I started out severely hyperthyroid last year, managed to get better on the initial 40mg Carbimazole, after that was on different levels of Carbimazole but either too much or too little. About 3 months ago I went hyper again and it made my TED (Thyroid Eye Disease) much worse (blood results below). I felt the endocrinologist wasn't listening - so wrote a paper letter (only way to get in contact with them?!). Had a call back from another Endo who said she'd like me to try Block & Replace which I was happy to do. Felt it must be easier to control my symptoms and desperate to not make my TED any worse.
I have been on B&/R for about 6 weeks 40mg Carbimazole and 50mcg Levothyroxine, but feel I am getting very lethargic, sluggish and seem to gain weight (hypo symptoms?), but at the same time - I now can't sleep and I seem to be loosing hair (hyper symptoms?) but don't have any of the other hyper symptoms I used to have (hot, fast heartbeat etc.) So my questions are:
- is it possible to have both hyper and hypo symptoms in one go?
- will an increase in Levo help the lethargic symptoms?
- how much medication are people on B&R generally taking, as I hear some take more than the 50mcg Levo.
Any thoughts welcome before I speak to the Endo on Wednesday...
Blood results:
Feb: TSH 1.77 - T4 16
Mar: TSH <0.02 - T4 30
Apr: TSH 0.09 - T4 17
May: TSH 0.18 - T4 21
and thank you so much for this forum, it's so helpful.
Written by
Henry6
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Often people will have classic hyper or hypo symptoms but sometimes they don’t. When you first started on levo, you will have had some of your natural stored hormone remaining, so if that’s all been used up, perhaps you will need a larger dose of levo. Presumably another test has been ordered ?
Once they get the dose sorted, your thyroid should be more stable on B&R.
Like Lalaloot I find some overlap with hypo/ hyper symptoms. The most reliable one for me is my resting pulse. Normally in the 60's. It goes down to 50's when hypo and 80 to 120 if hyper. I have been on B and R a few years now. Presently 5 mg Carb and 50mcg Levo. It took a lot of monitoring to get the correct dose. I went to GP for full thyroid panel TSH/ fT 4/fT3 every 6 weeks. I then emailed the results plus symptoms to the endo who worked with me to reach the lowest effective dose. I did not want or need to be on as high a dose as you are longterm. Unlike you my TED flares up when I go even slightly hypo. Hope B and R works for you too. Make sure your doc includes fT3 to get the full picture.
Thanks for your reply, as it is, I can't tell what makes my TED worse - but it coincided with me going hyper. It's interesting that you got a full thyroid test - my endo will only do TSH and T4, told me T3 wasn't relevant. But will include that in my chat on Wednesday. I haven't seen this particular endo in person, the one I saw was completely uninterested and you were out of his office in 3 minutes.
I'm thinking the dose will have to be adjusted but can see it needs to be high to start off with.
I would want to change my endo if he told me T3 wasn't relevant. To get the best from your next appointment you might want to post a new question. Why is it necessary to measure fT3 ? You will get answers from knowledgable people on the forum. This will allow you to have an informed discussion with your endo. You have 3 days to swot up. Good luck !
Apart from these TSH blood test results, do you have the corresponding T3 and T4 measures, as looking just at a TSH result doesn't really say anything of any relevance.
T3 and T4 need to be back ' in range ' and it's the fine balance between these two vital thyroid hormones that is important and it is the T3 that causes the symptoms of either an over or underactive thyroid.
The symptoms of hyperthyroid and hypothyroid can overlap - it can be confusing and it might be a question of titrating down the AT medication - Carbimazole first and then possible looking at the level of the Levothyroxine.
The AT drug blocks your own thyroid hormone production - Levothyroxine is adding some thyroid hormone back in so you don't fall too low into hypothyroidism.
No thyroid hormone replacement works well if your vitamins and minerals, especially ferritin, folate, and vitamins B 12 and D are not maintained at optimal levels, so this may be another area that needs to be checked out.
I'm with Graves diagnosed 2003 and post RAI in 2005, a treatment I deeply regret, and now manage lingering Graves, thyroid eye disease caused by the RAI, and hypothyroidism.
