I posted late last night asking for advice about re-starting meds. Felt rough when I woke up, as usual, then not too bad after breakfast and a shower, now feeling absolutely dreadful after lunch. Have read some previous posts which have got me really worried about having stopped my meds for 5 weeks. I wasn’t feeling any different so I was trying to hold out to do a blood test tomorrow to get a new baseline. But now I am feeling terrible so wondering if I should just take 50ug Levo just to get started again - even though I ate an hour ago. Or a tiny bit of T3 ? At the moment I feel really nauseous, tummy has gone dodgy, quite achey but also jittery and dizzy. Some quick advice would be great.
Help ! : I posted late last night asking for... - Thyroid UK
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AliF
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Well, it won't do you much good to take levo, because that takes a long time to act. Not even sure if T3 would help. You could try it but it will probably skew your blood test results, given that you haven't had any for five weeks.
Although stopping your medication for 5 weeks was obviously going to make you feel awful, it's not something to get over-worried about. Don't work yourself into a tizzy over it. I doubt it will do any permanent damage. 
Thanks Greygoose. I love your replies. I started worrying because I read posts on here about going into a coma and doing permanent damage to liver and kidneys. I had TSH and T4 measured on the NHS about 10 days ago. I’ve asked the consultant to call me back today with the numbers ( she’s a rheumatologist rather than an
Endo) but her sec said they were only a bit out. Tomorrow a blood testing kit will arrive from
Blue Horizon which I can do early Wed am ( post here comes mid morning sadly ) and send off. Then I can re-start. I was thinking 50 ug Levo for 2 weeks then add another 25 ? Then not sure after that. Wait and see how I feel? Test again ? I have 20 ug T3 and 1.5 mg oestrogen gels too - which i’d Just switched to from patches. T4/T3 dose had stayed the same. Part of stopping was to see if they were interfering with thyroid hormones. Something was really tipping me over the edge and making me very jittery with palpitations and generally feeling very unwell and I didn’t know what.
Feeling calmer already with your reassurance. Tricky all this when you are on your own.
It certainly is! But, you're not on your own, we're here.
Thank you GG. I don’t know what I would do without you. Does my plan sound good ? Always have the phrase “ low and slow” in my head. Any advice gratefully received. Trying really hardvnot to get in a tizz.
No, don't get in a tizz, whatever you do! It sounds like a good starting point. Then, you have to play it by ear.
But, only start one thing at a time, and see how you react to it.
Levo may be your problem.
Do you know if you adequately convert the storage hormone T4 to the active hormone T3.
Why do you want a new baseline, I would have thought testing T4 and T3 and nutrients (vit D, vit B12, Folate and Ferritin) would have provided sufficient info to make adjustments without stopping meds. Your body, like you is confused!
I'm no expert either... just learning and improving en route to improved health
I doubt there is the quick fix you hope for, sadly you may just need to ride the storm until you get results and start medicating again
Suggest you have blood tests done asap and post results with ranges, for comment. This is where you will get the best advice!
Good luck
DD
Thanks DD. Too right I am confused. Nothing really seems to make me feel well. The best has probably been in the last few weeks, at times here and there, when i’ve been taking nothing! No hormones and no supplements.
I’m not a great converter which is why I added in some T3 — prescribed by an endo and on the NHS. I wanted it to really make a difference but I can’t say I noticed a dramatic/much/any really improvement.
RE all the other vitamins etc I do take Igennus B sometimes ( previously had sublingual b12) but not all the time. And selenium
ditto. In the same way, I take them
for a bit, don’t notice much difference, start to feel
worse so stop all the supplements and then sometimes I find after that I start to feel a bit better for a while.
I struggle with iron because being quite veggie there is no quick fix for that either. I eat lots of nuts and plenty of veg but my ferritin seems to always remain stubbornly low.
5 years of feeling like this takes its toll. Physically and mentally. And doubly difficult on your own. The family I do have left, very few, don’t understand because they have friends who are hypothyroid who take Levo and are absolutely fine - beautifully slim and running 10 miles regularly so why aren’t I ok too. It doesn’t help. I get very very down sometimes and just want to feel ok. Not brilliant. I’d settle for ok.
