As per usual this has turned into a bit of a splurge, but wanted to try and give a full picture as I am interested to hear from anyone who has experienced similar.
Diagnosed with Hashimoto's in January of this year. Since late summer have been on 75mcg of levo daily. Last blood test 21st Oct:
Serum Free T3 3.9pmol/L [range 3.9-6.8],
TSH 0.12mU/L [0.3-5], and
T4 16.3pmol/L [11-23]
Through the Autumn and at the time I had this test was feeling a lot better but three weeks ago started to feel unwell again and things are still spiralling downwards.
Feeling unwell, I started to dig around for information and came across the following in a Mary Shomon article:
"Some patients who have the autoimmune condition known as Hashimoto's thyroiditis are diagnosed during a period when they are hypothyroid. But in a thyroid that is failing due to autoimmune disease, the thyroid can frequently sputter into overdrive, then back into underactivity, and into overdrive again, as it "burns itself out" over time. You can, therefore, experience periods of overactivity - hyperthyroidism - even while your thyroid is underactive over time and generally on its way to burning itself out. So, you can experience hypothyroidism symptoms, but periodically have hyperthyroidism symptoms that also appear."
I always just assumed with Hashimoto's you were Hypothyroid........end of story....
I finally took myself off to the doctors this morning and just said that I thought I needed to have a blood test because I suspected my dose of levo wasn't right. I didn't mention anything about my reading or being HYPER. When I told him my symptoms the doctor immediately said that it sounds like my dose is too high.
Symptoms:
1) Headaches that last between 2-4 days. Painkillers don't help. When I have one of these headaches I also feel what I would describe as hypoglycaemic. Sort of jittery and I need to keep eating. I NEVER MISS A MEAL, and have a super healthy diet but when I am having one of these episodes I might eat might usual bowl of porridge for breakfast but then an hour or two later feel jittery and need to eat again........ and so on throughout the day. . Eating soothes my symptoms but not for long. In addition, thinking feels like just too much trouble during one of these episodes (I wonder if this is the "brain fog" that I see in other people's posts)- I really struggle through my working day when I am like this and might often come straight home to bed. When it is really bad, I just shut down and have to lie down in a darkened room.
2) Insomnia - dropping off quickly enough, but waking in the early hours and not being able to get back to sleep. Despite the lack of sleep not "tired", more "wired".
3) Feeling "washed out" - like I am going down with something. I look very pale and washed out. Could be just the lack of sleep!
4) Heart palpitations. Not that frequent but, for example, last time I had one of my headaches (last week) it coincided with some noticeable palpitations (quite dramatic actually, but I felt so ill I just lay there and thought "whatever"!). Not a racing heart though. (Doctor took my pulse this morning and said it was on the lower end of normal.)
As things currently stand have a blood test booked for 3rd Jan, am going to continue on my 75mcg until then.
Additional info that may be relevant
1) I was also diagnosed with osteoporosis at the same time as the Hashimoto's. (That's Hyperthyroid isn't it)
2) Although I have a healthy appetite and consume extra-large amounts during my headache episodes I am thin (........... and for that I count my lucky stars!)
Any thoughts/observations/shared experiences would be much appreciated.
Would be particularly interested from anyone who has the weird headache/jittery/eating episodes or anyone who has any sleep tips.
If you have persevered through to this point ................THANK YOU!
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MacG
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I was hyper-hypo yoyo-ing prior to thyroiditis diagnosis & partial thyroidectomy because the nodule was big. Was assured all of my symptoms were unlikely to be thyroid related though. Funny how they magically went away when completion thyroidectomy was done 3 months later *face palm*.
Thanks for getting beck to me Clutter. Can I ask, did you have any sleep problems that were then resolved? I really do think that my sleep issues have a physical basis and am hoping that if I can get my thyroid/blood issues sorted/balanced that my sleep will sort itself out.
Sorting outstanding health issues and good sleep hygiene can only help resolve health issues.
