So fed up with patronising doctors: I’ve been... - Thyroid UK

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So fed up with patronising doctors

Foxtrot89 profile image
35 Replies

I’ve been exhausted and unable to work for a year and a half. The slow progression into illness seriously started just over 2.5 years ago.

I have TPO antibodies and LOADS of hypo symptoms (and have for years even when well) but I’m not overweight and my blood tests aren’t low enough for them to pay attention.

Visited the doctor today and although she at least did listen to me and sympathise eventually the question came out...

“Have you generally been an anxious person over your life time?”

YAWN. Here comes the antidepressants. I’m so so fed up of being patronised with mental health stuff.

She didn’t have much to say when I said the first thing that happened was I was getting exhausted from exercise, not anxious.

She did at least agree to write to an endocrinologist and ask whether a trial of levothyroxine would be suitable.

I’m upset that they try and palm everything off as anxiety.

**** SIDE NOTE - positive!!

I’m just so grateful that I had already discovered Metavive I via this forum so THANK YOU whoever mentioned that to me! I’ve been on it a week and already noticing improvements.

I was going to wait until after the doctor but then my rational side took over and figured I could always stop Metavive if the doctor miraculously helped me immediately. I’m glad I didn’t wait :)

If you have any helpful advice on how to deal with any follow ups with her, that would be great. I took my private blood test results and a ticked list of all my thyroid symptoms from Thyroid UK’s printed check list.

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Foxtrot89
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35 Replies
Hennerton profile image
Hennerton

You now need the post the blood tests with all reference ranges to enable members to comment. Sorry but it is meaningless without them, or have you already posted earlier?

Foxtrot89 profile image
Foxtrot89 in reply to Hennerton

Sorry that my post was meaningless to you. I am frustrated and looking for some help from people who’ve experienced this treatment.

I’ve posted results before but yes I can put them on the thread shortly for people to comment on that as well.

Hennerton profile image
Hennerton in reply to Foxtrot89

Sorry, I did not intend to suggest that your entire post was meaningless but so often new members, just as you have, write a very long post, giving lists of symptoms and info about treatment or lack of it and all this hard work composing and typing the post is wasted unless the blood tests are shown. Nobody can hazard a guess at what is going on unless they see these and indeed it would be very wrong to do so.

What is always evident on this site is the absolute integrity of all the members and to maintain this integrity, members cannot reasonably offer advice without knowing all the facts. I hope this helps you to understand that it was in your interest that I asked for the tests and I am sure you will now receive very helpful advice.

Foxtrot89 profile image
Foxtrot89 in reply to Hennerton

It’s fine, I’ve posted them below if you are interested in looking :)

Hennerton profile image
Hennerton in reply to Foxtrot89

I do not think I can add anything to the replies you have already received, except to say that your mention of the very active person (but with a poor diet) you used to be rings alarm bells for me, particularly if some of your vitamins and minerals were low at that time. Sometimes a body crashes under that kind of stress, (mine did!) ) so now be kind to yourself, eat the very best diet you can, sleep well and let your body recover. Your thyroid results are not dire and you may find you now improve speedily with the Metavive. Wishing you lots of luck and good health soon.

Foxtrot89 profile image
Foxtrot89 in reply to Hennerton

Thanks! Yeah I absolutely agree. In hindsight I wish I’d either slowed down or eaten better (or both!)

I think the first thing to go low was my ferritin, and not really surprising given my level of exercise and dislike of eating red meat frequently.

I reeeeally hope I improve speedily now. I’ve had a lot of patience in being ill for nearly 2 years but it’s really wearing thin, especially as winter approaches (I am such a summer person).

I am definitely eating better and prioritising rest and relaxation (now that I have no choice haha).

I hope you’re feeling better now too?

Hennerton profile image
Hennerton in reply to Foxtrot89

Mine is a ‘no thyroid’ issue, following thyroidectomy for Graves’ disease and I bitterly regret ever agreeing to it with my useless endocrinologist. But I always fear I brought it upon myself by working too hard, although I have always eaten a very good diet, with the emphasis on proper home cooked food and loads of fruit and vegetables. Who knows what triggers these autoimmune problems? I am much more careful now about sleep and pacing myself. I have learnt to say ‘no’.

