So fed up and so confused 😢 Have I been misdia... - Thyroid UK

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So fed up and so confused 😢 Have I been misdiagnosed?

Angie_Phalange profile image

Told I had Hashimotos, now being told I might not!

I went to see a well known private endocrinologist in Edinburgh last Sept. He diagnosed Hashis and put me on levothyroxine. I had no antibodies but my thyroid was multi-nodular. My TSH at that point was 5.9. To cut a long story short, he over medicated me and I ended up in A & E getting an ECG. He would not accept that starting me on 100mcg of Levothyroxine was inappropriate. I stopped taking Levo and my TSH crept up to 6.4 within a couple of months.

I resumed Levo at a lower dose and this time, I went to see a female endo at the same private hospital in Edinburgh. She was more interested in finding out which school my child goes to and telling me about her personal life. I’m not being unkind, I was so desperate for help and she just wasn’t interested. She didn’t even do the right blood tests. I told her that the Levothyroxine was like poison to me - it made me want to crawl out of my skin. She said that if I stopped taking it, I’d get very ill.

After much consideration, I decided to give up on seeing private endos, ditched Levo and started self-medicating with NDT.

As my symptoms are still ongoing (I’ve only been on NDT for a couple of months), my GP sent me to see an NHS Endo at the Western Hospital in Edinburgh. I saw him on Friday.

He’s saying that my original diagnosis of Hashimotos could be wrong! My symptoms of extreme fatigue, muscle weakness, brain fog and throat feeling constricted could be something else! He said that my TSH has always been in range as it was under 10 etc etc. Now, I know that a TSH of 5.9 and 6.4 is too high.

I’m so fed up and literally have no idea what to do next. I’m still taking the NDT, I’ve bought 4 bottles from the States. At the moment, my TSH is 0.85 (0.2-4.5), my FT4 is 10 (9-21) and my FT3 is 5.17 (3.10-6.80).

I don’t know what to do, do I give NDT 6 months? The NDT is certainly better than the Levo, I’ve had some periods of good mental clarity, am not as cold and not wailing like I was on Levo.

The last 12 months have been horrendous. What is wrong with me?! If endos can’t help, who can? If it’s not Hashis then what is it? The NHS took some blood tests and said he’d phone me this week.

Just want to pack it all in to be honest.

30 Replies

I noticed on your posted results from Medichecks that you had not mentioned anti-body results. Also no results for B12 - Folate - Ferritin - VitD - perhaps I have missed something - if so - apologies !

He said that my TSH has always been in range as it was under 10 etc etc.

I have never seen a TSH range which had 10 as the top of the range.

Yup. That’s what he said.

Doctors lie and mislead patients whenever it suits them.

I’ve seen 3 endos now. More confused and frustrated than ever!

You are definitely hypothyroid with a TSH which has been as high as 6.4. If you are feeling better on NDT then I think you should stay on it. Giving up treating your thyroid will just leave you hypothyroid again.

At the moment, my TSH is 0.85 (0.2-4.5), my FT4 is 10 (9-21) and my FT3 is 5.17 (3.10-6.80).

Free T4 10 (9 - 21) is 8% of the way through the range.

Free T3 5.17 (3.1 - 6.8) is 56% of the way through the range.

At what point people feel well is an individual thing, but most people on the forum would probably prefer a Free T3 higher than 56% of the way through the range. Free T4 is often quite low in range when on NDT or on combo T4/T3. You almost certainly need to raise your dose if you still don't feel right, in order to raise both your Free T3 and your Free T4.

What dose are you currently on and how long have you been on your current dose for?

Having a multinodular goitre does suggest you might have autoimmune thyroid disease (Hashimoto's). The fact that antibodies haven't shown up positive is not really important, apart from the fact that people with hashi's tend to have problems with results that fluctuate - and that can be very annoying and makes people's lives difficult.

