Misdiagnosed

Hello everyone

This is my first ever post concerning my health, and I've come here out of desperation, I really hope someone could help!

I am 42 years old now. A year and a half ago I started taking Levothyroxine (25mcg) after a blood test revealed that I suffered from Hypothyroidism. Then about a year ago I started to develop insomnia, which gradually worsened to the point where I was waking up at 3am, and that was the start of my day, everyday, for months.

I went to the doctor again (a different one by this stage), who prescribed zopiclone; this had no effect whatsoever on my insomnia, and I still woke up every day at 3am, but now with a foggy head.

Then I started to develop diarrhea which also worsened. I had a stool test, which was clear. I went back to my doctor, who told me that I should not need to take Levothyroxine, as the initial diagnosis showed I was only *slightly* Hypo, so I stopped taking it. He also told me to stop the zopiclone, which I did.

Then about 1 week after this, and almost overnight, my sleep and diarrhea were both fixed at the same time- I had the best nights' sleep that I'd had in a year every night for the next 3 weeks.. Then they both returned again with a vengeance, and I am back to starting my day at 3am again.

I am really desperate with this. I believe that I am suffering from *Hyper*Thyroidism, all the symptoms point to this.

The doctor seems to treat me as if I'm an idiot, and will not listen.

Can anybody help me with this? Has anyone else had a similar experience?

Thanks for your time,

Jon

[Hidden]

You need to get back on thyroid medication...with or without gp. Also, you may have coeliac. Bet they never tested you for it? you need optimal levels of several key vitamins for your thyroid meds to work- d3, iron, b12. Go gluten free and see if the diarrhoea stops.

[Hidden in reply to Hidden]

Thanks for your reply.

I was told that the initial blood test (that started all this) indicated that I was only very slightly under with thyroxine levels, which is why the doctor said I should stop. Why do you say I should go back on it? I will try gluten free.

Thanks

[Clutter]

Jonslater, welcome to the forum.

It's very difficult to advise without having your thyroid results with the lab ref ranges (the figures in brackets after your results). Ask your GP receptionist or Practice Manager for printouts or make an appointment to view your results online at the surgery and make notes.

Levothyroxine can cause diarrhoea but it's unlikely to be the Levothyroxine so long after you were prescribed it and on such a low dose. That fact that it stopped for a while when you stopped taking Levothyroxine may be due to your own thyroid upping production. Now it has resumed suggests to me that low/undermedicated thyroid may be causing it and disrupting your sleep. 25mcg is a very small dose and is normally increased after a few weeks. Sometimes a small dose can inhibit your own thyroid production leaving you worse off than on none. Constipation and weight gain are typically hypothyroid symptoms but some of us go the other way experiencing diarrhoea and weight loss.

Is there another GP at the practice you can see for a second opinion and follow up thyroid blood tests? It would be good to have thyroid peroxidase and thyroglobulin antibodies tested to see whether you have autoimmune thyroid disease (Hashimoto's) as this can make you feel hyper and hypo in succession and sometimes at the same time.

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/about_...

You can order a private thyroid panel from Blue Horizon or Genova if you'd prefer not to see your GP about it. thyroiduk.org.uk/tuk/testin...

[Hidden in reply to Clutter]

Thanks for your reply Clutter, that is really informative and is clearly excellent advice.

I should have also wrote that whilst I was on 25mcg levothyroxine, I had my thyroxine levels tested and they were 'normal', although of course you are right in that i need more information than this.

I am already detecting a common thread here of some people having experienced misdiagnosis, or the wrong treatment having been administered in some cases. I want to get the tests i need now, so that my condition can be treated properly. Can I just double check with you which tests I will need:

Thyroid Stimulating Hormone (TSH)

Free T4 (FT4) and Free T3 (FT3)

Thyroid Peroxidase (TPO)

Thyroglobulin (TgAb)

Are there any that i have not listed that could help me?

Thanks a lot for your advice.

