxx

Kell-E profile image
Kell-E in reply to Bellerin

Well, if it has active T4 in it, then I say dump it. If it doesn't have active hormones in it, I say dump it. So it is unanimous :)

Seriously, get rid of sources of rT3 (T4) and increase your T3 until you feel better.

Bellerin profile image
Bellerin in reply to Kell-E

Should I have a test for my RT3 levels before or not? Or just dump it anyways? xxxxx

Kell-E profile image
Kell-E in reply to Bellerin

I would ditch it anyways. If you have an eating disorder then it is pretty much a foregone conclusion that your T4 to T3 conversion is bad. You can certainly test rT3 if you want, but I understand it is expensive. Based on what you've written, it is no doubt an issue.

marigold22 profile image
marigold22 in reply to Bellerin

If you dump everything except the T3, the rT3 will work itself out of your body. I never had an rT3 test; probably a waste of money if you can;t get the test on the NHS.

marigold22 profile image
marigold22 in reply to Kell-E

I would agree, dump everything except the T3. And as I've said in my reply below, you may need to increase your T3 dose. I've asked on here previously what dose of T3 members are on... some said 60mcg a day. I'm 5ft zero, weigh 7.5 stone and 40mcg a day seems to be ok for me.

ShinyB profile image
ShinyB in reply to Bellerin

I'd heard he is unwell, poor man. I'm no expert but I would be inclined to stop all T4 until you know you've cleared any excess rT3. You said it was high, did you say what the actual test result was? I can't remember and I've just tried to scroll back up to check but got lost in all the replies lol. I'd also try those details I pm'd you, as he is far more experienced/knowledgeable than I am.

Bellerin profile image
Bellerin in reply to ShinyB

Sorry - just another little message ( you do not know how grateful I am for both yours & Kell-E 's input - literally saving my life atm!)

This was my last result I had done, last June 2017

REVERSE T3 22 ng/dL (10.00 - 24.00)

REVERSE T3 RATIO 25.09 (15.01 - 75.00)

Don't know if this helps in any way xxx

ShinyB profile image
ShinyB in reply to Bellerin

Well my rT3 was 'only' 16 and it caused me problems so that when I kept increasing my T4 to try to raise my T3, I felt really really really awful. If you're having problems converting T4 to T3, it will get converted to rT3 instead (that's my understanding, anyway.)

I've read somewhere (sorry i can't recall where now) that anything over 15 will be problematic.

Do you have a fT4 and fT3 result done at the same time?

Kell-E just tagging you as you won't have got a notification for this one.

Kell-E profile image
Kell-E in reply to Bellerin

I looked back at your results. The whole thing was:

FREE THYROXINE 11.44 pmol/L (12.00 - 22.00)

FREE T3 8.48 pmol/L (3.10 - 6.80)

REVERSE T3 22 ng/dL (10.00 - 24.00)

REVERSE T3 RATIO 25.09 (15.01 - 75.00)

So, your T3/rT3 ratio looks decent, but to have an rT3 of 22 with an under range T4 is curious. If rT3 does not actually block receptors but interferes with T3 in other ways it can certainly be bogging things down, ratio aside.

Like ShinyB mentioned, anything over 15 is considered potentially problematic.

So much rT3 can create a form of cellular resistance, as evidenced by your over the top fT3 and still having hypo symptoms. Paul Robinson said in an interview that he cannot take 25mcg of T4 for more than 3 days without all his hypo symptoms returning.

You may be one of those people who feels horrible on any amount of T4.

Bellerin profile image
Bellerin in reply to Kell-E

Yes, I had only just started taking T3 when I had those tested and since then, I have got rid of my Levo completed and just been on T3 only. But since September I have been taking the Metavive - which as we have discussed, has quite a lot of T4 in, so maybe, just cutting that out may help do you think?

Kell-E profile image
Kell-E in reply to Bellerin

Yes, I think it will help! But it also has some T3 in it, so you may need to up your T3 dose. It is hard to say...eliminate the Metavive and see how you feel. Add T3 if your pulse and temps aren't up to par.

