I’ve come off thyroid meds under my GP who wants to get baseline as I was self treating before. Been off now 10 weeks and bloods showing
TSH 2.24. (0.35-5)
Ft4. 9.7. (9-21)
Ft 3. 3.3 (3-6)
Feeling tired, poor brain function and other usual stuff but one thing I’m having is real knee pain and I’ve not injured it or anything at all. It’s just gradually come in. Is this kind of thing common or anyone had this happen?
Looking at going back on them now as can be waiting around forever for this lot to do anything.
Thanks
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ter1461
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How much longer till GPs doing something... have you self tested for thyroid autoimmune antibodies (TPO and TgAb) ie Hashimoto’s too? He might not be convinced you need anything as results ‘are in range’, tho forum members would say your thyroid is struggling. I have knee/ leg/ hip pain and stiffness I put down to hypothyroidism ( but also after 13 years on levothyroxin also looking at whether it is the T4 giving it me...but that’s a different story). Persuade him her to do antibodies test ( probably only get TPO on NHS ) and get your vit D, b12, folate and ferritin tested as low gut absorption, with low nutrient levels, are characteristic of Hashimoto’s and might be causing the symptoms too. If your doctor won’t test consider private test from Medichecks or Blue Horizon.
Yes I have TPO 115 and have sat there for many years too. I self inject b12 as was deficient and folate Vit D and iron good. I’m also treating my all lows on adrenals with adrenal cortex. Just the thyroid bit missing now.
I just wanted to know about the knee thing as I’ve done nothing to it and it’s not budging with pain. Could it be symptom of low thyroid?
Really!! I’d read some in that myself but thought maybe not but then probably knowing how crap I feel also. When people are optimal etc and go on hormone etc do can these things rectify then?
Yes I agree the knee pain can be a symptom of hypothyroidism. I had undiagnosed feet pain for about 25 years before the doctors finally listened that I had a thyroid problem!!! My pain has gone with thyroid treatment and once I stopped my thyroid meds briefly as I had some difficulties with them (long story) and my feet pain started to return. So I quickly found a solution with my thyroid meds and started them again and bingo pain gone again
Incredible. Yes I need to start again. I’ve a feeling this is going to hang around with all the other building up health stuff being off them. Only issue I’m concerned on was my hair drops whilst on it. Not the usual iron stuff but I’m having some gut tests etc to look into that side of things
Some symptoms can overlap both hypo/hyper symptoms .
It is dangerous to stop thyroid medication and can lead to mixodeoma crisis. Happened to me and my health had still not recovered 18 months on. I doubt your GP will do anything.
I totally agree with mandyjane. It's shocking your doctor did this to you. I went through something similar but by myself because I was having side effects from my thyroid meds. But I quickly found a solution and started new thyroid meds so it was a temporary blip. It's criminal that doctors can blindly mess with our lives by telling us to stop meds we need for our survival. Why did you decide to stop self treating may I ask?
I didn't have joint pain but, several years ago began to suffer from stiffness - needed to slowly straighten myself up again after even half an hour sitting down. I assumed it was just old age and thankful not to have any real pain with it. But, after several months on thyroxine, I suddenly realised the stiffness was gone!
I have joint and muscle pain in a lot of places. I've also started getting quite spontaneous injuries to my knees. Last year I dislocated one just getting up from seated, and a few months ago injured it again just standing still and something popped. It was after a terrible day in hospital and I was particularly exhausted, so I consider both injuries to be caused by being hypo.
Those results look really awful, you poor thing both freeT4 and freeT3 are right on the bottom of their ranges. Its quite unusual to have both of them so low. These show how much thyroid hormone you've got available. Healthy people would have then close to the middle of the range, and people on medication usually feel best with freeT3 near the top of the range. When on Levothyroxine only that requires freeT4 high in range, too.
But unfortunately for you your TSH has not jumped up very high to complain about it. There is quite a bit of individual difference in how responsive TSH is. It can be very sluggish and slow to increase, or even just never get very high at all as after being messed about for years, or overall illness. Unfortunately doctors consider it gospel
I agree with others that this is a cruel and useless practice of your GP's. But its something that crops up on the forum from time to time. I'd be expecting you to feel absolutely terrible, but is knee pain the only symptom you've had?
I can't believe the doc even suggested you go off meds. Did you have any lab tests while self treating? He should've had them done while you were self treating to see where your levels actually were. What an idiot. Can't believe they want to play with our lives like this.
