First endo appointment Monday

I was recently told I'm hypothyroid with elevated Anti-TPO antibodies. I had my FT3 levels checked a couple of months ago but this was found to be in range. I am currently receiving Levothyroxine, Vitamin D and Spatone for iron supplementation.

I've heard lots of good things about taking T3 as well as the T4, but is it going to help me since my FT3 is in range? Also will my endo prescribe it if my GP will refuse to? I see my endo/one of his consultants on Monday for my first appointment.

Also what will they do at my first appointment? Will they take bloods, my weight/height or anything else? I had my bloods done Wednesday and haven't heard about them, so would that mean that the endo now has these and not my GP?

I had my bloods done recently so I don't know if there would be much point if they did them again! And the veins in my arms have hardened due to so many needles going in them so they'll have some trouble getting any blood out of them!

Thanks

Jo xxx

22 Replies

oldestnewest
  • What was your t3 level and the range? I'm in similar situation to you I've read that it's good to have it towards top of range .

  • Hi Sezzy, my T3 level was 5.5. Normal range was 3.1-6.8.

    Thanks

    Jo xxx

  • Are you still unwell is that why you want some t3? X

  • Yes, I don't feel good at all. Is it ok if I give you my symptoms just to give you an idea? I can also give out my bloods from December. January's aren't yet available but I presume the endo has these.

    Thanks

    Jo xxx

  • Course, you had any iron,b12,folate,vit d ?

    I learnt alot from the dr peate book do you have it ? X

  • Aww, thanks Sezzy.

    Symptoms are:

    * Fatigue/tiredness

    * Taking lots of little naps/sleeps during the day. This is mostly early evening

    * Difficulty swallowing (this has gotten worse)

    * Uncomfortable feeling in throat

    * Eyes feeling heavy

    * Pains in hip, ankle, knee, elbow and back of neck

    * Dry skin

    * Low body temperature (putting a hot water bottle on my core area/tummy area has risen it dramatically from 36.8 to 37.4!) I have low body temperature despite not feeling cold.

    * Headaches

    * Chest pain

    * Pain in ribs

    * Early ovulation

    * Early periods

    * Short periods

    * Heavy periods

    * Short cycles (every 21-22 days)

    I've had bloods done for iron, B12, Vitamin D and folate. They were done in December however - I've not had them done since.

    Results (with ref ranges) are:

    Iron - 22 (30-400) - has gone up from 15 since taking Spatone. Although this has jumped up some people have commented to me that I look worse than before. No idea why. Could it be the hypothyroidism is getting worse if the iron has gone up?

    Vitamin B12 - 363 (180-900). I have ordered Jarrow's B12 Lozenges for this as some people have said this is low. GP did not start me on any meds for this as it was within range.

    Vitamin D - 43.6 (>75). GP did start me on Vitamin D3 Fultium 800IU but I was told by some people this was not enough. I bought a Better You D-Lux Spray at 3000IU.

    Folate - 4.1 (4.6-18.7). Again, GP did not start me on any meds for this as she thinks it will increase if I add more folate to my diet.

    TSH - 4.6 (0.27-4.2)

    FT4 - 15.6 (12-22)

    Anti-TPO - 41,000 (<34)

    I haven't got the book by Dr Peate book - in fact I know very little about it up to now! Is that easy to get hold of? I'm trying to save my pennies at present since I'm jobseeking!! ;)

    Thanks

    Jo xxx

  • amazon.co.uk/gp/aw/d/190514...

    Thats the book but you could prob find it second hand on ebay.... possibly.

    If thats your recent blood on thyroid tsh 4.6 t4 15 and t3 5.5 it doesnt look like a conversion problem you could do with an increase in levothyroxine! Are you on levo ?

  • Thanks for the link.

    Yes I'm on levothyroxine at 150mcg. I was hoping the endo might get me to increase it. Would this be the case?

    Thanks

    Jo xxx

  • Possibly there is a quote in a book from dr toft its a british medical book about tsh suppression ill find you a link tommorrow . Night x

  • Thanks, you've been ever so helpful. Night :) xxx

  • Jo, My TSH, FT4 and FT3 are tested prior to every endo appt. via the hospital phlebotomy dept. Reverse T3 isnt tested (they totally buy into T4 monotherapy is the only required treatment). Weight and height are noted at every consultation. Despite the consult taking place in the Diabetes unit, urine hasnt been checked since Sept 2012. Thyroglobulin is tested every six months to check for cancer recurrence.

    Other bloods are requested periodically ie calcium, Full Blood Count (checks for infection etc.) and coeliac screen based on symptoms discussed during the consult. Consultant said FBC was normal in August and therefore I couldn't be anaemic and VitD, B12, folate and ferritin would be fine. In fact, ferritin was above range, my VitD was severely deficient <10 and folate deficient and these weren'tpicked up until my GP tested in November at my request.

