I’ve got an endo referral from my GP and I’m now waiting for an appointment. I’m looking for an understanding/insight into this so I can ask questions at my appointment that are relevant to my symptoms.
What is hashimotos? and why hashimotos disease happens? I’ve been taking levo for over 20 years and been symptom free but I started feeling ‘rubbish’ 2 or 3 years ago. I’m getting really confused because I’ve read that hashimotos is hypothyroidism! Also, what can I expect to happen?
My test results from July 2020 are below and from these my GP has reduced levothyroxine to 75mcg from 125mcg. I’ve been gluten and dairy free since mid August. Negative blood test for coeliac. Any help will be great, thank you
TSH 0.03 (0.27-4.2)
Free T3 4.4 (3.1-6.8)
Free T4 26.3 (12-22)
Thyroglobulin anti 958.9 (0-115)
TPO antibodies 60 (0-34)
Total T4 154 (59-154)
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Molly139
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Hashimoto's is the cause of most cases of hypothyroidism. It's an auto-immune disease that slowly destroys the thyroid so that you become hypothyroid.
A brief rundown of Hashi's to help you understand:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Your GP obviously doesn't know very much about thyroid - none of them really do - and he should not have reduced your levo. Your TSH is very low - and that's probably all he was looking at - but your FT3 is less than mid-range, which is doubtless why you feel so bad. Your FT4, though, is over-range, so this shows that you are a poor converter, and need some T3 added to a reduced dose of levo. So, unless your doctor was prepared to give you the T3, he should not have reduced your levo, because your FT3 will also reduce, making you feel even worse.
One of the things you should ask your endo when you see him, is to test your nutrients: vit D, vit B12, folate and ferritin, because these will probably be low, making the situation worse.
As to why Hashi's happens, there are probably many, many causes, but the chances of finding the cause of a specific case are pretty low. You will probably never know, I'm afraid.
Thank you greygoose that’s very helpful. I’ll be reading it again and again though to digest it 😂. What causes an immune attack is it genetic? I have psoriasis too. Also, since I’ve been taking 75mcg I feel so much better (fingers crossed) the heart flutters have stopped and I don’t feel as anxious or jittery.
It's the disease, Hashi's, that causes the attacks. It can be genetic, but not always. There are all sorts of theories about what causes Hashi's, as I said. Some say it's due to leaky gut. Others to immune disruptors, like excess iodine, and the latest theory is that it's linked to estrogen dominance. I think it could possibly be all of these, but we'lll probably never know what caused yours or mine. We just have it, and have to get on with it, I'm afraid. And, even if it were possible to find the cause and reverse it, by that time, the thyroid would be so damaged that you'd still need thyroid hormone replacement for life. The thyroid cannot regenerate.
Thriva and my GP both said I was over medicated hence the drop in meds. Would being over medicated affect my antibodies? Or from my results is it definitely Hashimotos?
Oh, yes, it's definitely Hashi's. Your TPO antibodies are very high.
But, no, being over-medicated would have no effect on the antibodies.
I understand that Thriva and your GP both said you are over-medicated, but they are both wrong. They are only looking at your TSH, and possibly your FT4. But, they are ignoring your FT3 which is low. And, although doctors don't understand this, you are only over-medicated if your FT3 is well over-range.
Doctors, as a general rule, have no understanding of T3. For example, it doesn't seem to occur to them that if they reduce your levo, to bring your FT4 down - and possibly to raise your TSH, which is not likely to happen - your FT3 will also drop. And, as T3 is the active hormone, it's low T3 that causes symptoms. So lower T3 will mean more symptoms.
Unfortunately, the doctors that write the notes for Thriva, and other self-testing companies, are only common or garden GPs. They have no special understanding of thyroid. They just follow NHS guidelines - which are all wrong, anyway. So, their comments really are not worth having, and I wouldn't bother in future, if I were you. Mainly, all they do is upset people!
Hello greygooseI hope you’re keeping well and safe.
I’ve been gluten and dairy free for 4 months but last night I had a lapse! a full bar of galaxy and 2 Lindt balls! This morning I felt awful, anxious, jittery and fatigue. I’ve read that casein is similar to gluten could this have triggered it or stress about the lockdown or both? I have seen an amazing difference since I started gf and df and could kick myself for over over indulging 🤦♀️
Your FT4 is above range but your FT3 is only 35% through the range. This indicates that you are not converting T4 to T3 efficiently. T4 is an inactive form of the hormone found in levothyroxine, the body must convert it into the active hormone T3.
Do you have any results for ferritin, folate, vitamin B12 and vitamin D? If these are sub-optimal then that can cause problems with converting T4 to T3. You may see an improvement in your conversion and consequently, your symptoms, with supplementation of these vitamins/minerals.
It may also be the case that you need to trial liothyronine (which is T3), as you may have a genetic mutation which stops you from being able to convert efficiently (DIO2). Liothyronine is very difficult to get on the NHS as it's very expensive in the UK, but you can ask your endo for it, as they are able to prescribe it (GPs aren't).
Thank you Zazbag for replying every piece of info is helpful for me. My vit D was low I’ve been supplementing with 2000 vit d and 200 k2 mk7 also 4g of mag 365 all advice from Facebook Vit D group who have been great. No concerns over folate or ferritin from my last bloods.
You're very welcome. Just to point out that even though folate/ferritin might be in range, that doesn't mean they are optimal, so they might still need some improvement. Good luck!
It looks like your T4 Levothyroxine is too high. This will cause your TSH to read low. Your T3 is quite low. Looks like you may be a poor converter. I had similar results to yours. I’d been on Levothyroxine for 11 years. Sometimes I’d feel as though everything was racing in my body generally late morning. I’d feel overly anxious for no apparent reason. Then my cortisol went really low ( adrenals). I’d never heard of cortisol nor T3 or anything before all this. Then suddenly I became very weak. No rushes, no anxiousness, just weak. Low heart rate, low blood pressure etc. I was hospitalised. My T4 was too high. My TSH too low. T3 low. Very similar to your results. After seeing Drs that had no idea I went private. It was only then I was diagnosed as a poor converter. A DIO2 gene test that was positive also confirmed this. Since introducing T3 my health has improved so much that I feel at least 15 years younger. Now I look back and can’t believe how I’ve struggled for all those years. Back and forth to Drs with no help. It just beggars belief to be honest. I think you need a small dose of T3 and reduce T4. You could request a trial from your Endocrinologist.
And like yourself when my Levothyroxine was reduced I felt a bit better. But nowhere as good as I feel now the T3 was introduced. Don’t struggle with NHS Endo’s. In my experience they are useless. I have PM’d you my private only Endocrinologist. This is the fastest route to solve your issue and be in better health. I’ve tried the NHS route for 12 years and it took 2 consultations privately to get the answer.
Hi can I ask did your Endo prescribe you T3 separately or NDT? Also do you have to pay indefinitely now for private Endo consulations plus private prescription costs? Or can your NHS GP offer follow up support further to advice and direction from your private Endo? Many thanks in advance.
My private only Endocrinologist prescribed me liquid Levothyroxine which my GP has agreed to prescribe. My private only Endocrinologist prescribed me T3 which I got privately £60 for a years supply. My private only Endocrinologist intervened with my NHS Endo and now I get my T3 on the NHS. So now I’m on liquid Levothyroxine plus T3 on the NHS and have been for about a year now. I cannot believe how good my health now is.
Brilliant many thanks for this info. It is good to know there are some good doctors out there breaking the mould and prescribing patients what they need to get well and not what is the cheapest drug! Well done you for your persistence. So glad you got a positive result with your health. 👍
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