Advice on what to say at endo appointment - Thyroid UK

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Advice on what to say at endo appointment

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Hello I wonder if I could get some medication and dosing advice. I was diagnosed hypothyroid last year (TSH 17) and started on levothyroxine. I was really struggling with each dose increase and had to reduce back to 100mg after feeling terrible on 125mg. My GP couldn’t get me a referral to an NHS ends cos the local service said I didn’t meet there threshold. At the time I got some great advice from Shaws and others about private endos who might prescribe t3. Since the I have been offered an NHS appointment next month so decided to give it a chance. , I’m still struggling with brain fog, fatigue, muscle pain and terrible memory, can anyone advise what I should be saying to the endo and what I should ask for in terms of tests or treatment.? My latest results are as follows.

Test results from 17 July after eight weeks at 112.5 daily dose Teva levothyroxine.

Serum free triiodothyronine level 4.5 pmol/L [3.1 - 6.8]

Serum free T4 level 14.1 pmol/L [12.0 - 22.0]

Serum TSH level 1.89 mIU/L [0.3 - 5.0]

Serum vitamin B12 level 618 ng/l [200.0 - 960.0]

Serum ferritin level 169 ng/ml [25.0 - 480.0]

Serum folate level 13.9 ng/ml [3.0 - 18.0]

Total Vitamin D (serum) 144 nmol/L [> 50.0]

Also had a morning corsitol test three months ago that was too low and below range.

I’ve no increased to 125 mg for four weeks and am tolerating but still dizzy, brain fogged , muscle pain and tiredness ……familiar to all of us I’m sure.

The level of expertise and kindness on this site has been a real lifeline over the past few months

Thanks Mike

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12 Replies

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7 years ago

Ps I was tested negative for tpo antibodies six months ago and negative for gluten sensitivity so doesn’t look like hashimoto

SlowDragonAdministrator• in reply to7 years ago

You also need TG antibodies tested. NHS refuses to test TG antibodies if TPO are negative

Personally I would always recommend trying strictly gluten free diet for 3-6 months regardless

I found that out the hard way - 24 years on Levothyroxine, turned out, despite no obvious gut symptoms, to be extremely gluten intolerant- see my profile

These results show you need further increase. FT4 should be near top of range- eg 18-19. FT3 at least over 5.5

Low cortisol. Supplementing a daily vitamin C can help offer adrenal support.

Ask for DIO2 gene test (you very unlikely get this on NHS....but no harm asking!)

thyroiduk.org.uk/tuk/testin...

There is one area in Kent that offers DIO2 gene test on NHS and guarantees Liothyronine prescriptions for life if test result is positive

Teva is dubious for many unless lactose intolerant

Perhaps change to different one and stick on that

• in reply toSlowDragon7 years ago

Thanks for the advice SlowDragon, you are very kind to share your experience - this whole thyroid thing is so confusing - I'll definitely push for a DI02 test or chase up a private one - it keep thinking about trying for t3 but always get persuaded to try to optimise levothyroxine first. Thanks Again

Mike

SlowDragonAdministrator• in reply to7 years ago

Yes your results suggest you can probably can get Levothyroxine dose a bit higher yet

Only if FT3 remains low, then consider adding T3

FancyPants547 years ago

Well one thing you must push your endo for is to investigate that low cortisol test result further. You are trying to take your levo when your cortisol is low so it's going to cause issues. Have you ever tried taking your hormone at bedtime? Some swear by it. I can't do it. It keeps me awake, but others love it and it might help your body to produce more cortisol overnight.

• in reply toFancyPants547 years ago

Thanks for the reply, I was thinking of switching to nighttime Levi, so will definitely try that Fancypants

crimple7 years ago

Some people do not tolerate Teva. Quite a few on here in fact!

• in reply tocrimple7 years ago

Thanks crimple, yes it was withdrawn a few years ago for being dodgy. Now it's back out minus lactose and in a range of 1/2 dose sizes. I was getting a different brand every prescription before so the idea was to see how I got on sticking to one for a while

Sallybones7 years ago

Hi Mike77, in a similar situation but I know we are all different. On my 4th Endocrinologist but have at last got them looking at my cortisol levels, only because I paid for a private saliva cortisol test, which showed I had unmeasurable waking cortisol but a peak level about 1pm I think, then nothing again. Not one Endo I saw over the last few years ever checked that area. Only interested in my bone health and as usual everything else 'normal'!! Though I know with the help from this site that I'm far from 'normal'. It helps.

Have all the same awful symptoms you mention plus others but the worst one is the absolute exhaustion (flat battery syndrome I call it) and inability to enjoy and start living again.

So today I had a Short Synacthen Test at the hospital, to see if my adrenal glands respond to the signal my Pituitary gland should be sending to them to produce cortisol to get you up and 'running'. They also did an early morning cortisol blood test (though it was 8am by then - I'm usually awake at 6am) and checking things like Growth Hormone levels. I will have to be patient til Sept 12th for next appt. I didn't have anything to eat and only drank water before the test even though they tell you it's ok to do so. I thought my usual morning coffee might skew results!!

With help from here It was suggested I may have central hypothyroidism which involves the Pituitary Gland so I'm putting off thyroid treatment until I know where I am with this bit of the jigsaw.

So keep pushing for the Cortisol investigations. Will be interested to know how you go on as I don't know anyone else in a similar situation to myself.

Best wishes SallyB

• in reply toSallybones7 years ago

Hello Sally, sorry to hear you are having such a struggle and I hope they manage to give you a definitive diagnosis and treatment that helps with your flat battery. My exhaustion has eased off but I am enjoying a spell of muscle weakness, brain fog and dry eyes. In the past when I heard someone was hypothyroid I just assumed it was trivial and about gaining a few pounds until they gave you the right medicine, I’d definitely settle for that right now. Good luck with the next endocrinologist appointment and the tests, I hope you get some answers.

Mike

Sallybones• in reply to7 years ago

Thanks Mike. Ha ha Yes I had that simplistic view too!! How naive!

The randomness & frequency or infrequency of symptoms can be so irritating because you never know which you're going to have to deal with from day to day.

I found that each one started off and disappeared then little by little never went away.

This site is brilliant when you're dealing with our health system. Never alone.

Hey onwards and upwards SallyB