I was diagnosed with Graves’ disease in 2012 . Was allergic to medication which hospitalised me . Took me off all medication . Just monitored me yearly . Fast forward to this last year . I just haven’t felt right at all , especially this last 4 months . Am losing weight at alarming rate . Absolutely exhausted comes in waves Tested my thyroid said THS is 2.17 thyroid Peroxidase Antibodies98.5. FreeT3 5.66.(FREE THYROXINE 18pmol/ I believe they have just changed the guideline for FreeT4 to max of 14.4 L. THYROGLOBULIN Antibodies13.1. Other bloods done Blood haematinic levels Serum vitamin B12: 505 ng/L (normal range: 130 - 800)
just gave me folic acid . Been taking for a month do not feel any better . And still losing weight I’m like a Skelton . Feel like I am going mad . Any insight or help greatly appreciated
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Missi21
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what medication were you allergic to? Carbimazole? How long were you treated?
Were you hyper & untreated afterwards? Were you not offered PTU ? Surgerical thyroidectomy? Radioactive Iodine to reduce thyroid?
TSH of 2.17 is more expected result with Hypothyroid levels? It’s in range but a healthy TSH is usually around 1.
If you have been hyper the TSH can be extremely unreliable & antibodies may be interfering with results?
Do you have range for FT4 & FT3?
The guideline hasn’t change for treatment. If the result is low or high the treatment is as previously recommended. It’s that the lab range can be set differently between machines - You need range with each result.
FT4 of 18 & Free T3 5.66 - we need range but by most ranges these could be in range.
“A max level of 14.4” - for FT4 this is very low - more like a lower limit - eg for a FT4 rang might be example of a range may be (12 - 22) mid range being healthy.
TG Antibodies 13.1 & thyroid Peroxidase Antibodies 98.5. What the range? Shown as >114 or (0 - 114) below the limit is negative - above being positive.
Positive TPO is associated with both under active autoimmune & hyper Graves.
To confirm Graves you need positive results for TRab or TSI. Were these ever tested?
hi thank you for taking the time to reply much appreciated . Yes was on carbimazole for 4 weeks then just took me off. Then left untreated .yes had trab test and latest is 98.5 . Iu/ml<35 and the following ranges in screenshot attached
yes had trab test and latest is 98.5 . Iu/ml<35 and the following ranges in screenshot attached
If you mean that test with that result in the screenshot then that is not TRAb antibody test. The TRAb test is the TSH Receptor Antibodies test which is for Graves disease. The test in your image is TPO which is Thyroid Peroxidase antibodies and when this is positive it usually indicates Hashimoto's (underactive, autoimmune hypothyroidism). Your screenshot looks like a Medichecks test and they don't test Graves antibodies in their test bundle.
Do you actually have any results for a TRAb antibody test?
I wonder if they misdiagnosed you originally, it happens quite a lot because Hashimoto's usually starts with a temporary, transient "hyper" period and many doctors mistake this for overactive thyroid when it is in fact Hashimoto's.
TGab (thyroglobulin antibodies) & TRab (TSH receptor antibodies) are different measurements.
TG can be present for both under & over active autoimmune. Trab is more accepted as positive for Graves.
Your TGab is negative but you do have positive TPO which is a sign of autoimmune activity with thyroid.
Antibodies are helpful for diagnosis but doctors are not able to control or treat this aspect.
When FT4 & FT3 are both within range as your results show. Monitoring is the appropriate action.
If FT4 & or FT3 becomes over range (hyperthyroid) then anti thyroid treatment is used to lower how much new thyroid hormone can be used - Carbimazole or PTU. Surgery or RAI radioactive iodine treatment.
If FT4 & or FT3 become too low (hypothyroid) then the replace hormone (levothyroxine) is introduced to restore to healthy level.
As you are currently in range neither thyroid treatment is of use to you.
Was vitamin D tested?
Do you take any other medication or supplements? Especially biotin? Biotin is known to skew test results?
Do you remember what time your blood test was taken? Had you eaten before & do you alway test under same conditions?
Blood test was taken in the afternoon at 3pm. My vitamin d was tested with medicheck 6 months ago and said was borderline low and not been tested since . But as previous screenshot show my folate serum is really low at 2.17 . So I am only taking prescribed 5mg folic acid for the last month . If it’s hashimotos would I not gain weight instead of losing drastically. I’m so confused with all this
It most common for hyper levels to cause weight loss & hypo level to result is weight gain, but not in every case.
I was borderline hyper for years & gained weight.
TSH drops through day so you may find if you test early eg 08.45 and fast overnight your TSH could be significantly higher. But this in itself would be unusual as then you would have high TSH with relatively high in range FT4 & FT3.
