I feel broken 😒: Am so tired of being ill. Have... - Thyroid UK

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I feel broken 😒

Angie_Phalange
Angie_Phalange

Am so tired of being ill. Have tried so hard, been faffing around for over a year with endos, levothyroxine and NDT. It’s been 3mths of NDT, I’m tired, so so tired. Physically exhausted and don’t think I’m mentally strong anymore.

I’ve tried to be optimistic but I’m struggling. I’ve lost so much weight, and I was v small to start with. I’m skin and bones. Eating OK, protein shakes etc. My vits are ok incl B12, Vit D etc. I’ve tested negative for Addisons.

I’ve reduced my NDT from 2.5 grains but considering ditching that now as well. I can’t think straight, my heart races, I‘m crying. My GP is good and I’m seeing her on Monday. I think she’ll mention anti depressants. This is becoming a consideration for me now, I really don’t want to take them though. Before I was diagnosed with Hashimotos, I was dealing with a lot of stress and trauma - for many years. Maybe it’s all just caught up with me. Need a hug.

25 Replies

Bless you Angie i know just how you feel been there many times....just try and be strong and try to be positive ....i know its hard very hard big hugs from me and good luck for your appointment.sending all my love

Christina xxx

Remember your not on your own.

Thanks Christina. I feel really alone. I don’t have any family and my poor husband tries his best. x

Yes same for me angie

How do you manage? I’m just not strong enough anymore. I don’t usually feel so sorry for myself! I used to be so positive!

Manage!!! Phew some days i dont ....im in bed all day ...like today thats because im not sleeping well at all only get 2 to 4 hrs a nite so really feel shattered i was on ndt 3 grains nature throid for nearly 2 yrs but last 6 mths gone down hill rapidly ...so 12 days now back on 150 mcgs levo daily i decided that ndt cud not be relied on so why pay all that money for something that does u no good..but like you i feel so rubbish but try to be positive and push through the pain of the joints and all the other symptoms that come with this awful iĺlness ...be strong angie it will get better x

shaws
shawsAdministrator

Plenty of hugs will be sent from members. Most have been in situations like yourself.

NDT doesn't agree with everyone and sometimes we've to try a few before we find one that suits our body.

What dose of NDT have you been taking because it shouldn't cause a big weight loss. Most people with hypo complain of weight gain.

Have you had an up-to-date blood test. You have to make sure if your FT4 and FT3 are towards the upper part of the ranges and TSH 1 or lower. If GP wont test, you can get a private one and, just in case, I'll give a link. Remember to draw blood at the earliest and make sure you are well-hydrated a couple of days before. Allow a gap of 24 hours between last dose of levo and test and take afterwards. Request TSH, T4, T3, FT4, FT3 and thyroid antibodies.

thyroiduk.org.uk/tuk/testin...

Angie_Phalange
Angie_Phalange in reply to shaws

Thank you 🙂 I was up to 2.5 grains last month and results were:-

TSH = undetectable (range: 0.2-4.5)

FT4 = 15 (range: 9-21)

FT3 8.5 (range: 2.6-6.2)

Endo felt I should reduce to 2 grains but wondering to reduce further as I feel so dreadful. He’s confirmed that I have autoimmune thyroid disease based on nodules - I tested negative for antibodies.

Feel like giving it all up to be honest. Levo was bad, did worse on that. Endo said it was unusual to do so badly on levo.

I have lost loads of weight. Size 6 clothes hanging off me. I’m frail.

Your fT3 is a little high. Did you take NDT before the test?

I didn’t no, left it for 24hrs. Endo wasn’t happy with that FT3. Said to reduce Nature Throid.

We are all different, but I’ve never had FT3 more than very slightly above the range even though I’ve often had fT4 well above and suppressed tsh. T3 that’s too high is very unpleasant, makes me feel ‘beside myself’, ‘uncomfortable in my skin’, very hard to describe. Think it may be worth following endo advice to reduce dose but don’t do anything rash because you’ll regret it down the line. Go down another notch perhaps if you feel you should, but don’t stop altogether as it’ll be tricky getting a stable dose established. It will come right, don’t worry. T3 and NDT is tricky but worth it in the end. Another approach would be to stop for one day then resume dose next day as you might then be able to feel T3 reduce, but you may feel worse. Slow adjustments usually best. Think antidepressants may make you feel worse. Hugs x

Are you still on 3 monthly injections of B12? Because if you pop on over to the pernicious anaemia society forum, you’ll find lots of people who say that 3 months isn’t often enough. Some people need daily jabs. With B12 levels blood tests are very little use when you’re having B12 shots - they’ll always read high - but it doesn’t mean that your body has enough B12 to work with (I don’t quite understand it but I’m sure they’ll explain if you’d like to know more?)

healthunlocked.com/pasoc

pernicious-anaemia-society....

pernicious-anaemia-society....

Angie_Phalange
Angie_Phalange in reply to Jazzw

Yes, still getting 3mthly. I seem to have B12 absorption problems but I didn’t have the intrinsic factor when tested.

