I was diagnosed with Graves in 2007 and was put on Carbimozole for 10years,non-stop.Found out years later,according to the manufacturers website,the longest one can be on the drug is 18mths.
The dosages fluctuated during those years and my body went from 80kg to 126kg.My face and neck went from slim to puffy/watery.The treatment caused this along with other hypothyroid symptoms.
I was livid with them and seeked help from a hemeopathic practitioner,who restored my TSH levels back to the normal range.Even with that,I was still displaying this symptom til this day.
For the past 5 years,I have regained my energy levels,hitting the gym hard,coupled with HIIT training,on a raw vegetable(if possible) and fruit diet,intermittent fasting(1 meal a day or 2 if I am truly hungry),stress reduced through breathing exercises and gotten rid of the clutter in my life,toxic people included.I have the same energy levels I had when I was in my 20's(I'm 48).I feel vibrant and full of life,plus my weight has dropped from 126kg to 110kg then it stalled.Must be the because of my thyroid.But still,my face and neck have not changed.My clothes are loose but I can't seem to get rid of the excess water from my face.
From my understanding,NDT helps those with hypothyroidism reduce the swelling but I am hyperthyroid with hypothyroid symptoms.I just want to get rid of this water retention because it has destroyed my confidence,self-esteem and peace of mind.It has left my skin dull,lifeless,coarse and dry/wrinkly.
I am hoping that you can help me out here and I wish you a great day.
I can't really tell you about TRAB or TSI antibodies because the doctor orders these tests and I had no idea what it meant at the time.I was diagnosed with Graves when I experienced dizzy spells,weight loss etc,and my mom told me to have it checkedHad my blood tested and it came back positive.So I was referred to a specialist.
What doses of carbimazole were you taking, how often was it adjusted? Are you currently taking NDT or Levothyroxine?
The 18mth carbimazole “limit” isn’t an absolute. The NHS guidelines view 18 month a trial limit for Graves to go into remission. At this stage either radioactive iodine or surgery is offered (this is partly driven by cost effectiveness). Many do not accept this and remain on medication long term.
Treatment with carbimazole may not have been the direct cause of your facial fluid retention. The effect it was having on your thyroid levels may be the cause. Have you ruled out other health conditions allergies & nutritional deficiencies?
Which homeopathic remedy restored your TSH levels? The TSH might not truly reflect the actual thyroid levels (FT4 & FT3). This is especially true once you have had disfunction for 10 years as the mechanism known as HPT axis (Hypothalamic-Pituitary-Thyroid) Can become disrupted.
Graves should be confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) for Hashimoto's/autoimmune thyroiditis which ultimately causes hypothyroidism but can begin with transient hyperthyroidism.
Have you had a recent blood test? If you have online access or can obtain an actual print out of past results post on here. You need your results with ranges. TSH, FT4 and FT3. Any antibodies testing. Also important to test vitamin D, folate, ferritin and B12. These need to be optimal for thyroid health.
My carbimozole levels were adjusted from 5 then 10 & 15mg(?) then it would be calibrated again and again.How often,I can't recall.I've been off the meds for 3 years now but the doctor did confess that the treatment was to bring down the levels and would cause me to become hypo.
When he prescribed the meds,he never told me about the longterm side effects.The only tests he's ordered are T3,T4 and TSH.He's only focus is only on the TSH numbers.I have no other health issues except Graves Eye Disease nor do I have nutritional deficiencies.There was a period where my TSH levels were normal,2 years to be exact but I was still having episodes until last year when I went for a panchakarma treatment in India.Came back with all symptoms gone for good,except my bloated face and neck.As for my vitamins and minerals,it's all good.
My latest results,25th Aug 2020:
T3: 8.3 (pmol/L) Ref Range: 3.5-6
Thyroxine,Free: 18 (pmol/L) Ref Range: 8-16
TSH: <0.01 (mIU/L) Ref Range: 0.45-4.50
He hasn't performed a TSI Antibody test in a long time or any other testing for that matter.Just focused on that TSH levels.
Dose adjustment is common, I am tested 6 weekly which is standard. 15mg is a moderate dose 5mg is a low dose. Many start on much higher.
I’m aware carbimazole can have side affects ranging from rashes to serious affect on white cell count which can occur at any stage when taking the medication, but what side effects has long term medication caused you?
The aim of carbimazole Is to take the lowest dose to get your levels into range. Taking too much causes you to be (medicated) hypothyroid. Focusing on the TSH is wrong approach and may have meant you were either on too high a dose making you under active, or you may have remained hyper for a long time.
Do you see a specialist with regards to you Thyroid Eye Disease?
Last month results show your TSH is suppressed and your FT4 & 3 are above range. What treatment has your doctor recommended to bring those levels into a safe range?
A positive TSI Antibody testing confirms Graves and does not routinely need to be repeated. Sometimes a repeat test is preformed to see if the levels are low enough to trial a medication stop, but know much is know about how to lower / treat them.
My endo is awful,I know.His attention is on TSH and his course of action is to treat me with RAI whenever I see him.I'm begining to think that they get some monetary award for customers who sign up(It's in my head,I know).
The long terms side effects was a higher estrogen count as testosterone plummetted,bawling at ads,movies,songs,pictured of animals,weight gain,hair thinning,tantrums,facial edema,cold,orange peel texture on my face etc.I'm taking DIM and Calcium D-Glucarate for estrogen dominance and it helped a lot.
My TED is good.I'm taking a Sodium Selenite solution which helped relieve the eye pressure.It has even retracted slightly.Just waiting for Tepezza to hit my shores.
I think many of those symptoms may be related to your Graves, fluctuating / high (and possibly low) thyroid levels. I have not heard of long term carbimazole affecting testosterone & estrogen but thyroid can impact this too. You could start a new post regard this issue specifically. Has this aspect been fully investigated by your doctor as it may be a separate issue complicated by your thyroid issues.
If carbimazole is not to blame would you resume it? There is also an alternative anti-thyroid called PTU. Your levels are high and this has risks long term too. What has your doctor suggested apart from RAI? There is also the option of surgery, has this every been offered?
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