It looks as thought Graves antibodies were never confirmed at diagnosis & doctors often do not seek to confirms as they treat levels not antibodies.
I suspect your levels became low after Carbimazole treatment, but not low enough to appear to require treatment. Doctor may have not been testing fully & only looking at TSH which may have appeared been range.
If you have had remained hyper doctors would have suggested treatment.
An Autoimmune “attack” can cause a sudden rise in FT4 & FT3 levels which is temporary but the TSH alters slowly. Annual testing may not be sufficient. Retest thyroid function in 6 weeks.
You need vitamin D supplements & a B complex with mthylfolate not folic.
Missi21 ... *note .. the antibodies that are currently 98.5 are not TRab .. they are TPOab (Thyroid Peroxidase antibodies )
Raised TPOab are often found in Hashimoto's hypothyroidism and Graves Hyperthyroidism. So they don't confirm Graves disease.
TRab (Thyroid Stimulating Hormone Receptor antibodies) are the ones that are used to diagnose Graves .. (there are 'stimulating' TRab and 'blocking' TRab , and it is the stimulating ones that cause the thyroid to produce too much T4/T3 when Graves disease is active .
PurpleNails ......just to keep you up to date ... there are some NHS labs that are now using an fT4 test that has a lab range of [7.9-14 ] or thereabouts .. so in some instances it is possible that 14 is top end .. but Missi21. this range only applies to tests done on a tests platform which is calibrated using that range .... if the range used for your test was [12 -22] then 14 would be fairly low .So you always need to know the range that came with the result to interpret the result correctly.
So someone has written "Graves , TPO positive " and from the 'TPO positive' part we can be fairly sure that whoever wrote it did see a positive TPOab result on your record .. but the 'Graves' part is a bit ambiguous.. it doesn't say they had a positive TRab result on record .. it could just be a presumed diagnosis of Graves because you were hyperthyroid at the time. high T4/T3.... and had positive TPOab .
but positive TPOab are not proof of Graves. even though most Graves patients will have them .
They MAY have had a positive TRab test to confirm Graves ,, but if they did it is not recorded here.
People with high T4/T3 are occasionally mis-diagnosed with 'Graves' , when actually the cause of their high T4/T3 levels is an early stage of Hashimoto's hypothyroidism. During the early stages of autoimmune hypothyroidism the damaged thyroid can dump out a load of 'ready made' T4/T3 all at once, giving hyperthyroid symptoms. But unlike 'true' Graves , in Hashimoto's this high T4 /T3 level in the blood eventually goes down again as it get used up ... this is slightly different to what happens in true Graves where the 'stimulating' TRab cause the thyroid to keep producing too much T4/T3 and the high Levels of T4/T3 don't go down by themselves unless the Graves goes into remission ( ie. the stimulating TRab disappear).. until this happens the high T4/T3 must be controlled by antithyroid drugs (Carbimazole or PTU).. and if remission hasn't happened by the time the carbimazole is removed .. (or if carbimazole /PTU can't be used as in your case) ..or if Graves keeps coming back and a permanent solution is wanted by the patient , then the thyroid has to be removed or destroyed by radiation to stop the high T4/T3 levels.
The fact that you were ok without needing to have your thyroid removed after just 4 weeks on antithyroid drugs, does hint that you may not have had true Graves...you would *not usually expect Graves to go into remission in such a short time... you would expect the patient to need thyroid removal/ destruction soon after , if Carbimazole /PTU could not be used. (*edited later to add 'not')
So TPOab do not prove Graves .. they don't rule it out either.
The only way to know for sure about Graves is if you find a test result for TRab and it was positive .
i know it's all a bit of a head f&&k to get so much new and confusing info ..but hang in there, it will make sense eventually ....Hope my reply makes some sort of sense.. i've got to go and do something to some cabbage for dinner
hi sorry .. for delaying sorting out ya cabbage😀.thank you so much for your time and alll the information . I was under the encrinologist for 2 years at the hospital intially seeing him every 3 months . He was the one to say intiallly I was over active and it was graves . As said was allergic to cambimozale . And put me on another one one beginning with P but can’t remember the name of it . . But your going back years now . Was just trying to understand why I feel like shite . And losing so much weight I was told once you have graves you never get rid of it . You have it for life .have docs in Jan so asking for tests . Thanks again for all your help
That would have been PTU - Proplythiouracil - an alternative anti thyroid drug to Carbimazole.
Graves is an auto immune disease and said to be driven by stress and anxiety - and yes it is for life and there is no cure but I think the first question is to find out which antibodies were over range and positive at diagnosis so we have the medical evidence of what thyroid auto immune disease you are dealing with.
For your treatment with the AT drug to have been stopped after a month makes me think the antibody test came back negetive for Graves but positive for Hashimoto's which you still have, as per this latest blood test result.
