Endo appointment - the butterfly: I had an endo... - Thyroid UK

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Endo appointment - the butterfly

SusanAR profile image

I had an endo appointment this morning but didn’t get to see my doctor (I really like him and he’s very knowledgeable) - I got one of his wee friends 😡.

She said my results look good. My T4 is in the top of the range. I said “no it’s not, it’s right in the middle”. She said “the range is 9-21 so you’re in the top end.” I said “16 is in the middle of 9-21”. She said “yes you’re right so it is”. Great number skills there!!

I said that I’m feeling better but still don’t feel 100% and think I could be better. She then said that she doesn’t think my medication should be increased because she doesn’t want my TSH any lower so I asked how to increase my T4. She said you can’t without more medication. She then said she’s new to all this so isn’t very sure.

So then I asked about my T3 and said it could be causing the symptoms. She said that there’s no evidence to suggest that T3 levels make any difference and that I am converting all of my T4 into T3 - no idea where she gets that information. And that they don’t test T3.

Then..... SHE DREW THE BUTTERFLY. I should’ve walked out there and then but I politely said “thank you for the picture but I don’t have a thyroid”

What a total waste of my time, petrol and parking money!

So I have to go back in 6 months and stay on the same dose.

Can I ask specifically to see my consultant or do I have to put up with his ignorant friends?

Any ideas as to how to increase my T4 without increasing my Levothyroxine? Any vitamins I could try maybe?

Thanks for reading and any advice would be appreciated.

But please don’t draw me a butterfly!! 😂😂

27 Replies

Re who you see, this is the guidance:

"You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.

Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your outpatient appointment at the hospital where the consultant works and to be treated by that consultant's team. But this doesn't necessarily mean you will be seen by the consultant themselves."

SusanAR profile image
SusanAR in reply to MaisieGray

Thank you. It makes such a difference when you see someone who knows what they’re talking about instead of someone who admits that they’re new to this and is very unsure. I probably know more than her.

MaisieGray profile image
MaisieGray in reply to SusanAR

Yes definitely, it does. She can't help being new and inexperienced, and everyone has to learn how to apply their training effectively, but that should mean that in the interim she should put the effort into doing the right thing right, until it becomes automatic and effortless.

SusanAR profile image
SusanAR in reply to MaisieGray

Yes you’re right. It’s the system that’s at fault. She possibly felt out of her depth. I’m so glad I know I can come here for advice.

SeasideSusie profile image
SeasideSusieAdministrator

Oh dear ........ just Oh dear!

Can't do simple maths, obviously hasn't read your notes if she didn't know you didn't have a thyroid, but

She then said she’s new to all this so isn’t very sure.

Really!!!!!!!!

Heaven help us!

Have you had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Best test before supplementing. But selenium can help with conversion, so do you have FT3 as well as FT4 result to see how that is?

Don't worry, I can't even draw a stick man, let alone a butterfly :D

SusanAR profile image
SusanAR in reply to SeasideSusie

Thank you!

Calcium 2.27 (2.2-2.6)

Vitamin B12 583 (180-2000)

Serum folate 6.3 (2.8-20)

Ferritin 51 (15-200)

TSH 0.01 (0.2-4.5)

Free T4 16 (9-21)

PTH 9.9 (1.6-6.9)

Vitamin D 18 (25-162)

The doctor prescribed me 800 IU of D3 but I read up on it and I’ve been taking 5000 IU with magnesium and K2 since the end of May. She said today that 800 was a very high dose and would be more than enough!

They won’t test it again until next May.

I ask every time for them to test FT3 but they keep refusing and saying it isn’t needed.

Thanks for your help.

SeasideSusie profile image
SeasideSusieAdministrator in reply to SusanAR

Susan

Vitamin B12 583 (180-2000)

Not bad according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

If you want to increase it then it goes on to say

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Serum folate 6.3 (2.8-20)

Too low, this should be at least half way through it's range. You might be able to raise it with plenty of folate rich foods, or you could take a good B Complex containing 400mcg methylfolate such as Thorne Basic B or Igennus Super B. Ifyou take B12 then we need B Complex also to balance all the B vitamins. It's important, when taking a B Complex containing Biotin, to leave it off for 5 days before blood tests as Biotin can skew results.

Ferritin 51 (15-200)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Vitamin D 18 (25-162)

Presumable the unit of measurement is nmol/L, in which case this results means that you are severely deficient and if your doctor only prescribd 800iu D3 they they're not following the NICE Clinical Knowledge Summary which states that loading doses totalling 300,000iu over a period of weeks should be given - see cks.nice.org.uk/vitamin-d-d...

