Hi to you all, I joined few weeks ago as I was diagnosed with hyperthyroid. I have been getting a lot of information through reading questions and answers here. I am very grateful that I found this group.
I would like to share my story now and ask for your valued experiences.
I was a super speedy busy bee through the winter and the spring. I like being busy so I did not mind until I started to feel a bit dizzy and friends comment I have lost weight. I thought this was because I was active. Until I went to visit my mum in May and I did not put on weight, which is not possible while eating her delicious food in great quantities. Measured my heart beat with her and it was in the 90s. Came back home and dropped. I could not get out of bed. Slight dry cough, voice was going. Breathless, could not stay up for 5 min. I had excessive joint and muscle pains. Nausea and headaches. Night sweats that I thought are to do with peri menopause. I will be 51 this month and not bleeding for 8 months. Had an emergency blood tests.
This are my blood results from 6th of June
TSH 0.01 mU/L (0.30-4.20 mU/L)
fT4 55.1 pmol/L (12-22 pmol/L)
B12 333 ng/L (160-925 ng/L)
Folate 20 ug/L (2.90 - 50 ug/L)
Iron 15.2 umol/L (11-36 umol/L)
TIBC 51.7 umol/L (53-85 umol/L)
Ferritin 140 ug/L (30- 200 ug/L)
Serum C reactive protein 1 mg/L (0-5 mg/L)
Serum inorganic phosphate is elevated too 1.76 mol/L (0.87-1.45 mol/L)
Liver serum ALT level up 45U/L (10-35 U/L)
Serum creatinine low 45 umol/L ( 49- 92 umol/L)
On the 19th of June I started 30 mg daily carbimazole and up to 60 mg propanolol.
I am out of bed and getting out and about this past 10 days. Still skinny, but eating well and healthy, 4th week on autoimmune protocol.
I did another blood test on the 4th of July asking GP for antibodies test and fT3.
this is 2 weeks in on carbimazole 30mg result
THS is 0.01
fT4 from 55.1 to now 42 pmol/L
fT3 11.9 pmol/L (3.1 -6.8 pmol/L)
Thyroid peroxidase Abs 130 IU/ml (0-01 IU/ml)
Thyroglobulin Abs 34.4 IU/ml
Thyroglobulin 301 ug/L (0.00 - 010 ig/L)
I need my hand held through this...
Endo appointment on 28th if September!
They are basically instructing my GP what to do.
My GP is very caring. Grateful for that. She calls me once a week to check with me.
Because of this group I can ask for what I need. I have not tested vit D yet, but I doubt its low as since covid I have been supplementing D3, zinc and selenium daily with some stops.
My GP is due to call me again on Monday to discuss the dosages of carbimazole.
Endo instructed her 30 mg carbi for 3 weeks ... today is last day of 3rd week.
After that I should be on 20mg, but is this good movement of fT4 from 55.1 to 42 in 2 weeks?
In any of your experiences how should carbimazole be managed?
I don't want to go on the pendulum hyper-hypo.
So this is Grave's?
Do I supplement B12? Does anyone have experience with B12 shots?
Iron looks low too. What is the best way to up the iron?
TIBC ? what is that , as its low..
Is folate ok on 20?
Thank you
Written by
LilyBloom
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Hi LilyBloom. you won't know for certain if it's Graves causing your high fT4 / fT3 levels until somebody ( probably endo) does the specific antibody test for Graves.
The Thyroid peroxidase antibodies (TPOab) and Thyroglubulin antibodies (TGab) antibodies you have had tested by GP are present in both of the autoimmune thyroid diseases ( Hashimoto's and Graves) . and Hashimoto's (hypothyroidism) can sometimes start with transient hyperthyroid phase which can look very much like Graves , but isn't.
The fact that your weight loss has been going on for quite a few months does suggest it's Graves , but your fT4 at diagnosis was not as high as it can often get with Graves , so that suggests early stage Hashimoto's is still a possibility .
Most people with Hashimoto's have over range TPOab (and /or TGab ) , but a fairly large % of people with Graves have them too.
