2 months ago my Levo was increased from 100mg a day to 125mg. I’ve been feeling under the weather but I’ve had this winter cold/cough so many seem to be suffering from. My partner is a nurse and the other day said my heart was beating v fast & when he then took my pulse it was over 100.
So today I had a nurse appointment anyway so i asked her to check. My blood pressure was 148/95 and my pulse was 106! Ive never had high blood pressure. She took bloods (reason for appointment), but these didn’t include thyroid as she said I would need to see the doctor.
I’m wondering if I should drop back to 100 or see the doctor first?
Sadly I have none of the nice symptoms-eg weight loss 😭
I do feel a bit ‘weird’ spaced out but it’s Monday, January and I slept poorly!
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Your FT4 was very low, so, it's hardly likely that an increase of25 mcg sent you over the top. However, as you have Hashi's, you could be having a Hashi's 'hyper' swing, which has nothing to do with your dose. Do you know how Hashi's works?
Can I ask for more advice on a hashis hyper swing?
I don’t have a lot of knowledge b it my experience is that my heart rate goes high, often over 125bpm, when I increase my thyroxine but goes back to down to the 40s quite quickly, within a few days to a week. I don’t know why.
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.
After every attack, 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 do 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 get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.
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 by 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, but it 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.
I very much doubt your doctor does understand how it works. Not many of them do because they don't learn about it in med school.
The one thing I am really bad at is supplements. I buy them and take for a week or 2 and then forget. I have a list of resolutions and that actually needs to be top!
I’m gluten free and have been for years.
I need to order an online test as I am assuming these issues are to do with my thyroid but they may not be which is more worrying.
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
You also need B12, Folate and ferritin tested
What other vitamin supplements do you currently take ?
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
I have 3 monthly b12 injection for low b12- they never re test and I haven’t asked.
Yes gluten free for 4 years now!
I’ll order a thyroids check, great idea. My gp only does t4 and tsh. I asked about antibodies once and they said there was no point as I would always test positive which I guess is true.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
When diagnosed my antibodies were off the scale- over 1000 & 800 ish. I’ve only ever had checked once since, and the result just said - antibodies- yes!
I have a better for you vit k spray. I’ll pick up selenium, b complex & magnesium. However I take my Levo in the morning so these will have to be at lunch. I will also look at a higher does of vit D. I do get out lots and had 3 sunny holidays last year.
Many people find TPO antibodies slowly drop after going strictly gluten free.
This is something medics are very rarely aware of as antibodies are only tested once on NHS
My endo and GP both fascinated to see my regular private blood test results (all recorded on spreadsheet so you can see results over time ) clearly show TPO antibodies falling steadily after I went gluten free in 2016 (after 24 years on Levothyroxine and still very high TPO antibodies)
SoMy bloods were all pretty good. My vit D is up to 61- not brilliant but 2 months ago it was 17! Only abnormal thing as my ESR- my doctor marked this as ‘expected’... I’m going to doctors tomorrow.
Back to doctors today. Have been given tablets to stop the bleeding and a referral to a gynaecologist. Heart rate 109 and BP 158/98 ☹️. Have a 24 hr monitor from tomorrow.
Doctor said it’s too soon to check my thyroid as it’s only been 3 months? Anyway I’ve ordered one from Medichecks because I’d like to know what my antibodies are up to. Feel awful.
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