When to change endocrinologist?: New member here... - Thyroid UK

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When to change endocrinologist?

Chenoa_Shepherd profile image
46 Replies

New member here, when is it ok to change endocrinologists? My current one shouted at me for self dosing with T3 that my previous endocrinologist prescribed me and he gave me a diagnosis of anxiety saying my symptoms of

Hard stool

Dry skin

Tiredness

Muscle spasms and cramps

Cold intolerance

Weight gain

Loss of appetite

Lack of concentration

Memory loss

Dizziness

Are not related to thyroid disease. I take 100mcg Levothyroxine and I was diagnosed hypothyroid in 2013.

Thanks

December 2017

TSH 4.70 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.5 (3.1 - 6.8)

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Chenoa_Shepherd profile image
Chenoa_Shepherd
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46 Replies
FancyPants54 profile image
FancyPants54

Your endo. is not helping you and he should not have shouted at you. You are under medicated. Just look at how low your T3 is.

To answer your question: now. Now is the time to change your endo. Good luck.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to FancyPants54

Thanks. I have made my GP aware of how he made me feel. I went to the first appointment with him and he asked me how I was. I said

"Much better since being on the T3."

His response

"YEAH BUT LOOK AT YOUR THYROID LEVELS. YOU ARE THYROTOXIC!"

*TSH <0.02 (0.2 - 4.2)

*FT4 38.3 (12 - 22)

*FT3 10.1 (3.1 - 6.8)

FancyPants54 profile image
FancyPants54 in reply to Chenoa_Shepherd

What!? He said that about the results you posted above?

That's ridiculous. You are barely in range on T3. Hopefully someone will come along who can tell you how you can get in touch with Thyroid UK for a list of approved endocrinologists who won't be talking out of their backsides.

FancyPants54 profile image
FancyPants54 in reply to FancyPants54

Oops. I see you posted new results. That T3 level is high. He might have had cause to suggest a small reduction. Had you taken any T3 that day before the test?

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to FancyPants54

No I hadn't

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to FancyPants54

Jun 2017

*TSH <0.02 (0.2 - 4.2)

*FT4 38.3 (12 - 22)

*FT3 10.1 (3.1 - 6.8)

He didn't even like these results on 150mcg below:

Nov 2017

*TSH <0.02 (0.2 - 4.2)

*FT4 25.2 (12 - 22)

FT3 4.1 (3.1 - 6.8)

And asked me to reduce

bantam12 profile image
bantam12 in reply to Chenoa_Shepherd

Shouting about it or not you are overmedicated and that can cause as many symptoms as being undermedicated.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to bantam12

Thanks. The endocrinologist maintains I am overmedicated now with a TSH above range

bantam12 profile image
bantam12 in reply to Chenoa_Shepherd

Is that a different TSH result to the above as that is not over range, it's your T3 being over range that's not good 10.1 is quite high.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to bantam12

December 2017

*TSH 4.70 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.5 (3.1 - 6.8)

bantam12 profile image
bantam12 in reply to Chenoa_Shepherd

Which are your latest results and the ones the Endo is worried about ?

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to bantam12

Latest results

December 2017

*TSH 4.70 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.5 (3.1 - 6.8)

Before that in June 2017 on 200mcg levo/20mcg T3

Jun 2017

*TSH <0.02 (0.2 - 4.2)

*FT4 38.3 (12 - 22)

*FT3 10.1 (3.1 - 6.8)

In November 2017. He didn't even like these results on 150mcg below:

Nov 2017

*TSH <0.02 (0.2 - 4.2)

*FT4 25.2 (12 - 22)

FT3 4.1 (3.1 - 6.8)

And asked me to reduce

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

If you look back at posts we have had lots of people on this forum who have had their Endocrinologist shout at them about T3 or results. Even if your results are over range it is not an excuse to shout at you. An Endocrinologist is not qualified to assess your mental health so you don't have to accept their opinion.

If it's any comfort, Doctors kept increasing my levothyroxine and due to lack of bioequivalence in levothyroxine at the time I became overdosed and my results were somewhat similar to yours. I wasn't taking T3 and never have. Just plain old NHS supplied levothyroxine. It's possible to accidentally go over range regardless of the thyroid medication you are taking. People with Hashimotos thyroiditis sometimes find a flare up of antibodies take them over range. You can simply reduce your thyroid medication and retest in 6 weeks and adjust again if necessary to bring FT3 into range. Discuss how to do this with your GP.

