Before it is pointed out that I am a idiot for stopping my thyroid medication, I will agree 100% with you.
The reason I stopped was I have been having intense neck pain/headaches and blocked ears for weeks now and I thought that perhaps this was the result of my T3.
They got so bad that I took myself to A&E twice, I couldn't take the pain anymore. It was effecting my day to day living.
A&E was the last place I wanted to go, but, as our walk in centre has now closed and I couldn't get a GP appointment I had no choice.
First time I was told I had an ear infection and given antibiotics and this was the reason for the neck pain, they didn't help.
Second visit, the A& E doctor told me I had a bulging ear drum sent ENT down, they looked in my ears and said no problem.
An MRI head scan was given, all clear, bloods taken 'normal' but then told I may need a lumbar puncture. Then after discussions and hours later, I was sent home with strong muscle painkillers and booked as an out patient appointment for a neck scan (booked end of November)
Nothing has improved, so whilst all of this was going on, it appeared that when I took my T3 (self medicating) an hour later my pain got worse, so I thought I would stop my T3 altogther.
I was originally on T4 via my GP, but I never felt well on it, despite my blood results looking good (I posted them on here for comments) so I stopped it back in August as my GP was getting concerned about my TSH results (was on 125mcg of Levo), and he wasn;t going to increase my Levo, my T3 results always seemed low as well.
I then started on T3, slowly, reading Paul Robinson book etc and detailing vitals.
I was doing well, when I say well, I felt better on T3 than T4, however, not perfect every time I tried to increase my T3 (was on 37.5mcg spilt in 3 dosage) my headaches and neck pain seemed to get worse.
So I stopped my T3 for just over a week to see if it helped my neck pain etc get better. It didn't.
I did a finger prick test on Monday and I am shocked at the speed in which my TSH has gone back up, as in september 2018 it was:
The results below are 52 days on T3 and eight weeks since stopping T4.
September 2018 results.
TSH 0.489 (0.27-4.20)
T4 1.540 (12.00 - 22.00)
T3 4.27 (3.10-6.80)
B12 112.00 (25.10-165.00)
Folate 11.22 (2.91-50.00)
Vitamin D 116 (50.00-200.00)
Ferritin 125 (13.00-150.00)
Antibodies 201.00 (0.00-115.00) I have hastimoto's gluten free since sept 2017)
peroxidase antibodies 50.6 (0.00-34.00)
October 2018 results on T3 only, but stopped a week before blood taken
TSH 6.68 (0.27-4.20)
T4 11.400 (12.00-22.00)
T3 5.79 (3.10-6.80)
Considering I was taking T3 only 37.5mcg the T3 results don't look very good.
What I have now done is gone back on 50mcg of Levo and adding T3 slowly again.
I have high cortisol morning and mid morning and low DHEA and other hormones are low. I am taking Ashwagandha and ginseng and Turmeric for the inflammation which I think is the issue with my neck pain?
I am also seeing an ENT specialist privately and having acupuncture. I have also booked to see another Endo privately, but I can't see him until December. He was on the list here and some people has mentioned that he is very good.
Has anyone got any ideas. I am freezing cold, weight gain, hair loss, blocked ears, ringing in ears, no energy, muscle pain, you name it I have it.
Best Wishes
Peanut31
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Peanut31
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I get neck pain too, can't stand a cold draught on it, even in bed if I don't bring duvet right up and my breath goes on my shoulders it hurts, like a cold ache. I can't stand aircon in the car that sets it off. A lovely gp who sadly left practice said it's part of underactive thyroid, the neck muscles go into a spasm. That was the start of the journey when I first had Thyroxine.
Good luck with all the appointments I hope they can help you 😀
I am overactive my t3 level was 24.2 I reckon I have been overactive since the end of July when my symptoms progressed to server shaking and fatique but I also had gone partially deaf in my left ear I had pain in my kneck and I felt like I was on a plane and needed to pop my ears!! I am still like this...like you I saw an ENT who said my left ear drum would not pop,,,so we will furnish you with an earring aid..what the hell!!! I went partly deaf over night..I do feel that this is all connected to the thiyroid but no one is taking any notice and my next ENT app is Feb next year!!!!
I hope you get sorted I just wish doctors and consultants would sometimes listen to their pacients 😠
I'm not having the neck pain and headaches like you but have had ear ache for a couple of months now, especially since starting on T3 towards the end of September. I had food poisoning last week and since then my indigestion feeling in throat and ear ache has been much worse.
I didn't know if you've ever taken amitriptyline? I've started a low dose, just 5mg each night as when I took this years ago for a chronic cough, it calmed everything down. I'd researched other causes as was getting indigestion and heartburn quite badly then and found out about the vagal nerve being inflamed and causing those symptoms. Amitriptyline is something that can calm it down but so far, there's been no improvement, whereas when I took it for the chronic cough, it was better in 3 days. It might still be worth a try with you though.
It's good that my feeling of suffocation is better but I hate feeling like my ears are all swollen inside, like I have a virus. It's making more tired and grumpy than usual.
I hope you're feeling better and good luck with your appointments.
I have that feeling that my ears are swollen on the inside. The left one is worse. Every time I’ve mentioned it to a GP, they look inside and say there’s nothing there. (Prob no brain either 😂).