Kell-E profile image
Kell-E in reply to Bellerin

And above all else, hang in there! This is like 25 consults all in one day, lol...

Exciting but tiring :)

Bellerin profile image
Bellerin in reply to Kell-E

Thank you! Everyone on here has been so helpful with their knowledge and their time. It means a great deal.

ShinyB profile image
ShinyB in reply to Kell-E

Maths is not my strong point lol, but ratio wise it's going to be similar I guess, so a lot of T4 still!

Bellerin profile image
Bellerin in reply to ShinyB

Erm, totally confused about everything now! Even more lost than ever about what's the best way forward.......

ShinyB profile image
ShinyB in reply to Bellerin

I'm having trouble keeping up on this thread myself!!! but you've had some other replies re next steps. Let me know if you're unsure after you've read them :) xxx

Bellerin profile image
Bellerin in reply to ShinyB

Thank you I have sent her a message about my email, and ill let you know what she says :) xxxx

Kell-E profile image
Kell-E in reply to Bellerin

I would think it does have T4.

ShootingStars profile image
ShootingStars

Hi! No, please don't loose all hope! You can and will feel good again once you get the right medication, the right dosage, I, and many other people on this site and elsewhere in the world have had the exact same feeling that you are having when we felt hopeless about our hypothyroidism and how it was effecting our life at the time.

Without your results for FT3, FT4, TSH, and antibodies TPOab and TGab, plus the lab ranges for each, there's no clue as to why you aren't feeling well. When you say your D is "very high", how high and what is the lab range? Vitamin D toxicity is very real and it can make you very sick. What does your diet consist of?

Please don't stop all medication. Things will probably get much, much worse if you do and then it will take that much longer to ever be well again.

Bellerin profile image
Bellerin in reply to ShootingStars

Thank you, hopefully I will save up to get some more private blood tests done and then I will post them :)

I still eat very little (despite my weight, I am still anorexic in every other way) I just eat vegetables so not sure how my Vitamin D is so high, but I am receiving treatment for a liver condition, so I was told that they might be connected. :)

talkingsense profile image
talkingsense

I'm sure eating a healthy balanced diet will help with all your issues. No medication is going to solve the effects a lack of nutrition has on the body.

ShootingStars profile image
ShootingStars

You probably don't want to do that. You don't want to take extra iodine above your recommended daily dietary allowance if you are hypothyroid, have Hashimoto's, are hyperthyroid, or if you have Graves Disease. It will make you more sick. Either more hypo or more hyper, depending on the type of thyroid disease you have.

There have been several people recently who for some reason thought they could cure their thyroid disease with iodine, so they took large amounts of daily iodine, some for years. They became very sick and wondered why they are so severely hypo, and or why their thyroid antibodies were so high.

The recommended daily dietary allowance is 150 mcg iodine for an adult female. This is easily obtained in most modern diets. Your body needs iodine to function properly. Only in limitations, not in excess. You should get adequate amounts in your diet, so no iodine supplements are necessary. People start popping iodine pills without understanding how easily they can permanently damage their thyroid and permanently ruin their bodies! Excess iodine is in the ranges of 800 - 1,1000 mcg. Anyone with a thyroid disease should not risk the damage of taking excess iodine.

Why? If you're hypo, excess iodine will reduce the amount of thyroid hormones your thyroid can produce and it will make you even more hypo. Excess iodine is also thought to be a possible trigger for Hashimoto's. If you already have Hashimoto's and you take excessive iodine, you can make your Hashimoto's worse. If you are hypothyroid, iodine has the opposite effect. Instead of making your thyroid too slow, it makes it too fast and makes you more hyper. Same for Graves Disease.

Links about iodine information that are backed up by legitimate medical studies, complete with references at the bottom:

ods.od.nih.gov/factsheets/I...

ods.od.nih.gov/factsheets/I...

A study about iodine restriction and how restricting iodine improves Hashimoto's.