I 've had RAI thyroid ablation for Graves and yes, I still have Graves Disease but now without a thyroid it's not life threatening and likely considered a chronic condition depending on how well you can manage the residual symptoms and resultant primary hypothyroidism.
So to add to the confusion....not everyone who is hyper loses weight, some manage to put it on presumably due to ravenous appetite ... and not everyone who is hypo gains weight .. some like me manage to stay the same or even lose it .... presumably because they are too knackered to be bothered cooking/ eating properly . and their stomach / appetite feels like it's gone to sleep and eating makes then feel sick.
so yes, if you did have proper graves it may become active again at some point (TRab return and act on thyroid causing it to produce too much T4./T3)... or it may not .. but your current TSH 2 ish and FT4 18[12-22] do not show any sign of that happening at the moment ... if it is in the process of coming back you would expect to see TSH falling significantly and fT4 rising over range over the next few weeks/ months .
p.s PTU is the 'other' one.. got some stupidly long name that no ne can remember how to spell... something like polythyuracil ?... polyeurathane.. lol .. i never bother trying to get it right i just write PTU and so does everyone else.
Hope your appt provides some answers .. with thyroid you somtimes have to wait and see what happens to results over a few months to know what is going on.
Graves is an autoimmune disease for which there is no cure.
Graves is said to be life threatening if not treated with AT medication so what other option was suggested a thyroidectomy or RAI thyroid ablation ?
Do you have a copy of your original blood test result as diagnosis showing a TSH, T3 ad T4 result and range and a further line of results or further letter confirming the diagnosis of Graves and detailing which antibodies that were over range and positive at diagnosis.
There are various antibodies found in the blood at diagnosis ;
for a diagnosis of Hashimoto's we see positive and over range - TPO and / or TgAB :
whilst for Graves we would see positive and over range TR ab and / or a TSI reading.
Your ferritin level is very high and needs further investigation - this over range reading could be driven by inflammation - do you have a reading there for CRP - inflammation -
hi there . I don’t have results from 12 years ago . But they said if I go hyper again I would have to have my thyroid out . I have had annual testing since and always told in range . But now I feel awful and losing so much weight etc .my doc only tested TSH and nothing else and was 2.17 mU/L( normal range 0.35-5)I had medichecks to testing as couldn’t get in with the doctor tested TRAb etc have screen shot my results
The screen shot shows you have TPO over range thyroid antibodies which is consistent with a diagnosis of Hashimoto's auto immune thyroid disease.
Hashimoto's and Graves both start off the same way with high, over range T3 and T4 levels and why it is imperative that the antibodies are run as Hashimoto's is not treated with an AT drug.
With Graves the T3 and T4 keep rising and an AT drug, like Carbimazole is needed to block own thyroid hormone production as otherwise the T3 and T4 keep rising and why Graves is considered life threatening if not treated.
With Hashimoto's the hyper phase is transient and the T3 and T4 do not keep rising and fall back down into range themselves. One's own thyroid hormone production becomes somewhat erratic causing both hyper and hypo symptoms as the gland becomes disabled from further AI attacks with the patient becoming increasingly reliant on thyroid hormone replacement.
Hi this was 6 months ago said low but within range . Been prescribed 5mg folic acid has my folate serum was 2.17 which is low . My serum ferritin which is high the doctor said won’t do anything until it hits 400 that’s the guidelines
Thanks - yes I 'm with Graves but post RAI thyroid ablation in 2005 and now primary hypothyroid and self medicating with Natural Desiccated Thyroid.
I now find i feel at my best with a ferritin at around 100 : folate at around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100 - taking Medichecks current ranges.
hi I’m not taking anything for vitamin D at all . I will ask doc to test in Jan for that too . Will look on Amazon and the link you have sent . Thank you very much for your help
5mg folic acid is a high dose. Far, far more than most need.
That dose is sometimes prescribed short-term to treat folate deficiency but should be stopped (or reduced to something like 400 micrograms a day) after something like two or three months.
Continuing when not needed can make people feel terrible.
Not clear when you started.
These a few links to the Pernicious Anaemia Society forum as they see this issue very frequently:
hi I have been taking it for nearly a month prescribed by my doctor as my folate is really low said I have to take it for 3-4 months . And to be honest . I feel worse for taking it
I haven’t taken it today . Think it I will drop it to 3 times a week . I have doctors 1st week of January and will see if he will retest if not to soon . Thank you for your help
To definitely confirm Graves’ disease you must have TSI or Trab antibodies tested
Usually that’s via endocrinologist
GP may not be able to order test
Your antibodies are high this could be Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease) - HYPOTHYROID disease
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Hashimoto's or Graves’ disease both affect the gut and frequently leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
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At my wits end now
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