So my journey started May 2016 I lost my mother aged 28.
After months of excruciating grief I got a terrible virus (labrynthitis) in December last year which by January hadn't gone.
In January 2017 I got a dissociation disorder. This presented itself as derealisation. It's hard to explain but it's basically like looking at the world underwater or as if one is drugged. Also describe it like not really feeling like I'm here.
march 2017 I got a call saying I had sub-clinical hypothyroidism as a result of hashimotos and a TSH of 5.4
Since then I've had endless therapy, therapy for anxiety and for grief and NO ONE can help me get rid of the derealisation. It's ruining my life.
All the while the BEST my tsh has been is 4.8 which docs think is a "good safe level"..... they won't test for my t3 or anything else so I am on a waiting list for NHS endo. Not feeling hopeful after some of the stories I've read from other NHS patients. And I cannot afford to pay for private healthcare or blood tests as I'm not well enough to work.
Has anyone else had a dissociation disorder and recovered? Is it possible my dissociation is due to my levels never being low enough?
Now 30 I don't want to live with this anymore I can just about bare the pain from the thyroid problems but the mental distortion is making life not worth living.
Any advice or knowledge on this would be hugely appreciated!!
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wowserclo
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Do you know how much private testing actually costs? Yes, it's expensive, but it isn't as expensive as you might think if you've never done it before. And you don't have to see a doctor or get a doctor's permission or approval to get it done.
You could have your TSH, Free T4, and Free T3 tested for £39.
Another thing to bear in mind is that the timing for testing makes a difference. If your NHS tests haven't been done first thing in the morning while fasting then you probably haven't got the "best" results for you. (By "best", I mean the results a doctor might take notice of.) Time of day and food intake can affect thyroid function test results.
Many of us use finger-prick testing by the way, so we don't have to pay anyone to take blood from a vein in the arm. Although if you have a friend or relative who would do it for you there is no extra cost for the equipment.
Grief can have a devastating affect on your body l know this from experience, after nursing my husband with cancer at the age of 54 l kept getting vertigo so bad that l couldn't get out of bed, this went on for weeks and l thought l would go mad, after l recovered l would go shopping but only come home with milk and bread l felt like l wasn't in the real world any more, thank goodness 10yrs on l have made a life for my self even though l was diognosed with underactive thyroid.... good luck to u for the future
Hi Hayme thankyou for your message. I'm so glad to hear there is a light at the end of the tunnel. I do feel grief was the major onset for me with all of this. It's like nothing in this world is it?! I think the best description is that it's a club no one wants to be part of!
I'm struggling with on and off vertigo as well as the dissociation it's no fun! I'm so glad to hear you have a life again it's given me hope I will too. Good luck to you too and thankyou
Yes, dissociation is a hypo symptom, I'm pretty sure. I've had it myself, before I was diagnosed and treated, and I've heard of other hypos that have had it. Not on here, but on other forums. Now that I'm properly treated, it's gone. But, to get properly treated, I had to start treating myself. I've never met a doctor that knew anything about thyroid. Not trying to one-up you, but I had one doctor who thought a TSH of 9.5 was 'good enough'! Their ignorance can make your eyes water! So, if there's another doctor in the practice you can see, I would advise you to see him/her, because you're not going to get well with a TSH of over 4. And, you could have a long wait to see an endo, who might not know any better, either! It would be best if you took positive action now. If you can.
First of all you are clearly hypothyroid. TSH 4.8 isn't "safe" or normal. Some people feel very unwell with much lower TSH, myself including. Have you considered changing your GP? The one you are currently seeing is clearly clueless about treating hypothyroidism and can do more harm than good.
As other members stated, it's crucial that your TSH is always tested first thing in the morning, as early as possible. The earlier you test it, the higher it's going to be. TSH always decreases in the afternoon...
You have described "derealisation (...) looking at the world underwater or as if one is drugged (...) not really feeling like I'm here." This is what hypo brain fog feels like. I experienced it as well and it was awful. It goes away when you are on the right dose of the right medication. Our brain has more thyroid hormones receptors (T3) than any other organ in our body. When T3 levels are low it affects our cognitive functioning (inability to concentrate), our emotional funtioning/mental health (=depression, anxiety, brain fog). You are feeling this way because you have hypothyroidism and you are not beign treated for it.
