Endo Referral

Finally received doc's letter today referring me (only took them 5 days to post the damn letter after typing it grrrrrrrrrrrrrrrr). Am booked in for about 4 wks time at my local hospital; could have booked at another one and got in earlier but hate that hospital lol. Was informed to get bloods done about 2wks before my appointment and also a wee wee sample. Was informed that I may well be there for some time as well and to take a snack lol.

Can anyone tell me what to expect with my first visit? Have never seen one before and I obviously want to go armed with as much info as I can and that he/she might need?

Have purchased another Blue Horizon test kit just in case my doc tomorrow won't put the right tests down to be done. Have also been reading up on adrenal fatigue and I do have many of the symptoms and was going to also purchase a saliva test kit. Is that something my Endo will auto check me on or should I go ahead and buy one anyway?

Am keeping a diary at the moment, noting down when everything reared it's ugly head again, symptoms, blood results, what I am eating and how I feel each day. Wondering if I should also note down my temperature. Just thinking of covering all angles I suppose so Endo has as much info as possible

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  • Jefner, If you've been referred to the endo for thyroid s/he won't automatically check adrenal function, and when/if s/he does it will be via serum cortisol as NHS doesn't recognise saliva tests. Bullet point your most pressing symptoms to nudge you to discuss and it may be helpful to present the endo with a list of medication, supplements and doses. Don't expect the endo to agree that supplements you are taking are beneficial.

    Most endos are primarily diabetes specialists and diagnose thyroid by blood tests. Most probably aren't trained to be aware of basal temperature testing. My endo isn't interested in nutrition or supplements with the exceptions of coeliac testing for suspected gluten-intolerance which my GP was asked to organise, and vitD. Some endos will recommend Hashi patients adopt gluten-free diet but others think only coeliac patients should eschew gluten.

    My endo consultations are held in the diabetes unit so I duly provided the urine sample requested but I've no idea whether it was analysed as results were never mentioned. I've not provided samples in the 3 years subsequently.

    My thyroid blood test is done 2-4 weeks prior to the consultation. I'm weighed outside the clinic and height measured. Throat and neck are examined for lumps but that may just be because they're checking for a recurrence of thyCa. When thyroid levels were high my hands were examined for tremors and moisture indicating over medication. Symptoms and blood levels are discussed and dose adjusted if required. I always ask for results. If you don't know what the lab range is ask, the first time anyway.

    When I had breathing difficulties, violent palpitations and racing heart, endo would use a stethoscope (remember them?) and arranged full blood count but not vits/mins, chest X-Rays, ECGs and got my GP to arrange lung function tests. Because my TSH is suppressed and I had vitD deficiency endo arranged a DEXA-scan and now monitors calcium and vitD as I have mild osteopeniia.

    In the early days when I was very unwell consultations ran to 30-40 minutes but since I've been stable and well I'm in and out in under 10 minutes. I'm told when he next wants to see me (annually now) and given a blood order form to test before the next appointment. I'm copied on the clinic review letter sent to my GP. You can request this if it isn't automatically done.

  • HI Clutter, I have been feeling much better the last week or so until today when all my anxiety, palps and weakness has come back. I am back at my docs again in the morning for more results. I don't know what has caused this sudden onset but am feeling awful again. Have been GF for a couple of weeks now and getting on well with it, although I had fish in breadcrumbs last night although I just ate the fish, but obviously it will have been contaminated anyway. Just wondering if that has upset me today; not that I have ever had any problems with food sensitives as I told you some time ago. Apart from what I ate there doesn't appear to be any reason for me to feel like this again.....omggggggggg when will it end, I am so close to giving up :(

    From what you have said then I shouldn't hold my breath that I will get the help I need :(

  • Jefner, It will very much depend on the experience and knowledge of the endo you see as to how much help you get. Neither of the consultants I saw was helpful. They weren't horrible but didn't hear what I said or dismissed what I said. Nothing was to do with thyroid or Levothyroxine, except everything was due to low FT3 and Levothyroxine as I later proved.

    It might have been gluten in the breadcrumbs which has upset you. Keep up the g-f and food diary and you'll see whether there is a pattern next time you fall off the wagon. Sensitivity to gluten isn't always expressed in digestive issues. Humanbean said her foul temper improved immeasurably when she went g-f and others found brain fog improved.

  • Didn't eat the breadcrumbs but obviously the fish would have been contaminated I suppose. Wow I didn't know that about gluten, I thought it was just a gut issue. So much to learn with a far from straight forward disease. Heard from anyone as regards to anxiety/palps when they had gluten on a GF diet?

