I was hospitalised earlier this week with a pulse of 130, hot flushes, shaky legs and nausea.
My blood results were T4 64.3, T3 30.7 and TSH <0.03, also ALT 238 alnd ferritin 397. I was told that it’s most likely Graves and have been prescribed 40mg Carbimozol and 40mg Propanol. Initially I was told that I would see the endocrinologist in the Cedar Centre at Guildford Royal the next week to confirm diagnosis and discuss treatment plan. However, I am now being told that I need to wait 6 weeks for the meds to start working and then see the endo.
Is this wait time normal or am I being fobbed off? I don’t want to wait so long, if I don’t need to and I’m worried that if it’s not Graves it could be something worse that might need more immediate treatment. I have private medical insurance, so if necessary I can go private.
Appreciate any thoughts or advice, I feel so lost and alone at this point, hoping it’s all just a bad dream.
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Crabb
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What a shame that whilst you were in hospital doing those tests, they didn't bother to test thyroid antibodies which would have confirmed Graves and the need for Carbimazole.
Sorry, a couple of you more knowledgeable folk posted, probably as I was composing mine. Yes, need to test for antibodies, I didn't notice they had failed to do that!
Thyroid treatment takes a long time to stabilise, 6-8 weeks is usual. I don't know about Graves but have had two increases in Thyroxine for Hashis (hypothyroid, not hyper). Each time there seemed little change for a week or two, then an improvement, then after 5-6 weeks a slight deterioration, showing I would most likely need another increase. I'm only in the second week after the last increase, but that seems to be the pattern.
There's no point in being retested until at least 6 weeks after start of treatment or any subsequent adjustment. Hope you will soon feel much better as the meds take effect, but it will most likely be a long job.
Your Dr is complying with the standard NICE guidance:
Managing overt hyperthyroidism
-Admit as a medical emergency a person with symptoms of thyroid storm.
Refer using a suspected cancer pathway (for an appointment within 2 weeks) if a person has a thyroid nodule or goitre and malignancy is suspected.
Note: thyroid function tests are usually normal in people with thyroid cancer. For more information on when to suspect malignancy, see the CKS topic on Neck lump.
-Refer all other people with overt hyperthyroidism to an endocrinologist, the urgency depending on clinical judgement, for further investigations and management.
Consider prescribing a beta-blocker and titrating the dose depending on clinical response), to provide relief of adrenergic symptoms (for example tremor or tachycardia). For more information, see the section on Beta-blockers in the Prescribing information section.
If there is uncertainty about starting a beta-blocker in primary care, seek specialist advice.
Consider seeking specialist advice about other treatment options (such as starting carbimazole) for people:
With distressing symptoms despite treatment with a beta-blocker, or if a beta-blocker is not tolerated or contraindicated.
At risk of a complication from hyperthyroidism.
Taking a drug such as amiodarone or lithium — liaison between the specialist prescribing the drug and an endocrinologist may be needed.
Carbimazole actually works very quickly - within hours. Trouble is, what it does is stop your thyroid manufacturing any more thyroid hormone. What it does not do is help with the large amount of thyroid hormone already in your body (in your thyroid, in your blood stream and in your tissues).
Carbimazole has a short half-life and to begin with should be in split doses - e.g. 20 milligram tablet morning and evening. (Long term, a lower dose of carbimazole might be sufficient and often that can be be taken once a day.)
You should now find your thyroid hormone levels are dropping but it does take weeks.
The problem is that you can suddenly go from having too much thyroid hormone to not having enough. At that point, it is important to get a blood test and check progress. The health systems love giving you an appointment based on time - not on how you are responding.
Please read very fully and carefully the Patient Information Leaflet that comes with carbimazole and take serious notice about sore throats, etc. If necessary, don't hesitate to go to your emergency medicine facility.
It would be far better to see an endocrinologist sooner - and have repeated blood tests including Thyroid Stimulating Hormone Receptor antibodies (TRAB) - than leave unchecked for six weeks or more.
Your ferritin is very high. That should not be ignored.
Finally, your thyroid hormone levels are high. It is possibly for very high levels to develop into what was known as a thyroid storm. If you think that is happening, again, go to your emergency medical facility. Don't wait. But be reassured, now you are taking the carbimazole it is much less likely to occur.
