I never expected to be writing this kind of post, but
Today my TSH is 83.46 mU/L [.35-5.5]
My ft4 is 4.1 pmol/L [7.86 - 14.41]
I was NOT expecting this development!
Backstory:
I was finally diagnosed earlier this year with 'subclinical' hypothyroidism, after limping along for years with plenty of symptoms. My borderline TSH went on for years and years (TSH 4/5/6 ish). I pushed hard for a diagnosis this April after my TG antibodies finally went out of range on a private test.
I've posted on here during that frustrating period, the same story as so many people, struggling for ages to get a diagnosis.
After the cautious diagnosis, my GP agreed to give me a trial of Levothyroxine, titrated up slowly and cautiously, starting at only 25mcg.
However by August I ended up overmedicated at only 75mcg, which is a pretty small dose.
So we scaled back the dose. And I stuck with 50mcg for a while, beginning to doubt whether I had really needed medicating after all. (Side note- being overmedicated feels rotten)
With this niggling doubt at the back of my mind, I actually stopped taking even the 50mcg a couple of weeks ago after a short illness. I'd had an attack of vertigo and was worried it wasn't being helped, perhaps even might have been caused by the Levothyroxine I'd argued hard for but was beginning to wonder if I'd ever really needed after all.
But, as I mentioned
Today my TSH is apparently 83, and my ft4 is 4.
It's as if my thyroid took one glance at the treatment, had a dramatic fit and then immediately went on complete strike.
I'm at a loss really.
Has anyone experienced anything similar? From years in only slightly borderline hypo, to a short and dramatic over-reaction to a very conservative medication trial, followed by a dramatic end destination of what I imagine is deemed overt and possibly severe hypothyroidism?
I can't imagine what dose I need to find a balance now. It's as if my body has a hair trigger.
This is all very weird!
Any advice, please?
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Yes. I’ve felt theres been something wrong since 2004. I remember the month! I believed my GP that they had done all tests and I was OK. Recently found out they didnt at all! Didnt know about private testing. Last few years virus after virus. Breathlessness etc. Nightmares. Bowel problems. Jan this year Shingles again. I didnt recover though GP said I was fine! Tried to start me on antidepressants for umpteenth time. Which I kept refusing. I insisted on more tests and was subclinical. Started on 25mcg. Now on 125mcg and still hypo. Just like its given up the struggle and died x
As you have Hashi's, that is the sort of thing you ought to expect. And, I doubt you were over-medicated in August, you more than likely had a Hashi's 'hyper' swing. Now, that extra hormone has been used up/excreted, and you stopped taking your thyroid hormone replacement, so you've become massively hypo. That's the way Hashi's works, I'm afraid.
Don't let your doctor start you on 25 mcg again. Insist on 50 mcg with a retest in six weeks.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
What was the numbers/ranges of the blood test you had when the doctor reduced your dose?
I think the best advice I can give you is to change your GP as yours seem to not know how to diagnose/treat patients. The aim is a TSH of 1 or lower with a FT4 and FT3 in the upper part of the ranges.
75mcg is a not a high dose and I suspect your doctor panicked if your TSH went to 1 or lower. Many are so ignorant about treating patients with hypo that they do NOT listen to the patient or take notice of symptoms and concentrate upon the TSH alone. If it goes to 1 or lower they panic as they 'assume' the patient is now hyPERthyroid which isn't possible..
It would appear that your GP knows little about treating someone who's hypo as the aim is a TSH of 1 or lower but many seem to believe that to keep it in the 'top of the range' is the right thing to do.
My B12 is high, I've been supplementing, and vitamin D is something I'm working on with high dose supplements. Ferritin is fine. I don't think these have played a significant part in my case.
When I went hyper I really was hyper.
After taking 25mcg TSH was 4.16
After raising to 50mcg TSH was 2.92
Then suddenly after raising it to 75mcg it was only 0.05. (FT4 also out of range at 17.3 [7.86 -14.41])
This was early August. At the point at which those numbers were hyper, I had no hyper symptoms so this took me by surprise.
I cut back to 50/75 alternate days. However within a couple of weeks I had really unpleasant hyper symptoms appear. Fast pulse, weak, breathless, palpitations, racing heart.
I stopped all the levo entirely until the hyper subsided over a couple of weeks.
And then I started again on 50mcg.
But by this point I was a bit concerned to have flipped so quickly from unremarkable, subclinical hypo, to quite obvious hyper at such a low dosage.
It seemed unnerving to have such acute sensitivity to small doses.
So when I had the vertigo I stopped entirely, a couple of weeks ago, early November.
But to suddenly be at a TSH of 83 now? Years of my TSH bumbling along at 4, a short lived dalliance with leveothyroxine and all of a sudden my thyroid can't cope at all on its own to this extent? Bit too weird.
I'm now beginning to think the medication actually wasn't the problem.
I wonder if I've had an episode of "hashitoxicosis" where my thyroid has dumped my entire store of hormone into my blood causing the hyper, and eventually left me very depleted in a way I've never been before.
What grey goose said, basically.
The bottom line is that my ft4 is currently at 4 and I'm not taking any levo at all, and don't really know what to do!
I actually have an endocrinologist appointment in a couple of weeks about something unrelated. I can bring all this up then, although it will be a bit of a surprise, as when I saw the clinic last year I wasn't even diagnosed as hypothyroid, let alone taking anything. So they will be unaware of any of this.
In the meantime, how worried should I be about these numbers? After years of watching my TSH like a hawk to show my GP it had gone marginally out of range, I'm not really equipped to deal with it going bonkers like this.
I've just had to persuade the receptionist I probably should have a phone chat to a gp today. Since I'm not actually taking any levo at all right now and those blood numbers are unexpected.
Apparently a doctor (not mine) had reviewed the labs yesterday and "if they'd have been worried they'd have called you. There'll probably be an appointment within a week or two to discuss it"
I spoke to my GP who was surprised to see these results. She has told me to start taking 50mcg again.
I'm seeing the endocrinologist (unrelated to thyroid) in a few days so I called to let them know what has happened and to give them the opportunity to use the appointment more productively. Usually it's a frustrating chat with a new junior doctor and blood tests.
Last year they wanted to discharge me from their list.
I spoke to one of the endocrine doctors over the phone, but he seemingly was more interested in why I'd been getting my thyroid tested in the first place (because my GP diagnosed me, obvs) than gaining an understanding of how I've gone from apparently euthyroid at the endocrine clinic this time last year (TSH >4 but we all know that is easily dismissed) to a GP subclinical hypothyroidism diagnosis, then within three months to hyPERthyroid (at 75mcg) and then to back to hyPOthyroidism, but this time a more extreme hypothyroidism with TSH 83.
He wasn't interested in considering thyrotoxicosis as the theoretical cause of my dramatic swing to extremely hyper followed by extremely hypo. He decided overmedication of 75mcg was the definite cause of the 0.05 TSH result, and he had no explanation of why I didn't then subsequently return to my baseline of TSH 5ish but instead became so overtly hypothyroid. I suggested in future perhaps I should avoid any dose above 50mcg since he's so sure 75mcg is far too high a dose for me. At which point he mumbled something about my thyroid getting tired because it had help from levo and possibly things might be different this attempt to titrate dosages. He pretty much said treating subclinical hypo caused it to become overt hypo.
Sometimes it feels like doctors are so cheesed off that a patient was right that they'll argue the most unlikely explanations rather than concur with them.
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