So I have over the years, and recently, had elevated TPO antibodies, tons of hyper/hypo symptoms and blood tests that fluctuate. My TSH is often low and even out of range and occasionally my Free Ts have been out of range high. I’ve always assumed I had hashimoto’s but never been bad enough on bloods consistently to receive medication so I’ve just suffered the symptoms.
Recently I was told my TSH was undetectable and my free T4 was out of range but only just. It was 24 in a range of 10-22. The consultant tested TRAb which came back at 3 which apparently is positive and did a thyroid uptake scan that showed excess iodine uptake.
Is this conclusive of Graves? I ask because the consultant said “it’s more on the Graves side”. What does that mean?? Do I or don’t I have it? Was it never hashimoto’s? They’ve offered me 5mg of carbimazole with regular monitoring to see how I get on.
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Paolatello
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Regarding the comment that your scan showed excess uptake - Usually uptake scans are pretty conclusive. As the images produce a distinct pattern for each condition. I glanced mine scan image as I was leaving and knew what it indicated as I had seen previous examples of images. My image had a obvious dense area while the rest was suppressed. (Hot nodule)
To state it looks “more like” Graves sound uncertain to me. I would obtain a copy radiographers report. They might elaborate on what the doctor has said.
How closely do they intend to monitor you? 5mg is a very low dose but you do have an undetectable TSH, over range FT4, positive Trab & a sort of supporting scan confirming you do have Graves. What about your FT3. Is this above range too? As carbimazole will reduce both.
If your levels are coming back into range, then you I don’t think starting carbimazole, even a tiny dose is required. (Doctors is freaking at low TSH) You may have both conditions. Which would account for the “Looking more like Graves” reference Hashi has caused the immune system to damage the thyroid (leading to under active) but Graves has stimulated what is remaining of the thyroid. If you have both you would me more susceptible to fluctuations so monitoring important.
For now monitoring & treat with thyroxine if levels drop again which is likely as you were previously hypo. Should the levels rise again the fluctuations will make treatment more difficult to manage on anti thyroid alone. Block and replace would be required. Higher dose of carbimazole to totally block thyroid function and replacement thyroxine.
Edit: not applicable as not previous hypo, previously had Hashimotos diagnosed.
Sorry…I mistakenly thought you had previous taken replacement thyroxine. But now I see you have hashis diagnosis but never treatable free level to medicate. If you have had continuously high levels then it would suggest either
1. Graves which typically has very high, suddenly spiking or
2. hot nodule which typically has elevated level, rising gradually over time……(generalising)
Previous post refers to nodules. I would have bet the nodules were hyper functioning (as presumably you levels haven’t been super high enough to prompt antithyroid treatment) but a uptake scan would have detected a localised uptake…. Definitely get a report copy.
What’s sort of levels of high reading did you have & for how long?
If you have a TSH, FT4, FT3 by date history, put it in you profile.
My TSH tends to sit around 0.35 up to 0.7 but often drops to below range or undetectable. My free T4 sits around 14 in a range of 12-22 but when my TSH was undetectable it was 27. My free T3 usually sits around 4.5 in a range of 3.5-6.5 but was 6.7 when my TSH dropped. My TPO are always above range and I’ve just had TRAb tested for the first time which was positive at 3. My thyroid uptake scan showed increased uptake suggestive of Graves apparently.
What confuses me is, if it’s Graves, why do my free ts tend to sit low in range? Also, when my TSH is around 0.35 why are my free ts still mid range? Shouldn’t they increase? Or do my levels switch so much that they don’t get time to react to the drops in TSH?
I’ve got terrible symptoms all the time and they’re really affecting my life now. My marriage is suffering as is my ability to be a good mum. I appear like I have postnatal depression but I don’t, it’s my thyroid making me irrational and angry!
The TSH does takes time to respond. It’s one of the reasons there’s a 6 week wait after a dose adjustment (levo & anti thyroid) and retest. Once it’s been suppressed for a time it takes longer to respond or can stay permanently low. I had suppressed TSH for nearly 5 years (wasn’t told & wasn’t retested) by the time I was diagnosed the FT3 had risen from just above range to nearly double. That when I was started on carbimazole.
My frees have now been in the lower 50% of range continuously for 18 months (initially it dropped very low and then the rose above range again (improper dose adjustments) my TSH has still never risen into range.
So it’s likely your TSH will remain discordant & you need to focus on FT4 & FT3 levels. In technical terms it’s referred to as hypothalamus–pituitary–thyroid (HPT) axis downregulation.
I am fortunate my levels have never been dangerously high or below range for any length of time, but I do know what my levels are “moving” either rising or dropping quickly I feel symptomatic whereas when I was diagnosed my symptoms had developed so gradually I hadn’t noticed. I had tachycardia, headaches, nails lifting off bed, zero energy & motivation, off scale appetite. So much so I was extremely overweight and thought I had hypothyroidism. So I can quite believe you have terrible symptoms, even if the “swings” are within range & at the time of the test everything is in range.
I think given your levels fluctuate there is an argument for B & R regimen. Carbimazole alone won’t stabilise you.
Thank you. This is so so helpful! It finally makes sense why my TSH doesn’t show the truth. My free ts are often really low in range which makes me think actually I need levothyroxine, not carbimazole
Hi looking at your previous posts I saw you had postpartum thyroid problems - after giving birth the hormone progesterone crashes giving rise to estrogen dominance and as a consequence of that autoimmune disorders such as hashimotos , the ovaries will eventually make more progesterone and everything should go back to normal
you may benefit from natural bio identical progesterone cream
You're welcome - natural progesterone cream - it must have progesterone usp in the ingredients, you can buy it on ebay I can recommend the Biovea brand as I have used it you can buy direct from Biovea online they usually have offers but any good brand you trust
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