6 weeks is far too long. 40mcg per day for 6 weeks will have a dramatic effect on your levels and you may even end up overmedicated by that point. You need to see endo a.s.a.p and have bloods every couple of weeks so that your dose can be titrated down as your levels fall. Many people underestimate the speed with which Carbimazole can work and regular blood tests and monitoring is the key here. Please do not wait.
If you've got private insurance, I would do some research on local private endos with thyroid experience, then ask for a referral - that's what private insurance is for. You should also be able to get antibody testing - start with TPO, and either TRAb or TSI.
On that amount of carbimazole, and with those thyroid levels, tests every 4 weeks would be better. You don't quote the ranges, but on most scales, your thyroid levels are very high. The beta blockers will probably have a noticable effect very quickly, reducing your heart rate, palpitations and any tremor. The shaky legs and flushes will probably take longer - maybe eight weeks. As Mrs Graves and Helvella say, carbimazole begins to reduce production of new thyroid hormone straighaway, but it can't do anything about hormone that has already been produced. After that, you should feel much better, although if this is Graves', it will be quite a while before you are completely back to normal. Again, assuming this is Graves', you are likely to remain on carbimazole for 12-18 months overall, to see if the Graves' will go into remission. Once your thyroid levels are back within the reference range, they will either reduce your carbimazole gradually, to see whether your thyroid levels continue to fall/remain in range ('titration'), or else keep the carbimazole dose high, which will probably stop your natural thyroid production, which is then replaced with levothyroxine ('block and replace'). Either way, the aim will be to see whether you can come off it altogether at the end of 12-18 months. During this time, you will have regular blood tests (maybe every 6-8 weeks once your results are in range (frequency will vary according to how well your Graves' is behaving), and also regular endo appointments.
Thank you all so much for taking the time to provide me with much needed information, advice and reassurance. I feel so much better prepared to engage with this situation and happy knowing that the support exists here within this group. I will contact my GP tomorrow and keep you posted.
When I was finally diagnosed towards the end of November 2012 I saw my doctor on a Wednesday, had bloods done - including thyroid antibodies - you really do need them done if Graves is suspected - on the Thursday and I started on 20mcg carbimazole, had a date fixed for a four week blood test and an appointment made with an endocrinologist on the Friday. Three days! That part was super fast - next part was the longish wait for the carb to do its work. I couldn’t take a beta blocker to calm the racing heart as I have asthma so I just had to sit it out until that settled down.
The results of the four week blood test were sent to the endo who I hadn’t seen and I got a letter back telling me to get more carbimazole and double my dose to 40mcg daily until my endo appointment. That appointment was for the end of the following February.
The downside was that after increasing my carbimazole I had no further blood tests and by the time I saw my endo I was very hypo. My hospital treats Graves with block and replace so I started my levo the same day along with the 40 mcg carbimazole. The carb was gradually increased until I was taking 40mcg carb and 100mcg levo, by then it was November again, exactly a year after I startedtreatment and day after my endo visit I stopped both carbimazole and levothyroxine. I’m still in remissiion🤞
I’d say keep a diary with all your blood test results, all the medication you are taking and how you feel as they increase or decrease - depends on how you are being treated - plus any questions you want to ask your endo when you see him / her. I also kept any interesting articles I read about Graves.
Take an active part in your treatment and question what is happening to you and what will happen next. Don’t let your treatment be something that is ‘done’ to you.
Just to endorse fruitandnutcase’s advice about not letting your treatment be done to you. I too have Graves and had an attack in 2007 and spent two years on a rollercoaster ride of treatment, never seeing the same endo twice and given what I now realise was bad advice ie doubling and halving high Levo amounts when they should have been titred. No wonder I didn’t feel so good.
However the block and replace treatment I received did cause me to go into remission for quite a long time but I feel my thyroid is now failing and am on here often for advice on how to proceed. B&R treatment took 18 months for me.
My advice is to get educated about your condition as much as you can, Healthunlocked was/is a life saver for me, but there are other sites too and I read a few books on the subject. I was pressured to do RAI, which I resisted and was supported by my research. As fruitandnutcase says keep a diary, make sure you get copies of all your blood tests and make sure you know what is going on and what they have planned for you.
And keep coming on here, the advice is invaluable.
Thanks again for all the valuable advice. I've booked an appointment with a specialist endo in Guildford for later this week and will request the additional tests that were recommended. Will continue to learn as much as I can from this site in the meantime. Fortunately, I'm feeling much better from the meds (nausea gone and fatigue diminished) and my heart rate has finally come down to 85bpm.
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Stopped meds they don't work
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