I was diagnosed with Hashimoto’s Hypothyroidism at age 40 with blood results of:
TSH >100 (0.27 - 4.2 )
T4 - 3.4 (11 - 25)
TPO - 218 (0-34)
It took a long time to feel better, but eventually I settled on a dose of 75mg levothyroxine and 20mg liothyronine daily.
I have functioned okay on this dose from the age of 41 to 44.
Now, at 44, I have had a frightening episode of high thyroid levels. Symptoms were racing heart, high blood pressure, palpitations, extreme ringing in ears, extreme pressure in head and extreme drowsiness (not tiredness, but a drowsy ‘out of it’ feeling).
Blood results were:
TSH: <0.01 (0.27 - 4.2)
T4: 13.5 (12 - 22)
T3: 10.4 (3.1 - 6.8)
Once I saw blood results, I immediately stopped all medication and all symptoms resolved over the next 4-5 days.
I actually then felt very well for a few days, and then the tiredness and muscle pain started to kick in.
I took one dose of the 75mg levothyroxine and just 5mg of the liothyronine. Within 2 hours all the over medicated symptoms started to come back. I stuck with it for 2-3 days, but the symptoms were rapidly getting worse and I had to stop.
I tried again a week later with levothyroxine only, but the same thing happened.
I then checked my bloods. They were:
TSH: 10.4 (0.27 - 4.2)
T4: 7.5 (12 - 22)
T3: 1.9 (3.1 - 6.8)
After seeing these bloods, I took just 5mg of liothyronine and straight away I am back to extreme pressure in my head and deafening ringing in my ears.
I am absolutely at a loss now. I obviously still need the medication, but I just cannot seem to be able to take it anymore.
Without the medication, I feel the tiredness and muscle pain starting to kick in, but as soon as I take anything I feel like I am going to keel over and it is 100 times worse than not taking anything.
I haven’t been able to work or have a life at all for the last month whilst all this has been going on, and I am desperate for help now.
If anyone has any ideas what is going on, I would be so grateful.
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GP46
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I would suggest that when you feel overdosed that you stop taking your thyroid hormones. As soon as you start to feel hypothyroid again you could restart your Levo at a lower dose than normal for you.
In Hashi's the immune system attacks the thyroid every so often and damages or kills off some of the cells of the thyroid. These damaged/dead cells contain thyroid hormones - either T4 or T3 - and these hormones end up in your bloodstream. These excess hormone can be spotted in your blood tests.
If you did a blood test under these circumstances it will look as though you have become hyperthyroid, rather than hypothyroid.
These immune system attacks can go on for hours, days, weeks or longer. When the immune system calms down and you become hypothyroid again your thyroid will have become slightly more hypothyroid than it was before, and you might need a higher dose than before.
In the meantime you just have to give yourself the amount of hormone you can tolerate.
These results :
TSH: <0.01 (0.27 - 4.2)
T4: 13.5 (12 - 22)
T3: 10.4 (3.1 - 6.8)
suggest that, temporarily, you don't need T3 because it is well over the range. But you might need some T4 sooner rather than later. During a Hashi's attack there isn't much point in testing unless you really want to. You just need to be flexible, and be ready to cut or add in your hormones based on how well you feel.
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.
How long after your last dose of levo & T3 did you do the blood tests?
This is something that can happen to some people who have previously been treated for hypothyroidism and then stop the replacement hormones. I am unsure why other than it could be an over reaction of the body to thyroid ormone when its really desperate for them.
You may also find it harder if your vitamin levels are low which is very common in hypo people due to the low stomach acid being hypo causes.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Then start on a very low dose. See what you can tolerate, it could be 25mcgs Levo or even less.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
You might like to look at trying LDN, low dose naltrexone. It has to be started with a very low dose & steadily increased over 3 months. It has a anti inflammatory effect & can reduce the symptoms of Hashimoto’s eventually reducing the amount of thyroid hormone needed. It may well calm down your flare.
It’s available privately through clinic 158 based in Glasgow but prescribing is done over the phone. You can self refer on their website. It’s reasonably priced. You would need to show blood test results & your prescription details.
I’ve taken it for 18 months now & have found it very helpful. There is plenty of info online for you to research.
Hi if I were in your shoes (and over the years I have been.) I would try breaking my daily dose down into smaller potions over the day. I take my largest dose at night because the daytime doses especially the morning one makes me feel dreadful.
How long before test were last dose levothyroxine and last dose T3
Do you normally split your T3 as 2 or 3 smaller doses spread through the day
Day before test ALWAYS split T3 as 3 doses spread through the day with last 5mcg dose approx 8-12 hours before test
if test was done as recommended
These results look like you needed SMALL reduction in T3 …..and possibly SMALL increase in levothyroxine
Suggest you get back on 75mcg levothyroxine every day. Split dose if necessary to tolerate it. Try half dose levothyroxine waking and half dose bedtime
Essential to test vitamin D, folate, ferritin and B12
To answer a few questions, when my T3 went up to 10.4, I was feeling really quite frighteningly ill. I was getting atrial fibrillations and my blood pressure and heart rate were sky high all the time.
