Going it alone (with a little help from my friends)

I have decided to write this because I know there is something weird about my perception of time since I have had thyroid problems. I can think that I have felt better for quite a while and then I look at my diary and I see that only a couple of days ago I have written that I felt terrible. I can also have absolutely no recognition of something that happened only last year. Anyway I am hopeful now that I am on my journey of recovery and I thought it would be a good idea to write some of it down before it all gets lost in the mists of time - or the fog of my brain :)

I'm 49 years old, female, work full time. My history: have always been healthy and active until I gave up smoking in May 2011, I moved house in July 2011 and my son went away to uni in September 2011 and then I had a sort of crash. My memory and brain ability took a nose-dive and my anxiety levels increased. I was given anti-depressants (Citalopram 10mg) but I showed no sign of improvement. Went back to the doctor in April 2012 as I felt unable to cope with my job and life. I got diagnosed with hashimoto / under-active thyroid in May 2012 and started on Levothyroxine 50mcg. I had no other symptoms at that time. My blood test results were:

April2012

TSH 6.62 (ref range 0.34-5.60)

Anti TPO 59 (<9)

FT4 6.2 (7.8-17.0)

Nothing apart from my blood test results improved during the 9 months I was on Levothyroxine. Within 2 days of starting it my joints in my hands and toes felt swollen and stiff. They didn't look that different but my fingers felt like those big fat Wall's sausages. I developed lethargy; needed three hours to get ready for work! Spent lots of time staring into space, half my mind saying come on, come on you've got to get moving. In the first few months of taking LevoT my breasts grew by a cup size and were very tender. I became very sensitive to noise and bright light. I became jumpy and nervous and was a complete liability in the car, either slamming my brakes on as a complete over-reaction or blithely sailing accross a pedestrian crossing I hadn't seen. I had strange rashes and hot flushes and cold flushes. I haven't had a period since I started LevoT. I think I was flipping between being over-active and underactive as my body got used to the LevoT.

I felt worse and worse, but my blood results improved:

Jun 2012: TSH 2.25 (0.34-5.60), FT4 12.4 (7.8-17.0)

Sept 2012: TSH 0.66 (0.34-5.60), FT4 11.1 (7.8-17.0)

Nov 2012: TSH 0.43 (0.34-5.60), FT4 11.4 (7.8-17.0).

I had gradually increased the LevT from 50 to 75mcg and it certainly seems to have had the desired affect on my TSH and FT4 levels. However I felt so ill. I got so upset by the blank look on doctor's faces when I went to tell them I still wasn't well. There is one phrase I haven't heard from a doctor ever since I was diagnosed with underactive thyroid and that is "come back and see us if you don't improve" :) One doctor patted me on the knee reassuringly in response to me telling him that my brain won't function and I am unable to do my job. He said to me "if your brain is not working in two weeks time come back and see us and we will give you a new brain". I didn't find that funny, I din't think he would think it was funny if he felt the way I did. Oh I wish doctors could be given a pill to just feel the feeling of thyroid illness for just one day. But they can't and that is why I have I have decided to take my health into my own hands.

Thanks to people on this forum I have found a doctor who I believe understands this illness (Dr P) and is helping me to get well again. I will write more of my journey another day

16 Replies

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  • I can fully understand (as will many others) your story. I couldn't believe how I could feel worse after taking levo but thank God I am now doing fine. Like you I had to go outside the NHS,

    It is a relief to find that you are beginning to recover even if it is a slow journey. What will we do without doctors with the skills of Dr P. There are not that many younger ones following in his footsteps.

  • Hi Shaws, I think Dr p is passing his knowledge on to us and hopefully we can get well enough to pass it on and help others. So glad you are now doing fine :)

  • I have been taking levothyroxine for nine months and had felt better but recently have started to feel like i did in the first place not good so lethargic and sleeping so much just dont feel like the old me .Just had 3rd blood test result was3.1mu/L0.3-5.5.which im told is normal .so why do i feel unwell...What is the difference between levo thyroxine and thyroxine tabs.i have noticed so many changes slight increase in weight but cant move it any more even tho i work out at the gym 3 times a week . Sore gritty eyes sometimes blurred vision is this a sympton and anxiety feel cold most of the time i used to have sweats untill they found i had thyroid.......

