So upset after today’s Endo appt: I’m so upset... - Thyroid UK

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So upset after today’s Endo appt

Hillz2000
Hillz2000

I’m so upset after today’s endocrinologist appointment. So this was me going to yet another endo to try and get to the bottom of all my symptoms and my blood test results. She thinks I’m hyperthyroid as opposed to hypothyroid (despite all my symptoms, which she actually says doesn’t look thyroid related to her) which she is obviously basing on my suppressed TSH levels and stated straight to my face that positive TPO anti-bodies are irrelevant and don’t indicate Hashimotos. I would accept that if she had been able to tell me what that test is for if not to determine an autoimmune thyroiditis of some kind. She also told me that my hair loss (fists full every day) is symptomatic of the aging process. I am 34!! She wants to ‘start with the basics’ again and do blood tests....of which she isn’t doing b12 or folate (which I know are low and warrant treating) because she says it’s not her arena. I literally cried my eyes out during the appointment and asked her to consider this wasn’t a ‘hyper’ issue and to look at testing mercury toxicity from my leaking amalgams, Thyroid Hormone Resistance and Secondary Hypothyroidsim as possibilities.....she was pleasant enough but she was basically like ‘that’s not going to happen’. She will however be testing TGab. I will update in a week or so when I have the new blood test results.

Am I crazy to be upset? Do any of you think my existing results (see my profile) in relation to my symptoms possibly indicate Graves or Hyperthyroid?

47 Replies
oldestnewest

Your profile mentions estrogen dominance. Excess estrogen and poor estrogen clearance will decrease T3 uptake by increasing thyroxine binding globulin (TBG).

Look into natural progesterone cream to rebalance, this will help your thyroid replacement medication work better.

Hi Missimal. Thanks for this. Already have that corner covered. I’ve been using Ona’s 10% for 3 months now. No change in symptoms as yet, but I do sleep a bit deeper during my 14 days a month when I’m using it.

Good that you are already addressing that.

What meds are you on? NDT?

Absolutely nothing! This is my frustration. I’m getting bounced about from doctor to doctor and no one will diagnose firmly and treat anything!

Fingers crossed you get some answers from your recent blood tests 🤞🙏

Hillz2000
Hillz2000 in reply to Hillz2000

I have some Levo here bought by a friend in Spain for me and some T3 on the way from Cyprus. So as you can see, after 15 odd years of feeling rubbish and worsening in the last 6 months I’m the closest I’ve ever been to self-medicating, or atleast self administering a trial to see if either med or a combination improves my symptoms.

SeasideSusie
SeasideSusieAdministrator

Hillz2000

Am I crazy to be upset?

No, I cried each of the 3 times I saw the same endo, but not until I got back to the car, then I binned the b*****d, vowing no-one was ever going to shout at me or treat me like a child again.

You have positive TPO antibodies, that confirms Hashi's, doesn't matter if the TG antibodies come back negative or positive, it wont change anything, you'll stilll have Hashi's.

And if she thinks you're hyperthyroid/have Graves, get her to prove it by testing TSI/TRab antibodies.

As for the aging process, well if she's saying that to you at 34, I'm long gone, dead and buried and my age :(

Jeez, they do like to play around with people's lives!

I’m hoping those tests are included. I asked her to do thyroid stimulating test and she said she would ‘look into it’ but I’m not hopeful. I just wish these NHS docs would be more willing to go the extra mile and/or think outside the box instead of sticking to ‘the basics’ as she put it. I’m literally at my wits end and my husband is bored stiff listening to me.

fortunata
fortunata in reply to Hillz2000

My husband calls me a ‘thyroid bore.’ 😂People, even those closest to us, have no idea how debilitating this horrible condition is until they’re struck down by it. You’ll find plenty of people on here who know exactly what you’re going through. X

rosserk
rosserk in reply to fortunata

I can relate to that! Because people can’t see any physical signs they don’t believe we have all the symptoms we describe. It’s so distressing because you start to withdraw into yourself.

Referring to something being "due to the ageing process" is used whenever it is convenient to the doctor doing the talking, and they think any old rubbish will do.

I was first told something was "due to the ageing process" when I was 27.

Hillz2000
Hillz2000 in reply to humanbean

It’s so patronising and completely redunadant I feel. If losing fists full of hair was a normal aging process at this age being bald at 40 would be normal!!

greygoose
greygoose in reply to Hillz2000

How old is she? Ask her if she's experiencing the same symptoms as she ages.

Hillz2000
Hillz2000 in reply to greygoose

Lol she was in her mid thirties too I’d say!

greygoose
greygoose in reply to Hillz2000

Ask her next time you see her. lol

shaws
shawsAdministrator

Her attitude is enough to make anyone crazy as they seem not to be in the least concerned about relieving clinical symptoms.

Most on this forum have recovered by DIY and sourcing their own hormones and blood tests. At least one knows what's going on and we are aware when symptoms are being relieved - one by one.

Do you have the results of your latest blood test results that you can post, i.e. TSH, T4, T3, FT4 and FT3?

