I didn’t want to hijack Rollercoaster’s post as I’ve been on a bit of a rollercoaster myself, so starting a new topic, thanks everyone for all input and advice - this is an amazing group for support and information
I was diagnosed with Hashis in Dec 21 by my 1st endo with:
TSH 4.97 (Range 0.35 - 4.2),
FT4 1.1 ng/dl (Range 0.8 - 2)
Anti-TPO 244.9 IU/ml (Range <34)
Anti-TG 400.5 IU/ml (Range <115)
Given 75mcg generic T4, and told to come back in 3 months. I started to feel a bit better, and had some really good days, but by about 9 weeks was feeling terrible again... went back and new tests showed TSH down to 0.01, while FT4 was 1.9! Endo was on holiday, and by now I realised from my own research that she hadn't done a full thyroid panel, and had put me on B12, magnesium and selenium without checking any levels, so I went to the only other endo in town.
She seemed really good at first, I was with her for an hour and a half while she checked my whole body and med history. She said I was on far too high a dose and should have been tested after 4-6 weeks and reduced my does to 50mcg.
I also changed to Tirosint as so many of my friends have recommended it. She tested all my vitamin levels except Folate - I will ask for that to be done next week - everything was well within range, apart from low zinc and very high calcium and phosphorus, so she put me on a mega zinc suuplement, kept the mag and B12, but said stop Selenium and vit D as that might be making me retain too much calcium and phosphorus.
My next results were
TSH 0.02 μIU/mL (Range 0.30 - 4.50)
FT3 6.41 pmol/L (Range 3.00 - 6.50)
FT4 1.4 ng/dL (Range 0.8 - 1.8)
Anti-TPO 558.0 IU/ml (Range <30)
Anti-TG 189.0 IU/ml (Range < 95)
So she lowered the dose to 25mcg...
7 weeks later:
TSH 1.87 μIU/mL (Range 0.30 - 4.50)
Τ3 1.59 nmol/L (Range 0.90 - 2.80)
FT3 4.24 pmol/L (Range 3.00 - 6.50)
FT4 1.3 ng/dL (Range 0.8 - 1.8)
So she says that’s great, all good, if I have 3 months like that I will feel fine.
I still didn't feel good though, constantly tired but not sleeping at night, so she ran various other tests, including on my cortisol levels, and I asked for another TSH 4 weeks later – it was down to 0.84 μIU/mL!
So she says, ok, maybe we can lower dose even more, and eventually get you off thyroxine... so skip tabs at weekends, 25 mcg Mon to Fri....
A couple of weeks later the pains in my wrists and thumbs started, and although there is no swelling or heat, she suggests seeing a rheumatologist, which I will do, but there isn't one anywhere near me. My latest results are:
TSH: 3.53 mU/l (Range 0.3 - 4.5) 76.90%
FT3: 4.43 pmol/l (Range 3 - 6.5) 40.86%
FT4: 1.4 Ng/dl (Range 0.8 - 1.8) 60.00%
So here I am, right back up to 3.53, feeling terrible and endo telling me I’m good as it seems I can easily drop to 1 again, to take weekend meds, and come and see her next week to discuss continued symptoms and other possible causes.
Really sorry for the long post, but I don’t know where to turn, I think I might have to find an endo that will do online consultations....but first I want to be fully armed for my next appointment with this one.
In case it’s relevant, I also have TSI antibodies 2.6 U/L (Range < 2.00), my cortisol levels are consistently high (morning blood, night saliva, but normally suppressed with dexamethasone) and my DHEA-S is in range but only just - 0.280 μg/mL (Range 0.260 - 4.600)
Thanks in advance for any advice or suggestions
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Kriticat
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Ord's is thyroiditis which causes atrophy of the gland.
Most people just refer to Hashi's and forget poor Mr Ord.
