I was diagnosed with overactive thyroid around 2003/4 and went on Carbamazole for sometime the had three radio iodine treatments thus sending me under active.Since then it’s been difficult getting back to the way I was before all this thyroid problem kicked off and I’ve been on 100, 50 and 75 mcg per day over different periods of time trying to get things right. My latest blood test resulted in one of the GP’s to suggesting I now go on 50 mcg one day and 75 mcg another rather than 75 mcg every day. The one thing I do find is I get tired and no matter what I try this is the main issues any suggestions I am 66 now but this as been a situation for a long time.By year way it’s a fact that GP’s are not really interested in thyroid problems and associated effects it can have on a person.
Geffers
Written by
geffers
To view profiles and participate in discussions please or .
I too am with hypothyroidism after RAI for Graves Disease in 2005 when age 58 and can totally indentify with your symptoms.
I became very unwell around 8 years after RAI treatment and found myself on here looking for answers and I have managed to turn things around for myself as I found little help nor understanding in the mainstream NHS.
In order to get a considered opinion you will need to run some blood tests so people better able than myself can advise on facts, rather than just quessing what's going on, and why you are still struggling with these symptoms of hypothyroidism.
It is known that primary hypothyroidism caused by RAI can be more challenging to treat:
It is known that RAI trashes core strength vitamins and minerals:
It is known that no thyroid hrmone works well if vitamins and minerals are not maintained optimal levels :
It is essentially that you are monitored and dosed on your T3 and T4 blood tests levels and not a TSH blood test and it is known that generally in primary care only a TSH blood test is undertaken:
If your doctor is unable to help, you can orgainsize a private blood test through one of the companies listed on the Thyroid uk website, the charity behind and who support this amazing forum.
We need to see your TSH, T3, T4, antibodies, and ferritin, folate, B12 and vitamin D status.
When with this result simply start a new post with the results and ranges and people better able than me will talk you through the next step you can take back to better health.
RAI is a slow burn and ultimately you end up with a disabled, burnt out gland with little, if any function.
A fully functioning working thyroid gland would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T3 is said to be about 3/4 times more powerful than T4 and the active hormone that the body runs on , with most people using about 50 T3 daily just to function.
Generally speaking the NHS routinely only prescribe T4 - levothyroxine which your body than needs to convert into T3 as it is the T3 that gives you your energy and kicks starts your metabolism.
Levothyroxine needs to convert in your body into T3 and this may not be happening well, especially if with other underlying health issues and if vitamins and minerals are not at high enough levels in their ranges.
There are thyroid hormone replacement options other than T4 - Levothyroxine and some people add Liothyronine - T3 to their T4 whilst others take full spectrum thyroid hormone replacement referred to as Natural Desiccated Thyroid ( NDT ) whilst others take T3 only or add a little T3 or T4 to their NDT.
I found the following helpful :
Elaine Moore's first book Graves Disease -A Practical Guide - and this lady also has the same health issues as us and now runs a very well researched, respected website to learn from :
A book written by a doctor who has hypothyroidism : Your Thyroid and How To Keep It Healthy - Barry Durrant - Peatfield : we may not now have this amazing liitle gland but we do need to know all that it does so we can try and compensate for it's loss.
There's much to read and understand and fully understand that it's a lot to take in, but it does register, and you will learn a lot by just reading of other peoples posts and answers, but you can get better and turn a lot of thingsa round for yourself, just as I did and still am, as we are all a work in progress, learning from each other and giving support.
Even 75mcg everyday is an extremely small dose, unless extremely petite
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.