I'm feeling very low at the moment, and quite isolated. I'm hoping to get some advice here. I'm a 45 year old male, and have had Hashimoto's since my early 20s. After a terrible few years on thyroxin I found NDT and on the whole have been relatively well on it.
However, since around 2019 I've had bouts of what I can only describe as a mixture of depression, anxiety, restlessness and claustrophobia and it is deeply unpleasant. This is mainly my own doing as when I'm feeling well I tend to become relaxed with my regular medication...not so much my NDT but certainly the vitamins I should be taking. For the last year, due to several general life reasons I've not really maintained my vitamin routine and have even missed some of my NDT on days. I really regret doing this now.
This week has probably been the worst I've had of these bouts and I'm feeling really low. To complicate matters I think I've also developed sleep apnoea which been horrendous as I wake sometimes gasping for breath and this heightens my anxiety.I have my first child arriving in July and I feel so sad that I'm not mentally well enough to enjoy the experience.
This is what I've done so far -
- Resumed strict taking of my meds (selenium plus 1 grain NDT upon waking, vitamin C and D at 3pm, and zinc,magnesium, and 1 grain of NDT at 9pm)
- Ordered and received a medickeck full thyroid blood check (will do this first thing Monday)
- Booked a Dr appointment for the sleep apnoea
Once I get my blood results back I will post on here for some advice. I'd be so grateful if someone could help me look at them. This is a lonely journey when you're not well and you can't turn to the NHS.
Thank you for reading. Any support or advice is greatfully received
🙏
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ci00aaj
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So sorry to hear you are having such a rubbish time. The depression that can come with these meds not being optimum can make things feel so hopeless sometimes. I can't give you advice on your meds & vits as I have not long started on the journey to recovering health myself but there are many, very, very knowledgeable people on here who will definitely be able to help you. So don't give up as I am sure that you have just started on the right track to recovering your health with this forum. The people on here are pretty amazing and their knowledge and experience is worth more than many GPs and Endocrinologists all together. Don't knock yourself for worrying that you might not feel well enough to enjoy the birth of your first child. It can happen that you feel that and sometimes for women it can be like that too but I am sure that when you start to recover you will feel more able to cope with it and start to really enjoy it. I wish you all the very best and hope you will keep us updated as you progress.
Excellent action plan and good job recognizing that you have control over some of the parts that need fixing. I love that!!!! It is truly to key to mastering this whole situation we find ourselves in.
All of us have been where you are, lots of us still are. Yes it’s true that no one understands this horrible invisible disease we have except us who have to deal with it every day.
Isn’t that anxiety/depression feeling the worst! It’s so foreign to me as I sit with it at time and I just have to shake my head at the impact a little wacky blood chemistry can have on my whole being.
All that’s to say is you are not alone. Because you have us! Sounds trite but it’s not.
You can come here a million times a day for a listening ear, commiseration, wisdom, shared experience and support.
Wr look forward to seeing you results when you get them!
Hi ci00aaj, you’ve made a really positive start. First of all you’ve come on here, I had Graves’ disease in 2012 and I don’t know what I’d have done without the support offered by this group. Then you have realised what is contributing to your problem which is great too because you are now in control.
Maybe I’m just a control freak but I found finding out as much as I could about my condition by coming on here and by reading as much as I could about it and by doing my own blood tests before I had my official ones done - I liked knowing before I got to my appointments what my doctors were going to say about me.
I always think it is really important to be an active partner in my treatment - don’t just let doctors do what they want to do - ask questions.
I had a little notebook that I used to jot things down in - test results, levels of drugs I was taking, vitamins etc I was taking, how I felt on each change of meds etc. also any questions I had for when I saw the consultant - being overactive I saw my consultant regularly.
I know exactly what you mean about your vitamins falling by the wayside - I’m not like that with my meds but I do eat more chocolate than I should - even though I know it isn’t doing me any good.
So good luck, your action plan is good and you are correct - you can’t always count on the NHS - my belief is that applies even more to people who are hypothyroid - I always think when you are very hyper they’ve pretty much got to do act fairly quickly (in case you pop!) Also if your thyroid results fall ‘within the range’ you may still not feel well because although your results are within the range - they are not optimal for you. Keep in touch with the group.
