Does anyone struggle making big decisions

[Angie10116]

I’ve recently got a loan for a car, and I’m low key regretting it because I’m so scared about what the future holds. I’m worried that I will feel feel worse or that my mental symptoms won’t clear up. then won’t be able to work ect. The brain fog is making it difficult to think/see clearly and the depression also isn’t quite helping. I know things should get better but I’m very anxious. My question is, does anyone put off big decisions bc of the brain fog/anxiety about your future? Thank you

[waveylines]

Am so sorry to hear you feel so poorly and are understandably worrying about the future. Are you on a programme to slowly increase your thyroid meds? It does take time to gradually increase the dose and for your body to recover. I remember when I was very early in my treatment I felt extremely poorly and it was hard to focus on anything much. So you have all my sympathy. Depression as a symptom commonly goes with hypothyroidism but lifts with optimal treatment. I did recover it took a while and was able to resume full time work. Can you post your latest blood test results and ranges and what you are currently taking.

[Angie10116 in reply to waveylines]

Thank you for your sympathy, and I’m sorry to hear that you also had to go through these things.

After being in 75mg of Levo for 4 weeks, my tsh went from 36.06 to 74.3…so my doctor upped me to 100mg which I’ve been on for just under 2 weeks now. The brain fog has defo gotten worse since upping my dose. I feel like I’m on auto pilot and like I’m just drifting through life. Sometimes I get derealised and everything feels like it isn’t real. Sometimes I don’t even feel real anymore and I question who I am. It’s horrible

Test results

[waveylines in reply to Angie10116]

Am so so sorry to hear this. Am glad your GP increased the dose. For your TSH to have gone up further after starting treatment it sounds like your thyroid is really failing. You must feel awful! Thyroid treatment has to be tiltrated up (increased) slowly and it takes 6-8 weeks for each increase to take full effect. From your test results it looks like you will need several further increases. Make sure your GP retests your levels by the 6th week. The other thing to do is to get a full thyoid panel. This will include not only TSH but the levels of actual thyroid hormones (T4 & T3). The NHS rarely tests these. You can have these done privately quite cheaply. Look on thyroid uk website for sources. Post results on here there are lots of really knowledgeable people who can help.

[Angie10116 in reply to waveylines]

Thank you so much for the encouragement. Things should get better right? With optimal treatment. Bc right now it seems like nothing will get better. But I just need to stay hopeful and relax! Yes I’ll be on top of my gp to keep testing me. Thank you!

[waveylines in reply to Angie10116]

Yes with treatment you should start to feel better but with your levels it will take time. No quick fix am afraid. You may need a while off work to recover.

[Angie10116 in reply to waveylines]

Of course. Thank you!

[waveylines]

And I meant to add please let your GP know if there is no further improvment in another couple of weeks......he/she may have to consider a further increase a little earlier and should definately be told if you feel you are getting worse not better. The thyrod panel blood test would help because it will show the actual levels of thyroid horomnes that you have. TSH isn't a thyroid hormone its a horomone released by the pitutory to tell the thyroid to prodce more or less thyroid horomes. This increases when your thyroid needs to produce more and reduces when less is needed. Its called a Thyroid Stimulating Hormone. The NHS prefers to use this as their guide to treatment rather than the actual hormone levels. This can make it hard to work out what is happening to your actual thyroid hormones and how well you are converting the storage form of thyroid hormone (T4) to the useable form (T3). The treatment you are on is the storage form of thyroid hormone (T4) as many peoples bodies will convert this well into T3 but not everyone. This is why we suggest getting a full thyroid panel blood test.

Hope this is not too much info when you feel soooo poorly at the moment.

[Angie10116 in reply to waveylines]

Thank you for explaining everything so well!!

These are those results but without ranges

TSH : 74.30

FT4: 11.9

FT3: 3.1

[waveylines in reply to Angie10116]

If you can get the ranges then that would help as they vary a little from lab to lab. Am so glad youve got the the thyroid hormone levels. You are low in both thyroid levels. It maybe a little early to work out if there is a conversion issue though and I would be inclined if it were me to see what happens with the next blood trst. Keep copis of all blood tests. They are great to look back on to see trends. The space out feeling and dizzyness is common with low thyroid levels. You need to rest up and take things easy for a while.