I have all my labs when self treating but of course NHS GPs hands are tied here. My doctor is actually really good but usual training in thyroid unfortunately although he did make referral to Endo which I’ve received appointment for today but it’s not until 23 April. I’m afraid I won’t manage to stay of thyroid hormone until then so I will start treatment myself again. No other choice really.
Yes, knee pain when I was under medicated on Levo. It cleared up when I increased my dose to a point where I was generating FT3. It went away completely when I switched to NDT (extra T3). It has returned recently because I could not increase my NDT since anything over my current perfectly OK dose sends my blood pressure up.
Thankyou so much for this. I suspected it was thyroid as I haven’t even moved or injured it in any way at all and my hypo symptoms are just increasing more and more. Along with what seemed like my hand curling into a claw at one point t tonight like about to go into a cramp. Anyway back on Thyroid meds I think!
Is it long before your 10 weeks are up? I’d try and hold out. Your current readings may reflect your self medication is still in the system. Your readings may get worse after 10 weeks, but then he’ll know what he’s dealing with. I can understand why they need to do this.
If you really can’t wait, before self treating again, why not try and see him/her again and tell them you feel really bad and think you need to start on a small dose - and take it from there? I’d be worried he might abandon you.
If you have antibodies, your thyroid won’t improve, so it’s very likely you’ll need medication. I was only borderline, but my GP started me on levo because of my antibodies. My dose has increased over time.
I’m more likely 11-12 weeks now and I’m feeling awful and random pain through body so it’s not good. Definitely getting worse but I’ve been referred to Endo but appointment isn’t for another three and half weeks. I could go back to my GP and ask him to do bloods again as I now feel suddenly worse than before so maybe it’s dropped more in couple of weeks since last tested.
My GP won’t abandon me and he is a good one I have to say but said his hand are tied regarding giving me a trial hence Endo referral. I’m suspecting unless I’m below ranges etc he can’t do anything but refer me 🤷♀️
Yes I'd definitely go back and tell him how bad you feel. I can understand they need to know where they are starting from, but he won't realise unless you tell him. Hopefully he will start you on meds asap.
You can get a baseline from any point even on meds.
The only thing it shows is the level of your tsh.
My t3 was nil so there is no way I’d wait for that to drop again.
Your gp sadly is wrong it can take 6 months plus for a tsh to be back to its normal mess. Who’d wait that long?
I am shocked but not surprised they asked you as everything is tsh driven.
My concern is it’s not high enough on its own( if they ignore the low t3 and T4) to give you meds. Also specialists can be great or awful. There is no guarantee they will give you anything either.
I really wish you luck and and glad you’ve restarted them.
It’s s good idea to monitor your temperature with a basal thermometer now you’re starting again.
Www.drmyhill.co.uk and in the search engine on the home page type in orchestra. Great article on achieving good health.
Diet
Absorbtion
Vitamins
Then adrenals and thyroid meds.
She’s a top endo with 15 books under her belt.
Keeping record helps reduce the need for too many blood tests and shows if the adrenals are out.
The knee can be down to the meds and to low magnesium.
If you want to test that it’s a red cell magnesium test you need. It’s private though. Also covered in her blogs under magnesium.
I know that inflammation can also lower tsh and other things. Have you read this also or know if any other reason why my tsh isn’t rising. Could it be a problem with pituitary and how would they even know that. My tsh has Rosen’s twice to almost 6 over the years but never acted on.
Very high inflammation can. So an esr of 60 ( say range 14-20) could affect it.
I had this conversation with a colleague a few months ago, following someone’s sudden suppressed tsh when they’d been stable on the same meds for years.
I’d say stress was a major factor and another illness like glandular fever, cancer etc. Also some meds. Your body could be stressed with no meds, thats different to stress from a situation.
Take care and if need be do your own thing. Your health is paramount not a tsh result.
I have to disagree with one of the comments it’s not at all rare to have such low t3 and t4 readings. Without my I’d be nil t3 and say t4 8.( that’s where they were initially but thankfully tsh had not been invented lol).
Hi , exactly like you I was self treating and doc wanted me to come off medication, which I did 9 days ago , an, like you , I have knee pain too , along with usual hypo symptoms .
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both freeT4 and freeT3 are right on the bottom of their ranges. Its quite unusual to have both of them so low. These show how much thyroid hormone you've got available. Healthy people would have then close to the middle of the range, and people on medication usually feel best with freeT3 near the top of the range. When on Levothyroxine only that requires freeT4 high in range, too. 
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