Hillz2000
Hillz2000 in reply to shaws

Hi Shaws. No just had the bloods done at my appt today so it will be a couple of weeks before I have them. Otherwise the results in my profile were taken fasting at 9am in middle of June.

shaws
shawsAdministrator in reply to Hillz2000

I assume it was not at the earliest? Did you have food before blood draw. Or you may have been lucky and and had a very early appointment and blood test.

Hillz2000
Hillz2000 in reply to shaws

It was a 9am slot of which I requested and stated that I wanted it at that time because fasting was appropriate for the most accurate results. My GP just said ‘oh I didn’t realise it mattered, ok whatever suits you best’. I then quietly peeled my jaw off the floor as I left the room.

SlowDragon
SlowDragonAdministrator

Sounds like yet another diabetes specialist who wouldn't know Hashimoto's if it jumped up and grabbed her

Looking on your profile.....your calcium is low, below range. This is very often due to very low vitamin D (a classic hashi/hypo problem)

Couldn't see a vitamin D test result....

If not been tested suggest you get it done via postal kit £29

vitamindtest.org.uk

Meanwhile improving your low B12 and folate might be a good place to start. A daily good quality vitamin B complex, one with folate in, not folic acid

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Are you on strictly gluten free diet? Very, very many of us with Hashimoto's find it essential

Only add one supplement at a time or make one change at a time or you can't tell what's helpful

Most endocrinologist have little interest in looking for root cause, considering gut connection or low vitamins. They are in the dark ages

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

Hillz2000
Hillz2000 in reply to SlowDragon

Hi slowdragon, no not on gluten free. I’ve tried a short burst of it before but wasn’t successful. In all honesty I should try again and harder but I’m so floored with fatigue that just finding the energy to do that would be miraculous.

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

I left more endo appointments in tears, than not for years......until came here to this forum, realised gut connection is key......got full private testing of thyroid and vitamins and addressed multiple vitamin deficiencies by self supplementing.

Vitamin D, was the key one. It wasn't drastically low, but enough to be seriously affecting how thyroid hormones work. Magnesium supplements were essential too

Absolutely strictly gluten free was, for me the turning point. Despite, like the majority with Hashimoto's, I tested negative for coeliac twice (20 years apart)

Confirmed as severely gluten intolerant after endoscopy.....despite absolutely no gut symptoms at all......more info on my profile

Vitamin levels are extremely important. Getting these optimal is essential for most. Then look at gluten

Endo's don't understand (or are disinterested in)antibodies. They have no medical treatment to offer

My own endo fascinated to see antibodies dropping on my private test results after going gluten free

NHS only ever test antibodies once or twice, so they never see this connection

Sounds like your endo is in competition with mine (who has now discharged me) for Worst Endo of the Year.

You're not remotely crazy to be so upset. I veered between sobbing and sheer rage during and after my appointments with my own Endonob.

I've given up getting any help or diagnosis on the NHS. It's grim, isn't it?

Hillz2000
Hillz2000 in reply to ShinyB

It shouldn’t be this way :( and even my husband is starting to roll his eyes...at me and not at the state of the nhs and how poorly they seem to understand the thyroid axis and it’s myriad of disorders. I’m still speechless that the doc today said that TPO antibodies is meaningless and doesn’t confirm Hashimotos!

ShinyB
ShinyB in reply to Hillz2000

Oh I am sorry to hear that :( Maybe your husband could read some of the posts on here to get an understanding of how difficult it is for you? It's hard enough not getting support from the supposed medical experts, without him rolling his eyes at you.

It's a total farce, isn't it? As I say, I've given up on them, as they haven't even given me a diagnosis. I went privately to see Dr Peatfield. I'm using my savings up at an alarming rate! And what about all the people who don't have the money to go outside the NHS? It's a disgrace.

Hidden
Hidden in reply to Hillz2000

Did they say what would confirm Hashi?

Hillz2000
Hillz2000 in reply to Hidden

Nope!

fortunata
fortunata in reply to Hillz2000

I’ll get my husband to give yours a ring. ☺️After all these years, even though he calls me a thyroid bore, mine’s well able to see how bad I was now that I’m as well as can be again.

I know doctors like this, and yes they can be wrong

If you feel you are hypothyroid but still

Have a suppressed tsh

I would do research on

Central hypothyroidism

It is a rare disorder

Hillz2000
Hillz2000 in reply to Courtlea

I asked her to look into that and have asked other doctors and they barely even acknowledge what you’ve said and just move on in the conversation. It’s the hardest thing to sit there and be disregarded over and over again and keep your cool. Yesterday I really didn’t keep my cool and cried my eyes out...it’s only a matter of time before I storm out of a doctor appointment!

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

Suggest you get full private testing of thyroid and vitamins and come back with new post once you have results and ranges

Then members can advise on how to treat vitamin deficiencies as first step

Hi

Actuaĺy, what your antibodies could

Be indicating is

Graves Disease

It is either or

(Hashimoto's or Grave's disease)

No Hillz2000, you are not crazy to be upset. Sounds a perfectly reasonable reaction. As I said on your amalgam filling post, it's not likely a conventional endo would show any interest in that issue. You will probably only receive support from a biological dentist or a functional medicine practitioner. But for an endocrinologist to be dismissive of your concerns about, um, *hormones*, is understandably very frustrating. You got some good advice from SlowDragon about things you can do to for yourself and when you have results back and post them here, I'm sure you'll get more helpful advice. :) Take care.