Do you have autoimmune thyroid disease? Do you have raised antibodies TPO or TgAb? You can read about autoimmune thyroid disease otherwise known as Hashimotos on Thyroid UK's website.

The symptoms you list sound like hypothyroid symptoms and your December results TSH 4.70 (0.2 - 4.2) TSH was above the lab range so your symptoms make sense. Why didn't your GP or Endocrinologist increase your levothyroxine dose then? What reason was given?

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

Thanks yes antibodies tested more than once. Most recent levels were done in May 2015

*THYROGLOBULIN ANTIBODIES 267.3 (0-115)

*THYROID PEROXIDASE ANTIBODIES 275 (0-34)

My endocrinologist said because my results aren't following a pattern I get no increase

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

Seaside Susies explanation and suggestions below are great. Do post your vitamin results when you get them. Did your Endocrinologist give you any explanation of why your results aren't following a pattern? If not, then it wasn't very helpful to leave you symptomatic without relief while giving no explanation of what is happening to your thyroid. Do read more about Hashimotos on Thyroid UK website. I saw 2 Endocrinologists who were unhelpful at best. This forum has given me better help and advice.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

The endocrinologist said he didn't understand why my results weren't following a pattern. When antibodies first came back high a GP did tell me I have Hashimotos

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

That GP sounds more helpful than the Endocrinologist. I expect SeasideSusie is spot on when she says the Endo is a diabetic specialist. You can Google and find out what your Endo's specialty is. If you find your GP helpful then stick with them.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

I checked him out and he is a specialist in diabetes and endocrinology and he has a masters in endocrinology as well

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

Sounds like a diabetic specialist then since it doesn't specifically state thyroid specialism. With a privileged education like that, no excuse for shouting at poorly patients, I would expect better manners.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

No thyroid specialism at all

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

The endocrinologist made it sound like I'm the only Hashimotos patient he has! He only agrees to taking of Levo so some knowledge of thyroid is there but not enough

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

Hmmm, that sounds familiar, you probably are!!! The rest have all decided to stick with their GP since he's behaved so badly to the thyroid patients. He clearly is NOT interested and only wants to deal with diabetes since that's where the money is in the NHS.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

Oh well, ditch him I shall! :)

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

I think it's a strategy he is employing to get rid of thyroid patients off his list...treat them badly and keep them sick until they go elsewhere. Maybe you should stay just to ANNOY him (only joking - there has to be a light moment in this thyroid nightmare). Seriously, you just need to do what you think best for you. This forum helped me a lot.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

Yeah staying to annoy him sounds tempting... ;) I think I'll just go with a better endocrinologist. I have another one in mind

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

Thyroid UK has a list of helpful Endo's they are not a recommendation but you might be able to see who is in your area. If you've got another one in mind though it sounds like you're making headway. If not, someone on the forum will give you the email address to get a list via Thyroid UK.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

It's one I've heard is a good endocrinologist, I won't give his full name but it's a Dr P S at Weston General

Nanaedake profile image
Nanaedake in reply to Chenoa_Shepherd

Can't comment as I wouldn't have any experience but good luck. I'm sure you've done your research!!

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Nanaedake

I can but try :)

SeasideSusie profile image
SeasideSusieRemembering

Chenoa

I often wonder who these doctors think they are. We are all human beings and deserve to be treated with respect. Just because he is a doctor doesn't give him the right to shout at anyone. I would have shouted back at him but I'm old enough to have the confidence to deal with these bullies now.

Looking at your results with the lower TSH and higher FT3 and FT4 makes me wonder if you have raised antibodies confirming autoimmune thyroid disease aka Hashimoto's. Have you had them tested?

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

Thanks yes more than once. Most recent levels were done in May 2015

*THYROGLOBULIN ANTIBODIES 267.3 (0-115)

*THYROID PEROXIDASE ANTIBODIES 275 (0-34)

SeasideSusie profile image
SeasideSusieRemembering in reply to Chenoa_Shepherd

Chenoa

So there you are, confirmation of Hashi's which is where antibodies attack the thyroid and gradually destroy it. When the antibodies attack the dying cells dump a load of hormone and cause hyper-type "flares" where the free Ts can go very high and TSH low. These flares are temporary and things settle down again. That is the nature of Hashi's.

Unfortunately, most doctors either know nothing about this, or they dismiss antibodies as being of no importance so they then end up blaming the patient for the results and say they are abusing their meds or some such nonsense.

