Just diagnosed with mild hyperthyroidism. Possible cause Graves Disease - having uptake scan to rule out nodules. I have suppressed TSH - High T3 and T4 and tested positive for TG and TPO antibodies. I have gained a lot of weight (12Kg) before being diagnosed. I have now been prescribed 10mg Cabrimazole. I am terrified I will gain further weight.
Anyone else on here gain weight with an overactive thyroid and did you also gain weight on treatment.
Would also love to hear how people managed to avoid weight gain with treatment.
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Chill71
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To be honest, that doesn't actually sound like Graves. That sounds like the 'hyper' phase of Hashi's - Autoimmune Thyroiditis. TgAB and TPOab are the antibodies for Hashi's, not Graves. Personally, I wouldn't take the antithyroid drugs until my Graves antibodies had been tested: TRAB or TSI. I wouldn't take them at all if they're calling it 'mild' hyperthyroidism - whatever that is.
Do you have the actual numbers for all those tests: results and ranges? If so, post them here and let's have a look.
I agree with grey goose. Those results Lok like hasimotos or autoimmune thyroiditis and not Graves. Graves ft4 results are more commonly at least in 40s for example. Plus the antibody tests point to hypo not hyper.
As Lalatoot said, those results give no reason to suspect Graves. Your Frees are only slightly over-range. But, I expect, these knowledgeable gentlemen were only looking at the TSH, and getting their daily exercise by jumping to conclusions!
Pretty certain you have Hashi's. And carbi is not the right treatment for it. You will go very hypo very quickly if you take that.
However, this is a gross over-simplification of the reality.
Hypothyroid patients tend to gain weight but some of that weight gain might well be retention of water due to oedema (myxoedema). At the same time, they might well lose muscle mass. (Loss of muscle mass can be serious, after all, the heart is mostly muscle.) Many will gain weight, but some will lose weight.
Hyperthyroid patients tend to lose weight due to higher metabolic rates. But at the same time, some have increased appetite. Many will lose weight, but some will gain weight.
It is all very well for me to sit here and spout about the issue, it isn't easy.
But, if you can, try first to concentrate of getting the thyroid hormone issues resolved. Once they have been - or at least you are well on the way - then move your focus of concern.
No - I am NOT convinced you should take carbimazole at all.
If you do take it, and your own thyroid hormone production ceases or reduces substantially (which is the aim), I would expect you to become hypothyroid quite quickly.
I had diagnosis of a large solitary hyper functioning or hot / toxic nodule. It causes continuous hyper which isn’t positive for autoimmune. By the time I was diagnosed my TSH was undetectable, FT4 just over range & FT3 almost 2x the normal level. Graves sufferers typically have excessively high levels eg 3 or 4x normal range spiking very suddenly.
I now know from looking through historical records I’d had suppressed TSH midrange FT4 & slightly above range FT3 over 4 years before.
So its likely my hyper levels were very slowly rising all that time and yes I did gain weight. My theory is this it was due to an out of control appetite, zero energy & motivation which developed so gradually no one included me had noticed.
I had an thyroid ultrasound to detect the nodule & a further thyroid uptake scan which shows the function of the thyroid. This confirmed the nodule I had was hyper functioning. Do you know if you have either an ultrasound scan or uptake scan is planned for you?
Your results & antibodies & indicate autoimmune thyroiditis
TRab 1.73 (<1.75) negative. technically below positive limit although nearing the limit.
TGab 4.56 (< 4.11) just above positive limit
TPOab 10.3 (0-5.61) clearly above positive limit.
10mg is an low starting dose for carbimazole but if your levels trend down naturally carbimazole will drive them down very fast. I think your doctors might be reacting to the TSH. Carbimazole reduces reduction of new hormone the existing levels once used by the body need replacing.
I would seek a repeat test sooner to re-check your levels.
Thank you PurpleNails - I think you sound exactly like me. In 2020 my appetite was like a bottomless pit. I could not satisfy my hunger. The weight crept up and up and while I was really unhappy about I had no motivation to deal with it. The Consultant I attended on Friday has ordered an uptake scan to be done before I see her again in early October. I had an ultrasound which showed mild inflammation with the radiographer commenting that it may be mild thyroiditis.,
My bloods in February and March showed low TSH initial with everything else in normal range. The results posted above were from my bloods in July. My consultant felt this wasn’t thyroiditis because the issue with TSH has been recurrent for 5 months.
The ultrasound scans are usually quite accurate at detecting autoimmune damage. Autoimmune thyroiditis is the term which doctors in UK use. Patients refer to it as Hashimotos. I suggest you contact the department which undertook the scan and ask for a copy of the report. Usually the specialist reviews the image after the scan and submits a report about the findings to who ever referred you. Usually it’s a concise summary but it can sometimes contain details which are not discussed during appointments. Do the same when you have your thyroid radio iodine uptake scan.
I can tell you what you might expect during the scan. This is a specialised scan pertechnetate, is usually performed in nuclear medicine department.
Different Hospitals have different methods from what I learned and you should get a letter specifying their method. ie if you will have a injection or some have a drink, the waiting times can vary too.
I had injection & I do have difficult veins do took a few attempts, same as when I have a blood test. I set an alarm off as I went out door.
I didn’t have to alter my medication prior to scan. I was forewarned I would have to remove all jewellery & as I’m under 50 I has to sign a form confirming I wasn’t pregnant.
I took a big bottle of water and drank while waiting.
They put stickers at certain points around the neck then had me lie down on what was an was extremely narrow place & I’m not narrow, so I had nowhere to rest my arms. I tried to rest them on my stomach, but when they adjusted a scan, which was like a large overhead screen, I had to move my hands down, so this was the most uncomfortable bit. I looked at the edge of the overhead “screen” as it comes quite close and I would have felt a bit claustrophobic otherwise.
I was alone during scan, in a large, cool, dimly lit room, while a group of people was in a separate glassed off area. So no opportunity to ask questions. I did glimpse my image and I knew what it indicated from learning about distinct patterns. I got the report confirming findings later on.
I had to avoid close contact for 24 hours. All straight forward & I had no side affects whatsoever.
Hi SlowDragon I had 18 bottles of blood drawn - all the tests you mentioned were done. All were spot on. My GP commented my genetics were impressive. My cholesterol is 3. I don’t have Coeliac disease, Diabetes.
The only other marker was my ESR was high. My GP said this was a sign of inflammation.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is a good quality option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
No I am in Ireland. I have decided to have the uptake scan and get my bloods done at the end of August and again end of September. I am not going to take the treatment just yet but may take some vitamins - Iron - B12 - Vitamin D along with a gluten free diet. I make request a referral to a cardiologist to check everything is ok. Hopefully by the time I see the endocrinologist again in early October there will be a clearer picture of what this might be.
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Yes I have read that. I am considering a gluten free diet. I have read that a grain free would also help but being vegetarian I think that would be to restricted for me.
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