Finally a diagnosis of Hypothyroidism

Hello everyone

About 4 months ago I posted looking for some advice re my ongoing symptoms & problems getting my GP to take me seriously...

Today I was diagnosed Hypothyrodism with a TSH reading of 10.55 my TS3/4 not sure which one was 12, but vitamin B & D all within range.

Previous TSH reading September 2015 was 5.8 and was told it was ok.

I'm now absolutley broken, Its affecting everything I do.... I can't get out of bed on a morning, if I have a busy day at work it wipes me out, Im not doing my job properly, I've been a runner for 32 years sub 3 hour marathon and I can't run 1 mile right now & out of breath climing the stairs.

I've been monitoring my heart rate, it's going over 200bpm on a gentle jog, I used to be under 160bpm while fast speed training...

I've now stopped all physical exercise.

I've been prescribed 50mcg of Levothyroxine which is a step in the right direction, But I do have a few concerns...

My gp hasnt answered any of my worries.

First he didn't know why my heart rate is elevated under stress as I'm Hypo...

I have lower back pain which is getting worse & I've done nothing to aggravate this...

I have had a headache for more than 2 weeks which is getting no better

Cramp in my feet regularly...

When I asked for more info he couldn't answer why other than saying 'lots of things are affected when your thyroid isn't working right' but didn't offer any more tests or explanation...

I'm totally aware that I need to give the new drug time to work but a lot of my symptoms are directing me Cortisol issues along with TSH

Has anybody here had problems with pituitary gland and Coritsol levels that could give me some advice... I'm wondering if this needs to be checked also to rule out Pituritary issues..

Also is there anybody here who can advise on a good Endocrinologist in the North East of England?

Thank you

14 Replies

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  • Pamm73, fast heart rate, headache, musculoskeletal pain and cramp are consistent with high TSH and low FT4.

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

    It will take 7-10 days to absorb 50mcg Levothyroxine before it starts working and up to 6-8 weeks to feel the full impact of the dose. In the meantime minimise exercise which depletes T3 levels. Realistically it is likely to be at least 3 months before you are optimally medicated and feel well but you will feel improvement in 3-4 weeks.

    You should have thyroid levels retested 6-8 weeks after starting Levothyroxine as you may require a dose increase. Book an early morning blood draw when TSH is highest, and fast (water only) as TSH drops post-prandially.

    High TSH indicates pituitary gland is functioning well. TSH rises in response to low thyroid hormone. If you had pituitary dysfunction TSH would remain low-normal despite falling T4 and T3.

    Adrenals often improve once thyroid levels are optimal. Your GP can order a serum cortisol test or you can order a private saliva cortisol test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

    Email louise.warvill@thyroiduk.org.uk for a list of member recommended endos.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank u For your reply Clutter

    Yes, I have an appt in 4 weeks for more bloods, advised by GP & i think I'll try and get that cortisol test just for reassurance.

    My worry was driven by the lack of response to questions not just today but in the months leading up to today...

    Reading a lot of posts on here, it seems the vast majority experience similar issues...

    Onwards & upwards hopefully in the next couple of months.. It will be nice to feel normal again

    😊👍🏻

  • Pamm73, I forgot to mention something very important. Levothyroxine dose should be taken after your blood draw or it may skew results.

    These links may inform you a little more than your GP has:

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

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

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

  • Hi Pamm 73

    I emphasise with you wholeheartedly. Two years ago I was diagnosed with hypothyroidism and my TSH was 14.5. Never, ever did I expect to struggle for so long with a doctor who at that time was totally unsupportive. I was training for Comrades in South Africa at the point of diagnosis but like you I couldn't muster the energy to do my job and simple household chores. And I thought maybe I was overtraining. I have travelled overseas to compete in ultra off road events as well as road running here in the UK and running has always been part of my life.

    My advice can only be to read everything you can on the thyroid and related topics - sifting out the dross and most importantly don't let your GP tell you your results are 'normal' if you still feel unwell. It's a steep learning curve and its horses for courses!

    I owe everything to thyroid UK and the Administrators on health unlocked. It takes time to get better and I still have days when I have zero energy. I'm now on a combination of T4 and T3 and it works for me most of the time.

    I have spent quite a sum of money on blood tests and private consultations but at least I got to try a combination therapy. I believe I'm more excepting with my goals and know I'm unrealistic to go for Comrades again. My thyroid runs out of steam far too quickly these days!!!!! I'm hoping to do the Cornish Grand Prix this year and the first race is Sunday. I know I'll be slower but as long as I'm running again I'm happy.

    All I can advise you to do, is become knowledgeable on thyroid topics and to read the posts on health unlocked until you have a solution which suits you.

    I wish you well x

  • Hi Suzy

    I tried to reply earlier but the post has disappeared.

