What vitamins should someone with Graves take if on a low dose of Carbizamole.
Vitamins and Carbizamole : What... - Graves Disease Su...
Vitamins and Carbizamole
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Hel37ena
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I’m on low dose carbimazole. I have a nodule (not autoimmune)
This is what I take.
vitamin C (immune boosting)
Selenium. 100mcg immunity, used in support thyroid & eye health
Magnesium citrate powder (375mg) in evening. co factor of Vitamin D help me with eye muscle twitching
Vitamin D & K2. Combined spray sold as 3000iu daily dose.
L - cartinine & Acetyl cartinine. Low dose (250mg) both forms,
(500mcg) max dose of either for. I think alternating types helps. This is said to enhance carbimazole
Best to test vitamin D to make sure level can be maintain in optimal range. Most of us in UK - if protecting skin as recommended - need to dose all year round.
The other vitamins can safely be taken without need to test first.
is this for yourself? Your previous post said you had thyroidectomy so it’s unusual to become hyper again?
Sorry if this is duplicated, but my reply seems to have disappeared.Iam asking for my husband who has recently been diagnosed with possible Graves, awaiting confirmation of blood tests. Who knew we would both have Thyroid problems😥 Iam trying to advise so he can make right decision re AT drugs V RAI so wanted to be aware whether vits would be helpful while on Carbizamole .Thanks for your response.
OK - Just sending a couple of links that you might like your husband to read :
I repeat the question - does he have a positive and over range TSI or TR ab antibody test, and what were his T3 and T4 levels at diagnosis and where are his T3 and T4 now , what time scale are we looking at, and how much AT drug is he now taking ?
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
I have Graves and had RAI thyroid ablation in 2005 and now manage lingering Graves , thyroid eye disease - caused by the RAI - and hypothyroidism : I deeply regret this treatment - I was well on Carbimazole but told it was too dangerous drug to stay on long term.
I now need to self medicate with full spectrum thyroid hormone replacement if I'm to have any QOL as T4 - Levothyroxine seemed to stop working for me around 8 years post RAI :
The Elaine Moore Graves Disease Foundation website has to be the most well researched and well rounded of all those I sought out as Elaine has Graves and finding no help with her continued ill health after RAI thyroid ablation started reseaching this poorly understood and badly treated Auto Immune disease for herself.
Awaiting results of antibody test, T3 9.80, T4 22.9 but test after AT drug still awaiting cabizamole increased to 15 last week. Thankyou for the links and your experience, a tough decision to make so I want him to have all the info, he does not do fb, social media or computers so I need to obtain all info, appreciate your help.😀
Well, no, nor did I until I became so unwell and had to start to question my treatment :
Were these his results - a T3 of 9 and a T4 of 22.9 - at diagnosis - or after the AT drug ?
I'm guessing the ranges were 3.10 - 6.80 for T3 and 12 - 22 for the T4 ?
Ranges were T4 9-19 andT3 2.40-6.00 a bit different to your quotes ranges, do they differ that much from area to area. I think the test I am quoting 1st March was after initial dose of 10 Carbizamole but so.much has been happening I am not sure. We cannot obtain bloodtest results online but I usually request a copy and they send it to me.
The ranges vary from one laboratory to another and dependent on the testing analysis machines used.
So - it would help to see a T3 and T4 result and range from the initial blood test run before he started AT medication.
What symptoms took your husband to the doctor does he have any other health issues ?
P.S. just read your reply below re symptoms :
So your husband has been started on Carbimazole on just a TSH of 0.01 and do you have the T3 and T4 results from that original blood test ?
His symptoms were shakiness and jitteriness. The endo has increased the AT drug but we still do not have the medical evidence of Graves and are waiting on the antibody blood analysis.
Hi Pennyannie, After the Easter break I will see if the blood test results are back re the antibody test for graves and obtain the original blood tests so that we have a better picture. Is a TSH of 0.01 not a typical indication for ATD then?
OK then - maybe if you get those links I sent you printed out your husband will feel more comfortable reading, holding and keeping paper copies of important relevant information - as that is how I have learnt to manage as I'm with very little " tech " ability.
To have run a TSH and to have found it low suppressed, I would think the laboratory would have gone further and also run a T3 and T4 and the antibodies.
A TSH seen in isolation isn't enough information, in my opinion, to start medication.
Morning Pennyannie, thankyou will print off all the info for him. Appreciate the help.
Im always a bit dubious when people have been started on a low dose carbimazole by their doctor.
What dose & for how long has he been taking it?
Usually with Graves levels are quite high and it’s necessary to put people on quite a high starting dose. So either levels are not very high & it’s not Graves at all, or the doctors don’t have a clue what they are doing.
What were his symptoms & were they severe?
When the TSH is low but FT4 & FT3 are in range doctors still like to lower the thyroid levels further just to make the TSH rise. Drs don’t always test FT4 & FT3. Often carbimazole is not necessary and the TSH will rise naturally & thyroid levels drop very quickly.