"In conclusion, 78.3% of patients with hypothyroidism due to Hashimoto's thyroiditis regained an euthyroid state iodine restriction alone. Both a low initial serum TSH and a high initial urinary iodine concentration can be predictable factors for a recovery from hypothyroidism due to Hashimoto's thyroiditis after restricting their iodine intake." This quote is from this study: ncbi.nlm.nih.gov/pubmed/127...

From the British Association of Dietary Physicians, but for some reason they forgot to mention the very important part about excess iodine. No references listed. Doesn't even list "Thyroid Disease" on their limited list of medical conditions.

bda.uk.com/foodfacts/Iodine...

bda.uk.com/foodfacts/home

Josiesmum profile image
Josiesmum

I agree about optimising your hormone replacement and nutrition, as well as relaxation and exercise, however don't rule out antidepressants. I was sceptical about the benefits but my friend who has struggled with depression her whole adult life has seen a dramatic improvement in her mental health after being prescribed sertraline. Maybe you could tell your GP that you will consider antidepressants once you've had blood tests to show that everything else is optimal. Good luck x

Angel_of_the_North profile image
Angel_of_the_North in reply to Josiesmum

I'd only consider anti-depressants if a blood test showed that I was deficient in whatever neurotransmitters they were alleged to replace (AFAIK there aren't any, it's just guess work). As someone who gets aggressive on 5-HTP an SSRI would probably make me go out and shoot up a school.

Naomi8 profile image
Naomi8 in reply to Angel_of_the_North

5HTP makes me really anxious.I've had the best 18 months moodwise since a toddler(which is as far back as I can remember)on Sertraline, my current SSRI.I have a mental health condition.I have lived with chronic & acute anxiety & periodic depression for 66 years.

If I hadn't been so anti antidepressants in 2011 I could have saved myself 2 years of living hell with constant suicidal thoughts,my previous breakdown.

This time I asked my GP for the antidepressant Sertraline.I am so glad I did,despite my anti mindset & the prevailing anti mindset on this forum

Angel_of_the_North profile image
Angel_of_the_North in reply to Naomi8

If you get anxious or aggressive on SSRIs, often lithium works as an AD. Sertraline is just another SSRI so may well end up giving you the same symptoms in time.

Naomi8 profile image
Naomi8 in reply to Angel_of_the_North

I know Sertraline is an SSRI!Been on a very low dose,weaning off very very slowly but would use again if I have another breakdown,Was convinced after previous success with SAMe & increased anxiety on 5HTP,that an SSRI would not work for me.Previous trial with Cetalopran in 2011 made me MUCH worse.On Sertraline I have experienced the least anxiety in 66 years.And strangely,I have not felt the impulse to kill myself or any schoolchildren.

Angel_of_the_North profile image
Angel_of_the_North in reply to Naomi8

That's excellent.

ShinyB profile image
ShinyB in reply to Angel_of_the_North

I know I'm stating the obvious here, but just want to comment that lithium can be anti-thyroid. I was given it for many years to boost the efficacy of antidepressants as I had 'treatment resistant depression' Although I was given regular thyroid tests alongside the lithium, I'm not sure that it didn't contribute to my thyroid problems.

marigold22 profile image
marigold22 in reply to Angel_of_the_North

Do not take Lithium with thyroid meds. Lithium has a very negative effect on the thyroid.

Angel_of_the_North profile image
Angel_of_the_North in reply to marigold22

If someone is really depressed it might be the only thing that works. Many SSRIs are also anti-thyroid, esp the ones with fluor in the name. Perhaps T3 is the answer.

Bellerin profile image
Bellerin in reply to Josiesmum

thank you - all things to consider :)

ShootingStars profile image
ShootingStars

Good one. :-) 1950 was a long time ago. Times have changed just a tiny bit. Exactly why did the use of excessive iodine fly by the wayside, again? Legitimate medical research reflecting that too much iodine damages the thyroid?

Thanks, but I'm not interested in conducting my own medical research on the effects of iodine beyond recommended daily dietary allowance on people with thyroid disease. Too many people run the risk of sustaining additional damage to their already very damaged thyroids. Besides, it's already been studied a million times and the consensus is the same. The wheel has already been invented and it does a great job for it's intended purpose.

