Hi all. Mine is a bit of a long story but I’d be interested in your thoughts.
At the beginning of June, I started having palpitations, racing heart rate, breathlessness etc. Went to GP who did a whole bunch of bloods. All were normal except:
TSH <0.02 [0.3-5]
free t3 42.2 [3.1-6.8]
I was put on 40mg carbimazole and propranolol on the advice of Endocrinologist while awaiting referral (during lockdown).
3 week later was feeling worse and worse. I thought might just take a while to kick in, or be side effects. Anyway, long story short, then I turned yellow and had cholestasis/liver injury from the carbimazole so had to come off meds. Liver has now returned to normal thankfully. No meds since 28th June. Bloods at beginning of July were:
TSH <0.02
Free T3 9.9 (ref ranges as above)
Free T4 33.1 [12-22]
Now diagnosed with Graves. TrAB positive. TPO levels were high but are now coming down. Latest bloods:
TSH <0.02
Free T3 5.8 (Range as above)
Free T4 22.7 (range as above)
So, can’t take usual Meds/block/replace etc. Luckily feeling totally normal at the moment.
Endo rang today. She’s concerned if it spikes again that we can’t get it down. They’re offering total thyroidectomy. Radioactive iodine treatment is not currently available due to Covid restrictions but might become so soon. I have a 4 year old, so that comes with complications in itself.
If levels rise again before they can operate, thyroid crisis/storm is a real possibility apparently. That can be fatal so I’m told!
My brain is a little scrambled with all this. I’m trying to get my head around it all. I’m quite scared.
Written by
PurpleSailor
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There is an alternative to Carbimazole : It is called Proplthiouracil commonly called PTU :
I would contact your endocrinologist asking her to consider this " older " anti thyroid drug :
It is true that Carbimazole doesn't suit everybody so please try and get this one prescribed as there are people on here, who unable to tolerate Carbimazole were well on PTU:
OK so you have the medical evidence of TR ab positive, what was the number and ranges ?
So Graves is an autoimmune disease that tends to attack the thyroid and it is because the thyroid is such a major gland that the symptoms experienced can be said, in some people, to be life threatening.
Graves is said to be stress and anxiety driven and can be triggered by a sudden shock to the system, like a car accident or unexpected sudden death of a loved one.
Your body clock has been running very fast, you may have had symptoms of anxiety, panic, insomnia, loose bowel, eating for England but loosing weight, feeling as though you've run a marathon but you brain not switching off, and tell you to run again, though your legs are like jelly.
Your body went into overdrive, causing hyper symptoms and there's a good chance despite eating well, your metabolism was running too fast to extract nutrients from your food. It is essential to keep your core strength strong and solid and would suggest you ask for your ferritin, folate, B12 and vitamin D to be tested and post the results and ranges so we can suggest if you need to supplement these to support you through this first phase.
Thankfully your levels have dropped back down and now I'm sure you are more comfortable but understand you will feel exhausted and frazzled and your brain scrambled by all this happening so quickly.
Ideally you want to keep your thyroid, it is a major gland responsibly for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
Living without a thyroid, is not an easy quick fix, and if you need to go back on the AT drugs, you need to be put on PTU and I think this is the first arrangement you should work on having agreed with this endocrinologist.
Keeps us posted as to what happens, ask any questions you like, stuff will go over your head, don't worry, it will fall into place with time.
If you have any spare time and feel like doing a bit of research dip into the Elaine Moore Graves Disease Foundation website as I think it the most comprehensive and rounded platform for all things Graves for Graves sufferers world wide.
Elaine has Graves and had RAI back in the 1990's and finding no help with her continued symptoms started researching this poorly understood and badly treated autoimmune disease herself, and now several years later there are several books and her website where there is an open forum, similar to this amazing forum where you can ask members who have the same issues for opinion, and even of Elaine herself.
There are sections on mainstream medical treatment options, but you will also find sections on holistic and alternative options and much information on how to help reduce down these antibodies, thereby dampen down your own immune system which is causing all the problems and sending your thyroid haywire.