For this reason, I stopped all meds immediately, and waited for these worrying symptoms to resolve (which they did - I felt much better after a few days).
My problem now is that I just can’t get back on them, andI am feeling much better without anything.
I have tried with tiny 5mg doses of liothyronine, but this immediately brought the symptoms back.
I’ve also tried just 25mg levothyroxine, and again the symptoms came back straight away.
Most recent bloods now show T3 has gone down to 1.9 and TSH shot up to 10.4, so I need to get back on some meds but every time I go near them, the symptoms come back with a vengeance.
Even with a TSH of 10.4, I feel better taking nothing.
When I do try taking something, there’s not even enough time for it to be impacting my levels much, I’m reacting within a few hours of taking it (even the Levo).
It’s like I’ve become sensitive to the drug, rather than my thyroid levels being the problem.
The body doesn't like sudden changes in thyroid levels. I have experienced this myself and it was a huge and very lengthy struggle to get back onto levo.
Just start with a very tiny amount of Levo, even 1/4 of a 25mcg tablet. The bad symptoms will pass, honestly. T3 may be too much at the moment.
Fine is not good enough. They can be 1 point above the bottom of the range and a doctor will tell you that they are 'fine'. This is not the case at all and we need OPTIMAL results.
just work your way up. start with 25mcg Levo and slowly add more over 3 months until you get back up to your correct dosage. You may have to skip one or two days a week to stop yourself slowly going hyper. Dont worry about blood tests just use your hyper and hypo symptoms to guide how much Levo to take.
This is so helpful. I was beginning to panic that I would never be able to take anything again, but this has given me hope.
I am wondering whether I did the right thing in stopping everything so suddenly. But at the time, I was worried of a stroke or heart problems and thought that immediate issue was just to get the T3 level down quickly.
I am also wondering what on earth caused it in the first place, after I have been on a stable dose for just over 3 years.
Possibly my age, and the first signs of menopause I suppose?
It's never a good idea to stop taking thyroid hormones abruptly. If you suspect you are taking too much at any point you should reduce by a SMALL amount - Levo max 25mcgs or T3 max 5mcgs (never both at the same time) then retest in 6-8 weeks.
You haven't responded to some of my questions. It makes a big difference when you last took your levo/T3 before the test.
i had exactly the same issues and symptoms as you. Taking levothyroxine for 10 years -became suddenly very ill one day - hypertension which caused atrial fibrillation and ended up in A &E. I stopped taking levothyroxine and all my symptoms disappeared and for a few days I felt great, unfortunately this didn’t last, fast forward and eventually I was able to get my GP to prescribe oral solution Levothyroxine which I can better tolerate but still have many symptoms but more bearable. Prehaps you could ask your GP for a trial. I also stopped eating gluten , corn and dairy.
If you still have symptoms, include the low FODMAP diet into your already gluten, dairy free diet for a couple of weeks to see if you feel better. When I went gluten, dairy and sugar free, I felt better for a short time. I then added in the low FODMAP diet and noticed great improvements. Garlic and onions are major inflammatory foods.
Hello, I’m sorry to hear about hat horrible time you are having.
I also have autoimmune thyroid hashimotos and I totally understand how you are feeling. I have been through ALL the symptoms you describe, the head pressure (not just headaches) is one of the worst and debilitating feelings, I also had limp limbs.
I too flipped to over active at age 44, it was a couple of months after having covid. Normally if you get a virus or are experiencing extreme stress is can be a trigger.
I too came off thyroxine and was not put back on for few months, in hindsight the delay at restarting did not help. I ended up restarting when I was in the lower end of ‘normal range’ but I had terrible symptoms. So it was not normal range for me going by my history. This preempted a further terrible hashimotos crash.
Do get your bloods monitored regularly.
It’s extremely hard when you restart the thyroxine after stopping. Your hormone does go higher but it should not go beyond the limits. After a few days it should settle. When the symptoms all happened to me after restarting the thyroxine I went to A&E and I ended up staying in hospital a few days and was monitored. The symptoms should subside after a few days or so and after 2 weeks you start feeling better again ( not perfect but better) and after 6 weeks the meds have settled in. If you can tolerate it it’s worth pressing through.
You’ll need lots of drinks and a good regular food routine which helps too.
Perimenopausal age does not help. However It could be other factors that are the trigger for your flare up.
Do get all your antibody tests done. I have the marker for both blocking and stimulating thyroid antibodies now. This means it can flip over active and under active. Confusing for some doctors but a good one endocrinologist should understand and ask your GP to monitor.
Covid flipped me into thyroiditis, I struggled with it for months.
I eventually went back on a much lower dose of thyroxine. I was not on the t3. The lower dose has been good and I get bloods checked every month. Soon I will be taking the dose up in a small amount.
Keep monitoring and checking and be patient with yourself as it does take time.
Are you taking supplements at the moment? It’s very important to make sure you are not having supplements which contain iodine. Especially during a flare up. This can also cause additional havoc.
My endocrinologist recommended to avoid anything containing iodine. Not good for autoimmune thyroid people.
Lots of supplements contain it, also most oat milk too.
I felt a lot better when I stopped anything with added iodine.
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