Advice before endo appointment please

[Emyloulou]

I have my 2nd appointment with my endocrinologist next week and was hoping for a bit of advice before I go.

I was diagnosed as severely hypothyroid in Feb this year(tsh 147) and slowly started to feel a whole lot better until August when despite an almost suppressed tsh I became quite poorly, quite suddenly. Since then I have had constant severe nausea despite 7 different antiemetics, abdo pain, lost over 4 stones in weight, which having put on a lot in the 4 years it took them to diagnose the Hashimotos I needed to lose but it isn’t intentional, I have zero appetite, very tired, dizzy, high pulse when I stand, shaking especially in the morning, serious brain fog to the point where I couldn’t even spell my middle name and episodes of hypoglycaemia.

I’ve had abdo and pelvic ultrasounds, a brain mri, and endoscopy all of which have been normal. I even had my mirena coil changed incase it was that!

They have tested pth, calcium, ca125, h.pylori and along with the hundreds of other blood tests I’ve had done I had a few 9am cortisols taken which have never gone above 350, the lowest was just under 200. The endocrinologist arranges a sst at the start of October which apparently was normal, 9am 268, after 45 mins 534(they messed up taking the sample 😡) after 60 mins 581.

Since then my thyroid levels(tsh, ft4 and ft3) could not be any more perfect not just normal, all me vitamin levels are optimal and despite my B12 being over 550 the gp even agreed to B12 injections every other day for 2 weeks just to see if it helped. Sadly it didn’t 😔

I’ve stopped taking lansoprazole(surprisingly easily) and anything other than levo, liothyronine, ferrous fumerate and any other supplements recommend by seasideSusie.

All my symptoms fit with it being adrenal especially with the way it happened so suddenly as my thyroid was just about sorted. I’ve never felt so ill and need to stop weekly trips to the gp!!!!

Is it worth trying to persuade him to repeat the sst or am I wasting my time? Has anyone ever had a normal test and then subsequently been diagnosed with adrenal insufficiency? Is there anything else I should be asking because I know my thyroid results will be spot on and I don’t just want sending away.

I feel so ill, it’s getting worse and is now really making feel very down which is not like me at all

Thanks for reading and sorry it was so long x

[SlowDragon Administrator]

Can you post your actual thyroid and vitamin results and ranges, so members can advise

Are you on strictly gluten free diet?

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

What about other things that can heal gut, such as bone broth, probiotics etc

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Are you taking a statin?

[Emyloulou in reply to SlowDragon]

Thanks for your reply

My most recent results where

Tsh 0.03 (0.2-6)

Free T3 7.0 (3.5-7.0)

Free t4 16.3 (10-20)

The gp has said to stay on my current dose of levothyroxine 125mcg and liothyronine 25mcg

B12 586 (180-910) I’ve since had 6x loading dose injections

Serum folate 13.43 (>5.4)

Serum ferritin 68.1 (10-291) I started to take ferrous fumerate twice daily again after this

Calcium 2.32

Vit D was around 100 last time it was checked and I still supplement

I’ve been strictly gluten free since July, recently started taking milk kefir and have never taken statins.

I take levo, liothyronine, ferrous fumerate, Vit D3, K2MK7, selenium, magnesium, Vit C and a B complex x

[SlowDragon Administrator in reply to Emyloulou]

Yes these certainly look pretty good, so I am stumped for suggestions

Do you take T3 in divided dose? Tried different brand (I was astonished at difference between same dose of Mercury Pharma and Morningside Healthcare T3.)

Tried taking Levo at bedtime?

Again different brands of Levo work differently

You have mirena and somatostatin pinned to your post, I assumed the stomatostatin was a statin, but see its peptide hormone.

[Emyloulou in reply to SlowDragon]

I take levo and liothyronine at bed time due to taking Vit d and ferrous fumerate. Initially I took the liothyronine in split doses but it’s easier for me to do 1 dose. I did try splitting it again incase it was that causing the problem but it made no difference.

My liothyronine is Tiromel which I self medicate but with the gp and endos knowledge and my gp has monitored me. Thankfully I have 1 of those rare doctors who seem to do what works for there patients and I can only take mercurypharma levo which I realised quite early on!

I’m really not sure why stomatostatin came up because I’ve never heard of it? It must me having that Friday afternoon feeling 😂😂😂

[SlowDragon Administrator in reply to Emyloulou]

Like you I can only take MP Levo

Did you notice any difference going gluten free?

Just possible you need a bit less T3 now that gut may be healing

Do you feel better or worse after a walk? Or do you not have energy even for 10-15minute walk?

Thyroid Pharmacist talks about sometimes needing less medication as gut heals and antibodies drop.

We don't necessarily get hyper type symptoms when over medicated

How long did you leave between last dose T3 and T4 before blood test

Presumably test was done early am and fasting

Are you still using mirena coil?

[Emyloulou in reply to SlowDragon]

To be honest the only difference being gluten free is less reflux and being able to stop lansoprazole.

I have no energy at all, I’ve been off work for 4 months which is not like me at all and even going for a shower in the morning makes me shaky. When I’m like that and stand up my bp goes down and pulse goes up drastically but my bp isn’t low just the low end of normal

I started T3 after all this started in the hope that that was the answer but sadly not.

I left 24 hours between levo and my blood test, 11/12 for the liothyronine and it was done in the morning fasted.