Do you have online access or copies of printed results & ranges. You need to know what’s being tested and the level of results.
If Graves is suspected it’s really important to confirm with either TSI or TRab antibodies are positive.
TPO & TG antibodies can be present in thyroid autoimmune conditions - but are not sufficient to confirm Graves. It indicates autoimmune - both thyroiditis (Hashimoto’s) and Graves.
There are other reasons to be hyper. Or have low TSH. Hashimoto’s can start with transient hyper. Hot Nodules can also cause continuous hyper usually at a less severe elevation.
Doctors rush to treat hyper with RAI as it’s an easily administered treatment and they view hypothyroidism easily treated by GP. But I would take time to research it carefully.
Graves has good chance of going into remission.
Please see responses to Pennyannie, symptoms were shakiness, jittery and initial blood test TSH 0.01 GP started on 10mg Carbizamole and referred to Endocrinologist whom he saw last week and received possible Graves diagnosis, blood tests as stated still awaiting results. Consultant did increase carbizamole to 15mg. Advised RAI best treatment,??? Hubby not happy about that hence research by me, thankyou for the info we have a lot of reading to do. I myself am hypoparathyroid since my TT so know that research is critical.
FT4 of 22.9 - (9-19) FT4: 22.9 pmol/l (Range 9 - 19) 139.00%FT3 9 (2.40 - 6.00) FT3: 9 pmol/l (Range 2.4 - 6) 183.33%
Sorry you seem to be having 2 conversations with the two of us asking similar questions.
Ranges do vary between labs, the range you quoted is completely normal. We look at the % through the range.
The results are clearly above range. Was this after some weeks on 10mg carbimazole? or at diagnosis?
Suppressed TSH 0.01. Often means levels are high. But not always. The level of carbimazole needs to be judged by FT4 &FT3.
It depends on if they were very much higher how 10mg has brought down the levels to say if an increase was right. It need to be adjusted but FT4 & FT3. TSH takes too long to respond.
Usually carbimazole is trialled for a least a year or 18 before considering surgery or RAI. Why are doctors pushing so early?
Hi, Not sure why pushing for RAI Consultant did say that men of his age 70 are not usually helped by long term use of Carbizamole and Graves could affect heart so the sooner treated better,H is looking to see why he cannot be treated with ATD for at least 18 mths to see if goes into remission but is concerned he wasn’t started on high does of ATD first with a view to reducing. Not even got the antibodies results yet so a bit confused.
Well poorly managed Graves with unstable / high levels FT4 & FT3 is not good for heart. But low TSH is not the same and doctors focus on TSH which tends to lead to patients being left unwell.
Low FT4 & FT3 can also affect the heart.
There are rare side affects with carbimazole but they are very low. Ask his doctor for risk % levels, I doubt they actually know.
Ask if they carefully monitor for signs of issues - Regular full blood count & liver function? I was told that’s not routine, if you present with symptoms then a test will be arranged. Maybe that different with the over 70s.
Some doctors imply carbimazole is damaging eg to white cells but this is not accurate either. The risk remains the same as when starting as months and years later.
I’m in my early 40s. At my first appointment Doctors asked me if I planned to have more children. As I didn’t they suggested I undergo RAI.
I think if you have young family they allow some time but now seem to rush everyone else into treatment.
I wasn’t left feeling very confident when I was sent a consent form and wasn’t given chance to discuss or ask further question. Being fobbed off with a leaflet. Trying to find out more & being told everything else you need to know will be explained at the time of procedure. Trying to find out about isolation requirements I would need to know beforehand. They had obviously made incorrect assumptions about my children and work.
I delayed having RAI but more recently the consultant said she did not want me “on her books” So she discharged me to GP until I make can arrangements for RAI.
As I’m just monitored I was ok with GP doing it.
I’ve been on carbimazole over 3 years. I’m in no rush (I’m still making arrangements)
You may find more advice on the main thyroid forum. This forum doesn’t have many members but the main thyroid forum is super busy & some very knowledgeable moderates & contributors.
There are also a few members who are hypothyroid having had the procedure and feel it was a positive treatment. Although logically most that have had positive outcomes are not seeking help on a forum.
Thankyou, food for thought, will take a look at main forum.Appreciate you sharing your experience.
Hello Hel37ena :
We generally recommend maintaining ferritin, folate, B12 and vitamin D at optimal levels :
Looking at your previous post I see you had a thyroidectomy some 4 years ago.
Was this because of Graves Disease or is this a new health issue you are now managing ?
Do you have a positive and over range blood test for either of the antibodies unique to Graves, either that of a TSI ( a thyroid stimulating ) or a Tr ab ( a thyroid receptor blocking ) antibody ?
Are you suffering with Graves Ophthalmology ?
Thankyou for responding, please see my response to purple nails.
