Newbie- Hyperthyroidism : Hi All, Just looking... - Thyroid UK

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Newbie- Hyperthyroidism

beesting1966
beesting1966

Hi All,

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

Serum calcium 2.64 nmol/L Calcium adjusted level 2.7 nmol/L (2.20 - 2.60) Serum albumin 35 g/L (35 - 50) Serum inorganic phosphate 1.1 nmol/L (0.80-1.50)

Liver function test Serum bilirubin level 5 umol/L <21 Serum total protein 80g/L (60-80) Serum albumin 35g/L (35-50) Serum globulin 45g/L (22-43) Serum alkaline phosphates 271g/L (30-150) Serum ALT level 21 u/L <50

Serum electrolytes Serum sodium 143 nmol/L (133-146) Serum potassium 5.3 umol (3.5-5.3) Serum creatinine 55 umol/L (46-92) GFR calculated abbreviated MDRD >90 ml/min/1.73m2

Serum C reactive protein level 12 mg/L <5

Serum free T3 level 10.1 pmol/L (2.6-5.7)

Serum gamma GT level 28 u/L (9-36)

Serum TSH level <0.01 mU/L (0.30 - 4.40)

Serum free T4 level 25.5 pmol/L (9.0 - 19.1)

Erythrocyte sedimentation rate 47 mm/h (0 - 20)

Not sure if you needed all of this but did not know what to put on or leave out.

Thanks all, looking forward to hearing your advice.

Bernadette

22 Replies
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SlowDragon
SlowDragonAdministrator

You need full Thyroid testing including TPO and TG antibodies for Graves and Hashimoto's

The ONLY reliable test for Graves' disease is TSI or TRab antibodies

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Ask GP to test all relevant antibodies and to refer you to endocrinologist

Low vitamins are extremely common with autoimmune thyroid disease

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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

thyroiduk.org.uk/tuk/testin...

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.

Bernadette

Saggyuk
Saggyuk in reply to beesting1966

Hi Beesting

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?

beesting1966
beesting1966 in reply to Saggyuk

Hello Saggyuk,

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.

Saggyuk
Saggyuk in reply to beesting1966

Hi Bernadette

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:

parathyroid.com/

have a look at symptoms of high calcium and you'll understand why you feel so bad never mind with hyper thyroid too!

I do hope you get a sensible doc and they fix you fast now so you feel better :-)

beesting1966
beesting1966 in reply to Saggyuk

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.

I will ask for a scan.

Saggyuk
Saggyuk in reply to beesting1966

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 :-)

beesting1966
beesting1966 in reply to Saggyuk

Hi Saggyuk,

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

Once again thank you.

beesting1966
beesting1966 in reply to Saggyuk

Hi Saggyuk,

Finally, I have the results from the three lots of bloods I have had taken I'm hoping it will paint a bit of a picture?

Nov 2017

Serum ferritin - normal - 171 ug/L 15.00-300.00ug/L

Serum folate - normal - 5.4 ug/L >3.00ug/L

serum B12 - normal - 244ng/L 130.00-900.00ng/L

June 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 (reference ranges: <0.9 IU/L: Negative, 0.9-1.6 IU/L: Equivocal, >1.6 IU/L: Positive

Proteinase 3 antibody level - normal 2 U/ml 0.00-5.00U/ml

Myeloperoxidase antibody level - normal 1.5 U/ml 0.00-5.00U/ml

ANCA screen - normal - negative

Serum vitamin D 20 nmol/L Total 250H vitamin D<30 nmol/L is deficient

Serum calcium 2.64 nmol/L Calcium adjusted level 2.7 nmol/L (2.20 - 2.60) Serum albumin 35 g/L (35 - 50) Serum inorganic phosphate 1.1 nmol/L (0.80-1.50)

Liver function test Serum bilirubin level 5 umol/L <21 Serum total protein 80g/L (60-80) Serum albumin 35g/L (35-50) Serum globulin 45g/L (22-43) Serum alkaline phosphates 271g/L (30-150) Serum ALT level 21 u/L <50

Serum electrolytes Serum sodium 143 nmol/L (133-146) Serum potassium 5.3 umol (3.5-5.3) Serum creatinine 55 umol/L (46-92) GFR calculated abbreviated MDRD >90 ml/min/1.73m2

Serum C reactive protein level 12 mg/L <5

Serum free T3 level 10.1 pmol/L (2.6-5.7)

Serum gamma GT level 28 u/L (9-36)

Serum TSH level <0.01 mU/L (0.30 - 4.40)

Serum free T4 level 25.5 pmol/L (9.0 - 19.1)

Erythrocyte sedimentation rate 47 mm/h (0 - 20)

ENA antibody screening test - normal - negative

dsDNA binding autoantibody level - 9.2 IU/ml 0.00-20.00IU/ml

Nuclear antibody screen test - normal

Nuclear autoantib screen test - positive (titre 1.1600)