I just need my life back now x

[Emyloulou in reply to Emyloulou]

And sorry yes I have a mirena cool which was changed 6 weeks ago on the off chance that was the cause. I got the original 1 about 6 years ago due to extremely heavy periods x

[SeasideSusie Remembering]

Emyloulou

How long did you leave off Levo and T3 before your blood test?

[Emyloulou in reply to SeasideSusie]

It was 24 hours for levo and 11/12 hours for T3. I know my ft3 is right at the top of the range but I still feel the same as I did when I wasn’t taking T3 and my results where worse x

[SeasideSusie Remembering in reply to Emyloulou]

Emyloulou

I'm wondering if you should just reduce your T3 a touch. To be at 7 with that range after 11/12 hours could possibly mean that you are overmedicated. You could drop to 18.75mcg and see how you feel.

Do you think you might be reacting to anything in any of the tablets/supplements you are taking?

Can you think of anything that changed in any way around August time when you started to feel this unwell? Absolutely anything at all - have you changed brands of anything you use in your household or you eat, have you decorated, bought anything new from furniture to cookware, anything, had a new pet - anything? We are surrounded by toxins everywhere, inside and out, on food, on our furniture, just wondering if you are reacting to something like that.

Have you thought about doing the 24 hour saliva adrenal test - Regenerus or Genova to include Cortisol and DHEA (not cortisol alone).

[Emyloulou in reply to SeasideSusie]

I did talk to the gp about reducing the T3 but as felt like this before I started it and even when I built it up little by litter my symptoms never changed he was happy for me to keep it at that dose. I’m get thyroid bloods done again on Tuesday ready for the endo appointment so depending on those results I’m happy to reduce if that’s what it takes.

The only things I can think of are I had an endoscope approx 2 weeks before I became ill which was not a very pleasant experience. They said I had gastritis and a hiatus hernia so I had to double the lansoprazole for 4 weeks. However I stopped taking it completely about 4 weeks ago to see if that helped and it hasn’t. Also we came back from Florida mid July, I even asked if it could be lymes last week but I had no bite or rash that I can remember. I’m starting to sound like a hypochondriac every time I set foot in the doctors surgery.

All of the supplements I’ve been taking since February thanks to your fantastic advice when I was first diagnosed, lost and quite poorly but nowhere near as bad as I feel now 😢

If I get nowhere on Thursday I’m going to order the saliva adrenal test x

[SeasideSusie Remembering in reply to Emyloulou]

Emyloulou

Also we came back from Florida mid July, I even asked if it could be lymes last week but I had no bite or rash that I can remember.

That is very close to the time when you started to feel so unwell. You don't necessary have a rash (I think), and a bite might not have been noticed.

I would start looking into Lyme - start here lymediseaseaction.org.uk/ab...

then go onto the symptoms list here lymediseaseaction.org.uk/ab...

then continue looking through the menu and doing some research.

I haven't seen rosetrees on the forum for a while, but if she responds to her tag in this post hopefully she may be above to offer some suggestions as she knows about Lyme.

[Emyloulou in reply to SeasideSusie]

I’ve become an expert “dr Google” since this started and some of the symptoms definitely fit which is why I asked the gps opinion. It’s on my list for the endo as well. Unfortunately I think it’s another one of those hard things to diagnose. Thanks for the links I’m going to have a look at them now

I’m driving myself and everyone around me nuts!!!

[SlowDragon Administrator]

You can edit your post to remove somatostatin

Click small down arrow on main post. Brings up edit. Then you can delete somatostatin

[SlowDragon Administrator]

August is a month after you started gluten free diet

I do wonder if now you are off the omeprazole and gluten free you don't need as high a dose as before.

One last ditch idea, you might try propranolol. (as long as you don't have asthma)

It's counter intuitive, as it slows conversion or uptake of thyroid hormones. But it also blocks adrenaline, giving adrenals time to recover. If you read my profile, I was on it 20 years (until gluten free)

I definitely had adrenal exhaustion when first on Levo. But that's not the same as Addison's.

Adrenals can't work in Addison's. But with adrenal exhaustion they don't want to work. Slight but subtle difference. Something to do with upset in HPA axis

I would describe propranolol as knocking the peaks and troughs off. Helping steady uptake so you don't run out of Levo or adrenalin

Do you feel worse in morning than evening?

Have you considered DIO2 gene test? Has to be private test, NHS won't recognise it yet

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

I had masses of tests when presenting with similar symptoms ( was in wheelchair often) when first started on Levo. Increasingly unwell with each increase in Levo. I had been undiagnosed a long time.

Tests included ACTCH test, 24 hour urine test, MS, pheocrhromacytoma, pituitary function test, MRI, electrode brain function etc

[Emyloulou in reply to SlowDragon]

I’m definitely worse in the morning in as far as I wake up shaking and my pulse is higher but the feeling unwell, tingling, weekness, abdo pain(comes and goes) and constant nausea is all day every day. I did wonder if the T3 was causing the tachycardia but I forgot to take it 1 night before bed and it was no different.

Since this all started I’ve stopped taking pregabalin and amitriptyline I took for back pain, oxybutanin(overactive bladder) and the ppi’s incase it was any of those.

Would having the DIO2 gene make a difference apart from conversation issues?

Did you get a diagnosis/treatment in the end?