I'm feeling very confused and overwhelmed about my thyroid and what is happening with it.
I've been diagnosed with Hashimoto's following a diagnosed goiter and a scan. I'm on 50mg of Levo which I've been on since July and my doctor says is the right dosage.
My test results so far:
TSH (0.35-4.94)
May 8.5
July 3.1
Aug 4.6
T4 (9-19)
May 10.2
Aug 12.4
Yesterday I started to feel very poorly. The area where my thyroid is is painful, lumpy and aches. Words are disappearing from my head and I've got bad brain fog. I feel like I'm having heart palpitations/my heart is racing. I just feel all over the place really.
I felt like this 2 months ago and went to the doctors. Doctor did a full health check including taking my bloods (hence Aug results above). He also took my blood pressure and it was high.
Do you think what happened to me then and what is happening now is a Hashimoto's flare? I'm not quite sure what that is, but I'm trying to find a reason why I'm feeling so terrible.
Any thoughts, advice, very much appreciated.
Thank you.
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50mcg (not 50mg) is only the standard STARTER dose
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should always be below 2 when on levothyroxine
TSH of 2 as an absolute maximum when on levothyroxine ….often lower
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Do not take levothyroxine before your blood tests …but delay until after
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Vitamin D
How low was it
How much vitamin D are you taking
ESSENTIAL to test folate, B12 and ferritin too
Plus you should have had coeliac blood test at diagnosis of Hashimoto’s
I am SO grateful for your really quick response to my post. I absolutely hate speaking to my doctor about it as I just feel I'm being flobbed off. I asked for an increase last time (my August post) as advised, but was told no. In fact, he wanted to decrease my dose due to my high blood pressure, but thankfully didn't.
I have just called the surgery and a doctor (hopefully not the clueless one) is calling me back as I just can't function today and I can't work when I can't function, which makes me feel very stressed.
In reply to your questions:
August test was done in the afternoon. I'd taken Levo that morning.
I weigh roughly 66.6kg
Vitamin D -result 41 nmol/L
I am taking a high strength Vit D supplement (Boots high strength Vit D)
ESSENTIAL to test folate, B12 and ferritin too - never been tested for these as far as know
I'm on a gluten free diet since I was diagnosed and coeliac blood test came back neg.
The electrocardiogram revealed supraventricular tachycardia with 200 beats/minute (PSVT). The possible triggers of arrhythmia were investigated.
Results and discussion: In our patient, hypothyroidism was diagnosed (FT4=11.25 pmol/l (normal range: 12–22) and TSH=26.37 μUI/ml (normal range: 0.27–4.2)) as a result of chronic Hashimoto Thyroiditis (anti TPO>1/640).
We present a patient who presented with presyncope and supraventricular tachycardia with severe hypothyroidism. Patient responded well to thyroxine replacement with biochemical improvement, the disappearance of arrhythmia after restoration of euthyroidism suggests that hypothyroidism might be the cause of supraventricular tachycardia.
I'm on a gluten free diet since I was diagnosed and coeliac blood test came back neg.
I've just looked at that list of symptoms and I've got quite a few of them! I will write them down so I don't forget!!! That's really interesting about the palpitations - I know when I went I saw the doctor in August, that was one of the reasons he didn't want to increase the Levo.
Do you think what happened to me then and what is happening now is a Hashimoto's flare?
No. If it had been a 'flare' you would have been diagnosed with hyperthyroidism, you wouldn't have been put on levo, which is for hypothyroidism.
As I'm sure you know, Hashi's is an autoimmune disease where the immune system constantly attacks the thyroid in an attempt to destroy it, mistaking it for the enemy. During an attack, the dying cells release their stock of T4 and/or T3 into the blood, causing FT4/3 levels to rise sharply, and the TSH then falls very low. Your TSH has never been very low, therefore you have never yet had a 'flare' - not a good name for it because it's confusing. I prefer to call it a Hashi's 'hyper' swing, because that is more descriptive of what is actually happening, because eventually the excess thyroid hormone in the blood will eventually be used up, excreted, and you will swing back to hypo again.
So, that means that the cause of your symptoms was/is lack of thyroid hormones - hypothyroidism. Symptoms are not consistant, they come and go because with Hashi's levels fluctuate, as you can see from your blood test results. Nor do they always correspond to blood hormone levels. It's a very complicated disease. But the basics are easy to understand: low thyroid hormones - especially T3 - cause varied symptoms and can occur in any part of the body or brain. Because every single cell in your body need thyroid hormones to function correctly. There is no cure for Hashi's so the only thing that you can do is replace the missing hormone - levo is T4. But, to feel well, you need to be on the right dose, and your doctor is very, very wrong to say that you are on the right dose. The dose is far too small - the TSH is telling us that.
