Sorry for the woah me post. You all know my background. It took me such a long time to get diagnosed and I felt even then I had to bully my GP into giving me thyroxine.
I went through a trauma 4 years ago, I was attacked by my brother. As a result I had horrific anxiety and agoraphobia. The stress was awful for a few years after as my mother and sisters made my life hell for not forgiving my brother. I cut them out and slowly my anxiety and stress improved. Then last summer I had fatigue, I was tiring really easy and found the summer holidays exhausting, I'd have to rest every afternoon. My GP ran some bloods, my TSH was 5.35 (0.35-5.5) FT4 11 (7-17) B12 212 (150-700 i think) and ferritin 15 (has been low for a decade). My GP said all was fine but I needed to start iron tablets again. I questioned the thyroid and he dismissed it saying it wasn't anywhere near borderline and to stop looking for problems. He said my fatigue was likely ferritin related.
Leading up to the winter I had some kind of breakdown, my son was being terribly bullied in school and he was suicidal and a wreck. He didn't want to go to school, begged me not to leave him there every day, it was hell. It took it's toll on me and I broke down with stress. I was bed ridden with sheer weakness, I couldn't walk I was so dizzy like I was walking on a boat. I had the worst fatigue. I couldn't go and do anything or I'd have huge energy crashes. Life was so hard. I was ill all over the winter. My GP came out to see me and diagnosed stress caused by another trauma seeing my son suffering. He wanted to increase my anti depressants I am still on for what happened 4 years ago but I refused. He came back a few weeks later and ran some blood tests. Nothing really flagged up. He put it all down to stress and anxiety.
In January I went private with Blue Horizon, TSH was 6.5 (02.-4.2) FT4 14.7 (12-22) FT3 5.8 (range I think 3-6.8) Antibodies normal. I sent them to my GP and he said that I was subclinical hypotyroid and we would test every 2 months. By March the TSH was up to 7.5 and Ft4 15.8 (this had risen strangely). May TSH 9.28 and Ft4 15.7 ish. When I called my GP with the new results he still wanted me to wait until the TSH hit 10, I refused and broke down crying that I was so ill I needed my life back as I was a 37 year old mother who needed to be well for her kids. I told him I was having energy crashes, he said it sounded similar to CFS/ME or it could 'just be your mood, how we feel can effect our energy levels' Argh I was frustrated he was trying to say I had depression. I demanded he treated me as he had promised he would this time no matter what, he agreed and we started 25mg of levo.
In July the test was promising as it showed my TSH had come down to 6.8 and FT4 was up to 17 ish. We stayed at 25mg (my choice I was silly, he did offer 50mg) and by August I was ill again with huge energy crashes, weak thighs and feeling so ill I'd end up in bed at least 1 day a week. My GP came out to see me, first time in 8 months and he said it could be viral. I said no it will be that I need my thyroid testing again. He then left me a blood form to check FBC, feritin, b12, blood film, EBV, antinuclear antibodies, hba1c, liver, kinase something.... I still haven't got them done as I had a HUGE panic attack in the nurses room last September during a blood test and I can't bring myself to go back, my GP will come to the house but I have a huge fear of a panic attack infront of him or fainting as I panicked so bad in the nurses room I felt I'd faint, it's developed into a phobia and so far a month on from getting the blood form I've not arranged to get them done. I had my FBC, liver, hba1c etc checked in December and all were fine. I know i have to get it done and will in time. I just have awful anxiety and agoraphobia again since being poorly that I find things hard.~
Anyway, I had bloods done in September and it showed my TSH had gone back up to almost 8 and FT4 had dipped to 16. GP upped meds to 50mg. I am due a test in 10 days time to see if the TSH has come down on the 50mg. I will be having a full test with FT4 and FT3.
