I am a middle aged female on the highest dose of synthroid and my TSH is finally down to 36. I also have fibromyalgia. I am exhausted and in chronic pain. My husband was paralyzed last summer from the waist down. Caring for him is trying on my body. I now find myself crying constantly, suffering from major anxiety and feeling worthless. They just found a lesion they fear is cancer. I am not sure how much more I can take. I tried to talk to a few, but they can’t understand the pain or the fatigue and keep saying it will be alright and that I am an amazingly strong woman. I don’t want to be strong anymore. I have no fight left. I want to scream and cry and run away or just let go and slip under. The pressure is great. I don’t know what to do. I just want to go to sleep and not wake up.
Trying to stay afloat : I am a middle aged female... - Thyroid UK
Trying to stay afloat
TSH is 36 and synthroid is 300ug.
Having such a high TSH whilst on a fairly high dose of levothyroxine (Synthroid) suggests some possibilities:
Your TSH test is inaccurate. It is well-known that TSH-antibodies and heterophile antibodies can interfere with TSH (and other) tests. Also, supplements like biotin.
Your pituitary in inappropriately producing too much TSH.
You are not properly absorbing the levothyroxine.
Without also having Free T4 and, hopefully, Free T3 results, it can be difficult to identify what is happening. However, interference with TSH test can sometimes be identified by having the test processed at a different lab which uses a different technology.
Just for reference, I take the equivalent of 630mcg of Levo, and am still increasing to get better. We are both on high doses, but everyone is different, and some of us are a bit more complicated and need more.
A TSH of 36 means there is something wrong. A healthy person would have a TSH of around. 8-1.8, and anything over about 2.5 means a person is ill. Once medicated most of us need a TSH well below 1.
TSH is thyroid stimulating hormone, produced by the pituitary gland, in response to other brain signals, calling on our thyroids to produce more hormone.
As others have said, there can be a few explanations for such a high TSH, and this needs to be investigated. Once you get on the treatment you need, your symptoms will feel much better, and it will be easier to cope overall.
Unfortunately doctors can be terrible at helping us, and know very little about thyroid. This forum can help you figure out what you need to be asking for, or how to ask for tests yourself.
Well, it sounds as if you need to keep coming to this page in order to find out more about treatment and getting help. So keep talking to us and do provide your T3 and T4 results. The TSH you give is sky high. I would not throw the towel in just yet, because you probably can find out here how to get on top of things. I realise that is easy to say, and I can see that you have terrible symptoms, but knowledge is an alternative to despair. My partner was hit by a car about ten years ago and has never been the same. He can walk, but he is not the same person. I don't have to lift him or anything, but I can identify with feelings of trying to put the past person and the present person together in your head and missing what was. Best.
You are not worthless. You are just being massively let down by those who should be caring for you. But so have the majority of us and you have found the right place. Keep talking. Keep reading. Keep asking questions. Keep learning. Keep fighting. Keep challenging. Change health care providers and change and change again until you find someone who knows what they're talking about and helps you. A lot, if not all, of your symptoms could be due to a TSH of 36. The old you is still in there, you just need some help to find her again. Unfortunately as many of us have found that might mean going it alone without your gp, but with the massive support of the knowledgeable in this group. Just be brave for a little longer 
Try to love yourself more. Get a full thyroid panel done and post the results on here. I saw a functional practitioner she said one auto immune disease often leads to another . You probably have Hashimoto’s Thyroiditis, and now fibromyalgia. This was her prescription :-
*Get regular 8 hours sleep, two hours before midnight
*Drink lots of filtered water.
*Cut out chemicals in your personal care and environment.
*Supplements magnesium , vit c, vit B 12, vit D,
*Add magnesium crystals to your bath or foot bath
*Take saunas when possible to detox .
*Most important follow an exclusion diet for a fortnight, then drip new foods in to discover which foods you are reacting to . Most people with Hashimoto’s react badly to wheat and dairy.
The book , The auto immune solution by Amy Myers . I found it a great help.