HEp-2 nuclear pattern - Homogenous

July 2017

Bone profile

Serum calcium 2.52 mmol/L

Calcium adjusted level 2.55 mmol/L 2.20-2.60mmol/L

serum total protein 81 g/L 60.00-80.00g/L

serum albumin 37 g/L 35.00-50.00g/L

serum globulin 44 g/L 0.80-1.50mmol/L

Serum inorganic phosphate 1.15 mmol/L 30.00-150.00u/L

serum alkaline phosphatase 320 u/L 30.00-150.00u/L

Full blood count - normal

Total white cell count 5.6 10.*9/L 4.00-11.0010*9/L

Haemoglobin estimation 130 g/L 115.00-165.00g/L

Platelet count 388 10*9/L 150.00-400.0010*9/L

Red blood cell count 5.31 10*12/L 3.80-5.5010*12/L

Haematocrit 0.4 L/L 0.37-0.47L/L

mean corpuscular volume(MVC) 75 fL 80.00-100.00fL

mean corpusc. haemoglobin(MCH) 24.4 pg 27.00-33.00pg

red blood cell distribut width 16.8 % 11.00-14.80%

Neutrophil count 2.7 10*9/L 1.70-7.5010*9/L

Lymphocyte count 2.2 10*9/L 1.00-4.5010*9/L

Monocyte count 0.4 10*9/L 0.20-0.8010*9/L

Eosinophil count 0.2 10*9/L 0.00-0.4010*9/L

Basophil count 0 10*9/L 0.00-0.1010*9/L

I hope you can make some sense out of this as I haven't a clue. Thank you.

Saggyuk
Saggyuk in reply to beesting1966

I'll have a closer look a little bit later but can you confirm the exact dates for the June and July tests and which date you were put on cabimazole :-)

beesting1966
beesting1966 in reply to Saggyuk

18th June and 25th July were the blood dates.

Friday 29th June was the day I started Carbimazole.

Thank you.

Hidden
Hidden in reply to beesting1966

I got Graves' disease since 2008 your B12 level very low

Saggyuk
Saggyuk in reply to beesting1966

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?

beesting1966
beesting1966 in reply to Saggyuk

Hi Saggyuk

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.

Thanks for the advice

Saggyuk
Saggyuk in reply to beesting1966

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.

Hope you feel better soon :-)

beesting1966
beesting1966 in reply to Saggyuk

Bloods 16th Aug

Liver autoantibody level

Mitochondrial antibody level Negative

Anti-LKM Antibodies Negative

Anti-Smooth Muscle Antibodies Positive

Parietal cell autoantibodies Negative

Liver Function Test

Serum bilirubin 5 umol/L <21

Serum Total protein 78 g/L (60 - 80)

Serum albumin 37 g/L (35 - 50)

Serum globulin 41 g/L (22 - 43)

Serum alkaline phosphates 334 u/L (30 -150)

Serum ALT level 22 u/L <50

Bone Profile

Serum calcium 2.39 mmol/L

Calcium adjusted level 2.42 mmol/L (2.20 - 2.60)

Serum total protein 78 g/L (60 - 80)

Serum albumin 37 g/L (35 - 50)

Serum globulin 41 g/L (22 - 43)

Serum inorganic phosphate 1.17 mmol/L (0.80 - 1.50)

Serum alkaline phosphatase 334 u/L (30 - 150)

Serum TSH level <0.01 mU/L (0.30 - 4.40)

Thyroid function Test

Serum TSH level <0.01 mU/L (0.30 - 4.40)

Serum free T4 level 10.5 pmol/L (9.0 - 19.1)

Se thyroid peroxidase AB conc >1000 U/ml <6.0

Serum electrolytes Normal

Serum sodium 141 mmol/L (133 - 146)

Serum potassium 4.7 mmol/L (3.5 - 5.3)

Serum creatinine 65 umol/L (46 - 92)

GFR calculated abbreviated MDRD 83 ml/min/1.73m2

Serum free T3 level Normal 3.5 pmol/L (2.6 - 5.7)

Serum free T4 level Normal 10.5 pmol/L (9.0 - 19.1)

Serum folate 2.9 ug/L >3.0

Serum vitamin B12 181 ng/L (130 - 900)

Serum ferritin 68 ug/L (15 - 300)

Full blood count No further action

Total white cell count 5.3 10*9/L (4.0 - 11.0)

Haemoglobin estimation 125 g/L (115 - 165)

Platelet count 326 10*9/L (150 - 400)

Red blood cell (RBC) count 5.05 10*9/L 12 (3.80 - 5.50)

Haematocrit 0.38 L/L (0.37 - 0.47)

Mean corpuscular volume (MCV) 76 fL (80 - 100)

Mean corpusc. haemoglobin (MCH) 24.7 pg (27.0 - 33.0)

Red blood cell distribut width 17.8 % (11.0 - 14.8)

Neutrophil count 2.3 10*9/L (1.7 - 7.5)

Lymphocyte count 2.2 10*9/L (1.0 - 4.5)

Monocyte count 0.4 10*9/L (0.2 - 0.8)

Eosinophil count 0.3 10*9/L (0.0 - 0.4)

Basophil count 0 10*9/L (0.0 - 0.1)

The doctor increased my Vit D to 4000 per day for 10wks even though I should her the information, also iron tablets.

She said almost certain I have Graves but others have said Hishi and I'm Hypo.....so now I don't know what I am head shot to pieces

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):

cks.nice.org.uk/hyperthyroi...

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.

patient.info/medicine/carbi...

Hi Valarian, I had all the bloods you mentioned done today includes antibodies for Graves.

No appointment yet for Endos.

Thanks for you help and the information

Saggyuk
Saggyuk in reply to beesting1966

Just so you're aware some countries consider a B12 level under 500 to be deficient!

SlowDragon
SlowDragonAdministrator in reply to beesting1966

Calcium is normally low when vitamin D is low. So they will want to check that out

Vitamin D supplements increase calcium so that's why nothing prescribed yet

Endocrinologist should probably test Parathyroid levels first

Read up about Parathyroid here

parathyroid.com

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?

beesting1966
beesting1966 in reply to rosserk

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.

Thank you for this bit of information.

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