I just daily still feel so drained. I wake up daily like I haven't slept, heavy dizzy eyes that ease off around lunchtime. A heavy drained tired body all day. I just generally feel blurgh. Not ill like a flu, no pain but a general lethargy. On top it's brought back my agoraphobia and anxiety, even social anxiety now. A phobia of blood tests incase i faint?? something I never feared before and I had blood tests regular fine, I'd even go alone. I am doing more than I was, I can now clean, I rarely need a day in bed. I probably have 1 or 2 days a month I need a full day of rest. Other than that daily I just feel a chronic lethargy and I often get weakness feeling in my thighs which for me is a warning I need to slow down and rest for the rest of the day. I have heavy dizzy eyes every morning lately which does ease off as the afternoon goes on. A walking on a boat feeling I have daily, eye floaters, cold feet recently and cold has never been a big issue for me throughout this, weight gain since on thyroxine (gained 9lbs since May and I gained nothing prior to this), unable to lose the weight I've gained on thyroxine..... Is this all pretty typical thyroid? I am just so worried when I do have the blood tests done my GP wants doing that he will find something else wrong with me and maybe part of me is terrified of that I feel he is always wanting to poke and prod me. Right now maybe I am being irresponsible as a mother not getting those bloods done, yet I always have my thyroid ones that i do myself at home. It's just a huge phobia and I am exhausted from tests and worry about my health. I am scared because I still feel so fatigued and tired it will be more than just my thyroid being underactive
Having anxiety again and agoraphobia is tough, it returned after the panic in the nurses room last September but then got worse once the dizziness started and weakness over the winter. I have become a bit of a recluse. I have gone back to CBT and having some help to accept my ill health and work on the anxiety it's caused. I dont' have panic attacks but it's a general worry about my health, fears of blood tests, social anxiety and I don't go out alone but with hubby now I do go out to shops, days out etc... I did these throughout my illness the last year but had to pace myself as I kept crashing if I did too much. My friends and family say I seem much better but I still feel so tired and no life in me daily I worry. My GP just blames anxiety, says I might have depression or wants to poke and prod and test for more things. He never seems to blame thyroid for any of it. Hence my anxiety.
I look awful. I am 37, 5ft tall and 123lbs. I have under my chin a double chin kind of look and I am not even a large woman. puffy face around the jawline too. Suddenly have bags under my eyes slightly and some wrinkles I never had before. I am going grey, lost the outer third of my eyebrows pretty much and now the weight gain since on thyroxine. I do not look good lol! So I have lost a lot of confidence in myself and beat myself up daily for how i look and what I weigh. I also worry I am letting my children down being ill and now having some anxiety again even though I hide the anxiety well and force myself to go places to make them happy as I want them to live a happy life. We went on holiday to a caravan park this summer despite my ill health as I want the best for my children.
I did some reading and even bought the Medical Medium book and he said that hypothyroidism is caused by Epstein Barr virus. I googled it and it said it can happen and that a vegan diet rich in fruit and veg can cure it. Is this a load of old tosh? lol!
Sorry this got long and sorry it's a pitiful post but I needed to get out how I am feeling as my head feels it will explode with all my worries.
Lovely advice. Thank you so much. My therapist has actually recommended that book to me. I may treat myself when I've finished my recent book. I'm currently reading a self help book written by Katie Piper which is lovely.
It is a truly awful story and you have had to deal with many things which would cause someone who doesn't have hypothyroidism to begin to show cracks never mind someone coping with undiagnosed hypo.
Your doctor has been misdiagnosing and mistreating you due to his fixation on 'you must reach 10' before he gives you levothyroxine. 50mcg is a starting dose and if you get it increased by 25mcg every six to eight weeks you should begin to improve.
The aim is a TSH of around 1 or lower - not anywhere in range as doctor believes). Anxiety, panic and all the other horrible sensations are also common with hypothyroidism and if you treat them as 'common' and not just due to your past experiences you might be able to put it all behind you.
Ask GP to also test B12, Vit D, iron, ferritin and folate as we can be deficient and they also cause symptoms.
Thyroid hormones are required in the billions of receptor cells in our body as they have to run our whole system. If we have a headache we need one pill for the headache but for hypo we need sufficient T4 (levothyroxine) to convert to T3 (the active hormone which enables everything in our body to work properly, particularly our heart and brain and the brain contains the most receptor cells.).
The following are some hints to get the best our of your levothyroxine or any thyroid hormones:
Levothyroxine should be taken on an empty stomach first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of the hormones.
It can also be taken at bedtime as long as you've last eaten about 3 hours previously.
When you have blood tests for thyroid hormones, they should be the very earliest possible, and fasting although you can drink water. Leave about 24 hours between your last dose of levothyroxine and the test as this allows the TSH to be at its highest and that is mainly what the doctor uses to adjust hormones.