Foxtrot89 profile image
Foxtrot89 in reply to Hennerton

So sorry to hear that you had that treatment :( I do agree though that pacing and saying “no” is a big thing.

I find people do get annoyed when they’ve been used to me always saying yes but hopefully I can save my health over the longer term.

Rmichelle profile image
Rmichelle

Just like to agree with you , gp's always give the diagonisis of anxiety or a virus because they cannot be bothered to look into things deeper, they put my thyroid disease down to viruses on 2 occasions and anxiety on 3 occasions as I was breathless, how wrong they were!!!! Good luck I'm sure others will comment but yes , send in your blood work!!

Foxtrot89 profile image
Foxtrot89 in reply to Rmichelle

Thank you. I just find it so upsetting that they seem to tar you with that brush and then suddenly nothing else can be wrong with you as it’s all just anxiety? Do they not even acknowledge that anxiety can be the RESULT of a health condition not the main condition itself?

She listened to me quite readily but then it seemed like she checked my records (I have had CBT and panic attacks) and then changed her tune a bit.

I shall post my results shortly, thanks :)

Out of interest how did you eventually get a diagnosis of thyroid disease then?

Rmichelle profile image
Rmichelle in reply to Foxtrot89

Yes after doing my own research of my symptoms I went to the doctors and put a list of all my symptoms together alongside what tests for the thyroid I wanted done and also iron def and hey presto I was correct, I was hyperthyroid with she ere iron defiencey too, then followed graves disease and hashimotos disease, help from this forum has been great I joined over a year ago😀 lots of other tests have followed but also had other invasive tests done which was not needed as GPS did not listern for a few months

I hope you get the treatment you need and you must keep fighting it I'm sure other hypos will respond shortly I'm sure hennerton didn't mean to upset you with how it was worded Meaningless, your post is far from it and I can imagine lots of people will want to advice you and take a little peep at your bloods.😊😊

Foxtrot89 profile image
Foxtrot89 in reply to Rmichelle

Thanks Rmichelle! I feel fortunate that I have been able to do my own research looking into it as well, because last time I was unwell for several years and the docs only ever “diagnosed” anxiety, never even offered me any tests.

Back then I trusted the doctor’s word, so them telling me I had anxiety made me more anxious!

Now when they say it it just makes me annoyed that they aren’t listening to all the other symptoms I’m listing. As soon as anxiety comes up BAM that’s it. Have some antidepressants.

I asked her what the risk was in giving me thyroxine if she deemed my blood results to show I didn’t need it. She stated that it “could make my anxiety worse” and “could be dangerous for my heart as it could raise my heart rate” (she never tested or asked about my heart rate. It’s round about 59-65, so not high anyway?)

I told her that untreated hypothyroidism causes anxiety and heart problems anyway, so what harm would a short trial do?

Heloise profile image
Heloise in reply to Foxtrot89

Hi Foxtrot, You are still in the initiation period but when you get past that you will see that conventional doctors and even endocrinologists have no idea how and where the thyroid performs. Your brain and heart need T3. If your TSH is above 2.0 there is not going to be enough to supply your entire body. Every cell needs thyroid hormone along with vitamin D which is a must. We are often depleted of that as well. I'm glad you are taking something but both your thyroid and adrenals need to be treated. I often post Dr. Bergman's video as it helps you realize the extent of the problems associated with low thyroid and usually high cortisol.

youtube.com/watch?v=SDphVgA...

Foxtrot89 profile image
Foxtrot89 in reply to Heloise

Thanks I’ll try and make time to watch that later. I am taking quite a few supplements including adrenal support, which I started before the Metavive.

I take Thorne Adrenal Cortex, only 50mg a day in the morning, just after the Metavive. I also have Jarrow’s adrenal optimiser and lots of vitamins & minerals to ensure I’m getting enough.

Foxtrot89 profile image
Foxtrot89 in reply to Heloise

Thank you for sharing that video it was really helpful. I had picked up a lot of the info elsewhere but it really highlighted and hammered home that the adrenals and thyroid need to both be balanced and as one goes up the other goes down.

I’m not sure whether I maybe need to take a bit more adrenal cortex as I’m only on 50mg a day.