Experience has taught me that no thyroid hormone works effectively unless my ferritin is up and over 90 in its range. The same applies to the others as mentioned above in that it's not just ok to be somewhere in a NHS range, as we need higher than average levels and you may find you need to supplement these yourself.
If you haven't heard of Elaine Moore, you might like to dip in to her well respected website. She too has Graves Disease and finding no help with her health issues after the RAI treatment started researching herself, and then went on to write a book, entitled :-
Graves Disease a Practical Guide, to help others who may have found themselves in a similar situation.
I purchased her book and it helped me gain a better understanding of this poorly understood and badly treated auto immune disease.
Now several years later there is a very well researched website, and several books, and an open forum, much like this amazing platform where you can ask questions of the forum members and learn from each other, and where Elaine takes an active role.
P.S. Do you have a positive reading from a Graves Disease blood test - showing you with either TSI -( stimulating ) or TR ab ( blocking ) antibodies ?
Thank you for your reply. Sorry, should have included reference ranges. Free T4 (12-22), TSH 0.25 - 4.
I have no T3 figures as I've been told it's not relevant..
Nor have I had a Graves Disease blood test.
I'm taking vitamin D + C supplement and Selenium, but nothing else. Had my D vitamin tested and they were all pretty much in the middle of the reference range. I will have a look at ferritin.
I have had a look at Elaine's website, and bought the book she has about Thyroid Eye Disease which was really helpful.
They wanted me to have the RAI but I've said no, for as long as I can 'manage' on tablets I will.
It's interesting that the symptoms can overlap - that makes sense of what I feel at the moment, and something I will discuss with them on Wednesday.
Well, since you already have TED you are NOT a candidate for RAI as it is likely to exacerbate your existing symptoms.
T3 is the most important number - the body runs on T3 not T4, or Levothyroxine.
The thyroid is not the cause of your illness but the victim - as it is the target of an attack by your own immune system.
The cause of your illness is your immune system attacking your body, and when it attacks the thyroid, it is because the thyroid is such a major gland that the symptoms experienced by some people are said to be life threatening.
Loosing one's thyroid to an auto immune disease doesn't solve the underlying problem of that being your immune system, mistakenly, firing off and attacking your body.
I am now self medicating and having to source and buy my own thyroid hormone replacement as the NHS does not routinely prescribe anything other than Levothyroxine, T4. after RAI or a thyroidectomy.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. with T3 being about 4 times more powerful than T4.
Levothyroxine - T4 - is a storage hormone which your body needs to be able to convert into T3 and this mechanism doesn't necessarily work well in all of the people all of the time, and some people need both T3 and T4 medicated and dosed independently, to bring them both into balance and to a level of well being acceptable to the patient.
Personally I simply think that if you have had a medical intervention, either RAI thyroid ablation or surgery to remove the thyroid, both T3 and T4 should be on your prescription for if, and probably when, it will be necessary for patient well being.
There is a school of thought, and acknowledged by Professor A Toft, the eminent endocrinologist, that it is feasible to manage Graves long term with low dose AT medication and that there is no need to loose this very major gland which plays an integral part in mental, physical, emotional, psychological, and spiritual well being.
The professor detailed his thoughts in is final years, before retiring from the NHS and pretty much sums up where we all are, with regarding to the system currently in place:
Thyroid Hormone Replacement - A Counterblast to Guidelines : Professor A D Toft : The Journal of the Royal College of Physicians Edinburgh : December 2017 :
"Tis on here somewhere, sorry, you'll need to find it, I can't do that cut/paste thing !!
You should also have the medical evidence of the Graves antibody blood test, as it is possible to have TED without having Graves Disease.
I was on block and replace 40mg carb and 100 mcg levothyroxine. However it didn't agree with me had hives and weight gain. I'm on just 10mg carb now to see if that's any better. It's a constant juggling act
I had the same thing in 2012, was put on 40mg Carbimazole and left to myself. As you can imagine, after a year I was hypo... Doctor wouldn't hear about it, so 'made them!' refer me via private healthcare to an Endocrinologist who immediately took me off the medication and didn't have any problems until last year.
So how do they test for Graves? Suppose I can google that myself
Medichecks do a blood test for the Graves antibody - however I read the disease waxes and wanes and don't know if that applies when having a blood test checking for the anti bodies at any one time :
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