I am a vegetarian and managed to raise my ferritin by incorporating prunes/prune juice, dried apricots, a little dark chocolate, nettle tea and molasses in my daily diet. These are all rich in iron. Like you, I eat lots of nuts which are good for you but I don’t think they contribute much in the way of iron though every little helps! I stir molasses into my porridge as I can’t take it from a spoon. Porridge seems to mask the taste quite well, but if you like the flavour you could dissolve it in hot water, maybe add orange juice for better absorption of the iron.
I hope you are feeling better and not so anxious now after all the reassuring and helpful replies.
As you say it’s frightening to cope alone. We are lucky that with all the lovely people on this site we don’t have to😊.
Take care. I hope you start to feel better soon.
Best wishes
Caroline
Thanks Caroline. Not as anxious that’s for sure. Feel a bit better for a couple of hours, then feel worse. Right now I have the hypo thyroid wiped out feeling and aching forearms, fuzzy light headed tired but a bit wired. I’ve felt better —but have also felt worse taking Levo and Levo/T3.
Thanks for the tips on iron. I’ll certainly try the molasses on my porridge trick. Do you just buy molasses in Sainsbury’s cake making aisle ?? I thought they went out with the ark ! Must try prune juice and dried apricots too. As you say all helps.
And the people on here are all lovely. I’d be a gonner without them.
Glad you're feeling less anxious at least. Hopefully you will improve in other ways once you are properly medicated! Just take it easy for now if you can and try not to do too much. I am a worrier too so I do sympathise. Lots of advice and guidance on this site though, so it's my first port of call when I am concerned about anything. Everyone always seems so ready to help!
I buy Meridian molasses from Holland and Barrett - £2.99 for a big jar. They also sell unsulphured dried apricots, prune juice and prunes - just go easy on the last two things though until you find how they affect you. Very helpful for constipation but otherwise can have you running to the loo all day. Not so good then😐.
Wishing you all the best
Caroline
Thank you for all of your advice. Think if I sat in the chair all day and did nothing i’d probably be ok. But I cant - i’m a doer as well as
a worrier. I’ll go easy on the prune juice! Feeling weepy now too because everyone is being so kind. People on here are soooo nice.
Being hypo and not responding to levo is a really rotten deal, it took me about 40 years (yes, 40) to find out why my health was declining and despite scopes scans meds and treatments nothing showed up, and I just got slowly worse. I was never convinced I had either fibromyalgia or CFS...all the GPs could suggest!
I'll try to make this brief...ish!
A year ago I felt so bad I could hardly function and realised I had to do some research since medics had no answers... or spend my days sitting in a corner!
I found TUK, had the private tests advised including the thyroid genetic test and just very carefully followed the excellent advice I was given.
Turns out I have a faulty gene DIO2 which results in poor conversion and since I inherited it from both parents it means "a double whammy'.
I then discovered T4/T3 wasn't helping, the T4 that wasn't being converted was building up and (I understand) becoming toxic. T4 had to go! It took a week or two to rid my body of T4....it has a long half life.
I bought T3 and started very gradually to dose with T3-only and 3 months later things are improving.
Now my supplier has no stock of T3 and getting it from the NHS is well nigh impossible....sod's law!
I'm 73 and fully understand how dragged down you are feeling, I did a lot of research because I feel knowledge is power and that has enabled me to take control of my health.
On the whole people don't understand and I've given up trying to explain to people who ask because most are not really interested!
You are not alone ... I used to sit, unable to sleep, in the middle of the night reading TUK posts, articles and research papers looking for answers, asking questions and appreciating the advice and support offered....
I'm not sure what I'd be like now without members here....and I should give my supportive and long suffering husband a mention too!
As your conversion is poor it might be a good idea to build up your nutrients, they all need to be at optimal level to support conversion...it takes time.
Do you monitor heart rate and temp....knowing those are in ok might stop you worrying?