Your thyroid is the victim in all this, not the cause - the cause is your immune system attacking your body - and in particular your thyroid which is a major gland that you really do not want to loose,
I'm with Graves and had RAI in 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI, and hypothyroidism and I am self medicating as I am unable to receive the appropriate thyroid hormone replacement on the NHS.
I just wish I knew what I know now, back in 2005 as I certainly wouldn't have taken the first and only solution offered to me.
Thank you for your reply and further information. I asked about alternative meds but they won’t put me on PTU because of the liver toxicity - apparently that’s more likely on that than with carbimazole so I can’t go there.
To answer your questions:
TrAB level was 2.6 (ref >1 positive, 0.4-1 borderline).
Serum ferritin level 22 [15- 350]
Serum folate level 13.3 [3 - 18]
Serum vitamin B12 level 289 [200 - 960]
These are in range but obviously low end. These were taken at beginning of July when all this was happening. I’ve been trying to eat iron rich foods since then. I haven’t had vit d checked but I’m quite outdoorsy and have always deliberately delayed applying sunscreen on for first 10 mins or so to top up my vitamin d levels so I’d hope it’s ok
I'm sorry about this PTU side effect - I didn't know about that and will research a bit.
As for the vitamins and minerals as your metabolism was all over the place your body won't have reacted in what you might consider the " normal way " so yes, you do need to do some work here.
Can you ask for an Iron Infusion and if not you need a prescription as your ferritin is very low, and needs urgent attention.
I generally follow Seaside Susie hopefully she will come along and help :
I aim for a ferritin of around 100: Vitamin D around 100 : Serum B12 550 : Folate 20 ;
Rest all you can, though with a little boy probably a stupid suggestion :
P.S. From the little bit I've just read the incidence of liver damage with PTU is rare and you can be monitored while on PTU with liver scan and blood test to check for any issues.
I just feel you have been frightened into making this decision for a thyroidectomy before any proper thought has been given to wait and see, or try another AT drug and help the patient.
Yes there are side effects to all drugs, and yes there will be a very small % of patients who don't tolerate certain medication, but isn't it worth a try ?
You were only diagnosed in June and it seems too soon to make such an important decision.
I had RAI when my youngest was 4-5 years old, it wasn't difficult to manage the restrictions and it's only for a short while. Having experienced uncontrollable Graves I personally would get on with sorting it asap.
I was in remission for nearly 30 years so I know that but then it came back with a vengeance, treatment didn't work and further surgery wasn't an option so I wanted RAI and it was the best decision for me. Elaine Moore may regret it but that's her opinion, I don't regret it for one second.
No I'm 65, many relapses, heart problems, surgery, block and replace, RAI was the only thing to finally rid me of the devil. Remission was only after partial op, wouldn't have happened otherwise.
Thank for your reply. If you don’t mind, can you explain a little about living without a thyroid. In what way is it difficult? I’m trying to get all the facts to help me understand this whole situation as I don’t know anyone else who’s had it. Thanks.
Firstly, not every patient who has a thyroidectomy or RAI has difficulties. I’m sure many have no complications and quickly find a balance on replacement T4 (Levothyroxine). Well people do not need to be on here looking for help.
Sadly many do struggle and there are thousands of postings here about it and how difficult it is to get the help they need. They may not have been fully informed before proceeding with treatment and subsequently fobbed off by their doctors.
Doctors are taught that without your own thyroid, simple replacement with synthetic T4 Is all that’s required. Medics test your TSH, which In healthy individuals rises when thyroid levels are low. Once “stable” this is checked annually and if this is in range you must be well. Many find they must fight for fuller testing as the TSH might not truly reflect the actual thyroid levels (FT4 & FT3). This is especially true once you have had disfunction as the mechanism known as HPT axis (Hypothalamic-Pituitary-Thyroid) Can become disrupted. Nutrients also do not routinely get tested, without optimal nutrients your body will not convert the T4 to the active hormone T3. Many feel forced to pay privately to get full testing and fund own supply of T3 which is nearly impossible to obtain via the NHS.
Has your doctor given you a time line? Of regular repeat blood test and when surgery might be suggested. You should be monitored quite closely to see if you begin to rise again.
If you can be as informed as possible, if you do find you require surgery you can be more prepared to deal with any issues which might occur. You will also have this forum to help you along the way.
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