I’m looking for a bit of guidance, apologies in advance for the long post.
I was diagnosed with Graves about a year ago after feeling pretty unwell. I’ve been treated with titrated Carbimazole 40mg down to 5mg currently. If I felt unwell a year ago I feel absolutely terrible today. I am so bone numbingly fatigued, suffering from multiple migraines a week. The mental sluggishness and memory loss are totally debilitating & I’ve become solitary as I simply don’t have the energy to interact. I have had to give up my work as a yoga & dance teacher, losing both my income and my sense of identity & closing my little business that I have poured my heart & soul into... here are my results from a year ago & my most current:
Jan 2018 / Jan 2019 / Range
FT3: 13.4 / 3.2 / (3.1-6.8)
FT4: —— / 12.5 / (12-23)
TSH: <0.02 / 3.6 / (0.27-4.3)
TPO: 158 / 54.1 / (<30)
TGAB: — / 451 / (<60)
TRAB: 6.1/ — / (1-1.6)
B12, ferritin & pretty much all the other vitamins are on the low borderline ( within first 5 percentile of normal)
I went to see Endo today & he basically refused to hear me. Everything, according to him, is going perfectly. He’s very happy with his treatment and my levels are ‘absolutely normal’. My symptoms and the impact they are having on my life have ‘nothing to do with the thyroid’. He has ‘patients with levels lower than mine that do not even feel tired’. He suggested that perhaps I suffer from anxiety (I don’t) and that I should look at ‘other things going on in my life rather than blaming my thyroid, it is (click of pen as he points to the numbers) normal, normal, normal, normal!’
I asked about the merits of block & replace so that I could find a more optimal level that would enable me to function in the world. He shook his head and laughed. I advised him I was unable to see what was so funny ...
So the guidance I’m seeking is fourfold:
1. Are my levels normal & should I be looking for an alternative explanation for my symptoms? (I sleep well - too well (!) I’m not anxious or depressed & my only major stress is the consequences of living with debilitating pain & exhaustion every day)
2. If my symptoms are connected with my thyroid levels is there anything I could be doing to improve my wellbeing either within or outwith the medical framework (eg. is block & replace an option I should consider? Supplements? I eliminated gluten from my diet within the first few months after diagnosis & am seeing neurologist for migraine management)
3. What is the meaning of having Hashimoto antibodies alongside Graves antibodies? Am I correct in understanding that the presence of these antibodies will ultimately cause the deterioration/ destruction of the thyroid gland ? (Endo refused to answer this, stating ‘it just indicated autoimmune. It’s all the same’.) I don’t understand why it’s not relevant to treatment planning...
4. Any ideas where to go, what to do next?. I have no future relationship with this guy. Is there such a thing as a specialty in autoimmunity?
If you’ve read this far, thank you I’d be very grateful if you feel able to share any insights, experiences or anecdotes with me.
Clara
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I am so sorry to read you are having such a difficult time. I have read your post/thread of ten months ago too. I am far from knowledgeabe about Graves but can see that your latest results look Hypo. Your idea about block and replace sounded feesible as Valarian suggested in your last post I believe.
It was also sugested it could be Hashimotos or both which must be confusing. Sorry I have not been much help and hopefully someone will be along soon with more experience. We are two hours ahead in Crete so am up and about !
Really hope you are soon well enough to return to your yoga practice and business. Your Endo sounds very unpleasant - hopefully you will find another to support you - one that understands test results and has a ♡ ...
Thank you Marz, I appreciate you taking the time to respond so kindly. I do feel that my symptoms are consistent with hypo but also struggle with the doubt that I am going slowly mad! Yesterday tapped into the worst of those places of self doubt .. I think you’re right, a different Endo might provide me with options, or at least explanations, that would help me navigate through my experience of this disease in a way that wasn’t so disempowering and detrimental to my everyday life. I guess that would mean a trip back to the GP for a re-referral?
Thyroid UK have a list of Thyroid friendly Docs - look around the forum and you should come across the e-mail address required ... I will tag a few members who will be in touch ...
