Hello, I am new to this amazing site, thanks for accepting me.
I am 45yo. female and on May 11 I had my thyroid ablation for an severe Graves disease not responding at treatment for 18 months and many nodules on the thyroid (two of them were TIRADS4 so I am stressed till I received the result of anatomopathologic exam).
Since thyoide removal, I am on 100 mcg of L-Thyroxine 100 but yesterday I had very HBP (140/90) which is strange, as I am normotensive (also I had terrible symptoms HBP related: strong headache, vertiges even if I was lying in bed and a very bad general condition). It did not normalize, not even late in the evening, so I managed to fall asleep only at 4 o'clock am. The first blood tests after my thyroidectomy are scheduled only in ten days :-(. Please tell me, is it possible that I need a higher dosage of L-Thyroxine? Do you have any idea what I can do in the meantime to avoid another episode of HBP? Thanks a lot!
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Rimin
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Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
It’s going to take awhile for levels to settle
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Meanwhile ask GP to test vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
When were vitamin levels last tested
Have you had coeliac blood test done
Have you considered trialing strictly gluten free diet
Last time when I tested vitamin D and Ferritin, was last month. I have a deficit of D so I am already on the supplement for it. Ferritin is in the limits but to the inferior one - please tell me, do I need to do anything to improve this? Folate and B12, I do not remember when I did them last time. I can do them into a week or so.
As suplemments I am taking :
- calcium (for one month after thyroidectomy - this the the protocol of my surgeon)
- D vitamin for the proven deficit
- Forcapil as I am loosing a lot of hair
- selenium as I have exophtalmia.
I never did celiac tests and I am not sure my GP would agree to send me to have them.
I was few times on and off gluten, sugar and lactose free. Please tell me, would it be important to have at least gluten free diet, isn't? Thanks again.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I'm afraid it's early days and you need to give this thyroid hormone replacement time to settle.
It is essential that you are dosed and monitored on your T3 and T4 blood test results and not just a TSH which generally happens in primary care in the uk but imagine at this point in time you are still under the hospital and endocrinologist.
Graves is an auto immune disease and " just happens " to attack the thyroid and it is because the thyroid is such a major gland that this hyperthyroidism can be life threatening to not treated.
The medication is with Anti Thyroid drugs to block your own T3 and T4 thyroid hormones rising any further and it's hoped in this first phase of this disease that the Graves antibodies attacking your body will automatically reduce themselves - which may or may not happen.
Currently the mainstream medical do not how to reduce or control the auto immune component of this disease and seem to pay very little attention to it after initial diagnosis.
Graves is known to trash vitamins and minerals and optimal vitamins and minerals, especially ferritin, folate, B2 and vitamin D are needed in order to convert the T4 - Levothyroxine into T3 which is the active thyroid hormone that the body runs on.
A fully functioning working working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 only, some people find t4 stops working as well as it oce did and need the addition of a little T3 to replace their own " lost T3 " and some people find they can't convert t4 and need to be put on T3 - Liothyronine only.
You might like some further reading - I found Elaine Moore's Graves Disease Foundation website the most well rounded of all and Elaine plays particular attention to the AI component of Graves offering holistic and alternative options to calming down one's immune system response which currently mainstream medical have no answers on.
Elaine has Graves as do I - and went through RAI thyroid ablation - I think a thyroidectomy a better option but I wasn't given a choice, though well on the AT medication which would have been my first option had I known anything back in 2005:
There is a book, Your Thyroid and How To Keep It Healthy written by a doctor, Barry Durrant - Peatfield, who has hypothyroidism himself, which is an easy sometimes amusing read and this equipped me better, along with Elaine's first book, to understand where I was in my thyroid journey around 5 years ago.
Thyroid uk the charity behind this amazing forum has the mosyt comprehensive sections on everything you may need to consult and of course, the forum members here, who are help and support each other in better thyroid health for all of us.
There is no quick fix to thyroid hormone replacement, and it does take time, but first and foremost please ensure your vitamins and minerals are optimal within the NHS ranges.
This may well mean supplementing yourself as just being in a NHS range for anything, now you haven't a thyroid, isn't what we need, as now optimal is best to support thyroid hormone conversion and give you back your health and well being.
P.S. Can you please confirm if you have had your thyroid surgically removed or had Radioactive Iodine treatment which is normally a tablet or drink of this toxic sunstance that slowly buns out the thyroid in situ?
I am not in the hospital. I was surged on May 11 and released at home at May 12.
Btw: I was not a candidate for radioactive iodine therapy as I have exophtalmia and as you know, they believe the iodine might worsening the exophtalmia. So the surgery was the only option for me.
I found Barry Durrant-Peatfield book to buy it. You mention also Elaine's (first) book. I am a bit confused. Can you please help me by telling if is still available to be bought?
Yes, I know, my TED - thyroid eye disease - was caused by the RAI :
I became very unwell around 8 years after RAI thyroid ablation and spent 2 years going around various hospital departments but with no real resolve to my il health.
Housebound and when referred to as a conundrum by my doctor, I thought, maybe that Graves had come back and order Elaine's first book - Graves Disease A Practical Guide : which actually came through Amazon from a thrift shop in the States.
I read of all my current symptoms being associated with Graves after RAI treatment and started my recovery, mostly by myself.
I did purchase a second copy of the book for my doctor but she declined though knew I am dyslexic and that my cognitive functions, at the time, severely compromised.
All Elaine's book are detailed on her Graves foundation website and there are several, including Graves Ophthalmology and Autoimmune Diseases.
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