  • for you to feel well, your dose of 25mcg is too low. No matter what the doctor thinks. I think all of your above symptoms may well be due to undertreatment. Levothyroxine and thyroxine are the same.

    This is a couple of excerpts re low dose

    Dr. Lowe: Keep in mind that T4 alone is the least effective thyroid hormone preparation, and 50 mcg is an extremely small amount. I seriously doubt that 50 mcg is benefiting you in any way.

    It's possible that the paltry amount of T4 you’re taking, by lowering your TSH level, has reduced your thyroid gland’s release of T4 and T3. The T4 you're taking may be far too little to compensate for your thyroid gland’s reduced thyroid hormone output.

    web.archive.org/web/2010122...

  • Hi there OK today,

    you put that very well and reminded me I'm in that weird place too. Never never land, although I keep several diaries (home, work & for mum) and check back as I can't remember things, important things to do, but my stuff doesn't seem to matter, and I avoid everything.

    Tomorrow I will check my posts and realise that you may have responded and I will appear very ignorant, but will reply as best I can, but I will have slept a little (maybe 3-4 hours).

    I was given ADs too (didn't take them 'tho as I was quite happy in my own little world). Maybe this is just a bad day.

    Meanwhile I'm glad you have found Dr P and am sure things will greatly improve soon! Please let us know how you get on. J :D

  • Thanks for your feedback J and I hope your day was better than you anticipated x

  • Yes thanks OKtoday, funny how things usually turn out better than you expect, sorry I was a bit glum there, not like me really! but you did touch a little nerve there with your lovely post, and please can I join the queue for a new brain? lol.

    Have you seen the video of Dr P? I've not met him (yet) but he seems lovely and he's improved such a lot of Hypo folks' lives I'm sure he will sort it for you sweetie. All the best Jane (keep smiling) :D x

  • I'll look out for the video Jane :D

  • Do you know, after reading your story ( and your journey is almost identical to mine) I cried! I didn't feel emotional as I read through because we read so many similar stories and get used to it, but after reading yours, for some reason I had a really good cry. I think I'm tired after 6 years of feeling so awful, but you keep going because you have to don't you? I have for years been telling my doctors (I change in hope) that I still feel pretty gross and despite constant ailments that baffle them I at best am given anti-depressants or at worse shouted at in anger because I question there actions. You have given me hope that I may also find a sympathetic and knowledgeable doctor out there who can help me too. Good luck to you!

  • Hello Hooper, I'm sorry you've suffered so long and that your GP is so unsympathetic. Sometimes I think they are scared of us and our recurring symptoms, it must be hard for them that they can't find the easy answer. That's on a good day I think that lol - other days I just think they are rude and uncaring. Good luck to you too x

  • I had the same symptoms and suffered just the same! I feel I have lost the 7 years I took levo and it wasn't helping. I found an endo who prescribes NDT but he is not allowed to prescribe for new patients. Appalling but true.

    I "lost" hours during the time I took levo and feel strongly it should be banned. No matter how many doctors say its great for most people I don't believe its right, seems that they think if they keep repeating the mantra it will become true!

  • I wonder too Glynisrose how many of those people that "do well on it" just give up and stop going back to their doctor. Or the doctors just never put two and two together when people keep going back with various symptoms. My doctor said he had never heard of anyone on LevoT with joint problems. I know from other people's posts that I'm not alone in this. Thank you for sharing your experience by the way, I'm sorry about the time you were on LevoT and it wasn't working for you, but at least you can pass that information on to other people who can hopefully start looking for help sooner. I hope you do well on NDT x

  • OKToday, let us know if you turn out to be one who needs T3 only. You are probably far from trying that I've been reading about this as I know that several bloggers have mentioned that this is what improved their condition. Even those who are on Armour can't always say they are back to normal healthwise. It seems that ANY amount of T4 may not be the answer.

  • Hi thanks for your feedback Heloise. I think at the moment I'm a long way from trying T3 only. I do hope that a little bit of natural thyroid might be what I need, but thank goodness for the info on here :) to help us with our individual journeys x

  • I am so sorry to hear that you still feel so unwell after taking levothyroxine. At the age of 49 has your doctor not even suspected the menopause, especially seeing as your periods have stopped! I honestly don't think your main problems are due to thyroid at all, although it won't help because it controls your hormones too. You need to get back to your doctor and ask him to treat you for menopause. x

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