The antibodies that actually cause Graves disease are called:
Thank you very much tattybogle for your time and sharing what you know. As it takes such a long time to see Endo, and my GP is quite surprised about this too, I think she will do everything to bring more clarity to my situation. I will ask for those tests
Hi Lily, I was diagnosed Graves and TED 6 years ago. Presently feel well on Block and Replace . I didn't find this group until 2 years after diagnosis. An Endo who was a diabetes specialist and knew little about Graves allowed me to go very hypo causing TED. You are fortunate that you have the chance to go into your first Endo Appt. as an informed patient. Start keeping a note of blood test results / drug dose / symptoms. After over 30 blood tests I have a clear picture of where I need to be to feel well. I started on 20mg C and although titrated down to 5mg I was hypo within 3 months. I would question if you need propranolol. Carbimazole on it's own will often bring down heart rate. Make sure you have a TRAb /TSI test. As well as giving a diagnosis of Graves it is useful later to check on your journey towards remission. Read up on Block and Replace in case you do go hypo. Don't come off Carbimazole too early. There is no rush and people on the forum can give you references to papers saying you have more chance of remission the longer you stay on Carbimazole. Hopefully you will see a good Endo but be prepared and ready to fight your corner if like me they specialise in diabetes.
Thank you for sharing your hard earned experience. I am sorry that you did not get the proper attention from your endocrinologist. Outrageous he was a diabetic specialist. I will definitely fight my corner. Glad to know you find block and replace good therapy. For now I am good on carbimazole. I am going to reduce and leave propranolol, as the carbimazole started to work. I have been on crabimazole for 3 weeks now and my heart rate is getting better. I will get the tests to find out if I have graves. Great idea to keep record of all blood tests, symptoms and dosages before my endo appointment. Were you only 3 months on carbimazole when you got hypo? May I ask what were your TSH and T4 readings at the beginning of your journey?
At diagnosis TSH negligible fT4 29 (9-21). Pulse over 100. Unfortunately the important fT3 wasn't measured. After 4 wks. on 20mg. C TSH 1.25 fT4 14.2. 3 months later I was reduced to 15mg C as my TSH was 30 and fT4 was 14. It was dropped to 10 mg then 5 mg over the next couple of months as TSH rose to 39 and fT4 was down at 8.6.
This is when double vision started and I had an MRI and diagnosis of TED.
Carbimazole was stopped for a few weeks but fT4 climbed up to 33 and I was changed to Block and replace.
The above is an example of how quickly some like myself react to Carbimazole. Others have a lesser response. It's definitely not one size fits all.
Thank you for sharing your journey. It really helps. I know we all have individual reactions to medicine and journeys, but having a picture how it works for many brings at least some understanding of all the possibilities and what to look out for too. And good to know you found your treatment
It is usual to start on a high dose of carbimazole and as your FT4 & FT3 come down the dose adjusted down to stop you going under range.
Carbimazole works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3. So it reduces production does not remove existing stores from the body.
So at the moment your doctors is using their “best judgement” to guess what will work.
There no accurate way to calculate:
1 - how much your thyroid is over producing
2 - how much carbimazole you need to bring it to the right level
3 - how quickly your system processes existing stores
All variables which will be unique to each individual.
A FT4 of 55.1 to 42 is in the right direction. It usually it takes 6 - 8 weeks for the full affect of a new dose to show.
They are testing frequently initially to make sure everything’s on track. Ensure this is judged by FT4 & FT3. The TSH can take a long to respond. In some cases it doesn’t at all. I’ve taken carbimazole for 3 years & my TSH is still <0.01
I had a referral in place and I was put on 20mg carbimazole as GP liaise with endocrinology at same appointment. Then I was forgotten about as the specialist sent me a pre clinic blood test form, but practice reception wouldn’t let me book a test until I had a appointment scheduled. The specialist team were waiting for the results before booking.
It was over 2 months before I was tested & seen again and I was nearing hypothyroid at that stage. The dose was halved & I was also told to stop 3x 40mg propranolol I’d also been given.
If I hadn’t chased it up it, It would have been longer. I did have a continuous hyper, I’d have been made very I’ll if the rise was transient.
Stopping the propranolol abruptly made me very Ill with migraines. GP restarted them a month later & still take low dose now.
Hi PurpleNails, thank you for your response and story. I am sorry you were forgotten and had to come to the edge being hypo. Where were your T4 /T3 when they reduce the dosage? I know we are all individuals having unique reactions and journeys.I appreciate and I gather understanding from every persons journey. This helps. Do you have something to share about B12, folate, D, ferritin,iron levels? Did you find you had to supplement these on your journey ?
The doctors described me as being very overactive, (because my TSH was 0.01) I was shocked as I thought I would have hypothyroid. In reality my FT4 was fractionally over range (about 120 % of range) FT3 was nearing double (was a bit over 180% of range). So nowhere near as high a typical autoimmune Graves gets - I have a toxic nodule. More of my history on my profile.
I did have some symptoms but nothing shouting out. I was gaining a lot of weight.
I do know from looking at historical records my levels were high many years before. I think my appetite was so great it overshadowed any metabolism benefit & my zero energy meant weight gain - not loss.