Your positive TSI antibodies also suggest to me you might have Graves' Disease in tandem with the Hashi's. It isn't common (as far as I know) to have both conditions in the same body, and it makes thyroid disease harder to manage. This is probably why you have such yoyo results. Graves' Disease is usually diagnosed by testing TRAb antibodies.
For more reliable information on Grave's Disease than I can provide (I'm hypo, and never been hyper) :
A lot of people who have gone 100% gluten-free (and are absolutely ruthless about it) can lower their antibody numbers. There are disagreements amongst patients about whether this is useful for thyroid patients. It is true that a substantial number of people who do this feel better for having done it, whether or not they have coeliac disease.
If there is a possibility that you have Coeliac Disease and you want a diagnosis then you would have to continue eating gluten for at least six weeks.
A lot of people with autoimmune disorders like Hashi's can be gluten sensitive without having coeliac disease.
my cortisol levels are consistently high (morning blood, night saliva, but normally suppressed with dexamethasone) and my DHEA-S is in range but only just - 0.280 μg/mL (Range 0.260 - 4.600)
High cortisol gets mentioned quite frequently on the forum. So does low cortisol. Derangement of cortisol with thyroid disease is common.
I've never heard of dexamethasone being used to suppress cortisol before. I had high cortisol which was discovered with a saliva test. I didn't see a doctor about it. I've reduced mine with a non-prescription supplement called Holy Basil (an adaptogen). Others have done the same with a few other adaptogens - e.g. ashwaghanda, rhodiola rosea
Do you have the results of your cortisol saliva and blood tests?
Have you had your cortisol levels measured with a saliva test since starting the dexamethasone?
Dexamethasone is a steroid and the effects of them can be permanent in shutting down the adrenal glands. How long have you been on dexamethasone? You might find that your cortisol has dropped through the floor. It really needs to be monitored very, very closely. And the high levels of cortisol might not be caused by a problem with the adrenal glands - it can be caused by having low thyroid hormones. Fix the thyroid hormone levels, and the cortisol may reduce.
When cortisol is measured in blood it isn't measuring the same thing as is being measured in saliva.
You're obviously aware that T4 and T3 can be measured as Total T4 and Free T4, and Total T3 and Free T3.
The difference between Total and Free for T4 and T3 is :
Thyroid hormones are moved around the bloodstream attached to transport proteins. When the body needs to actually use those hormones the transport proteins need to be removed from the T4 and T3. These two different states are referred to as bound and unbound.
Total T4 is the sum of Bound T4 + Unbound T4.
Free T4 is just Unbound T4.
The same is true of T3.
Total T3 is the sum of Bound T3+ Unbound T3.
Free T3 is just Unbound T3.
A similar arrangement occurs with cortisol and its transport through the bloodstream.
Cortisol in the blood is the sum of Bound Cortisol + Unbound Cortisol.
Cortisol in saliva is just Unbound Cortisol.
In the case of T4, T3, and cortisol, the body can only make use of them when they are separated from their transport proteins i.e. they are unbound. Note, transport proteins aren't the same for every substance.
There are a few people who have had both blood cortisol tested first thing in the morning (when cortisol should be at its highest) and have had saliva cortisol tested throughout the day, and the results don't always agree. Blood levels can be high while saliva levels (showing the active cortisol levels) might be extremely low.
I have no goitre but many nodules on my thyroid (strangely I also have them on my lungs, but have been told that's unrelated) and am being treated for hashimoto's. The first endo said quit gluten, which I did, the second said i shouldn't have quit without a coeliac check, which I'm about to do, having had 6 lovely weeks eating bread and pasta again.
The dexameth was only a one off to check that I didn't have a tumour or pituitary issues - a cranial mri (taken for a probably unrelated dizziness issue) confirms that I don't.
The TSI was checked after the third batch of tests, when decreasing the levo didnt raise the TSH. However, the endo said the TSI level was borderline so not to worry about it, and focus on the hashimoto's for now, although Graves will make it harder to find the correct dosage. It does sound like I had a Hashi flare.