Erm, it's not me that's saying don't extra daily iodine, don't O.D. on iodine; it's the plethora of extensive medical research on the subject. I'm just the critically thinking messenger.

I don't need to try iodine myself to know that I shouldn't take it. Anyone can find and read the medical research available about the damage that excess iodine does to people with thyroid disease. There is no way in H eeee double elle hockey sticks that I'd ever consider consuming extra daily iodine. It makes no logical sense to do so.

If you understand thyroid function, the human body, thyroid disease and autoimmune disease, that would be more than enough to understand why taking excess iodine is contraindicated and dangerous. Eating pudding for proof would indeed prove the concepts that research supports: don't consume extra iodine unless you want to be sicker and sustain additional damage.

Aurealis profile image
Aurealis

Hi Bellerin, sorry to hear you’re feeling so poorly. I wonder if you feel well enough to consider all the different possible ways forward listed above. If nothing has made you feel any better, that is probably significant. It doesnt matter what your GP thinks or writes about you, just don’t look! (I don’t). I wonder if your GP practice offers anyone to provide support for people facing multiple diagnoses and managing several conditions? Mine does. I think it would be helpful for you to have chance to work your way through this maze with support from one person who you could see on a regular basis. In the past a good GP would have done that, now they all seem a bit stretched. If not, maybe you could seek client centred counselling or coaching to support you? Best of luck, onwards and upwards!

Bellerin profile image
Bellerin in reply to Aurealis

Thank you for your kind words. I wish my GP's offered that service! You really struggle to see the same person twice, and normally its a locum, so you have to explain everything each time & the appointments are only 5 mins each, so its difficult to even try to remember everything in such a short space of time! I will try to seek out a client centred counselling or coaching, but I have not heard of that, so I will definitely look into it.

Best of luck to you too

Belle.

whispers profile image
whispers

you can't just tell someone with comp,ex problems to "just switch" to anything how dangerous is that without knowing their full medical history and having test results to work from!

I tried iodoral for a year and it made me worse - and I don't even have Hashis! I'm sure it works for some people, but you also need to watch other nutritients and be aware of your genetic make up - for example, some hypo people do very well on extra tyrosine containing foods or even supplements while others on the same amount just get aggressive and want to kill something (probably MAOA gene differences).

Teuchter profile image
Teuchter

Hi.

I'm sorry to hear you are suffering.

I just wanted to add my voice to those who wish you well.

I'm sorry I don't have a magic bullet to make you (or myself) well again, any more than your GP has.

I have had similar feelings of despair at different times over the years, but these days I can (just about) manage to keep my chin up.

I truly hope and pray that things improve for you soon.

Regards

Geoff.

Bellerin profile image
Bellerin in reply to Teuchter

Thank you Geoff. I am also sorry that I do not have a magic bullet either, oh how wonderful would that be!

:) Hope you are managing well

Belle.

Canta profile image
Canta

Bellerin, so sorry you are feeling so bad. I don't have any advice to give but just want to add my voice to those who are wishing you well on here. Keep hoping.

Bellerin profile image
Bellerin in reply to Canta

Thank you, that is very kind :)

LMH1 profile image
LMH1

Hi Bellerin. I'm a newbie here and just posted recently as I felt so poorly I was scared. I had a lot of support straight away and it helped me so much, so I really just wanted to post to say even if I can't help with advice at this stage I am thinking of you tonight and really hope some of the suggestions will help.

I am not sure if this will be of any use to you but I will suggest it anyway. The herb Ashwaganda was very useful to me when I felt tearful and low and not coping very well with stressful situations. I take a spoonful each night with warm milk and honey and it has been extremely useful and also helps me sleep.

The other thing I can offer is friendship. I hope and will pray that things improve for you soon .Keep reaching out for support.