A note regarding amalgam: I was worried about this as well so got a hair test to find out what my mercury level was. It cost about 60£ and was certainly cheaper than a dentist. My level was surprising low and quite safe considering the volume of amalgam in my mouth. It was good to put that one on the back burner and prioritise my money on suppliments and NDT. For me, a good decision and I am feeling so much better these days. You're not crazy and you are not alone. Good luck. All best

Bless you! You are NOT crazy. And I could belt your flipping doctor! I used to lose handfuls of hair until my thyroid was properly treated. I had two bald scoops on the front of my head, which have now grown hair again.

As for TPO antibodies being irrelevant and not indicating Hashimoto’s, she needs to go back to the classroom!!

My doctor is also a personal friend. He’s retired now and we had him round for dinner a few months ago. Now he’s not practising any longer, he was able to admit that he knows very little about the workings of the thyroid and had never even heard of Hashimoto’s when I told him that’s what I thought I had because of my high TPO antibodies (>1000). He wouldn’t tell

me all this while he was still my doc, even though he was a personal friend!!

I’m almost 59. You are only two years older than my elder daughter. It’s preposterous that your doc says the hair loss is because you’re ageing.

I would tell your doc that you are convinced you have thyroid issues and insist that you would like to be referred to an endocrinologist.

I’ve had thyroid issues for ten years now. I only began to get the thyroid medicine I needed prescribed about three years ago. Before that I had to self medicate because I was so ill on what the doctor gave me. I have learned in this game that you have to be insistent if you want your voice to be heard.

Hillz2000
Hillz2000 in reply to fortunata

Believe it or not, that appointment was with an Endocrinologist!

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

Email Thyroid UK for list of recommended thyroid specialists, (some are T3 friendly should you eventually need it)

please email Dionne


tukadmin@thyroiduk.org

But first getting full private Thyroid and vitamin testing, improve vitamins with advice from on here and try strictly gluten free diet.

Then retesting.

fortunata
fortunata in reply to Hillz2000

I’ve just read the top of your post again. Sorry. I thought you’d seen your doctor. I must be having a brain fogged day. I’m bloody dumbfounded by her insensitivity. 😧

I’ll bet you £100 she was a diabetes specialist.

Hillz2000
Hillz2000 in reply to fortunata

Yup. I’d be willing to bet too! I don’t understand why there’s such a lack of thyroid specialists....I appreciate that diabetes is very serious (and I can say with some level of experience having had gestational diabetes in both pregnancies) and warrants a lot of attention....but why do so many endocrinologists specialise in it over Thyroid axis?

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

They perpetuate the myth that Thyroid issues are super easy to treat..... take the little white pill...... hey presto....fixed

Which is obviously completely incorrect, as demonstrated by this being by far the largest forum on Health Unlocked

PS. As for you being hyper because of low TSH, my TSH is usually below range around 0.02 and my endocrinologist can see that I’m not hyperthyroid. I would definitely insist that you’d like to see an endocrinologist, particularly as you have hypothyroidism in your family. X

Hillz2000
Hillz2000 in reply to fortunata

I see from your profile that you had the DIO2 test done. Did you get that done privately or was it NHS?

fortunata
fortunata in reply to Hillz2000

I had it done privately with Regenerus Laboratories. I think it cost about £80 and I had to send a saliva sample. Most useful £80 I’ve ever spent!

Hillz2000
Hillz2000 in reply to fortunata

I just hopped on over to Thyroid Uk and found the info on it. I think depending on what yesterday’s doctor comes back with after the bloods she took, I may opt to have that done. If it comes back positive atleast I can say ‘see, I’m not crazy....I need T3!’

I’m quite prepared for her to say I’m hyper or graves if they do the right blooming tests to prove it and properly rule out genetic issues with conversion, utilisation and central hypothyroidism. But until that happens, based on how ‘underactive’ my symptoms are I’m not accepting ‘hyper’ as a diagnosis.

fortunata
fortunata in reply to Hillz2000

Good for you! I told my doctor for about five years that I thought I needed T3. But he would never give me it.

There was another doctor at the surgery I go to who knew I was self medicating with Liothyronine (T3). She used to say, ‘You need to get off it. It’ll fry your brain.’

When I got the test results back showing I have a conversion problem, I felt like giving her the piece of paper and saying, ‘Stuff that in your pipe and smoke it.’ ☺️

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

Not available (yet) on NHS

Though one endocrine centre in Kent does offer it on NHS and guarantees T3 on NHS if you test positive

Certainly DIO2 test being positive (heterozygous) helped in my application for NHS funding of T3. Tested privately via regenerus

Hi guys thanks for all your advice last week. I’ve just put a new post up that updates you only results. Brace yourselves.....yeahyou guessed it....they didn’t test what they said they would!

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