Just looking for some advice and things I can or need to do to alleviate the pain.
I had swollen ankles, joint pain lack of sleep, over heating and weight gain this has been going on for over a year with my doctor putting me on frusemide 20 then 40 mg
On Friday 29th June I was diagnosed with hyperthyroidism and put on Carbimazole 5mg....1 tablet 3x a day so 15mg per day.
They also think I have rheumatoid arthritis.
I don’t understand my bloods so any help would be good, I had these taken 18/06/2018
Rheumatoid factor <10.3 IU/ml (0.0 - 20.0)
Se anti-MCV antibody level 22 U/ml (0.0 - 20.0)
TSH receptor antibody level 4.3 u/L
Serum vitamin D 20 nmol/L Total 250H vitamin D<30 nmol/L is deficient
Come back with new post once you have all results and ranges
Your vitamin D is deficient. What has GP prescribed?
Also need ferritin, folate and B12 tested
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Thank you SlowDragon for your advice. I have not been given anything for the vitamin D or the raised calcium, only the Carbimizole 15mg. I have been referred to the endocrinologist have been waiting 3 weeks and no appointment as yet.
I would not take any vitamin D until further investigations have been carried out as your calcium is high and your body could be deactivating the vit D on purpose.
Your results are very complicated with a few issues and it's hard to know what's causing what. I'm glad doc has referred you as above the GP, just got to hope endo is good. Has he referred you to anyone else? I will take a closer look at some point over the next few days to see if I can give any hints at what should be looked at but just to check - are you on any other meds, did you have any other medical issues before the frusemide or diagnosed since. Why were you put on the frusemide exactly? Was it just for water retention? Do you have test results from before you were on them?
Over a year ago my ankles were swelling and aching so I went to the doctors as the swelling would not go down, no test were done I was just given frusemide and told it was water retention. This continued for months with weight gain but I was not eating anymore than usual and not using the toilet any more than usual. So off I go back to the doctors to be given a higher dose of Frusemide to no avail. I saw a different doctor who sent me for blood tests. The tests came back and I was called in to do further tests as I looked at the screen I could see my markers were all over the place I said that doesn't look right to which the philebotomist said ' they think you have rheumatoid arthritis total shock, my bloods were taken, my blood pressure never had high blood pressure was up also they gave me an ECG straight away. I left there then the same evening started to experience anxiety and palpitations, this was in November. It has taken from then to now after continually having to go to the doctors in an absolute state of depression, anxiety, tremendous pain and breathing problems and feeling like I'd been hit with a sledge hammer, to be sent for a blood test and the results I have shared to be told I have hyperthyroidism .
Referred to rheumatologist and Thyroid clinic.
Thank you, look forward to hearing from you after you take a closer look at my blood work.
Apologies, I've been so busy this week and wanted to check a few things before commenting and have a think about it
I'm not surprised you've been feeling so bad, high calcium and high levels of thyroid will make you feel awful. Calcium is the most regulated substance in our body so even a little out is not great and hyperthyroid will make you feel pants too. It's likely this has been going on for some time also and has just been missed maybe or under investigated.
Obviously, you have the issue of high calcium, hyperthyroid and liver abnormalities and inflammation. High calcium is normally caused by hyperparathyroidism which you should be fully checked for but rarely hyperthyroidism can cause high calcium and similar effect to hyperparathyroidism as it increases bone turnover. Basically it's more rare to have both hyperthyroidism and hyperparathyroidism coexisting than to have hypercalcemia as a side effect to hyperthyroidism. It is not unheard of though so needs to be looked at carefully. All the symptoms you have including elevated liver enzymes such as ALP and vit d can be caused by both so If it is being caused by the hyperthyroidism, from what I just checked you would expect to see pretty fast results in these normalising once the hyperthyroidism has been treated adequately or resolved and showing normal thyroid results- a week or two in some cases. If this is not the case, you would need full investigation for hyperparathyroidism including PTH, Ionized calcium and magnesium and I'd also want a scan of the area as thyroid and parathyroids are in the same area as well as thorough testing for the hyperthyroidism including all thyroid antibodies.
My main concern is that you've been taking frusemide - this in fact depletes calcium, potassium and sodium (yours are already all high in range or over) so you've inadvertently been treating the hypercalcemia to a degree which is probably hiding what would have been far more dangerous levels. Apparently hyperthyroidism doesn't often present with calcium levels over 3 and your's is at 2.7 with the frusemide so I'm wondering what your levels actually would have been without. This is the problem with docs given out meds willy nilly hoping you'll go away without actually determining what the problem is or doing a basic investigation meaning they are useless or can make matters worse - possibly not in your case but could have prolonged the diagnosis maybe!
Personally in regards to rheumatoid arthritis, I feel this would not be a primary concern right now. The other two issues however must be sorted fast before any damage can occur and hopefully you will feel much better in all regards and you can see what you're left with and where you're at after. Over range calcum is never good so I'd want to see fast action from the docs in regards to both these issues.
Obviously there are more complicated issues/possibilties but this is the most likely it appears so best to get these treated first. Obviously I'm not medically trained nor an expert either so just my own personal opinion
Obviously you have high levels of inflammation so any lifestyle changes ensuring you are getting everything you need in regards to food and removing toxins and avoiding high inflammatory foods might help - the highest being sugar and gluten.
A good website to see all the ins and outs of hyperparathyroidism (which is much less common than than hyperthyroid) and the effects and everything you need to know about hypercalcemia is this one:
Thank you I thought it was bad. I'm paying privately to get a full work up of my bloods. My doctor put me on proprananol this week took one felt like i was having a stroke and stopped taking it. She said it would help with the excessive sweating.