Some people have got some stability back by trying out dietary changes such as going gluten-free - but there are differences of opinion on this.

Thanks. He said that I was subclinical. He also said it was very rare for someone to do as badly on Levothyroxine as me 😞

I’ll stay on the NDT (Nature Throid) for now. Realised my FT3 should be higher so increased to 2.5 grains and planned to hold for 8 weeks. All the reading I’ve done details my symptoms as being consistent with Hashis.

He also said it was very rare for someone to do as badly on Levothyroxine as me

I think the problem is likely to be that he doesn't believe people who try to overturn his prejudices. Thyroid patients are mostly women and doctors assume that women exaggerate, so he probably dismisses or ignores a lot of the complaints he hears about Levo. And he has no doubt been told that treating hypothyroidism is simple - just treat with Levo and everything in the garden is rosy. Again, he probably dismisses the people who complain because he "knows" that Levo is perfect.

Just feeling like a medical anomaly!

Hi

If I were you, I wouldn’t bother seeing anymore Endocrinologist.

I saw an Endocrinologist and he was as much use as a chocolate fire guard.

“ he also said it was very rare for someone to do so badly on Levothyroxine as me”.

Perhaps he would like to make that statement in front of a bunch of members from this forum. What a load of rubbish. It makes my blood boil listening to statements like that.

I would test your antibodies, via private bloods. You have already been given information on that. If positive then go gluten free.

I’m self medicating, as I couldn’t get on with Levothyroxine at all.

It’s not a quick fix and I’m not there yet, but I’ve got control over what I do, my blood tests and results and increases. I have Hashimoto’s.

GP’s and the majority of Endocrinologist rely too much on Levothyroxine, and if we don’t improve they try and make out we are nut jobs and it’s all in our heads.

Good luck & Best Wishes

Peanut31

I think you’re right. An amazing lady who had terrible experiences with endos in Scotland told me that the best thing she ever did was to leave endocrinology behind.

Very few doctors know the actual meaning of the word 'subclinical'. It's the NHS that likes your TSH to get to 10 before diagnosis - I think that's because it means that less people get diagnosed! You are hypo when your TSH reaches 3, and in some countries you would be treated at that level. Your endo doesn't sound very bright, actually. Just because something is rare, doesn't mean it doesn't happen.

I would never advise anyone to see an endo. Most of them are rubbish and understand nothing about thyroid. This is a prime example! Don't let him get you down. You probably know more about thyroid than he does. :)

You are hypo - your bloods prove it - and it is possible to have Hashi's without high antibodies. Even if you don't have Hashi's you're still hypo, because there are lots of things that can make you hypo. So, carry on with the NDT, and get your FT3 up to a level that makes you well. And don't bother with ignorant endos anymore. :)

Thanks GG. Am sticking with the NDT. What do I say to this NHS endo when he calls?!

Who knows what to say to an endo! You could try not picking up. Or just say 'thank you very much, but no thank you'.

I agree with greygoose,

Couple of options:

1: ignore his calls & letters. They do that to patients anyway.

2: say that you don’t feel you are getting any better. Don’t explain anymore to him, you don’t have to explain.

3 politely say no thank you. (I did this option, but, I was paying private to see him).

The more experienced members can guide you on here, everyone is different and one treatment doesn’t suit everyone despite what the NHS thinks.

As I said I’m self medicating with T3, it’s a very bumpy ride and I’m still not well, but I’m in control of my own health, increases, blood results.

Take care & Best Wishes

Peanut31

Thanks, appreciate your advice. I hope you’re on the well road soon. This is all pretty scary.

Sus64 profile image
Sus64 in reply to humanbean

Humanbean, could you please tell me how to do the math to calculate what percentage through the range a lab result is?? I'm an idiot. Or I'll blame it on brain fog. :-)

humanbean profile image
humanbean in reply to Sus64

Free T4 10 (9 - 21)

Free T3 5.17 (3.1 - 6.8)

You need to know three things :

1) The result (R)

2) The bottom of the reference range (B)

3) The top of the reference range (T)

...