I'm also bipolar and have never really practised good sleep hygiene, skimping on sleep when mood was high and retreating into sleep when it was low.
In my first year after surgery there were periods when i didnt sleep for 3/4 nights. As you can imagine this made me feel desperately ill and wasnt good for managing the bipolar.
GP prescribed 7 x sleepers per month (important to avoid dependency and addiction) and i found this very beneficial. I havent needed to take them in a while, so I would say my sleepless issues are resolved, whilst admitting i still need to work on my sleep hygiene ie regular lights out, resting if unable to sleep and regular rising and not sleeping in.
Its very difficult to regulate sleep when your hormones are rampaging up and down, but it will happen as your hormones balance out if you help it along too
Thanks for getting back to me Clutter. - much appreciated. I think I am pretty good with the whole sleep hygiene thing, and have been experimenting with "natural" sleep remedies (eg. Valerian), but no appreciable improvements.
Your symptoms could be any number of things, you should ask them to test all the usual suspects - adrenals, diabetes, B12, folate, ferritin, vit D - as well as retesting your thyroid.
Thanks for getting to back to me Hampster1. Did have adrenals tested 18 months ago and at that stage showed pre-adrenal fatigue.. Have been following through with recommendations that Genova Diagnostics sent back re. lifestyle/diet. Maybe should get them re-tested. I'm nervous about taking DHEA or Adrenal support.
I've just realised you had another question a few months ago about low white blood count, and B12 def / PA came up in that answer. You said that you had a family history of this and you were being tested. Whatever happened with those results? Do you have a copy?
Gosh, what a good memory you've got! Yes I did have the test in July and the result was 568ng/L (range 172-1162). So that was pretty healthy.
I just have this gut instinct that all of these conditions that I am receiving treatment for - osteoporosis, hypothyroidism, neutropenia have a single root cause. They are all being treated very separately by the NHS.......... and the never the twain shall meet........!! but it just seems too coincidental. The root cause is quite probably the thyroid, but then the hypo that I have been diagnosed with doesn't explain the osteoporosis. But if I have been cycling between hyper and hypo that would perhaps explain it.
I could go round and round in circles, I just feel like there is a piece of the jigsaw that is missing, and if I could find it I'd see a more lasting and robust improvement.
I know it is water under the bridge now, but I was chatting with my sister the other day, who has type 1 diabetes and epilepsy. Mum had meningitis in her late teens and then she had us in her early twenties and maybe her system wasn't what it should have been when she had us. It's not my missing piece of jigsaw though!
No, not much one can do as you can go up and down within a day. A private specialist explained it to me. He said it is to do with the way t3 peaks then drops after every dose. This is why i take ndt in a split dose. The answer is probably to split it further, say 4 small doses throughout the day but i have trouble remembering my second dose at 1.30 as i get so engrossed in work. I set an alarm which irritates the hell out of everyone.
Thanks for getting back to me Blue Daffodil. I don't so much notice peaks and troughs within a day, but what you say about taking a split dose is interesting. As I say, I seem to have been going along OK for a couple of months............ two steps forward, then out of the blue one step back.
It is normal that in finding your optimal dose, you try a dose for 6 - 8 weeks, get tested. Then up the dose again if necessary and in 6-8 weeks, get tested. NHS gps are so lazy, most will not test after again after the first test comes back in range. It is normal for it to rise again, so it must be tested until the ranges stay more or less stable for several months.
Thanks Blue Daffodil. Have a test booked now for early Jan. Wouldn't it be great if there was a machine that we could use to test our own thyroxine levels a bit like diabetics have to test their blood sugar levels. Maybe it would be too complicated for TSH, T4, T3 tests, but I wouldn't mind paying to have something like that and just think of the money it would save the NHS, not to mention the improvement in our quality of life. The closest blood test I was offered yesterday was 3rd Jan, which means I am sort of left hanging in the air over the Christmas/New Year break. Not feeling very festive....bah humbug!
