Hi all, feeling pretty rotten, and somewhat confused
I’ve recently been diagnosed with Graves’ Disease:
Free T3 13.4. (3.1-6.8)
TSH <0.02 (0.3- 4.5)
TPO Ab 158
With low serum ferritin and microcitic blood cells.
I have been on carbimazol 20 mg for 5 weeks and free T3 is down to 9.2. Just seen endo and he wants to double carbimazole dose and repeat bloods in 8 weeks time. I just feel terrible on the medication and am worried I’ll swing into hypo on double the meds in 8 weeks if I’ve dropped 4 units in 5 weeks. When I questioned him about it he asked me if I didn’t want to get better!!?
Should I just stick to my original dose & request a blood test in 5 weeks or so, which is my inclination, or is there a reasonable explanation for his treatment plan that he wasn’t able to articulate to me?
Also, I was under the impression that TPO antibodies were associated with Hashi’s rather than Graves’. Is that correct? They didn’t test for TRAB. Does having TPO antibodies mean I have Hashi’s as well as, or rather than Graves’??
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Thanks for your reply trelemorele I’m confused as to why they’ve diagnosed Graves but only tested for TPO antibodies. Does that mean I have both??
I feel awful on carbimazole. No way I want to double my dose and I also don’t want to crash into hypo either, I’m totally sick of feeling all out of whack and I’d rather go gently towards balance than swing from one extreme to the other.
I’m new to all this (but have been feeling wrong for years) so was wondering if there was some medical rationale that I was missing.
Thyroid stimulating immunoglobulin (TSI) — presence of this antibody is diagnostic for Graves disease
and
Thyroid stimulating hormone receptor antibody (TRAb) — less specific than TSI
If not then I would request them to confirm Graves. If you've only had TPO antibodies tested then it's qute likely Hashimoto's and you were having a Hashi's flare at the time - where antibodies have attacked the thyroid and resulted in a load of hormone being dumped into the blood which caused the high FT3 result (no FT4?) and low TSH. That is typical of a Hashi's flare.
Thanks SeasideSusie, I haven’t been tested for either of these, and I don’t understand why? Is it something I can request on the NHS through my GP? To be honest he was a bit flummoxed when the endo requested TPO test as it wasn’t something routine. There’s no T4 result on my paperwork either.
I don't know if your GP can request those tests or if they have to be requested by an endo. Ask your GP, explain that those two tests confirm Graves but TPO antibody test alone does not. To treat you for Graves if you don't have it is rather negligent.
Was FT4 tested ? Quite often, the GP will have tested TSH and FT4, and the endo will order FT3 and antibody tests, although they may well order repeat FT4 and TSH as well.
While pretty much ALL Hash's patients are positive for TPO, so are around 60% of Graves' patients. As SeasideSusie says, to confirm Graves' you need either TSI or TRab.thyroiduk.org.uk/tuk/about_...
It isn't acceptable that your doctor attempted to brush you off with patronising comments; i cam almost see him tut-tutting and patting you on the head ! Providing the patient with an adequate explanation of their condition, prognosis and treatment plan is as much a part of his professional responsibility as diagnosing and prescribing. I would specifically ask him to explain these three things, and if he won't, complain.
The usual approach with Graves' disease is to try to bring thyroid levels within range quite quickly by prescribing a relatively high dose of anti-thyroid medication (in the UK, first choice is Carbimazole). Hyperthyroidism is pretty much always referred to a specialist; having your dose increased at this stage isn't unusual (GPs may be limited in the dose of Carbimazole they can prescribe). If you have Graves', you can expect to be on the medication for 12-18 months. This is because Graves' can't be cured, it can only go into remission, and this regime is thought to give the best chance of achieving remission.
Once you are euthyroid (within range), there are two approaches: titration, which involves gradually reducing the dose over time, and 'block and replace', which keeps the dose of carbimazole fairly high, but adds some thyroid replacement into the mix, to help you avoid becoming hypothyroid as a result of the high dose of Carbimazole, Generally thyroid clinics prefer one approach or the other, outcomes appear to be pretty much the same. It is difficult to get the dose exactly right, and people do sometimes dip below range If you do have Graves', you won't be truly hypo, and reducing the medication should bring you back within range pretty quickly.
Carbimazole is a strong drug, and some side-effects may be considered an acceptable 'quid pro quo' re achieving remission. What symptoms do you feel are down to the Carbimazole ? Bear in mind too that it isn't a quick fix, and you are probably still hyper.Anti-thyroids work by suppressing production of thyroid hormone, but it may nevertheless take a while to run through whatever excess hormone you've got stored in the body.