I could post this in one step as :

(R - B) / (T - B) x 100

...

To do it in smaller steps :

Step 1) Calculate T - B

Step 2) Calculate R - B

Step 3) Calculate [ (Result of Step 2) divided by (Result of Step 1) ]

Step 4) Multiply (Result of Step 3) by 100.

...

So for your Free T4, following the above steps :

Step 1) (T - B) = (21 - 9) = 12

Step 2) (R - B) = (10 - 9) = 1

Step 3) (Result of Step 2) divided by (Result of Step 1) = (1 divided by 12) = 0.083

Step 4) 0.083 x 100 = 8.3% which is approximately 8% which is what I quoted further up.

...

To do the same for your Free T3 :

Step 1) (T - B) = (6.8 - 3.1) = 3.7

Step 2) (R - B) = (5.17 - 3.1) = 2.07

Step 3) (Result of Step 2) divided by (Result of Step 1) = (2.07 divided by 3.7) = 0.559

Step 4) 0.559 x 100 = 55.9% which is approximately 56% which is what I quoted further up.

Sus64 profile image
Sus64 in reply to humanbean

Awesome, thank you very much!

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL Thyroid AND vitamin testing privately

If an ultrasound showed damage consistent with Hashimoto's, then you have Hashimoto's. Apparently about 20% of Hashimoto's patients never have raised antibodies.

heyhashi.org/hashimotos-low...

Or you may only have raised TG antibodies, and NHS don't test these

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If on NDT (or T3), make sure to take last dose 12 hours prior to test.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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 gut connection is very poorly understood

Your last endocrinologist sounds like a clueless Diabetes specialist with little idea of thyroid disease

Thanks. Tested negative for coeliac but looking at gut health anyway. I’ve been taking Symprove which is fantastic. Love it.

SlowDragon profile image
SlowDragonAdministrator in reply to Angie_Phalange

Vast majority with Hashimoto's are not coeliac, but a high percentage find strictly gluten free diet helps or is essential

Coeliac is just variation of gluten intolerance

The only way to know for certain is to try it for 3-6 months. If you find it helps, stick on it

IBS is often gluten related. But you don't need any gut symptoms to still find improvements by going strictly gluten free

So you had a starter dose of 100mg Levothroxine? Could it be that had you started on a dose of 50mg and gradually increased dose you mightn’t have had such a bad reaction? It’s maybe not the Levo but the inappropriate dosing that caused your problems? I agree with you all, Endos are shocking. I work with my own doctor now on dosing.. I have to persuade her sometimes but she’s much better than any endorsement I’ve seen.

Yes, he started me off on 100mcg. I tried it again Jan-Jun this year, starting on 25mcg. Could never get past 50mcg. Gave it 6mths. It was hellish.

I was started in 100mg of levo with a TSH of 40 and was fine at that had some nausea but instantly felt better I tried NDT for a while but found i had low T4 and high in range T3 and didn't feel well on this, so now I'm trying levo with some T3 I've done all this myself no endo or GP input I've never even bothered telling the GP my mum has been hypo 20 years and she's never felt well and carries slot of weight I don't want to go down that route!

It’s awful that we’re on our own with this. We know our own bodies though!

I recently saw an Endo who said my results were fine when T4 and T3 were well below the bottom figure. He also said I had never been on sufficient Thyroxine and he had a patient on 650 a day thyroxine. When I said "poor woman" he was not amused!

Awful!

Hi. You are so not alone. Iv had all your symptoms and they are ALL in hypo list. Hope you feel relief soon. Xx

Crackers starting you so high, start everything slow so you don't shock body too much, shame on him really, what annoys me is we know more now and our lives are in their hands and they get healthy salaries and keep us poorly, I've read many times that 50 is starting dose, I started 25 Xxx

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