So maybe not technically have pernicious anemia. Endo says that Hashis and PA usually go hand in hand

I have bought needles and ampoules online to self inject but am worried about overdosing. I will check out the PA forum a bit more. Thank you for the links. x

My heart goes out to you I can feel your pain when I read your post ! I can relate to this feeling of despair that’s just how I’m feeling too and many others you are definitely not alone .

Try and keep positive, it’s so hard my family don’t understand how debilitating this disease is my daughter said to me the other day can you go a day without mentioning “Thyroid “ I was so upset and crushed I feel so alone too ! Have you got any close girlfriends or close companion who you could go and see or take a break ? When I feel very low I go for a walk to the park with my friend and her dog (wrap up warm) it does help to get out of the house :)

Good luck and stay strong lots of people on this forum will support you or PM me if you need a chat take care thinking of you sending hugs 🤗 x

Thanks. Feel at rock bottom. I don’t really have anyone close. I don’t want to be a burden to anyone but have also found that friends can be fair weather. I don’t think people fully understand how much of an impact this illness is having. I feel bad as I know there are lots of people worse off. I’m trying to conceal things as I don’t want to worry my daughter. I know my GP is going to suggest anti depressants and I may have to consider it. x

I have just weaned off Sertraline,after 18 months.It was a last resort,after 2 years on T3 only,following 16 years on T4 only.I suspect I was on too high a dose of T3, but I had been this low before,on T4.I too have a history of PTSD & prolonged stress.Sertraline is recommended for anxiety & PTSD.I couldn't face a repeat of the prolonged agony I went through 2011-2013,the last time I was like this,so asked my GP for it by name.Luckily it worked well for me with side-effects I could cope with.My niece takes 200mgs daily,but I did best on a low dose,after stabilising on 25mg/50mg alternating.I was skin & bone when I started it.18 months later I need to lose a stone!I will take it again if I get in a similar state.Its been a total godsend for me.I have been a member of TUK since it started(off-line!)& I was doing everything recommended on here & STTM.I believe the X factor is "Complex PTSD"Friends & family tried to help,but only my niece recommending I try Sertraline pulled me out of that state.

Thanks for sharing. X

My point being,that SSRIs are not to be dismissed,when every other thyroid strategy has failed & one is feeling desperate.I was far too scared to take them in 2011.

My mindset was that SSRIs are to be avoided at all costs,especially if one has an underactive thyroid.I believed that they are the dangerous invention of evil scientists.

Now I know differently.

Unfortunately,they are being offered to people who are not depressed or anxious,to try & solve other health issues that GPs don't have the time or training to help with.This has given them a very bad name,especially on a thyroid forum.

I am so grateful to an ex forum admin,who pointed out that there is a place for them in certain circumstances.

yes, I am thinking must avoid them as I’m scared, but I need help. My body is taking me apart and I’m struggling. I will discuss sertraline with my GP on Monday.

I am so sorry that you are having such problems, and I understand completely how you feel. For many years my daughter's health was declining and we assumed once we discovered that she had thyroid dysfunction that her health would improve when she was correctly treated. However, some years, several private doctors and countless useless and expensive tests later we discovered that we were very, very wrong. Taking the same thyroid and adrenal tests over and over from different companies was a complete waste of money. Taking advice from doctors and advisory groups who are not looking for the reason for the thyroid dysfunction was a complete waste of time. I used to be one of those "advisors" and I'm embarrased to admit to some of the potted advice I handed out! Maybe it worked for some, but for many it does not, especially those who have Hashimotos. I now know better. We have found answers for my daughter, but we had to think outside the box which is something UK doctors will not do. I have read countless books and papers and we have been to the USA for the tests and help my daughter needed. She is now on the long road to recovery, made longer because her diagnosis and treatment were delayed too long. Can I suggest that you buy this brand new book - "Toxic - Heal Your Body" - by Dr. Neil Nathan. It is a wonderful insight into what toxins can do to every part of your body written by a very special healer. Jane x

Naomi8
Naomi8 in reply to janeb15

Looking at his website now.many thanks

janeb15
janeb15 in reply to Naomi8

I hope you find what you're looking for. He is a brilliant and very kind man. Jane x x

Thank you Jane, I am so pleased your daughter is recovering. You are a fantastic mum. I will check out that book. X

It's my pleasure to help. I know how you feel. Let me know how you get on as I have other book recommendations too. Jane x

When I read your previous post you were only on NDT for two weeks before your blood test. You should have been on the same dose for 6 weeks before testing. Please take the test first thing and fasting with only water, leave off NDT for 12 hours prior to the test.

2.5 NDT per day seems quite a lot especially as you are losing weight. When I was losing weight taking 3 grains per day my FT3 was very high over the top of the range.

Perhaps you need to reduce you NDT to 2 per day for a six more weeks and then retest. Good luck it's a long long road but you can feel well again.

Thanks. Yes, feel I’ve over medicated.

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