It's not enough just to have the TSH somewhere - anywhere - within the range. The aim of thyroid hormone replacement (levo) is to bring the TSH down to 1 or under. 4.6 is much too high. So, you need an increase in dose. And it sounds like you're going to have to insist on it if you want to be well, because it doesn't sound like your GP knows very much about thyroid. Iss there another doctor you can see that might be a little more clued up?
Unfortunately I keep seeing the same doctor. It's a bit pot luck with my surgery and because I've just called and I'm getting a same day appointment, I could get anyone.
I'm really struggling to understand what is happening to me and find it very overwhelming. I haven't really been ill before.
That is so wrong, isn't it. I like to know who I'm going to see before I walk in!
What is happening to you is that something has triggered an autoimmune response in your body and it is attacking you thyroid. What the trigger might have been is impossible to know. It just happens. Often after childbirth, or if you've been taking iodine supplements perhaps. But apart from that, no-one really knows what causes it.
Although stress can worsen Hashi's, I don't think it can cause it.
Were your brother's antibodies tested before being given a 'diagnosis'? As I explained above, Hashi's will have hyper periods, but that does not mean that the person has hyperthyroidism. The only way to tell is to test the antibodies:
TPO and Tg antibodies for Hashi's (hypothyroidism with hyper swings)
TSI and TRAB for Graves' (hyperthyroidism)
Unfortunately, a lot of doctors don't understand the difference.
In truth, I don't know if my brother's antibodies were tested. He lives in France. I've suggested he joins this forum as I think it would really help him (like it has me) to find support on his thyroid journey
I live in France, too. So, pretty certain he's had TPO and Tg antibodies tested, because they always test them on the first thyroid test - not so sure about the Graves' antibodies. But, just because they test them doesn't mean they understand the results! French GPs are as clueless as British ones!
I think NICE guidelines says doctors should dose based on Symptoms and on bloods results - so Doctor seems to be sadistic on two counts.
Good you are tolerating the levo and it has done a bit of raising T4 and lowering TSH. (some cannot)
I am gluten free, too - it is tough. Once I was stable on levo for several months, I did a trial consuming gluten a couple of times and felt tired and ill for say a week each time.
Likely you will get a blood test - while they are doing it ...
I would ask for iron ferritin, vit D vit B12, cholesterol, diabetic average blood sugar tests from Doctor too.
You've had some excellent advice and I've been exactly where you are. My NHS GP was/is absolutely useless. Them refusing to treat my hypothyroidism or increase my dose for months on end had kept me very unwell.
If you can see another GP/change practice then it's worth a shot. Many of us have needed to seek help privately in the end.
I have had excellent advice and I feel a bit teary about it all! It's so lovely people want to help.
I feel a bit baffled that (some) NHS GPs just don't know how to deal with it when so many people have problems with their thyroids. Mind you, I've had the same problem with the menopause too - they don't seem to teach much about it at medical school!
Yes I felt the same and I thought they knew what they were doing and so I let it drift. It's a real shock to the system when you realise you're going to have to make yourself better (with the advice from all these brilliant memebers).
It's almost like medical school dosent prepare doctors for women's health issues 🙄🙄 if it's not about reproduction they don't want to know!
I've just had a telephone consultation with a doctor I haven't spoken to before, and he seemed a bit more clued up!
He asked if my Levo dosage had been altered at all since I was first put on it (surely he could see it hadn't from my records?!). He seemed a bit puzzled that my last visit in August didn't result in a change of dosage (I may be imagining this, but he did seem a bit surprised).
I'm having my bloods taken tomorrow morning and also being tested for Folate, B12 and Ferritin, as you suggested. The doctor said my Ferritin levels were tested years ago and the result then was borderline in the range. The range has been changed and if I had the same result now I would be very low.
I'm being tested for something else too*, but between the phone call and now (about 20 mins), I've completely forgotten what it was. Honestly, my brain is so foggy, it's scary. I was also struggling to string sentences together when I was talking to him, so it was pretty obvious I'm not in a good place at the moment.
He wants to see the results, but has agreed, if they are in a similar range to August, I need my Levo dosage increased. I'm going to insist on it anyway!
*I think it was inflammatory markers? He is concerned my thyroid is tender and aching.
Thank you for your help SlowDragon and thank you everyone else who has so kindly commented on this post. I'm so grateful.
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