Jon

[Clutter in reply to Hidden]

Jon, they're the thyroid tests you need. If you're having them done on the NHS it's unlikely they'll test FT3 unless your TSH is suppressed <0.03, in which case it really is worthwhile to have it done privately.

'Normal' is a very broad range which is why we advise people to get a printout of their results with the lab ref ranges. Being at the top or the bottom of the range are both 'normal' and some GPs also consider results just above or below range to be 'normal' or of little significance.

The most common problem is undermedication or no diagnosis because bloods are 'normal'. Doctors have stopped taking clinical symptoms into consideration when test are 'normal' unfortunately.

Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.

[shaws]

It's a sorry state of affairs but sometimes some doctors appear to know little about how to treat or diagnose thyroid gland dysfunctions but only go by the TSH result and ignore patients clinical symptoms which was how we were diagnosed before the blood tests were introduced.

Clutter has given good advice and when you post your results with the ranges on a new question, members will comment.

Best wishes

[Hidden in reply to shaws]

Thanks for your reply shaws.

It has made a difference this evening contacting this group, and apart from anything else, my recent experience has taught me that there doesn't always seem to be simple solution to this problem. But there seems to be a lot of people here with experience.

I wouldn't mind if the doctor didn't know, it's the him getting it wrong and then treating me like an idiot that i found a bit difficult to cope with..

Kind regards,

Jon

[Stourie in reply to Hidden]

If you get bloods repeated get them done as early in the day as possible as that is when your tsh is at its highest. It drops as the day goes on. If you try gluten free and it doesn't work make sure to eat quite a lot of bread and high gluten foods for 3 weeks before being tested for celiac.

[rosetrees]

Hi jon. As others above have said, and you've worked out, make sure a comprehensive set of thyroid tests are done and you get into the habit of asking for print outs of all results, with ranges.

Your insomnia makes me wonder if perhaps you have adrenal problems as well as thyroid. There's a good questionnaire here adrenalfatigue.org/take-the...

If that sounds like you, order the saliva cortisol test from Genova UK thyroiduk.org.uk/tuk/testin...

[Angel_of_the_North]

I have hypo symptoms, but also diarrhea. And I went through a long period of waking between 2 and 4 am. Those symptoms weren't caused by being hyper (although I too considered it initially) but by poor adrenal function.

[Hidden in reply to Angel_of_the_North]

hI aNGEL - how did you sort out the night time waking and poor adrenals?

[Angel_of_the_North in reply to Hidden]

Time, meditation and adrenal cortex, but still not quite right.

[Hidden in reply to Angel_of_the_North]

don't understand what you mean by adrenal cortex. I know what adrenals are. Did you take something to help your adrenal cortex? thanks

[Angel_of_the_North in reply to Hidden]

Adrenal cortex supplement

[greygoose]

Hi Jon,

Maybe this could help with the sleep :

rejuvinstitute.com/why-do-i...

Hugs, Grey

[Hidden]

Hi everyone,

Thanks so much for all your suggestions; here are some really useful practical solutions, and as much as anything else it's just really supportive.

I've managed to get an appointment on Friday this week with a doctor i saw some time ago, who seemed at least willing to listen. I am going to get her to arrange a complete thyroid panel for me- or else i'll get it done privately. Either way, i cannot keep going on like this. I had stool sample results back this week, all 'normal' apparently; if you ask me, they were anything but normal, but i think they mean there's no infection, etc. I'm not really surprised by this.

I have large areas of my day that I can't remember, I can't concentrate and I've had some chest pains this week, I'm constantly on edge, and i feel panic sometimes. But most of all insomnia is literally driving me into insanity. I have also had a nagging dull ache just over my liver, which could be connected with adrenal function mentioned earlier.

Thank you all again for your help, I will post my results when I get them back.

Jon

[lucindajethol]

Go back to the GP for a new set of tests. Having read lots of postings on this Forum it is possible to swing from Hypo to Hyper, just need to get on top of things and sort it out with the GP.