You probably have an endo who is a diabetes specialist, most of them are. There's not much point in continuing to see someone who is so ignorant so ditch him, you don't need him.

You can help yourself where Hashi's is concerned by adopting a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Hashi's can cause gut/absorption problems which can result in low nutrient levels or deficiencies. You need to test

Vit D

B12

Folate

Ferritin

Post results when you have them, say if you are supplementing, and members can help.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

Ok thanks. Will get these results from GP. They were checked 2 weeks ago

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

I supplement B12 and vit D and folic acid, can post previous results

SeasideSusie profile image
SeasideSusieRemembering in reply to Chenoa_Shepherd

Chenoa

OK, also say what dose you supplement, we can see if the dose is appropriate.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

Nov 2017

(iron deficiency recurring since 2012, no iron but was on iron in 2016

Folate deficiency since 2018 - taking 5mg folic acid

Vitamin D deficiency since 2014, 800iu given, now taking 1000iu oral spray since March 2015

Given 3-monthly B12 injections started in Feb 2018 because haematology said level under 500 and I had symptoms of low B12. The injections do improve my symptoms)

Ferritin 59 (30 - 400)

MCV 81 (80 - 98)

*MCHC 357 (310 - 350)

MCH 28.1 (28 - 32)

Haemoglobin 120 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

Platelets 252 (140 - 400)

WBC 4.31 (4.00 - 11.00)

RBC 4.42 (3.80 - 5.80)

Iron 7 (6 - 26)

Transferrin saturation 15 (12 - 45)

*Folate 2.3 (2.5 - 19.5)

Vitamin B12 443 (190 - 900)

Vitamin D total 55.8 (50 - 75 suboptimal)

SeasideSusie profile image
SeasideSusieRemembering in reply to Chenoa_Shepherd

Chenoa

Your could start eating liver regularly to help your iron. Maximum 200g per week due to it's high Vit A content. Ferritin needs to be at least 70.

Vit D Council's recommendation is for a level of 100-150nmol/L. With a level of 55.8 you would be better taking 5000iu daily. See what your new level is and I can suggest what to take, along with D3's important cofactors.

Your B12 is being addressed so ensure you get your injections on time and if you feel the need to top up in between injections you could use sublingual methylcobalamin lozenges. When supplementing with B12 we need a good B Complex to balance all the B vitamins, eg Thorne Basic B or Igennus Super B.

Is your folic acid daily? You've not been taking it long but some people can't convert folic acid and you may be better with a Folate supplement, the B Complex supplements mentioned contain 400mcg methylfolate although that might not be enough at this stage. See what your new level is.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

Thanks. Folic acid is monthly. I think my ferritin might now be below 50 which would mean a new referral to haematology. If so I will make sure a new referral to haematology goes ahead.

SeasideSusie profile image
SeasideSusieRemembering in reply to Chenoa_Shepherd

Chenoa

Why is your folic acid monthly? It's normally 5mg daily.

NICE Clinical Knowledge Summary cks.nice.org.uk/anaemia-b12...

"Treatment for folate deficiency

Prescribe oral folic acid 5 mg daily — in most people, treatment will be required for 4 months.

However, folic acid may need to be taken for longer (sometimes for life) if the underlying cause of deficiency is persistent."

Unless you have been given a reason for taking it monthly, print that Summary off and ask questions.

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to SeasideSusie

Ok thanks. It is because my folate went over range before when I was first taking it daily. >20 (2.5 - 19.5) and I had no improvement in symptoms

Aurealis profile image
Aurealis

I wonder if doctors ever think it’s appropriate to shout at patients who don’t have thyroid problems because their tests are out of range. Really not good enough...

Chenoa_Shepherd profile image
Chenoa_Shepherd in reply to Aurealis

I had my ferritin out of range once but it was only because I had an infusion. I wasn't shouted at by my GP then.

My guess is the endo was either out of his depth or I was the only Hashi patient he has!

Aurealis profile image
Aurealis in reply to Chenoa_Shepherd

I think many doctors don’t want us because 5hey know they’ll only get us well if they ignore prevailing treatment protocols, and that places them at risk of negligence claims

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

please email Dionne at Thyroid Uk For List of recommended thyroid specialists, some are T3 friendly

tukadmin@thyroiduk.org

FT3 must be kept in range.

It is time to change your endo when you realise:

he is a egotistical megalomaniac

he doesn't know much about the thyroid

he doesn't care how you feel

his ego is more important than your health

Change Endo - never put up with being bullied. You are hypo and symptomatic x

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