Yes, it’s tricky to sort out what symptoms are down to the carbimazole and which are down to being hyper. I just know I felt bad enough to go to the docs and request blood tests, then since I’ve been on the carbimazole regime I have felt generally worse: brain fog is worse, exhaustion is worse, shaking is worse. Maybe that is hyper peaking before coming down. I don’t know, I’ve been on it for 8 weeks now and I understood it takes about that long for excess Thyroid hormones to clear.
Ok, thanks, now I understand the rationale of bringing thyroid into line quickly as it gives best chance of remission. I’m still not sure it’s right for me, or whether I’ll confess! I guess it depends on my next blood test results...
My focus has been on understanding and addressing why my immune system is running amok . I’ve gone gluten-free as it appears the most obvious change I can make (even though I’m not sure if there’s a link with Graves in the same way as Hashi’s), and I’ve started on supplements as I’m a lifelong vegetarian and prone to iron deficiency.
I teach yoga and movement meditation for a living, I have stress in my life the same as everyone else (3 kids, pets, partner works away) but I’m pretty laid back & easygoing. I’m not sure what changes I can make here. Doctors all assume stress and anxiety, but it just doesn’t fit.
Even though my bloods indicate hyper, I’ve never felt hyper (hot, weight loss, active, anxious) I’ve felt worn out, sad and tearful, and foggy, achey and shakey.
I guess it’s all a learning journey and I really appreciate those of you that have have helped me in these early stages by popping up signposts for me
Typically, as you say, it takes 4-8 weeks for the excess hormones to be cleared up, but it will depend on the extent to which the dose of anti-thyroid is successful in blocking production. The symptoms you describe - tremor, fog and exhaustion - are quite typical hyper symptoms. You didn’t publish your FT4 result, but your FT3 was around double the reference range, and your dose of Carbimazole was quite a moderate one.
There are people here who suggest that a gluten-free diet may help hypers as well as hypos, but I’ve not tried it myself. One of the differences between being hyper and hypos is that being hyper can make you feel very ill very quickly. For that reason alone, it makes sense to get the thyroid under control as soon as possible. If you can manage implementing a gluten-free diet at the same time, all well and good. However, if your metabolism is working overtime, you may find that you get very hungry, and are actually burning excess calories . This might make going gluten free at this point even more difficult. Try posting with a title including Graves’ and gluten free, someone with experience of a gluten free approach will probably respond.
There appears to be a hereditary element to Graves’, as with other autoimmune diseases. The suggestion is that there are probably also associated environmental factors, but not necessarily anything you can control for example, if you trawl the internet, you may find infection and stress from major life changes highlighted. However, any connection isn’t yet clear enough for it to have been confirmed. Many of us can look back over the year or so before we were diagnosed and find something of this nature - but in all honesty, so could zillions of other people, and it’s not as if we could have avoided these situations anyway. You probably didn’t do anything to bring it on, and the official view appears to be that there isn’t much (apart from stopping smoking, if you smoke, and a standard healthy diet) from a dietary/lifestyle point of view that you can do to help your thyroid sort itself out any faster.
One thing most hypers find is that once you are hyper, stress makes things much worse, so definitely keep going with the yoga. For me, the hardest bit was the exhaustion/stress combo (eg, I’m doing a course, so when my essay was due...) I think part of this is down to what I think of as the “Duracell bunny” effect - when you’ve got energy, you seem to zoom around doing stuff until it’s used up, and then flop ! I did have a tendency to become anxious about stuff (and like you, I’m normally a relaxed person), and eventually came to he conclusion that it was because I needed to have everything sorted NOW - a bit hard to explain, but if you’ve experienced it, it does somehow fit with having a metabolism that is working overtime (back to that Duracell bunny !) I’m not sure that you can control this while thyroid levels are still high, maybe just recognise the symptoms , and find a way of dealing with them
Hi Valerian, I’m back after 10 months or so and have only just seen your lovely response. I apologise for not having replied at the time. Your Duracell bunny analogy really resonates with me, this is exactly how I’ve been coping with life for the past year. Feeling exhausted, behind, pathetic & frustrated, mustering a push to get everything done that needs to be done. Ignoring how I actually feel & just going & going & going & going & eventually collapsing. I seem to burn & crash, burn & crash, over & over. After being knocked off my feet in November (I collapsed at work) I decided to try & accept that I actually need to rest (massive doses of guilt & shame attached) and quit working temporarily until Christmas. However I've simply not yet felt able to get back up & out again yet. As you might see from my latest post I’ve been told all my levels are ‘normal’ & so my current experience of exhaustion is nothing to do with Graves. Urggh my head is a mess !!!
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