2 months on 20mg (10 morning & 10 evening) my FT4 was under 40% & FT3 was better at mid range. So not hypo on paper but I remember I didn’t feel better, perhaps worse, as I seem to be quite sensitive & symptomatic to levels dropping or rising, but well when stable even If low or high in range in not affected. That said I never been very high - my experience is having elevated levels long term.
My FT3 did go under range at one stage. Just before covid lock down - when the doctor wrote to me & my GP cancelling next appointment and saying as I was “more or less stable” she can stay unmonitored & carry on for now. I wasn’t even told my FT3 had gone under and the dose wasn’t adjusted. I think it was just luck my levels rose & settled as I wasn’t checked again for 5 months.
My nutrient levels have often been acceptable to GP but not optimal. Ive arranged private tests in past & supplement where needed.
Currently I take vitamin D & K2 spray.
I take a collagen, selenium & vitamin C effervescent in a drink.
Magnesium.
From reading I learned magnesium often low in many as sources in food have reduced. Also can be a factor in hyperthyroidism, migraines, type 2 diabetes & overweight people - all of which I have, plus I use Propranolol which is known to reduces magnesium levels. I take a high dose powdered citrate magnesium at night which helps sleep and virtually cured a lower eye twitch I had had long term.
In past I’ve taken:
B complex.
I also taken 200mcg higher dose of selenium which is recommended for eyes & TED. Which I have no official diagnosis for. (Maximum of 6 months then reduce).
L cartinine & acetyl forms which are said to reduce FT4 : FT3 and therefore a good to partner with carbimazole.
If there is no evidence of a swelling in you neck an you are not aware of an obstruction when swallowing or eating the main reasons why you are suffering symptoms of hyperthyroid are either because of one of two auto immune diseases.
Initially the only way to tell which AI disease you have is by having an antibody blood test analysis run, generally run from the first blood test, as results dictate.
The unique antibodies for Graves Disease are generally expressed as either a TR ab ( a thyroid receptor blocking ) or a TSI ( a thyroid stimulating ) and either one of these needs to be over the range and positive to be diagnosed Graves - a multi organ auto immune disease for which there is no cure.
Your immune system has been triggered to attack your body ( why being the 64million $ question ) and your T3 and T4 levels keep rising , which can be life threatening, and the anti thyroid drug, either Carbimazole or PTU is prescribed to block your own thyroid production rising any further and slowly you T3 and T4 will start to fall back down, into range. If your heart is involved you may also be prescribed a beta blocker.
The NHS allocate around a 15-18 month window for treatment with AT drugs and generally close management and titration of drugs with AT drugs and it takes great skill to get on an even keel, to manage raging antibodies and block with just enough AT drug to allow you to feel relatively well and symptom free.
Too high a level of T3 for you and you well feel hyper just as too low a level of T3 for you and you will feel hypo, which can be equally, if not more, disabling.
The hope is that with the AT drug buying you time this has given your immune system response time to calm down and everything reverts back to your ' normal ' .
The most recent research is showing the longer one stays on the AT drug the better the outcome for the patient and more likely the patient will be in finding this " remission " ' that the NHs talk of. pubmed.ncbi.nlm.nih.gov/338...
Hashimoto's is the second option, and much more common in the population, and generally diagnosed from high and over range TPO and Tg ab antibodies, though you can have both of these AI diseases running together and then Graves takes precedence as considered life threatening.
Hashimoto's is not treated with AT drugs as the T3 and t4 levels do not rise as high and fall back down the range by themselves - however your thyroid will be vulnerable to further attacks, and ' swings ' in symptoms and further damage and you will become hypothyroid and need thyroid hormone replacement to replace and support the damaged, disabled gland.
Irrespective of which AI disease you have, when metabolism i running too fast or too slow you will have trouble extracting your key store vitamins and minerals from your food and just low levels of vitamins and minerals will pull you down even further so please arrange for your ferritin, folate, B12 and vitamin D to be run and if you relay any blood tests and ranges back to this forum you will be helped and advised what the next best steps for you are.
The NHS can't resolve either of these AI diseases and after diagnosis they don't see it as they can't do anything anyway.
You can try and understand why this may have happened and work on food intolerances and calming down your immune system response.
There is likely a genetic predisposition so you maybe able to blame someone else if this makes yo feel better, find things you like to do, cut yourself some slack and be selfish with your time and be kind to yourself.
You are probably now with information overload and maybe ' all over the place ' - but try not worry as stress and anxiety are known triggers and do not help anyone.