I can sympathise with just how low you are feeling at the moment. A year ago I was like you diagnosed with Graves but feeling hypo and under the care of a patronising endo who insisted the small dose of levothyroxine I was taking would not be doing anything. I was on block and replace 20mg Carbimazole plus 25 mcg Levo. He wanted to half the Carb, and stop the levo. I knew this would make me more hypo. I too do yoga and if attempting the plank position my arms immediately started shaking I knew I was hypo ! I had had enough by that time and decided to be more proactive. I doubled my dose of levo instead of stopping and wrote a letter to my GP about all the mistakes I felt this endo had made in treating me ( there were many ) Result was a referal to another Endo who understands I am hypo. I am currently on 5mg Carbimazole plus 50mcg levo and feeling great and back to yoga again. Enough about me ! Advise change your endo and perhaps post a question on Elaine Moore forum. She is very knowledgeable.
Oh Asiatic, I’m sorry you struggled too with your Endo not listening to your experience, and thank you for sharing with me. I too have experienced the shaking situation, I’d be leading a yoga class, whole body vibrating through the poses, outwardly emanating calm & inwardly praying that I didn’t collapse!!
Thank you for the tip about Elaine Moore, I haven’t come across her before so I’ll certainly look her forum up. Did you research & request a specific Endo when you changed or was it blind luck that the next one was more patient centred?
To be honest any endo had to be better than the one I had.
GP said he could only refer me to an endo within our health authority. This meant it would be an endo at the same hospital and I did think they would all be the same ie experts in diabetes not thyroid. GP assured me he knew one knowledgeable in thyroid autoimmune disease. The new endo aknowleged my treatment had fallen short and set up a system to monitor me where GP takes bloods but has no other input. I pick up results and email them to him and he emails me back any changes. My perseverance paid off but luck was also involved. Hope you are lucky too. Do try Elaine Moore Site as it is mainly for Graves.
I had the coeliac test done about a year ago - apparently it came back negative although it’s not recorded in my notes. There is coeliac disease in the family so I decided to cut out gluten anyway. I have no idea if this has had any impact on my Graves/ Hashis.
I have emailed Dionne & received a list of Endos, so thank you for pointing me in the right direction for a re-referral .
The results of my vitamins etc are:
Active B12: 33.7 (25 - 165)
Ferritin: 17.3 (13-150)
Folate: 12.4 (9- 61)
Vitamin D: 53.2 (50- 100)
I’d welcome any advice on supplementation to get those levels optimal
Active B12 should be over 70. Clearly 33.7 is very low
Folate also rock bottom
See GP and ask for full testing for Pernicious Anaemia before starting on B12 injections
Folate supplements should not be started until 48 hours after first B12 injection (or B12 sublingual supplements (if Gp is difficult of unhelpful)
Ferritin is terrible, you need full iron panel and likely ferrous fumerate supplements 2 of 3 per day. Possibly iron infusion. This would improve iron much quicker
So see GP for Pernicious Anaemia testing and iron panel test
Vitamin D needs to be at least around 80nmol, many find around 100nmol better
Starting with vitamin D first. Suggest you supplement vitamin D mouth spray by Better You. Perhaps 3000iu daily. Retest in 2-3 months
It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Thanks SlowDragon, that’s really interesting, I’ve always been anaemic, and since I got a ferritin result of 4 (17-291) in 2015 I’ve been taking liquid iron daily, so those latest results are whilst on supplementation. I’ve various other abnormal factors going on in my blood work, such as unusually small blood cells, low volume of blood cells, low lymphocytes and low haemoglobin, also low creatin clearance, all below normal range. I’ve had a quick look at pernicious anaemia & I’m not sure that fits, (seems to be associated with overly large blood cells). But thank you for flagging this up, I hadn’t considered the contribution these buried blood results ( never been discussed with me - just told to take iron) might be having on the terrible way I’m feeling. I will bring it up with GP when I see him on Friday. Is there anything specifically you think I should be asking for?
Graves is an autoimmune disease, and as such it is for life, our DNA.
There is probably some genetic predisposition, maybe a generation away from you, and something has happened to trigger your Graves episode.