Xxx

Bellerin profile image
Bellerin in reply to LMH1

Thank you, you are very, very kind. I have been on this forum for a while now, but not posted in ages, as everything just got a little too much. But everyone on here is just so amazing and supportive :) I accept your friendship and offer it you right back :)

I take magnesium for more dreadful sleeping patterns and it does help me a lot. I get terrible cramping in my legs and hands, so I also use a spray that you can rub on and that helps as well :)

Wishing you health & happiness xxx

:)

LMH1 profile image
LMH1 in reply to Bellerin

Thank you Bellerin. That's put a lovely smile on my face. Night, god bless and speak again soon ☺️👭

Naomi8 profile image
Naomi8

Have you been tested for low B12?New studies suggest a link between anorexia & B12.Also a Swedish study shows a link between anorexia & coeliac disease

Josiesmum profile image
Josiesmum in reply to Naomi8

Yes, also low iron can also cause anxiety and depression.

Naomi8 profile image
Naomi8 in reply to Josiesmum

I've tried lots of different iron supplements(I don't eat meat regularly)I now use chelated iron:-iron bisglycinate,which I take with 1,000 vit C.This doesn't upset my digestion.Spatone makes my stomach hurt.Ferrous fumarate affects my gut slightly.

Bellerin profile image
Bellerin in reply to Naomi8

Thank you - I will have a look into it :) I was given a vitamin B12 drip when I was in hospital each time for my Anorexia, but nothing now I am at home. Ill have a look at getting it tested. My iron level (unbelievably!) has always been very good, hospital doctors were amazed! But I think it comes from my Mum, who has always had a good level, even with pregnancies etc. :) Thanks again for your replies xxx

li17 profile image
li17

I feel you so much! I don't have as many issues as you, but afib alone is driving me crazy. I had thought about giving up so many times. If not because of my young kids, I would have been under ground for a while.

Bellerin profile image
Bellerin in reply to li17

Please don't give up! I still feel so bloody awful, but people on here are so helpful.

I can't really help in any other way than friendship to you, but hope that helps slightly!

Best wishes

Belle xxx

li17 profile image
li17 in reply to Bellerin

Thank you for encouraging. Hope is the thing everyone needs here. I'm not giving up yet, trying hard and hope to be around till the kids grown into their adulthood. Belle I wish you will get well soon.

marigold22 profile image
marigold22

I'm so sorry you have had such a terrible time. My own story is horrific; was diagnosed hypothyroid in 1981, was suicidal for decades, had trauma after trauma; then in January 2017 I paid for one blood test privately - the one for thyroid antibodies. That returned as positive for one of the antibodies. So then I knew I have, not simple hypothyroid, but Hashimotos Thyroiditis. That then gave me the info that my thyroid was being poisoned by the antibodies, and in fact my thyroid has probably completely gone by now (after this vile illness starting in 1981 after my son was born).

Who is prescribing your T3? I saw Dr P back in 1995 & it was he who changed me from T4 to T3 only. For many many years I was only on 20 or 30 mcg a day. It was not enough; I managed to get one endo to increase to 40mcg a day and that higher dose has given me energy. BUT - I was still getting mega mega awful mental health symptoms. I feel like shouting the following info from the rooftops. It turned out that my body was seriously depleted of all nutrients, vitamins, minerals. Everyone is obviously different..... but in my case I needed high dose vitamin D3, high dose omega 3 (the brain is made of something like 80% fat so all this malarky of low fat diet is Krazy); high dose vitamin C, magnesium, zinc, selenium. Also the B VITAMINS. There are 8 x B vitamins in total. Everyone talks about the importance of B12, which is important. But, many of the other B vitamins are absolutely vital. B vits are for the nervous system (ie the way the brain functions). Until I had taken 1.5 tubs of B3, plus some B1 and B6, I didn't get rid of my mental health problems.

Personally, I'm sure that anorexia is a shortage of one of the B vitamins. "Clever doctors" (not many around) use B3 to help addiction problems for example. Here's a link to what all the B vitamins do.

brainmdhealth.com/blog/how-...