    Going back to my Ferritin levels being 56 both on NHS test and Blue Horizon, I am wondering if they have dropped even further in the last couple of weeks since I went GF? I don't eat red meat or eggs. Have been having pork, chicken and fish. Wondering if that might explain the anxiety/palps/fatigue?

    How did you prove what you needed to, to your Endo?

    Thank you honey for your comforting words, always appreciate your help. It's difficult living alone as your mind wanders, it's difficult to distract myself as well and keep the anxiety under control and also the thoughts. Just so wish I had a thyroid buddy closeby to lean on.

  • Jennie, Humanbean also found her ferritin rose after going g-f so although she didn't appear to have gut issues with gluten it was affecting absorption of nutrients. Pork, chicken and fish plus vegetables should be fine for iron. Are you supplementing iron too?

    Not heard anyone report a lessening of anxiety and palpitations because ferritin improved but it's not uncommon to have palpitations when iron is low.

    I'm not sure I proved anything to the endo other than my health improved on T4+T3 which he noticed himself. I'd improved off T4 for 4 weeks in 2012 then became unwell when I resumed it. In 2013 I came off T4 for 8 weeks without much improvement. Stopped T3 too for 4 weeks and by the 2nd week off meds symptoms started improving. By the end of the 3rd week all symptoms had cleared. Within hours of resuming T4 I had palpitations, breathlessness and tremors. Next day I added T3 which calmed the adverse effects. So really, I only proved or confirmed to myself what I already knew.

  • No, not supplementing iron hon, was going to ask for some tomorrow morning from doc but don't want a high dose. Have been round the chemists and the smallest dose I could find was 200. Iron/Ferritin = same thing?

    Blimey that's a lot of experimentation. So with being on and off T4 and T3, what are you settled on now

  • Jefner, 200mg isn't a high dose but you can buy lower dose, Spatone, Solgar Gentle Iron or Floradix on Amazon. Ferritin is stored iron

    I've been on the same dose T4+T3 since July. Not seeing endo until Spring so not likely to be any changes soon.

  • thanks hon will look into that. How many years have you been fighting against the system to get yourself well?

    I remember, from my previous bloods, you suggested that I might try some T3. Wondering if it's worth mentioning to my Endo?

  • Jefner, I was unwell for about a year before I saw my GP, and during 9 months while I waited for hemilobectomy and completion thyroidectomy. Improved for 3 months on T3, then declined for 15 months on T4. Another 6 months getting T4+T3 dose right. I've felt well for the past 2 years.

    If your FT3 is low you might benefit from adding some T3. Higher FT3 might help reduce anxiety but it can exacerbate it in some people. Mention it to the endo because some CCGs won't let GPs prescribe it without an endo recommendation.

  • I shall mention the T3 to my Endo thanks. I suppose it's trial and error as you experienced but I don't feel I can take any more bad symptoms, been trying so hard to get shot of the ones I have :( It's been a pretty miserable 53yrs to be honest, just one thing after another with no let up :(

    Think I am gonna get a private saliva cortisol test done, think that needs to checked and crossed off the list?

    Why did you wait so long before you saw your GP? Did you have thyroid problems at that time anyway or were you newly diagnosed?

    How long have you been on this site?

  • Jefner, for a long time I thought I was having bipolar episodes. By the time I accepted it wasn't bipolar and it was physical I felt too damn ill to schlep to the surgery. See-sawed between ok and awful for a while and finally made a GP appointment when a lump appeared overnight which I thought might be a goitre due to Graves. Wrong again :-D It was Hashi's.

    I joined the forum Sept 2013.

  • was the lump that prominent then?

    It is worth my getting a cortisol saliva test - more ammunition for Endo is anything shows up and another one to cross off the list if it doesn't :)

  • Chemist is cheaper than prescription for the same stuff - Tesco or independent pharmacy seem to be cheapest. Not much iron gets absorbed from the pills (you need to look at the amount of elemental iron in each one, I think) I found after 6 months of 2 Spatone a day (very expensive) my ferritin had dropped below the bottom of the range, so no good for me.

  • The nhs does recognise saliva cortisol tests, but not all of the nhs. The only hospital where you can get them done is, i belive, is Southampton .... But if i gave got it wrong then its further round the coast.... Brighton?

    Probably in 30 years time they might recognise them....

    G x

    Edit...... Found this thread about it....... healthunlocked.com/thyroidu...

  • Also, the NHS recognise only Addisons or Cushings or absolutely fine. If you bloods are 1 point above Addisons, you are absolutely fine with no cause for concern.

    I found it very interesting that, on that Doctor in the House programme on TV, the doctor (who is also an NHS GP) said that saliva testing was much more useful than blood tests and did the test for his patients on the programme. Pretty sure he wouldn't have been allowed to in his GP surgery.

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