[Angie10116 in reply to waveylines]

Thank you so much, you’re lovely! Yes my levels are just in the ranges but the lowest they could be. Hopefully onwards and upwards from here

[waveylines in reply to Angie10116]

Absolutely! Your GP sounds more on it than most I must say! You take care....let us know how you doing.

And Slowdragon is right some of the brands of levothyroxine dont suit some but am not up on that as am on a different treatment. But be worth checking out. Xx

[Angie10116 in reply to waveylines]

Thank you so much! I’ve already changed my brand a few times so I think I’m okay! Just have to sort these levels out. Please take care! Xx

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

It takes 6-8 weeks for each increase in dose to have effect

Approx how much do you weigh in kilo

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Have you had vitamin D, folate, ferritin and B12 tested

If not request GP test these now

Being hypothyroid frequently causes low stomach acid and poor nutrient absorption and low vitamin levels as direct result

What vitamin supplements are you currently taking, if any

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[Angie10116 in reply to SlowDragon]

Thank you for all of that. I was mainly asking about making decisions and how it impacts daily decision making but thank you very much for all the info! X

[SlowDragon Administrator in reply to Angie10116]

Your brain needs and uses lots of Ft3

Obviously at moment your Ft3 is rock bottom

[DippyDame]

Goodness, yes! So sorry you are in that place too.

I went through a stage where I felt " out of my body" I would be sitting talking to someone and they seemed to be fading into the distance. At that point I had no idea that I was seriously hypo, medics thought it was a neck problem and put me on traction. I thought I was losing the plot. That was over 40 years ago!

One day I was driving into town....and knew I had to turn round and go home, my head was in a confused mess. I drove straight to my surgery and was given antidepressants. The worst possible treatment for me, so I only took them only for a short while.

Decision making was difficult but eventually I insisted on a thyroid test which signalled hypo and a long thyroid journey began ....I have a form of thyroid hormone resistance/tissue hypothyroidism. Explanation and solution eventually found, years later.

I need a supraphysiological dose of T3-only to function.

Depression and anxiety are symptoms of hypothyroidism so your reactions are not totally unexpected. Your life will get back on track once you are correctly treated but be prepared that it won't happen overnight... not realising that can cause further anxiety as you wait to feel better, thinking nothing is changing!

I'm now 76 and my old brain now functions well enough again, so the problem was transient....with the correct treatment you should recover too. As I write this I'm thinking, "did I really feel that bad"....but I absolutely did!

Your thyroid is clearly struggling badly (or removed) so If you haven't had a full thyroid test recently then I suggest you test TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies.

NHS tests do not provide enough information so most of us test privately -

thyroiduk.org/help-and-supp...

The results will point the way forward, you will improve. T3 is probably your answer.

Fortunately, like me, you have found this amazing forum.

Post new results and members will offer advice

Good luck

DD

[Angie10116 in reply to DippyDame]

Thank you so so much!

I’m so sorry that you had to go through that! It is such a horrible feeling. It’s like derealisation/ brain fog. Do you mind me asking how long it took for that to go away after you got diagnosed?

I’m so so glad that you’re well and better!

I had RAI done on it! I really regret it now.

Thank you for all of the information! I really appreciate it!

[DippyDame in reply to Angie10116]

Thank you Angie10116

I had "it" for a considerable time because nobody really knew what was going on, I can't remember exactly how long it took to clear but it was gradual not instant...it most likely depends on how hypo you are/ how low your T3 has become. A few weeks perhaps, we are all different

Is your thyroid still producing T4?

Do you know if your body can effectively convert T4 to T3?

Bottom line...when you have new lab results they should answer these questions and indicate the treatment that you need.

This too will pass!! Meantime, ask as many questions as you feel might help and be kind to yourself!

Take care

DD

[Angie10116 in reply to DippyDame]

Awh right, will I’m glad it’s over now for you.

No unfortunately my thyroid is completely killed off! I think I can convert well, but I’m not sure 100%. I do have t3 at home so I can try it in the future.

You’re very sweet thank you so so much ! Xx

[jgelliss in reply to DippyDame]

Spot On DD.

[shaws Administrator]

Put your negative thoughts to bed and look forward to using your car.

None of us know what tomorrow will bring and hopefully it will be a warmish, sunny day that lifts our spirits looking at fluffy clouds with blue skies and sun, and all our clinical symptoms have resolved.

😀

[Angie10116 in reply to shaws]

Thank you so much. I needed that a lot. 😁 you’re very sweet

[shaws Administrator in reply to Angie10116]

For me levo was more in par to taking some poison than restoring my health and removing clinical symptoms.