Please don’t be overwhelmed by all this, perhaps you could try one thing a week. It worked for me, I hope that it will help you at a time when you need your health most.
Try not to think its cancer until you know for sure. I spent the last two months with the doctor thinking it was and he even called me to tell me that. I still didn't worry as worry can and does exhaust us. It turns out I didn't have cancer after all. Please try and take some time out for yourself. Even if it's sitting in the garden reading a good book with a nice cup of tea. I hope life improves for you.
You sound like you’ve had the worst luck in the world and I’m not surprised you feel stress, anxious and depressed. Firstly, for the pain of fibro please try Celebrex - if you haven’t already - it’s almost cured my chronic pain so I can even exercise! This I think will be a massive help to start with. You might need to spend a little time on antidepressants to help pick you up a little. Assuming you and your partner are not working, you should probably have a social worker or similar to help you access support with running the home etc. You can also refer yourself for counselling which could be really helpful so have at least one outlet. A space to be yourself and not worry about others. Keep on the formum and keep talking. People here understand and are incredibly knowledgable and supportive. I would tackle that pain first and go from there. Keep in touch. X
I believe you can be referred for respite at a chronic pain clinic residential stay in Bath Royal Hospital, Liverpool, or Guys and St Thomas... if any of these are reasonably close.. The council should be willing to cover for your husband's care needs while you get some help for yourself. In the meantime I hope you get more meaningful answers from your PCP other than just TSH results..
I can literally feel your pain because many of us have been there, so there is hope if you can summon just a little bit more energy to follow the advice of some very knowledgably people on this site.
First step as helvella and really fed up have said:
You need to ask your GP surgery to provide you with you blood results for TSH, free T4 and free T3 along with the ranges (ie the 'normal reading should be between x and y). If the surgery tell you that you've only ever had a TSH result then you must politely insist that the GP specifically requests freeT4 and free T3 as well. As you are on a high dose of synthyroid you should ask your GP to refer you to an endocrinologist.
When you have the blood results outlined above, create a new post so that you can be further advised on your next step.
As I have said, there are some very knowledgably people to help you; take it one step at a time and you will learn a lot about your thyroid and fibro conditions.
One of the things I would like you to do is tell us a name to call you by because 'noname' makes me think you don't value your yourself, I can assure you that we value you, particularly with the way you are coping with so much pressure.
Have you thought about taking NDT or T3 for your symptoms? It wn't help your husband, but it might help you cope better.
I was diagnosed with FM 10 years ago when I felt dreadful, but have been self treating with thyroid hormones for the past 4 years, which helps immensely. I still have bad days, weeks & months as I suffer with other chronic joint & muscle issues, but not that constant feeling that I have flu. I'm assuming you're not in the UK, but perhaps where you live has pain management & care support groups &/or courses available, which may help reduce your stress.
Stay on here you will learn a lot. If it’ wasn’t for this site and my constant perseverance with my doctor I’d still be sick. I often quote to him what I’ve learned and I know I’m right so he treats me accordingly. Sorry you feel so I’ll but please don’t give up. Hugs
I am so sorry to hear you are having so many health issues. I am also so sorry to hear about your husband. You have every right to cry and scream and some times that alone can give a little relief even if it's only for a few moments! I know from personal experience that a thyroid that is out of wack can add greatly to depression. Everyone on here who mentioned that you need your Dr. to give you your test results is correct. The contributors to this site need to see them to help you know how to proceed. I don't want to sound trivial, but when do you take you thyroid meds? So many things...IE..food, drinks, other meds can interfere with Synthroid absorption. Please stay in touch with this group. Everyone on here want to help!
As well as what others on here have suggested, can you get any help with caring for your husband or any equipment so your husband can become more independent, assuming he isn't at the moment?
Karen
Personally, I would demand to be referred to an endocrinologist to have not just thyroid, but also pituitary, issues addressed. Your TSH could be high because there is a growth on your pituitary gland.
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