Thank you Penny for all the information and words of encouragement. I have luckily found this group in the first days of knowing my results. I have deep interest in health and diet, and I love to solve puzzles. I nearly died of meningitis in my late 20s and in my late 30s I had the 4 year challenge with chronic fatigue. These thought me to change my life style big time already. This time I changed my diet to autoimmune protocol in the first week of blood test results, working closely with Chinese medicine doctor and implemented high quality probiotics protocol. Having a pint of fresh green juice is a daily and in the combination of carbimazole I am feeling inside great and the outiside is catching up. Basically I feel like I can fly inside but my body is saying no way not yet , sit down often and be merry you are not in bed :)Do you suggest I make a new post with vitamin and mineral question? As I have these results and are in my post here. Ferritin’ looks good to me , b12 , iron , folate can do with attention … what do you think?
Yes, new questions, and any new information all deserve a new post.
This forum runs very fast due to number of people feeling confused and unwell though told they' are fine ' amongst other things - but you may still be picked up on your questions regarding vitamins and minerals :
In the top right hand corner if you scroll up you should see a section dedicated to vitamins and minerals and also register with Thyroid UK - if you haven't already, as they are the charity who support this forum and where you will learn of all things thyroid.
There is a vast pool of knowledge, expertise, experience and kindness here, use it, and start reading up as you will likely need to become your own best advocate.
Having had an episode of ' chronic fatigue ' I do wonder if this was not the start of your thyroid journey ??
Many thanks penny I am appreciating you and this forum greatly and the kindness and vast information I witness. My thyroid function was great during chronic fatigue. Worked with a German doctor on live and dry blood analysis and she found I had residues from the bacterial meningitis. When I was on high alkaline foods I felt great. I think this is my final lesson that strict clean Whole foods diet is the only way to manage any kind of inflammation in my body.
Just to follow on from what Pennyannie said regards vitamins and minerals. Endo/GP didn't measure them and like you I have a very healthy diet and lifestyle so concluded I would be ok. However, because it is mentioned so often in the forum I did a private blood test and found Vit D ,Vit B12 and folate were all low in range and now supplement with guidance from the forum and they are now optimal.
I am glad you are now in the optimal vitamin and mineral range Asiatic. Wonderful that here there is support and guidance. My gp test me straight away for b12, folate, ferritin, iron level when I was not well. They are normal for their standards but I see I can have them in better ranges. She did not test vitD but I have been supplementing D, zinc and Selenium in the outbreak of covid. I will be so surprised if these are not optimal. I will post these results on the vit and mineral page and hopefully I will be on the optimal path too.
Just to tell you my story: I was diagnosed with hyperthyroidism (caused by Graves' disease) 10 years ago, when I was 35. I was very hyper: FT4 >100 and TSH undetectable. I couldn't speak (out of breath), walk (too weak), eat (too nauseous), I was sweating and trembling a lot. Headaches, photophobia. Severe muscle aches. Heart rate almost 200. A total wreck. I was put on Carbimazole, I don't remember the exact dosage, and Propanolol. After a couple of weeks I started to feel a bit better. I did go hypo a couple of months later, but it was quickly corrected and then I found the right dosage. In total I took Carbimazole for exactly one year (to the day!). I've been in remission ever since. No special diet, I didn't cut out gluten or eat anything special. I just tried to take it easy as my endo told me to avoid stress. Over the course of the years there have been very stressful situations (international moves, death of a parent), but I didn't relapse.
What I want to stress is that it is really important to be patient and to be kind to yourself. This is not a situation that will get resolved in a few months. It took me about three years to feel "normal" again, especially my heart took ages to recover. I had slight eye symptoms for a while, but those disappeared by themselves. I took Vitamin D and Selenium supplements.
Rest, take it easy, don't push yourself too much. Hyperthyroidism takes a big toll on your body, give it time to recover and recalibrate.
I am very grateful I am still doing okay after nine years without medication. So it is definitely possible to make a full recovery!
Dear Misky, I just read your story and I am taking note that your T4 was 100 and TSH 0.005 heart rate 200 and you were put on 15mg carimazole. Then on 10 mg and you went into hyper temporarily? My T4 was 55.1 , TSH 0.01 heart rate was always around 90 s and I was put on 30mg carbimazole for 3 weeks , now I am on 20mg T4 after 2 weeks on 30mg was 42. I understand this is a fast way to bring T4/T3 down and then go on steady low dose. It looks like you could bring down T4 from 100, and feeling worse then me, on 15 mg carbi. Cann I ask please, Were you on 10mg for the rest of the year?
Thank you Misky for sharing your story. I am so glad you are doing ok (despite big life challenges) and you are 9 years without medication I believe full recovery is possible. Thank you for your sound advise and good wishes too. Best wishes to you and yours
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