Your results do seem to look as though you are currently hypothyroid, and your Graves antibody TRAB seems to have disappeared, whilst TPO and TGAB are high.
I would have thought Block and Replace a sensible option to hopefully bring up your T3 and T4 - thereby reducing symptoms and allowing you some respite.
You acknowledge that your vitamins and minerals are not good, and just this area alone can make a massive difference to how you are able to utilise your medication.
If you post these results people better qualified than me will advise you what to supplement to bring up to optimal levels and you need all the help you can get to keep your body strong during this difficult time.
I don't believe the medical profession know anything about antibodies.
The treatment is the same irrespective of the level of the antibodies, as medics can't control the antibodies or offer any relief or understanding.
So, it comes down to the individual to try and manage the antibodies themselves.
Diet and life style changes may need to be considered, everybody is different.
I read Graves is stress and anxiety driven, or can occur after a sudden shock to the system.
I read the course Graves disease is different for each person, so medical knowledge is sparse and it seems it comes down to each person having to become their own doctor.
Elaine Moore has Graves Disease - she has a very comprehensive website, open to all, it is USA based, so there might be some different medical protocols but it is worth looking at.
She also has a book Graves Disease - A Practical Guide - she went through RAI and certainly doesn't recommend that treatment, but there is a section on what you can do for yourself. I have the book having been on the same journey as her, but in the first instance, suggest you go on her website as it seems to me you're also with Hashimoto's and I've no knowledge in that area.
Dr Barry Durrant Peatfield - Your Thyroid and how to Keep it Healthy - is very informative about all things thyroid and is a very good read written by a man with hypothyroidism.
If with Graves and Hashimoto's I think it makes things more complex, and it might be an idea to look for recommendations of an endo who is supportive to autoimmune conditions and there is a list here on this website in the first instance.
Yes, there’s actually quite a lot of autoimmunity in my mum’s family, not thyroid, as far as I know but, MS, coeliac, arthritis, sclerosing cholangitis, to name a few. It is actually the autoimmunity that I am much more interested in understanding & treating as I’ve sadly seen many of my female relatives die too young after many years of suffering from these conditions.
It seems crazy that there is no specialty in autoimmunity, and so little interest in understanding the mechanisms. The costs of this lack of joined up thinking, both in terms of economics, and in terms of lives ruined, must be staggering.
Thank you for steering me towards Elaine Moore’s website, it’s proving to be a really valuable resource for me and I will check out Dr Peatfields book too, looking at it from both angles should be really helpful.
I’ve posted my vit levels which SlowDragon is helping me with & ive received the list of endos from thyroid UK so will look for a medical re-referral, backed up I think by some integrated medicine support for the autoimmune factor. Have you had any experience yourself of finding a practitioner that supports reducing autoimmunity?
I'm afraid I have received no help or understanding within the Nhs system.
I don't think their knowledge extends to autoimmune thyroid disease or how optimal vitamin and minerals need to be in order for good conversion of T4 to T3.
I have now decided to self medicate. It's certainly less stressful than trying to find a TSH to please my doctor.
I am supplementing with adrenal support, the vitamins and minerals as detailed on this site and am five months into taking Natural Desiccated Thyroid as opposed to the monotherapy of Levothyroxine which is all my doctor will prescribe, and having TSH blood tests which are not appropriate if with Graves Disease, let alone having the issue compounded by having had RAI treatment and a burnt out thyroid.
Yes, if I had my time again, I would consider all alternatives before loosing my thyroid.
There are now trials of a vaccine to " kill off " the Graves antibody - so that might be worth reading up on.
I don’t know how to interpret blood results, but I am feeling similar. 3am here in Australia and feel like it’s the end of the road. No guidance really about how the reduced immune system and low white cell affects one’s wellbeing aside from thyroid imbalance. I have just realised I might be anemic and fighting infections, inflamed gut and glands. Is it worth
Just getting the radioactive iodine? This feels to me like a serious illness yet so much popular understanding is it’s common and not a big deal. Is a big deal if your life is unravelling - loss of income, etc. Hang in there 😊
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