Well hopefully the carbimazole will starting working soon as it may be that you just need those and all else will normalise. I just looked and it says 4-8 weeks for full effect although you should have been seen and bloods rechecked by now as 15mg is low and used as a maintenance dose as they will give up to 40mg initially but also you may need to take levo if it has worked by now? When is this appointment with an endo? THis is what you need - a really good endo who knows about hyperthyroidism rather than a diabeties specialist etc. I would call the endo department where you've been referred to and chase them and the GP on the appointment. Minimally you need new bloods taken now to see if the meds have made any difference at all yet or maybe need a higher dose.
I'd be interested in the results you had in November or any you've had since - might be able to determine if calcium was a problem before the thyroid but depends on what they tested. Request a print off for these unless you have online access to them?
You need that endo appointment so if you're going to pay for anything privately, this is what you need most so you can get on top of the high thyroid levels and then hopefully everything else. You can ask on here in another thread if anyone knows of one local to you
I have only seen my gp, she is the one who put my on the carbimazole as reading what dose from the BMI book whilst I sat there in shock, still waiting for an Endo appointment.
I will call the doctors tomorrow to get the print out from November and the ones done last week which I don't think was much.
Also will try and contact an Endo secretary to push for an appointment. Will add all of them once I get them
Well it seems your calcium has come down since taking the carbimazole so that's really good. Liver abnormalities still present though but there's no way of knowing whether the carbimazole has even worked enough yet so just got to wait and see. I can't believe they didn't retest your thyroid on the last one to be honest at least to see if thyroid hormones going in the right direction.
Hopefully it will all sort itself out once this is managed adequately - do you have your appointment for the endo yet? I imagine this has gone on for a while so I suppose you're going to have to question whether the frusemide did anything and whether you should actually still be on them as might not be helping but maybe wait until your thyroid is stabilised. All these tests will need to be repeated once your thyroid is under control to ensure all have normalised indicating the cause being the thyroid or if not, whether further investigations should be undertaken. Ignore the Vit D as well until thyroid sorted and calcium retested to be sure but do make sure retested after in case it's not going up or are still deficient.
The blood tests from November don't tell me much to be honest as not the same tests but you are somewhat low in your vits and you're possibly even worse now where you've been hyper. Did you have any stomach issues before all this or do you eat well enough? Yes you do need some B12 as likely deficient which is dangerous - get some sublingual methylcobalamin - maybe 3000-5000 strength (maybe jarrows or sulgar brand) for a good few months. Folate not optimal too so take with a good b complex which includes folate like thorne Basic B complex - can get both from amazon. You cannot overdose with B12 as it's water soluble as you will pee the excess out so not dangerous to take unnecessarily like iron etc. Start with the B12 and the add the b complex a week later.
Your MCV and MCH in your blood count are both under range low and can indicate iron anaemia so I'd want to get my ferritin restested alongside an iron panel and the folate and B12 retested. However, these abnormalities in your blood count can also be apparent in B12 deficiency too though and your rdw is over range so your blood count is not perfectly normal. Maybe it's best to get b12 deficiency looked into first or investigated further but to be honest, I get the impression they're unlikely to do this properly at the mo or even notice and you seem like you just need to feel better so I would just take some and see if it makes a difference and look at investigating it more thoroughly later maybe if you can't get anywhere?
You can get these tests done yourself if you wish to pay for them and they're not hugely expensive so just let me know if you want me to explain how. Also have a read up on B12/Folate deficiency symptoms and see if any apply to you.
Are you sure the serum glubulin result is as you've written it in regards to the ranges?
I had a new lot of bloods taken today to look at graves also. The dr said my B12 was fine but I asked for it to be done along with all of the bloods you have mentioned.
He started me on Vit D today...Stexerol-D3. 1000IU, one to be taken twice a day for 12 weeks then reduce to one daily.
Hiya, that's good you've got them done again. You do really need to up your B12 though, the nhs ranges are hugely out of date in comparison to other countries and more recent research and your level is just too low and many are deficient at this level. Als this blood test measures all active and inactive B12 so is not a particularly great test as all it's measuring might be inactive and therefore doing zilch. As mentioned, there is no danger of excess B12 so you have not much problems to take anyway and it might make you feel hugely better.
TRAb antibodies are indicative of Graves’ disease. The carbimazole dose looks about right, but eight weeks is a long time without a new blood test, especially as your FT4 levels weren’t too far over range. I’m also a bit surprised that your GP is prescribing Carbimazole without consulting an endo.
You really need FT4, FT3 and TSH tested every 4-6 weeks, at least until your thyroid levels are within range. FT3 can remain high even when FT4 comes down, so you need both.
Do you have a date for an appointment do appointment yet ?
Here is some info you may find useful (NICE guidelines):
And here is patient info on Carbimazole, in case your GP didn’t explain it all. Read it carefully, and come back to us if there us anything you don’t understand. There are some very rare, but potentially serious side effects you need to be aware of.
Hi I noticed on your blood tests that you tested positive for anti smooth muscle antibodies. I have a similar problem and was told Anti-smooth muscle antibodies are found in autoimmune liver diseases such as primary biliary cholangitis and autoimmune hepatitis. I’m awaiting further tests. Have you had any feedback on this result?
No I haven’t been told anything like that! My go just keeps asking have I heard from Endos re appointment. I will be questioning this by phoning my gp tomorrow and will let you know the outcome.
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