My ferritin and vit D levels are good, b12 is good on a 1000mg B12 methylcobalmine supplement (I wasn't tested before taking the supplement), and I'm going to get folate checked but have started taking a b complex in the meantime. Zinc is still low despite being on a mega dose for almost 9 months...
Until all this started all I had was a persistent cough, which is how I know about the lung nodules. I had been asking my GP about thyroid for years, but she said TSH was fine and wouldn't do other tests, I must just be stressed, menopausal, depressed blah blah blah (of course she wanted me to take statins for raised cholesterol, but I refused)
I now live in Greece, it's easy to get tested here, and I was immediately referred to an endo and got an instant diagnosis. I also buy my own meds, so don't need to persuade the endo, just want to be sure I'm not antagonising either my thyroid or the last endo in town! 🙀
Zinc is still low despite being on a mega dose for almost 9 months...
Zinc is often low in people with thyroid disease. I don't know why.
Zinc and copper have a relationship - when either of them goes up the other goes down.
If you are taking in food or supplements with copper in you may find it hard to raise your zinc.
And if you should suddenly start to absorb zinc it may have a drastic effect on copper. Having low copper is not a good situation to be in. Getting both zinc and copper to be at good levels is not easy.
You have Hashimoto’s (autoimmune thyroiditis). You thyroid is slowly being destroyed by the autoimmune disease. In the early days, this means you’ll go through phases where you’re under active, and phases where your thyroid springs back to life a bit and spews out more thyroid hormone (sometimes a little too much).
You’ll hear people here describing that as a “Hashi’s flare”. I think that’s what’s happened to you. She was probably right to make the first dosage reduction but the second was completely unnecessary because at that point you weren’t over medicated. (Have edited as originally wrote “under-medicated” which was incorrect—thanks to humanbean for alerting me!)
The flare has apparently passed, and now you’re back to being significantly under active again. I suspect your doctor doesn’t properly understand how autoimmune thyroiditis goes sometimes…
There isn’t another “possible cause”, you have Hashimoto’s thyroiditis and that’s how the disease goes. And you need to be working with a doctor who understands how to adjust your dosage accordingly. Alas, there are seemingly very few of them!
At this point, I would in your position be asking for a raise in dosage.
Reading through your post I thought it reads like classic Hashimoto's auto immune disease until I saw at the end that you have a positive and ' just ' over range TSI reading which would suggests you also have Graves AI Disease running with the Hashimoto's.
Was this TSI reading before you started any thyroid hormone replacement back in December 21 and prior to any medication and when your TSH was at 4.97 as that's odd also as with Graves the TSH is generally suppressed and stays down at around 0.01 / .04 with high, over range T3 and T4 results ?
The treatment for Graves would takes precedence over the treatment for Hashimoto's as Graves is said to be life threatening if not medicated and the treatment is with anti thyroid drugs like Carbimazole or PTU which block your own thyroid hormone production and the opposite treatment to what has been prescribed ???
So, I'm currently a little confused - what was said about this TSI result ?
Looking at your current results you look to be under medicated as with any AI thyroid disease we tend to feel better with a lower TSH - definitely under 2 and more likely under 1 and down towards the bottom of the range.
Do you have any results for inflammation, and ferritin, folate, B12 and vitamin D as when metabolism is sitting right for you, it becomes difficult for our bodies to extract essential nutrients from our food and these core strength vitamins and minerals can nosedive through the ranges compounding our health issues.
With Hashimoto's you can experience ' swings in symptoms of hyper to hypo and possibly back to hyper again ' as your thyroid comes under attack and then releases these antibodies into your blood system to sweep up the debris afterwards.
With Graves you tend to experience continuous hyperthyroid or hypothyroid symptoms as the T3 and T4 keep rising, sometimes at disproportionate levels and the AT drug is prescribed to block your own thyroid hormones from continuously rising.
You might like to read around both AI diseases while I think on, and on !!
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