Heloise profile image
Heloise in reply to Foxtrot89

I like Thorne products, too. I just use the dose recommended as it is probably the amount you would only absorb. Your adrenals are overworked DUE to the fact your thyroid is underproducing. You haven't taken any thyroid hormone, right? Your doctor must need some thyroid hormone herself from hearing her responses. I know you spoke about your husband as well. Does he go to the same one? These doctor might as well be statues. Consider getting your own hormone.

Your numbers are not terrible so doing all that you are doing just might be enough but your TSH did change and while not usually helpful to know, when you are NOT taking hormone I think it is very essential to know. Dr. Bergman talked about TGB binding to estrogen. Often we are estrogen dominant. Have you thought of trying progesterone?

Foxtrot89 profile image
Foxtrot89 in reply to Heloise

Yes indeedy!! That’s next on my list. I just did a test which I should get back within a fortnight. I almost definitely have low progesterone as my periods are only 3 weeks apart.

I did take progesterone cream before and it was lovely, made me feel a lot calmer. Then I got scared that I could be having too much as I hadn’t had any tests, so I stopped.

Do you have any idea whether adrenal cortex would balance progesterone a bit? Since some progesterone is made in the adrenals it should, shouldn’t it?

Ok yes I guess that makes sense about adrenals overworking due to thyroid not yet being where it should be. Perhaps I’m ok on 50mg of the Thorne Adrenal Cortex for now then? I hope so.

I started Metavive I (15mg pig thyroid) 7 days ago and feeling a lot better already (I have a long way to go but the difference is noticeable! I’m sleeping better already).

I realise my levels don’t appear awful but I’m used to a VERY active lifestyle so I think it hit me harder and quicker than someone who’s a natural couch potato.

I used to be out exercising / dance / gym etc. for at least an hour a day, sometimes up to 3, all while working 6 days a week running my own business. I never took any supplements back then and ate a poor sugar laden convenience food diet :/ fruit and plenty of fish but rarely enough veg.

My partner hasn’t seen that doctor, no. In the past we’ve just seen random doctors so no continuity. Never seen one worth sticking with at that surgery yet.

Heloise profile image
Heloise in reply to Foxtrot89

Having hormones balanced is so important and wonder why doctors seem to have no interest. Only functional doctors seem to care. Look at Ray Peat articles. Doctors like him know how important it is. We've had many talks on adrenal hormones and in the latest one they had said pregnenalone was called the memory hormone. It is able to produce whatever is needed from the adrenals but I noticed more improvement with progesterone (anti cancer and protective, also builds bone) and adrenal cortex which allowed my T4 and T3 to go up. You know how you feel so really the best doctor is you. Get good sleep and perhaps digestive enzymes or HCL Betaine is a good idea since our gastric system is also low. Be sure you take D3 with K2 which optimizes all other hormones. I don't know if European ranges are the same as U.S. but here are the optimals. Also good articles on this site. stopthethyroidmadness.com/f...

Foxtrot89 profile image
Foxtrot89 in reply to Heloise

Thanks! Yes I too found that Adrenal Cortex made a big difference for me.

I do take D3 and K2, yeah.

I’ll definitely take a look at Ray Peat. Meant to look after that video you shared then forgot!

MangeshThakur profile image
MangeshThakur in reply to Heloise

Yes, your right hormones balanced is important and that is really very surprising doctors not taking part after blood test doctors need to take action but local doctors taking time to act and that will bad impact on the patient, logintohealth.com/blog/ here I read one article about that and hospitals

Heloise profile image
Heloise in reply to MangeshThakur

Thank you, Mangesh, that is an interesting website.

Foxtrot89 profile image
Foxtrot89

Thriva blood test (July 2018).

B12 (active) 300.00 pmol/L (25.1-165.0 pmol/L)

Ferritin 59.1 ug/L (13.0-150.00 ug/L)

Folate 34.4 nmol/L (8.83-60.8 nmol/L)

TSH 2.02 mIU/L (0.27-4.3 mIU/L)

FT4 17.8 pmol/L (12.0-23.0 pmol/L)

FT3 4.82 pmol/L (3.1-6.8 pmol/L)

Anti TPO 92.5 kIU/L (0.0-34.0 kIU/L)

Thyroxine 92.0 nmol/L (66.0-181.0 nmol/L)

Anti thyroglobulin antibodies (TGAB) 18.4 kU/L (0.0-115.0 kU/L)

Vitamin D 84.7 nmol/L (50.0-200.0 nmol/L)

When I was still able to work and exercise but discovered my ferritin was low (Feb 2017) my TSH was 1.33.

