I'm female, 24, and had my entire thyroid removed in June last year (2014) after about 3 years of uncontrollable hyperthyroidism (Graves). I currently take 125mg levothyroxine every 3 days and 100mg on all other days. (Very confusing I know, but this is the only dose that keeps my T4/T3 within normal levels)
I've just had a call from my doctor following my latest blood test results. She said that my T4/T3 are within normal (although in the mid-higher end) but that my TSh is 'sky high' (22). As I feel fairly normal in my health she has not suggested any changes to my medication.
I'm wondering if anyone else has had this same issue at all? Are there any health implications for having a high TSH, but no thyroid? (I ask as I have been adversely affected in terms of liver function and WBC count due to my thyroid issues) Is it possible that there is an issue with my pituitary gland, if that is producing unnecessary amounts of TSH (this is not the first time I have had these sorts of results)?
Any advice would be greatly appreciated.
Rebecca.
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Becka_Anne
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Someone who has had Graves like you and had their thyroid gland removed will respond.
I am hypo and I don't know why your GP hasn't increased your levothyroxine. In fact, I have no idea when you have no thyroid gland whatsover that you haven't been prescribed T3 to your T4.
You may feel o.k. at present but I think you will begin to gather clinical symptoms with such a high TSH. This is an excerpt from Thyroiduk.org:-
FT3 = FREE T3
T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.
The approx. reference range for Free T3 is 4 to 8.3
We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).
Rebecca, malabsorption of Levothyroxine could cause a rise in TSH. Do you take Levothyroxine with water on an empty stomach one hour before or two hours after food and drink, 2 hours away from other medication and supplements and four hours away from iron, calcium, vitamin D and oestrogen?
Did your FT4 and FT3 remain good when your TSH rose on previous occasions?
I usually take my levothyroxine dry when I first wake up, however, I sometimes forget and just take it whenever I remember.
I take a prescribed Calcium supplement due to complications from my operation, I take it at the same time as my levothyroxine - Should I not? I've never been told any differently...
I did have some tests when I was taking Carbimazole for Chron's etc as the doctor suspected that I was not absorbing the medication correctly. These all came back normal though.
Rebecca, you must take Levothyroxine with water as I posted above for maximum absorption and uptake. Set an alarm or task reminder on your phone to remind you to take it regularly.
Taking it with calcium means it binds to the calcium instead of being absorbed into the gut so leave 4 hours between Levothyroxine and calcium.
It might be an idea to have a coeliac screen to rule out malabsorption due to gluten intolerance.
If your FT3 and FT4 are towards the higher end of the reference range and you are feeling well, that seems to imply that you don't have an absorption or conversion problem.
Such a high TSH could possibly indicate a pituitary issue - have you had an MRI scan of the pituitary? I wonder if somehow your antibodies are stimulating your pituitary?
As you are young and have had your thyroid totally removed I would ask your doctor if s/he would consider prescribing Natural Dessicated Thyroid. This replaces all the hormones that your thyroid should produce, not just T4. From memory I think your thyroid produces T4, T3, T2, T1 and calcitonin.
Calcitonin helps protect against osteoporosis. The actions of T2 and T1 I believe are unknown. Rather than admit this, doctors will tell you that you don't need them. Would your thyroid produce substances that your body doesn't need?
No, I have not had any mention of a pituitary issue at all from my doctor, but wondered if it was possible. (Have since done some research and found it is) I'll have to consider asking about pituitary issues and see what my doctor thinks about it. Maybe an MRI would be a good option.
I'm a vegan so really don't want to take NDT unless it will absolutely, positively be needed. At the moment I feel well and so haven't asked about it, if this changes I would have to give it some serious consideration...
Most patients who have had their thyroid removed actually respond best to natural desiccated thyroid, but as Shaws says, T3 should be added to your T4.
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