It is a mistery to me that so many thousands of people in the world seem to recover on levothyroxine alone and they definitely wont be searching the internet.

Mind you, many do complain of unexplained weight gain and Stopthethyroidmadness explains the reason:-

stopthethyroidmadness.com/h...

[Angie10116 in reply to shaws]

Oh goodness, I’m sorry to hear that! What are you on now if you don’t mind me asking?

[shaws Administrator in reply to Angie10116]

I have been very fortunate indeed to have had T3 restored which has 'restored' my health and I feel well and symptom-free.

I don't understand why those "at the top of the tree" and supposed to be knowledgeable have removed NDTs - safety proven since 1892. They then removed T3 and both decisions are obviously made by those who do not have a clue how disabling symptoms can be to the people who swallow levothyroxine.

We are aware that many people seem to be o.k. on levo but they will not be searching the internet. Mind you some people may not have internet connection, so are lost as GPs don't know very much. (mine - for instance phoned to tell me there was nothing wrong with my blood test results. It's a good job I got a print-out from the surgery and TSH was 100.

I wonder if 'those at the top of the endocrinology tree' read a woman's "Last Testament" for the coroner to read of the reason she had ended her life. It is so sad that her dysfunctional thyroid gland treatment led to this decision.

I would never consult any one of those who made these decisions as they are positively ignorant about symptoms or how to relieve them and should resign immediately as they are failing in their profession i.e. endocrinologists.

No-one is listening to the cries of some desperate people who want to recover their health. It seems also that the experts do not read scientific published papers about how best to treat patients and how to do so. They should connect with the researchers in order to learn the nitty/gritty of how best to treat those who have dysfunctional thyroid glands and for whom levo is awful.

[Angie10116]

I’m so glad that you’ve recovered. But Damnn, yes you’re preaching over here.

If my levels are ok but I still have symptoms, do you think NDT would be a good try? I just got upped from 75mg to 100mg around 2 weeks ago and feel worse. Anxiety is back, such bad headaches and foggy brain. Just feel so disconnected from reality and it’s so scary. Doctors and even private endos know nothing!

[June25]

I think you are trying to deal with a very important question, not quite the one you've asked but connected I think. Simply put, our physical and mental health dictates everything we are able to do in life. It has to be factored into all the decisions we make.

For example, if I have had enough after a few hours walk on flat ground then I shouldn't book myself up for a trek in Nepal.

For example, if I always dreamed of retiring abroad but I can't arrange to get the meds I need in that country then that retirement plan won't work.

You get the idea. So this might look like putting off the decision. Maybe I could train myself up to the physical fitness required for a trek in Nepal and then book it. Maybe sometime in the future there will be a way to get the meds in the country I want to retire to. Fair enough, but it's a maybe. You are not in a position to make a firm decision at that moment.

You are being responsible, realising that you shouldn't make big decisions based on a presumption of good health at some time in the future. You can be positive and make plans and imagine a life for yourself that you want in the future, in fact that's necessary for you to have hope, but big decisions for which you put your money on the table need to wait till you know you have the health and capacity to fulfil them.

As for the car, why not. Owning a car is one thing, driving it is another. Only you can know when you are having a day when you feel spaced out, when things don't seem real. For your own safety and that of others, don't drive on a day like that, otherwise enjoy your car.

[Angie10116 in reply to June25]

You’re so right! What a lovely answer, thank you so much June!

I never thought of it that way to be honest, but I guess experiences make us think differently

[Wired123]

Hi and best of luck on your journey. It takes time as others have said.

Keep researching and reading as doctors are notoriously poor at all this, hence this forum exists!

Don’t be fobbed off by doctors, make sure you see an Endo (go private if you can afford it) to make sure you’re getting better treatment than a GP can offer.

Don’t be fobbed off and put on anti depressants as that’s the easiest way for doctors to get rid of you.

Get your thyroid optimised before ever considering anti depressants or other mental health drugs.

Also important to eat a good diet, cut out all processed crap that comes in a packet. Basically eat like grandma did and you should be fine. Some also recommend cutting out wheat, gluten and dairy. Worth trying that and see if it helps. Eliminate it all and then slowly reintroduce one to see if it triggers any issues.

All the best.

[Angie10116 in reply to Wired123]

Thank you!