Don't accept the usual response from medics that your results are fine/normal.....most of them haven't a clue! Sad but true.
You will soon have new results and lots of advice from people here which should quickly reassure you that you are about to turn a corner...but it takes time
Sorry this a bit of a rushed ramble..hope something in it helps
Best...
DD
Thanks DD. I do the same. Sitting awake reading posts in the middle of the night with everything going round and round in my head - why do I feel so awful much of the time, what can I do to feel
better, is it the synthetic hormones making me ill ( that’s why I stopped everything) or do I need more of them. The Dr’s don’t really listen to what I’m
saying just carry on blindly doing what the blood results indicate.
I have T3. Don’t really know if it works for me. I wish I could transfer it to you. Thank you for taking time to reply to me. Much appreciated.
Having slept on things I wondered how you knew about your T4 building up and becoming toxic? I don’t think I have that problem but I wanted to know if that was shown by free T4 levels from a blood test ? And who spotted that as a problem ? Interesting to know these sorts of things.
Lousy memory...think I read it in a research paper. ...may have been one from Panniker et al.
Perhaps I should have written "toxic"
When I discovered that my conversion is poor I initially added T3 to my T4 and tweaked dose amounts and times.
After several months it became clear that treatment wasn't working. I knew I was not overmedicated but I was getting palpitations etc then someone suggested it may be the T4. Also, palps can also be a sign of under medication!
I then had the thyroid genetic test (as above) so
I stopped all levo and moved to T3-only nearly 3 months ago gradually increasing the dose...the palps stopped immediately so I was sure the culprit was T4. I constantly monitored temperature and heart rate to ensure I wasn't overmedicated. I'm nearly there but my temp is still on the low side so I'm about to increase T3 again.
Apart from being diagnosed initially about 20 years ago when I was prescribed Levo I just did as GPs advised, bad mistake!...until about a year ago when my health became so bad that I started researching, found TUK, read heaps and decided to self medicate.
From that point I took control of my thyroid medication. My GP is very understanding but admits her thyroid knowledge is poor, she is no longer allowed to test T3 and cannot prescribe either so watches from the sidelines and I keep her informed in written updates.
Having read numerous stories of bad experiences with endos I have no wish to join that number if I can avoid it.
So, to answer your question...I'm responsible for the decisions made, supported by the amazing people here and in the knowledge of my GP who seems happy with my progress.
I'm probably a bit of a maverick and my homozygous DIO2 gene polymorphism puts me in the minority.
Panic not! Stick with us and VERY carefully follow advice from people like greygoose, SeasideSusie et al who are a fund of knowledge....they all played a huge part in my improvement.
Good luck
DD
Thanks DD. So your blood test results didn’t reveal your T4 problem. You did the genetic test, someone on here suggested T3 only and you are work in progress but feeling a lot better —is that about right ?
I love Greygoose and Seaside Susie. Loads of knowledge and good practical advice which I try to follow. Lots of others have tried to help too although my blood test results do seem to fox even the best of them at times and they seem at a bit of a loss as to why I still feel so rubbish — other than my ferritin is pretty much always a bit low. That has got to be a focus too for the next few months.
I’ll start 50ug Levo again tomorrow and see what happens for a couple of weeks. I keep a diary of my symptoms but I think I just swap hypo symptoms for different or extra symptoms. I’ll try and follow things closely. Thanks again DD.
Hi
Don’t listen to all the 💩, from the NHS.
If they were that worried about patients they wouldn’t let there TSH get to 10 or over before stepping in and treating them.
I was ill for a very long time with thyroid issues before I was diagnosed (as many are) and then when diagnosed because I didn’t hit the 10 or over figure on my TSH I was left to get worse.
I’ve had a well check when I hit 40, (January) and my kidney and liver results were out of range. I have brought this up several times with several GP’s and they make nothing of it. Don’t panic.
I stopped my Levothyroxine ages ago because it was not suiting me, but started to self medicate on T3. I was doing well, but I’ve hit a brick wall.
I am struggling with neck stiffness/ pain, blocked ears and ringing in them, plus intense headaches.