I know this isn’t the only important number but interesting that it was lower when I was only just starting to get exhausted.

Will post Sept 2018 results below.

Foxtrot89 profile image
Foxtrot89

Sept 2018 thyroid test Thriva:

TSH 2.03 mIU/L (0.27 - 4.3)

FT4 16.4 pmol/L (12 - 23)

FT3 4.52 pmol/L (3.1 - 6.8)

Anti-Thyroidperoxidase antibodies 91.3 kIU/L (0 - 34)

Thyroxine (T4) 82.8 nmol/L (66 - 181)

Anti-Thyroglobulin antibodies (TGAB) 20.2 kU/L (0 - 115)

Cholesterol was above 5, but when I told the doctor she said that rising cholesterol (despite good diet and walking every day) was not indicative of thyroid issues until it was at 7 or 8?

Rmichelle profile image
Rmichelle in reply to Foxtrot89

Well it looks like you have hashimotos😊 tpo antibodies are above range.

Foxtrot89 profile image
Foxtrot89 in reply to Rmichelle

Indeed...but the doctor didnt seem fussed about anything much thyroid wise.

She did agree to write to the endocrinologist to ask about a thyroxine trial, but presumably only because I was so adamant that it was a thyroid thing not just fatigue from anxiety. I’m not holding out much hope for them being helpful and acknowledging it...until maybe one day further down the line when my thyroid is destroyed enough.

Rmichelle profile image
Rmichelle in reply to Foxtrot89

They do not know enough about the thyroid, plus ignorance is bliss, they are not interested in any immune disease but at least you have been referred, I wish you luck with that journey, good luck and don't give in🍀🍀

Hormone-hell profile image
Hormone-hell

I'm fed up of the 'post viral fatigue' diagnosis too!

Foxtrot89 profile image
Foxtrot89 in reply to Hormone-hell

Sorry to hear that! Do they just try to diagnose that and then offer no other solutions? It doesn’t seem like a diagnosis that should be final, there has to be a reason why fatigue won’t go away.

Hormone-hell profile image
Hormone-hell in reply to Foxtrot89

Hey, I got it before I was diagnosed but now I am diagnosed they don't say it as much!

SlowDragon profile image
SlowDragonAdministrator

As you have Hashimotos (high TPO antibodies) are you on strictly gluten free diet?

If not you might want to try it

It often helps, sometimes significantly

Lots of posts on here - just search gluten free

Presumably you are supplementing B12?

Foxtrot89 profile image
Foxtrot89 in reply to SlowDragon

Thank you, yes I am on strict gluten free. I am on low FODMAP too due to major bloat, anxiety and fatigue from many foods. So bored of what I eat but at least I seem to be feeling better on the whole.

Yes I have 1150mcg B12 every day, 250mcg in my B complex and 900mcg sublingual spray. Tried cutting down to just the 250mcg in the Complex when I saw the levels were high but felt very tired after just a few days so readded the spray.

SlowDragon profile image
SlowDragonAdministrator in reply to Foxtrot89

Your vitamin D could be a bit higher around 100nmol

Do you supplement magnesium?

Also daily vitamin C to support adrenals

Foxtrot89 profile image
Foxtrot89 in reply to SlowDragon

Yeah I thought that might be the case so I upped the Vitamin D after that test.

Yeah I do supplement magnesium, 300mg Swanson powder magnesium malate in the morning and 100mg Doctors Best chelated magnesium glycinate lysinate a couple of hours before bed.

I take just over 1000mg Vitamin C every day.

SlowDragon profile image
SlowDragonAdministrator in reply to Foxtrot89

Also perhaps test homocysteine and MMA

nutris.viapath.co.uk/pages/...

Using test of Homocysteine levels to check for low b12 despite high apparent B12

b12-vitamin.com/homocysteine/

Good explanation on homocysteine

veganhealth.org/b12/hcy

Oral as good as injections

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Foxtrot89 profile image
Foxtrot89 in reply to SlowDragon

Thanks, those links were handy.

It’s also good to know that sublingual is just as good, as I’d rather not have to sort out injections!

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