This has been happening to me since before I was diagnosed with Hashimoto’s. So I feel it is a hypo thing for me.
I get severe neck and shoulder pain (sets off migraines) since my hysterectomy and before I was confirmed with Hashimoto’s. I have taken amytriptaline for a year or so twice. It definitely calms the neck and shoulders down (it was originally invented for migraine prevention).
I’m not on it now, but the other evening I was so fed up with shoulder pain, I took one. (10mg) slept like a baby and the shoulder pain dramatically reduced. I’ve got 6 more, so will just take one if desperate.
My endo thinks I should see a neurologist, I might well do, but I actually think it’s to do with hormones more than anything.
Peanut31 hope you find a solution and feel better soon 🙂
Amitriptyline definitely seems to help reduce inflammation and as we have so much inflammation with Hashimoto's, it does make sense to take it sometimes. With general aches and pains, particularly neck and shoulder, I've found it's definitely better when my vitamin D level is higher. When I worked in an office, it was always uncomfortable so really wish I'd known then.
Is your vitamin D level good? I try and remember to take it twice a week with k2 and magnesium.
Yes, I’ve learnt that when my vitamin D level is at least 80 my migraines tend to be less severe and less frequent.
Mine was down at 21 when the nhs endo tested me. Not one GP had tested or mentioned vitD levels in the 5 years previously that I had been suffering (prior to getting diagnosed for Hashimoto’s too).
If I had known about it back then, maybe I could have spent fewer days suffering and in bed (missing out on daylight and life).
The NHS is so short sighted. I accompanied my husband to see the GP this week and I asked if he could have his b12 checked, as well as a full blood count. As he hasn't had symptoms recently, he refused but I explained that a couple of years ago, he had numbness in one hand but that wasn't a sufficient reason for them to test him. But surely it can't cost the NHS much more?
That was so low of course when your endo tested you. Mine wants me to check mine again so pleased that he's on the ball with it. How frustrating that you could have saved yourself so much suffering and pain. The training that GPs receive so needs to be more holistic.
Most vitamin checks etc have been driven by me. Luckily the nurse will add vitD if I mention it needs to be done.
Unfortunately my GP is obsessed by my low TSH (I’m on some T3 so it really is irrelevant). I want to up my meds, but will have to wait 2 more weeks, till I’ve had her blood test done. I’m feeling very fatigued at present need to sleep/rest at least 9 hours a night. Once the blood is taken I’m adding a tiny bit of T3. Then I’ll see what the results are and make a decision from there. (Maybe need a dinner with liver too).
Let’s hope things change soon so that thousands of people can get back to living again. 🙂
It maybe that synthetic T4 & T3 are not compatible with your body & therefore causing all these horrible symptoms. My advice would be that you were right to stop & to ditch all further synthetic meds & go onto Thyro-Gold as it's thyroxine in its natural state & it's unadulterated & has all the T1, T2, T3, T4, T5 & whatever else science hasn't yet discovered but needed by the body, nontheless! Start with one capsule of 150mcg for two weeks & then add another until you feel good...and you will feel good because you've changed your diet & lifestyle to support your body in its healing process. I too was on synthetic T4 for 20 years & was not getting better but was getting worse every year so this year I stopped all my T4 (& all the other pharmaceutical drugs because of their horrendous side effects) & went on Thyro-Gold. It took me 2 months to get to the correct dosage for me (I had a full thyroidectomy) & now after 10 months on just Thyro-Gold I feel & look so much better! The brain fog has lifted, the ear & neck pains have gone, the weight is dropping off, the hair & nails are growing back & I feel I have more energy & I can cope better with emotional upsets. My body temperature is better & I don't have freezing cold hands & feet anymore! Dr John C Lowe was a highly respected advocate & advisor on Thyroid UK & he was the one who sourced & made Thyro-Gold! I can't thank him enough, May God bless him! 😇
Hi Tia, I’m just reading about Thyroid-gold and it sounds amazing. Can you buy it in the U.K.? Is it available for a Doctor/Endo to prescribe on the NHS? Many thanks, Tillie.g.
Hi Tilleg, no you can't get it prescribed because it's counted as a 'supplement' but you can self medicate with it & don't need doctor's to prescribe it as Dr John C Lowe purposefully did that so that the FDA wouldn't class it as a drug & no doubt then ban it. He wanted to make it available to the general public so that they can heal & actually get better from thyroid diseases. It's available on his website (run by his wife - Tammy Lowe) 'naturalthyroidsolutions.com' check under Thyro-Gold & you can order it online. It's only available from the USA so is a little expensive but what's your health worth? 🇺🇸
I taken some T3 this afternoon and after a hour of taking it my neck pain has increased and stiffness in my neck is bad, my scalp feels tender and my ringing in my ears has got louder.
I’m on T3 from Greece. I’m starting to think T3 is not helping.
Have you any other ideas on what I could try.
Levothyroxine makes me feel like a zombie and give me brain fog.
I'm sorry I didn't make it clear but Thyro-Gold is NDT made by Dr John C Lowe & is the purest form you can get, check for yourself on his website 'naturalthyroidsolutions.com' I wish you health as that's your true wealth! 😇
Have you checked the brand names on the T4 & T3, for inactive ingredients. Many people react negatively to them but, after trying either generic or synthetic may feel better on one or the other only. May peace be upon you.
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