Good morning all. Can you help me with some symptom queries? I have my thyroid removed due to Graves last June. Since then I’ve been on Levi and figuring out a dosage that suits me. Since my last bloods in Jan I’ve been on 100/100/75 and it’s been working for me. I’ve felt stable and my heart rate has dropped to a more stable level.
Over the last few weeks I’ve developed awful headaches, I’m not sleeping well, getting pins and needles in my hands at night and waking with awful neck and shoulder pain. My eyes feel dry and I’m shattered. Not sure whether this is to do with thyroid issues or just the current situation!
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Do you have some blood results to share with us? We need TSH, T4 and T3. Also any vitamin levels you might have like B12, Iron and Ferritin, Vitamin D and Folate. All these need to be optimal for the Levothyroxine to work. I am surprised you feel well on such a low dose of Levothyroxine because some people without a thyroid need T3 as well as T4 to feel completely well.
It sounds as if those are hypo symptoms returning which would mean that you need to consider your dose. You need to get bloods done. If at all possible get TSH, FT4 , FT3, folate, ferritin, B12, fit D done.
The vitamin levels need to be well over halfway through their ranges. If they aren't then this will make you less efficient at processing thyroid hormones.
Only by comparing TSH, FT4 and FT3 from the same blood draw will you know if you are adequately medicated on levo. Also if you are converting T4 to T3 efficiently. The thyroid gland naturally produces T4 plus some T3 and it could be that you need some T3 added to your medication.
Graves is an autoimmune disease, and as such it's for life, it's in your blood and DNA. I too have Graves Disease and had RAI thyroid ablation in 2005, becoming very unwell some 8 years later. I have had to learn of my situation back to front, but am now much better placed thanks in the most part due to this amazing website and a couple of books.
It is essential that you are dosed and monitored on T3 and T4 blood test results and not a TSH blood test result. This is true for all AI thyroid disease patients and especially so for Graves patients as we carry Graves antibodies in our blood that latch onto TSH receptors driving them down, giving false low TSH readings. You have had your thyroid removed but that does not guarantee all your antibodies were contained within this gland.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 :
Some people can get by on T4 - Levothyroxine alone :
some people at some point in time simply stop converting T4 into T3 :
and some people simply need to have both these vital hormones, T3 and T4, dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.
T4 is a storage hormones and the body needs to be able to convert into T3 which is the active hormone that the body runs on.
T3 is said to be about 4 times more powerful than T4 and read people need about 50 T3 daily just to function.
As you will see from the above, having lost your own thyroid production you have lost that small amount of T3 you once produced, but that actually equates to around 20% of your overall well being, and over time, this can be debilitating and pull you down further.
Your ability to convert your T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not up, and maintained at optimal levels, and by this I do not mean just somewhere in the NHS range.
In the first instance I would suggest you undertake a fully thyroid function blood test to include all as detailed above. If your doctor will not help you there are private companies as detailed on the Thyroid uk website. and once with these results start a new post including the results and ranges, and people better able than me will talk you through any action that needs to be taken.
This is where I was a couple of years ago, and am now much improved, and giving back, where I feel I can help someone else.
You might like to take a look at the Elaine Moore Graves Disease Foundation website.
This lady has Graves and went through RAI thyroid ablation in the late 1990's. Finding no help with her continued health issues, and being a medical researcher / technician she started ' digging ' and ultimately wrote a book on Graves Disease. Now she runs a well researched and respected website, with a world wide following, and an open forum for anybody to post and ask questions of herself and the wider community.
Your Thyroid and How To Keep It Healthy written by a doctor, Barry Durrant - Peatfield, who has hypothyroidism is a relatively easy, sometimes insightful, funny, read of all things thyroid, and though we may not have this amazing little gland we do need to know all that it does so we can try and compensate accordingly.
Following RAI thyroid ablation I now manage lingering Graves symptoms, thyroid eye disease and hypothyroidism.
I was treated with Levothyroxine and dosed and monitored on just TSH blood test results, and refused a trial of T3 in 2018 by my local hospital, because of my suppressed TSH. I am now self medicating both these essential thyroid hormones and health wise much improved.
P.S. You will find relief for your dry, sore eyes if you use eye drops, lotions or potions.
There are many options, just ensure they are Preservative Free.
There are varying degrees of strength of ointment, some light and more suited to day wear, whilst others are of a heavier nature and more suited for use overnight where the blurred vision caused isn't problematic.
Your doctor may prescribe should you discuss this with him/her.
This reply comes late- hopefully you're doing better. My understanding is that during the TT surgery, parathyroids can get affected. They control calcium regulation in the body. The pins and needles symptom you mentioned was one of the symptoms I read about as being potentially caused by a calcium imbalance post-TT. Maybe test for that. Good luck to you, all of us 'selected' for this autoimmunity journey must be strong: it is not easy.
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