Can I ask my doctor to send me to see an Endo?

[JillOliver]

My latest blood test came back as free T4 slightly higher than it should, can't quite remember the exact figure until I get my printed copy of the results, but I think it was only 5 above the norm and my TSH was very low, something like 00.5 or 00.15, I know there's a 5 in there somewhere... Anyway a doctor rang me about the results, a complete stranger who doesn't know me at all, never met her her before and quite simply said lower my levo to 125mcg because that's what I was probably on when I had a 'normal' reading of TSH at 0.39 (jn fact I had slightly upped my dose myself to 137.5, when I had that 0.39 reading)

I feel perfectly fine in myself, well apart from the usual symptoms, that suggest to me that I'm not on enough levo, let alone reducing my intake! I am constipated, cold, a bit fatigued, nothing spectacular though, but certainly not endless energy, dry skin, memory of a gold fish and brain fog, you know what I mean, going into a cupboard for a plate and my plates have never been in that cupboard before, ever! And attempting a sentence, then losing the right words etc If I lower my dose, all this is just going to get worse!

I have a doctors appt. tomorrow, am I well within my rights in asking the doctor to send me to see an endo? I have never seen one, despite being hypo for at least 11/12 years diagnosed and I believe I was for a while pre diagnosed?? I'm just fed up of feeling ok'ish some days and other days quite good, and having symptoms that appear to be the opposite of being on too higher dose, but being told time and time again by doctors my tests are off the scale, please lower your levo dose!

[helvella Administrator Thyroid UK]

You are most certainly within your rights to ask.

And, in your circumstances, it seems sensible to do so. We do see some positive stories about people seeing endos - though we also see some "why did I bother?" stories.

Sorry if this is repeating something you have already been told/asked for/had done, but suggest you request your GP does tests for:

vitamin B12

folates

iron/ferritin

vitamin D

They are so often low in people who are hypothyroid.

I hope your GP does those tests and refers you. Best of luck.

Rod

[alangardner]

jill, this is exactly how my lady started [ i had to aim a heater / fan directly at her face for her to be reasonably comfortable . but we have an exellent gp . in my opinion i think you do need to be CORRECTLY checked out as being thyroid-under/over --active so proper treatment can be given------make sure you recieve the correct tests and check results [ they cannot refuse to give you copie's ] with the others on this site ....that have more experience in this than we do at this time-----you will get unbiased info .......but always remember do not change your meds without giving the correct info to your gp or endo-----as they will assume an incorrect diagnosis----which will not help YOU ---- as good or bad as they may be they have to have the correct info to help YOU ....and if they are good or bad you can pass your experiences on to the rest of us .....lastly YES you can insist on being refered to a consultant [ endo ] that is your right as per the nhs rules....alan

[JillOliver]

Thanks Rod and Alan!

Rod, I had my B-12, folate and ferritin checked last year and they came back as follows:

B-12 = 607 ng/L - range of 190.00 to 900 ng/L

Serum folate = 20-2 ug/L - range of 2.00 to 19.00 - so this one was slightly high...

Ferritin = 48 ug/L - range 20.00 to 250.00 ug/L

Never had my Vit D levels checked, but I do take a vit d supplement daily. So never occured to me to even ask for blood test for this one...

Also, I mentioned to a really nice, understanding doctor (currently on maternity leave), can't wait for her to come back, last year that couldn't my ferritin be slightly higher than that, as I do a lot of sport, endurance etc (when I'm not too tired) and she agreed that it 'could' be higher and I was ok to take ferrous fumerate, but just one a day. Then the other doctor completely dismissed the idea! Said 48 was perfectly acceptable.

Thanks again,

Jill

[skyfall]

Yes under NHS guidelines (see Map of Medicine on NHS site under hypothyroidism) your GP should refer you to an endo if you're still symptomatic on thyroxine. I went through this - could not get a referral - still had the symptoms and discovered my adrenals were not functioning properly. NOTE - the symptoms of stuffed adrenals OVERLAP with hypothyroid symptoms. I too went through the cycle of increasing levothyroxine, hoping to feel better and watching my TSH drop[ out of range. Worth being sure what's really happening. In my experience if one hormone system's out of balance others will be too. Hope this helps. Endo should help with this.

[JillOliver in reply to skyfall]

Brilliant, thanks skyfall for the info! Interesting.........

Jill

[Jackie]

Hi make sure you also have a FT3 test, some doctors think if TSH low so will the FT3 be, need not be so, it is certainly not in my case. Also decide who you want to see before asking GP for a referral. They will not always send you to the best endo, just one they like or know.Lots of research!

Jackie

[JillOliver]

Update to this guys......

Just been to see my doctor, who completely dismissed the idea of sending me to see an endo, saying that there was no reason to do so, and appointments with endo's go through a triage process and that I wouldn't even get as far as an appointment with one!

He said my last lot of blood test results done in May last year, liver function test, would have shown something abnormal if I had problems with my adrenals, and that was all normal.

Now I have my latest blood test results, they are TSH <0.05 mu/L range 0.35 - 5.50

and T4 26.7 pmol/L range 11.00 - 23.00

He told me to lower my dose from 150mcg to 125mcg, which I have no intentions of doing, happy to lower it slightly by hacking pills in halves and quarters again, what a chore!

I do prefer to be slightly over medicated, which he knows, but he said that because I'm used to being over-medicated, when I'm on a 'normal' dose I then feel crap.

I also asked him why I have all the symptoms of not actually being on enough levo, when apparently I am awash with it and he couldn't answer that! I give up! All he could say was that if I stopped taking it altogether then I would feel really poorly! Blimey, tell me something I didn't know doctor!

Oh well, back to the drawing board! I'll play the game and lower my dose slightly and go back in about 6 weeks and have a another blood test.

I'm more annoyed about the fact that he completely dismissed the idea of sending me see and endo!

The good news is, he retires imminently!

[Heloise]

Jill, we've had a lot of discussions about "when" to take your last thyroid pill leading up to your blood test. If you take it within twelve hours, let's say, you'll show more in your blood than if it is over 24 hours and your T4 may look quite high. You might keep that in mind next time and also have blood taken as early in the morning as possible when your TSH which would be at the slowest so it's been said anyway.