However, you are dealing with this yourself and since you've been taking 5000iu daily since May then I'd do a private home fingerprick blood spot test with City Assays to test your current level vitamindtest.org.uk/

PTH 9.9 (1.6-6.9)

I'm sorry but this is something I know nothing about, but as it's so far over range has anything been said?

You could always do you own thyroid tests to include FT3 with Medichecks or Blue Horizon, but FT4 and FT3 must be tested at the same time to see how well you convert T4 to T3.

SusanAR profile image
SusanAR in reply to SeasideSusie

Thank you so much for taking the time to look at my results.

I’ll look for the b complex now and get it ordered.

I can’t eat liver 🤢 but I eat broccoli most days and have home made lentil soup a few times a week. And I’ve started making my own hummus with chickpeas. Would that help?

The pth (parathyroid) they said was high because I had been vitamin D deficient for a long time and the parathyroid was working harder to get calcium.

I’ve read on here about zinc and selenium too - not sure if they’d help. I asked that question today too and she had never heard of that. I don’t think she had heard of much.

SeasideSusie profile image
SeasideSusieAdministrator in reply to SusanAR

If you're not vegetarian then liver pate and black pudding are good sources of iron, almost as good as liver. Any iron rich foods should help.

SusanAR profile image
SusanAR in reply to SeasideSusie

Great! I can have either of them.

Thank you!!

SusanAR profile image
SusanAR in reply to SeasideSusie

I have sent you a private message I hope you don’t mind 😊

Ajaeger profile image
Ajaeger in reply to SusanAR

Your high calcium and high PTH indicate an issue with your parathyroid. Since they are both high it is hyperparathyroid. My mother has this and it's been a huge struggle to get it diagnosed! Even her endo was reluctant to test her based solely on her high calicium levels. Turns out, her PTH was high as well. She also has low vitamin D. What my understanding of this is, is that your vitamin D production is downgraded because your calcium is high, so it doesn't need the vitamin D to help make more calcium.... that's why your vitamin D is low. Your calcium is high and therefore taking more vitamin D supplements will just make your calcium higher... too much calcium is a bad thing. You should not have high calcium along with high PTH. This indicated an issue with your parathyroid gland(s). Dr's like to give simple reasons for irregular blood levels when they should be trying to figure out the root issue. Taking vitamin D will not fix your parathyroid. Low vitamin D is not what is causing high calcium and high PTH levels. I'd read up on hyperparathyroid and go back to your Dr armed with info and knowledge and insist he investigate it further.

Ajaeger profile image
Ajaeger in reply to Ajaeger

Just realized your calcium is not high! Sorry! My bad! 😬

SusanAR profile image
SusanAR in reply to Ajaeger

I didn’t notice that either 😂😂

SusanAR profile image
SusanAR in reply to Ajaeger

Thank you!

I went on vitamin d and calcium for 4 months straight after I had my thyroid removed. And now need it again almost 3 years later. After reading your post I’m wondering if they damaged my parathyroid glands during the operation. I have read that this is possible.

I’ll definitely look into this and try to find out more.

How does your mum treat hers if you don’t mind me asking?

Thank you for taking the time to reply.

Ajaeger profile image
Ajaeger in reply to SusanAR

I have been so frustrated with many Dr's in recent years ( my 20 yr old daughter has hypothyroidism which we are still trying to get optimally treated by inadequate Dr's) but I have never been more frustrated and angry than I was at my moms endo. I've cried several times after my daughters appointments but at that particular endo appointment with my mom I barely made it out of the office doors before the tears started! He is the biggest self righteous, arrogant, a-hole I have ever encountered. He told us that since my mom is over 50 ( she's 76) that he wanted to take a wait and see approach to her hyperparathyroidism. .... wellll isnt that nice and convenient for him! He's going to retest her next year and if it goes sky high they would opt for surgery and remove the tumors causing her parathyroid issues! Hyperparathyroid is caused by benign tumor(s) on one or more of the 4 parathyroid glands. Removing the ones with the tumors is the only way to resolve hyperparathyroid issues. My mom is also hypothyroid but he won't treat her for that either! I practically had to beg him to run thyroid panel and when he finally agreed, I asked him what was in the thyroid panel... only TSH and FT4. I asked him why he wouldn't test her FT3 and he blasted me with the unimportance of it and told me the internet is full of wackos and "they" are wrong. My mom is sympathetic and living a half life. I feel so sad for her. I talked to my mom about self medicating with some T4 but she will hear nothing of it. She won't educate herself about thyroid or parathyroid issues and I can't always be there to go to the Dr with her ( we live in different cities). She thinks Dr's are all knowing and even warns me " don't make them mad" before we go in to see them if I'm there with her. Ugh! It's just so sad and I feel so bad for her. My dad died a couple years ago and she was his caretaker. Once he died, we all thought she'd have the chance to go do some things she had always wanted to do but couldn't because of my dads health. Now she can't go or do anything! Sits and just does zero practically. I think dr' s look at her like she's an old, depressed, overweight lady and just toss her aside! ... and she lets them! It makes me just so upset!