It makes me angry that someone diagnosed you with dissociative disorder. I hope it wasn't a mental health practitioner (a nurse? a psychologist? a psychiatrist?). They should be ashamed of themselves! Dissociative disorders are among the most severe psychiatric diagnoses that can be given to anyone and are usually associated with chronic and severe childhood abuse = multiple traumatic events early in childhood: dsm.psychiatryonline.org/do...
Losing a loved one is traumatic BUT you don't get dissociative disorded as a result. Please: don't let this sorry excuse for a "diagnosis" stick to you! You are grieving but once you are properly treated by a knowledgeable doctor you will start feeling better.
I am overwhelmed, what a lovely reply. Thankyou @kitten1978. It means a lot.
I feel a huge sense of relief now I know that this constant feeling of not being here is my thyroid! I've spent hundreds of pounds on therapy and it hasn't gone so this makes total sense ! I also never had anxiety before this and I have been told I'm an anxious person. I'm not! I never have been! It's this!!!!!
I am considering changing doctors because I've seen nearly every one in my current surgery and the only one who was remotely helpful was a trainee GP and now he's qualified he's left the surgery!
How would you suggest going forward to get rid of this? I've just been moved up to 75mg and it took me two weeks of edging up on quartered tablets to do so because I find increases make me feel awful!
I see an endo for the first time next Friday let's hope he knows how to help me!
I'm glad I've been of help. And glad you are considering changing your GP surgery. Is there any way you could gather intelligence about GPs in your area? E.g. from your neighbours, friends etc.?
If you email Thyroid UK they will give you a list of recommended endos. It's really difficult to find a good endo in the UK... ;(
75mcg of thyroxine is unlikely to be a full-replacement dose. You will need to wait 6 weeks and then get yout TSH tested. Always fasting and early in the morning. You take your thyroid medication AFTER the test.
According to Dr Toft "the appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l (interview with Dr Toft, which you can obtain if you email Thyroid UK). So your TSH needs to be supressed.
It would be good if you get your FT3 and FT4 tests done. If your GP refuses to do them on the NHS they may agree to get them done privately in your GP surgery but you'd have to pay for them. At least you wouldn't pay for phlebotomy services. Alternatively you can do them privately. There are links to private labs on the Thyroid UK website. You can also ask for advice on the forum.
Also: get your iron, ferritin (or TIBC), B12 and D3 tests done. Thyroid hormones don't work without good levels of D3 and iron and thyroid patients are often deficient in iron, D3 and B12. Getting D3 tested on the NHS may be difficult but it can be done privately. If you have difficulties write a post and members and admins will advise
Some people feel better on T4/T3 combo, natural dissected thyroid (ndt) or T3 but it's very difficult to get prescription for them. Genetic mutations are usually the cause. It's best to wait until you are on a full replacement dose of T4, and your iron, B12 and D3 levels are optimal. If you still don't feel 100% you may want to consider a different medication.
Hi! I know that this was a long time ago, but I’m just wondering what medication helped you with the brain fog. I’m struggling with it now and I’m on T4. I’ll be adding t3 into the mix shortly. I would really appreciate some advice! Thank you
I’m now wondering about this too! The feeling of being “spaced out” is driving me mad. Everyone keeps telling me it’s anxiety but I just don’t believe it 😭
I just feel like I’ve been collecting anxiety type symptoms over the last year in particular, it’s awful! Dizziness/walking on a boat and dissociation/spaced out are my worst! My thyroid levels aren’t great but my endo won’t let me try T3 because I reacted badly to being slightly “overmedicated” with T4 😭 No idea where to turn next, I feel like I’ve tried everything, so I’ve been working hard on acceptance. Extremely difficult though!! How have you been getting on?
I googled “thyroid dissociation” and your forum post was on top. I hope you’re feeling better now. Have you noticed any changes?
I’ve been “dissociating” so badly lately! It happened to me once on vacation, during a beautiful morning at the beach but it mostly happens when I’m very stressed out, tired, or deal with difficult people at work. It’s really horrifying!!!
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thankyou for your message. I'm so glad to hear there is a light at the end of the tunnel. I do feel grief was the major onset for me with all of this. It's like nothing in this world is it?! I think the best description is that it's a club no one wants to be part of! 
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