Also, a few months ago I did the AIP diet (auto immune paleo diet). It's going right back to absolute basics with food, eating only home made bone broth, veg, some fruit, oily fish, chicken (as organic as possible), and then slowly adding back things like dairy, and other foods. Have to wait 5 days in between adding one food back in to see if your body reacts adversely. That has helped me a lot - it seems that my body has been 'cleared out' of the amassed rubbish food I had eaten over many years... although I've never eaten take aways or fast food etc. I know exactly how you are feeling; I didn't want to carry on living the way I had lived for decades. You can turn it around. Big hugs.

Bellerin profile image
Bellerin in reply to marigold22

I am so sorry you have experienced so much trauma. I feel for you. I have as well, and sometimes it feels like you have more than your fair share & it becomes so upsetting.

My diet is obviously awful, but still being anorexic and now being slightly over-weight is just making me uncontrollably upset - I can't remember the last time I went outside, other than appointments, and I haven't seen any of my family, including my brother, for around 3 years because of all this. I just can't face anyone with this amount of weight on, it sounds rather strange to be so upset about it & let it dominate your life so much, but that's anorexia. It is also difficult to have severe dairy allergy and coeliac disease, as then every diet becomes so much more of a minefield.

I will look into having my vitamins & minerals tested, as I do feel very angry all of the time. Can you recommend a test to have? I get a bit bogged down with everything that needs checking!

Thank you again for your reply, it means so much, to just have somebody going through similar, so I don't always feel so alone.

marigold22 profile image
marigold22 in reply to Bellerin

I was agoraphobic for many years, not all the time but for long periods. It wasn't weight with me, it was that I felt I looked like a complete bag lady! So we can blame all sorts of things for not going outside the house in public. My various B vitamins have got rid of that in me. Now I just say to myself - if you take a look around at people in town, most of them look a complete mess! Now I don't care one hoot what I look like, say to myself it's a form of vanity if I care what folk say or think about me.

Regarding tests for vitamin deficiencies, I doubt you can easily get a test for shortage of, for example, vitamin B6. All B vits are water soluble, so you really can't overdose on them; any excess comes away in urine. The only one to be careful of is Niacin (B3) as too much gives peculiar symptoms. I did take too much one evening, had bad prickly sensation on my face, felt extremely hot, but fell asleep & it had gone in the morning. I suggest you invest in Solgar B1, B3 & B6 (not sure about B5 - I haven't taken any). I took a Multi B for ages but it wasn't touching my mental health symptoms, so did invest in individual B's. I've been left poverty struck as couldn't work from age 50 so it's a struggle to pay for things like vitamins & blood tests. I've found it's not worth paying out for blood tests except for vital ones like - do you have Hashimotos with antibodies, or simple hypothyroid? Also I did invest £160 for DIO2 gene test to confirm what I thought - ie that my body can't convert T4 into the usable thyroid hormone T3. It returned as positive from one parent. I beg as many blood tests as possible from the NHS, and only pay out for ones I really feel are vital. x

marigold22 profile image
marigold22 in reply to Bellerin

PS Feeling very angry in me has been happening for decades. Now my brain is working with the B vitamins & higher dose of T3, I've realised I get very angry when my adrenal glands are low from very high stress. Now I'm getting a top up every day of adequate T3, I recover from major anger within 2 days, but do have to rest, do things I really enjoy, chill out, eat lots of varied nutritious food etc. If your adrenal glands are depleted but you have no resources of T3, vital vitamins & minerals, your body struggles to get back to 'normal'. And then it's a complete downward spiral. Think of your body as a car - it needs the correct fuel to function properly; if it doesn't get what it needs to function, then it will break down. x

marigold22 profile image
marigold22

Hi again, I've read somewhere in your replies that you are mainly eating veg. You need to eat protein as it is the basis for thyroid function, you also need good cholesterol. Your body won't function properly without all the main types of food, x

AnnaSo profile image
AnnaSo in reply to marigold22

I copy that like 100 times! Because of my vegan diet (3 years) I ended up in A&E yesterday! I think vegan works but not for everyone and for me (and likely other Hashis) it only made me feel better in the first year to make me feel much much worse later on. So look after your diets everyone!

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