Thank you all for the positive messages, it has actually made me feel a bit better about the whole thing. It's a difficult condition to talk to friends and family about at the best of times and its eve harder when you cant really articulate exactly the weird unpleasant feelings that sometimes come with it.
SlowDragon - thank you for the advice on timings of my meds, i really appreciate it. Laziness means i usually do all tablet together at 7pm, 3pm and 9pm but i will change this. I think the medicheck Advance Thyroid Function test checks all of the ones you mention so i will be sure to post the results. Also forgot to mention i was taking Vitamin B Complex before it all fell away...
Are you self sourcing your NDT - as there have been some potency issues with some brands which may have compounded your health issues.
Having ' been there myself ' in some ways this past 18 months I'm pleased to say I think the reformulation of the reformulation of Thyroid S - if that is what you have been taking - is now back to normal :
I'm only a couple of weeks into a new prefixed 23 batch but my mental clarity and positive thinking is to the fore again :
hi, I'm afraid I'm not one of the people on this great list who can advise about treatment strategies but just wanted to say it can really be a lot to manage all the symptoms and depression/anxiety, I hope you can maintain your regime and that you will feel better soon. Good luck
Morning all, I'm feeling a lot better today. The darkness has gone somewhat and it now feels like it was a lot of fuss over nothing but i understand i cant let my regime slip as in the midst of it all i feel really rotten. Thank you all for the messages of support and encouragement, it really means a lot.
I will still get my bloods done on Monday and will still go see the Dr about the sleep apnea next week, that i can promise!
pennyannie - I'm also on Thyroid-S sourced directly from Thailand. I'm on a new batch from 2024 as i lost 2 whole bottles of my supply (2023 supply) in a house move last year! I'm so poor at ready my own body signals i probably wouldn't have noticed a difference tbh but thank you for pointing that out
There seems to have been an issue with some batches pre-fixed 22 - but not for all people -
I'm without a thyroid Graves Disease and post RAI thyroid ablation 2005 so maybe the symptoms more easily ' read ' and now feel so much better on a prefixed 23 batch - and just like I felt when I first started self medicating some 6 years ago.
I've just linked you into further information on Thyroid S batch numbers presented by our amazing, one and only resident ' collator of all things thyroid ' : Helvella :
Hi, sorry you’re having a rubbish time. I did the same waking up in the night when I was pregnant. Think it was more the heartburn/acid reflux that was the cause. I always use a cushion under my pillow to prop myself up a little and it really helped. Also, 2 grains of NDT may be a little low but obviously the tests will prove/disprove that. Hope it gets better for you x
Hi 1dolly - I also thought 2 grains might be low but notice that my my thyroid gland swells up once i increase dosage (the extra grain is usually taken at 3pm). As you say, i will only truly know once i get my bloods done
Morning all, just wanted to say i got my blood test done this morning (bled everywhere) so looking forward to getting those back and hopefully understanding why i feel so rough.
The horrible feeling have lifted somewhat but i'm not completely ok just yet. Going for a walk before work has helped a lot, as i notice that the anxiety is worse first thing in the morning. I've also figured out a way of sleeping that reduces the sleep apnea so i'm getting a bit more sleep now.
I will post my results here as soon as i have them
7am – 1 grain of NDT (Thyroid S) / Vitamin B / Selenium
3pm – Vitamin C / Vitamin D / Cod liver oil capsule
9pm – 1 grain NDT / Magnesium / Zinc
I’m not great at reading these but it’s clear I’m Vitamin deficient. My T3 is quite high as I assumed I needed to be at the top of the range so i dont know if the amount of T3 in my system is causing the horrible anxiety feelings…happy to listen to any advice on this. The only other thing I did notice is that when I did my last blood test in Oct 2021 the Thyroid Peroxidase Antibodies number was showing 73.7 and it now showing 22.3 (and within range). Would anyone know why this might be the case?
Thank you for taking a look at these for me…still feeling up and down but happier that I’m doing something about it
Hi there. Did you end up reducing your dose of NDT ? Just curious because I have a lot of ups and downs also and sometimes wonder if I’m on too much medication. Hope you are feeling better 😊
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