Hi all. Thanks for everyone's help so far. I think I would be in a panic had I not heard the others are experiencing the same

My thyroid tsh levels were at 9.2 last time tested in August. The other was 12.1 the gp reviewed this by phone and said it looked like it was stabilising ? I didn't understand that as I thought you had to be at the upper levels to be at your best as I was only taking 50mcg staRter dose of levo. I thought that was wrong she preferred to leave it anyway for retesting in 8 weeks . I was upset about that as had hoped to get to.optimum range before Xmas . But no use arguing they know don't they ? I had problem hip slight arthritic and wear tear. And knee. That side. But nothing that would account for my sudden loss of mobility after severe inflammation in head and sinus like problems coughing up mucus 40 times a day and more. Mood changes too when inflammation built up . Pain behind eyes. Drs have been dishing out sinus sprays and anti hist for three years no mention of my thyroid poss causing it. Nothing has helped. I now am virtually unable walk without a stick and hubby arm .I am very down about it as can't qualify for blue badge even as have no diagnosis. . I do my best to get out of can. I bought a mobility scooter last November but hasn't used as hope to keep walking better than having legs get weaker. Not trying to. . Have sold that now . After seeing gp and changing surgeries after 42 years I now had some hope new Dr might be better. I have to add my thyroid was diagnosed as low 20 yrs ago I was perfectly well and questioned that as no symptoms. I was told i needed it as was 0.5 over 10. So they treat you. From day one I was ill. Progressively until ended up unable do anything and like a vegetable. . I decided that was enough came off them I saw specialists at time who got quite angry that I was there as readings said perfect. I almost had to give up.work it was so bad. Couldn't sleep night agitated. Heart racing .I was sure I shouldn't have taken them. .perfect health never seen a specialist in my life. Long story cut short I was worried I may end up heart problem asked see a diff specialist who decided that thyronine was the better option as I obviously didn't suit thyroxine. That ended up making me exactly the same only quicker. The specialist was annoyed as I wanted to come off. But I did and he agreed in end. As had no answers. I then became myself again got my life back. .no pains and was ok. .My walking hasn't been as started getting foot pain and struggling walk prob ten years ago. Just sudden.then had to hold into things to get about . This I put up with had knew x rayed many years back. Hip.has arthritic changes nothing major. Physio I saw 2 years back says out condition need do exercises . Which I was. I then had a gallstones illeus.operation last March emergency operation. They wouldn't do operation on gall bladder before as said my thyroid needed testing underactive. I told them I had been treated twice and both times was very ill . But left me worrying what would happen should I need operation. They said would weigh it up.pros and cons as I may go into a coma. . Not nice situation. Anyway I had to have the op and was fine after until nurse decided give me two weeks anti bios to ensure wound didn't get infected while on holiday. After that the inflammation head mood change flares up last June July. Lost interest in doing my hobbies. Not able walk unaided had to buy a stick . And don't get out much as it's an ordeal. I have now started thyroxine again tho it scared me to try. But seemed ok this time. Increased ones didn't seem any different. Only been on 25 and 50. Now the new Dr I just saw two weeks ago has put the dosage up as said too low. Tho other Dr had left me on 50. I have now severe neck pains left side and back neck. Tooth pain severe I had too and bottom jaw. Dr examines and long as neck not hurting when pressed no tingling arms he's just left me with painkillers. . My back neck is terrible. Pain all night. Coughing up.mucus still. .My left leg knee to hip is throbbing and sore pain shooting up.when walk. Am really worried that I am taking thyroxine and getting problems again am worse now than when started them. .feel.washed out. Going chilled hands and inside. All the things I had when first tried them. I don't want to end up like that again. Readings may be all they have but if can they be relied on. . Is there anything else that can affect your thyroid readings wrongly. As I seem to be someone who can't take any of the medication. . My life has just disappeared since Drs insisted on giving me thyroxine. My two sisters both had thyroid underactive. And were fine. I never expected to be having any problems with it. Just like taking paracetamol my sister used to say yet every day I felt I was poisoning myself. And made I'll. Wish I knew what was going on. No specialists seem to know. Not seen one this time .I just want my life back. Doing all told to .But this can't be right.

[Judithdalston]

I am a bit confused by your opening sentences referring to TSH of 9.2 and 12.2, as you then go onto say thought you had to be at upper levels to be stabilised …are you mixing up TSH with FT4 results? Have a look at Helvella’s recent post about pain research, and the replies to the post…undertreated hypothyroidism often comes with pain around neck/ shoulders ( and thus into face/ jaw/ears) and lower back hips…I have had all of them. To work out what is happening to your thyroid hormone levels you need a full thyroid test of TSH, FT4 and FT3 and probably the TgAB and TPO antibodies, plus, if you know this forum well, your ferritin, b12, folate and B12 levels. Many of us get all these tested by a private lab, as GPs rarely cover much more than TSH. Sometimes it is not the Levothyroxine itself that causes problems but the various ‘fillers’ in the tablets that upsets sufferers.

[AKatieD]

Sorry to hear you are so unwell. As Judith said, to get an informed view on your thyroid, you would need fuller testing than you would probably get at your doctors ( g.p. or endocrinologist).

There are some companies that offer it, not too expensively. It would be worth testing all the things Judith mentions if you can to try, to work out what is going on. List of firms here:

thyroiduk.org/testing/priva...

Most tests are done by you pricking your finger and collecting blood drops in a small tube which is the cheapest. If you think that might be hard (and if you are doing a few tests) it might be worth paying extra to get someone to take your blood as a conventional venous sample (most of the companies offer this at extra cost). Some tests require a venous sample.