    One endo has referred me for ECGs and chest xrays, diagnosed COPD and fibro and recommended my GP refers me for lung function tests (spirometry) and the other suggested a gastroenterology referral re weight loss (hasn't happened).

    I believe all of these symptoms relate to levothyroxine intolerance. The endos do not. I'm now seen every six months.

    I emailed both consultant endos in November to ask for advice and I'm still awaiting replies.

    T3 was only prescribed post completion surgery pre RAI ablatement and two weeks prior to RAI whole body scan. My T3 was 3.1, below range, in August and I was told to continue with 100mcg T4 daily.

  • Thanks Clutter.

    Bloods are tested prior to every endo appointment? Would this apply to me since my bloods were done Wednesday just gone? They would probably still do it within not even a week?

    My endo won't be happy with my weight as I fluctuate between 7 stone 9 and 7 stone 12. I'm only just within the healthy BMI range and my GP has said she doesn't want me to lose any more weight.

    Calcium I've never been tested for, so it would be interesting as to the result for that. Full bloods haven't been done since May last year. Coeliac screen done December.

    I'd like to be referred for ECGs and chest X rays since I've been getting chest pains. Spirometry would be interesting as I've not had any of this done to me since the hypo diagnosis.

    Jo xxx

  • I imagine the bloods you had drawn Wed are for your endo appt.

    I think you've misunderstood my post, a bit.

    I didn't say your endo will test any of the things I mentioned in my post above. I was relating my experience at my consults. The tests mentioned are some of the tests I've had and are presumably pertinent to my illness and ongoing symptoms, and not Hashimoto's and hypothyroidism in general.

    My BMI was 16 and after coeliac screen was returned normal, weight hasn't been discussed. I think being overweight is of more concern to most doctors.

    Unless you experience difficulty breathing you don't need spirometry :)

  • Hi Clutter, I knew the things mentioned were about your situation. Just wanted to answer with my own situation to compare with yours when it comes to having these things done if that makes sense.

    With the blood test, I simply moved it to an earlier date. It was meant to be booked for the 21st January but I moved it earlier as I started to feel very poorly. So I guess the endo has them anyway seeing as I see them Monday?

    Would they test for calcium and scan the thyroid via ultrasound? Or is it worth asking this at the following consultation?

    Thanks

    Jo xxx

  • Endo should be able to get your results from your GP surgery via email if they've not been requested/forwarded.

    I don't know if calcium is tested as a matter of course. I think mine may have been tested because I had tingling and numbness in my hand and fingers.

    If endo manually examines your throat and neck and finds swelling or nodules s/he'll probably order an ultrasound scan.

    Don't forget to bullet point your symptoms and questions before your consultation.

  • Ok, thanks. I'll just write all my symptoms - and include those that aren't hypothyroid as well. I'm spending most of tomorrow trying to include questions - just so I'm ready.

    Jo xxx

  • Jo,

    Pre surgery, the surgeon doubted a number of my symptoms were thyroid related. Endos also said this post surgery.

    I hadn't hit the internet and forums then. When I did, my symptoms were entirely consistant with spiralling Hashi's, going rapidly from hypo to hyper and back.

    For some inexplicable reason medical professionals don't seem to acknowledge the myriad of symptoms/side effects posters on thyroid fora experience & know are thyroid related.

    You have a diagnosis of Hashimoto's because of your elevated TPoAb. You don't need to 'prove' your illness. All that needs to happen is the endo determines the best treatment to manage your illness via adjusting medication or surgery, whatever is most appropriate.

  • Ok Clutter.

    I really hope I don't go down the route of surgery. Will they be able to find out any adrenal issues?

    Thanks

    Jo xxx

  • Surgery is always a last option and only after other options have been explored and rejected. In my case, surgery removed compression on my windpipe & made breathing easier. Surgery for me was a doddle. Adapting to T4 has been the problem.

    My endos have never mentioned adrenals. I've no idea if any of the blood tests checked or ruled out adrenal issues.

  • My doctor told me they were more concerned with underweight patients than overweight.. when I said I was concerned about my weight gain

  • Hi Lola, thanks for your reply.

    Are you Hashimoto's yourself?

    Jo xxx

  • Lola,

    I've been advised to eat small frequent meals & endo advised GP to refer me to a gastroenterologist. They haven't, & I haven't chased it because I was sick of tests and hospitals. That's the level of concern re my weight loss.

    When I stopped taking Levo I gained 2½kg in 4 weeks. Dropped off again now I'm back on T4.

    If I was overweight I have no doubt I would be told to eat less and exercise more even though there is evidence that T4 can cause weight gain despite restricted diet and increased exercise.

    Its a bad joke, really. Want to gain weight? T4 won't let me. Want to lose weight? T4 won't let you.

You may also like...