I had Graves, Hashis and Hashitoxicosis and I would say hyper symptoms can be for all sorts of reasons. Truly hyper people feel like calling an ambulance, it's very scary and from your results you are HYPO. However inflammation in your thyroid can be driving your symptoms despite your blood results. Low iron especially, low cortisol, and various low vits and minerals and being HYPO can, weirdly, mimic being HYPER. It's very confusing. What's your temperature? That will tell us you where you are - pulse can be due to all sorts of other things, partic the iron issue. Have you had an iron panel?
Also I believe some hashis patients find they control their disease better with NDT not synthetic. stopthethyroidmadness.com/h...
Thank you so much for this Rebecca. Don't think I have any inflammation in my thyroid as yesterday my GP had a really good look and felt it and said everything looked fine. Am also seeing a haematologist and Nov. blood results iron/ferritin-wise were very good - I have the print-out in front of me. (I have watched these steadily improve over the last year, and take two iron tablets a day, which I am able to tolerate.) My new GP did a raft of blood tests over the summer for various vits. I am also currently taking daily D3 as part of my osteoporosis meds.
Have just read the tpauk link that you mention and that raises some very interesting points that I want to investigate.
I do have a copy of Stop the Thyroid Madness, which I read a while ago, but as often happens, your response has prompted me to think that I'll re-visit it.
There is such a lot to get your head around in the initial stages isn't there and I think that I was undiagnosed for a number of years (possibly up to 13 years), so earlier this year everything was quite seriously out of kilter.
Two things that I keep returning to:
1) Is the osteoporosis linked. I was truly shocked when I was told I had this (despite the fact that I was breaking bones!) as I have a good diet (and do enjoy dairy) and enjoy an active lifestyle. I know about the link between osteoporosis and HYPER but struggle to find anything on a link with HYPO.
2) Am also trying to get to grips with ongoing problems with my immune system - persistently low white blood cell count, which is also why I am seeing the haematologist. Once again am convinced that there is some sort of link. As far as the NHS is concerned I have been told that it is just something that I have to live with and go to for my GP for antibiotics when I have infections, but I must admit am not delighted by this. Am investigating ways to help that - eg. probiotics.
It could well be that my latest set back is caused by the immune-system problem (i.e., I have picked something up which I am not fighting off very well), but it doesn't feel like that, and I thought I would investigate the HYPER/HYPO angle first.
It definitely is possible to have periods of increased thyroid function with Hashimoto's, flip flopping in function as it dwindles, though I guess most people are just simply underactive making it unusual. I know that I had no idea it could happen until it happened suddenly to me last year, and then I believe I've had it happen very recently in November though didn't get bloodtests at the time so not 100% sure but certainly seems the most likely explanation. This time I had the advantage of being on T3 so I could drop my dose down relatively quickly in response to it and so ended up feeling quite well for about a month as the combination of lower T3 dose and my own body seemed to get levels just right. Didn't last unfortunately.
I think technically you aren't hyperthyroid during those periods so much as over replaced then with the thyroid hormone treatment becoming too much and dosage changes potentially needed but the effect is the same, hyperthyroid/thyrotoxicosis symptoms potentially. Of course with the symptoms of hyper and hypo often being so similar it can be a little hard to be sure which way things are going without getting a look at bloodtests for some more guidance.
I see you are a little worried about osteo pointing to your GP being right about it being more hyper, but I'd say see what your bloodtests are like. Certainly the ones form October don't look hyper. TSH is a bit low but T3 is only just in range at the low end and T4 is bang in the middle of the range (although for some people that could be too high perhaps) - most importantly were those from when you felt well?
Thanks Hansaplatz. Yes, I did feel better. Not 100%, but for me the main thing was that I wasn't getting those dreadful/jittery headaches. I went for several weeks without one and it was sheer bliss!!
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