Well, sorry to ramble on with this novel! I am sorry to hear your dr appointment went so poorly and was so frustrating! Hugs to you 😊

SusanAR profile image
SusanAR in reply to Ajaeger

That sounds awful. What a terrible time for your family. I always think that it’s hard when it’s our own health but in some ways it’s even worse when it’s people so close to you and there’s nothing you can do to help. Or you try to help but nothing works!

I hope things start to get better for you. And you find someone who listens!

I prefer to see the same endo (she’s not a consultant but is great and knows my history), and was told to mention this at ‘the desk’ at check in and that would be fine. And it has been!

Re increasing levels without increasing dose, some people say taking meds at night helps, or (the obvious, sorry) take it first thing and don’t eat, drink anything other than water for an hour, no supplements for four hours, go light on calcium at breakfast. Make sure mins and vits up to scratch (tons of advice from admins on this site).

I’m sure others have good ideas.

SusanAR profile image
SusanAR in reply to beh1

Thank you. I’ll definitely try that the next time. And I think I would have the courage to walk out if they are so clueless next time!

I take mine at night when I get into my bed and take all my other medication first thing in the morning so I hope I’m doing that right.

I should have said that at the end she asked me if I could be depressed!!

I was so annoyed I told her straight that I really resented even the suggestion. That I am perfectly happy and I just want to be able to do things and that my 71 and 76 year old parents are having to do stuff for me because I don’t have the energy.

The butterfly and the depression. I really should have walked out.

Ha, ha! I feel your pain. Unbelievable isn’t it. Some things that happen to thyroid patients you just couldn’t make up if you tried.

The phlebotomist at my surgery said similar to me once. I made the mistake of mentioning that I had never had my T3 tested even though the consultant always requested it. Phlebotomist said that couldn’t be possible because if the consultant requested it then it would be done - we all know that doesn’t happen - anyway after going round the houses with her absolutely insistent if it was asked for it would be done she finally said ‘ you seem a bit depressed today’.

I just didn’t have the nerve to point out it was the conversation I had just had with her that was so depressing. Now I just her like the plague and always ask for the other phlebotomist

Someone should write a book about things we’ve been told. It would actually be funny if it wasn’t having an effect on our lives.

I’ve decided I’m going to phone before my next appointment and if it’s not him I’m seeing then I’ll cancel it. I’ve wasted far too much time already!

I already feel sorry for the next doctor who draws me a butterfly 😂. Or mentions depression. I’m pretty sure with their obsession about depression that they must have it themselves.

Good idea to do that. I used to think that when my hair was falling out in handfuls. I used to photograph it as it lay in the bath after I’d washed it and I used to collect it and put it in little bank moneybags and I dreamed of all sorts of interesting things I could do with them to the next person who said I didn’t need them worry because I had ‘lovely thick hair’. You can really feel quite murderous at times like that can’t you 😉

😂😂 I’ve had that too! My hair is ok because like you I used to have very thick hair. Now they say “well it doesn’t look thin to me”.

Today when I said that I had 5 hairs on my legs for the first time in 2 years she said “you must be much better then” 😂😂. Maybe if I only had 4 they might re-think my treatment.

Not having to do anything about my underarms and hairy legs was probably the only bonus about the whole thing.

I remember years ago when I was at an impressionable age my aunt telling me that my grandmother ‘rubbed her legs with some sort of stone’ when they were on a beach and she never had to shave then ever again.

I spent my life looking for magic stones and trying it (unsuccessfully) for myself. Now I know what I know I bet granny had some sort of thyroid problem!

How did you resist saying, "So you failed GCSE maths , then?" I'd really want to complain since she actually said she didn't know much about it and you were expecting to see a specialist

Maybe new to numbers too 😂

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