When you feel unpleasant symptoms flooding your body if you try to relax (I know it is difficult) and let it subside as it will do you and by breathing calmly as you need oxygen you will be more in command rather than the sensations.
Slow and gradual increases and I hope your doctor is more sensitive and you've been so unwell he's had to come out to you. Once diagnosed with a mental health problem doctors usually blame that instead of lack of thyroid hormones.
I've always worried as the gp's don't seem to know much and I almost demanded he treated me so I've always worried have I diagnosed myself. Also my ft4 was never that low so I've always worried was something else rising my tsh.
I have had all my irons and vitamins checked and they've increased. Which I included in my post but my gp is testing them again I see on the blood form he wants me to get done. I just need to find the balls to do it. Lol!
I do the blue horizon home tests at 7am when I do them. I take levo the day before at 6am so plenty of time between them.
It has been reported that if people are complaining and GP isn't sure (blood tests don't always confirm hypo) a trial of levo wont harm us. If we took too much we'd know all about it and stop.
Yes, it's a load of old tosh! Not all hypothyroidism is caused by the Epstein Barr virus - although it can trigger Hashi's. You don't have Hashi's. We don't know why you are hypo, do we, so don't start on a diet that can leave you short of essential fat and protein. I think you chose the wrong book! I would recommend Broda Barnes :
No I don't have hashis. The reason I'm worried too is my gp said back in January when my tsh was 6.5 that I didn't have hypothyroidism and unless I had antibodies I couldn't have and to stop looking for problems. He said you have chronic fatigue and we don't know what to do with people like you. Charming man, I switched gp after this to another in the practice. Then this gp disagreed and diagnosed subclinical. My worry has always been that my ft4 was never that low just my tsh climbing. So I have always worried was something else causing my tsh to rise rapidly. My gp was no use. He had no idea.
Said it a thousand times, but I'll say it again : stop listening to your doctor, he's ignorant, and stop obsessing about it all. CFS is a syndrome, not a disease, something has to cause it and, looking at your TSH, it wasn't difficult to guess what!
You are hypo. Lots of people are hypo without having antibodies. You do not have to have antibodies to qualify. In fact, you are still hypo. It doesn't matter how high or how low your FT4 went, that is not the important number, the important number is your FT3.
So, stop worrying, try to relax and put that book in the bin, where it belongs!
Well, then, there's still room for improvement, isn't there. Most people need their FT3 up the top of the range to feel well, when they're on thyroid hormone replacement - and, remember, being on thyroid hormone replacement is not the same as having a healthy, fully working gland. The same rules do not apply.
I read in a post the other day that when FT4 is low(ish) and TSH is rising, TSH is driving the conversion of T4 to T3. Basically you're hypothyroid and your body is converting like mad to try to keep you alive! Sorry I don't have the reference...
I'm sorry to hear you're having such a hard time. I too have just read Medical Medium and have been blown away by it as every illness I've ever had is in there: hypo, chronic fatigue, adrenal fatigue, migraines, digestive problems, depression, menopausal symptoms. All these he says are caused by EBV. I had glandular fever at 18 and was surprised to see the EBV still came up on private tests I had done a few years ago. I thought then it must be responsible for something, but had no idea it could be everything! And then he says shingles (which I've had twice) causes frozen shoulder (I've had two). He also says that many of us (and certainly all on this forum) are suffering from PTSD, which you most certainly are Julie.
So I've had to take notice and, feeling desperate, have just started his 28 day cleanse. What he says about it does make sense, and having just watched The Retreat on BBC2, I'm hopeful it can work. But I'm sooo cold, so don't know yet if I'll be able to stick to it.
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I feel he is always wanting to poke and prod me. Right now maybe I am being irresponsible as a mother not getting those bloods done, yet I always have my thyroid ones that i do myself at home. It's just a huge phobia and I am exhausted from tests and worry about my health. I am scared because I still feel so fatigued and tired it will be more than just my thyroid being underactive 
Still not feeling well following RAI in January
Can I change from levothyroxine if I still don't feel well? 
Feeling a bit better from last heading still feeling rubbish
Latest results came back \"normal\" but I still feel rubbish.