    You sound just like me.

    I did MdS in 2013 and I knew something was wrong prior to the build up as I couldn't run more than 9 mile...

    MdS itself was a painful experience, I developed back ache half way thru day 1 but not muscular, it was deep inside my back.

    If I'd not been running for charity I'd have dropped out.... It drained the life out of me, it was a pain I can't describe. That was the last time I ran...

    I can't see me racing anytime soon and my days of ultra running was short and sweet and I don't think I would put myself at risk now anyway...

    It's great your managing to attempt the Cornish Grand Prix, let me know how you get on 😊👍🏻

    My back pain I have now is concerning me, it's Lower back and kidney area and unfortunately I've developed a chest infection so saw GP today & I've asked for tests to check my Adrenals etc just to be in the safe side... They've agreed which is good so I have those bloods done tomorrow morning.

    Any further tests if i feel I need them I'll go private, I'm not messing around now or I'll struggle to improve because I've been left so long with the original symptoms....

    Good luck @ weekend X

  • Hi pam 73, sorry your feeling like this, I too was diagnosed with hypothyroidism in 2010, it's a very dibilitating condition to have, no one can tell you how you go from someone who's active to this person you don't know. It changed me beyond all recognition, but mine had another symptom I also had a pituitary tumour, so after partial removal, followed by radiotherapy for 5 weeks, it's left me a shade of what I used to be, plus 4 stone heavier. I also have to inject growth hormone as I was deficient too. My life has changed completely. But hey I'm still here 6 years on, keep fighting for the right meds and get a referral to a good endocrinologist consultant, I have a nurse too who I can go to. Good luck

    Lisa 😊

  • Hi Lisa

    Thank you for your reply.

    In also sorry to hear your problems. Trying to get the GP to listen & act is an ongoing battle.

    I just want to ask you about your Pituritary tumour. It's a massive worry for me, I really haven't been well for quite a long time, I'm getting back ache around my lower back and kidney region, I'm concerned about cortisol levels attached to Pituritary issues.

    What symptoms did you get for them to scan your brain and did they run specific blood tests first?

    Thank you x

  • Hi Pam, the symptoms of my pituitary tumour, were severe headache upon waking everyday and my vision was disturbed too, my cortisol levels are not very good at the moment, I had my 2nd insulin tolerance test in October and it showed my cortisol had dropped, so even me having a slight illness can be very bad for me, hence taking more hydrocortisone. When my gp then put me on levothyroxine blood tests just wasn't right, so had an urgent MRI and was diagnosed with the tumour. I have yearly head MRI's on number 10 this year.

    Xx

  • "vitamin B & D all within range." - doctors seem to be happy if people's vitamin levels are at the bottom of the range rather than at a healthy level. It would be worth asking what the actual results (and ranges) are because many people feel better when their vitamin levels are healthy rather than just 'in range'.

    Ferritin is another important one - hypothyroidism seems to deplete a person's ferritin level, leaving you breathless, tired and unable to exercise.

  • Yeah, which comes first on ferritin? So many digestive diseases overlap with hypoT that I think the low nutrients might predate the hypoT, and then of course once the hypo has developed the gut slows down and stomach acid secretion seems to fall and then absorbtion definitely gets worse.

  • I was diagnosed with irritable bowel about 4 years ago, I've gone downhill since then but it's been a rapid deckine in last 6 months which has ground me to a halt...

    Thank u

  • Thanks for your reply

    I'm back at docs today as I've developed a chest infection overnight, Im going to get a copy of my bloods and ask about further bloods, ferritin and cortisol testing.

    If I manage to get a print out of my bloods I'll post them later

    Thank you

  • Thyroid hormones provide energy for our whole metabolism from top of head to toe.

    When they've lowered through our thyroid gland not working efficiently everything is an effort, in particular our heart doesn't have enough T3 to pump efficiently so has to work much harder plus our brain which has the most receptor cells contains the most T3 receptor cells.

    All of the receptor cells in our body must have T3 and T4 (levothyroxine) has to convert to T3. Once on an optimum dose, which has to be done gradually, you will feel much better and many do well on levothyroxine alone.

    It is a serious disease in that once diagnosed we do not pay for any other prescriptions for whatever other problem we may have. It is a life-long medication.

    It takes years to be diagnosed and the UK is the only country in the world to allow patients to suffer until the TSH reaches the 'magic' 10 or above. Other countries are more civilised and prescribe with a TSH around 3+.

    We have to read and learn if we want to get back to some semblance of good health.

    Best wishes

  • Just a speedy reply ! I have read from others here that the 24 hour Cortisol test is more accurate. The NHS only do a morning blood test I believe which does not tell the full story. It's bedtime here in Crete - will write more in the morning :-)

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