I thought it would be a good idea to stop my T3 as I wondered if this was causing my issues.
I stopped for a week only, and I still have the issues, but I’ve noticed that when I took my T3 the pain got very intense. However, I was terrible without any medication, I was confused, anxious, crying all the time, I couldn’t string a sentence together, it was awful and a stupid thing to do.
Anyway, I did a blood test and my TSH had risen to 6 from being suppressed and that was just in a week.
My GP gave me a lecture about stopping my Levothyroxine, (they saw I haven’t collected my prescription) and told me to take 125mcg in one go????.
I had to point out that it took me months to get to 125mcg as my dosage was increased by 25mcg every 6 weeks, and was she really telling me to take 125mcg in one go.
I didn’t tell her I stopped Levothyroxine ages ago.
I’m now trying NDT, as I think that something in the T3 is not agreeing with me.
As Greygoose has said Levothyroxine is slower to act in the body, T3 does give you that boost faster than T4.
When I was on Levothyroxine I was advised on here to get your TSH to 1 or below on Levothyroxine and then see how your T3 & T4 are responding once your TSH is 1 or below.
If the T3 results are not doing well, then try adding T3 to the mix, 1/4 tablet of T3.
Maybe the experienced members could confirm that?.
Best wishes
Peanut31
Hi AliF, don’t beat yourself up, you’re doing your best to get well !
I think starting with Levo only may be a good plan - as your tsh may have risen while you’ve been off your meds so you may get better conversion than before. Also, I find that Levo can have a fast action at times, though I know not everyone finds this. Levo as long acting will provide some much needed stability too.
Starting Levo and T3 together, I would find confusing - if I change both at the same time I get a ‘everything going upside down’ feeling. Having said that, we’re all different. Trust your own instinct about what’s right for you. Good luck x
Thanks Aurealis. I know when I first started taking Levo I felt a marked improvement within a few days. Just a pity it didn’t last. Once I do get these results it will be interesting reading. My rheumatologist’s ( long story - GP referral as refused to send me to an endo) sec told me the results she did 10 days ago were a bit out - but not very. Thank you for your kind words. Much appreciated. I sure am trying - as hard as I can !
Thanks Peanut for replying and I’m
sorry to hear that you are in a similar boat to me ! I too now have bad tinnitus and sometimes a stiff neck, although that may be from sleeping funnily!
My numbers are usually fairly ok. TSH suppressed but not non- existent and T3 and T4 within range, both could be a bit higher which is why my endo was going to increase my T4 but I didn’t take it - felt dreadful so stopped everything- T4, T3 and HRT. Mostly i’ve felt a wee bit better. But now on a rollercoaster. One thing I do know. People on here listen much more than the medical profession and secondly they are much more knowledgeable mostly because of their own experience.
I’d like to know how you get on with NDT. Might be my next step too.
Do you know if your B12 levels are good? Tinnitus was one of the symptoms I had really badly until I found my B12 was really low. Once I began injections the tinnitus decreased, although it does come back if I am due an injection or unwell.
Thanks MariLiz My b12 may be a tiny bit down but sometimes it is fine so I don’t think it’s that. It is variable. Usually seems worse in the morning but that may just be because it’s quiet. I wondered if it was a side effect of the Levo but after now nearly 6 weeks off it I still have it. Not sure if it has improved. Possibly a tiny bit. I take b supplements some days. They don’t seem to make any difference.
I think i’m going to concentrate on iron for a while as that is consistently on the low side.
B12 needs to be optimal...not "a tiny bit down"
Use search tool above to check previous posts
Thanks DD. I’ve had advice from Seaside Susie about my b12. I was taking methylcobalamin sub lingually and I think I had a blood test where b12 was ok so SS said just to take it couple of times a week as a maintenance dose.
I probably trailed off - next blood test was low. SS or Marz said to take igennus b complex which I started but at the same time I was altering T4/T3 and switched from HRT patches to gels. Too many things going on so I stopped.
Often a problem, lots of variables and not sure which one is the suspect in which symptom !
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